1 June 2006
Overcoming Stigma, Discrimination Concerning HIV, AIDS, Essential to Progress in Fight against Disease, Panel Told
NEW YORK, 1 June (UN Headquarters) -- Overcoming the "culture of rejection" associated with HIV and AIDS was the focus of another panel discussion at Headquarters today, as a broad spectrum of speakers, from clergy to trade union representatives, stressed that, only open hearts and minds would beat HIV and AIDS, and reverse the global trend of barring infected children from schools and dismissing HIV-positive adults from their jobs.
Panellists in the discussion on the second day of the United Nations High-Level Meeting on HIV/AIDS, on "Overcoming stigma and discrimination and changing the way societies respond to people living with HIV", were: Yuriy Polyachenko, Health Minister, Ukraine; Moni Pen, Positive Women of Hope, Cambodia; Reverend Canon Gideon Byamugisha, African Network of Religious Leaders Living With and Personally Affected by HIV and AIDS, Uganda; Claudia Ahumada, Youth Coalition and Centre for Legal Investigation, University Diego Portales, Chile; Raminta Stuikyte, Director, Central and Eastern European Harm Reduction Network, Lithuania; and Neil Gerrard, Member of Parliament and Chair of the All Party Parliamentary Group on AIDS, United Kingdom. Ad Melkert, Associate Administrator of United Nations Development Programme (UNDP), moderated.
The people most severely marginalized were not waiting for a seat at the table; those heroes had lit the path, and now the rest only needed to follow, participants were told. Ms. Pen from Cambodia issued an impassioned appeal for the people living with HIV/AIDS to be heard, as they were still facing stigma and discrimination, despite the most well-intentioned efforts of their Governments. Why their voice was still a whisper was the foremost question. The real empowerment of people living with the infection required their active and meaningful participation in society. Yet, so far, that had not happened. She had been impressed by the efforts of the Cambodian Government. Yet, at home, some relatives and neighbours were unresponsive to those living with HIV and AIDS. The world had spent a lot of money to combat the scourge. Now, giving the people afflicted with the disease a real voice would go far towards its eradication.
This week's Meeting must ensure that the people of the world escaped "the harsh pain of misery", Reverend Byamugisha said. Future generations would ask how a world community with the resources to fight the epidemic, whose roots of transmission were known, had allowed it to claim millions of lives, destroy promising economies, and leave millions of children orphaned and destitute. Religious leaders living with, or personally affected by, HIV and AIDS, were effective partners. His network alone, with 1,300 members across Africa, was helping religious leaders defeat the stigma and initiate congregational responses around the stigmatization, by encouraging people to participate in national-level advocacy and networking. The good news was that AIDS was manageable, and HIV/AIDS was preventable. The bad news, of course, was that AIDS could not be wished away, but demanded bold and aggressive efforts globally.
Reminding participants that youth comprised 50 per cent of all new infections, Ms. Ahumada of the Youth Coalition and Centre for Legal Investigation warned that discrimination led to fractured societies, which, in turn, led to an increase in HIV and AIDS. Stigma and discrimination were not abstract concepts, but real-life situations, affecting millions of people around the world. A case had been litigated in Chile two years ago, involving the finding that a 24-year old man was HIV-positive. He was undergoing surgery at the time, and had not requested the test for HIV or known that he was being tested. When he awoke from the routine procedure and learned of his condition, his reaction of shock actually led to his confinement to a psychiatric hospital for one month, without his consent and without access to either friends or family. He had no counselling about HIV and AIDS, and while hospitalized, he lost his job.
Raminta Stuikyte, Director, Central and Eastern European Harm Reduction Network, Lithuania, said that those most at risk were the last to be seriously consulted about their fate. In most countries, migrant and sex workers, and men who have sex with men were treated in a discriminatory way under the law. In the Russian Federation, up to 85 per cent of the more than 1 million people estimated to be living with HIV had been infected through injection. Yet, her Government had been against passing measures to prevent AIDS. That seemed like "little more than a conspiracy to slowly murder thousands of their citizens by inaction". In Eastern Europe and elsewhere in the world, drug users and sex workers, whether parents or sisters, were systematically ignored or seen as statistics to be managed, rather than as partners in a solution. "We can, and must, do better," she urged.
Politically -- at the United Nations and in various parliaments around the world -- the tools were there to deal with stigma and discrimination, Mr. Gerrard asserted. There was nothing new in trying to address the problem of stigmatization. The issue was why nothing had been done in the 10-year period since 1996. Every policy discussion had made it absolutely clear that there was no contradiction between public health concerns and concerns about human rights. Legislation that safeguarded human rights and dealt directly with issues of discrimination was necessary, but legislation on its own was not enough. His group tried to have regular and constant contact with organizations of people living with HIV. That also helped to give them a voice to raise concerns within the political system. He hoped to turn national policy into local action.
In the ensuing discussion, Botswana's representative said that, having been involved in AIDS activities since 1985, she knew that one of the prime objectives was to mobilize political will and commitment for affordable and sustainable services, and to integrate into those services stigmatization-reduction strategies. That had been done in Botswana, and the results were now bearing fruit, including with the drastic reduction in mother-to-infant transmission. Indeed, funeral parlours were closing. The greater involvement of people living with AIDS, particularly of men, was of great importance in reducing the stigma.
Weighing in on the need for even more determined advocacy and strategies was a representative of the International Labour Organization (ILO). He said that people infected with HIV and prevented from working said the loss of jobs was killing them faster than the disease. Two thirds of adults living with HIV and AIDS were workers, and the workplace, therefore, was an essential point of access for combating the pandemic. Winning the war against HIV/AIDS required overcoming stigma and discrimination. Only that would promote equal access to treatment. That required national and global frameworks for intervention, the setting of basic principles, and the express banning of discrimination in the workplace. The ILO had attempted to meet that challenge and had broken ground in combating the scourge in the workplace. He urged effective awareness-raising campaigns and the mobilization of policies involving leaders of workers' organizations and enterprises at national and international levels.
From South Africa's Health Ministry, a speaker said that people living with HIV and AIDS were the embodiment of the fear about the disease. As long as HIV, on its own, was linked to AIDS, it would not be possible to deal effectively with the stigma. The conditions needed to be separated, and it must be ensured that those who were HIV-negative remained HIV-negative. It should also be ensured that those who were already HIV-positive lived long and healthy lives and delayed the progression to AIDS. If HIV was seen as automatically leading to AIDS, stigmatization would always be a problem. In South Africa, a distinction was made between HIV and AIDS, and the term "HIV-slash-AIDS" was not used. The preconditions or risk factors for the development of AIDS might not be the same for HIV.
On behalf of the African HIV Policy Network, United Kingdom, another speaker said that, in living with HIV, she had had to "get on with my life" with minimal support, letting the "chips fall where they may". It was very disheartening to hear that stigma was something that people living with HIV had inflicted on themselves. Equally disheartening was to hear that communities needed to be "managed". Communities needed to be supported, to be empowered to deal with the issues of HIV. Everyone needed to work together, stop defining what HIV was and deal with the issues at hand. There was a lot of goodwill to tackle stigma and discrimination. The challenge was to articulate the tools needed to reduce the stigma. "Let's work together. Let's stop talking about managing people. Let's talk about helping to support people to make sure they get the information they need, the right information. Let's demystify HIV," she urged.
A representative of civil society in Viet Nam said that stigma and discrimination had been a very serious problem in her country. Drug users and sex workers, in particular, faced a double stigma. The stigma should be tackled from the perspective of all vulnerable populations, including drug users and sex workers. In Viet Nam, there were now an estimated 300,000 people living with HIV. She emphasized the HIV-positive children, who were facing a "very heavy stigma", owing to the belief that they could more easily transmit the disease to other children, unknowingly, by biting or scratching. Thus, children known to be infected were sometimes barred from attending school in Viet Nam.
Mr. Gerrard said he had seen that problem with schools in the United Kingdom. National policy did not always translate into what happened at the community level. He suggested that there had been some success through interacting with non-governmental organizations that worked with the children and actually went into the schools and talked with parents and teachers.
* *** *