ACW: Stigma

Bangladesh: Stronger HIV policy needed

2008-03-06T10:05:00.001+07:00

By, Reuters, February 19, 2008

Insufficient data, coupled with the lack of a coherent HIV prevention policy, are undermining Bangladesh's national AIDS programme, say health experts.

"We need to gather stronger empirical data and relate all problems faced by HIV/AIDS, with a special emphasis on the use of condoms by all who need them," said Dan Odallo, country coordinator of UNAIDS in Bangladesh.

Among intravenous drug users (IDUs), HIV has already become a concentrated epidemic - when five percent or more members of any high-risk group are infected.

"In more than one IDU cluster in Dhaka [the capital], 7.5 percent HIV-positive cases have been diagnosed recently," said Dr Mohammad Hanifuddin, director of the government's project to combat sexually transmitted infections (STI) and HIV.

Most of Bangladesh's more than 150 million inhabitants are largely unaware of the risk factors; moreover, many seldom practice safe sex, including condom usage, warned Prof Nazrul Islam, head of the department of virology at the Sheikh Mujib Medical University in Dhaka.

Poor official statistics

Although there are only 1,207 officially confirmed HIV-positive cases, national estimates put the number of people living with HIV in the world's eighth most populated nation closer to 7,500 but the real number could be several times higher.

"Most of these people do not go to the laboratories for a test," said Shahnaz Begum of Durjoy Mohila Shongho, a national NGO working with street-based commercial sex workers, citing the social stigma associated with the disease. "They only go to the labs when they are either compelled or enticed to. The official statistics are just the tip of an iceberg."

Islam noted that "The biggest problem facing the country's HIV/AIDS prevention and control programme is scanty statistics," and no one really knew what the true facts were.

Inept national AIDS programme

Source: http://www.alertnet.org/thenews/newsdesk/IRIN/0dc3a804d13d39b2029000c8ea81766b.htm

HIV women face up to stigma with campaign

2008-03-05T13:00:00.002+07:00

By, The New Zealand Harald, February 21, 2008

A campaign to "de-stigmatise" women with the human immunodeficiency virus (HIV) was launched in Auckland yesterday.

The campaign is using five women with HIV to put a public face on the disease, in a bid to overcome ignorance and complacency.

Positive Woman, an HIV and Aids support group based in Auckland, said that in the past five years there had been a steady increase in the number of people, particularly women, with HIV.

National co-ordinator, Jane Bruning, said the campaign wanted all New Zealandersto question their assumptions about thoseliving with HIV.

She said many people believed HIV would not touch them and the risk was confined to specific sectors of the community.

"We are saying the risk is a lot closer to home, our faces and our stories are not so different to many New Zealand women."

She said because of the stigma of living with HIV, many women kept their HIV status secret, fearing negative reaction and discrimination. "The truth is that those living with HIV in New Zealand are everyday people leading everyday lives.

"No matter how a person contracts HIV, they shouldn't have to deal with the added burden of stigmatisation on top of chronic health problems."

The campaign will feature advertising on buses, a website and in magazines.

- NZPA

Source: http://www.nzherald.co.nz/category/story.cfm?c_id=204&objectid=10493615

HIV stigmatization still widespread

2008-03-04T16:37:00.001+07:00

By, Kate Melville, Science a gogo, February 26, 2008

Stereotypes and misinformation about HIV that are commonplace among the general public are also evident in a surprising number of clinical staff, a study from the University at Buffalo has found. Published in the journal AIDS Patient Care and STDs, Lance S. Rintamaki's study shows that more than 25 years after its discovery, HIV still has the power to generate a broad array of stigmatizing behavior. People infected with HIV have previously labeled dealing with stigma as the most significant social and psychological challenge of the HIV experience and Rintamaki's study shows little has changed.

Sufferers' experiences were categorized by the type of stigmatizing behavior that they experienced most often in the presence of health-care personnel. These categories were: lack of eye contact; assuming physical distance; using disdainful voice tone or inflection; asking confrontational questions; showing irritation, anger, nervousness, fear or panic; taking excessive precautions; scaring, mocking, blaming or ignoring patients; providing substandard care or denying care, and being generally abusive.

Stigmatizing experiences included judgmental behavior and panic on the part of providers when informed of a patient's HIV status, doctors "hermetically sealing" themselves before approaching the patient and patients being told they were going to die. Participants described being blamed openly by health-care providers for their condition. One patient told of being scolded by a phlebotomist; "If you hadn't done this to yourself, we wouldn't have to be going through this!" when he objected to being "poked" painfully several times as she searched for a viable vein to draw blood.

Other reports included the hospital worker who refused to mop the floor in an HIV patient's hospital room, the dentist who turned away a patient because of his HIV status and rough-handling by paramedics. One participant said he had so little eye contact with his neurologist that he couldn't describe the doctor's face. Another participant recounted a nurse's disdain when she delivered his AIDS diagnosis: "It was just so callous and cold the way she said it; 'You have AIDS.' There was no feeling. It's almost like a stone-faced warden or something. No concern."

"Given patients' sensitivity to any indication of bias or discrimination, it's likely that even well-intentioned health-care personnel sometimes engage in behaviors that are interpreted negatively by their patients," said Rintamaki. "The findings from this study give health-care personnel additional insights on what to avoid, or if certain protocols are standard procedure, what to explain further. These approaches might help to prevent misunderstandings."

Source: http://www.scienceagogo.com/news/20080125135059data_trunc_sys.shtml

China admits that cases of HIV/Aids have risen 45 per cent

2008-03-04T15:40:00.002+07:00

By, Clifford Coonan, The Independent, February 23, 2008

New cases of HIV/Aids in China soared by 45 per cent last year compared with 2006, the Health Ministry in Beijing has revealed. The staggering rise was put down to changing social attitudes and an improvement in data collection.

The government had said late last year that 700,000 people were living with the virus, an increase from an earlier estimate of 650,000. The year before, China lowered its estimate to 650,000 from 840,000, despite warnings from international experts that the disease was spreading due to ignorance and because many people were too afraid or too poor to seek help.

The ministry gave few details about the large percentage rise in sexually transmitted diseases or those passed through the blood. There was also a sharp rise of 24 per cent in syphilis cases.

"It's been hard over the years to discover the number of Aids patients because of the social stigma," a ministry spokesman said. The disease is spreading fast in a country where information about Aids has long been suppressed. For many years, Chinese would say HIV/Aids was a disease that affected foreigners, and could be passed through shaking hands or sharing chopsticks.

The government has finally acknowledged that it faces a battle in resolving the rise in HIV/Aids infections. The disease is now mainly sexually transmitted; before, it had been mostly caused by intravenous drug use.

The United Nations has warned that China could have 10 million cases of HIV by 2010 unless it takes steps to educate the public and fight the epidemic.

A major advance in breaking down the stigma attached to HIV/Aids came in 2003 when Premier Wen Jiabao became China's first senior leader to publicly shake hands with Aids patients, marking a significant change in government policy on the disease. President Hu Jintao has also been photographed embracing Aids patients.

As well as the traditional routes of spreading HIV/Aids, such as prostitution and intravenous drug use, the disease in China has been spread by unsanitary, uncontrolled blood banks that travelled rural areas buying blood. About 70,000 people had been infected by contaminated transfusions.

The Health Ministry survey also showed that even among better-educated city dwellers, nearly 60 per cent were "nervous" to have public contact with HIV-positive people.

Against this kind of background, changing attitudes is an uphill battle, and the Health Ministry has come up with imaginative ways to deal with the problem. It has introduced a major TV campaign to promote condom use, with advertisements produced by the Oscar-winning Aids documentary maker, Ruby Yang. This is a significant advance in a country where talking about sex remains taboo.

China's 200 million migrant workers are among the high-risk groups. Building workers can now attend lectures on the ways HIV/Aids is spread and the importance of condom use.

"I came to know that Aids was not a disease exclusively belonging to sexually active Westerners," Chen Wei, 28, told the People's Daily after a session in the training school on a building site in Changsha in Hunan province.

In 2006, the government issued new rules. Now no organisation or individual is allowed to discriminate against Aids patients or their families, and Aids patients will be entitled to free treatment.

The Health Ministry data also showed scarlet fever and measles cases rose in 2007, though other diseases declined. There was just one death from plague last year, and none from cholera.

Source: http://www.independent.co.uk/news/world/asia/china-admits-that-cases-of-hivaids-have-risen-45-per-cent-786175.html

Breaking Down Barriers: A Woman's Path to Reducing HIV Stigma in the Arab American Community

2008-03-03T14:24:00.002+07:00

By, The Earth Times, February 20, 2008

HIV/AIDS is still a taboo topic among many Arab Americans, but one determined woman is working hard to change this. For Dinah Ayna, talking about HIV and addressing the stigma among the women in her community is a challenging, yet a rewarding part of her daily routine.

According to the Arab American Institute, there are 3.5 million Arab Americans in the U.S. One-third live in Michigan, with most located in Dearborn, Michigan. As the Substance Abuse Prevention Coordinator at the Arab Community Center for Economic and Social Services (ACCESS) in Dearborn, Dinah does what no one else dares to do in the Arab American Community: talk to women about HIV and Sexually Transmitted Infections (STIs).

Dinah works at ACCESS' Community Health and Research Center that promotes physical, mental, and social health of the Arab American community using a holistic, multicultural approach. At the Center, Arab Americans, Arab immigrants, and refugees from 22 countries receive state-of-the-art services that range from physicals and immunizations to education about cancer, diabetes, and HIV/AIDS.

"We need to talk about HIV in a way that doesn't conflict with people's religious beliefs and culture," says Dinah. She finds that women in her community relate to her and the cultural context in which she frames the issues. As an Arab American woman - her parents are from Palestine - her work fills a cultural gap for appropriate methods that can help Arab American women discuss HIV.

In the Arab American community, sharaf or honor is an important social aspect within families where an individual's actions can bring shame to the entire family. Many women live in fear of painful repercussions within their families and communities, and would rather live in ignorance than know they have HIV.

Dinah spends most of her day talking to Arab American women, ages 16 to 50 that come to the Center for counseling and/or medical tests. She talks with them about safe sex practices, HIV, and STI testing options. "The biggest challenges," says Dinah, "are getting women to talk about HIV and getting them tested. Many women don't want to get tested - at least not before they come back to the clinic a few times."

In 2005, women represented 26% of new AIDS diagnoses, compared to only 11% of new AIDS cases reported in 1990. Due to the increase of HIV/AIDS in women and girls, the Federal government instituted "National Women and Girls HIV/AIDS Awareness Day," held each year on March 10. Its efforts align with ACCESS': encouraging discussions among women about HIV prevention, testing, and care.

Since many of Dinah's clients are mothers she emphasizes to them the importance of talking with their children about HIV. "There are few things as powerful as the mother to child bond," says Dinah, "Mothers can play a critical role in educating their children about health risks and safe practices."

ACCESS' Public Health Team incorporates discussions about HIV into most medical screenings. The Centers for Disease Control and Prevention (CDC) recommends voluntary HIV testing during routine medical and prenatal visits for all people ages 13 to 64. Dinah is passionate about making this a reality for Arab Americans.

Dinah is a trusted resource in the community. As one of her clients stated, "Dinah really put me on the right track." Much of her success stems from helping women realize that knowing their HIV status and educating their children about HIV, is first and foremost a matter of health.

To learn more about: http://www.accesscommunity.org/ http://www.hivtest.org/ http://www.aids.gov/

Arab Community Center for Economic and Social Services

Source: http://www.earthtimes.org/articles/show/breaking-down-barriers-a-womans-path-to-reducing-hiv-stigma,285499.shtml

Fighting Aids: Raped, pregnant, infected with HIV – and happy to help

2008-03-03T14:05:00.002+07:00

By, The Independent, March 2, 2008

What could be worse than being raped? To be raped and to find yourself pregnant by your rapist. Or to be raped, pregnant and discover you've got HIV. And for the unborn child to be at risk of contracting HIV.

Three months after being raped by her boss, unemployed and sick, 21-year-old Mathakane Metsing was in her local clinic in Mafeteng, Lesotho. There she underwent two tests.

"Two blue lines and you're pregnant", the nurse told her. "And two red lines here and you're HIV positive." Four lines – two red, two blue. In 10 minutes. Mathakane cried for two days. Worse still, she discovered that she had passed the virus on to the man she loved and wanted to marry. And later, that her family was also infected; her two sisters and her mother, who died the following year.

Two years on, and I'm sitting with Mathakane for the launch of Unicef UK's Mother's Day campaign to prevent all mother-to-child transmission of HIV by 2010. She's minute and looks like a teenager. Wearing the traditional dress of Lesotho, and carrying a photo of her two-year-old daughter, she's one of the happiest people I have ever met. She speaks fluent English despite never having been taught and is now an Aids prevention campaigner and counsellor in Lesotho.

It's a constant struggle. Despite Mathakane's experience, she failed to convince even her mother to get treatment. "At first when they found out I had HIV, my mother and my sisters laughed at me. They didn't like me because of it. Then my mother found out she had HIV and she was very ashamed." Her mother died. Her brother died. Her sister-in-law died. Mathakane's friends still have unprotected sex. There is ignorance, stigma and superstition. Rape is widespread, she tells me. Virgins – usually prepubescent children – are raped by men hoping to cure themselves of the virus. Some men even think condoms carry the Aids virus.

In Lesotho, most of the men work in the mines in neighbouring South Africa. They visit brothels packed with HIV-positive prostitutes, get infected, then pass the virus on to their wives. Their wives get pregnant. Their babies get HIV.

At the summit in 2007, the UK government, along with all G8 countries, promised to contribute substantially towards the drugs to prevent mother-to-child transmission. At the moment only one in five pregnant women has access to those drugs. The estimated cost is huge – $1.5bn (£750m) – but so is the problem. Every minute a child is born with HIV and another dies because of it.

Mathakane's triumph is that, thanks to a £1 dose of the antiretroviral Nevirapine, her baby is HIV negative. Her name is Blessing.

Jemima Khan is a Unicef ambassador

Source: http://www.independent.co.uk/life-style/health-and-wellbeing/health-news/fighting-aids-raped-pregnant-infected-with-hiv-ndash-and-happy-to-help-790209.html

HIV patients still face stigma from health care providers

2008-03-03T11:10:00.002+07:00

By, Lois Baker, UB Reporter, February 28, 2008

The doctor who wouldn’t come into the patient’s hospital room. The neurologist who avoided eye contact. The ambulance attendant who angrily threw her bloodied gloves into the street after learning the injured patient was HIV-positive.

These are reactions of some health care personnel when faced with caring for persons infected with the human immunodeficiency virus (HIV) more than 25 years after its discovery.

The experiences are documented in a study headed by Lance S. Rintamaki, assistant professor of communication and health behavior in the College of Arts and Sciences, and published recently in the journal AIDS Patient Care and STDs.

“This study reveals the variety of such problematic events,” said Rintamaki, “as well as the considerable array of health care personnel listed by participants in this study. Clinicians should have the training and common sense to avoid a lot of these behaviors, but perhaps we shouldn’t be surprised when hearing about nonclinical staff caught up in these events. They’re likely relying on the same stereotypes and misinformation about HIV that are commonplace among the general public, which may lead them to act in fearful and stigmatizing ways toward HIV-positive patients.”

Persons infected with HIV must spend considerable time in the presence of health care personnel in dealing with their disease, and experiencing stigma can be discouraging. They have labeled dealing with stigma the most significant social and psychological challenge of the HIV experience.

Rintamaki said the handful of existing studies of HIV stigma in health care settings have focused mostly on one type of health care personnel, such as doctors or nurses, and have documented their self-reported attitudes rather than the actual experiences of patients on the receiving end of those attitudes. Those few who have tried to document the frequency of such events have failed to describe the specific behaviors these events entail, he noted.

To take this next step, Rintamaki and colleagues recruited a convenience sample of 50 people seen in the infectious disease units of three Veterans Administration hospitals in the Midwest.

The study was conducted in phases. Eight of the volunteers explained their experiences with stigmatizing behavior in health care settings in two focus groups. Researchers then incorporated these data into one-on-one recorded interviews with the remaining 42 participants.

Interviews were transcribed and experiences were coded and categorized by type of stigmatizing behavior that study participants experienced most often in the presence of health care personnel. These categories were lack of eye contact; assuming physical distance; using disdainful voice tone or inflection; asking confrontational questions; showing irritation, anger, nervousness, fear or panic; taking excessive precautions; scaring, mocking, blaming or ignoring patients; providing substandard care or denying care; and being generally abusive.

Several participants reported only positive experiences with health care providers, while others reported experiencing stigma in a variety of health care settings by a variety of providers.

One participant said he had so little eye contact with his neurologist that he couldn’t describe the doctor’s face, according to the study. Another participant recounted a nurse’s disdain when she delivered his AIDS diagnosis: “It was just so callous and cold the way she said it… ‘You have AIDS.’…There was no feeling. It’s almost like a stone-faced warden or something. No concern.”

Stigmatizing experiences included judgmental behavior and panic on the part of providers when informed of a patient’s HIV status, doctors “hermetically sealing” themselves before approaching the patient and patients being told they were going to die.

Participants described being blamed openly by health care providers for their condition. One patient told of being scolded by a phlebotomist—“If you hadn’t done this to yourself, we wouldn’t have to be going through this!”—when he objected to being “poked” painfully several times as she searched for a viable vein to draw blood.

Other reports included the hospital worker who refused to mop the floor in an HIV patient’s hospital room, the dentist who turned away a patient because of his HIV status and rough handling by paramedics.

“This study reveals that patients are sensitive to such behaviors, indicating the need for all health care personnel to be mindful of their actions toward these patients,” said Rintamaki.

“Given patients’ sensitivity to any indication of bias or discrimination, it’s likely that even well-intentioned health care personnel sometimes engage in behaviors that are interpreted negatively by their patients. The findings from this study give health care personnel additional insights on what to avoid, or if certain protocols are standard procedure, what to explain further. These approaches might help to prevent misunderstandings and hard feelings.”

Additional researchers on the study were Allison Scott and Kama A. Kosenko from the University of Illinois at Urbana-Campaign and Robin E. Jensen from Purdue University.

The study was supported by a Veterans Administration Health Services Research and Development training grant.

Source: http://www.buffalo.edu/reporter/vol39/vol39n23/articles/HIVStigma.html

HIV/AIDS and the stigma

2008-01-31T15:08:00.000+07:00

By, The Tide Online, January 28, 2008

People living with HIV/AIDS are humans and so should be treated as such. Most times I ponder if malaria is not a killer disease that kills every passing minute of the day. People prefer mingling with those suffering from malaria than those with HIV/AIDS not just a disease like every other?

The number of souls lost through malaria cannot be juxtaposed against that of HIV/AIDS.

Everybody needs love and care whether healthy, infected with malaria parasite or HIV/AIDS virus. The amount of love and care shown to a sick person helps the person psychologically and even physically to fight the disease and to have a quick recovery or even a positive mental attitude towards his situation.

Treating people with HIV/AIDS as outcast is not the best. We do not need to discriminate. They ought to be seen as our neighbours and not seen as the “man next door”.

It is a fact that sleeping in the same room with someone that has HIV/AIDS is not a means of contacting the disease not eating from the same plate with them. The actual means of contacting this so much dreaded disease is mostly overlooked. People have forgotten that HIV/AIDS is transferred through the use and sharing of unsterilised sharp objects like needles, blades and shaving sticks, transfusion of unscreened blood and indulging in what is called “casual sex” without the use of condom.

The fact that man always thinks that evil can only befall his neighbour and not himself has not stopped the unimaginable from happening. Most youths proudly beat their chest and say “I cannot be HIV positive. While they still sow their “wild oats”

HIV is not all about personality that is the way one sees oneself but it is how one is able to control oneself.

Campaigns all over the country have fallen on deaf ears. One of the ills that can befall a nation is ill-health. The HIV epidemic needs the corporations of all and sundry to fight the disease and not sitting to stigmatise.

Regrettably, some of the people that take stigmatisation seriously are HIV positive themselves. Though they have not gone for a test.

Even when HIV/AIDS test is carried out free of charge in our government hospitals now, the fear of the unknown and stigmatisation has restricted a lot of people from queuing for the test at the centres where the test is available.

The provision of Anti-Retroviral Drugs (ARD) to ease the attack of the disease on the white blood cells and the immune system has gone a long way to helping HIV victims live a normal life.

The earlier a person becomes aware that he is a carrier of the disease, the better it is for the person because he receives the medical and psychological treatments available and learns how to cope.

Surprisingly, some victims are shown the door at their place of work because they were able to open up about their status. Some whose status are negative but mistakenly swaped with a positive person’s result are innocently stigmatised. Iragunima is an intern with The Tide.

Source: http://www.thetidenews.com/article.aspx?qrDate=01/28/2008&qrTitle=HIV/AIDS%20and%20the%20stigma&qrColumn=OPINION

SUDAN: HIV status a closely guarded secret for most

2008-01-21T10:45:00.000+07:00

By, IRIN PlusNews, January 18, 2008

Fadia Awad offers us sweets, a traditional Sudanese gesture of hospitality, and then asks if we are going to refuse them, as all her neighbours do.

She belongs to the Rashaida tribe, a traditionally nomadic people who migrated to eastern Sudan from the Arabian Peninsula in the nineteenth century. She and her son, Hamid, 8, live alone in a spotless, one-room hut in a desert settlement outside Kassala, in eastern Sudan.

"Three years ago this house was full of women cooking, talking and laughing," Awad tells IRIN/PlusNews. "But since I got sick, they don't come anymore."

Her husband died from an AIDS-related illness three years ago, not long after returning from military service in Saudi Arabia. She and her son are both HIV positive, but have been healthy since beginning antiretroviral (ARV) treatment two years ago.

"In this tribe, everyone knows your business," Awad says matter-of-factly. "We've been completely isolated." She points to a hut visible from her window. "My husband's relatives live nearby, but I have no relationship with them anymore."

The night before, we had attended the wedding in Kassala of an openly HIV-positive man, Alsawi Ali, to an HIV-positive woman from Khartoum. Ali, the head of a local association for people living with HIV/AIDS (PLWHA) who regularly talks about his status at awareness events, was surrounded by friends eager to congratulate him and shake his hand.

Sadly, Ali's status as a respected member of his community is still a rarity for people living with HIV in northern Sudan, while Awad's experience is closer to the norm.

"There was very little engagement on HIV until a few years ago," said Severine Leonardi, HIV/AIDS manager for the UN Children’s Fund (UNICEF) in northern Sudan. Although the government is now putting its weight behind prevention campaigns, talking openly about HIV is still difficult in the conservative northeast of the country.

Ali's services as a guest speaker were much in demand at the numerous World AIDS Day events in Kassala during December 2007. According to Musa Bungudu, the UNAIDS country coordinator, "Kassala is one of the states that's a little ahead" in terms of AIDS awareness efforts, but in rural areas, such as where Awad lives, evidence of this progress is hard to find.

Hamid's HIV infection means he has no playmates and does not attend school. "Everyone knows about his father and his story, and I'm afraid they'll abuse him," Awad explains. "He tried going to the religious school, but the other boys refused to share a classroom with him so he dropped out."

Even Awad's attempt to make an income from three goats given to her by a non-governmental organisation failed. "No one would buy the milk, so I sold them," she says.

In Port Sudan, on the country's Red Sea coast north of Kassala, six men aged between 20 and 30 died of AIDS-related illnesses in one week during December, all patients at the city's main hospital. Jhalid Sharif, who runs the local branch of the Sudanese Association for People Living with HIV, said only one of the bodies was collected by the deceased's family; the association had to arrange for the collection and burial of the other five.

Fear of such stigma and discrimination prevents many people from revealing their HIV positive status, even to close family.

Hassan Mokhtar [not his real name], 34, from Kassala, learned he was HIV positive over a year ago, but has not told anyone in his family and is careful not to be seen when he enters the clinic to pick up his antiretroviral (ARV) drugs. "I know other HIV positive people who were rejected by their families," he says. "I expect mine would do the same."

''I know other HIV positive who were rejected by their families; I expect mine would do the same.''
Those involved in Sudan's anti-AIDS efforts also worry that the fear of stigma is preventing people from being tested for HIV, and even from seeking life-prolonging ARV treatment.

Although free treatment is slowly becoming available at public health facilities, the problem is getting more people to use them. "Some people will travel to another state to get treatment to avoid being recognised," Ali says.

He recalls one case where a man had been travelling 600km to Khartoum every two months to pick up ARV drugs until he ran out of money to make the journey. "He would have dropped out of treatment if I hadn't gone to the clinic [in Kassala] and got the drugs for him."

So far, the PLWHA association in Kassala only has eight HIV positive members, including Awad and Mokhtar. Ali says high levels of illiteracy, as well as stigma, prevent more PLWHA from getting involved, and some of those who find their way to the association are only willing to speak in closed workshops or at awareness events far from their homes.

The association receives some financial support from ACORD, an international humanitarian organisation, but it has no fixed budget and no vehicle. "Sometimes people from rural areas request us to do awareness activities but we can't because we lack transport," Ali says.

The association in Port Sudan also has eight members living with HIV, one of whom was seriously ill in hospital when IRIN/PlusNews visited. "He was on treatment but he stopped taking it for two months because a watermelon seller told him he had a very good treatment for HIV," Sharif tells us. "The remedy was made of honey and grass."

Lack of financial support and an office where members can meet are problematic, but stigma is the biggest barrier. According to Sharif, "There are many, many people who are in hospital [with AIDS-related illnesses] who are not involved with the association."

ks/he

Source: http://www.plusnews.org/Report.aspx?ReportId=76315

Angola: HIV positive people demand rights

2007-09-27T10:14:00.000+07:00

By, IRIN PlusNews, September 26, 2007

For Father Luํs Fernandez, of the Sacred Heart of Jesus parish in Luanda, capital of Angola, a visit to the market is often all it takes to find out what life is like for people living with HIV.

"How many times have we been called to intervene because a poor woman can no longer sell or buy simply because it has been discovered that she has the virus?" he said.

HIV-positive Angolans suffer a whole spectrum of human rights violations, including discrimination at work, lack of medical treatment and prejudice.

The country has a national HIV prevalence rate of about 2.5 percent in a population of approximately 16 million, although infection rates vary widely by region, with some as low as 1.8 percent and others as high as 10 percent.

Illegal firings

Since 2004, Angola has had laws that guarantee rights for people living with HIV yet infected workers often lose their jobs, still have difficulty finding employment and experience discrimination in workplaces.

"We receive various cases that have already been forwarded to the justice system, but none have been adjudicated," said No้ Mateus, a representative of the Network of People Living with HIV/AIDS in Angola.

Mateus suspects that many illegal dismissals are taking place at private companies, without consequences for the employers. He attributed their impunity to the lack of information HIV-positive people have about their rights, businesses seldom having a facility for dealing with complaints, and the sluggishness of the legal system.

"The slowness of the courts is discouraging. Complainants have to reveal their HIV status, deal with the stigma, and then wait years before a judgment comes down," Mateus told IRIN/PlusNews.

Despite statements from government that it supports labour and business initiatives to protect people with HIV, data based on complaints made by workers to the Ministry of Work and Social Security shows that many businesses disregard the law, demanding that workers reveal the results of HIV tests and firing those who are positive.

Obstacles to treatment

Poverty is entrenched in Angola, despite its oil-powered economic growth. Twenty-seven years of civil war took their toll on infrastructure and social services, and the UN Development Programme's 2006 Human Development Index ranked it at 161 out of 177 countries.

The situation for people living with HIV is especially severe. "What troubles me the most is seeing people die for lack of nutrition," said Elizabeth Santos, 43, who was diagnosed with HIV nine years ago.

"Many people take antiretrovirals (ARVs) while hungry. At the end of the day society will say that these people died of AIDS, but what killed them was being on therapy without also having enough food," she commented.

Taking ARVs without adequate nutrition can compromise treatment, and AIDS activists have urged the government to guarantee a basic package of foodstuffs for destitute patients taking the drugs.

Activists are also calling for the construction of a new public health facility specialising in HIV and AIDS treatment. The Esperan็a Clinic, the only specialised public clinic in Luanda, is too small to meet rising demand.

"It isn't discrimination to have a hospital specialising in HIV, since at many general clinics we have to deal with stigma, even from doctors. In a hospital especially for HIV we would have quality help and we would feel more at ease," said Henda Graciana, an HIV-positive AIDS activist.

Starting with the basics

Lack of information about HIV and AIDS is still one of the major reasons for stigma, especially in remote areas, while prejudice by officials in public institutions often makes it difficult for HIV-positive people to speak out about abuses.

"We need to think of incentives; create the conditions for people with HIV to come forward for help. Because of prejudice, many people just suffer from discrimination and don't bother going to competent authorities," said Roberto Brant Campos, a partnership and social mobilisation consultant for UNAIDS. He added that voluntary testing should provide an opportunity for HIV-positive people to become familiar with their rights.

Father Fernandez pointed to a need to bolster the legal infrastructure for dealing with discrimination cases. Some cases from his parish have been forwarded to the National Criminal Investigation Directorate, but with little result.

"We need to guarantee that there are people with specialised knowledge in dealing with these cases, with a sense of respect and as a way of building more confidence in the system among people with HIV," he said. Fernandez also recommended more community-based interventions, saying, "We need to change the picture."

Guaranteeing the rights of people living with HIV is an urgent concern in Angola, but Odete Tavares, an HIV-positive nurse, suggested that "It would be more realistic to start from the principle that we are citizens, with the right not to be discriminated against, to have access to medication and other basic necessities."

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PNG investigates ‘live burials’ of AIDS victims

2007-08-29T14:54:00.000+07:00

By, Daily Times (Pakistan), August 29, 2007

PORT MORESBY: Police and health workers in Papua New Guinea launched an investigation on Tuesday into reports that AIDS victims in the rugged South Pacific nation are being buried alive by their relatives.

Romanus Pakure, deputy director of the government’s National Aids Council, said the allegations were “a wake-up call” and that police were heading to the sites with health officials.

“I am shocked, the chairman of the council was shocked, we really need to investigate this and verify all these things”, he said.

Social worker Margaret Marabe told reporters Monday that she saw three HIV infected men and two women buried alive by their relatives in remote villages when they became too sick to care for.

“They were crying and calling out their relatives’ names and called for help,” Marabe said on her return to the capital Port Moresby after spending five months in the Southern Highlands on an AIDS awareness campaign.

She said one called out “Mama, Mama” as the soil was being shovelled over his head.

Marabe works for a volunteer organisation called Igat Hope, Pidgin English for I’ve Got Hope, which supports people living with HIV/AIDS.

She said relatives of infected family members told her they had buried the victims because they were afraid of catching the disease themselves.

Papua New Guinea’s fight against AIDS is hampered by its rugged terrain and a belief in witchcraft that is widespread in parts of the highlands, which had no contact with the outside world until the 1930s.

The AIDS council’s Pakure said the reported killings might be connected to people’s superstitions and their belief in sorcery.

“The people living in the coastal areas have got the message and they are not discriminating as much as before but it is a fact that (some) people still blame HIV infected people (saying) sorcery has been done on them,” he said.

He admitted that the council’s awareness and education programmes were not reaching everyone who needed them.

Papua New Guinea faces one of the most serious HIV epidemics in the whole Asia-Pacific region. The first case was reported in 1987, and since then HIV prevalence has risen dramatically.

The disease is spread mainly through heterosexual intercourse in a country where polygamy is practised and rape and sexual violence are also common.

The official estimate is that two percent of PNG’s six million people have contracted the AIDS virus, but non-governmental organisations and volunteer workers believe the figure is much higher.

Projected worst case scenarios of the epidemic see PNG suffering a 12.5 percent drop in its workforce and economic costs of 1.25 billion US dollars annually, according to the Australian government agency, AusAID.

The secretary of Igat Hope, Annie McPherson, said that efforts were being made to educate people in rural areas about the disease but the National Aids Council could not cope.

“The provincial offices are really struggling to get the right personnel and to have offices. There are a lot of offices that have been locked up because they cannot afford to meet their rent,” she said.

McPherson backed Marabe’s reports, saying she had heard of live burials happening in the past, attributing some at least to the mistaken belief that victims who have slipped into a coma are dead.

“There’s no proper medical access available to be able to differentiate between some people who are in a coma and some people who are dead so we need to be able to get more services.

“It is a logistical nightmare to get services to people in the Highlands” she said. PNG receives millions of dollars a year from donor countries to fight HIV, and the National AIDS Council was established by its parliament in December 1997 to oversee and coordinate the response. afp

Source: http://www.dailytimes.com.pk/default.asp?page=2007%5C08%5C29%5Cstory_29-8-2007_pg4_11

Madagascar: New law to fight HIV/AIDS stigma

2007-08-21T09:43:00.000+07:00

By, IRIN PlusNews, August 20, 2007

The HIV prevalence rate in the island nation of Madagascar may be lower than its neighbouring Southern Africa countries, but the levels of stigma and discrimination are just as high. Activists and government officials are hoping that a recently introduced law will alleviate the problem.

"Finally, we will be able to generalise and apply the law," said Fenosoa Ratsimanetrimanana, executive secretary of the National AIDS Committee (CNLS). The legislation stipulates fines for acts of discrimination of up to 400.000 ariary (US$200), and up to 1,000,000 ariary ($500) for disclosing the status of a patient.

"The spirit of this law is non-discrimination, easing the fight against HIV via prevention and information," said Minister of Health Robinson Jean Louis, who thinks the legislation will limit the "risk of explosion" of the virus.

Yves Bourny, a UNAIDS official, welcomed the move, describing it as a "strong message sent by the Malagasy government, who clearly support and recognise people living with HIV/AIDS".

Madagascar is still relatively unaffected by the virus: the CNLS estimates the national infection rate at 0.95 percent. However, the four percent prevalence rate for sexually transmitted infections (STIs) is much higher and, in the eyes of the Health Minister, this represents a possible "entry way for the HI virus."

No prominent Malagasy figure has publicly acknowledged being HIV positive, but Madagascar's President Marc Ravalomanana was tested in February 2006.

UNAIDS estimates there are about 39,000 HIV-positive people in the island, but only 89 are receiving antiretroviral treatment. The government hopes the legislation will encourage HIV-positive people to come forward and make use of HIV services, and that more people will be tested, avoiding unknowingly transmitting the virus.

Not everyone is convinced, particularly about a clause that allows for up to two years in jail for transmitting HIV through "clumsiness, imprudence, carelessness, negligence, or failure to observe the rules".

"A law was necessary, but it is too unclear and not strong enough. In any case, it will not encourage me to publicly disclose my status," said an infected Malagasy who wished to remain anonymous.

It also remains to be seen how effective the legislation will be in a country where widespread stigma and discrimination persist, and few HI-positive people are willing to be open about their status.

"We have very important sensitisation work to do: some health workers refuse to treat these patients or use the [HIV/AIDS] material," said Hanta Razafiamanana, a welfare officer.

"The most important is not the law; it will be to make it known and make it respected," a person living with the virus pointed out during a support group meeting.

Efforts are underway to educate people about HIV/AIDS: the government hopes to have distributed 400,000 HIV test kits throughout the country by the end of 2007, the CNLS has set up smaller decentralised units in 22 regions, and screening centres in 116 districts.

Local development leaders, nominated by President Ravalomanana, and 17,000 Fokontany chiefs, who each head an administrative district, will be directly involved in efforts to battle the disease. These leaders will hold a two-day meeting, of which two hours will be devoted to discussing HIV/AIDS prevention.

The reformed church of Fiangonana Jesosy Kristy Madagasikara (FJKM), or the Community of Jesus Christ in Madagascar, which has 4,000 places of worship, has agreed to devote five minutes at the end of each Sunday mass to fighting discrimination against those infected with HIV.

"We have been working on this issue for a long time; this is just a new stage," said Pastor William Razafimahatratra, president of the FJKM's committee to combat AIDS.

"We preach abstinence and fidelity, but we are neither for nor against the condom," he said. "We regard it as a drug, and leave the education to the doctors."

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DRC: Stigma hampers fight against HIV/AIDS in South Kivu

2007-08-06T16:46:00.000+07:00

By, IRIN PlusNews, August 3, 2007

In the volatile eastern Democratic Republic of Congo (DRC), where people are often more concerned about their safety than HIV/AIDS, widespread stigma and discrimination are driving the epidemic underground, especially in the province of South Kivu.

"When my neighbours learnt that I was positive, they made sure that I was thrown out of the rental house I was living in with my wife and three children," said Borauzima Lukabia, 34, in Bukavu, the provincial capital.

"Because of being stigmatised and discriminated upon, we often lack the means to earn a livelihood," he said. "Take me, for instance: I am 34, yet I have no work; no one will employ me. My biggest problem now is hunger; I am on ARVs and this means I am hungry all the time, yet I have no means of earning a living."

Getrude Muhemeri, the director of Fondation Femme Plus, a national non-governmental organisation (NGO) offering support to HIV/AIDS infected and affected people, told PlusNews that most people living with HIV/AIDS had suffered greatly in the intermittent conflict in the province during the past 10 years.

"War-affected people are mostly very poor; those infected often have to face a lot of stigmatisation, in addition to all the other problems related to violence," she said.

Fear of rejection

Although Bukavu has an estimated population of half a million, a spot-check of NGOs supporting people living with HIV/AIDS showed that only a few thousand were being assisted, which most NGO officials attributed to fear of stigma and discrimination if the HIV-positive status of a person should become known.

"In conjunction with our partners [other NGOs and governmental organisations], we provide psychosocial support to people living with HIV/AIDS; we also sensitise the families of those infected to get them to accept their relatives, but is not enough, said Dr Alex Kabanga wa Kabanga, a medical supervisor at NGO Catholic Relief Services (CRS).

"More efforts need to be made to have whole communities sensitised against discriminating and stigmatising the infected," he said. Although most people in the province knew what AIDS was, many still shunned their relatives who had declared their status.

"When someone is told that their brother has HIV, their response is often one of fear and the desire to give up that person to be cared for by an organisation; they seem to want nothing to do with an infected person," Kabanga said.

"It is because of this fear of stigmatisation that a lot of people would rather not reveal their status."

Kiungi Safi, 34, and her husband, a soldier who is also HIV-positive, said stigma meant that the only house they and their three children could rent was in an area prone to flooding. "Because of this, my husband and I are always suffering from opportunistic diseases that we get whenever our house is flooded during the rainy season," she said.

"My family depends on the little salary my husband gets from the army ... about 10,000 Congolese francs [US$20]. It is not enough to ensure we have food, let alone trying to rent a house in a better neighbourhood and, anyway, we will be thrown out if a new landlord found that we had AIDS."

Kabanga said, "A lot of people who know they are infected do not own up [to their HIV-positive status] because they fear discrimination. They say, 'maybe my wife will leave me, my children will be shunned by the neighbour's children, who will no longer want to play with them, fearing they will get infected, or the landlord will throw me out'."

CRS has been operating in Bukavu since 2005 and works with a network of about 100 volunteers, sensitising those who may be living with the virus and do not know it, as well as the families of people who have declared their status, to promote acceptance and support in the community.

"We use volunteers who visit people's houses, VCTs [Voluntary Counselling and Testing centres], market places and other public areas, and our volunteers often have to make several visits to one area before people begin to open up."

Supporting HIV-positive people in Bukavu

The organisation's biggest project is known as AMITIE, an AIDS mitigation initiative that offers care and support to people living with HIV, as well as orphaned and vulnerable children (OVC).

Kabanga said they had recorded some 1,137 people living with HIV/AIDS in Bukavu, to whom they provided psychosocial support and referred to medical facilities and NGOS where they could get antiretroviral therapy. CRS also assisted 1,843 OVCs, 1,537 of whom were of school-going age, but it could only pay school fees for 770 of them.

"We should pay school fees for all these children but our funds are stretched; all of them need food, others need support to get vocational training, and others need legal aid to benefit from their late parents' properties."

He said an issue of great concern was providing food to people already on ARVs. "AMITIE is a four-year programme, and we hope that our donors [USAID] will increase its aid annually to cover all these needs," Kabange said.

The main donors to NGOs, like CRS and Fondation Femme Plus, who work with several other local and international organisations to support people living with HIV/AIDS in Bukavu, are USAID and the Global Fund on HIV/AIDS, Tuberculosis and Malaria. The government's National Multi-Sectoral Programme for the fight against HIV/AIDS, known by its French acronym PNMLS, is the coordinating agency for all the organisations dealing with HIV/AIDS.

Dieudonne Zirirane, the HIV programme coordinator for Association Sante Familial (ASF), a national NGO affiliated to Population Services International (PSI), said the NGOs working with HIV/AIDS met every month, under the chairmanship of PNMLS.

The major challenges in the fight against HIV/AIDS in South Kivu included the vastness of the province; insecurity, which hampered access to vulnerable communities; funding; an increase in sexual violence in war-affected communities; and a lack of adequate information.

Most of ASF's activities were focused on supporting the health of vulnerable communities, especially those infected and affected by HIV/AIDS, in four main programmes that covered HIV prevention, family planning, preventing malaria, and a safe water project.

PSI, in conjunction with ASF, ran several social mobilisation activities aimed at informing the public about HIV/AIDS. "We undertake these activities to break the barriers, so to speak, in a bid to demystify HIV/AIDS to the largest number of people," Zirirane said.

"We target commercial sex workers, soldiers and the police, demobilised soldiers, truck drivers, the youth as well as people belonging to various religious faiths."

Approaching the targeted groups was achieved mainly by peer education, and a small group in every target group was trained to inform their colleagues about HIV/AIDS.

"In the field, the peer educators give out reference cards to whoever wishes to visit a facility for testing and counselling; the cards have a list of medical facilities and VCTs centres, where potential patients who produce them get served free of charge," Zirirane said.

ASF-PSI also marketed affordable condoms via a network. "Condoms available in health centres and other public places are provided under a ministry of health programme, but we realised that a lot of people did not like the free condoms, so they prefer to instead go through our network where they get to purchase a pack of three condoms for 50 Congolese francs [US 10 cents]."

Zirirane said the prevalence rate among pregnant women had been found to be about three to four percent; two percent among those who donated blood; four percent among documented victims of sexual violence, and 20 percent among commercial sex workers.

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HIV does not discriminate - So why should we?

2007-05-11T10:12:00.000+07:00

By, Daily News (Sri Lanka), May 10, 2007

DEADLY INFECTION: HIV/AIDS is a deadly disease yet many of us are not educated about the disease. In fact many of us refuse to discuss this issue. It’s considered forbidden to talk about in public.

Wake up! It can happen to anyone! People who are infected with HIV/AIDS are amoungst us, yet they should not be treated differently. As a duty, be more sensitive towards those who are suffering from this virus. Take this initiative and learn a few things about HIV/AIDS.

HIV is the abbreviation used for the Human Immunodeficiency Virus.

It is the virus that causes AIDS (Acquired ImmunoDeficiency Syndrome).

AIDS is a life threatening disease. HIV infection becomes AIDS when you lose your ability to fight infections. People with AIDS are prone to develop various cancers such as Kaposi sarcoma, cervical cancer, and cancers of the immune system known as lymphomas AIDS kills about 2.9 million people a year or about one person in every 11 seconds.

The virus is passed from one person to another through blood to blood and sexual contact. This death toll includes a lot of children who are often infected with HIV virus during pregnancy or through breast feeding.

Sri Lanka has a relatively small number of HIV/AIDS. Unfortunately we have high risk behaviors that contribute to the spread of HIV. This makes our Lanka susceptible to infections.

The primary case of HIV infection was reported in 1986. HIV/ AIDS awareness and knowledge levels in poverty stricken communities remain drastically low. Educating women and men about HIV/AIDS is absolutely vital.

Once the immune system weakens, an HIV infected person can develop the following symptoms:

* Weight loss
* Lack of energy
* Frequent sweating and fever
* Yeast infections
* Skin rashes/ flaky skin
* Short term memory loss
* Mouth, genital sores from herpes infection.

AIDS is the most advanced stage of HIV infection. Nearly every organ is affected. Some of the common symptoms include the following:

* Cough and shortness of breath
* Seizures and lack of coordination
* Difficult / painful swallowing
* Confusion/ forgetfulness
* Severe and persistent diarrohea
* Fever
* Vision loss
* Abdominal cramps and vomiting
* Weight loss
* Severe headaches
* Coma

HIV tests look for antibodies in a person’s blood. When HIV enters a persons body antibodies are produced (antibodies are the body’s response to an infection). When a person has anti bodies it means they have been infected with HIV. However there is an exception.

An HIV negative baby was born to a positive mother. Babies hold their mother’s antibodies for upto 18 months and may test HIV positive even though they are HIV negative. This is why PCR (Polymerase Chain Reaction) test is performed after birth. This test finds either the genetic material DNA or RNA of HIV.

Do not feel embarassed to go and see a doctor or to undergo a HIV test. It’s your health at the end of the day that matters, not what people think of you.

Do not discriminate those suffering from AIDS. The rejection is often worse than the infection itself. I did an AIDS campaign along with Kumar Sangakkara and Dian Gomes. The campaign’s slogan was HIV does not discriminate - so why should we? Remember this thought always.

Source: http://www.dailynews.lk/2007/05/10/fea11.asp

MOZAMBIQUE: HIV-infected women blamed and shunned

2007-04-25T11:01:00.000+07:00

By, IRIN PlusNews, April 20, 2007

HIV/AIDS often has more devastating consequences for Mozambican women than it does for men. When the virus is detected, they are often accused of bringing HIV into the home, and may even be rejected or abandoned by their families.

"Because I had sores all over my body and my hair was falling out, my husband would say that I smelled like raw meat and he wouldn't sleep by my side. He began to get sick and my mother-in-law said that I was the one who infected him, but the only one I was with was my husband," said Sonio Costa [not her real name], from Tete Province in the northeast of the country.

"After our two last children died, he tried to look for another wife," added Costa, who was eventually abandoned by her oldest children as well.

Costa's experience is not unique. Joselia Mbanza, the national coordinator of Kuyakana, a network of HIV-infected women, told IRIN/PlusNews: "There are people who believe that everything bad that happens to women is punishment they deserve ... and men imagine that women are the cause of AIDS."

According to Mbanze, there are many cases of family members expelling infected women. Janana (not her real name), a member of Kuyakana, at first hid the fact she was HIV positive. "I had reason to fear," she recalled. "When I appeared on television, speaking about my HIV status, I was rejected by my community and my children were discriminated against."

Blame and discrimination

Maria Cecilia de Mendonça Pedro, a sociologist, believes that women are blamed for HIV/AIDS and a host of other health issues because of their inferior position in society.

"When the children are born with genetic problems, the mother is blamed; sexually transmitted diseases, too. When the couple lacks children, the woman is blamed and the husband has the right to return her to her parents, without looking into why she couldn't get pregnant," Mendonça said.

The common method of determining the rate of HIV infections by surveying pregnant women who visit antenatal clinics has had the unfortunate consequence of linking women to HIV in the minds of many people. Constant references to this statistic reinforce the perception that AIDS is a women's disease, a UNAIDS study pointed out.

In many families the virus is only discovered when a woman becomes pregnant and tests for HIV during her prenatal consultation. Fearing discrimination and abandonment by their families, many pregnant women either refuse to be tested or, if they test positive, hide the results from their husbands and are unable to take advantage of services to prevent mother-to-child transmission (PMTCT) of HIV.

According to UNAIDS, an estimated 30,000 children are born with HIV annually in Mozambique.

Impure

Mozambican anthropologist Cristiano Matsinhe describes in his recent book, Tabula Rasa, how commonly held beliefs perpetuate the blaming of women for HIV infections. After our last two children died, he tried to look for another wife.

Based on interviews he conducted in Tete, Matsinhe attributes the perception of women as "transmitters of HIV/AIDS" to their association with "states of impurity, danger and sickness".

He writes that menstruating women are considered particularly impure, and able to transmit sicknesses to men. "Under this logic, men are considered victims of women ... who consciously or unconsciously are disposed to spreading evil." Such beliefs have become even more pervasive since the arrival of HIV and AIDS, Matsinhe noted.

But according to Kuyakana's Mabanza, traditional beliefs about the sources of illness are not confined to men, which was demonstrated when Kuyakana attempted to assist a woman who had lost her husband to an AIDS-related illness in Maciene, in the southern province of Gaza.

She believed his death had been caused by 'mudjiwa', a sickness believed to be caused by spirits. After her husband's funeral, she submitted to 'kutchinga', a ritual that consisted of having sexual relations with one of her late husband's brothers.

Another woman, who was pregnant and HIV positive, and therefore eligible to receive antiretroviral treatment, had not attempted to obtain it because she believed she suffered from "a disease that lasts a century - a woman's disease", which was untreatable.

Kuyakana is training community and government leaders, particularly in rural communities, to counter such beliefs and persuade communities to accept those living with HIV.

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Source: http://www.irinnews.org/Report.aspx?ReportId=71727

KENYA: Legal reforms needed to protect HIV-positive people

2007-04-17T09:54:00.000+07:00

By, IRIN PlusNews, April 16, 2007

NAIROBI - Lack of adequate legal aid for Kenyans living with HIV could reverse advances made in the fight against the disease, the Open Society Initiative for East Africa (OSIEA) has said in a new report.

'Ensuring Justice for Vulnerable Communities in Kenya: a review of HIV and AIDS-related legal services' was launched on Monday by OSIEA, a regional offshoot of the Open Society Institute, founded by international financier and philanthropist George Soros to promote human rights and good governance through grants to civil society groups.

The 40-page document catalogues human rights abuses faced by HIV-positive Kenyans, from sexual violence and property-grabbing to police abuse and discrimination, and makes recommendations for improving their access to legal services.

"Suppose an HIV-positive widow needs antiretroviral treatment but has no money to pay for her transport to the health centre because she has been denied her property rights by her late husband's family," said Jonathan Cohen, director of the Open Society Institute's Law and Health Initiative. "In such a case, the burning issue is not access to health services but to human rights and legal representation."

Cohen said the report had uncovered "startling findings", including a severe shortage of lawyers and other representatives of the legal system in Kenya.

"There is usually just one magistrate and a visiting judge in each of Kenya's 71 districts," he said. "On average, victims of sexual violence have to make 15 court appearances in order to press their cases."

Although Kenya recently passed a law to protect the rights of people living with HIV/AIDS, and another one to protect survivors of sexual violence, the country lacks a state-sponsored legal aid system, leaving expensive private lawyers and charitable organisations to fill the gap.

"Just as it is possible to scale up HIV-related health services, such as condoms, antiretroviral therapy and palliative care, it is also necessary to scale up HIV-related legal services," Cohen said. "The AIDS epidemic provides new urgency for legal aid reform in Kenya."

Allan Ragi, director of the Kenya AIDS NGOs Consortium, a national network of AIDS organisations, said that despite the existing legislation there was little political will to provide legal support to people living with HIV.

He added that all vulnerable groups, including men who have sex with men and women who have sex with women, needed access to health services and legal protection.

"It is time we stopped burying our heads in the sand - these are our brothers and sisters," Ragi said. "They need constitutional protection, just like all other Kenyans."

The OSIEA report recommends that the government incorporate legal and human rights advocacy into existing HIV/AIDS programmes, and provide support to the traditional, informal justice system by educating traditional leaders about legal and human rights relating to HIV and AIDS.

"Legal aid needs to be placed high on the country's HIV agenda and, conversely, HIV must be placed high on the legal aid agenda," Cohen said.

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Pakistan battles HIV/Aids taboo

2007-04-11T11:14:00.000+07:00

By, Ashfaq Yusufzai, BBC News, April 9, 2007

Nearly 4,000 people with HIV/Aids have reported at treatment centres around Pakistan, government and World Health Organisation (WHO) officials say.

The figure is a fraction of the total number of Pakistanis with the virus.

A UNAids report last year said that between 80,000 and 140,000 people were infected - and the rate could spiral because of under-reporting of cases.

The WHO has been funding a three-year, $4.5m anti-retroviral programme in Pakistan since late 2005.

'Adultery'

The drugs for the programme are imported from India, and a number of doctors and nurses have been trained for the purpose in India and Italy.

An HIV-Aids newsletter of the Ministry of Health put the total number of reported cases at 3,933, but only about 618 of them were registered with nine treatment centres countrywide.

Pakistani officials say a low detection rate and stigma associated with the disease were hampering the treatment of HIV/Aids patients.

The problem is further compounded by a lack of awareness about the infection.

"People think it is exclusively caused by adultery, and are therefore reluctant to approach health services," says Quaid Saeed, WHO's national medical officer for HIV/Aids in Pakistan.

A joint study conducted recently by UNAids and the Aga Khan Univeristy in Karachi reported that 80% of known cases in Pakistan involved people who had been deported from the Gulf states for having Aids.

Lack of detection "may cause an Aids epidemic in Pakistan, especially among high-risk population sub-groups such as injecting drug users, sex workers and unsuspecting spouses," says Mr Saeed.

Specialist treatment

The WHO is trying to implement a plan under which prevention and treatment programmes would go hand in hand.

The treatment centres offer not only treatment, but also counselling sessions for patients and relatives.

"Unfortunately, prevention programmes take time to produce results and high risk sexual behaviour is not easily changed into safer practices," Mr Saeed says.

But of late there has been evidence that some sufferers are breaking their silence.

"An increasing number of patients are approaching us because they know they can receive specialist treatment which can prolong their lives," says Dr Yasin Malik, who is in charge of an anti-retroviral treatment centre in the north-western city of Peshawar.

Aids was detected in Pakistan in 1987 and has been spreading since.

The scale of the country's problem is dwarfed, however, by that in neighbouring India, which has more people living with HIV than any other country in the world.

According to UNAids, 5.7 million people had been infected there by the end of 2005.

UK visa screening 'unfair on HIV'

2007-02-05T10:04:00.000+07:00

The UK is discriminating against Kenyans with HIV by insisting that people who want visas be screened for tuberculosis, Aids activists say.

Inviolata Mbwavi of the Empowerment Network for People Living with Aids says those with HIV will be most affected by the directive.

TB is one of the diseases which often infects people with HIV, because of their weak immune systems.

The British embassy in Kenya says it is trying to halt the spread of TB.

It says the directive is already being implemented in Tanzania and Sudan.

From 5 February, visa applicants will be refused unless they have a certificate to show they do not have TB.

Medical experts say about 100,000 people in Kenya get tuberculosis annually.

"Tuberculosis is common among HIV-positive people and this means that they will not able to travel to Britain," Ms Mbwavi told the BBC.

"To us they are tactfully discriminating us and it's against international law."

More than 15,000 Kenyans, mainly students, apply for visas to travel to the UK each year.

Ms Mbwavi said Aids activists in Kenya will now launch a global campaign to push the UK to withdraw the directive.

Source: http://news.bbc.co.uk/1/hi/world/africa/6320015.stm

Enthusiastic caregivers and silent sufferers

2007-01-15T16:49:00.000+07:00

By, IRIN PlusNews, December 13, 2006

CABINDA - Fear of stigmatisation in Angola is keeping people living with HIV/AIDS in hiding. Caregivers are more than willing to help but are having a hard time finding patients to take care of.

"People prefer to keep silent and to die in silence," Ambrósio Cabral, coordinator of Angola's Red Cross HIV/AIDS programme, told IRIN/PlusNews.

Cabinda, Angola's oil-rich northern enclave, has a population of 350,000 and a 3.2 percent HIV infection rate. Out of the 16 homecare workers trained in the province this year, only five have work and care for a total of 12 people between them.

In those few cases, caregivers visit without wearing their Red Cross shirts and caps to avoid raising neighbours’ suspicions.

"The greatest shame is to have an AIDS-related death in the family, because it is associated with sex and witchcraft," said Evaristo Lucas Kanica, coordinator of the Red Cross HIV/AIDS programme in Cabinda.

PSYCHOLOGICAL BURDEN

Of the 10 patients that caregiver José Cuabi N'Zau has seen over the past year in Cabinda city, only two have disclosed their status to their families.

One hides his antiretroviral drugs in a suitcase, others take them secretly, most lie to their friends and family, and all of them hope that their caregivers will help keep their secret.

Some families demand caregivers reveal their relative's status. N'zau cares for a woman who keeps the fact that she and her daughter are HIV-positive from her husband. "It's morally difficult for me not to inform him," he said.

Secrecy and fear have become a psychological burden for caregivers: only they are aware of the truth. And because patients cannot talk to family and friends, caregivers are on call at any hour of the day or night to find food, to take a patient to the hospital, to be there when a patient becomes depressed or just simply for company.

Caregivers receive US $30 per month to look after 10 people - "it's a great deal of work and a great responsibility," Kanica said.

Established in 2005, the homecare programme in Cabinda aims to link into Voluntary Counseling and Testing (VCT) with work done by the Central Hospital and the Catholic and Methodist churches in the hope they will refer HIV-positive people to their services.

"The church is a [safe place] for the Angolan people, where they can say what they cannot share with their family," explained Casal.

KWANZA NORTE

With 16 trained caregivers and no one to care for, the situation is similar in Ndalatando, the provincial capital of Kwanza Norte.

No one who is HIV-positive has disclosed their status in this northern province. According to Salvador João Zimba, provincial secretary for the Red Cross: "People who are infected in the provinces hide themselves".

"Our concern is finding those who live with HIV," Zimba said. Ndalatando’s only VCT center opened two months ago and people are still fearful to talk about HIV/AIDS.

Some 180km from Ndalatando, in the province of Dondo, things are the same: caregivers are ready to help but people living with HIV/AIDS refuse to reveal themselves.

The prevalence rate in Dondo is less than one percent and the national average for Angola's 14 million population is almost four percent. UNAIDS estimates that between 100,000 and 600,000 Angolans live with the virus.

NEW DEVELOPMENTS

Home-based care has only just taken-off in Angola, an indication of the growing response to HIV/AIDS following the end of the 27-year civil war in 2002.

While the epidemic is a relatively recent phenomenon and the average prevalence rate is relatively low, the number of people falling ill is growing and beginning to overwhelm hospitals.

In October, in Angola's capital Luanda, IRIN/PlusNews encountered a patient in the final stages of AIDS who spent 24 hours in a wheelchair on a drip waiting for an empty bed in the AIDS ward of the Américo Boavista Hospital. She had been employed as a domestic worker and her employer had bought all her medicine, including serums, needles, antibiotics, vitamins, and anti-malarial drugs. She died three weeks later.

"The doctor never spoke with her family about the matter. She was just another 'animal' in a bed in some hospital," the woman's former employer, speaking anonymously, said.

In 2007, the Red Cross intends to expand their caregiver programme to all of Angola's 18 provinces, training 200 workers to tend to 2,000 HIV-positive people and their 14,000 family members.

This year, the Angolan Network of AIDS Service Organisations (ANASO) with the support of the Global Fund to Fight AIDS, Tuberculosis, and Malaria trained a total of 85 caregivers from the different provinces during two seminars. A third will be held in January.

ANASO intends "to create a new dynamic to fight stigma in communities so that people feel they can reveal their sickness to their families and accept their condition," the group's secretary-general, António Coelho, said.

Until that happens, caregivers and patients will have to keep their secrets.

[Produced in partnership with the International Federation of Red Cross and Red Crescent Societies: www.ifrc.org]

[ENDS]

Source: http://www.plusnews.org/AIDSreport.asp?ReportID=6611&SelectRegion=Southern_Africa&SelectCountry=ANGOLA

Lifting the veil of AIDS taboo in Egypt

2006-12-07T10:48:00.000+07:00

By, Middle East Online, December 1, 2006

About 2,115 cases of HIV/AIDS reported to health ministry since 1986, UNAIDS reckons number is higher.

CAIRO - Souad never suspected how much her life was about to change when she was summoned four years ago by the Ministry of Health and Population to test for HIV/AIDS. There she was told that her husband had been tested positive for the virus two years earlier.

"He never told me," she said. “He continued to live with me as if nothing had happened.”

Shortly afterwards, she, too, tested positive for HIV.

"In the beginning, I would look into it the mirror for changes in my appearances, thinking that I would die soon," said Souad, who asked not to be identified by her real name.

"But later, I realised I wasn’t alone; that there were many people in Egypt suffering from the same condition."

Altogether, 2,115 cases of HIV/AIDS have been reported to the health ministry since 1986.

However, UNAIDS reckons the infection is much more widespread in this country of 77 million people.

It estimated there were 12,000 HIV positive people in the Arab world’s most populous country at the end of 2003.

According to the UN 2005 Common Country Assessment of Egypt, 64 percent of all reported HIV infections in the country were caused by heterosexual intercourse, while 31 percent were the result of infected blood.

All blood donors in Egypt are now screened for HIV, so blood transfusion has been virtually eliminated as a source of new infection, but doctors suspect that many people are still contaminated by dirty needles in routine medical injections.

The official statistics register very few mother-to-child transmissions and hardly any infections arising from homosexual intercourse between gay men.

Few women are tested

About 80 percent of all HIV-positive people registered with the Health Ministry are men.

But experts say this statistic is misleading because it is not based on the testing of a broad cross section of Egyptian society and because women are less likely to come forward for testing than men.

“This figure does not reflect the true prevalence rate among women in Egypt,” said Doctor Ehab Salah, of the health ministry’s National AIDS Programme (NAP).

He said most HIV infections detected so far had been revealed by screening blood donors and applicants for work permits, both foreigners coming into the country and Egyptians seeking work abroad.

“These are mostly male, so the chances of us learning about their infection is much higher than it is for women,” he noted.

Nana Ahlmark, an AIDS coordination officer with the United Nations Development Programme (UNDP) in Egypt noted that women were generally more vulnerable to HIV infection than men.

"This is not only related to biological factors, but also to the fact that women are more likely to lack access to education and health care," she said.

Souad, who is now living with AIDS, said women were generally reluctant to come forward for voluntary HIV testing because the stigma associated with the virus in Egypt is much greater for women than it is for men.

“If a woman has the virus, people immediately assume she got it from some kind of sexual transgression,” she said.

Still no strategic plan

Although Egypt is still reckoned to have a very low HIV prevalence rate of only 0.01 percent, Salah at the National Aids Programme, says this is no excuse for complacency.

“The fact that we have a low prevalence rate doesn’t necessarily mean we’re safe,” he said. "If we don’t take strong preventive measures, the epidemic will spread."

The United Nations Children’s Fund (UNICEF) reckons that a fifth of Egypt’s population – some 15 million people – are vulnerable to contracting the virus that causes AIDS.

And UNAIDS expressed concern in its 2004 report on Egypt that the country still did not have a National Strategic Plan for dealing with the pandemic.

“Development of a plan must be the priority in 2005,” it said.

Salah, at the government’s National AIDS Programme, said this plan was still being formulated. But he pointed out that the NAP had already made a start in tackling AIDS on the ground.

In 2004, the NAP opened its first Voluntary Testing and Counselling Centre in Cairo, where people can be tested for HIV without having to submit any personal information.

The organisation currently runs five HIV-testing centres nationwide and has nine vans to take mobile testing facilities out to smaller towns and villages.

Salah said these centres not only encourage people to get themselves tested, they also help to establish the profile of groups to be targeted in future AIDS awareness campaigns.

"We ask them questions about their educational background and their age," he explained.

Since the beginning of 2005, NAP has also provided free antiretroviral (ARV) treatment for about 100 people living with AIDS.

ARV drugs do not cure AIDS, but they can improve the health of people suffering from the disease and prolong their life. And crucially they give hope to people who until now suspected that AIDS would only lead them to an early death.

“Now that people are becoming more aware of the existence of medication for the infection, they are more willing to test for HIV/AIDS,” Salah said.

However, ARV drugs cost about US $2,500 per month to buy over the counter in pharmacies in this country where the annual per capita income is just $1,390, so few Egyptians can afford to buy them without the help of an official subsidy.

Salah said the NAP wanted more Egyptians living with AIDS to come forward to benefit from the opportunity of free ARV treatment, but he gave no target figure.

NAP has produced a series of publications to explain HIV/AIDS to ordinary people along with several NGOs, it is trying to break down the social stigma commonly associated with the infection.

Fear and prejuidice is deep-rooted

But the activists still have a long way to go in conquering fear and prejuidice.

"In one survey, over 70 percent of respondents did not think People Living with HIV/AIDS should be allowed to continued to work. A sample study of secondary-school students revealed that 72 percent of them wouldn’t sit next to someone who was HIV-positive," Ahlmark remarked.

Doctor Sanni Youssef, an AIDS counsellor in the Mediterranean port city of Alexandria, told the story of one 24-year-old shopkeeper he knew who was forced out of business when his customers discovered that he was HIV positive.

"People just stopped buying from his store and he went bankrupt," he said.

After first being tested positive for HIV/AIDS, people are often struck with a sense of fear and isolation. This is largely due to a general lack of awareness about the virus and its characteristics.

"At first I didn’t know much about the disease, or how to live with it,” recalled Souad. “I was afraid to touch my friends and family for fear of infecting them."

However, for the past year, she has had access to a support group run by the Roman Catholic charity Caritas in Alexandria.

Youssef, who heads the Caritas support group, said that patients meet in the support centre twice a month to discuss their concerns.

"Through these gatherings, we provide advice and psychological assistance to help people accept their illness and live a normal life," he said.

Because of Egypt’s relatively conservative Muslim society, however, some AIDS prevention issues pertaining to contraception and safe sex remain sensitive.

Condoms are readily available at local pharmacies, but their use is not widely encouraged.

"We have to be culturally aware when tackling such issues," said Salah at NAP.

“We live in a country where open discussion on sexual matters isn’t the norm, so launching a strong campaign on safe sex can end up exaggerating the prevalence of HIV/AIDS among the public and cause panic,” he explained.

Since the Caritas support centre opened in Alexandria in 2003, it has helped approximately 100 patients come to terms with their condition and reintegrate into society.

Youssef conceded that this was a relatively small number, but he pointed out that attendance at the group’s sessions had been increasing steadily.

Now he is planning to launch a series of new counselling groups run by people living with HIV/AIDS who have already received counselling themselves.

Youssef concedes that Egypt is not yet ready for people living with HIV/AIDS to bring themselves into the open.

“They have to keep it a secret,” he said, calling for a strong media campaign to help break down the ignorance and social prejuidice that still forces HIV-positive people to live in the closet.

Source: http://www.middle-east-online.com/english/?id=18582

Stigma remains greatest hurdle in Kenya's fight against AIDS

2006-12-06T16:19:00.000+07:00

By, Karen Calabria, Agence France Presse, December 1, 2006

NAIROBI (AFP) - Three-year-old Ibraham Akinyi pushes a toy car made of scrap metal across a makeshift wooden table, oblivious to the horrors that befell his mother, Beatrice, after his father's death from AIDS in 2003.

"Two days after my husband's funeral, a group of his relatives, including his father, came to my house and forced their way inside, pretending to be drunk," the HIV-positive mother-of-two recalls as she sits in her one-room, mud-walled home in Kibera, sub-Saharan Africa's largest slum.

"They told me, 'Get out and go, take the kids.' They said not to pack anything, it all belonged to them and then tore the whole house down because they blamed me for his death," said Akinyi, 29, who suspects her philandering husband became infected by one of his many girlfriends.

Akinyi was diagnosed in 2003 during her pregnancy with Ibraham, who narrowly escaped infection after a course of anti-retroviral (ARV) treatment. But her firstborn son, Clinton, 9, was not as fortunate and has tested positive.

The single mother is one of the 1.3 million people -- in this country of nearly 35 million -- currently living with HIV/AIDS in Kenya, 65 percent of whom are women between the ages of 19 and 45, according to National AIDS Control Council statistics.

Since 1984, at least 1.5 million people are said to have died from AIDS in Kenya, according to health ministry estimates.

Awareness campaigns have succeeded in reducing Kenya's HIV/AIDS prevalence rate to six percent in 2006 from 10 percent in the late 1990s, with condom use rising and a decline in the average number of sexual partners, according to a UN report.

But HIV-positive Kenyans, like Akinyi, are often stigmatized by strangers and family alike who remain ignorant about the transmission and symptoms of the disease.

Since relocating after her husband's death to the capital from her hometown of Kisumu on the shores of Lake Victoria, Akinyi has taken care not to let on she is infected with the virus, fearing similar reprisals from her neighbors.

"I can't tell anyone because I fear for my children and how they would be treated by others," Akinyi said. "My neighbors are already suspicious and are wary of me."

"When people know you're infected with the disease, they fear many aspects of the communal living typical in the slums -- sharing water or toilets, shopping at the same stores," said Dennis Oduor Omondi, an HIV/AIDS counselor with African Medical and Research Foundation (AMREF).

Despite the country's best efforts to educate people about HIV/AIDS prevention and treatment, Omondi said he believes there are large numbers of Kenyans, especially in poor areas, unaware of how it is transmitted.

"They don't understand that they can't get it through greeting someone, touching someone, even breathing the same air," he said. "Stigma prevents people from getting educated about the disease and helps spread it further."

Anne Muthoni, a widowed 33-year-old, echoes Akinyi's concerns that her childrens' future would be adversely effected if she were to disclose her HIV status to her friends and neighbors.

"I don't want my children to suffer, to be teased or beaten up by their peers," said Muthoni, who became infected after she turned to prostitution to support her five children when her husband died of malaria in 1998.

Despite making small strides in the fight against the epidemic, better integrating those living with HIV/AIDS into the community and reducing the stigma attached to the disease remains one of the biggest hurdles, according to Charles Kaduwa, a program officer for Women Fighting AIDS in Kenya.

"Stigma prevents people from going for tests, from seeking treatment, from disclosing their HIV status to sexual partners or spouses," he told AFP. "It helps the epidemic to spread and stigma helps people infected with HIV die."

Source: http://news.yahoo.com/s/afp/20061201/hl_afp/healthaidskenya_061201203317

AIDS stigma hurdles to treatment

2006-12-04T13:26:00.000+07:00

By, The Statesman (India), December 1, 2006

NEW DELHI: The current efforts to fight AIDS, including international commitments to achieve universal access to it’s treatment by the year 2010, will all fail if the pervasive stigma faced by people living with HIV is not tackled more aggressively.

According to ‘Unveiling the truth’ a new report to be released globally on World AIDS Day (1 December), hospitals, clinics and other health care settings are among the places where people living with HIV still experience some of the worst HIV-related stigma. This report is a joint publication by Health and Development Networks and the global AIDS Care Watch Campaign.

“Stigma and discrimination are the two major hurdles that continue to hamper rehabilitation of people infected and affected by HIV in India” says India contributor to this report, Swapna Majumdar. She also stated that for women and girls the degree and impact of this stigma is much higher.

The stigma associated with HIV works as a barrier to avail the medical advances. Thus preventing people from accessing testing or treatment services. “A few days ago, it was getting impossible to get treatment for a HIV positive pregnant lady in the particular centres set for them. Doctors too fear infection. If health facilities are not made available then most of the HIV patients will be mortified to go for AIDS test” added Anjali Gopalan, an AIDS activist running a home for HIV positive people.

"The continuing presence of stigma represents a failure in HIV policy-making and programme design. All HIV policies, programmes and services should address the impact of HIV stigma, and improving the attitude of health workers is particularly important to restoring the element of hope about AIDS." says Nadine France, Director of Health & Development Networks, Unveiling the Truth.

To this adds Celina D’Costa, another AIDS activist, “most of the people in India are reluctant to access HIV testing services because of stigma and the fear of losing life associated with a positive diagnosis”.

“To reduce HIV-related stigma, we must very honestly look at the realities that health workers face and try to understand the epidemic from their personal perspective” said Aditya Bandopadhya, an AIDS activist.

http://www.thestatesman.net

Stigma remains greatest hurdle in Kenya's fight against AIDS

2006-12-04T11:13:00.000+07:00

By, muzi.com, December 1, 2006

Three-year-old Ibraham Akinyi pushes a toy car made of scrap metal across a makeshift wooden table, oblivious to the horrors that befell his mother, Beatrice, after his father's death from AIDS in 2003.

"Two days after my husband's funeral, a group of his relatives, including his father, came to my house and forced their way inside, pretending to be drunk," the HIV-positive mother-of-two recalls as she sits in her one-room, mud-walled home in Kibera, sub-Saharan Africa's largest slum.

"They told me, 'Get out and go, take the kids.' They said not to pack anything, it all belonged to them and then tore the whole house down because they blamed me for his death," said Akinyi, 29, who suspects her philandering husband became infected by one of his many girlfriends.

Akinyi was diagnosed in 2003 during her pregnancy with Ibraham, who narrowly escaped infection after a course of anti-retroviral (ARV) treatment. But her firstborn son, Clinton, 9, was not as fortunate and has tested positive.

The single mother is one of the 1.3 million people -- in this country of nearly 35 million -- currently living with HIV/AIDS in Kenya, 65 percent of whom are women between the ages of 19 and 45, according to National AIDS Control Council statistics.

Since 1984, at least 1.5 million people are said to have died from AIDS in Kenya, according to health ministry estimates.

Awareness campaigns have succeeded in reducing Kenya's HIV/AIDS prevalence rate to six percent in 2006 from 10 percent in the late 1990s, with condom use rising and a decline in the average number of sexual partners, according to a UN report.

But HIV-positive Kenyans, like Akinyi, are often stigmatized by strangers and family alike who remain ignorant about the transmission and symptoms of the disease.

Since relocating after her husband's death to the capital from her hometown of Kisumu on the shores of Lake Victoria, Akinyi has taken care not to let on she is infected with the virus, fearing similar reprisals from her neighbors.

"I can't tell anyone because I fear for my children and how they would be treated by others," Akinyi said. "My neighbors are already suspicious and are wary of me."

"When people know you're infected with the disease, they fear many aspects of the communal living typical in the slums -- sharing water or toilets, shopping at the same stores," said Dennis Oduor Omondi, an HIV/AIDS counselor with African Medical and Research Foundation (AMREF).

Despite the country's best efforts to educate people about HIV/AIDS prevention and treatment, Omondi said he believes there are large numbers of Kenyans, especially in poor areas, unaware of how it is transmitted.

"They don't understand that they can't get it through greeting someone, touching someone, even breathing the same air," he said. "Stigma prevents people from getting educated about the disease and helps spread it further."

Anne Muthoni, a widowed 33-year-old, echoes Akinyi's concerns that her childrens' future would be adversely effected if she were to disclose her HIV status to her friends and neighbors.

"I don't want my children to suffer, to be teased or beaten up by their peers," said Muthoni, who became infected after she turned to prostitution to support her five children when her husband died of malaria in 1998.

Despite making small strides in the fight against the epidemic, better integrating those living with HIV/AIDS into the community and reducing the stigma attached to the disease remains one of the biggest hurdles, according to Charles Kaduwa, a program officer for Women Fighting AIDS in Kenya.

"Stigma prevents people from going for tests, from seeking treatment, from disclosing their HIV status to sexual partners or spouses," he told AFP. "It helps the epidemic to spread and stigma helps people infected with HIV die."

Source: http://dailynews.muzi.com/news/ll/english/10027762.shtml

In Africa, HIV Stigma Lives Off Silence

2006-12-01T11:33:00.000+07:00

By, Masimba Biriwasha, Ohmy News - International Global Watch, December 1, 2006

"HIV is just like any other disease and until people accept and tackle it, we will continue to be reduced in numbers like animals drinking from a poisoned well." Sazini Ndlovu, a sex worker and member of the Hwange AIDS Project, The Daily News [Zimbabwe], Aug. 15, 2001

HIV stigma is a social construction founded on a mixture of myths, misinformation, fear and ignorance, as well as some real life experiences of the disease. In spite of the bio-medical and social work that has been done to fight HIV, stigma and discrimination remain like two towers blocking progress. The fight against HIV will not be won on the medical front if the social phenomena that propagate the disease are not addressed.

In Africa, a continent where HIV is predominantly transmitted through heterosexual sex, being HIV positive is seen as a sign of promiscuity. Being infected is seen as a curse and in such a context naturally carries shame with it.

Lack of access to antiretroviral (ARV) drugs and other therapies that prolong life for people living with HIV (PLHIV) has only worsened levels of stigma within society. HIV is perceived as a death sentence. Many people are afraid of the disease, and they turn their fear into disdain and discrimination of anything associated with HIV, including people living with the disease.

In many instances, people who are open about their status are poor and impoverished. This has a major impact on the negative perception of PLHIV, who are stigmatized not only for carrying the virus but also for their poverty. As a result, most prefer to die slowly in silence.

People's experiential knowledge of HIV in Africa often consists of the pain that they have seen their loved ones experience as they die of the disease, and this undoubtedly influences their attitude. Many people prefer to live without knowing their HIV status. The majority of infected people in Africa do not live with HIV, instead, they die of the disease, intensifying the belief that to have HIV equals death. The conspiracy of silence surrounding the disease is so entrenched and pervasive that burials often happen without a single mention of the disease.

Due to the nature of the illness, people with AIDS may need a great deal of intensive care and support. If these people are to receive the expert and compassionate care that they undoubtedly deserve, one paramount issue that has to be addressed is that of stigmatization and coping behaviors among health care workers. When caring for the chronically ill, unprejudiced, sympathetic and comprehensive care is essential as it helps maintain psychological health, and prevents pain and suffering.

In most African countries, the health care infrastructure has inadequate facilities, inadequate manpower and poor logistics such as drug supplies and other equipment. Low quality of services has further worsened the levels of stigma within society. High levels of poverty also prevent the infected and affected from accessing services. In many local settings throughout Africa, HIV is frequently still equated with hopelessness and death.

Such perceptions of HIV have fueled prejudice towards people living with the virus. Where there is stigma against PLHIV, they retreat, driven by both internal and external stigma. As a result, millions of people living with HIV are at risk of infecting their partners because stigma forces them to choose silence.

Stigma discourages infected and affected people, and their partners and families, from seeking counseling and other services that may prolong their lives. According to UNAIDS executive director Dr Peter Piot: "It is unfortunate that we are still hampered by our old enemy: stigma. Eliminating stigma must be central. It is about breaking silence, and breaking silence means breaking secrecy, not confidentiality, about AIDS."

Breaking the culture of secrecy about HIV is essential in combating stigma. An intensive and appropriate communication campaign could go a long way to reducing stigma in Africa. The media is central to such an initiative. Such a program would have to utilize all the channels available to encourage a positive change in the perception of HIV. Otherwise, HIV stigma will remain the biggest hidden killer in African today.

Until people in Africa accept and tackle HIV just like any other disease, they will continue to be reduced in numbers like animals drinking from a poisoned well.

Source: http://english.ohmynews.com/articleview/article_view.asp?at_code=376706

Indian state to adopt workplace HIV policy - report

2006-11-20T09:56:00.000+07:00

By, Reuters Foundation, November 19, 2006

MUMBAI - India's western state of Maharashtra is set to introduce a policy aimed at curbing discrimination against HIV-infected workers, a leading newspaper said on Sunday.

It would cover areas such as recruitment, transfers and promotions, and would be applied first in all state government offices, the Hindustan Times said, quoting Maharashtra's health secretary, Vijay Satbir Singh.

The state would ask private-sector firms to adopt the policy after a few months, the paper said.

"Authorities who know about the HIV-positive status of an employee would be required to keep it confidential," Singh was quoted as saying.

There are an estimated 650,000 HIV-infected people living in Maharashtra, India's wealthiest state. The policy, the first for an Indian state, was likely to be announced on Dec. 1 to coincide with World AIDS Day, the paper said.

India recently overtook South Africa as the country with the highest number of people living with HIV -- an estimated 5.7 million, according to the United Nations.

Although India reported its first case 20 years ago, it has yet to enact a law to prevent discrimination against patients, many of whom face acute stigma at home and in the workplace.

General provisions in the Indian constitution against discrimination only apply to the government, state agencies and the public sector, and not private firms, where much of the hostile treatment of HIV-positive people is reported to occur.

LIBERIA: Stigma blunts AIDS action

2006-11-14T13:49:00.000+07:00

By, IRIN PlusNews, November 10, 2006

GANTA, 10 November (PLUSNEWS) - The bustling commercial town of Ganta, a five-hour drive from the Liberian capital, Monrovia, is emblematic of the AIDS challenge facing the country as it rebuilds after 14 years of civil war.

Ganta is the hub of trade and travel with eastern neighbours Guinea and Cote d'Ivoire, sucking in investment and people looking to make quick money. But the factors driving its recovery threaten to undermine its long-term stability. "Everything passes through here; there are visitors every day and the popuation is growing - we do expect an increase in AIDS infection," said Dr Albert Willicor at the United Methodist Hospital, the main health facility in town.

Newly elected President Ellen Johnson Sirleaf is committed to Liberia's recovery and reconstruction, but the challenges are enormous in a country of three million people and an annual budget of just US$129 million.

"The new government is very promising and well-liked here and overseas," said Susan Thomas, field coordinator for Medecins Sans Frontieres (MSF)-Switzerland in Saclepea, 40km from Ganta. "But when you think how much was destroyed during the war ... if you scratch the surface you see you cannot even post a letter."

The war not only stopped effective HIV/AIDS awareness campaigning, but the trauma of the conflict and the aftermath of poverty and joblessness has had a "deep psychological impact", according Rev John Togba, a genial and energetic HIV/AIDS counsellor at the Methodist Hospital.

"Girls are out of school, maybe the only sponsor they had was killed, and they often have no other option but to end up in prostitution," said Togba. "Sometimes it's the parents who push the child out on the streets: 'your friends are bringing home bags of rice, why aren't you?'."

Ganta's Nimba County is one of the main destinations for refugees, still returning three years after Liberia's warlords made peace. "Ninety percent of them are poor; most of them are single women," said Berkone Nagga, protection officer for the UN refugee agency, UNHCR, at Saclepea. "The women lost their men during the war or were divorced. Many of them have nothing except what we give them - it makes them very vulnerable."

It is not that people are unaware of AIDS; everybody IRIN/PlusNews spoke to in Ganta's main market had heard that condoms can prevent HIV infection, and several people mentioned unsterilised medical equipment and mother-to-child transmission as other likely routes for the virus.

The laidback owner of the motel next to Planet 44 - a popular new music bar on the main street, insisted that he handed out condoms to all guests who asked for them. Susan Habbah, who turned heads as she strolled by, said: "I just want to advise my friends on the street, 'stay at home, God will provide.'"

Despite assurances of their personal commitment to safe sex, there was much less conviction on how widespread condom use was among others. "Liberians like skin-to-skin, flesh-to-flesh," was a cliché that cropped up in most conversations on the issue. Apart from an antipathy to latex, there was the more practical problem of availability - neither of the two pharmacies visited had any on the shelves.

Sempti Menown, a young and opinionated motorbike taxi-driver, underlined clearly that awareness was not synonymous with acceptance. Describing HIV/AIDS as a "false religion", he added: "I need to be convinced that AIDS exists; people need to show me somebody with it."

The problem is that he is far from alone in his denial. For community radio journalist Pauline Biddle, AIDS was something that happened elsewhere, not in Ganta. It was only when she heard an HIV treatment programme was about to start at the Methodist Hospital under Dr Willicor's supervision that it dawned on her that "AIDS is here".

At the moment Liberia has no national HIV prevalence figure. Among health workers the estimates for HIV infection vary between 5 percent and 10 percent, but all agree that the stigma attached to AIDS will stoke the epidemic unless addressed.

"There's a lot of fear and a lack of knowledge," said MSF's Thomas. "We're at the very early stages of HIV intervention, we're starting from the very bottom."

Togba said 25 of his patients had been diagnosed as HIV positive since March - roughly four a month - most of them having lived at some stage in Cote d'Ivoire or Guinea. They did not come for testing voluntarily, but were identified through blood screening or clinical signs. "There is a problem of confidentiality, that is what people are really concerned about - confidentiality and stigma."

For close to a year Dr Willicor has been preparing for the launch of a treatment programme at the Methodist Hospital. In October he took delivery of the first consignment of antiretroviral drugs from the National AIDS Control Programme, but the initiative was delayed when the first patient selected for therapy pulled out.

"She was so enthusiastic - I had told her it was free; it would be confidential," he said, shaking his head.

"What's needed is more education, done with patience, and it has to be persistent," said Togba, who started counselling only in 2005. "The schools have to be involved and the churches too, and we also need visual AIDS: talking is effective, but seeing is more effective."

oa/he
[ENDS]

INDIA: New study reveals HIV/AIDS stigma in hospitals

2006-11-08T15:36:00.000+07:00

By, IRIN PlusNews, October 24, 2006

India's growing HIV/AIDS pandemic is putting more pressure on hospitals to provide improved levels of care, but prejudice among medical staff against HIV-positive people is keeping those most in need away, according to a recent report.

'Reducing AIDS-related Stigma and Discrimination in Indian Hospitals', is being viewed with interest by policy makers and practitioners in India, as stigma and discrimination against people living with the virus threaten to derail official efforts to contain the epidemic.

The study was conducted by HORIZONS, a global research programme affiliated with the Population Council, a US-based reproductive health nongovernmental organisation (NGO), in conjunction with SHARAN, an Indian NGO, and the Delhi-based Institute of Economic Growth.

Researchers spoke to doctors, nurses, hospital administrators, managers and people living with HIV and AIDS and their caregivers at one private and two state-owned hospitals in the capital, New Delhi, between 2002 and 2004.

In one interview, a doctor is quoted as saying, "High-risk population means lower class people - they live in slums, in unhygienic conditions; they sleep with anybody and everybody, extramarital affairs are common, and also drug users and sex workers come into this category." Another doctor commented, "There is a separate bed which is earmarked for an HIV-positive patient, and I see to it that it is not used by any other patients."

Several people living with HIV and AIDS who participated in the study said their common experience was denial of care, delay in treatment and multiple referrals.

"The doctor refused to examine me for almost two months - he even stopped doing my dressing. He just told me to continue with my medicines. He also referred me to another hospital for an operation that he would not do, as it would be too costly for me," one HIV-positive respondent told the researchers.

There were mixed reactions among staff regarding counselling and testing practices. Nurses at one hospital said mandatory testing was carried out, especially for those requiring surgery or invasive procedures, but doctors did not ask for consent and the patient was not provided with professional counselling, as there was no trained HIV/AIDS counsellor in the hospital. They commented that many patients would not have been able to understand the form, or would have refused to be tested if they had been asked.

Much of the discrimination was due to inherent prejudices against those infected with HIV, but the difference in treatment given to people living with the virus also stemmed from a lack of knowledge and inadequate institutional support for infection control.

Although the infection control committees in each of the hospitals had guidelines, and the staff had undergone training, their knowledge was often outdated.

"New knowledge about safeguarding staff was not always shared with all staff members. For example, the staff interviewed had low awareness about post-exposure prophylaxis (PEP) and its potential to reduce the risk of infection following potential exposure to HIV. Most of the staff interviewed were not aware if PEP was available in their hospital or how to access it," the report said.

The findings have raised concerns about patients being tested for the HI virus without giving informed consent.
"Guidelines by NACO [National AIDS Control Organisation] are clear. Doctors have to explain the issues to a person before he/she can be tested for HIV. Testing cannot be done unless he/she agrees," said Arti Malik, advocacy officer at the Lawyer's Collective HIV/AIDS Unit, an Indian legal aid group.

Malik pointed out that fear prevented more instances of hospital discrimination against HIV-positive people from coming to light. "We are willing to take up the cases, but not too many HIV-positive people are willing to take a government institution to court on grounds of stigma and discrimination. We have much anecdotal evidence, such as a recent case of an HIV-positive pregnant woman who was denied a bed in a government hospital in Delhi and who slept on the floor. The child died but the woman did not file a case. Instead, she went back to her village."

The findings were also used in pilot approaches to motivating hospitals to become more caring towards HIV-infected people. For example, a PLHA-friendly Checklist' (people living with HIV and AIDS) was developed as a self-assessment tool for hospital managers to identify institutional strengths and weaknesses in services for HIV-positive people, and evaluate hospital policies and procedures to protect staff from the risk of exposure to HIV. Hospitals were then assisted to develop 'action plans' to improve the situation.

After the pilot intervention, "doctors were more likely to agree that patients should not be tested for HIV without their consent. They also were more likely to seek informed consent ... [when] they ordered an HIV test" the report noted. After the pilot project a greater proportion of doctors and nurses said HIV-positive individuals had the right to decide who should know their status, but this was not the case among ward staff.

HORIZON's Vaishali Mahendra hoped the findings would have a significant impact in public hospitals. India's National AIDS Control Organisation, for example, has endorsed the PLHA-friendly Checklist to be used in all public hospitals, and the report has been disseminated to all the State AIDS Control Societies in the country.

[ENDS]

Source: http://www.irinnews.org/AIDSReport.ASP?ReportID=6481&SelectRegion=Asia&SelectCountry=INDIA

SIERRA LEONE: Stigma and fear prevent uptake of vital services

2006-10-30T16:23:00.000+07:00

By, Emily Bell, IRIN PlusNews, October 30, 2006

FREETOWN, 26 October (PLUSNEWS) - Stigma against HIV/AIDS and fear of learning one's status are slowing the uptake of free testing and treatment services in Sierra Leone.

The focus of the national response so far has been on increasing people's awareness of the basic facts of HIV/AIDS. But the concept of voluntarily discovering one's HIV status is largely alien, despite the availability of free testing at all district hospitals and a number of sites in the capital, Freetown. Most people only learn what their HIV status is after being referred for testing by their doctor.

According to a national HIV seroprevalence survey published this year, an estimated 1.5 percent of the country's roughly five million people are HIV positive.

Widespread stigma is also preventing those who know they are positive from accessing treatment services and seeking support from family and friends.

Antiretroviral (ARV) drugs are available free of charge in Sierra Leone, but the government's treatment programme is unlikely to meet its target of reaching 2,000 people by the end of 2006. Currently, only 1,178 people are receiving ARVs at public health facilities.

Arnold Macauley, acting director of the HIV/AIDS Care and Support Association (HACSA), recalled receiving his positive test result in the company of his HIV-negative fiancée in 2005 and being told by the counsellor that "this is the disease you get from being promiscuous".

The misconception that HIV can only be contracted through promiscuous behaviour or illicit sex is one of many reasons the disease is stigmatised in Sierra Leone, he said. Other mistaken beliefs include the idea that HIV is linked to bestiality or is only spread by homosexual acts.

According to Macauley, the media has not helped to dispel myths about how the virus is transmitted or the view that people living with HIV are a "living curse". As a result, self-stigmatisation is a significant problem for people living with the virus and the focus of one of HACSA's main interventions. Through skills training and confidence building, the organisation encourages positive living for infected people, even down to simply taking pride in their physical appearance.

Mariama is one of five counsellors at Connaught Hospital in central Freetown who see between 20 and 25 clients a day, most of them medical referrals.

She recalled meeting a woman suffering from an AIDS-related illness during her first nursing job in 2003. The words, "HIV POSITIVE, BE CAREFUL" were written in bold on her notes. Mariama took on the case when she realised that nobody else was prepared to, only to be challenged by her colleagues for doing so.

"It was then I decided to go into HIV nursing," she said. "The most stressful side of the job is when somebody who is young and healthy turns out to be positive, or if there is a discordant couple [one positive and one negative], although we are trained to prepare everybody for either outcome, and not to assume anything when a client walks in the door."

But the general public remains unconvinced and mistrustful of the benefits of testing. Many suspect the reliability of the results or fear they will be made public.

Dr Brima Kargbo, director of the National AIDS Secretariat (NAS), emphasised that Sierra Leone's HIV/AIDS programme was still relatively new and learning from the experiences of other countries. He felt that people would only learn to trust the system if they actually went for an HIV test.

"We are trying to encourage more agencies to become involved in social marketing of HIV testing," he said. "And if we can secure further funding from the World Bank, we would like to see a model of door-to-door mobilisation, as accessibility to testing sites is still a major barrier in some districts."

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Source: http://www.plusnews.org/aidsreport.asp?reportid=6499

SAO TOME AND PRINCIPE: Stigma hobbles HIV/AIDS fight

2006-10-30T16:04:00.000+07:00

By, Integrated Regional Information Networks, October 30, 2006

SAO TOME, 25 October (PLUSNEWS) - When Maria (not her real name) took the brave step of speaking to the media in Sao Tome about her HIV-positive status, she had no idea what she was letting herself in for.

Although she had her back turned to the cameras, her voice was not disguised and it did not take long for people in her community to identify her. "After that, everyone knew it was me - at least, they thought it was me," she told PlusNews.

The stigma attached to being HIV positive in the tiny twin-island state of Sao Tome and Principe is huge. No one living with the virus has so far gone public about his or her status, and health workers say that discrimination presents the biggest challenge to curbing the spread of the epidemic.

"This is our biggest problem at the moment. If we don't start accepting that AIDS is a normal disease like others, we are going to make things even harder," said Dr Alzira do Rosario, coordinator of Sao Tome's national AIDS programme.

Do Rosario has to deliver antiretrovirals (ARVs) to some of her patients, who refuse to fetch them from the hospital for fear of being identified and marginalised.

"People who are infected don't want to show their face, not even to visit a doctor. But if they don't, they can get to the terminal phase of the illness, and by then it's too late. It also makes it harder to educate people and get people to change their behaviour," she said.

Television and radio spots about HIV/AIDS are broadcast daily in Sao Tome, where the rate of HIV infection is an estimated 1.5 percent, but the campaign has so far done little to change attitudes towards people living with the virus.

"The government should arrange an area for them [HIV-positive people], where they can live apart from the rest of society," said a 27-year-old man from Sao Tome, the capital. "If they are not going to be apart, their faces should be shown on television so that everyone else knows not to get involved with them. Lots of people who are HIV positive are contaminating others intentionally."

Others say people living with HIV should have their faces stamped so they can be easily identified, and should not be allowed to work.

Maria lost her job as a domestic worker when her boss heard rumours that she was HIV positive; she is struggling to bring up her two children, one of whom is also infected.

"Someone told my boss that I had AIDS, and that I could make him sick by infecting his razor or something," she said. "He went on holiday to Portugal and when he came back he told me he didn't need a maid anymore. He didn't say anything else or mention HIV."

Medicos do Mundo, a nongovernmental organisation providing medical relief in Sao Tome, offers free, anonymous testing and disseminates information about the disease. Its coordinator for the two islands, Manuela Castro, told PlusNews that anti-AIDS messages had been slow in getting through to the population of about 170,000.

"There is a lack of information and a lot of misinformation going around," she said. "People still believe that you can catch HIV by touching a person, being stung by a mosquito or using the same toilet as someone who is HIV positive."

There is no organisation to support people living with the disease. Do Rosario has tried repeatedly to bring her HIV-positive patients together but, with the exception of Maria, no one ever turns up.

Maria and the father of her child split up after she and her son tested positive for HIV. She told her mother about her test results, but they have not discussed it since. Today, her only support comes from a friend who lives on the other side of the island, whom she visits occasionally, and Do Rosario.

"I go to discos, I have a normal life, I have friends. I don't feel sad; I am very strong, very concentrated. But I do feel very lonely," Maria said. "When I feel down, I go and speak to my best friend. She lives very far away, but from time to time I go and talk to her to get it off my chest. She gives me strength."

Maria's HIV-positive son is almost ten and has been on ARVs for several years, but he does not go to school and suffers verbal abuse in the area where he lives - neighbours shout that he has AIDS and tell him to stay out of their yards.

Maria feels trapped by her situation and wants to leave Sao Tome for Angola, where she thinks life will be easier.

"I have family in Luanda. They don't know anything about me and I have heard that there, if you are HIV positive, there is no problem," she said. "Here, I'm never going to be able to do anything, I can't take a single step."

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Source: http://www.plusnews.org/AIDSreport.asp?ReportID=6491

Uganda: Let's Study Stigma No More

2006-10-23T16:29:00.000+07:00

INCREASING DISCRIMINATION against teachers infected with HIV, the virus that causes Aids, in Uganda is a reversal of victories registered against the disease.

A teacher discussing this development with The EastAfrican recently, summed up the gravity of the matter, "Sometimes teachers who die as a result of HIV/Aids do not get their terminal benefits. Can you tell me why?"

Elinah Kasubo, one of the few primary school teachers that have gone public about their HIV status in Uganda, suggests that the government should create a scheme for HIV/Aids affected teachers to assist the relatives they leave behind.

In an interview with The EastAfrican conducted in a quiet classroom, where she was preparing reports from the end of term at Naguru Katale Primary School in Kampala, Kasubo expresses displeasure at the time wasted when patients go to pick up antiretroviral (ARV) drugs from government hospitals.

She said, "It takes a whole day lining up for ARVs in government hospitals because there are many of us. When you miss out, you are asked to come back the following day. Headteachers in government schools may allow you to take time off to go for treatment, but that is not the case with private schools."

She says she has experienced the horrors of being stigmatised since she came to know that she had the virus in 2000.

"Stigma is something than can shorten the life of a person affected by HIV/Aids," she says.

Out of her own experience she advises, "Sometimes it helps you to deal with stigma when you interact with others with the same problem. But if you sit at home and start lamenting it, it eats you up. Through interaction you learn of others who have far bigger problems than yourself."

The 35-year-old trained teacher revealed that it was not easy for her to come to terms with the fact that she was a victim. "I couldn't cope, but eventually I had to accept it and learnt to live with it. I learnt that I had HIV/Aids after a test following an on-and-off fever. Counselling thereafter enabled me to live positively."

Kasubo, who has been on ARVs since 2005 and gets regular treatment at the Home Care Unit in Mengo Hospital, says it is difficult to persuade a man to go for a test.

A teacher since 1992, Kasubo says many teachers are reluctant to come out into the open about their HIV status because their immediate bosses may not understand.

The stigma caused by HIV/Aids escalates teacher absenteeism as they want to be away from school whenever they have no lessons. This is meant to reduce their contact time with fellow teachers and students, whom they perceive to be pointing fingers at them.

A 2005 survey titled, HIV/Aids and Teacher Absenteeism: Dynamics in the School Environment commissioned and funded by Action Aid International Uganda, says that while HIV positive teachers might be present at school, they often exhibit signs of constant worry.

Another form of stigmatisation related to teacher absenteeism is that because their job security is threatened by their condition, they have to strain to prove their ability to their bosses. "This is in a bid to save themselves from being retrenched or laid off," the report says.

Several focus group discussions with teachers and, in some cases, interviews with school administrators revealed that the manner in which managers handled absenteeism of HIV positive teachers was very stigmatising, says the report.

Teachers pointed out that harassment by school management kept teachers' morale low.

An unnamed male secondary school from Bushenyi District was quoted saying, "In one school I worked in, an HIV-positive teacher strained to work extra hard in order to impress the head teacher to avoid being laid off. One day he collapsed and died shortly after reaching hospital.

"In my school, teachers do not speak out, they don't disclose their status, they suffer silently for fear of victimisation," a female primary school teacher in Kampala said. "There have been at least three cases of teachers being laid off because of the headteacher found out, or may be suspected, that they were HIV-positive. This unfortunately happened even where the teachers were still strong enough to work."

"I know of at least three headteachers who recommended that their HIV positive teachers be transferred at a time they were bedridden, a Bushenyi district education officer revealed.

Among the numerous ways in which HIV/Aids has affected the education sector is through keeping a large number of teachers absent from work.

In some cases teachers through being differently affected or infected have been absent for more than two school terms, and yet have received little help to enable them to resume their duties. Coupled with this is the psychosocial effect that many teachers suffer from; while they may be physically present at school, and in classrooms, they are "spiritually absent."

"This has far reaching effects on the teachers, fellow teachers but perhaps most important, the learners who are the primary beneficiaries of the teacher's, service especially now as focus has been progressively shifting from quantity and physical access towards quality of education," the report observes.

Reacting to the Action Aid report the Assistant Commissioner for Personnel in the Ministry of Education, John Baptist Ssemakula, said, "The issue of stigma is something that has to be addressed over time because it is related to attitude change. It is not like switching a machine on and off. It requires enhanced and continuous sensitisation through clear and smooth provision of scientifically-proven information to demystify the conceptual minds of the public."

UGANDA NATIONAL TEACHERS Union secretary general Teopista Birungi said, "We are using this report to launch advocate campaigns to assist those teachers that have been infected and affected by HIV/Aids."

The Unesco Education Global Monitoring Report 2006 says that the HIV/Aids pandemic is the main cause of teacher shortages and absenteeism, especially in Africa.

"In the best-case scenario, Zambia, Tanzania and Kenya, would each have lost 600 teachers to HIV/Aids in 2005. In Mozambique, HIV/Aids-related teacher absenteeism is likely to have cost $3.3 million in 2005, plus $300,000 for additional teacher training," says the report.

A 2003 UN country team study suggested that further research should "highlight the indirect costs of the epidemic, such as those resulting from teachers being unable to teach, and human-hours being lost due to attending funerals, ensuring that employers make contingency plans to replace essential staff who are no longer able to function; and emphasise access to ARV drugs for treatment."

Women tend to have more access to medical support because there are organisations targeting them, says the report.

In terms of gender, the causes of absenteeism were found to be generally the same for both male and female teachers.

There were, however, remarkable differences that arise out of the culturally assigned male and female roles.

This had a bigger impact on female teachers in as far as HIV/Aids related causes of absenteeism were concerned, the Action Aid study says.

The study was conducted in the three districts of Bushenyi, Katakwi and Kampala, representing the Western, Eastern and Central regions. The respondents comprised both primary and post-primary male and female teachers, students and centre co-ordinating tutors. The report showed that teacher absenteeism was prevalent in both primary and post-primary educational institutions.

Source: The East African (Nairobi), Bamuturaki Musinguzi, October 17, 2006

http://allafrica.com/stories/200610170191.html

Personal Perspective: Stigma in Zambia

2006-10-19T10:31:00.000+07:00

In my country, we look at AIDS in a traditional way. We have unrealistic beliefs -- when you have HIV they think it may be the ghost.
But I was in a dilemma. I was sick on and off for a long time. My wife was pregnant and tested negative but I kept asking myself, "Why am I always getting sick?" When I went to the hospital they told me I had TB, but after being treated I wasn't getting much better. I was afraid to be tested for AIDS because I was told, "If you have HIV, you are going to die." Then I decided I was thinking too much about the illness and I wanted to know what was the problem.

As to the stigma, it was bad. The church did a very bad thing to me: after I told the church leaders about my situation, the preacher spoke from the pulpit saying, "Some of you were doing bad things and now you are sick." I felt stigmatized -- everyone was distant with me. When I was with them they didn't talk, but they talked to others about me. I would walk by and they were quiet but as soon as I passed they would start speaking quickly and in low voices. Only one of the elders was supportive.

Our Vice Bishop died. When I had confided in him, he told me I was lazy. Then he ended up in bed because of his illness and was stigmatized by the same pastor who spoke about me from the pulpit. He had trusted the Bishop, but now he was stigmatizing him. It is a cycle.

I think there is some justice because nine of the people who shamed me are now dead, and they died quickly. I have found that people who shame others tend to die quicker. You find out they are sick and then they are dead. But I am still alive.

Traditional healers have also brought a lot of calamity. When some people come for testing, they say they were told by the traditional healers, "I have the medicine and I can't get the HIV. I can help you, too." We must send the message that people shouldn't mix traditional medicine and HIV meds. We must start a project to educate the traditional healers and the people in the communities who listen to them.

Before there was fear, because there were no drugs. So when you went for testing and found out you were positive, you knew you were going to die. Now the idea that the drugs must be taken for life gives a lot of fear to people. That's why other people don't want to take it. They also see people who take it and then die. I had seen many people who were very sick who seemed like they were going to die, but then they took the drugs and they didn't die. So I thought if I took it, I wouldn't die. That was my focal point. I wanted to live. At first I had problems adjusting, but now I have a good appetite and everything is normal. Now I look good and feel great.

I am trying to get my own income-generating work because a lot of jobs expose you to things that aren't healthy if you have problems with your immune system. I could get sick if I did one of those jobs.

My wife is now positive. She kept on being tested and now she is positive. She and I usually chat between ourselves to keep our emotions safe. For us, having enough food is the most important thing to our HIV status. It helps us to stay healthy and it helps us to avoid opportunistic infections because we are stronger. My wife's CD4 count is still high so she is not taking meds. When I first tested positive my CD4 count was 120. After they put me on medication it went up to 350.

A lot of people have the problem that when they are feeling good, they stop taking the medicine. I won't do that. Food, medication, and income generation are the three most important things for me and for most positive people.

Support groups encourage people who aren't tested. To help more people get tested we can prevent stigma by going from door to door educating people. People must understand the problem. It is just an infection which can be treated with medication. Seeing positive people who have declared their status and are healthy and productive, will lessen stigma.

Source: Noel Mukuka, The body, Fall 2006

Noel Mukaka is a former bricklayer who resides in the Bauleni Compound of Lusaka, Zambia.

http://www.thebody.com/cria/fall06/zambia_stigma.html?m172h

In China, Negative Attitudes Toward HIV-Infected People Are Associated with Risky Sexual Behavior

2006-10-05T13:22:00.000+07:00

In China, migrants who hold stigmatizing beliefs about HIV-infected people have higher levels of sexual risk behaviors and lower levels of protective behaviors than other migrants.1 In a cross-sectional survey among sexually experienced young adults who had migrated from rural to urban areas, some 65% of respondents believed that HIV-infected people should be ostracized, forced out of their villages, distanced as friends, or deprived of educational or employment rights. Compared with other migrants, these migrants were more likely to have had an STI, multiple sex partners or commercial sex partners, and they were less likely to use condoms or to accept an HIV test.

In 2002, researchers gave anonymous, self-administered questionnaires to migrants aged 18–30 working in the cities of Beijing and Nanjing. Respondents rated their agreement with four statements pertaining to stigma against HIV-infected people: "HIV-infected people should be ostracized by their spouse and family members," "HIV-infected people should be forced to leave their villages," "I would not be able to maintain a normal relationship with my friends if they became infected with HIV" and "HIV-infected people should not have the same rights to education and employment as others." Respondents provided information about their migratory history; this information was converted to a mobility index (number of migratory cities divided by years of total migration), with a higher index indicating a higher level of mobility. They also answered questions testing their knowledge of HIV, with higher scores on a scale of 0–22 indicating greater knowledge, and questions about their risk and protective behaviors. Analyses were restricted to sexually experienced respondents.

Of the 2,153 migrants included in the study, slightly more than half were recruited from Nanjing. Their average age was about 25, and one-third were women. Nearly all were of Han ethnicity (97%) and had at least a middle school education (93%). Somewhat more than half (56%) were single. Half had been migrating for five or more years, and the majority (71%) had worked in at least two cities.

Overall, 65% of migrants agreed or strongly agreed with at least one of the four statements indicating stigma against people with HIV. More specifically, 24% agreed or strongly agreed with one statement, 21% with two, 12% with three and 8% with all four. Migrants who held stigmatizing beliefs had lower scores for HIV knowledge than those who did not hold any such beliefs (13.8 vs. 15.3).

In bivariate analyses, migrants with a high school education or a postsecondary school education had lower odds of holding any stigmatizing beliefs than did those with only a primary school education (odds ratios, 0.5 and 0.3, respectively). The odds were also reduced among migrants who had a monthly income greater than US$57 (0.6–0.7). In contrast, the odds of holding stigmatizing beliefs were higher among migrants who had a mobility index of 0.71–1.00 than among those who had an index of 0.06–0.30 (1.4). In addition, migrants who believed that it was highly likely that they would become infected with HIV had sharply higher odds than did those who believed that it was impossible (3.1).

The questions on sexual risk behaviors revealed that 7% of migrants had bought or sold sex in the past month, 10% had ever bought or sold sex and 13% had ever been told by a clinician that they had an STI. In terms of protective behaviors, 38% of migrants used condoms at least some of the time when they had sex, and 57% were willing to take an HIV test.

In an unadjusted model, compared with migrants who did not have any stigmatizing beliefs about HIV-infected people, those who did had elevated odds of having had an STI (odds ratio, 2.3), having had multiple sex partners in the past month (1.8) and having ever bought or sold sex (1.9). On the other hand, migrants who endorsed stigmatizing beliefs had lower odds of using condoms at least some of the time (0.6) and of being willing to take an HIV test (0.6).

The patterns were similar in a multiple logistic regression model that took the migrants' social, demographic and economic characteristics into account. Compared with migrants who did not hold any such beliefs, those who held 1–4 of them had roughly doubled odds of having had an STI (odds ratios, 1.7–2.0). Similarly, compared with migrants who held no stigmatizing beliefs, those who held 2–4 such beliefs were more likely to have ever had a commercial sex partner (1.7–2.0), and those who had 3–4 such beliefs were more likely to have had multiple sex partners in the past month (2.0). In contrast, migrants who held one or 3–4 stigmatizing beliefs had lower odds of using condoms than did those who held none (0.7 for each). Migrants who endorsed two or 3–4 of the beliefs were less likely to be willing to take an HIV test than those who endorsed none (0.5–0.6).

The observed association between stigmatizing beliefs and risky behaviors among Chinese migrants, the researchers assert, may reflect an attempt to reconcile the conflict they experience when they engage in behaviors that they know are unsafe and socially unacceptable. For example, the researchers write, individuals may seek to justify their risky behavior by blaming people with HIV while assuming that they themselves are not at risk, or they may endorse mainstream beliefs in an effort to blend in with others who do not engage in risky behaviors. The finding that a person's stigmatizing belief "is a potential barrier to HIV-related preventive practices highlights the difficulties and challenges in implementing behavioral interventions," the researchers conclude.—S. London

REFERENCE
1. Liu H et al., Relation of sexual risks and prevention practices with individuals' stigmatising beliefs towards HIV infected individuals: an exploratory study, Sexually Transmitted Infections, 2005, 81(6):511–516.

Source: S. London, International Family Planning Perspectives
Volume 32, Number 2, 2006

http://www.guttmacher.org/pubs/journals/3210406.html

Love versus stigma

2006-09-27T08:56:00.000+07:00

HDN Key Correspondent Team, September 2006

Namibia: "I need love," says Emma Tjirimuje, an HIV positive mother living in Katutura, a vast, poor, black suburb in Windhoek, Namibia.

Emma is struggling to live positively with HIV, working as a volunteer counsellor for Lironga Eparu, the organisation of HIV positive people in Namibia. Emma's biggest wish is to have a ‘love centre’ for HIV positive people.

The majority of inhabitants in Katutura live under the poverty line, just part of the 75 per cent of the population who live in poverty. It is also the most densely populated part of the capital. This legacy of the colonial political system of apartheid is a sprawling township made up of a mixture of modern standard bungalows and box shaped cabins that give way to tiny tin shacks of impoverished rural immigrants living on the outskirts of the former 'blacks only' township.

"People need to know that HIV infected people need love. I wish I could open a love centre for them… the HIV virus is nothing when you have your family's support, but when you can not even walk to the cuca shop (neighborhood shop) without people whispering loudly behind you and others calling out, your soul is slowly dying, and the rest of you will follow.

It is painful, really, I wish I could find some money to build my own house and get away from the rest of my family," Emma says.

Emma says she is managing with the disease, but she is failing to manage her family's reactions to her condition. She is a widow whose husband died of HIV/AIDS and now she has no means of survival except to live with her mother, siblings, her children, and their cousins under one roof.

"I know I would be happy if I could find a way in which I could leave my family to go and live in a house far away from Windhoek with my three children, away from the stigma, the hurtful comments. Imagine, if I sit in the toilet for more than ten minutes when I have a running stomach, someone will come and knock, even a child and they shout - 'Hey, Mrs HIV positive! What are you still doing in there?' I can no longer kiss my nieces, their mothers, my sisters, complain bitterly. I cannot use the same cups as everyone else, I can only share with my children. My youngest child understands, but nobody else really does…"

Many positive people around the country echo Emma's lament. Doctors and nurses testify that often they have to deal with the psychological rather than the physical effects of the HIV virus.

"People are dying because they have no one to discuss their situation with them… No one in whom to confide. They pine away, eventually becoming so depressed that they decide to stop taking their medicines and then HIV/AIDS quickly sets in," said Tamia Kudzai, a doctor working at a state hospital. "It is clear that those who have support from their parents or other relatives fare much better than the ones who cannot tell anyone of their condition."

The United Nations Development Assistance Framework for Namibia (UNDAF) has identified stigma as one of their priority points in the fight against HIV/AIDS from 2006 to 2010. UNAIDS Namibia Country Coordinator, Salvatore Niyonzima, says one of the main requirements of UNDAF is to strengthen the response to the HIV/AIDS epidemic.

According to a December 2005 UNDAF report, significant proportions of Namibians, particularly rural women and isolated groups, do not have complete and accurate information on HIV/AIDS prevention or treatment strategies.

"Many Namibians do not want to get tested for HIV due to stigma and discrimination. The roll out of ARV treatment and PMTCT+ [prevention of mother to child transmission] should begin to mitigate the stigma, but access is still limited and understanding of treatment, low.

Strong interventions must be implemented at all levels to counter the vicious cycle of stigma, discrimination, fear, lack of human rights of women and alcohol abuse," says the report.

Chilombo Mwondela-Katukula
HDN Key Correspondent, Namibia
Email: correspondents@hdnet.org
Web: www.healthdev.org/kc
HDN 2006

Nothing to be ashamed of

2006-09-12T10:44:00.000+07:00

ALTHOUGH MOST DISCUSSIONS AROUND HIV FOCUS ON SUB-SAHARAN AFRICA, MANY PEOPLE IN ASIA ARE NOW POSITIVE. BUT SILENCE, PLUS LACK OF EDUCATION AND TREATMENT, MEAN THAT MANY LIVE WITH DISCRIMINATION AND STIGMA TOO

One day Sabitha Mallick was a respectable mother of two children, a wife and an agricutural labourer living in a village in Orissa, one of India's poorest states hugging the Bay of Bengal. The next, her family became pariahs: banished from her in-laws' home, shunned by her neighbours and banned from using the village well and footpaths she had trodden all her life.

What changed the villagers' perception of Sabitha and her husband was the news that the couple had HIV. Her husband, a migrant labour who lived in Mumbai to work as a whitewash painter, had become gravely ill and returned to Orissa where he was tested for the virus.

While she nursed her husband until the time of his death in the small hut they'd been forced to live in by her in-laws, Sabitha faced insults and cruelty from her community. "My in-laws told me to go away from the village. I said, 'Where will I go?' When I went to the tube well, the villagers stopped me using it by blocking it. They said, 'If you wash your clothes here you'll pass on the infection.'"

Her children, who are not positive, would come home from school crying because their classmates refused to play with them. "The harassment made me want to kill myself," Sabitha says.

NGOs say Orissa is an extreme example of the kind of humiliation and mistreatment experienced by people living with HIV in India. Recently there have been cases of positive people thrown out of government hospitals, evicted from their homes by landlords, children of infected parents taunted in classrooms, water from wells denied to HIV positive people, and families rejecting their positive relatives.

Fuelling the discrimination in Orissa, say NGOs, is a lack of training for health workers on HIV care, awareness-raising projects and no access to anti-retroviral drugs for infected people.

In addition, the state is among India's most culturally conservative, with myths prevailing about how the virus is transmitted and cured. "Doctors are giving positive people wrong information; herbal doctors are selling them tablets claiming it'll cure them," says Stanley Joseph, capacity building officer for the Indian Network for People Living with HIV/Aids (INP+), a rights organisation formed by and for positive people, supported by Concern Worldwide. "There are common beliefs that having sex with a virgin or drinking donkey's milk will get rid of HIV."

Although Orissa has been deemed a "low prevalence" state by the Indian government, agencies focused on HIV care and support say that six districts within Orissa now have high prevalence rates of HIV/Aids. Agencies believe that the actual number of HIV infections is up to 10 times higher than the official figure of 2,500.

Driving up infection rates are Orissa's high incidences of poverty, displacement and industrialisation. Moreover, experts say, the fact that the state is prone to floods and drought has concentrated the government on emergency relief at the expense of HIV/Aids prevention and intervention.

High prevalence districts in Orissa include those in which there are families of migrant workers who travel to areas such as Mumbai where there are high infection rates. Other high prevalence districts contain transit points with a large number of truckers using sex workers and tribal areas where there are fewer restrictions on sex outside marriage.

"Orissa is lagging behind other states because it is completely without state leadership on HIV," says Matthew Pickard, country director of Concern Worldwide India. "It's not something that's being given consideration in the mainstream."

Pickard warns that Orissa's lack of HIV/Aids care and intervention is putting more people at risk of infection. "We've seen what has happened in Africa when people were silent. All those risk factors are in India and there isn't enough being done."

India is already home to the largest population living with HIV. Some 5.7 million Indians have the virus, overtaking South Africa, which has 5.5 million, this year. It is mainly passed through heterosexual sex, except in the north-eastern states where injecting drug use is the commonest mode of transmission.

Although India has a low HIV-prevalence rate, a UN development programme report released in July argued that in a highly populated country such as India, the label "tends to undermine the gravity of the epidemic". It predicts that if the spread of the virus is unchecked, more than 16 million people will be infected by 2016.

Tracking the epidemic in India poses a serious challenge as women and children are increasingly infected. Gender prejudice, leading to men assuming the decision-making role and women's difficulty in negotiating safer sex, is a major obstacle to prevention, according to the latest report by the UN General Assembly Special Session on HIV/Aids in India.

However, stigma and discrimination is also one of the biggest barriers to preventing further infections; it discourages people from being tested and to access care, support and treatment in order to lead production lives.

Widows who are HIV positive in India face more stigma and discrimination from the family and community then men, the UNDP report found. Over 90% of widows stop living in their marital homes and many are left destitute.

Sabitha Mallick was one of them. Her suicidal feelings and failing health prompted a doctor to refer her to Utkal Sevak Samaj (USS), an NGO based in Cuttack, a city near to the state capital Bubaneswar. For six months, Sabitha received support from a peer counsellor, a fellow widow who was HIV positive. "I talked about my feelings of despair, my fears about how I would feed my children, how I would educate them, and all the harassment I'd had."

The counselling enabled Sabitha to cope and encouraged her to develop a plan to be financially independent. She is one of half a dozen HIV positive widows the organisation is currently training to be tailors. USS also took a medical team to Sabitha's village to raise awareness among her neighbours about how the virus is transmitted.

The intervention will enable Sabitha to return to her village once her training is finished and support herself and her children financially. But the absence of anti-retrovirals and medical care in Orissa persists, and looms large over her future. "My husband was so unwell at the end of his life. I took care of him. But who will take care of me?"

FIGHTING STIGMA: CAMBODIA

Ms Sreymom, 43, a widow with five children, lives in Bakan district, in the Pursat province of Cambodia. She was infected with HIV by her husband who died in 2000.

"HIV/Aids destroyed almost everything about my life," she says. "I lost my beloved husband, who was the only wage earner in the family. I had to sell the house, the farming land, and pawn the land for my house to pay for my husband's treatment. I only had one bed left and I begged my neighbour to allow us to shelter under a tree on their land."

She experienced discrimination and a total lack of understanding. "All the villagers were afraid of us. Even when my children tried to sell them a few sarongs I had left, they would not buy them because they were afraid of getting HIV/Aids."

In Bakan district, the villagers have to contend with the stresses and strains of poverty: income from agricultural production is very low due to poor technological facilities and skills, small landholdings, and an over-supply of labour. In each village at least 10% to 20% of the population migrate and seek employment. Poverty, migration and social inequality are the main factors driving the spread of the virus.

However, a local NGO, Ponluer Komar (PK), supported by Concern Worldwide, has set up a livelihoods project to help people living with HIV/Aids. Sreymom has become involved and is now a member of a PK-supported chicken-raising group. Money she earns from selling her chickens pays for her transport to receive regular treatment for "opportunistic infections" at the district referral hospital and helps to send her children to school. She is supported in home gardening activities, growing potatoes and vegetables on a small piece of land around her house. These are the main sources of food for her family. Recently PK has agreed to help her construct a well which will provide a water source for vegetable growing.

While Sreymom is benefiting from PK's activities, she is helping the project as well. She has now taken on the role of "village focal person", responsible for promoting HIV/Aids awareness throughout the village by sharing her personal experience through house visits. She is also working in nearby villages as well. Currently, there is another HIV/Aids-affected family in her village and she is helping them through counselling and referring them for services. She has combined her own experience with training from PK to carry out her responsibilities.

"I was sick in bed when I first met PK," she says. "Now, I have hope for my life and my family. I realise that I am important not only for my children but for my community".

FIGHTING STIGMA: INDIA

When Vivian George, 31, tested positive for HIV in 2003, he weighed just 33kgs and cared only for his next fix. A heroin user for several years, he had heard that sharing needles was a risk but the friends he injected with insisted that they share.

A local policeman came to know he was positive and told everyone living in his neighbourhood in Bubaneswar, the state capital of Orissa. Tea shops refused to serve Vivian unless he brought his own cup; a roadside food stall would no longer give him breakfast unless he brought his own plate; people he once considered to be friends kept a distance. "I became very depressed," Vivian says. "I wrote a suicide note three times and tied a rope around my neck. But I always passed out with drugs before I could act upon it."

Needing a blood transfusion, Vivian was admitted to the state capital hospital. He mustered the courage to quietly whisper into a doctor's ear that he was positive and wanted to be referred for care and treatment. The doctor suddenly took two steps back from his bed, walked away and sent a nurse over to tell Vivian he had to leave the hospital immediately. "I told them I'd have to wait for my sister to collect me. I couldn't stand, let alone walk," he says. But within minutes two ward boys picked him up and threw him on to the front steps of the hospital.

His sister contacted members of Mother Teresa's Mission of Charity who organised for Vivian to have a bed in its hospital in Calcutta - an eight-hour train journey away. He stayed in the mission hospital for 18 months.

He returned to Bubaneswar last October and since January this year, has been trained and begun paid work as a peer counsellor for the Indian Network for People Living with HIV/Aids (INP+). When someone tests positive in his district, he goes to the centre to counsel and support them. "I tell them about my past and my present. I tell them not to worry, that there's many people like us; there's treatment, and even without medicine you can live if you look after yourself."

As ART is not available in Orissa, Vivian also accompanies people on their journey to Calcutta to get it. "I've earned their respect," he says. "That gives me great satisfaction."

Source: Raekha Prasad http://www.guardian.co.uk/concernworldwide/story/0,,1841221,00.html

Nigeria: New Study Reveals Discrimination by Health Professionals Against People Living with HIV/AIDS is Fueled by Fear of Infection, Lack of Protecti

2006-08-30T15:31:00.000+07:00

(Toronto) While the majority of Nigerian health care professionals comply with ethical obligations and do not deny care or treatment to People Living With AIDS (PLWA), a disturbing number of health care professionals engage in discriminatory behavior toward treatment and care of PLWA, according to a new study released today by Physicians for Human Rights (PHR). Health care professionals also reported engaging in practices that are against international and Nigerian codes of professional ethics including testing without consent and disclosure of confidential medical information without permission.

"The health sector is not immune to the kind of virulent discrimination that has hurt people with HIV/AIDS for many years. It is a very serious impediment to adequate AIDS treatment and affects the willingness of people with HIV to come forward," said Leonard Rubenstein, JD, PHR's Executive Director. "The study suggests that for some health providers at least, the lack of knowledge and lack of protective gear contributes to discrimination. Their fear affects their treatment of patients," said Rubenstein. "The situation underscores the need for a plan to build African health systems so that medical workers have information, gloves and other supplies to protect themselves while caring for patients."

The PHR report, Nigeria: Access to Health Care for People Living With AIDS, contains data from two surveys. The first is a survey of a representative sample of 1,021 health professionals in four sites in Nigeria, and the second, a convenience sample of people living with HIV/AIDS in those four states and in Lagos and Abuja. These findings were supplemented by a survey of directors within the facilities where the health professional surveys were conducted and individual interviews with key informants including national and state policymakers, NGO representatives, and officers of international agencies.

Ten percent of respondents themselves reported refusing to care for or admit people living with AIDS to a hospital. Sixty-six percent of respondents reported observing their colleagues' refusal to care for HIV/AIDS patients and 43% observed their colleagues' refusal to admit people living with AIDS to a hospital. Forty-eight percent of professionals expressed their belief that a person with HIV/AIDS cannot be treated effectively in their facility. Twelve percent of professionals said that treatment of opportunistic infections in HIV/AIDS patients wastes resources. Seven percent agreed that treating someone with HIV/AIDS is a waste of precious resources.
Among health care professionals, the three most important concerns about treating HIV/AIDS patients were fear of becoming infected (a full 81% of respondents expressed this), contamination of facility, materials and instruments (17%), and not having materials needed to treat (10%) the disease.

The study, which also included a survey of 227 people living with HIV/AIDS (PLWA), concludes that discrimination undermines efforts to provide effectiv e prevention, diagnosis and treatment programs.

"Discrimination can threaten the survival of people with HIV/AIDS by denying them medical care. It robs them of the fundamental respect for their dignity and their right to health," commented Rubenstein.

Seventy-two percent of health care professionals surveyed said they practice universal precautions in all cases. Of those who did not do so in all cases, 65% indicated that this was due to lack of materials. One policymaker quoted in the study stated, "Most hospitals don't have protective supplies. There is no incentive for health care professionals to risk infection."
A majority of health care providers surveyed have not received sufficient training on HIV and AIDS prevention and treatment and have limited access to current information about HIV and AIDS.

A large majority of professionals voiced support for protection of the rights of women and people with HIV/AIDS. Yet over half of the professionals reported that they obtained informed consent of patients for 50% or less of HIV tests they ordered, including 14% who indicated that they never obtained informed consent for HIV tests. Seventy-five percent of health care professionals agreed that there are circumstances where it is appropriate to test a patient for HIV without his or her knowledge or consent.

Most respondents to the PLWA survey reported being informed of their HIV status in the past three years. Approximately half of them (49%) stated that they did not know they were being tested for HIV. Eighteen percent of PLWA reported that it was their idea to be tested while 45% stated that the test was the idea of the health worker. About a quarter (24%) of respondents to the PLWA survey indicated that their current sexual partners were not aware of their HIV status. Five percent stated that their doctor revealed their HIV status to someone without their permission. Four percent said a nurse revealed their status without their permission and 3% reported that a laboratory technician did this. Seven percent reported being shunned by their family and 7% by their community.

The health care professional study was conducted in four Nigerian states: Abia, Gombe, Kano and Oyo. Survey respondents from each state, who were proportionally sampled, included doctors, nurses and midwives. Similarly, the people living with AIDS were interviewed in the four states and in Abuja and Lagos. This study represents the attitudes and experiences of nearly 4,500 health care professionals in the four states who serve a combined population of approximately 17.8 million people.

"Stigma associated with HIV/AIDS and the discriminatory behavior practiced by health providers has had an enormous impact on those people living with AIDS. Such practices are corrosive to the health sector in general, eroding trust in health practitioners and dissuading people infected with HIV/AIDS from seeking care and ultimately contributing to the spread of AIDS," said Rubenstein. An estimated 3.5 million Nigerians are living with HIV/AIDS.
Discrimination that occurs within the health sector may have devastating social and personal consequences and legitimize other forms of discrimination toward PLWA such as in the work place and by families and communities. PLWA may be evicted from their homes, be denied inheritance rights, lose their jobs or be passed over for promotion, or shunned by their families and communities. Anti-discrimination policies must be instituted and enforced by the government of Nigeria usch that those experiencing such behavior can seek redress, PHR said.
Respondents from both surveys - health professionals and people living with AIDS -- identified a lack of financial resources as being the greatest barrier that HIV positive people face when trying to access health care.

Recommendations

President Olusegun Obasanjo's signature of the Government's new HIV/AIDS policy and stated government commitment to pass legislation protecting PLWA from discrimination are promising steps. In moving forward to implement the new National HIV/AIDS Policy, the relevant stakeholders should include the following steps:

Government of Nigeria:

Provide sufficient supplies of protective materials for practice of universal precautions including the provision of gloves and disposable syringes to all health facilities under Federal Ministry of Health control.
Provide sufficient supplies of drugs including antiretrovirals (ARVs) (for post-exposure prophylaxis and treatment), antibiotics and other drugs needed for treatment and prevention of HIV/AIDS and related conditions to all health facilities; make these drugs available to patients at a reasonable cost.
Develop and implement programs to educate health care professionals and all staff in health facilities about HIV/AIDS including modes of transmission and universal precautions, ethics, and treatment and care. Involve PLWA in preparation of these programs.
Engage in a thorough review of laws and the constitution and enact reform to ensure legal protection of PLWA in all sectors.

Nigeria Health Professional Associations:

Uphold standards of medical practice that are consistent with Nigerian codes of medical ethics. Engage in continuing education of physicians, nurses and midwives on HIV/AIDS and on matters of professional ethics.

People Living with AIDS (PLWA):

Work with the Nigerian Federal and State Ministries of Health, Local Government Authorities and health care professionals to develop, promulgate and enforce HIV/AIDS testing and treatment policies within health institutions that conform to the Nigerian code medical ethics and that guarantee non-discrimination against PLWA.

Nigeria Health Professional Associations:

Uphold standards of medical practice that are consistent with Nigerian codes of medical ethics. Engage in continuing education of physicians, nurses and midwives on HIV/AIDS and on matters of professional ethics.

International Donors:

Provide material and technical assistance, in particular to professional associations for efforts to educate health professionals and the public about HIV/AIDS and ethics of the medical profession.
Provide material and logistical support to ensure that all health facilities have sufficient and consistent supplies of materials for HIV/AIDS treatment and prevention, including for implementation of universal precautions.
Support the Global Fund to Fight AIDS, Tuberculosis and Malaria.

For 20 years, Physicians for Human Rights (PHR), based in Cambridge, MA, advances health and dignity by protecting human rights. Health Action AIDS, a project of PHR, mobilizes health professionals to support a comprehensive AIDS strategy and advocates for funds to combat the disease. It develops ways for US health professionals to support colleagues and activists around the world and researches the connection between human rights and HIV/AIDS. As a founding member of the International Campaign to Ban Landmines, PHR shared the 1997 Nobel Peace Prize.

Source://http://www.phrusa.org/campaigns/aids/news_2006-08-17.html

Stigma stops HIV disclosure

2006-08-30T15:17:00.000+07:00

A group of researchers from South Africa's Human Sciences Research Council is part of an ambitious, international study to develop or adapt theory-based behavioural risk reduction interventions to reduce the risk of HIV transmission by people living with HIV and Aids who know their status.

"Sub-Saharan Africa is home to an estimated 25 – 28 million people living with HIV/Aids (PLWHA),” said Dr Leickness Simbayi, project director and coordinator for four of the eight African countries covered by the study. “But most behavioural studies have focussed on the general population and research into interventions to reduce risk behaviour, have been neglected. This study is one of the first to focus on the PLWHA themselves.”

The results of the first phase of the study was presented at a satellite session of the XVI International Aids Conference in Toronto, hosted by the Social Aspects of HIV/Aids Research Alliance (SAHARA). The session, which was held on August 17, looked at ways of managing the complexity of the HIV/Aids challenge in sub-Saharan Africa. The study is being undertaken by researchers from Botswana, Lesotho, South Africa, Swaziland, Kenya, Rwanda, Burkina Faso, and Senegal.

“We know that a substantial (but unknown) number of stable sexual relationships are between partners where one is HIV positive, but does not tell the other partner,” Dr Simbayi said. “Stigma is a very real part of these people's lives. Disclosing one's HIV status can be risky.”
“For example, our study in South Africa showed that 40% of people living with HIV/Aids had experienced discrimination and one in five had lost their homes or their jobs because of their HIV status.”

“Add into the mix the fact that many PLWHA consider their HIV status as secondary to the other problems they face in their daily lives - such as poverty, unemployment and gender-based violence – and you begin to understand why some people are not disclosing their HIV status,” he said.

The study also highlighted the need for HIV prevention interventions for people who have tested HIV positive.

Non-disclosure

Anonymous surveys were completed by 413 HIV positive men and 641 HIV positive women, most of whom (73%) were younger than 35 years old, African (70%), unemployed (70%), and unmarried (75%), whilst nearly half (49%) had been hospitalized for HIV-related conditions (49%) and exactly half (50%) were taking antiretrovirals (ARVs). Among the 903 (85%) participants who were currently sexually active, 378 (42%) indicated that they had sex with a person that they had not disclosed their HIV status to in the previous three months. Participants who had not disclosed to all of their sex partners were significantly more likely to have multiple sex partners, HIV negative partners, partners of unknown HIV status, and unprotected intercourse with non-concordant sex partners.

Having not disclosed HIV status to partners was also independently associated with having lost a job or a place to stay because of being HIV positive and feeling less able to disclose to partners.
The gay community was even more marginalised, with 45% of the HIV positive gay men interviewed reporting that they had lost their homes or their jobs because of their HIV status. Internalised stigma was found to be most prevalent among this group, with 58% hiding their HIV status from others and over 45% feeling guilt or a sense of shame because of their HIV status.

Interventions neededDr Simbayi's team concluded that interventions are needed in South Africa to reduce Aids stigma and discrimination and to assist PLWHA to make effective decisions whether to disclose their HIV status and to practice safer sex regardless of disclosure decisions.
There is also an urgent need for social reform and interventions to reduce Aids-related stigma and discrimination at societal level.

It is critical that interventions also address some of the concomitant social conditions co-existing with Aids such as gender discrimination, homophobia, racism, xenophobia, unemployment, hunger and poverty.

Two interventions have been selected as possible candidates for adaptation in sub-Saharan Africa. These are Healthy Relationships (which is based on social support groups and was developed by Professor Seth C. Kalichman and associates of the Centre for Health, Intervention and Prevention (CHIP) in the Department of Psychology, University of Connecticut), and the clinically-based Options for Health (developed by Professor Jeffrey Fisher and associates from the same centre).

In Phases 2 and 3 of this study which are about to commence, these interventions will be adapted and their effectiveness tested.

Source: http://www.health24.com/news/HIV_AIDS/1-920,37099.asp

Frontline: Realities of stigma in health care settings

2006-08-28T13:13:00.000+07:00

by HDN Key Correspondent, Uganda
August 2006

While the majority of health care professionals comply with ethical guidelines and do not deny care or treatment to people living with HIV (PLHIV), a disturbing number of health care professionals engage in stigmatising and discriminatory behaviour, according to studies presented at the recent XVI International AIDS Conference in Toronto.

Health care workers are also reported to engage in practices that contravene codes of professional ethics, including HIV testing without consent and disclosure of confidential medical information without prior permission. This was revealed by Takawira Moses, who works with Medicin Sans Frontiers (MSF) in rural Zambia.

It is clear that the health sector is not immune to HIV-related stigma or discrimination, which is reported to be ‘rampant’ in many communities where HIV is still seen as taboo. This is a serious impediment for many PLHIVs coming forward to receive much needed treatment, care and support services, and to disclosing their status and fully facing the virus.

According to research findings presented by JS Oruko, conducted in four districts hospitals and eight rural health units in Kenya, the lack of adequate knowledge and lack of universal precautions to protect health workers, such as gloves, adequate sharps disposal and post-exposure prophylaxis, contributes to the formation of stigmatising attitudes among health workers, who themselves fear infection.

“The fear they face affects the kind of treatment given to the PLHIV”, said Oruko.

This underscores the need for a comprehensive plan to develop the health systems of resource limited counties so that health workers have enough knowledge and basic equipment to protect themselves while caring for their patients.

The uneven distribution of knowledge, care competence and basic resources between urban and rural settings also means that stigmatising attitudes tend to be highest in rural health care. This surely suggests that poverty is also one of the underlying factors in creating HIV-related stigma.

According to Dr Katende from Uganda, who has provided technical expertise in developing tools to measure stigma, a considerable number of health workers admit to having refused to care for or admit people with HIV. There are cases where health workers express sentiments like: “Treatment of opportunistic infections in PLHIV is wastage of valuable resources.”

It is appalling that among the health workers, the three most important concerns about treating HIV-positive patients are fear of becoming infected, contamination of the health facility and lack of availability of materials and instruments needed for treatment, as is revealed through a report from Nigeria by Physicians for Human Rights.

One way to reassure health workers working with PLHIVs is provision of post-exposure prophylaxis (PEP) to treat possible cases of nosocomial infection through, for example, needlestick injuries. To some health workers PEP is still a mystery, particularly those working in rural settings. But where PEP is available it provides health care workers with the reassurance that in case of accidental exposure – which is very rare – something can nevertheless be done.

If we are to reduce and eventually eradicate HIV-related stigma and discrimination in health care settings, we must look very honestly at the realities that health workers face. Their fears are in some ways justified. Provision of support and information is essential to fight the fear that breeds stigma.

HDN Key Correspondent, Uganda
Email: correspondents@hdnet.org
Website: www.healthdev.org/kc

(First distributed: August 2006)

Spotlight: Reducing stigma and discrimination: Successful examples from the health care sector in Asia

2006-08-28T13:09:00.000+07:00

By HDN Key Correspondent, August 2006

There is no shortage of studies demonstrating that stigma and discrimination is common in health care settings in Asia. Ask anyone living with HIV where they experience the most discrimination based on their serostatus, their occupation as a sex worker, or their injecting drug use: They will often reply that health workers are the ones that make them feel the worst. Stories of segregation in wards, refusal of care, and disclosure of status are common in the region.

What really works to reduce stigma and discrimination? There is in fact a very small evidence base for what has been proven to work. During the session: ‘Stigma and discrimination: The undoing of universal access’ [at the International AIDS Conference, Toronto] we heard that there is no longer any reason for inaction. The tools to measure stigma and discrimination are available and ready to be adapted to local situations.

One of the most successful illustrations of action has taken place in India. The capital Delhi is in a relatively low HIV prevalence area but is in a good position to try out methods that may be applicable to other parts of the country where there are more people living with HIV (PLHIV).

The Population Council undertook formative research to measure the level of stigma and discrimination in three public sector and one private hospital. They then worked with a local nongovernmental organisation and PLHIVs to undertake a series of activities with all levels of health workers to successfully reduce stigma and the resulting discrimination.

The hospitals developed a set of guidelines that they could apply as ‘gold standards’ of non-discriminatory care and support for PLHIV. They created a checklist that could be used to see if they improved the quality of the care they delivered and they developed pride as they discovered that they could disseminate their ‘PLHIV-Friendly Achievement Checklist’ for others to assess their work.

The methods then used in Delhi were simple. Training was provided for all health workers in the hospitals, not just the doctors. Infection control was improved. And voluntary counselling and testing services were enhanced. Stigma and discrimination reportedly decreased in all four hospitals. The only weakness of this approach was that self observation was used to determine whether anything changed. Patients and PLHIV were not asked directly whether the behaviour of hospital staff had changed. But that is no detractor of the success – just a suggestion to improve it.

The brilliant example of Delhi has not yet been taken up by other health care institutions in India. But nothing is stopping UNICEF from promoting the use of these guidelines in the hospital based prevention-of-mother-to-child-transmission (PMTCT) programmes they are promoting in India and Myanmar. In addition, the World Bank, in a new publication released at the conference – ‘AIDS in South Asia: Understanding and Responding to a Heterogeneous Epidemic”, has recommended that all countries in South Asia develop programmes to reduce stigma.

These tools are also being tested in several sites in Vietnam. With two successful examples in both South Asia and East Asia, there are no reasons that the activities cannot be replicated to reach the majority of health care institutions in the most populous continent. They are inexpensive to implement and it is simple to set targets for their use. By the end of this year many Asian countries will have national universal access plans. How many of them will include achievable targets for reduction of stigma and discrimination?

HDN Key Correspondent, Thailand
Email: correspondents@hdnet.org
Website: www.healthdev.org/kc

Links:

For Population Council PLHIV-Friendly Achievement Checklist:
http://www.popcouncil.org/horizons/pfechklst.html).

For new World Bank publication:
http://siteresources.worldbank.org/SOUTHASIAEXT/Resources/Publications/448813-1155152122224/southasia_aids.pdf

(first distributed: August 2006)

Burmese male sex workers in Thailand face stigma and AIDS risks

2006-08-14T16:27:00.000+07:00

Chai Sor, 29, is a male sex worker in one of Chiang Mai's many gay bars. He earns between 7,000 and 20,000 baht a month, depending on how many clients he gets.

Chai Sor is one of many Burmese who make up a significant number of male sex workers in Thailand.

There are no statistics on the exact number of Burmese migrants in the industry but Phongthorn Chanlearn, a project manager with Mplus+, said about 80 percent of gay-bar workers were from Burma's Shan, Kachin and Karen states.

Mplus+ runs sexual-health clinics for male sex workers in Thailand and aims to reduce the stigma surrounding the industry. Phongthorn said many men were forced into the industry due to their lack of legal status and work rights. "A lack of nationality and no identity cards pushes them automatic to engage in several gay bars and become male sex workers," Phongthorn said.

According to Phongthorn, some clients paid male prostitutes big money for unprotected sex, making it easier for them to contract sexually transmitted infections (STIs) including HIV/AIDS.

But Chai Sor said he refused clients who asked for sex without a condom and had a medical checkup every three months at the MSM clinic run by Mplus+.

"I am always aware of how to have safe sex."

Tin, 23, also a sex worker, said he used condoms when with his clients.

". . . I understand to have safe sex with any clients."

But Phongthorn said many male sex workers, some under the age of 18, were already infected with HIV/AIDS or STIs.

She said bar owners were scared to employ men under 18 and many were forced to work independently, searching for clients around Chiang Mai's night bazaar and Tha Phae gate late at night. While Thai HIV/AIDS prevention and education programs have met with considerable success, NGO workers said there were still many young men at risk of infection. Dr Kreang Sak of the Chiang Mai-provincial public Health Office, who works part time at the Mplus+ MSM clinic, said young male sex workers in Thailand faced a high risk of contracting STIs.

"There is another high risk groups including male sex workers and drugs addicts youngsters in Thailand," said Dr Kreang Sak. "Due to the high frequency of sex every day more than other normal people, they become high risk groups for HIV/AIDS," he said. According to a report by the Center Disease Control in Bangkok, many adolescents in Thailand have Gonorrhea and Chlamydia. "The country can face as the same situation of HIV/AIDS epidemic crisis as previous last 10-years, if there is less attention to such high risk groups," Dr Kreang Sak said. "Because of the social stigma on male sex workers by the society, it is still difficult to get in touch (through) Campaigners in our society," he said.

Dr Kreang Sak said there was a need for more clinics like the MSM clinic. Mplus+ has only two clinics – one in Chiang Mai and one in Phuket – and there is only one government-run clinic in Bangkok targeting male sex workers. Chiang Mai's MSM clinic was set up at the end of 2004 and treats an average of 10 patients a day. But Dr Kreang Sak said it was impossible for staff at the clinic to record data on the nationalities and ages of their patients as it was their policy not to ask patients for identification. "Every thing is free of charge and we avoid the social stigma by checking their nationalities," he said adding staff suspected many patients lied about their ages and were actually under 18.

He also said while more programs were needed to target young male sex workers, it was up to them to take responsibility for their health. "Every male sex workers has full responsibility and need to aware of their safer sex and so that they can stay away from infected of HIV/AIDS and STIs."

Source: UNDP, August 14, 2006

HIV Is Treatable, It's the Stigma That's Fatal

2006-08-14T16:15:00.000+07:00

The murder in June of Vivian Kavuma in Uganda by her lover after she disclosed that she was infected with HIV.

The brutal stabbing with a pitchfork of 15-year-old Isaiah Gakuyo last April in Kenya by his uncle simply because the orphan was HIV-positive. There were numerous witnesses to the attack, but none intervened.

The murder of in June 2005 human rights activist Octavio Acuña Rubio in a condom shop he owned in Mexico.

The arrests in December of five Zimbabwean AIDS activists commemorating World AIDS Day at a public square in Harare.

The house arrests in March this year of at least 23 people living with HIV in China's Henan Province to keep them from bringing petitions to the Chinese congress.

And the list goes on.

"We have the knowledge to defeat HIV now, we know what is effective, and that is recognising that the epidemic is caused by human rights abuses, which fuel the epidemic," Joseph Amon, director of the HIV/AIDS Programme at Human Rights Watch (HRW), told IPS.

Since the virus was first identified in the early 1980s, HIV/AIDS has claimed 22 million lives and infected over 60 million people. Last year, five million people were newly infected and three million died of AIDS.

Between 2003 and 2005, the number of people living with HIV in East Asia rose by more than 25 percent and the number of people living with HIV in Eastern Europe and Central Asia rose more than one-third.

But according to HRW and others, in the 25 years since AIDS was first discovered, few countries have succeeded in controlling the epidemic. Those that have done so have provided comprehensive information on HIV transmission to their populations, addressed the vulnerability of women and girls to violence and abuses, ensured access to condoms, clean needles and methadone, and expanded access to anti-retroviral drugs.

Experts stress that vulnerability to HIV/AIDS is closely tied to the social marginalisation of people most affected by the virus. They include young girls, injecting drug-users, sex workers, men who have sex with men, migrants and prisoners, categories which are frequently victims of discrimination and other human rights abuses.

The connection between abuses of women's rights and their vulnerability to the disease is particularly evident in sub-Saharan Africa, where 58 percent of those infected with AIDS are women. According to HRW, in 2003, half of all governments in sub-Saharan Africa had yet to adopt laws specifically banning discrimination against people living with HIV/AIDS, while only one-third of countries worldwide had adopted legal measures specifically outlawing discrimination against populations vulnerable to the disease.

"If we attack the epidemic by attacking human rights abuses we can turn the epidemic around. The way we can do that is to have comprehensive prevention and information provided to people. We need to empower communities to take the step that they need to recognise the epidemic and respond to it," Amon told IPS.

Documenting and punishing human rights abuses related to HIV/AIDS is essential in raising public awareness and fighting the epidemic. Unless countries adopt approaches to HIV that are rooted in human rights principles and informed by scientific evidence, the epidemic will keep growing, HRW says.

The need for global HIV prevention based on sound scientific evidence is supported by groups like the Caucus for Evidence-Based Prevention, a coalition of U.S.-based non-governmental organisations and their international partners whose aim is to implement strategies with proven success in lowering HIV transmission rates.

In fact, according to the multidisciplinary group of more than 30 organisations, for different reasons, too often strategies with no proven efficacy have been promoted instead of those that are known to work.

For example, in Uganda, once one of the continent's greatest success stories in reducing HIV rates, infections are now on the rise again since the government and evangelical groups have pushed abstinence-only messages and attacked the effectiveness of condoms.

In Thailand, another initial bright spot in the fight against AIDS, condom use is down and infections of sexually transmitted diseases are up. HRW says the government has done little to reduce HIV infection among drug users or migrant workers, and leading AIDS experts say that Thailand's success is "history".

In Zimbabwe, some 350,000 people urgently need anti-retroviral drugs but only about 25,000 have access to them. The life expectancy for women is 34 years -- the lowest in the world.

In the United States, African American women are 19 times more likely to be infected with HIV than white women. The number of new infections has remained static for a decade, and HRW says that "programmes that once vigorously and creatively challenged communities to confront AIDS and learn how to protect themselves from HIV are being replaced by proposals to eliminate individual pre-test counseling and written consent, and simply have doctors routinely test everyone they treat for HIV."

"One of the ways to combat the epidemic is by having greater accountability by governments, having better cooperation between civil society and governments in terms of monitoring the epidemic, having specific concrete goals and having periodic reports that include civil society in terms of tracking progress," Amon said.

"In Southern Africa, for instance, there are many policies which maintain the vulnerability of women and there is also a lack of protection and enforcement of property rights abuses. The traditional systems often do very little to respond to those abuses," he noted.

At the just-concluded Group of Eight summit in St. Petersburg, Russia, leaders of the world's richest nations adopted a document pledging to achieve "tangible progress" in the fight against HIV/AIDS by 2010. However, activists said donors must also increase funding or they would miss their own target, set last year at the summit in Gleneagles, Scotland, of providing treatment to four million Africans by that same deadline.

In order to achieve universal treatment for HIV/AIDS, at least an additional 10 billion dollars would be needed, they note.

Many hopes are now pinned on the Aug. 13-18 conference in Toronto, where HRW has called on government representatives, United Nations officials and delegates to recognise that "only by protecting the rights of those most vulnerable, and by empowering those most marginalised, can the few success stories to date in the fight against AIDS be expanded and sustained."

Source: Alberto Cremonesi, Inter Press Service News Agency

AIDS Retains Stigma in Eastern Europe

2006-08-14T11:39:00.000+07:00

AIDS retains stigma in Eastern Europe, as fears rise of impending catastrophe

Adrian Calea found out he was HIV positive when he accidentally saw a doctor's note in his mother's purse when he was 10.

Two years later, he learned on the Internet exactly what that meant."

I thought about slitting my wrist," he said. "But then, I thought if I am going to die of this disease, at least I am going to go down fighting."

Calea is now 18, a student and hip-hop artist, healthy because of a cocktail of antiretroviral drugs. He is one of more than 7,000 Romanian children who were infected between 1987 and 1990 because the communist regime made it a practice to reuse syringes and give transfusions of untested blood.

Romania ended up with half the HIV-positive children in Europe.

The dirty needles are long gone. But a quarter century after AIDS was discovered, many HIV-infected people in Romania and the rest of Eastern Europe continue to struggle with discrimination and poverty.

Calea was forced to drop out of school in the southern Romanian city of Alexandria when he was diagnosed with HIV in 1998. The principal told his family that other parents would protest.

He now plans to play his music and visit schools to raise awareness about AIDS. He is probably the first HIV-infected person in Romania to publicize his condition to fight the stigma.

But AIDS remains controversial.

After officially denying the existence of AIDS during the communist years, Romania now requires AIDS tests for people getting married or applying for jobs _ a rule activists say perpetuates discrimination.

Health experts warn that infection rates in Eastern Europe will skyrocket if countries fail to adopt more pragmatic policies.

Ukraine has a national AIDS law that is recognized as a model in the region because it incorporates human rights protections for people living with HIV/AIDS. But the law is often disregarded, with patients often turned away by doctors when they seek help.

Ukrainian officials say more than 80,000 people have been registered HIV-positive since the first reported case in 1987. But other experts say as many as 500,000 people _ 1 percent of Ukraine's population _ could be infected.

Human Rights Watch accused the government this year of police abuse and medical discrimination against HIV/AIDS victims. The official stigma means HIV-infected people are marginalized _ forced into isolation in hospitals or their homes.

In Russia, there are 334,000 registered HIV-infected people. But the U.N. AIDS agency puts the figure at nearly 900,000 and others say the total could be above 1 million _ around 1 percent of Russia's population.

The disease is rapidly spreading beyond traditional risk groups _ drug users, gay men and prostitutes _ into the wider Russian population through unprotected heterosexual sex, with young people particularly vulnerable.

In Romania, about 11,000 people have HIV or AIDS, with about 350-500 new infections per year. However, infections could increase as the country's HIV children grow up into adulthood.

Parents in Romania are not required to inform the children they are infected until they are 18. Experts say the age should be lowered to 14.

Adrian Streinu-Cercel, who coordinates Romania's AIDS program, said about 20 percent of HIV-positive children are still unaware they are infected because parents are afraid to tell them.

"They already ask their parents 'why do we take so many pills?'" said Streinu-Cercel.

Calea hopes to spearhead a new rights movement and wants to encourage others to come out about their condition, saying that he felt liberated after he stopped denying that he was HIV-positive.

"Instead of waiting around, hoping for the elusive vaccine, we should try to improve our situation," he said. "I want to fight against discrimination ... It's about my future."

Source: Associated Press: writers Mara Bellaby in Kiev and Henry Meyer in Moscow.

Malawi: Success amid problems: The tale of ART

2006-06-04T22:09:00.000+07:00

by Raphael Mweninguwe, Malawi Nation Online, 24 May 2006

Malawi: Stigma and discrimination remain formidable barriers to access to treatment, prevention, care and support to people living with HIV and Aids in many countries and more practical efforts to address them need to be made, according to a joint report published end March by the World Health Organisation (WHO) and the UNAids on “3 by 5” and Beyond.

The findings of this report agree with what many people in rural communities in Malawi have always been worried about—inadequate access to antiretroviral therapy (ART).

Esnat Amidu, 34, from Zomba District says a number of HIV-positive people are “failing to access the antiretroviral therapy because of fear of stigma and discrimination in the communities”.

“Many women are afraid of stigmatisation and discrimination once they come into the open and declare their health status. Some have lost their marriages and societies have condoned that. Men are not willing to go for voluntary testing and counselling (VCT) because they think by doing so they will be considered weak,” says Amidu, who is HIV-positive.

A mother of three, however, noted that there “is still light at the end of the tunnel”.

“With the help of donors and NGOs many people are now realising that having HIV and Aids is not the end of life. We are now able to have access to treatment and that some members of society are accommodating those who are living with HIV and Aids,” she says.

“Ensuring equitable access to treatment, prevention, care and support will be a particular challenge as the world works towards universal access, especially for women, children, those living outside major urban centres and marginalised groups such as men who have sex with men, injecting drug users and sex workers,” says the report.

HIV and Aids is destroying families and communities and is weakening the economic life of countries. The National Aids Commission (NAC) estimates that about 900,000 people in Malawi are HIV-positive with about 87,000 deaths a year.

Davie Nyirongo, National Association for People Living with HIV and Aids in Malawi (Napham)’s programme manager says: “On paper we are able to say that many people are receiving treatment but when you go to the communities on the ground you will discover that what we say and what is there are quite different. The facilities are not there and in some cases people have no means to travel to where they can access the drugs.”

He says the situation is worse during the food crisis when many people living with HIV and Aids have difficulties in accessing food.

“Even if they get the ARVs they may not live long because they do not have food. Lack of food exacerbates the situation they are already in and they die faster as a result of hunger,” he says.
Executive Director for Malawi Network for People Living with HIV and Aids (Manet Plus)

Anock Kapira says: “Access without monitoring the patients would not achieve the results.”

He says monitoring and evaluating equity in access to services need to be given higher priority as programs are scaled up. He says it is the responsibility of everyone in the family to ensure that those living with HIV and Aids are neither discriminated against nor stigmatised.

He says there was no reason for people to fail to access ART “considering that government is now getting funds from the Global Fund for HIV and Aids, Tuberculosis and Malaria. But the questions we should be asking ourselves are: What will happen after the Global Fund? Should we consider collecting some sort of HIV and Aids levies?”

WHO says user charges for treatment and related health services, such as laboratory monitoring, remain a significant barrier to access, and funding mechanisms need to be reformed in many countries to enable the elimination of user fees for HIV treatment and care at the point of service delivery.

“Policies and interventions that empower women and girls and reduce domestic violence are also needed to ensure equitable access for women and girls. Implementation of a public health approach, including decentralisation of services, is also a key strategy to enhance equity,” reads the report.

Kapira says domestic violence that people are talking about could be related to HIV and Aids in the homes.

“Spouses should be able to accept each other and forge ahead with their life for the sake of children and family members that are being supported. Those affected and infected with HIV need a lot of support and counselling,” he says.

He says there should be no embarrassment when one is living with HIV and Aids, saying people should not be discriminated against at work or denied employment because of their HIV and Aids status.

A volunteer at Tovwirane HIV and Aids Organisation in Mzimba Johnson Kinyua said in a recent interview that access to ART was being hampered by a number of factors. One of which he says was the delay in decentralising ART sites to rural areas.

“We have a number of people who need the treatment but our efforts are hampered by lack of resources. We cannot meet our targets and because of this problem we do advocate for home-based care,” he says.

He, however, says even in places where people have access to ART “there is also a problem of monitoring. These people need to be monitored on regular basis to ensure that treatment is effective”.

He says it is important to put in place effective systems that could be used to monitor the scaling up of antiretroviral therapy and other interventions.

According to the report Malawi had three sites providing ART by January 2003 but by December 2005 the number of sites was 69.

The report has realised the fact that the target of treating 3 million people by 2005 has not been achieved.

“Although the target of treating 3 million people by the end of 2005 has not been achieved, the declaration by WHO and UNAids of a global health emergency on treatment access and the launch of the “3 by 5” strategy have helped to mobilise countries, communities and individuals to address the overwhelming and urgent need to provide antiretroviral therapy,” reads the report in part.

It is estimated that in the past two years, the number of people receiving antiretroviral therapy in low-and middle-income countries has more than tripled, and access to antiretroviral therapy in the world’s hardest-hit region, sub-Saharan Africa, has increased by more than 800 percent.

Source: Nation Online

Most HIV-positive Cambodians lack access to treatment

2006-06-04T22:05:00.000+07:00

Associated Foreign Press, 24 May 2006

PHNOM PENH - Kong Kim Sy tearfully recounted being shunned at every step - but what was especially painful for her is the memory of being thrown out of religious ceremonies in her home village.

The 50-year-old Cambodian woman is one of about 123,000 people living with HIV in this impoverished Southeast Asian country, which still has the highest prevalence of HIV/AIDS in the region at 1.9 percent.

But despite some victories - Cambodia was also the first Asian nation to halt a spiralling infection rate -- only a fraction of HIV-positive Cambodians have access to affordable treatment, and are increasingly the target of discrimination.

"I don't have a job to make money because people repel me," said Kong Kim Sy, who like a growing number of women became infected with HIV through her husband, who died four years ago.

"I have been facing difficulty for so long already. Villagers discriminate against me, especially when I try to attend religious ceremonies - they say I should not come," she told AFP at a conference Wednesday.

Some 100 Cambodians living with HIV had gathered to demand better treatment from the government and society, as well as access to effective treatment.

"Most HIV-positive people lack access to these relatively inexpensive drug treatments. This luxury is reserved only for those select few who can afford it," the Cambodian Alliance for Combating HIV/AIDs said in a statement.

The Alliance said only about 14,300 HIV-positive Cambodians currently have access to proper treatment.

"We are dismissed from our jobs ... treated like 'monkeys' in drug trials, evicted from our homes, abandoned by our families," the Alliance said.

Two years ago Cambodia found itself the focus of an international debate over an HIV vaccine trial when Prime Minister Hun Sen called off the plans to test Tenofovir on hundreds of prostitutes.

Some 960 sex workers were slated to take part in the trial, partly funded by the Bill and Melinda Gates Foundation, but boycotted it saying they wanted medical insurance for side effects for up to 40 years after the study.

The study was attempting to discover if it could reduce the risk of HIV among uninfected but sexually active adults.

Nearly 50 Cambodians die from AIDs every day, according to government figures, while another 22 adults are infected with HIV. There are 55,000 AIDS orphans, UNAIDS says. - AFP

Source: Channel News Asia

Focus on HIV/AIDS - Discrimination a blot on Jamaica's record

2006-05-21T10:13:00.000+07:00

Jamaica Gleaner, by Andrea Downer, Freelance Writer

JAMAICA'S SUCCESS in controlling HIV/AIDS and meeting the commitments made at the United Nations General Assembly Special Session (UNGASS) on HIV/AIDS in 2001 is being marred by persistent stigma and discrimination which abound in all sectors, including health.

"Because of fear of being labelled, and of the negative repercussions if their HIV-positive status becomes known, people are not getting tested and they are not seeking treatment," Lilieth, a member of the Jamaica Network of Seropositives tells The Sunday Gleaner.

GREATEST INHIBITING FACTOR
Lilieth was diagnosed HIV-positive 12 years ago and cites stigma and discrimination as the greatest inhibiting factors to the successful implementation of the UNGASS commitments.

"This denial by the PLWHA (People Living with HIV/AIDS) drives the epidemic underground and means that the programmes by the Ministry of Health and other agencies that are geared towards PLWHAs are not reaching the targeted population," she explained.

Lilieth said that sometimes, even people who know their status are in denial and will even refuse to disclose their status to health care providers when they go to seek treatment for opportunistic infections. She said this withholding of information stems from the fear that disclosure of their HIV status will impact on the level of treatment that they receive.

"The fear is valid," she said, as she has witnessed instances at one urban hospital where health care workers refused to, or took hours to treat a PLWHA who was critically ill, after the PLWHA disclosed her status.

She said the young woman had undergone minor surgery and had been sent home, when a complication developed. "She began bleeding profusely and we rushed her to the hospital. They were in the process of attending to her when she informed them that she was HIV-positive. She was told to wait a little until a doctor was located. It was several hours before she was attended to."

REFUSED MEDICATION
Lilieth recounted another instance in which an HIV-positive man was admitted for 17 days at the same public hospital, and health care personnel refused to attend to him for the duration of his stay. He was eventually sent home without even receiving medication.

In a third case at the same hospital, a woman who was HIV-positive and too ill to leave her bed, was not given assistance to procure medication from the hospital's pharmacy, which was on a different floor of the hospital. She was not able to enlist the help of her family members, as she had not told them of her HIV status, out of fear that they would reject her.

The PLWHA was only able to get the medication after several days when another PLWHA came to her assistance. All three incidents occurred within a three-month period, during the first quarter of 2006.

Miriam Maluwa, UNAIDS representative in Jamaica, said stigma and discrimination, which are part of a wider societal problem, are the greatest threat to the achievement of the UNGASS goals.

"As long as stigma and discrimination exist, we will never achieve universal access," Ms. Maluwa said with strong conviction. Her views are shared by former Health Minister John Junor who cited stigma and discrimination as Jamaica's greatest challenge in fulfilling the UNGASS commitments. He also said homophobia is a major part of the problem.

******
Name changed to protect identity
The article above is part of a five country series on the Caribbean's HIV/AIDS response since individual governments signed the United Nations General Assembly Special Session on HIV/AIDS Declaration of Commitment in 2001. It is now five years since those promises were made and time to assess the progress made. This is a collaborative effort between Panos Caribbean and The Gleaner.

"Positive partnerships" break down AIDS-discrimination in Thailand

2006-05-08T00:16:00.000+07:00

UNAIDS, May 1, 2006

THAILAND--When married mother Nang Noi was told she had HIV three years ago, the fear of the disease and of the social rejection that might go with it was overwhelming. "I cried for five days straight. I did not think I could go on," she said.

But through her own personal courage, the support of family and friends, and her involvement in a project that has given her the opportunity to set up two small businesses with her sister, Nang Noi has found ways to face her fears and counter AIDS-related stigma and discrimination.
Nang Noi set up two small businesses – selling dried seafood snacks and offering traditional Thai massage – using a micro-credit business loan through Thailand’s biggest non-governmental organization, the Population and Community Development Association (PDA).

Funded by the Pfizer Foundation in Thailand, the PDA project – entitled the ‘Positive Partnership Project’ - offers loans to partnerships of people living with HIV and a "buddy"(often a friend or family member who is not living with HIV) to set up small business ventures.

As part of the terms of the project, each "buddy" undertakes to be a community ambassador for people living with HIV. "Buddies" talk to friends and neighbors about the realities of HIV, trying to replace fear around HIV with facts.

"There is a great deal of stigma against people living with HIV - even when it comes to bank loans. A widespread – and unfounded - notion existed in Thailand that people living with HIV wouldn’t be able to pay back loans," said PDA founder, Senator Mechai Viravaidya. "We felt this theory could and should be tested."

"We realized that to really make a difference, we needed to tackle the need for people living with HIV to sustain their livelihoods and to break down stigma simultaneously," he added.

Since the official launch of the project in January 2004, around 750 partnerships running micro businesses such as food-selling, motorcycle repair and craft-making have started up, supported by PDA centers in north, northeast and central Thailand. By October 2005, PPP loan repayment rates of 84% exceeded the rate of repayments within the general Thai banking system.

"Nobody is more motivated to succeed than the people who are receiving these loans," said Senator Mechai.

Taking charge of their professional lives, people living with HIV involved in the project report feeling an increase in respect shown towards them by others, and a growth in their own feelings of self-respect.

And surveys of community members in PPP project areas indicated that ten months after the loans schemes began "anxiety levels" around (or fear of) AIDS and stigma against people living with HIV had dropped from around 47% to around 14%.

"In the beginning our neighbors were afraid to buy Nang Noi’s food. But after I talked to them, and explained the realities of HIV they slowly began to change and now regularly buy from us," said Nang Noi’s sister and PPP partner Ngeun.

Patrick Brenny, UNAIDS Country Coordinator for Thailand, underlined the vital role the project plays for Thailand and for UNAIDS work in the country: "Two of the most critical challenges facing persons living with HIV infection in Thailand today are the lack of sustainable livelihoods and the challenges of stigma and discrimination, both of which are priority areas for UNAIDS’ work in Thailand," he said.

"The PPP is an excellent example of addressing the longer-term economic well-being of people living with HIV and their families, while at the same time tackling the community-based stigma and discrimination which hampers the integration of HIV positive individuals and their families into those very same communities," he explained.

"As more and more people living with HIV in Thailand gain access to antiretroviral therapy through the National Health Security Scheme, the importance of the PPP and similar initiatives will grow in order to address both the economic as well as the social- and community-support challenges facing persons living with HIV infection and their families here in Thailand," said Brenny.

Source: PartnersThailand EForum

Implementing non-discriminative policy against AIDS urged in Zambia

2006-05-03T01:20:00.000+07:00

LUSAKA--The Zambia AIDS Law Research and Advocacy Network (ZARAN) has said that 90 percent of workers infected with HIV/AIDS in work places have been discriminated due to lack of anti-AIDS policies in most companies.

In a statement released in Lusaka Saturday, ZARAN communication officer Paul Sichalwe said Zambian businesses and government departments need to implement effective HIV/AIDS policies to stem the increase in discrimination cases.

He said private companies and the government departments should implement policies that embrace prevention, care, support and treatment for HIV positive employers, according to local media reports on Sunday.

"Without action by employers to protect the working rights of people living with HIV and AIDS, they will continue to suffer discrimination," he said.

Schalwe urged the government to support this process by implementing legislation that properly protects all Zambians from discrimination and most especially people living with HIV/AIDS.

He said ZARAN has been waiting for about five years for the government to keep its promise of enacting such legislation as a commitment made in 2001.

He said the government made the commitment under UN General Assembly special session declaration of commitment on HIV/AIDS in 2001 to enact, strengthen and enforce regulation and other measure to eliminate all forms of discrimination against people living with HIV/AIDS and members of vulnerable groups.

ZARAN is an non-governmental organization that is championing the rights of people living with HIV/AIDS through advocacy, research, education, law, policy reform and development.

Source: Xinhua

HIV Infections in Malaysia Women on Rise

2006-03-24T23:45:00.000+07:00

Associated Press, By EN-LAI YEOH , March 23, 2006

The number of women infected with HIV in Malaysia is on the rise, and housewives outnumber female sex workers four to one, the Malaysian AIDS Council said Wednesday. In 1986, when the first AIDS cases were discovered in Malaysia, there were no female victims, but by 2004 women accounted for 7 percent of all HIV infections, the council said.

Of the 67,438 people found to be infected with HIV between 1996 and 2004, 4,841 were women. Of these, 1,756 were housewives and 435 were sex workers, said the council, Malaysia's main non-governmental group dealing with AIDS. Housewives have been infected through their spouses, council President Dr. Adeeba Kamarulzaman said.

The council said it believes the actual number of infected women is higher because many do not come forward for tests and suffer the disease in silence. Officials say some HIV patients are unwilling to seek treatment despite government subsidies for medication because they fear being ostracized.

HIV/AIDS was not reported in any females in Malaysia until 1988 when two women were infected, the council said. That number rose to 111 new cases in 1994, and to 842 new cases in 2004. Overall, 7,575 men and women were diagnosed with HIV/AIDS in 2004 in Malaysia, a nation of 26 million, said the council, which regularly advises government health officials on policy.

The council data showed that 7,673 people have died of AIDS since 1986, including 582 women.

Source: Forbes.com

People in Botswana can get AIDS tests, but many hesitate

2006-01-31T05:41:00.000+07:00

They fear the disease and being shunned

THE ASSOCIATED PRESS, January 29, 2006

Gaborone- When Botswana first offered free AIDS treatment, health authorities in this country, one of the world's most infected, braced for a rush of patients.

It did not happen.

It turned out that most people were so afraid of the disease, and the frequent social ostracism, that they did not want to know if they were infected.

The reluctance to get help in one of the few African nations able to give it prompted a radical rethinking of how testing is done. Now, HIV tests are offered as a part of any medical visit.

In most places, patients are left to ask for a test themselves, then put through extensive counseling to prepare them in case HIV infection is found.

Despite years of education campaigns, the World Health Organization estimates that less than 10 percent of infected people in the African countries at the epicenter of the AIDS pandemic realize that they have the virus.

The decision of Botswana to start routine testing initially caused alarm among international health advocates, who worried that patients' rights to confidentiality and informed consent would be compromised.

"I think the first right of a human being is to be alive. All other rights are secondary," countered Segolame Ramotlhwa, the operations manager for the national treatment program known as Masa, or New Dawn.

He argues that confidentiality was being confused with secrecy, making doctors reluctant even to suggest testing for the disease.

Doctors here believe that pulling patients aside for special counseling is intimidating and helps fuel the stigma that keeps patients from seeking help.

"In fact, we found that people who had not made their minds up quite often were definitely against it once the pretest counseling was done," said Dr. Howard Moffat, the medical superintendent at Princess Marina Hospital in the capital, Gaborone.

"I think the medical profession itself ... played a major role in creating this fear of AIDS and this quite irrational reluctance to be tested."

Since the beginning of 2004, Botswana has treated HIV tests like any medical procedure.

Patients can refuse, but doctors say that most don't. They estimate that up to 35 percent of the country's 1.7 million people now know their status.

Source: Journalnow.com

HIV-positive Malaysians shying away from treatment fearing stigma

2006-01-31T05:16:00.000+07:00

Asociated Press, 1/23/2006

Malaysia--Most Malaysians infected with HIV are unwilling to seek treatment because they are afraid of being ostracized in this conservative Muslim country, a news report said Monday.

Despite government-subsidized anti-AIDS drugs, studies showed fewer than five percent of the 65,000 documented HIV-infected Malaysians were seeking treatment, the New Straits Times said quoting Christopher Lee, the senior specialist and consultant for infectious diseases at the Kuala Lumpur Hospital.

"People are afraid of the stigma," Lee was quoted as saying.

Statistics compiled for 2003 by the government's National HIV/AIDS Treatment Registry showed that only about 1,785 HIV-positive patients were receiving care at government hospitals, while about 200 others were being treated at private medical centers, Lee said.

Lee said government subsidies allowed AIDS medicines to be sold cheaply, especially with the introduction of generic drugs from India. A cocktail of treatment drugs would cost a patient just 220 ringgit (US$62; €51) a month.

Lee was in a meeting with health officials Monday and could not be reached for further details. His assistant, who isn't authorized to speak to the press, declined to comment.

According to the Health Ministry, about 65,000 Malaysians have been diagnosed with HIV since 1986, when the first case was discovered. Of those, 9,444 developed full blown AIDS and 7,195 have since died.

Non-governmental organizations believe the official figures are too low. A U.N. estimate for Malaysia last year put the figure at 81,000 infections, saying the epidemic in Malaysia has spread from high-risk groups to the general public.

Nafis Sadik, the U.N. special envoy for HIV/AIDS in Asia, has urged Malaysia to stop ignoring its epidemic and remove the stigma attached to HIV/AIDS.

Source: China Post

The Bahamas: More AIDS Patients Shunning Treatment

2006-01-31T05:11:00.000+07:00

by Royanne Forbes-Darville, The Bahama Journal, 21st January 2006

BAHAMAS- A disturbing trend is developing among HIV/AIDS patients in The Bahamas, health officials said yesterday.

Approximately 21 Bahamians infected with the HIV/AIDS virus died abruptly last October, the largest number of persons to die of the disease in any one month. This, according to officials, is part of a disturbing trend of patients who are not seeking treatment or follow-up care.

Dr. Perry Gomez, director of the national AIDS programme, told The Bahama Journal that if these individuals were on the anti-retroviral drug their lives could have been prolonged.

"That is the largest number of persons to die in any one month [of HIV/AIDS in The Bahamas]," Dr. Gomez said yesterday during the AIDS Secretariat’s annual breakfast at Addington House, Sands Road

"They were all people who had never been on treatment and so it really confirms and validates the need for the ‘know your status’ campaign [this year’s theme chosen by The HIV/AIDS Secretariat] because people wait too late and then they come in, crash and die."

Dr. Gomez said that it was disheartening when persons living with HIV/AIDS decide not to seek treatment when the drugs are available, and most importantly free."Part of that is due to the fear of stigma and discrimination," he said.

"So we have to continue to fight stigma and discrimination as we move forward," Dr. Gomez added. "If we can get more people with AIDS to educate the public and speak out, that would be good; however, while we do get [infected persons] to speak privately, very few people in small communities are willing to go public because most are ashamed to say ‘I have HIV/AIDS’."

In 2002, around 300 people were a part of the country’s anti-retroviral programme.
AIDS patients who once paid around $14,000 per year for the anti-retrovirals, now pay a tenth of that cost, thanks to slashed rates.

According to officials, government spends around $6 million every year to care for AIDS patients.

There are nearly 2 million people living with the disease in this region.

Director of the HIV/AIDS Centre, Nurse Rosa Mae Bain, explained it is crucial that HIV/AIDS patients take their medication.

"We have had many successes in our country," Nurse Bain said.

"We have seen a decline in new cases in HIV infection…a decline in the number of persons being admitted to hospital and this is why we are starting the mass media campaign on getting to ‘know your status’."

According to Nurse Bain, the campaign aims to encourage persons who are HIV positive to attend the hospital and have their "CD4 count and their viral load" checked so that they can begin treatment.

"But what we have started to see is an increase in deaths …and a significant number of these are in young people who knew they were HIV infected but who did not come in for treatment or follow-up care," she said.

Source: The Bahamas Journal online

Stigma associated with Aids doubles the misery of those who are ill

2005-11-03T08:38:00.000+07:00

By Susie Clark, senior programme manager at the Aids Consortium, October 30, 2005

South Africa- This week, HIV/Aids experts and activists from throughout southern Africa gathered at a conference in Pretoria to discuss the devastating effects of Aids-related stigma and discrimination and to come up with strategies for combating them.

Bongai Mundeta, director of the Regional Aids Initiative of Southern Africa, which organised the event, stated that "fighting stigma and discrimination is as important as developing medical cures for HIV/ Aids".

Anyone who doubts the truth of her comment need only talk to some of the brave men and women who are living openly with HIV. Many of them will tell you that, worse than living with the disease is living with the discrimination they experience daily.

It is the fear of becoming the victim of such stigma that prevents so many from testing or disclosing, even to their partners and families. Under the cover of such silence, the virus spreads and takes the lives of those who would rather die than reveal their status by seeking treatment and support.

From its earliest days, HIV was stigmatised by its association with marginalised groups such as gay men and sex workers. As it spread to the wider population, HIV has continued to be identified with deviant sexual behaviour, and the real, underlying causes of the epidemic - poverty, inequality and lack of development - have been obscured.

Those who contract the virus are judged and blamed for "choosing" to be "irresponsible". In recent years, the face of the epidemic has become predominantly that of poor, black women who are depicted as the innocent victims of their male partners' promiscuity. Innocent or not, they are still kept at arm's length.

Outward manifestations of the disease - weight loss and skin rashes - only compound the notion that "they" are different from "us".Fear and ignorance about the actual difficulty of transmitting the disease causes communities and families to isolate, exclude and even abandon those carrying the virus.

The availability of anti-retrovirals and awareness-raising campaigns have had some impact on discrimination against people living with HIV and Aids, but it is still with us and continues to cause untold suffering.

Several speakers at this week's conference raised the difficult but necessary question: have some of our HIV/Aids policies and programmes actually perpetuated or even contributed to the problem?

Jason Wessenaar of the University of Pretoria's Centre for the Study of Stigma suggested, for example, that by always casting women as the helpless victims and men as the perpetrators, we have missed opportunities to reach men and involve them as potentially positive role models.

Research conducted by the University of Pretoria found that discriminatory attitudes and actions by healthcare workers had also contributed to the Aids stigma.

In addition, South Africa's social grant system has created a form of reverse discrimination by awarding disability grants to those with HIV while ignoring the plight of the HIV-negative population, who are equally poor and in need of assistance.

Speaking at the conference, Lynde Francis, a prominent Aids activist, said her private name for HIV is "the great revealer".

Instead of viewing the virus as an entirely negative phenomenon, she pointed out that it had opened up dialogue about previously taboo topics and made it possible to tackle issues such as gender inequality, poverty and discrimination against marginalised groups as never before.

In other words, HIV can itself be a vehicle for fighting stigma.There is no silver-bullet solution for eliminating stigma and discrimination against people with HIV and Aids.

What is needed, most speakers agreed, is a multifaceted and holistic approach that involves all of us - from community and religious leaders to legislators to the HIV-positive population to you and me.

Speaking at the conference about her personal experiences with HIV-related stigma, Victoria Bam, an Aids activist from Namibia, said: "HIV and Aids are manageable with ARVs, but to fight stigma and discrimination, there is no medication. It's up to us."

Source: The Sunday Independent

Understanding HIV stigma essential

2005-10-16T03:10:00.000+07:00

There is a need for more effective interventions in dealing with HIV/Aids stigma as education is not enough – legal measures and activism are necessary to challenge the power relationships that sustain stigma and discrimination.

This is according to the first report, Understanding HIV/Aids stigma – a theoretical and methodological analysis, emanating from a Human Sciences Research Council (HSRC) study designed to develop stigma research in southern Africa.

The report points out that there are hundreds of people who go to their deathbeds without admitting to their friends and family that they have HIV/Aids. There are equally hundreds who seek help under cover of darkness, or far away from their homes, as they are deeply ashamed of their plight.

Unless the stigma surrounding HIV/Aids is better understood, it will continue to be a serious barrier to the testing, treatment and care of people living with HIV/Aids (PLHA). Its negative effect will increasingly affect public health campaigns, and society as a whole.

Assistance in management of HIV/AidsThrough reviewing literature on disease stigma, that focuses on but is not restricted to HIV/Aids, the monograph aims to assist management of the HIV/Aids epidemic by:
*developing more sophisticated theoretical approaches to understanding stigma;
*developing research methodologies that better understand the historical and cultural specificity of stigma and its impact; and informing the development of better anti-stigma interventions.

Key to this report is the very definition of HIV/Aids stigma itself. The authors point out that stigma has been used to describe an entire range of obstacles to HIV/Aids management, from restricting the rollout of antiretrovirals (ARVs) to lack of condoms in schools.

Instead, they choose to define stigma as an ideology, one which links a biological illness to negatively-defined behaviours or groups, for example, linking HIV/Aids with promiscuity, or commercial sex workers. In short, disease stigma is “negative social baggage” associated with a disease.

Several issues exploredWorking from this premise, the first seven chapters feature analyses of recent academic work on disease stigma, and include research that explores:
*Prejudice and the relationship between racism, sexism, disability, HIV/Aids and other medical conditions;

The link between stigma and power;
*Self-stigmatisation;
*Differential treatment and discrimination; and
*Instrumental and symbolic stigma.
*The remainder of the report looks at practical proposals arising from the research.
*Firstly, it suggests steps to develop a research agenda with a specific focus on HIV/Aids stigma in southern Africa. Particularly, how HIV/Aids stigma has local histories and meanings, how this impacts on PLHA, and thus how research queries should be structured.

Methodological approaches proposedThe report further proposes a variety of methodological approaches. For example, conventional tools such as interviews and surveys could be integrated with alternative methods like body and stigma mapping, and diary-keeping.

Finally, the need for more effective interventions in dealing with HIV/Aids stigma is recognised. As the authors point out, education is not enough – legal measures and activism are necessary to challenge the power relationships that sustain stigma and discrimination.

As with racism and sexism, there is no magic bullet that can eliminate stigma. The report aims to significantly strengthen the base of future research in this area. It makes a crucial contribution to the discussion of HIV/Aids stigma and, ultimately, towards management of both societal attitudes and the disease itself.

Source: Health24.com

India: The fight goes on

2005-10-16T02:40:00.000+07:00

By ANUJ CHOPRA, The Hindu, 2/10/2005

The fear of testing positive for HIV and of then being ostracised is what holds back those affected from the ambitious programme of free anti-retroviral therapy.

India--"Hai HIV toh kyon ghabrate ho? Upchar karke apni umra badha sakte ho. (Why fear if you have HIV? Treatment can prolong your life.") Message on a decal pasted on a highway truck.

IN Mumbai, the AIDS capital of India, your tryst with this dreaded virus takes on epic proportions at Sir J.J. Hospital, the city's largest general hospital. As you leave behind the din of Byculla, and sidle past crimson stains of tobacco spewed on stairs, to the second floor, you notice a crowd. There are people sleeping on the floor, crammed on benches, packed in queues, all waiting — many for hours, some even for days — for their turn to meet the anti-retroviral therapy (ART) counsellor. People diagnosed with HIV, not just from Mumbai, but also even from far-flung places of Madhya Pradesh and Orissa throng here for ART.

Kailash Nath (name changed), a 52-year-old gaunt man impatiently waits on a hospital bench, a handkerchief covering his mouth against the hospital smell. After three gruelling hours of waiting, he finds his patience stretched to the limit. But Kailash is determined to not leave without treatment.

He first tested positive for HIV in mid-1997 — he's not comfortable disclosing the source of his infection — but ignored it so far as he couldn't afford expensive antiretroviral (ARV) drugs. Working as a contract labourer, earning a meagre Rs. 2,000, and supporting a family of four, paying close to Rs. 3,000, at that time, for ARV drugs every month was too much. He fell severely ill with tuberculosis two years ago, he says, but could never begin ART.

However in January this year, the National AIDS Control Organisation (NACO) began a programme to offer free anti-retroviral drugs at 25 centres across the country, with the help of World Health Organsiation (WHO) and UNAIDS. It seems to be giving Kailash — and several like him who cannot afford ARVs — a new lease of life.

For many, ARV still out of reach
"Even today's rock bottom prices of ARV drug cocktails — Rs. 1,200 to Rs. 2,500 per month —
are far beyond the reach of the low income group," says Dr. Alka Deshpande, AIDS specialist at J.J. hospital, which takes on roughly 25 per cent of India's total ART load.

"Even for those who could afford them, crimps in family budgets meant discontinuation of the dosage. With this free programme, people are less susceptible to doing that."

Vidya Rhaokhade, an ART counsellor chides Rakesh Bapat (name changed), 34, for stopping his dose three months after initiating the programme. After regaining health temporarily, Rakesh, a clerk at a government office, began skipping his ARV doses as it induced sleep and made him gain weight, and thus impinged on his work. Because of this lapse, Rakesh's CD4 cell count has plummeted to dangerously low levels. The counsellor exhorts him to unswervingly stick to his ART regimen along with a rich, nutritional diet.

"If you stop again, your body will develop resistance against these drugs," she warns Rakesh.

She prescribes the expensive Efavirenz based ARV treatment for him — a prescription that would be unaffordable and therefore out of Rakesh's reach, if it weren't for this free programme.
India is spending $300 million on the current National AIDS Control Programme, and has taken a World Bank loan of $191 million. The Geneva based Global Fund has pledged a grant of $ 107 Million to India to fight HIV, malaria and tuberculosis out of which $12.6 million have already been disbursed. A recent signature on June 27 will allow disbursement of $21.7 million more by the end of August to aid this programme in six States with the highest prevalence of HIV, Dr. Richard Feachem, Global Fund's director, said from Geneva.

Dr. S.Y. Quraishi, programme head, NACO, is enthused by the success of 25 centres — which have reached out to over 30,000 people in the past seven months. NACO plans to offer free ARV therapy at 75 centres across the country by year-end, he announced, which would reach out to at least a lakh more. If all goes well, there could even be 100 centres across the country, by the beginning of next year, that'll treat thousands more. Dr. Quraishi rubbishes fears that this programme will be valid just for a year. "Our commitment is to provide life-long treatment," he says.

Impediments
However, the programme needs to be scaled up several notches. There are 5.1 million believed to be living with HIV in India, the highest in the world after South Africa. According to the WHO, roughly 7,10,000 of these are in need of the gold standard of AIDS treatment immediately. The 30,000 who receive it are far below the WHO treatment target of 3,55,000 people this year.

"Indian pharmaceutical companies are global exporters of low-cost generic ARV drugs to over 200 countries. Their supply is not a problem," says Dr. Alka Gogte, a counsellor with UNAIDS.

"The problem is the slack delivery systems not reaching out to people," she believes.
Dr. Quraishi also evokes concern about the rapid growth of resistance for first-line regimens and the unavailability of second-line ARV drugs to counter them. "I am extremely worried about this. The Patent's Act prevents generic production of second-line ARVs. They are nearly 21 times costlier than first-line ARVs."

Stigma, an area of concern
The expensive paediatric formulation of ART, too, is absent from this programme and will only be made available in the next few weeks. For now, ARVs for adults, in smaller doses are used for the treatment of children. But that's not as effective.

Only 14 out of the remaining 50 ART sites proposed to start by year-end have so far received central government clearance. Dismal infrastructure of public hospitals across the country, says

Dr. Quraishi, is creating logistical problems in setting up testing labs and in training doctors and counsellors for the programme.

Dr. S.J. Habayeb, WHO representative in India, points out that the stigma associated with HIV is another area of grave concern. "The fear of testing positive, the fear of being kicked out of one's community if found HIV positive and public humiliation is what's holding people back from this programme," he says.

Those who can afford ARVs, experts say, prefer the private sector for treatment, to avoid the humiliation of public hospitals. That's a pity, believes Dr. Habayeb, because with private sector involvement, this programme could have been far-reaching.

"Since 84 per cent of cases of HIV are transmitted through sexual contact, this disease has an element of morality associated with it. So HIV patients are tagged immoral even if they've got it through an infected needle. And that perception needs to change," says Dr. Vimla Nadkarni,
Head of the Department of Psychiatry, Tata Institute of Social Sciences.

In June, this year, Kalu Khurva, a 34-year-old HIV positive man jumped to his death from the third floor of J.J. hospital. Earlier in April, two men, both 28 years old committed suicide by jumping from the fifth floor of the hospital, on two consecutive days. Considering the stigma associated with HIV/AIDS in India, perhaps the only way they saw to ameliorate their suffering, was to end their lives.

There is still hope
Heena and Jagdish Patel, 24 and 28 respectively, a married couple from Surat, too, wanted to end their lives when they first tested positive. "Log HIV ke naam se ghabrate hain. Lagta hai jaise zindagi hi khantam ho gayi (HIV makes men shudder. It whittles away all hopes of survival") they say.

Heena was infected by her first husband, three years ago, who later died of AIDS. A widow and HIV positive, she was a virtual outcast in her own family. After a few despairing years, she met Jagdish, who runs a tea stall in Surat, through India's first marriage bureau for HIV infected people in Surat.

Today, Heena and Jagdish are like any other happily married couple, giving each other hope and succour. "There's a lot of loneliness in this condition, because of bleak family and social support. Our marriage has brought about companionship," says Heena with an engaging smile. "'You are HIV+, but you will live, we give each other hope whenever spirits go damp," says Jagdish. Jagdish and Heena have to travel to Ahmedabad to avail of the Government's free ART programme and hope that this will someday begin in their hometown, Surat.

"Such marriages are the biggest sign that all those with HIV can lead normal lives," says Dr. Gogte.

Having come a long way since in 1992 when India became the first country to seek World Bank assistance to begin a national programme to address the AIDS issue, can India really turn around its AIDS situation in the near future?

Dr. Denis Broun, India representative of UNAIDS, is cautiously optimistic that the Government's commitment to address HIV can turn the situation around. "The fact that India is involved in high-level clinical trials for AIDS vaccines shows how the country is at the cutting edge of HIV science," he says. "As high risk States like Tamil Nadu and Maharashtra have recorded stabilisation and even a decrease of AIDS prevalence, there's every reason to be optimistic."

Source: The Hindu

SOUTH AFRICA: Rural health facilities struggle to provide healthcare

2005-09-16T03:37:00.000+07:00

DURBAN, 15 September (IRIN) - Pregnant HIV-positive women in South Africa can now get nevirapine, an anti-AIDS drug that helps prevent the transmission of the virus to their babies, at every hospital and almost all health centres and clinics.

A single dose of nevirapine is administered to the mother during birth, and a single dose is given to the newborn infant.

But a visit to the maternity ward at Hlabisa Hospital in northern KwaZulu-Natal province illustrates the challenges that the prevention of mother-to-child transmission (PMTCT) programme still faces, particularly in rural areas.

In the last two months the ward has recorded six maternal deaths: all the mothers were HIV-positive, but none had been on antiretroviral (ARV) treatment prior to being admitted to the hospital to give birth.

"Our problem is access to ARV therapy for pregnant mothers - we just have nevirapine [available]," admitted Dr Emmanuel Mbatha, who runs the maternity ward together with Dr Bongisani Manukuza.

Although Hlabisa Hospital received accreditation from the government to provide ARVs in the Umkhanyakude health district in July 2004, doctors said the site was not yet fully operational, and there was little cooperation between the ARV clinic and the antenatal ward.

While most efforts in the antenatal ward are focused on ensuring that the babies are born HIV negative, the physical condition of the mothers is often neglected.

PMTCT interventions, such as administering two single doses of nevirapine, are cheaper than the long-term provision of ARVs to mothers living with HIV/AIDS.

Healthcare workers on the ward acknowledged the inadequate infrastructure and poor post-natal and nursery care. "Once the women have delivered we don't know what happens to the mothers and their babies," Dr Manukuza told IRIN.

For example HIV-positive mothers were counselled to breastfeed exclusively, but there was "no follow-up", he added.

Another major challenge was the prevailing and widespread stigma against HIV/AIDS, which made many pregnant women reluctant to be tested for the virus. Most of those who agreed to be tested did so without the support or knowledge of their partners and husbands, the maternity ward staff observed.

According to Mbatha, HIV-prevalence in the antenatal ward was high, ranging between 60 percent and 70 percent. "It is most unusual for us to see a HIV-negative mother," he commented.

An estimated 36 percent of the pregnant women who attend state antenatal clinics KwaZulu-Natal test positive, making the province one of the hardest-hit areas in the country.

The rundown hospital and its 15 rural clinics serve a population of 222,000; it has 294 beds, but no ambulance service or blood bank. Two young doctors fresh out of medical school run the antenatal ward, which is staffed by two nurses and 16 health workers. There are an average of 55 patients but only 20 beds; full-term women often have to share, while others sleep on the floor.

"It's a mess ... I have so many patients, it's sometimes impossible to see all of them every day. Some days, I have only time to see high-risk patients," Mbatha said.

Staff shortages have restricted the doctors from performing caesarean sections on all HIV-positive mothers to reduce the risk of MTCT, as is recommended by the World Health Organisation (WHO).

In addition, the ward regularly runs out of medicines and medical supplies. Even HIV-testing kits are not always available. "We sometimes even run out of simple cuffs to measure blood pressure," said Mbatha.

The personnel are becoming increasingly frustrated. "Every day, in order to get something, you must fight," a senior member of staff who asked not to be named, told IRIN.

But Mbatha and Manukuza regard themselves as fortunate, because Dr Candice Roberts, a gynaecologist from the Red Cross Flying Doctors service who also runs the maternity ward at Durban's McCord Hospital, has been visiting the antenatal ward once a month for the past three years to help run it more efficiently and conduct difficult caesareans.

The Flying Doctor and Health Outreach Service is a nationwide medical network that provides air ambulance, health outreach and emergency rescue services. Health professionals, most of whom work on a voluntary basis, are flown to rural hospitals to provide clinical services to thousands of patients a year.

"You help [rural hospitals] to do their best ... with the limited resources they have," Roberts said, adding that there was "no incentive for staff to stay here [at Hlabisa Hospital]. Most health workers here are overworked, stressed and strained".

Nevertheless, Roberts noted that there had been gradual improvements: new wards were being built and more doctors and paramedic staff have been employed.

There are no other specialists apart from Roberts at Hlabisa Hospital - no paediatrician, no anaesthetist, no surgeon or optometrist. Without an anaesthetist, for example, patients can only receive spinal anaesthetics that numb the body from the hips down.

Patients have to be referred to the nearest better-equipped public hospital in Empangeni, about 100 km away, for all procedures requiring a specialist. Empangeni is the referral hospital for the region and Mbatha said an ambulance could take up to six hours to arrive because of the demand for medical transport.

The doctors at Empangeni were often reluctant to take patients referred from Hlabisa. "They say they are too busy," Mbatha commented.

It is the patient who suffers most from such administrative wrangles. The most recent example is Khanyile Zungu (not her real name) who sat on her bed in a room full of expectant mothers in Hlabisa, staring blankly at the wall.

A few days before her due date, Zungu had been told that her baby had died. Four weeks later, the baby had still not been removed from her womb.

Not only was Zungu traumatised by the death of her baby, her life was at risk because the placenta had started decomposing.

Health workers had first tried inducing labour to extract the dead body. When this was unsuccessful, Mbatha tried to transfer Zungu to Empangeni Hospital. The operation needed a specialist, but the referral hospital refused to take her.

"We were told to solve the problem ourselves," said Mbatha. Dr Roberts could not perform the operation on her visit because Hlabisa has no anaesthetist. As a result, Zungu had still not had the operation at the time IRIN visited the hospital.

Source: Reuters/IRIN

Namibia: Get rid of stigma in battle against AIDS pandemic

2005-09-15T10:34:00.000+07:00

By Surihe GaomasWindhoek , New Era (Windhoek), September 14, 2005

NAMIBIA- "THE trouble we have here is stigma. Stigma kills the person before the disease, making stigma the number one enemy."

This was the view if facilitator of Home Based Care Training Ben Motinga when he addressed peer graduates in Windhoek last Friday.

Speaking strongly about the growing problem of stigma and discrimination against people infected with HIV/AIDS, Motinga said the only way to win the battle against the pandemic is to break the silence and stigma associated with it.

It is a well-known fact that a person infected with the HIV virus can only live a positive lifestyle if relatives and community around them provide holistic support and care. This in a nutshell is the power of humanity to tackle the pandemic head on.

However, in most cases many HIV-positive people are either shunned or hidden by family members due to ignorance and shame.

Some are even kept in kambashus (cuca shops) or makeshift shacks built behind most households in residential areas in the city.

Echoing the same sentiments, secretary general of the Namibia Red Cross Society Razia Essack-Kauaria said: "The beneficiaries sometimes don't want to receive food rations from a Red Cross official because of the stigma."

Stigma and discrimination is said to be more evident in the urban areas of the country, rather than the rural areas. The reason for this is that in villages, the extended family support structure is much more reliable than the individualistic setup found in the city areas.

This kind of situation ultimately ends up in neglect and with patients being considered as outcasts that are not provided with the opportunity to die with human dignity.

"That's why the obstacle is stigma and society must get rid of this killing mentality," said Motinga, who is a home-based care volunteer.

"We have to fight HIV/AIDS the killer disease, not the person suffering from it," said counsellor Mwadina Sibiya, who delivered the keynote address on behalf of Governor of the Khomas Region Sofia Shaningwa.

She commended the graduates for their dedication in assisting government to address the growing problem of HIV/AIDS in the country.

Sibiya however noted with concern the lack of bed space at the hospitals in the country, thus placing a heavy burden on the health infrastructure and its staff.

In view of this, it has become imperative that home-based care volunteers play a vital role in caring for those infected in a home environment.

"I am very worried, the hospital beds are overflowing, the health workers are overloaded and more such training has to be provided by the year 2030 as part of Vision 2030," said Sibiya when addressing the 35 new home-based care volunteers.

A call was also made for society to break the silence on HIV/AIDS, get rid of the stigma and discrimination attached to the disease and to look at overall inclusiveness.

"We must aggressively deal with opportunistic infections and work with families and communities to care for children and young people to protect them from violence, abuse and ensure that they grow up in a safe and supportive environment," concluded Sibiya.

Currently, Namibia is ranked as one of the three countries in Africa with a successful distribution of Anti-retroviral drugs (ARVs), alongside Botswana and Uganda.

According to statistics from the Namibia Red Cross Society, so far 89 beneficiaries are on ARVs in the Khomas Region alone, with over 4 000 active volunteers in the country.

The Ministry of Health and Social Services together with the Namibia Red Cross have ensured a remarkable 100 percent compliance of patients on ARVs especially in the Caprivi, Otjozondjupa and Ohangwena regions.

The graduation ceremony of the third phase of Home Based Care Givers was held under the theme "Power of humanity is to protect human dignity".

Source: AllAfrica.com

GHANA: AIDS treatment on rise, but stigma still around

2005-08-24T10:12:00.000+07:00

17 Aug 2005, IRIN

ACCRA - With anti-AIDS drugs becoming widely available in Ghana, thousands of HIV-positive people are living longer, healthier lives but health workers say they continue to hide their status, frightened of rejection by friends, family and colleagues.

The government began heavily subsidising antiretroviral (ARV) treatment for people living with HIV/AIDS after receiving a US $15 million grant from the Global Fund to Fight AIDS, Tuberculosis and Malaria in 2004. This year another US $6 million from the national purse was added.

Some 2,600 Ghanaians are now receiving the life-prolonging medication. "Treatment is so readily available, unlike what pertained a few years ago - people who were on the verge of death are now looking healthy and going about their everyday duties," Eric Pwadura, an official at Ghana's AIDS Commission, told IRIN.

Although more people were receiving ARVs than ever before, it was still difficult to get a job and a place to live; even retaining relations with friends and family was not easy, according to Kakra Ankobiah, programme director of the West African AIDS Foundation (WAAF).

The WAAF operates a hospice specialising in HIV/AIDS treatment and care, and also runs outreach programmes in the capital, Accra.

"More people are alive today - thanks to ARVs - but no one wants to employ them; landlords or other tenants are evicting and ostracising people who openly reveal their status. These are problems we have yet to deal with as a society," said Ankobiah.

While the Ghana AIDS Commission estimates that about 90 percent of Ghanaians are aware of HIV/AIDS, health officials concede that the stigmatisation of people living with the virus remains the biggest challenge.

According to Sakyi Awuku Amoa, head of the commission, earlier campaigns inadvertently contributed to creating the problem by associating AIDS with death and focusing too heavily on the fear factor.

"The epidemic of stigma, discrimination, blame and collective denial is making all preventative interventions ... very difficult," Awuku Amoa admitted.

Patients and health workers agreed that enabling people living with HIV/AIDS to afford treatment, keep their jobs and not be dependent on their families could go a long way towards combating stigmatisation.

"It all depends on the financial empowerment ... to support ourselves and our families, have our own accommodation without the fear of being ejected, and have a well-paying job," Haruna, a 38-year-old HIV-positive teacher, told IRIN.

He would never have been able to afford his medication without the government subsidies that allow him to spend 50,000 cedis (less than US $10) a month on ARVs: the commercial retail price of his treatment is between $800 and $850 - far beyond the limits of his $100 a month salary.

"Only when we are empowered can you expect a majority of people living with AIDS to have the confidence to come out and make their status open," Haruna pointed out.

WAAF hospice officials say most of their AIDS patients have been shunned by their families, who can't afford to look after them.

"Our in-patient capacity is limited to 20 beds, and when the hospice is fully booked about 70 percent of all our cases are patients who have been dumped here by their relatives. They only turn up again after the patient is dead to collect the corpse for burial," Ankobiah told IRIN.

"But it is slowly easing up and people are beginning to accept their relatives' condition," said Ankobiah, whose clinic provides free treatment after payment of a 30,000 cedi, or US $10, registration fee.

Nevertheless, Dela, 38, an HIV-positive teacher also on subsidised ARV treatment, said it would be unthinkable to declare her status publicly - she runs her own nursery school and any mention of AIDS would be bad for business.

"I do not think it is time ... to declare my status, due to the possible negative repercussions that can come up," she affirmed.

When her sister first found out Dela was HIV positive eighteen months ago, she urged neighbours to withdraw their children from the school.

"Rumours went around, especially when I started the ARV treatment and initially lost some weight, but now it does not bother me. I know I have the disease and I just have to live with it.

Fortunately, I have always been slim, and since I still go about my duties like any active person, the rumours have died down," Dela told IRIN.

Afua, 42, a foodstuff trader who lived in the next suburb, was not so lucky: she died three years ago - just before the government-subsidised ARV programme started.

"When people realised she had the virus, they stopped buying her foodstuffs and she had to depend on her aged mother for her upkeep," Dela said. "As she grew weaker, prior to her death, she was confined to the outer room of her family's rented apartment with her own cup and plate, and prevented from going to the main bedroom area."

Source: IRIN

Beating HIV/AIDS stigma and discrimination

2005-08-24T09:56:00.000+07:00

by RYDER GABATHUSE, August 19, 2005, Mmegi News

FRANCISTOWN- After she was grounded by a long time illness, Mavis Banda was relieved last year when she finally knew the cause of her dwindling health. She was living with HIV/AIDS. Before she could overcome the shock of the discovery, another nightmare started.

She was stigmatised and discriminated. Before she knew her status, the now well-built 33-year-old Banda moved from one health facility to another without any hope of improvement.

“I was very sick and very thin. I could not do anything on my own.” Her immune system was seriously failing her. The source of her health problems was unravelled by Tebelopele Voluntary Testing and Counselling in February last year.

Little did she know that there was another mountain ahead of her to climb, just because of her HIV status. When she arrived home, she expected empathy from members of her family.

Instead, she was shocked when her grandmother rejected her outright after learning that she was HIV positive. “She told me never to set foot at her place because all her children were clean without the virus and I should not infect them”.

It pained me greatly, but I plucked enough courage to ignore this,” she told a quiet hall last Wednesday evening at the launch of the stigma and discrimination brochure by the District Multi - Sectoral AIDS Committee (DMSAC). When she made the pronouncement, all eyes were now set on her.

“I take it that I was lucky to have known my status which I fully accepted, as there was nothing else I could do.” She was shocked when she was told to vacate the place where she had lived with her grandmother for a long time, just because of her status. She saw the whole world collapsing on her.

“I told myself I should be strong enough to withstand the mounting pressure. I had won the first battle and could not lose this one. I knew a Good Samaritan somewhere will come to my rescue,” she declared cheerfully.

“As my grandma told me to vacate her place, I just told myself that God was watching me and would come up with a plan,” said the born again Banda - a resident of Kgaphamadi. Soon members of the Assemblies of God Church came to her rescue.

“I had informed them about my status and even the church pastors had accepted it.” She enrolled in the ARV programme after a delay because there was no one to sign the forms at the Infectious Disease Care Clinic (IDCC).

“There was no one to sign the adherence forms for me as my grandmother and my only hope was not on my side. A certain white woman called Susanne of TCM signed the forms for me to start on the life saving drugs. My experience pained them also, but they accepted it as part of life anyway.” As she made dashing and energetic moves on the podium, she thanked the ARVs and the positive attitudes of certain around her for giving her a new hope.

She had accepted her rejection as one of the things to live with. “You can’t force anyone to be on
your side at the time of need.” Her grandmother had accused her of contracting HIV/AIDS
because of promiscuity.

“I nearly died one Friday afternoon when I read from a local newspaper that had splashed the story of my sickness without my consent. My grandmother had just gone to this newspaper and they found it fit to say all those bad things about my status,” she said and added that it now dawned on her that she should get stronger and stronger.

“As we speak now, some of my grandmother’s children who tormented and discriminated me, because of my status are also infected.”

She remembers that her grandmother picked her clothes with a stick in fear that she would contract the virus. She said she was a complete outcast just like the Biblical lepers. “When all this was done to me, I told myself that one day, I would recover and live this life again.

Those who saw me then, do not accept that it is me,” she said shaking her body a bit.

Today, her grandmother sends people to her to apologise for her “bad treatment”. Banda says she would not take apologies from messengers.

“Whether she rejected me, I still consider her as my mother. I am still looking forward to a day we will meet cordially and inform her that I am not going to judge her harshly for what she did to me in the past. It is all behind me now.”

She is proud that she is today living a life with better direction, as she knows her status. She urged other people especially the youth to test and make viable future plans.

Source: Mmegi News at http://www.mmegi.bw/2005/August/Friday19/7818765651480.html

India: Patients show how to stay positive despite HIV

2005-08-24T09:52:00.000+07:00

by Anand ST Das, Chandigarh Newsline, August 20, 2005

Chandigarh--When one sees Brajesh Dubey of Jaipur delivering an energetic lecture on the plights of India’s HIV-positive people and punctuating his lecture with wit and humour, it is hard to believe he is HIV-positive himself.

This 35-year-old man, now a volunteer working for HIV-positive people in Rajasthan, says the ‘‘useless feeling of stigma’’ has done more damage to India’s HIV-positive people and AIDS patients than the lack of facilities for diagnosis and proper treatment.

Dubey is an example of a growing population of HIV-positive people who are no longer afraid to come out of their shells. Unlike about a year ago, they are now eager to get together for their cause and make the government machinery respond to their needs of proper treatment and the society to see them as equals.

‘‘The government needs to translate its promises into action. We aim at ensuring this,’’ said Chennai-based David Daisy, who is HIV-positive and works with an NGO for HIV-positive people. Like Dubey, she was in city to participate in a two-day national conference of People Living With HIV-AIDS (PLWHA), organised by NGOs- Voluntary Health Association of Punjab (VHAP) and Human Rights Law Network (HRLN).

Naresh Yadav, who heads a network of HIV-AIDS people in Uttar Pradesh, said: ‘‘HIV-AIDS patients are fast learning to come out of their closets’’.

VHAP executive director Manmohan Sharma said: ‘‘Growing awareness among the people is bringing about this welcome change. Such rising levels of awareness will soon make combatting the scourge of HIV-AIDS easier.’’

VHAP, which works on socio-economic development issues, is now trying to form networks of PLWHA in northern states. Although such networks have become vibrant groups in southern states, Sharma said they hardly exist in north India.

PLWHA leaders had discussions on the prevalent system of anti-retroval therapy (ARV) and how to make this system ‘‘truly friendly’’. Officials from the AIDS Control Society also took part in the conference.

Chandigarh State AIDS Control Society project director Dr Sonia Trikha urged the participants to form networks for follow-up treatment of HIV-AIDS patients.

HRLN director and noted Supreme Court lawyer Colin Gonsalves said: ‘‘The government’s machinery still lacks in its response. However, joint efforts by the PLWHA networks and agencies like NACO and state AIDS control bodies would improve the situation’’.

Source: Chandigarh Newsline

Fighting HIV hysteria in Ukraine

2005-08-15T18:47:00.000+07:00

Kyiv Post, 10 August 2005

AIDS experts in Ukraine often draw a distinction between the official number of people diagnosed with HIV and the estimated true number of people living with HIV. Experts at UNAIDS and other organizations estimate that the true number of people with HIV/AIDS is 1.4 percent of the adult population, which is at least ten times the official number. This means that close to 90 percent of people with HIV have not been tested, are not registered with the state AIDS centers and are not receiving the proper counseling and care. Many of these people may not yet know that they are HIV positive.

Why is such a large proportion of the people living with HIV/AIDS completely off the official radar? One reason is stigma. The stigma associated with HIV/AIDS is even more dangerous than the disease itself. Stigma keeps people living with HIV/AIDS from getting the treatment, care and support that they need to live normal and healthy lives. The fear of being identified as being HIV positive also prevents people with HIV from getting tested, receiving counseling and learning how to avoid transmitting it to others.

Where does this stigma come from? It may originate in the fear or distrust of certain social groups. Injecting drug users, sex workers, men who have sex with men and other groups that are currently more vulnerable to HIV are already stigmatized. Associating HIV with these groups may allow people to legitimize their fear of these groups. In a research study conducted by AIDS Foundation East-West and the Ukrainian Network of People Living with HIV/AIDS, both before and after a recent media campaign to fight such stigma and discrimination, more than 70 percent said that an HIV-positive person is at least partly to blame for becoming infected.

The stigma may also come from lack of education about the nature of HIV. A majority of Ukrainians aged 15-50 can correctly identify the ways HIV is transmitted between people. The results also show that the media campaign was able to reinforce these majorities. The percentage of respondents who saw the campaign and said they had no fear of people with HIV rose from 45 percent before the campaign to 54 percent afterwards. Yet when they were asked about concrete situations, the results were more troubling. A strong majority of respondents said there was at least some risk from eating in a restaurant with an HIV-positive waiter (62 percent before the campaign and 52 percent after). Just under half (48 percent before the campaign and 40 percent after) said there was at least some risk from working in an office with an HIV-positive colleague.

When surveyors asked before the campaign how they would react if they found out a child living with HIV was in the same school as their child, 31 percent said they would take steps to isolate their child from the HIV-positive classmate. This figure dropped to 19 percent for those who saw the campaign, but it needs to fall further.

The results have shown that educational campaigns can have a positive impact, but they also show that more work needs to be done. In addition to more of these types of campaigns and targeted educational activities, there needs to be more community mobilization, not just of people living with HIV/AIDS, but of drug users, gay men, sex workers and others that are currently the most stigmatized and more vulnerable to the epidemic. At the same time,

Ukrainian lawmakers and officials should ensure that people with HIV/AIDS are protected by the law and not discriminated against. This includes ensuring the confidentiality of a person's HIV status.

Journalists can help too. Recent news reports this summer of HIV-laced syringes on Ukraine's beaches that overstate the risks have only helped to fuel a mass HIV hysteria. The chance of becoming infected with HIV from a prick by a discarded syringe is generally accepted to be less than 0.3 percent. While this may be a legitimate news story, journalists should be careful to put the risks in perspective and not create fear for the sake of catchy headlines.

Journalists can also avoid using degrading terms and labels like "HIV-infected" or "victims" when talking about people living with HIV/AIDS. There is even a tendency among people and institutions involved in the fight against HIV/AIDS to dehumanize people living with HIV/AIDS into various acronyms, such as "PLWHA."

Everyone has a role to play in addressing HIV/AIDS in Ukraine and throughout the world. The first step for many people is to learn the real risks about HIV and not rely on rumors. Then they should discuss it with their family, friends and colleagues. In order to seriously address the HIV/AIDS epidemic in Ukraine, the epidemic of fear and HIV hysteria must first be eradicated.

David Veazey is a senior advisor at AIDS Foundation East-West (AFEW).

Source: Sitgma-AIDS eForum

South Africa: Men Falling Through the Cracks

2005-07-26T09:12:00.000+07:00

UN Integrated Regional Information Networks, July 25, 2005

Most women can testify to the old adage that a good man is hard to find. But finding men who are willing to undergo voluntary HIV counselling and testing (VCT), and support their HIV-positive pregnant partners in the prevention of mother-to-child transmission, is even harder.

According to researchers, men account for only 21 percent of all clients receiving VCT in South Africa.

In the old Nurses Home building at Chris Hani Baragwanath Hospital in the country's largest township, Soweto, near Johannesburg, most of the patients at the Perinatal HIV Research Unit (PHRU) or its psychosocial support services, HIVSA, are women.

As Dr Francois Venter of the Reproductive Health Research Unit (RHRU) put it, it was "bloody easy to find women": they were more likely to access health care services and get tested, particularly during pregnancy; or clinics, especially antenatal clinics, where most of the HIV testing takes place, because these healthcare facilities were perceived as unfriendly to men.

It was difficult enough to find men who would agree to be tested, but getting hold of a supportive man to accompany his partner on her antenatal visits during pregnancy or agree to be tested as a couple, was almost impossible.

A community-based survey conducted in Soweto by the Population Council found that although 62 percent of males interviewed had encouraged their partners to go to antenatal clinics during their last pregnancy, only 37 percent accompanied them during these visits. "An even lower proportion of men" accessed VCT with their partner as a couple, the Population Council's Prudence Ditlopo pointed out.

When men do play a role in VCT, both parties benefit: HIV-positive women are more likely to receive Nevirapine during follow-up visits, avoid breastfeeding their infant, and use condoms; men are more likely to access antiretroviral treatment sooner.

So why aren't they doing it? In trying to come to grips with men's low use of VCT and participation in preventing mother-to-child transmission of the virus, the University of Washington's Andrew Levack spent time in Soweto interviewing men and women for his research.

Fear of disclosure and stigma remain the biggest barriers, Levack found. In Soweto, VCT has become associated with death, as many people do not take the test until they show the symptoms of AIDS and are very ill, but men were more scared of AIDS than of dying, he noted.

"Because we fight the wars, I wouldn't say we are afraid to die - I would say we are scared to die slow; we prefer to die fast," said one male respondent.

Men were even more reluctant to be tested when they had multiple sexual partners or indulged in high-risk sexual behaviour. "Those who need it most are not getting tested," Levack warned.

Another common reason was that they just did not see any value in knowing their status, which was often seen as a burden: they would have make lifestyle changes, stop having sex, drinking and smoking.

Making free ARVs available was often not enough motivation for men to get tested, as most people knew that the life-prolonging medication was not a cure for HIV/AIDS.

About 6.5 million people are living with the virus in South Africa and it was surprising that some of the men who participated in the study did not feel vulnerable to HIV infection, Levack commented.

"The thing is, I do not believe it could happen to me - the other day I was listening to the radio; every time they talk about AIDS I would get bored and change the channel ... I just don't believe it could happen to me," remarked a participant from Mdeni, an area in Soweto.

The most surprising finding was that men were "proxy testing" by using their partner's HIV status as an indicator of their own; women reinforced this idea, believing that they should be the first to test, for their partner.

Levack recommended the launch of communitywide campaigns targeting men with messages such as, "my status is not my partner's status".

According to study respondents, the role of men in society was another factor: men were not socialised to take care of their health and seek services from clinics, which are traditionally seen as the woman's domain.

Participants also observed that South African men had been taught to hide their emotions and not ask for help, making it hard for them to get social support when living with HIV.

But Levack stressed that men were being tested, usually because they had been influenced by partners and friends, were religious, or knew someone living with HIV; in some cases, they got tested simply for "peace of mind".

He called for the expansion of the number of male-specific VCT service sites to encourage more men to come forward.

Nevertheless, Bernard Nhlapo, VCT Coordinator of the Imbizo Men's Health Project, run by HIVSA, cautioned that male-specific clinics would not solve the problem.

Imbizo's two 'drop-in' centres in Kliptown and Diepkloof offered advice on health matters, HIV testing and counselling and other services in an all-male milieu, but stigma was still turning men away. When the first two centres opened this year, "it was so depressing sitting there for the whole day with no-one coming", and although the clinics were slowly gaining clients, "the going is still slow".

Dean Peacock, programme manager of the Men as Partners (MAP) Programme in South Africa, suggested that healthcare workers "work outside the four walls of the clinic", and noted, "We are not calling for the rearranging of the health system ... just low-cost things like messages, pamphlets, posters, targeted at men."

[ This report does not necessarily reflect the views of the United Nations ]

Source: AllAfrica.com

South Africa – Challenging Stigma By Living Positively With HIV

2005-07-21T16:01:00.000+07:00

IRIN News, 21st June 2005

JOHANNESBURG - In the face of widespread stigma around HIV/AIDS, few people have the courage to go public about their status, but one such person is Mampho Leoma, 28, a mother of two from Mapetla, in the Johannesburg township of Soweto.

Leoma recalled the day she found out she was HIV-positive: "It was the 26th of January last year; I was four months pregnant ... It was very sad - I didn't expect the result. At the time I was not going with anyone else but my husband, and I didn't think he was going out with other girls either."

Leoma rushed to tell a friend, who calmed her down. "She said everything will be alright; she told me to tell my husband. I waited for him to come back from work and I told him. He said, 'No problem - we will live with it'."

However, Leoma's partner soon took to drinking heavily, became abusive and started staying out late; she suspected him of sleeping with other women.

While her own family in neighbouring Lesotho was supportive, her father-in-law was not. "We were living with him in his house. I told him about my status and then he wasn't too worried. He said, 'The way you look, you are so healthy - if you get sick, then we'll see."

But when she returned from a visit to Lesotho his stance had changed. "He said we must go and look for another place. I don't know why he said that because he is too old to stay alone - we are the only ones who can stay with him, as his other children stay far away."

Leoma's husband still lives in denial, refusing to be tested or seek medical treatment. "He's still healthy; he's not getting sick, but at night when he sleeps the sheets are wet, and he's also coughing a lot but he doesn't want to accept [it]. He drinks too much and when he is drunk he talks about it - he says both of us and our children are going to die."

Although the children, an eight-month-old daughter and a nine-year-old boy, are both HIV-negative, her husband does not believe this.

Leoma shows the same calm resilience in the face of the many other challenges she faces. She insists on using condoms with her husband for fear of reinfection, although this is a source of constant conflict in their relationship.

"Since I've told him that I will use condoms for the rest of my life, he doesn't force me to [have sex] without them, but when we are fighting and I ask if there are other women, he says, 'Yes - you don't want to sleep with me without condoms; I am not satisfied with condoms, I will sleep with the others.'"

Despite her difficult home circumstances, Leoma has taken on the mantle of AIDS activist and is intent on spreading the word that one can live 'positively' with HIV.

"Stigma is there ... If you're sitting with the other ladies, they will comment: 'Hey, do you see that one? She looks like she's HIV-positive.' But I tell them that living with HIV is not a problem; there is treatment."

Leoma said she had gained strength from attending support groups for HIV-positive mothers run by HIVSA, the psychosocial arm of the Perinatal HIV Research Unit, based at Chris Hani Baragwanath Hospital in Soweto.

"Because of [the] support group, I feel that I can teach other people about HIV - I am ready to confront people to say that living with HIV is not a problem. Now I am ready to talk about it to everyone.

"I think we have to go from house to house to teach them about HIV/AIDS - especially the boys and men. The people who have to go there must be the ones who are HIV-positive, but we must take our results. Otherwise, if you go there, they'll say, 'She's lying - she's not HIV-positive, see how healthy she is.' We need to explain why we are still living healthily, so that they will know everything about HIV."

Online at: http://allafrica.com/stories/200506210126.html

Stigma keeps many from taking HIV test in USA

2005-07-11T18:25:00.000+07:00

by Luella Brien 28th June 2005

Stigma. For some people, that six-letter word can mean the difference between life and death.

The stigma of HIV and AIDS has kept hundreds of thousands of people from getting tested for the disease. The U.S. Centers for Disease Control estimates that 180,000 to 280,000 people don't know they are HIV-positive, most because they refuse to take the diagnostic test.

‘The stigma is still huge, and more so in small towns,’ said Kathy Mackey of the Ryan White Program at Partnership Health Center in Missoula. ‘It's a huge issue.’ Mackey's program works with 264 patients statewide, a little more than half of them in western Montana, and was one of the sponsors of Monday's National AIDS Testing Day - an effort to convince more people to get AIDS tests.

As part of that effort, Mackey and others asked several AIDS patients to talk with the Missoulian about their disease. The earliest known case of HIV was from a blood sample collected in 1959 from a man in Kinshasa, in the Democratic Republic of Congo. No one knows how that man was infected, but genetic analysis of the blood sample suggested that HIV may have stemmed from a single virus in the late 1940s or early 1950s.

Nearly 60 years after the disease originated, it still carries a stigma, said Marjorie Dula, Missoula AIDS Council executive director. ‘The more educated people are, especially about transmission routes, the less likely they are to be stigmatized,’ she said.

Fifty-six percent of Montanans living with AIDS are gay; 46 percent of AIDS patients nationwide are gay, according to the CDC. Nationwide, 25 percent of HIV/AIDS cases are the result of intravenous drug use; the state of Montana links 12 percent of its AIDS cases to IV drug use.

Montana is a low-incidence state, with only 365 confirmed cases of HIV/AIDS. The problem is, with numbers that low, many people believe they can't get the disease, health care workers said.

‘In fact, the fastest growing group to be infected with HIV and AIDS is women,’ Dula said. Since most people associate having HIV/AIDS with being gay or a drug addict, people who are neither don't get tested, said Mackey.

That's exactly what Steve Davidson thought when he went in for an AIDS test in 1991.
‘From what I read, I thought since I'm not gay and not using drugs anymore, I'm safe,’ said Davidson, of Kalispell. ‘The nurse called and said, 'You're positive,' and she hung up.’

Davidson said the HIV diagnosis didn't change his life much. ‘It's like losing my hair. I mean I wish I had hair, but I've got to move on,’ he said. Every morning, Davidson wakes up and takes his AIDS medication. Then the 49-year-old immediately goes back to bed for a few hours. ‘Going back to bed helps me get through some of the medication's side effects,’ he said.

And the side effects of AIDS medications are brutal - nausea, diarrhea and extreme fatigue, but for Davidson they are worth it. Anything is better than dying. ‘My diagnosis was anything but a death sentence,’ he said.

Davidson, a former intravenous drug user, would do whatever he could to get high. He was a high-risk individual. Davidson was lucky. He didn't acquire the disease while he was shooting up with other addicts. And he stopped using drugs after being picked up by police for shoplifting and passing bad checks in 1986.

‘That gave me the opportunity to change direction,’ he said. After a long struggle, Davidson sobered up. Then in 1991, two years clean, he learned that he was living with HIV, the result of unprotected sex with an infected woman.

He moved to Montana from Texas in 1997, after spending his vacations in western Montana for three years running. ‘I gave everything away and moved up here,’ he said. He started medication in 1998, but stopped after less than a year because of the toll it was taking on his body.

In 2002, Davidson's white blood cell count was at AIDS levels, and he began taking an unorthodox version of the AIDS drug cocktail, which seems to be working well.

‘Most of the meds shut down my body,’ he said. ‘I've been trying all the combos, and the one that I'm on isn't really recommended.’ Davidson has diabetes and neuropathy, a painful numbness in his legs. His medications make him fatigued and lethargic, and he suffers from nausea. His disease causes his navel to bleed and he has random earaches. He also has a skin rash.

Through all of it, Davidson manages to stay upbeat. He plans to make a documentary about living with AIDS in Montana. ‘I want to give people with AIDS hope. I want it to be something uplifting,’ he said. He is also campaigning for a seat on the Kalispell City Council.

‘It would be nice to be elected and to serve the community,’ Davidson said. ‘I want to speak for disabled people and for seniors. I don't know if my AIDS status will be a help or a hindrance, but it will give a new voice to the City Council. Most importantly, I want people to know that Montana is prone to an epidemic,’ he said. ‘All it takes is for one person to infect a group of people and it can hit the heterosexual community hard.’

It takes only one sexual encounter, said Robert Blackwell, a Missoula man living with the disease. Blackwell, 51, loves to cook, but he can't do it for a living anymore. He was diagnosed with AIDS in 2002. He tested negative for the virus in 1997, but five years later went to the hospital with swollen hands and was admitted with pneumonia.

‘The doctors wanted to test me for HIV because of the type of pneumonia it was,’ he said. Their suspicions were correct. A year later, Blackwell moved to Missoula and is been a strong community voice ever since. Blackwell is pretty sure he knows who infected him, and he is sure he hasn't passed the disease on to anyone else. But AIDS has affected his life dramatically. He can no longer enjoy the things he used to, like cooking for a living. He wanted to move to Montana to start his own restaurant, but after his diagnosis he gave up on the idea.

‘A cook gets cut. I just couldn't risk it,’ he said. Blackwell sits on a statewide advisory council in Helena that works with AIDS prevention and education. He knows there is a stigma associated with AIDS but is open about his disease.

He wants Montanans to know what's out there. He wants people to know he had to change his entire life because of one sexual encounter.

Blackwell wants people to understand that he lives his entire life focused on his disease. He wants people to know that it can happen to a straight man in a low-risk group. ‘People think that because Montana is a low-risk state they are safe,’ he said, ‘but I've got news for them. It can happen.’

‘It's made a big change in my life. I have no problem speaking out about it so people will be more aware,’ Blackwell said. ‘You have to live your life around the disease instead of living your life the way you want to.’ Blackwell plans to take a 17-month intensive writing course online so he can begin writing his memoirs.

He works with the Missoula AIDS Council to help reduce the stigma associated with HIV/AIDS. He speaks at the University of Montana and hopes to begin speaking in local high schools. ‘When students see a real-life person living with this disease, it creates compassion and the realization that it is in Montana,’ Dula said. ‘We had volunteers speak to over 1,500 high school and college
students.’

Blackwell wants to help implement a mentoring program for newly diagnosed people. ‘If I can help someone get through the trauma of diagnosis, then that's a positive for me,’ he said.

Source: Stigma- AIDS eForum
Online at: http://www.missoulian.com/articles/2005/06/28/news/local/news03.txt

Stigma associated with AIDS very strong in Japan

2005-07-11T18:22:00.000+07:00

July 2005 News-Medical.Net

Although Japan may well be one of the world's most affluent, well-educated and developed nations, as yet it is also the only such country where AIDS cases have not dropped dramatically.

According to AIDS activists at an international conference about AIDS in the Asia-Pacific, held in the western city of Kobe, prejudice against the disease and its sufferers is partly to blame.

The Japanese government as yet has not made AIDS a major political cause, which has been the case in other Asian nations, such as Thailand, where an AIDS policy is carried out by several ministries, rather than being centrally coordinated.

At present AIDS education in Japanese schools is minimal and is treated solely as a medical problem.

This attitude reflects widespread taboos about openly discussing sex and this is in direct contrast to Japan's booming pornography industry.

There were 1,165 new HIV/AIDS cases reported in 2004 in Japan, which is the highest annual figure yet, and more than a tenth of all reported cases have been since 1985, and experts warn that the figure could climb to 50,000 by 2010.

Official apathy is blamed for much of Japan's situation.

Eleven years ago, just after a young Japanese woman had just given birth to her first baby, her husband was diagnosed with AIDS, and she found out she was HIV-positive.

Her diagnosis and that of her husband, who died six months later, were a complete shock.

Testing methods at that time meant it was 18 months before she found out whether her daughter, whom she had breast-fed for nearly two months, had been infected as well.

Fortunately the child was free of the virus.

Today the stigma against people like her in Japan is such that she will not reveal her name, her age, or allow her picture to be taken, because her job, her daughter’s school life and her relationship with her neighbours would be jeopardised.

Many fear what might happen if their HIV status was known and that prevents people from being tested, much less treated, which means many may be HIV-positive without knowing it.

Despite living in the world's second-largest economy, with access to life-saving drugs, many feel their existence is at best grudgingly accepted by the very government whose health care system helps keep them alive.

In Japan apparently the majority of the population believes AIDS to be a disease afflicting only foreigners, sex workers, gays, and people who indulge in risky sexual practices.

At hospitals people are required to give their names, and while public health centres offer anonymous testing, their hours are extremely limited and results can take a week.

To remain healthy, the woman takes several drugs each day at a cost of 50,000 yen ($450) a month, which is partly covered by government insurance.

All her expenses could be covered by a government programme but that would mean revealing her HIV status to officials in the small central Japanese town where she lives.

The open-ness of her Asian counterparts about their HIV status at the AIDS conference had inspired her to speak out about her situation for the first time.

Online at: www.news-medical.net/?id=11497

Source: Stigma-AIDS eForum

NIGER: HIV/AIDS drugs available but no takers

2005-07-03T18:14:00.000+07:00

NIAMEY, 1 July (IRIN) - The word for HIV-AIDS in Hausa, the language most widely spoken in Niger, means "Welcome to the grave".

This landlocked West African nation is one of the poorest countries in the world, but international donors have made available ample funds to tackle AIDS.

However activists say that the stigma surrounding AIDS and the lack of a clear government policy on extending treatment to the interior mean there are few takers for the testing, counselling and treatment services recently made available.

"We have funds, testing is possible, antiretroviral drugs (ARVs) are available, but people simply don't turn up at the treatment centres," said Abdoulaye Bagnou, a doctor who works as HIV/AIDS advisor to the prime minister's office.

All admit that the social stigma attached to AIDS in this staunchly Muslim and socially conservative country is a major obstacle.

But AIDS activists also blame the government for failing to implement a proper nationwide treatment strategy.

"There is no testing network, no strategy, no nationwide structure," said one humanitarian worker. "Before decentralising treatment you need to locate the patients. If people are not being treated it's because we don't know who or where they are."

The government hopes to put 4,000 people on free life-prolonging ARV treatment, but since it began to supply ARV drugs free of charge in January this year, only 350 people have come forward to receive the medication.

They are grateful for the fact that effective treatment is finally available for the more than 100,000 people living with the HIV virus in Niger.

"I used to have to go to Ouagadougou (capital of Burkina Faso, 527 km from Niamey) to buy ARVs," said Issoufou Aboubacar, one of 228 patients registered to receive ARV drugs at a Red Cross outpatient treatment centre for people living with AIDS in Niamey.

But most of the HIV positive people in Niger are still too scared to come forward to seek testing and treatment.

People don't take tests because of the stigma which is linked to religion, rising fundamentalism and the social status of women," said the head of one non-governmental organisation who asked not to be identified.

Too ashamed to take a test

On the funding front, the picture is rosy.

The World Bank has pledged US $25 million to Niger for 2003-2008 as part of its multi-sectorial action plan to fight AIDS.

And the Global Fund against AIDS, Tuberculosis and Malaria agreed in August 2004 to provide US $12 million over two years. Government officials attribute the lack of enthusiasm for AIDS treatment largely to the fear of taking the test.

"AIDS is still a shameful sickness in Niger," Bagnou said. Many people living with HIV/AIDS ignored the illness until it was too late, the government adviser said.

"Patients arrive (in hospitals) when they're terminally ill and are not taken into account in the statistics," he noted.

Patchy testing and the reluctance of people living with AIDS to seek hospital treatment have led to a lack of reliable statistics on the true level of HIV infection among Niger's 12 million people, most of whom are subsistence farmers and nomadic herdsmen.

A 2002 sentinel survey of people tested voluntarily for AIDS put the HIV prevalence rate at 0.87 percent

But in late 2003, UNAIDS estimated that 1.2 percent of Niger's population - 144,000 people - were living with the virus.

That figure will be updated by a new demographic and health survey to be launched later this year.

Semi-arid Niger, which is 80 percent Muslim, is ranked by the UN Human Development Index as the world's second poorest nation. Its women give birth to an average of eight babies in their lifetime - more than anywhere else.

According to Niger's 2002 sentinel survey, commercial sex workers had an average 25 percent infection rate. However, this soared to 50 percent in Dirkou, an oasis town in the desert north on the main trucking route to Libya. Soldiers registered 3.8 percent, truckers 1.7 percent and teachers 1.4.

Few trained doctors and grassroots groups

Until recently, Niger's facilities for treating AIDS were concentrated in the capital. The government only recently began to decentralise testing and treatment to other parts of this vast country, which is three-quarters desert.

Four of Niger's five ARV prescription centres are located in Niamey. The fifth in Galmi, 500 km to the east, near the border with Nigeria, only opened a few months ago.

Bagnou acknowledged that only 30 or so doctors were trained to prescribe ARV drugs and that almost all of them worked in Niamey.

A dearth of grassroots support groups able to back up anti-AIDS work is also holding up efforts to help people living with the virus.

Louis Pizzaro, the local head of the French AIDS organisation Solthis, noted that at Tillabery, a large town on the Niger river, 130 km northwest of Niamey, AIDS orphans had had to be placed in the care of a local association working to stamp out juvenile delinquency because there was no local AIDS activist group to look after them.

However, the number of people coming forward for testing and treatment is rising slowly.

Moussa Ide who heads the Red Cross outpatient treatment centre in Niamey, said 2,000 people had come forward for testing so far this year and 14 percent of them had tested HIV positive.

Ide said the day centre was designed to treat 800 regular AIDS patients, but by the end of this year it was likely to have 1,000 on its books

"People are convinced that the care at centre is effective," he said. "The proof is when someone who weighed 80 kilos before falling ill, but weighed only 35 kilos the first time he came to the clinic, then regains his original weight."

Sani, who is on the ARV scheme run by the Red Cross centre, said he felt like a new man.

"People don't even realise I am ill," he said.

"In this country people are automatically accused of having AIDS if they start to lose weight, and then they just fade away and die an early death because of the stigma. ARVs are there to help us and hide our shame."

Source: IRIN News

Yes, we have HIV too, say four clergymen

2005-06-27T06:42:00.000+07:00

By Tony Kago Daily Nation, Nairobi, Kenya 22nd June 2005

Nairobi--The Christian and Muslim clergy from various African countries cited fear of stigma and discrimination as the main obstacles to the fight against the Aids pandemic. Anglican lay leader Gibson Mwangangi Mwadime (Kenya), pastor Amin Sandewa (Tanzania), Canon Gideon Byamugisha(Uganda) and Catholic priest Jape Heath of South Africa revealed their status at a forum organised by the Kenya Network of Religious Leaders Living with or Personally Affected by HIV/Aids at a Nairobi hotel.

They won accolades from Kenya's Anglican Archbishop, the Most Rev Benjamin Nzimbi, and Information and Communications minister Raphael Tuju for their boldness. Said archbishop Nzimbi: "Hearing the testimony today, I could not help shedding tears. I feel like an accused in a court. Coming out to fight stigma is a big and bold step."

He apologised on behalf of church leaders for not confronting stigma head-on. "We want to apologise for the things which we have done and for leaving out things which we ought to have done," he said.

The archbishop asked the Government to make drugs available and affordable to HIV carriers.

Mr Tuju said: "We have come a long way and to be sitting in this room with religious leaders living and affected by HIV/Aids. This is evidence that change is on the way. It will continue and it is inevitable."

Earlier, Mr Mwadime, who is based in the Taveta Anglican diocese, said he had had HIV/Aids for more than 20 years and had lost his wife and two children to the disease. He had been infected by his wife soon after she had undergone a blood transfusion during an operation.

Pastor Sandewa said he had been discriminated against by his church soon after he was infected in 1999. Canon Byamugisha, who has been HIV-positive for 18 years, said: "Many of Africa's deaths are preventable, postponable and reversible if only we can defeat the stigma, shame, discrimination, denial and inaction."

Credited with being among the first religious leaders to declare their status, Canon Byamugisha said: "We must defeat stigma. It frustrates God's world vision for mankind."

For his part, Father Heath, chairman of the African Network of Religious leaders living with or personally affected by HIV/Aids, said: "Though HIV/Aids is bigger than the church, it is not bigger than God."

Ms Rukia Ahmed of Moyale said most Muslims were "still in denial", adding: "Many people are being buried every day. Yet our people say they died because of malaria. We should come out and speak out."

Ms Rukia, a mother of three, told the Nation that, contrary to reports, North Eastern Kenyans were also infected and affected by the epidemic.

USAid's senior regional HIV/Aids adviser, Mr Warren Buckingham, who has had HIV/ Aids for 27 years, decried the lack of vision among religious leaders. "Where vision has been articulated by religious leaders, too much of it and for too long has been a vision of judgement and damnation, of punishment and persecution."

Calling for a new vision where stigma, denial, discrimination, inaction and "misaction" are non-existent, Mr Buckingham asked religious leaders to play their role as witnesses of hope and forces for change.

He asked the Government to speed up the drugs tendering process, saying the delay was costing lives. Mr Buckingham welcomed Mr Tuju's assurance that the Government had waived duty on anti-retroviral drugs.

Source: Procaare eForum, join-procaare@eforums.healthdev.org

Fear keeping infected from getting HIV tested

2005-06-27T06:40:00.000+07:00

by Cyndy Cole, Arizona Sun Times, 26 June 205

Arizona, USA- For every person in Coconino County who knows they're HIV-positive, there's one that doesn't but might suspect as much, health officials say.
A portion of teenage girls and young women fear upsetting their lovers by demanding men use condoms, so they get on the birth control pill and skip the latex.

Some Native American patients diagnosed as HIV-positive avoid hospitals for treatment as a result of cultural stigma, until serious illness or AIDS sets in.

People who have unsafe sex with multiple partners have started thinking the AIDS pandemic, and their potential health problems, can be solved with a pill.

Misinformation and lack of education about the virus is common across northern Arizona, Flagstaff Medical Center registered nurse Adrienne Hyman says.

On Monday, the county will offer free, confidential HIV testing and counseling at its main office as part of a national campaign to get people tested. It takes 20 minutes and the prick of a finger for results.

HIV or the AIDS virus it causes affects more than 10,000 people statewide. It's aquired through blood, contaminated syringes or needles, sex with someone infected or transmitted from a pregnant woman to her fetus.

Coconino County had 118 people diagnosed as HIV-positive or living with AIDS as of two years ago, according to state statistics.

That's one in 1,030 residents affected, half as many as the statewide average but an increase from the 41 cases diagnosed in the five years before.

Oddly enough, those most likely to be HIV-postive are least likely to show up for test results, health workers said.

"There're a lot of people who don't want to know their status, who think they are (HIV-positive), but don't want to know," Hyman said.

Half who get tested are at high risk for the virus, due to risks like unprotected sex or intraveneous drug use with dirty needles, according to confidential surveys.

The other half are just verifying their health, Coconino County's HIV testing and program coordinator Ryan O'Donnell said.

FMC physician Mark Lacy, who specializes in infectious diseases, opened a clinic in the hospital this spring just for treating HIV-positive patients from across northern Arizona. Lacy and Hyman help HIV-positive patients find medicine, financial aid and other help, along with medical treatment.

Before that, the closest such specialist was in Phoenix or Gallup, N.M.

He and Hyman see about 75 patients from all over northern Arizona as part of what they call the Shandiin Project and teach educators how to talk about health and sex.

Nearly half of their patients are women, a turnabout from countywide statistics that show three out of four HIV-positive or AIDS-infected people are men.

The county health department has gotten more creative about safe-sex and health education in the past year, following Tucson in recruiting about a dozen educators to take stories about resolving risky behavior to gay and lesbian friends.

Flagstaff doesn't have a gay hangout like some metropolitan areas, so this is the next best way to get the message out, Community Promise Program Coordinator Cheryl Has No Horse said.

About half of those diagnosed as infected in the most recent county statistics were gay or bisexual men, though that trend is changing nationwide.

Source: Arizona Daily Sun at http://www.azdailysun.com/non_sec/nav_includes/story.cfm?storyID=110867

Giving women reason to hope

2005-06-24T23:51:00.000+07:00

By Bettijane Levine LA Times Staff Writer

June, 24, 2005, NEW YORK — Babalwa Mbono wined, dined and traipsed around Manhattan as if she were accustomed to the kinds of places she went: a party in a millionaire's postmodern loft, the gleaming corporate headquarters of Johnson & Johnson, the well-appointed apartment she stayed in during her trip.

In truth, she had never seen anything like them.Her home in South Africa is a cardboard hut. She uses a communal outhouse, gets water from the streets or the town tap. Her village of Kyalitsha, just outside Cape Town, is ravaged by AIDS, as is most of her homeland. Her two young sons are among the 1 million babies born in South Africa each year to HIV-positive women, often contracting the virus at birth.But Mbono is not the tragic figure one might expect from that thumbnail sketch.

Articulate, intelligent, with a quick sense of humor, she recently traveled here on a fundraising mission led by the man she believes saved her life.Mitch Besser, an obstetrician and gynecologist from San Diego, moved to Cape Town 4 1/2 years ago to try to help curb the raging AIDS epidemic that he says is "creating a nation of orphans" and eradicating a generation of mothers. He quickly found that medical expertise was useless unless women like Mbono were willing to take advantage of it. But they were terrified of even taking the HIV test, he says.

"The big issue is stigma," Besser explains. "Just taking the HIV test is a sign to your partner, your family, the community, that you might be at risk. To be perceived that way means you will be ostracized and abandoned by family and friends." Mbono amplifies: "If you have HIV," she says, "no one wants to be with you, talk with you, let you into their house. Even the boyfriend or husband who gave you the illness may push you out, with no way to get food, no place to live."These psychological and social pressures are almost as daunting as the virus itself, both say.

To help eliminate misinformation in a country with so little public health education, so few doctors and nurses, Besser's idea was to train the women themselves — as educators, motivators, informed supporters of one another. In his Mothers' Programmes, pregnant HIV-positive women are taught methods to prevent transmission of the virus from mother to child, before and after birth. They learn about medications, nutrition, formula feeding — and how to combat societal pressures. Once their babies are born, they become mentors to the next group of newly diagnosed pregnant women.

The program started at one Cape Town maternity clinic three years ago and has since expanded to 64 sites across the country. Besser plans to extend it into Botswana, Ethiopia and Mozambique within the next three months, he says. Most South African women are not even offered an HIV test until they become pregnant and go to a maternity clinic for an exam, Mbono says. By then the stakes are even higher: "If they test positive, they consider it a death sentence for them and their unborn child." Most believe their only option would be to "have an abortion or kill themselves," she says.

She has seen it all firsthand. Her sister committed suicide after being diagnosed positive at 18. "She just couldn't take the stress, couldn't take the virus within herself," Mbono says. Although the HIV virus is an equal-opportunity attacker, to Mbono it seems it is women who suffer the most humiliation and indignity.

Now 30, she became pregnant with her second child three years ago. She took the test, quite certain she was healthy. She remembers exactly what happened next."The counselor tell me, 'Babalwa, you are positive.' I was so shocked. I just closed my eyes. I said, 'Tell me again.' " The counselor told her two more times, even showed her the form that read "positive" in heavy black ink.

"I can't explain how I was feeling, so angry at everything. I tell myself, 'This is my husband that brought this to me. I am going to be sick and die. My baby is going to be infected and die. How am I going to leave my firstborn child, and he is still so young?' "Mbono was more fortunate than her sister. The clinic where she tested had just started offering Besser's program.

The counselor took her to the mentoring group, just a few steps away. She refused to look in. "I didn't want to see sick women and their dying babies," she says. But when she opened her eyes, she remembers being "shocked and relieved. Because I see happy people. I see healthy moms and their healthy children playing on the floor."Mbono now believes that single act of joining the group has saved her life, certainly the life of the child she was carrying.

Exporting success
In California, Besser, 51, had a large private practice and headed the maternal HIV clinic at UC San Diego from 1990 to 1999, where, he says, there has not been a single case of mother-to-child transmission among clinic patients in the last 10 years. "If we could make it happen there, why not elsewhere?"

He looked to South Africa, where the AIDS epidemic is growing exponentially. But in such a struggling young democracy, with so many urgent priorities, elimination of HIV has not been at the top of the government's list, Besser says. There has been little education, testing or available medication, especially in poverty-stricken areas.

As it stood, the overworked clinic counselors and nurses only had time to deliver the test result and quickly explain the proper medications and other precautions. "Imagine thinking you're healthy, then being told you have HIV. Your mind is spinning," says the lean, youthfully intense Besser. "You think you and your baby will die. You can't tell anyone or ask for help. And while you are thinking all this, the counselor is telling you what medication to take, how to feed the baby, how to have safe sex. All in one session, while you are traumatized. Nothing sticks. And that is the last time anyone talks to you.

"Besser is an even-featured man who, even when standing still, tilts forward as if he's about to break into a run. Like a race car idling fast, he exudes a certain kind of drama as he speed-talks in a soft, urgent purr, spewing out facts and figures to explain in a few minutes what it has taken him a lifetime to learn. Drugs and treatment protocols recently made available in South Africa are not as sophisticated and effective as those in the United States, he says. But they work. And while his program does not test or deliver medications, it is a catalyst for women to utilize what is available.

In addition to allowing women to share knowledge about how to prolong their own lives and prevent passing the virus to their babies, the program has turned into a kind of group therapy project, he says. Sharing the stigma and pressures they face has led to new methods of confronting and dismantling those problems. "Look at us," the women tell the newly diagnosed, "we are happy and healthy, and so are our kids. You can be too."Though Besser is just one of dozens of individuals and groups striving to eradicate HIV and AIDS in underdeveloped countries, his work demonstrates how one man's inspiration and drive can help change the health course of a country and the life course of those who learn about his work.

The turning point
Last February, Besser got a call that his sister Karen, 48, had gone in for minor surgery and hadn't awakened from the anesthetic. She was in a coma. He flew to her bedside in Chicago, as did Karen's best friend from college, Robin Smalley, a Los Angeles TV producer. While they were together in the hospital for two weeks, until his sister died, Besser so inspired Smalley with talk of his work that she later went to visit him in Cape Town."That week turned my life upside down," she says. "I was blown away by the courage of the women, and the job they were doing to help each other, and the joy and gratitude they feel at just doing it."

Smalley came home and asked her architect husband to move there with her for a year so she could volunteer administrative help, because "the program was exploding, and Mitch was basically running it alone." Her husband surprised her by saying yes. "I could never even get him to move to Santa Monica," Smalley says. They took their two children out of private school and have since lived in Cape Town, where she is an executive administrator for the project.

Smalley says she will continue her work with Besser even after the family returns to L.A. "I'll just fly back and forth," she says. "It's the most gratifying work I've ever done. To see so many women empowered, so many babies born HIV negative that otherwise might not have been."Another discipleGene Falk, 51, who has known Besser since their days together at Williams College, has also fallen under his friend's sway.

Until last year, Falk was a vice president at Viacom in New York. "I was in Mitch's wedding. I'm the godfather to his kids. So when I heard about Cape Town, I decided to visit." That was in 2002. "Mitch was running the Mothers' Programmes from the back of his truck. I fell in love with what he was doing."Falk visited a few more times and decided he, too, had organizational skills that could help Besser expand. He and his partner sold their New York condo in May and bought a house in Cape Town.

In fact, Besser's work has inspired all sorts of support from American corporations and universities. In New York recently to solidify those kinds of connections and to raise funds for the expansion, Besser brought along Mbono and two other mentor mothers, Queen Mda and Minky Ntelwa, to speak on what the program has meant to them.Mbono, serene and eloquent, explained to anyone who asked that the group had become her true family and her emotional sustenance. Her second son was born in 2003. He does not have the virus, and she has done everything necessary to keep him that way. Mda, too, gave birth to an HIV-negative son. Ntelwa was not so fortunate. Although she took her medication as directed, she says, her son was born HIV positive. The group helped save her sanity, she says, and she is now proud to be a mentor.

The mentors, Besser says, are not just living with HIV, they are living beyond it. Because they are paid a small salary, they are becoming financially independent and entrepreneurial in other ways. Beading groups, blanket-making groups and other income-producing adjuncts are now part of the program, helping the women feed and clothe themselves and their babies. Some are even able to save small amounts, in hopes of someday buying a better house. With emotional support from the group, they have become less afraid to risk disclosing their illness. (Women in South Africa have been beaten to death after admitting their HIV-positive status, Besser says.)

To stay healthy, the women must take medication and formula-feed their babies, both of which are dead giveaways that they have the virus, Besser says, so the women don't do either if they're afraid of being found out.Some have even gone so far as to occasionally wear T-shirts that say "HIV positive and proud." They have become activists and educators, professors of a sort.

Women who would once have felt like outcasts now have a special, enlightened community of their own, one that bestows dignity and professional purpose.Besser says even he couldn't have imagined how far-reaching the program would become.

He is careful, though, to point out that he is just one of many who are working to eliminate HIV in South Africa, and nowhere near the most important, citing Fareed Abdullah, a local health official who set up the first HIV treatment program there.Besser is affiliated with three Cape Town hospitals and the university in addition to working on his Mothers' Programmes, and he also spends a portion of his time in medical research.

Until he began receiving a salary very recently, he had helped support his wife, an epidemiologist, and two young sons by flying back and forth to the United States to fill in for doctors who were taking short leaves. He was drawn to South Africa, he says, for the opportunity to make a direct difference.

"You get a sense here that you can change things — that with energy and commitment you really can help make things better. Just look at the orphan issue, for example. If we can flatten the curve of orphans created by parents dying of AIDS, just think what that means to the country and the culture…. " And he's off and running again. His impact is borne out by the mentors. "If I didn't join this group, I would already be dead," says Ntelwa. "I saw no future for me and my child with HIV. I was just facing a grave. When I started the program, I started a whole new life."

Source: Los Angelos Times at http://www.latimes.com/features/lifestyle/la-et-besser24jun24,0,3075873.story?page=2&coll=la-home-style

Kenya: SIMA helps to fight HIV related stigma

2005-06-20T23:28:00.000+07:00

SIMA is a community based organization started in 1993 and registered in 1994 with the government of Kenya. Since its inception, SIMA has addressed issues related to HIV/AIDS and poverty. Due to wide field of operation, SIMA has found it necessary to collaborate with stakeholders and has since established its networks with registered organizations at grassroots, national and international.

The HIV/AIDS pandemic has continued unabated despite efforts by individuals and groups to curb new infections; cases of suicide committed by HIV positive person’s and stigma & discrimination are on the rise. This calls for persistent efforts right from the grassroots level in managing the trends. The Trans-Nzoia district is among the top five in the Rift Valley province in Kenya. Especially areas such as: Matisi location, Waitaluk location, Kiminini division, Korongolo/Kampoi areas, Amuka Farm, Lukhome Sub location and Sivanga location needs diversified support to counter the diverse cultural, social, economic, religious and political attitudes & behaviour that tend to contribute to rising HIV infections trends: Since the district is cosmopolitan with over 31 tribes of the 42 tribes of Kenya.

AIMS & ACTIVITIES
SIMA’s programmes are aimed at reducing new HIV infections, offering basic support to people living with HIV/AIDS and AIDS orphans, and establishing an effective behavior change for positive living by 2006, counseling, training, home based care provision, education support, community mobilization/sensitation, legal representation of sexually abused, rape, IGPS development and capacity building.

“HIV infection is not what might kill me but the though of rejection and negative altitudes from most people a round me” said one respondent for a person with HIV/AIDS, the feeling of rejection by society and family is a devastating experiences.

Rejection is not always the result of judgment and censure on moral grounds. Often, it occurs because the family members, friends and neighbours do not know how to cope with a person who is suffering from AIDS and the misguided fear of contracting the diseases. They feel awkward, embarrassed and therefore, withdraw from the person who most needs their love and friendship.

Through visiting those people living with HIV and we have experienced, there is a lot of stigma associated with the disease and a lot of care and support is required to assist those infected and affected to help them LIVE more meaningful LIVES. As a result of one or more family members being infected or having died of AIDS, the surviving family members especially the children are greatly affected. The burden of providing for those infected and affected is enormous as there is a loss or reduction of income due to frequent illness; loss of employment with the closure of small-scale business due to stigmatization and or all the money from the business is spent on drugs and food.

Due to their frequent illness, people living with HIV/AIDS (PWHA) and their families are reduced to abject poverty. Their basic needs including food, medication, clothing, shelter and counseling are rarely met.

Through our experience again, many victims in the rural areas have to walk long distances (15 – 30 km) to get treatment and attend group therapy. It was noted that people who are living with HIV, respond to the news of the there HIV status with feelings of shock, fear, lonely, anger, guilt and depression. To cope with and overcome such feelings, accept oneself as a person with HIV and live a positive and meaningful life is not easy. It requires a lot of care and support from the family and community in large.

Many times, the family members do not know that one of their own is HIV positive. They get worried when she or he fails to get better and try all types of treatments to no avail. Unfortunately for others, when their HIV status is know they are rejected.

Another cases from a victim, “My father, mother and sisters assisted me in the beginning but when they realized I was HIV positive and was not getting better they slipped away – their visit are now in anticipation of my death”.

Stigmatization of those infected is rampant. HIV/AIDS related with stigma and discrimination presents a serious challenge to the effectiveness of AIDS prevention, control and care programmes. Those whose relatives, friends or neighbours know their HIV/AIDS status talked of being discriminated against.

In addition, manifestation of HIV/AIDS related stigma and discrimination differs by gender. In some areas and culture belief, in-laws regularly blame women in particular for the deaths of their husbands. In some cases women are accused of infecting their husbands as a result of their ‘perceived promiscuity’. The socio-economic status and financial security of the victims affect their stigmatization by enabling those with higher incomes access to better health care and confidentiality.

The guardians such as grandparents who are caring for their daughters- children said that it has been very difficult to care and support these children. Said one respondent whose six children’s died and left her with seven children, “we live in this small room, many times I feel very depressed, especially when the children fight for a food.”

Some of the women we interviewed admitted their husbands are repeatedly infecting them with sexually transmitted infections (STI’s) even when they know both of them are HIV positive. One woman said, “I know my husband has severally infected me with STI s but he has refused to go for counseling. I know he is HIV positive, positive like me but he tells me I am the one who is sick. He has threatened to marry another wife because I am not giving him more children. This annoys and worries me. I have tried to keep myself fit and well groomed but my husband is not appreciating.” Consequently, many of the respondents have taken measures to change their sexual behaviour. For instance over half of those counseling are currently abstaining from sex.

SIMA organises performance, theatre song & poetry, drama, traditional dancers, forming youth health clubs and other events to campaign for preventing HIV/AIDS by passing out information to the people in the entire community at the grassroots level. Also SIMA uses this information to sensitize the community affect of HIV/AIDS related stigma, discrimination and how to reduce it. So we would like to invite you, to come to discuss this further with those people living with HIV positive openly. We have a big problem in our community at grassroots level.

Contact Information:
Johnstone Sikulu Wanjala
Programme coordinator
Sima community based organization
Email: sikuluj@yahoo.com
PO BOX 1691, Kitale 30200 Kenya.
+254-733 453 339

South Africa: Fear of Stigma Still Prevents Disclosure

2005-06-15T04:33:00.000+07:00

UN IRIN, June 13, 2005

Zeni's baby arrived prematurely while she was visiting her mother in the KwaZulu-Natal province of South Africa and was rushed to the nearby Edendale Hospital.

She had been scheduled for a caesarean section at Chris Hani Baragwanath Hospital in the country's largest township, Soweto, near Johannesburg, but gave birth by natural delivery at Edendale, about 500 km away.

Zeni was too scared to tell the hospital staff there that she was HIV-positive, so her baby boy didn't receive the nevirapine he needed. "He didn't get the syrup; maybe if he got the syrup he would have been fine," she said.

On her day off she had come to spend some time with nine-month-old Thabo, who was in Baragwanath hospital again, where was feeding him formula in a crowded paediatric ward.

His eyes were bright and he smiled readily but, with his stick-like limbs and an oxygen tube attached to his nose, he was the image of vulnerability: he is HIV-positive, has tuberculosis and is in and out of hospital with chest infections.

"My heart was very sore because at least I have had a chance to experience life - what about my son? He doesn't know anything; he is still young," she said, hugging her baby closer. "When I look at Thabo I feel like crying. I just tell myself one day he's going to get thin, because most of the people who've got this HIV thing, they get thin."

Despite her difficulties, Zeni, 30, sparkles with enthusiasm and zest for life. She has now sent Thabo off to KwaZulu-Natal to be looked after by her mother, while she tries to hold on to a poorly paid job and care for her elder son, who is HIV-negative.

So far, she has kept her status to herself - her partner, family and friends are still in the dark; only the hospital staffers know why her baby is so sick.

Like so many other women, Zeni is too afraid to disclose her status because of the persistent stigma around HIV/AIDS. "It's not easy to disclose yourself ... you are thinking ... maybe these people, they will neglect me, you see."

She is one of the roughly 25,000 women who have tested HIV-positive at Soweto's 13 public clinics over the past three years. Counsellors at the PHRU, based at Baragwanath and one of the largest AIDS research organisations on the continent, report that the inability of women to disclose their status is one of the biggest obstacles in the fight against HIV/AIDS.

PHRU psychologist Ray Lazarus noted: "Many of our counsellors feel completely frustrated and disempowered by the fact that the client won't disclose." However, as he pointed out, "experience around the world suggests that we have to think of disclosure as a process and not an event".

According to a PHRU study conducted last year, most women do eventually disclose to a family member or friend, but many still stall when it comes to their partners.

Dolores, 34, a mother of two, explained why she could not tell the father of her second child, John, that she was HIV-positive. "You know, it's a question of who came with the disease - I don't know whether I am the one who came with HIV from my first relationship, or whether John had it all the time. At the end of the day I am the one who will be blamed."

The fear of stigma and the resultant rejection is often greater than the actual experience of it. "Usually the fear in the mind is greater than the reality - women think that if they disclose they will be chucked out, but very few actually experience this," noted Zandile Myeni, director of the prevention of mother-to-Child transmission (PMTCT) project at the PHRU.

Nevertheless, the dread of being ostracised, kicked out of home or blamed for passing the virus to a baby are enormous barriers to disclosure, and the stress of keeping the secret often appears to hasten the onset of illness.

HIV is merely the latest of many diseases, including leprosy, cancer and TB, to be stigmatised, but what makes it particularly intense around HIV/AIDS is that it concerns the usually taboo subjects of sex, death and bodily wastes, such as the diarrhoea that plagues many people with AIDS-related illnesses.

Research shows that people living with HIV/AIDS are all too frequently perceived as sexually promiscuous, the 'walking dead', or contaminated and unclean.

Several women interviewed by Philippa Garson, a research fellow at 'the HIV/AIDS and the Media Project', run by the Perinatal HIV Research Unit and the school of journalism at the University of the Witwatersrand, said they would not disclose their status to family members or friends, because of the "way they talk about people with HIV".

Karabo, a receptionist who has just given birth, said she would never disclose her status to her sister, who has told her she "really hates them [people with HIV]".

"When I said to her, 'What if I have HIV?' she said, 'Then I will not see you again in my house'."
Many expected that the launch of the government's plan to provide free antiretrovirals at public health facilities would help diminish stigma by presenting HIV a chronic, manageable illness rather than a death sentence. But the pace of the rollout has been slow.

About 45,000 people are receiving the drugs, and the government is now close to meeting its target of providing treatment to 53,000 - admittedly a few months past the March 2005 deadline.

For Evelyn Keswa, who coordinates the PMTCT programme at Soweto's Lilian Ngoyi community clinic, education is the only way to eradicate stigma. "People need to understand that if I'm positive it doesn't mean I slept around more than the person who is negative; people need to accept positive people and understand that it can happen to anybody."

Source: UN IRIN -- 6/13/05

Front-line health workers - crucial to tackling TB and HIV related stigma and discrimination

2005-05-21T04:12:00.000+07:00

by Andy Seale, Advocacy Adviser UNAIDS

The role of health care workers throughout the world is crucial to an effective AIDS response for a number of reasons. Health care workers not only contribute in the obvious way through staffing essential health services that directly save and prolong lives but they are also critical in challenging the stigma and discrimination that still violently threatens an effective response to AIDS.

The impact of stigma and discrimination has long been documented - ignorance and fear around HIV and AIDS can lead to communities stigmatizing those most associated with the epidemic. Stigma and discrimination combine to create an environment where people are less likely to confront HIV. As we know, inaction whether it is from governments or individuals - can be fatal.

Stigma and discrimination present a complex challenge because we know that when there is a greater uptake of HIV and AIDS services’ communities often start to break down the cycle of fear, denial, stigma and discrimination. This helps to create the kind of environment where stigma is less likely to take hold in the first place. It is therefore absolutely crucial that the health care environment is free of stigma and discrimination – placing considerable responsibility on the shoulders of health care workers.

Sadly, and despite the awe-inspiring work of many health care workers around the world, surveys from a wide range of countries have shown a significant number of health care workers admitting to having refused to care for an AIDS patient, or had denied HIV positive patients admission to a hospital. People all over the world have experienced discrimination at the hands of health care workers with many denied medicine because of their HIV status - yet ironically we know that greater access to care and treatment is a key factor to undermining stigma.

Health care workers play a crucial role at every level in ensuring that services are stigma-free and non-discriminating. And when they interact within their communities outside of work they are also in a strong position to enlighten others about the realities of HIV and AIDS and challenge stigma.

Who is better placed to talk candidly about the challenges and realities of people living with HIV and AIDS outside the infected and affected communities themselves? Surely it must be the people who work most directly with people living with HIV and AIDS? The role of health care workers must not be underestimated.

Increasing access to treatment is one of the most powerful incentives for individuals to discover their HIV status and the prospect of a longer more productive life for individuals encourages communities to reassess the way they relate to people living with HIV, creating a sense of hope and reducing the feelings of threat and burden which can trigger stigma in the first place.

Other powerful efforts to curb HIV-and AIDS-related stigma and discrimination are driven by the involvement of people living with, or affected by, HIV or AIDS. Where health care workers nurture close relationships with their clients there is always less stigma -both in the health care setting itself and often in wider communities. HIV and AIDS-related stigma and discrimination often builds on pre-existing social inequalities, prejudices and patterns of exclusion, and further marginalizes people who are already most vulnerable to HIV. These groups, depending on the national context, can include women and girls, men who have sex with men, sex workers and their clients, injection drug users and sexually active young people. It is essential that health care workers are supported to interact effectively with marginalized groups and to reflect on how they can work with them to combat stigma and discrimination.

The stigma around death and AIDS remains high in many contexts and is one area familiar to those also working in TB. Families often prefer to record the death of a loved one as TB-related rather than AIDS-related as they perceive there is less taboo around dying of TB compared to AIDS. When we look at the reasons for this stigma we can see it is usually driven by ill-informed concepts of “innocence” and “guilt” around modes of transmission. We can then understand why TB can be more “acceptable” to some people. Health care workers are uniquely placed to be able to remind people that these are both 'diseases' that require a dignified and professional response.

Much can be done to improve health systems and country-level capacity to deal with both AIDS and TB but as we all rally and advocate for improved health infrastructures and scaling up of interventions - let us not lose sight of the crucial role health care workers also play in fighting stigma and discrimination.
We all need to do more to acknowledge and support this vital role. But this is not easy. The negative consequences are all too obvious when stigma and discrimination occur in health settings but it is hard to measure how health care workers contribute to positively changing attitudes and challenging stigma. Yet it is not impossible. We all owe it to health care workers around the world to think creatively of how we can best capture and document the positive impact they have on influencing attitudes and challenging stigma and discrimination. Their work in this field is truly invaluable.

(March 2005)

Source: Stop TB eForum

Malawian pregnant women opt out of HIV test for fear of stigma

2005-05-20T02:39:00.000+07:00

Many pregnant women in Malawi choose not to undergo HIV testing, despite the promise of free anti-retroviral (ARVs) drugs, because of the social stigma surrounding the virus.

In May 2004, Malawi began a five-year, $196 million programme to provide ARVs to HIV-positive people nationwide at no cost. The programme is funded by a grant from the Global Fund To Fight AIDS, Tuberculosis and Malaria.

As part of the programme, many prenatal clinics in Malawi offer HIV testing for pregnant women, and women who refuse are offered the test again before delivery. Many hospitals then give HIV-positive women the ARV nevirapine to prevent vertical transmission of the virus.

However, many women are refusing to be tested because they fear their husbands or community members will shun them. Some women fear that their HIV test results might be revealed when HIV prevalence statistics are published for the country, even though the tests are confidential.

UNAIDS estimates that Malawi has an HIV/AIDS prevalence of 14 per cent and that about 84,000 Malawians died of AIDS-related causes in 2003.

Kaiser Network 18/May/05

SOURCE: IPPF News

HIV, TB, human rights and stigma

2005-05-03T23:25:00.000+07:00

Executive Summary of the WHO: Stop TB Guidelines for Social Mobilisation (2001) The full guide is online at: www.stoptb.org/world.tb.day/WTBD_2001/HumanRightsReport.htm
***

Tuberculosis (TB) is deeply rooted in populations where human rights and dignity are limited. While anyone can contract TB, the disease thrives on the most vulnerable—the marginalized, discriminated against populations, and people living in poverty.

This guide examines the human rights dimensions of issues affecting people’s vulnerability to contracting TB and their access to TB cure. It looks at specific groups and settings where people are particularly vulnerable to TB and its impacts; and where, if they become sick with TB, are limited in their access to treatment—limitations created by stigma, lack of adequate information, and inadequate resource allocations to those most in need.

The principle of non-discrimination is fundamental to public health and human rights thinking and practice. Gender discrimination, for example, in addition to directly affecting vulnerability to TB and access to TB services, can deny girls and women access to education, information, and various forms of economic, social, and political participation that can increase health risk.

Neglect of the right to information can also have substantial health impacts. Misinformation about what causes TB, how the disease is transmitted and whether it can be cured is linked to the stigmatization of TB and of people with TB. Children in households with TB may also be taken out of school or sent to work. Both situations deprive children of their right to education and put them in situations that may expose them to more prolonged contact with persons with active TB.

Women, children, migrants and refugees, people in prison, and people living with HIV are some of the groups whose vulnerability to TB is discussed.

Prisons are examined as an environment that increases vulnerability to TB. It is argued that "because tuberculosis is easily diagnosed, treatable, and curable but may lead to death if neglected, contracting tuberculosis and not getting treatment because of poor prison conditions may be considered to be a violation of human rights." Both the prison population and the general community have the right to protection from TB generated in prisons and other institutions.

The need to address TB and HIV together in light of the human rights dimensions is urged. Conditions that enhance vulnerability to TB—poverty, homelessness, substance abuse, psychological stress, poor nutritional status, crowded living conditions—also enhance vulnerability to HIV. Both epidemics register their highest rates of infection among populations that are typically disadvantaged or marginalized in their own societies.

The dual epidemic of HIV and TB raises issues of individual choice and confidentiality. Individuals have a right to privacy that protects them against both mandatory testing and disclosure of their health status. Individuals also have a right to education and information about TB, HIV, and the synergy between the two infections so that they can make informed choices about testing and treatment options.

"A health and human rights approach can strengthen health systems by recognizing inherent differences among groups within populations and providing the most vulnerable with the tools to participate and claim specific rights."

Human rights is also presented in the document as a tool for data collection and analysis. Human rights principles and norms are relevant when choosing which data are collected to determine the type and extent of health problems affecting a population. Decisions on how data are collected (e.g. disaggregated by age, sex) also have a direct influence on the policies and programmes that are put into place. Collection of data should be disaggregated and analyzed to draw attention to subpopulations, particularly those vulnerable to TB, in order to ensure that discrimination can be detected and action taken.

Attention must be paid to involving the most vulnerable and marginalized sectors of society in setting priorities, making decisions, and planning, implementing and evaluating programmes that may affect their development. Human rights puts the individual at the centre of any health policy, programme or legislation. Active, free, and meaningful participation of individuals is an integral component of a rights-based approach.

A human rights approach to TB is proposed as an avenue for social mobilization to stop TB. Social mobilization is defined as a broadscale movement to engage people’s participation in achieving a specific goal. It involves all relevant segments of society: decision and policy-makers, opinion leaders, nongovernmental organizations such as professional and religious groups, the media, the private sector, communities, and individuals. Social mobilization is a process of dialogue, negotiation, and consensus for mobilizing action that engages a range of players in interrelated and complementary efforts, taking into account the felt needs of people.

The interdependence of human rights, for example the right to non-discrimination and the right to information as integral to achieving the right to health, and the need for all levels of society to be mobilized around the core principles of human rights, calls for a social mobilization approach.

Health systems and health care delivery are increasingly taking human rights norms and standards into account. This is reflected in a new focus on questions such as: is there equality of access? Are privacy and confidentiality maintained? Do the providers practice non-discrimination? Is there sufficient attention to vulnerable groups? Experience has demonstrated that when health systems take these and other human rights issues into account, patients and public health are both far better served.

Source: Stigma-AIDS eForum, stigma-aids@eforums.healthdev.org

Social stigma deadlier than AIDS itself

2005-05-03T23:18:00.000+07:00

By Nyokabi Kamau, The Nation
28 March 2005

NAIROBI (The Nation)-- A RECENT REPORT ON THE SITUATION OF HIV AND AIDS describes it as being in its "death phase".

This is not information that anyone can take for - granted. We are losing lives, but we know many of the deaths can be postponed if only we cured the worse epidemic of stigma.

When former South African President Nelson Mandela shared with the world that his son had died of AIDS complications, he did one thing that surpassed all his other efforts in the fight against the AIDS scourge, because by doing that, he helped to fight the bigger epidemic of stigma.

Stigma is compounded by fear of an incurable disease, fear of death after long suffering, association of HIV/AIDS with sexuality, and a misunderstanding of its causes.

Stigma is indeed deadly because it hinders both prevention of HIV/AIDS and provision of quality care. It is deadly because every human is a social being and when rejected, people become very affected causing death long before the virus could kill.

Two months ago, I read the testimony of a young man who was wrongly diagnosed as HIV positive (Daily Nation, January 26). I could not believe that in the year 2004, HIV tests are still been carried out without any counselling and are still a prerequisite to getting a job.

This young man was simply told he had tested positive and left to decide how he would live with the news.

As would be expected, he ended up in such serious depression, and caught TB which made him believe that he actually had AIDS (assuming he knew the difference between being HIV positive and having AIDS).

At the TB clinic, a HIV test turned out negative, and all other subsequent tests have been negative.

He was one in a million who had his results proved wrong, and indeed lucky that he had not died by the time the second test was done. My heart goes out to the many Kenyans who may be going through the pain that this man had to go through, yet they are not as lucky as he that their first test proved wrong.

I am worried about the attitude that has continued to thrive in this country that makes the stigma a worse epidemic than AIDS itself.

At least, it is now clear that those who accept their status could live for years, but those who cannot stand the stigma must die earlier than they should. This is very unfortunate because stigma is socially constructed, hence it is curable.

An effective way of dealing with stigma is simply assuring people that they are better off knowing their status, that they need not give up if infected, and that there can be quality life after HIV!

If such messages are repeated as often as the condom adverts and those that focus on moralising HIV/AIDS, then we can begin to cure the stigma.

Instead of focusing on positive messages, we continue to be bombarded with ads that simply perpetuate stigma, their messages being that one can only get AIDS if they are irresponsible drunks who have sex with people they do not know, and all that is in store for them if infected, is regret and shame!

Have those who design these adverts ever thought of the impact they have on all those innocent children who got infected through their parents? What of all those trying to live positively and to shun shame and guilt? What of the many children whose parents are infected, and who can only blame them for having being irresponsible? Is that the way we need to be going with our campaign?

One thing that is clear is that none of these messages have led to behaviour change. So why continue to air these ads if their only impact is to fuel stigma? I have taken time to compare the campaign on other equally fatal diseases like cancer, diabetes and heart ailments.

Take for example messages used during the cancer campaign month in October last year. I was so struck by their gentleness and the empathy that I went to have a breast scan for the first time. I was convinced that was the best thing to do if I wanted early managing, just in case.

Why is it so different for AIDS? How many of those reading this have voluntarily gone for a test because they believe this is the best thing to do? Why haven't we had just one "important" person go public on their own HIV status or a close family member's - like Mandela recently and Kenneth Kaunda before him? Is it because the stigma is too much for us to bear?

Let's cure the epidemic of stigma because it has a cure - which rests with us!

Source: Stigma-AIDS eForum, stigma-aids@eforums.healthdev.org

AIDS patients decry stigma at Mulago, Uganda

2005-05-03T23:12:00.000+07:00

The Monitor, 28 March 2005

[Mods note: This report suggests that HIV stigma in care settings may continue to be especially resilient. Alleged comments made by an MP in Uganda last month – that some people with HIV and on ARVs should be 'left to die' (reported in The Monitor, Kampala, 8 March 2005) confirm that there are ongoing challenges in the fight against HIV stigma.]

*************
KAMPALA -- MOTHERS LIVING WITH HIV/AIDS under the Maama Club have accused Mulago Hospital of discriminating infected women during labour. The AIDS Support Organisation (Taso) Clients' Manager, Ms Ruth Anteiveik, said doctors and nurses were mistreating pregnant women infected with AIDS.

She was speaking at the Maama's Club meeting at Mulago on Friday. "These women are roughly handled and given less care. This has caused loss of lives to many of them and their babies," Anteiveik said. The club's chairperson, Ms Fatumah Namata, said infected mothers need more attention to avoid mother to child AIDS transmission.

"We need special doctors who won't cause us stigma. Those at Mulago should be sensitised on this problem," Namata said.

Mulago Hospital head of clients, Dr Agnes Nyamayalwo, blamed the government for not solving problems of understaffing in the hospital. The Club founder, Dr Lydia Mungerera, encouraged the public to go for voluntary counselling and testing to plan their future.

Mothers received aid from the Project Coordinator for the Youth and Aid Association, Dr Paula Nahamya. The donations included basins, jerrycans, foodstuff and clothes.

Kampala Woman MP, Ms Margaret Zziwa, attended the meeting. She appealed to the government to secure an HIV/AIDS fund to support fieldwork and support AIDS victims.

Source: Stigma-AIDS eForum, stigma-aids@eforums.healthdev.org

India: Silence means death

2005-05-03T22:54:00.000+07:00

Express India, April 27, 2005.

WHEN it comes to AIDS, silence means death,'' UN General-Secretary Kofi Annan told HIV/AIDS patients at a meeting today. Annan urged them to declare that they are HIV-positive and speak about the disease, to reduce the stigma associated with it.

While he insisted that prevention and treatment is key, he also stressed the need to get rid of the stigma. ''Stigma and discrimination are rampant and hamper resistance to AIDS,'' he said.

The Secretary-General participated in a round-table discussion — Positive Voices Against HIV/AIDS — held at the UN headquarters in Lodhi Estate. The participants included six representatives of the Indian Network of People Living with HIV/AIDS (INP+), representatives of NGOs, Union Health Minister Dr Anbumani Ramadoss, NACO director general S.Y. Qureshi and Laxmi Bai, secretary of Dai Welfare Society.

''India stands a great chance and they don't want to go the Africa way,'' Annan said. His main concern seemed to be the discrimination faced by people living with HIV/AIDS.

His wife, Nane Annan, applauded the HIV-positive people who chose to speak out. ''I want to say you are courageous to come out in spite of discrimination. Thank you for contributing so much to society by speaking,'' she said.

Besides raising issues like lack of healthcare and nutrition, participants demanded legislation to prevent discrimination. ''When we declare our HIV status we should be looked at as role models for change. We can show people how to survive...we can do this only when our rights are in place,'' said INP+ member C.D. Costa.

''We have drafted a legislation and by the middle of the year we will have an Act,'' Ramadoss said.

''We have to reach out to young people. The age between 10 to 18 is crucial. There has to be an intersectoral response to reach the unreachable,'' said Dr Sunil Mehta, executive director of MAMTA Health Institute for Mother and Child.

''In India, 29 per cent of those affected with HIV/AIDS are women. Women are the new face of HIV. I am worried about the abandonment of the widows,'' Annan said.

Source: SAATHI
Online at: http://cities.expressindia.com/fullstory.php?newsid=126621

'I wish I had tested positive' – Kenneth Kaunda

2005-04-15T10:44:00.000+07:00

PUNE (Times News Network) -- "I wish I had tested positive. That would have helped me immensely fight the stigma and discrimination surrounding the deadly HIV/Aids infection," says the first president of Zambia, Kenneth Kaunda, who is better known for his crusade against the growing epidemic.

On a two-day visit to the city, following an invitation from the Pune-headquartered Emcure Pharmaceuticals, Kaunda has already met with "various stockholders" to spread a simple yet complicated message, "Let's fight Aids together."

"I got tested myself for HIV, but the result has been negative," he admits, admitting that he would have otherwise openly announced to the whole world.

While he has already held discussions with the Maharashtra governor SM Krishna at Mumbai, Kaunda, who is also accompanied by his son Waza Kaunda, who himself is a doctor and an expert on the disease, is scheduled to meet Congress president Sonia Gandhi, Prime Minister Manmohan Singh and union health minister Anbumani Ramdoss in New Delhi.

Chairman of the Kenneth Kaunda Children of Africa Foundation, his fight against the disease started particularly after losing his second son to the illness in 1986. "We immediately decided to tell the whole world that our son, who has left behind six children, has died of Aids," he says, as a matter of fact.

Himself a testimony to the large number of HIV/Aids related deaths in Africa, Kaunda says, "The death rate could have been controlled to a large extent if the affected parents or their relatives were more open about the disease."

"Our learning in the African continent in general, and Zambia in particular, has given us various insights that this is not just a medical problem but it needs to be addressed at the society and family level too," he says, adding, "The problem has to be tackled along with the medical side by addressing the stigma, confronting the wall of silence and pushing for preventive measures."

Calling for a radical change in the Indian laws and the mindset, he said it is important that people come forward for testing. "But unfortunately, that hasn't been the case so far. Even those tested positive go hiding for fear of stigma and discrimination."

Underling the need "to open up," he said political leaders and the younger generation should take the lead, and act as role models in getting themselves tested, which would then be emulated by the general population.

On the Indian laws debarring doctors to maintain confidentiality about the HIV status of a person, Waza says, "This is an important factor where we are losing the war against the deadly virus. In my opinion, doctors should be empowered, and the laws be amended in order to protect the medical fraternity."

The reason for doing so, according to Waza, is because social acceptance is the most important issue in fighting the disease. In Africa, after years of addressing these issues, people have finally started coming out in the open.

"And the results are evident to all. Children infected with the virus are still allowed to share the classroom along with others; widows are not being thrown out from the villages..."

Kaunda's pill:

* Sex only after marriage
* Abstain from illicit sex
* If you can't resist, use a condom
* Create mass awareness

Online at: http://timesofindia.indiatimes.com/articleshow/1050142.cms

Source: Times of India

Traditional healers, health workers and stigma

2005-03-19T13:05:00.000+07:00

When traditional healers first heard about HIV/AIDS, it was sometime much later than other health workers. In addition, their training/practice is based on cultural beliefs which encourage sharing problems and support of the sick in a holistic manner. This might explain why their reactions towards the disease and patients with HIV/AIDS are less judgmental than may be expected. Compared to other health workers, they accept AIDS patients easily.

In Uganda, following training by THETA (Traditional and Modern Health Practitioners Together Against AIDS), they initiated patient support groups, supported their clients through counselling to disclose their HIV status. Some of them decided to take an HIV test and shared their results with colleagues and family members. Two areas of "stigma" or is it inadequate knowledge of the HIV disease, that we have noted in our interaction with traditional healers (THs) are the common practice of giving "stronger treatments" for people with HIV/AIDS (PWHA) with the underlying potential risk of toxicity based on the belief that their disease is complicated, their bodies weak and therefore they need stronger concoctions. This is not limited to THs, health workers will not hesitate to prescribe a third line drug even where a first line medicine would have been sufficient. The liberal use of otherwise unknown drug regimens
in PWHAs is not rare. In other patients, there is a tendency to be cautious which is not the case in PWHAs. Could this be an underlying attitude of "after all this person has AIDS any way?"

The second area is that of confidentiality. Many health workers including traditional healers do not see why the information about a positive HIV test should remain confidential. Many will inform the uninfected/untested sexual partner about their partner's HIV status without seeking patient's permission. They justify this action as a Public Health duty to those who may not be infected yet!

Many health workers will not take an HIV test. Their reasons range from "I know what to do when I begin to develop HIV-related problems". "What is the point of a diagnosis whose care package is merely palliative". This is an indication of the level of stigma in the health care workplace. Even when colleagues begin to suffer from AIDS-related opportunistic infections, they resort to self -treatment, they pretend there is nothing wrong, and they live in denial to the very end. It remains a challenge how to provide support to health workers through existing counselling services. This situation continues to propagate stigma in the health care setting.

HIV-infected traditional healers who have been counselled find it easier to cope including sharing their results with others. I know of several who first learnt of their HIV infection while participating in AIDS training activities. They informed colleagues about the kind of herbal treatments they use to keep themselves free of opportunistic diseases. This may have been a form of advertisement of their products but it also pointed to reduction of stigma with increased understanding of the HIV disease.

Many health workers will tell you that those who open up about their HIV status have nothing to lose especially with regard to social standing and status or they are prepared to take the risk.

This shows that even in a country like Uganda that has been acclaimed to have succeeded in reducing the spread of HIV still has a major battle to fight. If having HIV infection is still a kind of crime among colleagues, clients and peers.

Donna Kabatesi, Uganda
Traditional and Modern Health Practitioners Together Against AIDS (THETA)
Email msftheta@imul.com

(Source: Stigma-AIDS eforum, April 2001. To join email Join-stigma-aids@eforums.healthdev.org)

An Overview: Stigma and health care providers

2005-03-18T11:28:00.000+07:00

HIV stigma can operationally defined as that invisible but strongly felt mark given to a person that makes him or her feel different than others. Many focus group discussions with patients and carers reveal that that the hospital was a key place where stigma was first felt or been sustained. The way an HIV suspicion or diagnosis was made, left a feeling of being different, of being looked down upon, inferior, or ignored. Examples we have heard or witnessed include:

- Inability to break the news at the bedside, the euphemisms used for HIV/AIDS among the clinical staff: “immuno-compromised”, “the RVtest came back”, all meant to “protect” the patient from bad news which in fact the staff cannot handle, resulting in news being spread as fire among all staff except the patient: the conspiracy of silence

- Immediate discharge after lab result is known to clinician or withholding a lab result until discharge, with the argument that very little can be done in the hospital and that it is better to see a community or home care program. Where, how, when and why is hardly addressed , giving the patient and family the feeling of being neglected (“dumping care”).

- Being provided with a different kind of care or lack of care, feeling ignored and less respected than other patients.

- Refusal to be admitted, in many hospitals in various countries up till today is still a major issue where stigma is bluntly being translated in immediate discriminatory action, again by marking a patient in such a way that even rights to emergency health care are being denied.

Such examples have also been seen with other diseases or conditions: TB, leprosy, physical disabilities, mental illnesses, and cancer. However in these instances effective therapies, social and psychological support have reduced stigma to a certain extent.

Attitudes and lack of knowledge and skills have been suggested as determinants of stigma in the health setting but are still poorly understood. Hence we have this discussion to get your views on the why, the areas for further study and the possible solutions.

The following factors could explain part of these attitudes and beliefs
among health staff:

- A judgmental reaction to what is perceived by many societies as taboos: sex in the sense of socially disapproved sexual relations and death, two aspects of life many people are often silent about, even more so when these two are linked as it is felt about HIV/AIDS.

- Personal fears of getting infected in the working environment usually expressed by health staff as the major reason for potentially stigmatizing actions, but often exaggerated and not always rational.

- Perceived fears of not being able to handle a patient’s emotional reaction to a diagnosis, often reflect the carers attitude and skills towards psychosocial care.

- Personal fear of one own’s serostatus as a health care staff functioning as a defense mechanism and creating distance between carer and patient . This fear is being aggravated in the absence of VCT services for health care workers. Very few counselors, nurses, doctors, or Ministry of Health staff know their own serostatus.

- Helplessness as a result of lack of counseling skills, lack of time or lack of treatment. Lack of drugs, in particular antiretrovirals are often used as an excuse for the conditions to allow stigma in the health care setting but there are now plenty of examples where HIV care providers have shown that with giving a bit of time and empathy, involving others who do have counseling skills, early and proper management and preventive therapy of opportunistic infections, good social support, good nursing care, good home care and above all good coordination between all these care activities, quality of life and survival benefits can be achieved at low cost.

An obvious result of stigma in the health care setting is silence, in fact a conspiracy of silence as all partners in silence know but don’t say. Somehow it has a protective effect for a patient initially as it gives time to cope with this unjust environment and allows privacy but eventually the silence will only aggravate the suspicion by many others and results in acts of discrimination. The silence becomes secrecy resulting in gossiping and the unspoken marking i.e. stigma occurs.

What are then potential ways to address, fight and reduce stigma:

-At the level of the care provider: openness while maintaining the confidentiality for an individual patient. That sounds as a contradiction but it’s not. An environment like a clinic or hospital can normalize HIV as a day to day business to be openly discussed in staff meetings, health education, public meetings etc showing as an example to provide patient friendly care and as well having peer doctors and nurses as models to juniors how to provide care with dignity, very important in such an hierarchical establishment as a hospital, while at the same time maintaining the needed confidentiality at the individual level through establishing counseling services and giving the feeling of patients of being supported and being left alone. Small things do wonders: body language, an ear to listen, a touch or a small effort extra.

-At the level of the client or patient: discussing at an early stage in the counseling process the options for sharing and disclosure, whenever a client is ready and involving that significant other identified by the client. Formation of groups of patients with chronic illnesses for social and educative events and involvement in planning the care need. Examples from TB wards and HIV support groups within hospitals in Thailand, Uganda.

-At the level of the hospital management: normalization of HIV, taking counseling serious, and providing staff time, space and support to implement services. Ensuring that breaking the news of a laboratory diagnosis is done in the context of counseling pre- and post-test and time to follow up. But also promoting all health staff to know their serostatus and facilitating an anonymous service including follow up care support for infected staff. Feelings of safety can be improved by setting standards to adhere to universal precautions and follow up through infectious disease management committees and provision of post exposure prophylaxis for accidental prick incidents.

-At the level of the community and family: informing and discussing again and again, stimulating care activities to be taken up by communities themselves, addressing prevention and care always together as that will help to normalize HIV/AIDS.

I am sure there are many more practical examples of how we can address stigma in the health care setting and as well many more thoughts on the determinants underlying stigma, hence this call for reactions, responses and ideas.

No doubt certain elements need to be better studied and we call on you for ideas for such an intervention-linked research and topics of research geared to better understanding

Dr Eric van Praag
Email: evanpraag@fhi.org
(Source: Stigma-AIDS eforum, April 2001. To join email Join-stigma-aids@eforums.healthdev.org)

A vital partnership: Stigma reduction and the health of PLWHAs

2005-03-14T19:05:00.000+07:00

A report from the last International AIDS Conference, in Bangkok Thailand, July 2004

Stigma and discrimination have been shown at this conference to be alive and well, and continuing to trouble the lives of people living with HIV/AIDS.

Stigma and discrimination against people with HIV/AIDS is seemingly entrenched in many areas across the world. A report published recently by the Asia Pacific Network of People Living with HIV/AIDS (APN+) – “AIDS Discrimination in Asia” – suggests 26% of people living with HIV experience some degree of stigma and discrimination in the community. The study also found women experience significantly more stigma than men, including twice the levels of violence. This raises the spectre of a strong gender component to stigma.

Other studies presented during the conference confirm that negative perceptions of PLWHA are as endemic as the virus itself. This is not news to many, of course.

But as talk of “scaling-up” and “mainstreaming” continues, initiatives will be seriously compromised if stigma and discrimination remain as common as they are now. Any healthcare initiative designed to improve the lives of HIV-positive people or to expand testing must consider the difficulties presented by current levels of stigma.

The situation is further complicated by stigma and discrimination experienced in the health sector – the subject of many papers presented at this conference. The APN+, for example, found that 26% of PLWHA experienced healthcare-related stigma. This is a clear disincentive to treatment, and could reduce the effectiveness of otherwise well-designed programmes.

For example, treatments intended to extend the lives of people with HIV/AIDS, such as TB prophylaxis or counselling on how to live healthily with the disease, can be highly effective in extending lives. But many depend on easy access to healthcare, and HIV-related stigma could be a major barrier to access in many areas across the world.

Dealing with stigma is not easy, however, because it is much more than just a “bad” attitude or fear of infection. Stigma is a socially constructed phenomenon that, according to Peter Aggleton of the University of London, is “not random, but systematic – reinforcing existing divisions” in society. Stigma reduction is therefore not about passing on information, though this may play a small part. Instead, it requires a significant conceptual and cultural repositioning.

But the news was not all bad this week, and attempts to reduce stigma at the personal level are clearly taking into account social context. A number of skills workshops have been held, a common theme to them all is the need for people to “know thyself” as a preliminary step to disentangling the knots of stigma and discrimination. The greater personal understanding that results helps people identify with, rather than exclude people with HIV/AIDS.

Other sessions looked at ways of “measuring” stigma. Some tried to locate the origin of stigma in national or institutional settings.

The fight against stigma will be protracted, but to continue is vital. Because if stigma and discrimination remain at their current levels, adequate healthcare and social support for people living with HIV and AIDS will be incredibly difficult to provide.

Can we afford another 20 years of this?

HDN Key Correspondent
Email: correspondents@hdnet.org

(July 2004)