South Africa: Men Falling Through the Cracks

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

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

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

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

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