GHANA: AIDS treatment on rise, but stigma still around

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

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

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

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