Human Rights Council holds Panel discussion on giving a voice to people living with or affected by HIV/AIDS

Human Rights Council
MIDDAY 20 March 2012

The Human Rights Council at its midday meeting today held a panel discussion on giving a voice to people living with or affected by HIV/AIDS.

In an opening statement, Navi Pillay, United Nations High Commissioner for Human Rights, said 31 years after the discovery of HIV/AIDS, significant gains had been made: 2.5 million deaths had been averted since 1995, new HIV infections and AIDS-related deaths had fallen to their lowest levels since the peak of the epidemic and 14 million people were now accessing life-saving treatment. A new Political Declaration on HIV/AIDS was adopted last year by the General Assembly which contained a number of goals and targets to sustain the gains. Funding was now a major challenge; the Global Fund to Fight AIDS, Tuberculosis and Malaria, had recently cancelled its eleventh round of funding. Funding the AIDS response was a human rights legal obligation, said Ms. Pillay, adding that the current economic crisis should not be allowed to translate into a reversal in the gains made so far.

Bience Philomina Gawanas, African Union Commissioner, Social Affairs and Commissioner of the Global Commission on HIV and Law, discussion moderator, said she was a person affected by HIV. The discussion about HIV/AIDS was not about numbers, it was not about saying the rights things, but about doing the right things. HIV/AIDS was not just a question of health, but a question of social justice.

Paul De Lay, Deputy Executive Director, Joint United Nations Programme on HIV/AIDS, speaking as a panellist on behalf of Executive Director Michel Sidibe, said that success was leading to complacency and that human rights were needed now more than ever to take the response to the next and, hopefully, final phase. It was imperative to maintain treatment for those who had received it, and reach, by 2015, the over 8 million people still in need.

Nontobeki Dlamini, International Community of Women Living with HIV/AIDS – Southern Africa, Swaziland, speaking as a panellist, told her story concerning the reproductive rights of women living with HIV/AIDS and asked whether she was deprived of having another child because of the insufficient knowledge of her health worker who suggested that she tied her tubes or because of HIV/AIDS.

Nick Rhoades, Centre for HIV Law and Policy, United States, said that he had been charged with criminal transmission of HIV, although HIV had not been transmitted. The issue was that of non-disclosure rather than transmission. He was sentenced to 25 years in prison, but was later released mainly because of public pressure and activities of groups he had been affiliated with.

Moyses Toniolo, National Network of People Living with HIV/AIDS, Brazil, said there were many forms of discrimination that people living with HIV/AIDS experienced in the workplace. It was important to demystify HIV/AIDS, to stress that it could not be disseminated in the workplace through social interactions and to change people’s perceptions of people who were infected so that those who lived with HIV/AIDS were no longer stigmatized.

Dmytro Sherembei, All-Ukrainian Network of People Living with HIV, Ukraine, said he was HIV positive and had spent ten years in prison where he had almost died. He survived despite the system and stressed that a human rights approach to HIV/AIDS should be focused on preserving the extreme value of life by providing HIV positive people with treatment.

In the discussion delegations said that protecting the rights of people who were living with HIV was a global problem which required attention from the international community with a focus on the provision of medicine at affordable prices. It was an issue that had also a significant impact on economic development. Several speakers said that progress in Africa had been possible due to the commitment of States, the resources provided by the Global Fund and the active involvement of civil society. Sustainable HIV financing options for Africa were necessary and international support was critical. The evidence generated by the Global Commission on HIV and the Law left no doubt that punitive legal environments were confounding effective HIV responses and that stigma and discrimination had contributed to counter-productive and unjust laws. The focus in the future needed to be on developing human rights based strategies that would also address the needs of vulnerable groups and evidence-based public health interventions must be grounded by a respect for human rights in order to achieve goals in combating the HIV epidemic.

Speaking in the interactive dialogue were Brazil, Senegal on behalf of the African Union, Pakistan on behalf of the Organization of Islamic Cooperation, the European Union, Belgium, United Nations Development Programme, Cuba, Germany, Uruguay, Ireland, Morocco, Ecuador, Indonesia, Norway, Algeria, Chile, United Nations Children Fund, Australia, Kenya Russian Federation, United States, Georgia, Honduras, Spain, International Labour Organization, Mexico and France.

The National Human Rights Council of Morocco, Canadian HIV/AIDS Legal Network and Conectas Direitos Humanos also took the floor.

In its afternoon meeting starting 3 p.m., the Council will hear the presentation of the report of the ninth session of the Intergovernmental Working Group on the effective implementation of the Durban Declaration and Programme of Action, followed by a general debate.


Opening Statements

ANDRAS DEKANY, Vice-President of the Human Rights Council, introducing the panel discussion, said that in its resolution 16/28 the Human Rights Council had decided to hold a panel discussion to give a voice to people living or affected by human immunodeficiency virus/acquired immune deficiency syndrome, in particular young people, women and orphaned children. The aim was to take their experience into account to reinforce the centrality of human rights in the response to HIV/AIDS, especially in the context of achieving the Millennium Development Goal 6 and in compliance with the Political Declaration on HIV/AIDS and the Declaration of Commitment on HIV/AIDS.

NAVI PILLAY, United Nations High Commissioner for Human Rights, said that the discovery of AIDS some 30 years ago had alarmed the world. People were shamed, stigmatised and ostracised. Through such actions and omissions HIV became a certain, albeit silent death sentence. Thirty one years later significant gains had been made: new HIV infections and AIDS-related deaths had fallen to their lowest levels since the peak of the epidemic; 14 million people were now accessing life-saving treatment; 2.5 million deaths had been averted since 1995; and 48 per cent of pregnant women living with HIV had received treatment to prevent vertical transmission in 2010. A new Political Declaration on HIV/AIDS was adopted last year by the General Assembly which contained a number of goals and targets to sustain the gains. At the forefront of this change were people living with HIV, civil society, human rights defenders, and HIV activists. These courageous people, some of whom were here on this panel today, had demanded affordable treatment and prevention, and placed human rights at the front and centre of effective responses to HIV.

A lack of respect for human rights had not only fuelled the epidemic, but also brought to the surface pernicious and persistent forms of discrimination and marginalization, in multiple and overlapping manifestations. The starting point in addressing this epidemic must be the recognition that all people were equal in the enjoyment of their human rights. It was no coincidence that the populations who were the most vulnerable to the epidemic not only bore the burden of the disease, but also endured a broad range of human rights violations. A human rights approach to HIV must also be concerned with monitoring the impact of policies and programmes and ensuring that HIV-related human rights violations were redressed including inequality and violence against women. Funding was a major challenge. The Global Fund to Fight AIDS, Tuberculosis and Malaria, one of the major actors in the global AIDS response, had recently cancelled its eleventh round of funding. Human rights obligations related to the right to health included ensuring the sustainability of access to HIV services. Funding the AIDS response was a human rights legal obligation. The current economic crisis should not be allowed to translate into a reversal in the gains made so far.

Statements by the Panellists

BIENCE PHILOMINA GAWANAS, African Union Commissioner, Social Affairs and Commissioner of the Global Commission on HIV and Law, said she was a person affected by HIV. She had lost cousins, nieces, nephews and other family members. Her family had told her nephew that he was still a human being and the family would love him the same as they always had. The discussion about HIV/AIDS was not about numbers, about how many had died or how many people were infected. She hoped the panel would discuss how it was to be human. At the final analysis, it was not about saying the rights things, but about doing the right things. Sometimes people heard but did not listen. The panellists should be listened to, not heard. It was a question about how human were human rights. When talking about HIV/AIDS, it was not just a question of health, but a question of social justice. It was about access to care. Were HIV specific laws required? Did a HIV positive woman have reproductive and other rights? It was a question of discrimination at the workplace. The High Commissioner referred to the “zero” campaign and information about that should be discussed.

PAUL DE LAY, UNAIDS Deputy Executive Director, Joint United Nations Programme on HIV/AIDS, speaking on behalf of Executive Director Michel Sidibe, said the last 30 years were a microcosm of the good, the bad and the ugly of how human beings could address a major global disease threat. The good was related to the realization and protection of human rights in response to AIDS. The bad was related to punitive and coercive approaches. And the ugly took the form of ongoing human rights violations which further traumatized those vulnerable to HIV infection or living with HIV. New infections were dropping and people infected with HIV were living long and productive lives. Ironically, success was leading to complacency. Human rights were needed now more than ever to take the response to the next and, hopefully, final phase. When treatment was being taken to scale they were beginning to see a significant drop in new infections. The human rights imperative was to maintain treatment for those who had received it, and reach, by 2015, the over 8 million people still in need. Resources for AIDS had dropped and the Global Fund was underfunded. Being more effective and efficient meant targeting resources and programmes to those most vulnerable and most impacted by HIV. Because of AIDS, drug patents were made accessible for the first time, using prescribed flexibilities. The AIDS response had been a force helping to drive the larger human rights agenda.

NONTOBEKI DLAMINI, International Community of Women Living with HIV/AIDS – Southern Africa, Swaziland said that her story started six years ago when she discovered she was pregnant. Her doctor had admonished her telling her that he was disappointed because she could not control her sexual life. Ms. Dlamini trusted him, believing he had had her best interest at heart when he had suggested that he removed her tubes. She then asked herself a question whether she could not have another child because of HIV/AIDS or because of her health worker who had claimed that she had disappointed him. It was due to lack of knowledge that tubes were cut in HIV positive women and Governments did not do much to protect their reproductive rights.

NICK RHOADES, Centre for HIV Law and Policy said that he had been charged with criminal transmission of HIV, although HIV had not been transmitted. The issue was that of non-disclosure rather than transmission; it was a one time relationship with a consenting adult where protection was used and his viral load was low. Mr. Rhodes had spent eight months in prison waiting for a trial and some sort of resolution; he was sentenced to 25 years in prison, but was later released mainly because of public pressure and activities of groups he had been affiliated with who tried to educate the judge, among other issues.

MOYSES TONIOLO, National Network of People Living with HIV/AIDS, said there were many forms of discrimination that people living with HIV AIDS experienced in the workplace. The speaker had been serving in the military service and following a surgery contracted AIDS. He was immediately dismissed from the military based on a law that identified his HIV status as making him incapable of exercising any labour activity. After seven years of psychological support, the speaker adopted a proactive attitude and became an activist. He had been part of the Brazilian delegation who spoke to the International Labour Organization about HIV/AIDS discrimination in the workplace. Mr. Toniolo stressed that it was exhausting to live constantly with medical consultations and to seek out antiretroviral medicines, which affected the way co-workers perceived those living with HIV/AIDS. The use of condoms should be promoted in all forms of relationships and there was a need for a cultural change in health education. It was important to demystify HIV/AIDS, to stress that it could not be disseminated in the workplace through social interactions and to change people’s perceptions of people who were infected so that those who lived with HIV/AIDS were no longer stigmatized.

DMYTRO SHEREMBEI, All-Ukrainian Network of People Living with HIV, said he was HIV positive and he had a dream that there would be no social stigma associated with this disease. For ten years, the speaker had been in prison living with HIV/AIDS and Tuberculosis and had almost died. He survived despite the system and stressed that there should be no obstacle to people living their lives despite an HIV/AIDS infection. Everyone should know what needed to be done to stop the AIDS epidemic. The basic human right to treatment and health was also the right to life for HIV positive people. Not allowing HIV positive people to receive treatment was a direct violation of their right to life. A human rights approach to HIV/AIDS should be focused on preserving the extreme value of life by providing HIV positive people with treatment.

Discussion

Brazil was proud to have sponsored the panel. Each panellist represented the millions who struggled not only against the virus, but also those who fought against discrimination and stigma, and for their rights to health and access to medicines.
Senegal, speaking on behalf of the African Group, said that progress in Africa had been possible due to the commitment of States, the resources provided by the Global Fund and the active involvement of civil society. Pakistan, speaking on behalf of the Organization of Islamic Cooperation, asked the panellists about the challenges faced with respect to accessibility and affordability and how the role of family and community helped in reducing the vulnerability of young people. European Union asked the panellists what were the main challenges in removing restrictions and punitive laws and how support could be provided to people with HIV/AIDS in countries where they faced massive stigmatization and discrimination. Belgium queried how an HIV/AIDS treatment approach which was respectful of human rights could be created. United Nations Development Programme said evidence generated by the Global Commission on HIV and the Law left no doubt that punitive legal environments were confounding effective HIV responses and that stigma and discrimination had contributed to counter-productive and unjust laws. Cuba said only a few countries, basically the rich countries, were able to decrease AIDS rates with irrationally highly priced medicines, while other countries saw decreased average life spans due to the unfair economic order. Germany said goals would not be achieved in the future if laws which punished homosexuality or failed to recognise drug addiction as an illness were not removed. Uruguay said prevention, treatment, care and support for those affected, access to medicine and combating discrimination were all important dimensions to consider.

Ireland said that education was the key weapon in fighting discrimination and asked the panellists to offer best practice examples of education programmes which had helped improve the lives of those living with HIV? Morocco said the human rights approach was important and noted the role of the national human rights institution in developing a national strategic plan to combat AIDS and to provide free antiretroviral drugs. Ecuador said protecting the rights of people who were living with HIV was a global problem which required attention from the international community with a focus on the provision of medicine at affordable prices. Indonesia said that eradicating HIV/AIDS was not only a human rights problem but also had significant impact on economic development. What was the best means to garner support from all sectors of society, including the private sector, to fight HIV/AIDS? Norway said that a human rights approach was not an easy fix as rights holders and duty bearers at many levels needed to be reminded of the importance of their rights. How could human rights instruments be used to secure the rights of persons who in many countries were regarded as criminals, including drug addicts, sexual minorities or sex workers? Algeria called for the respect of the cultural specificity of each and every country regarding sexual orientation. The Government had established 61 confidential testing centres across the country and medicine was available as a fundamental human right. The National Human Rights Council of Morocco said that the involvement of national human rights institutions was critical to combating HIV/AIDS and to placing human rights at the core of fighting the disease. Canadian HIV/AIDS Legal Network said that an overly broad criminalization of HIV non-disclosure, exposure or transmission had led to unjust prosecutions and convictions which in turn fuelled misinformation, fear, stigma and prejudice about people living with HIV. Member States should repeal any HIV-specific criminal laws. Conectas Direitos Humanos said that there had been a sharp decrease in the quality of public health services in Brazil. Persons newly diagnosed with HIV could wait for up to six months before having access to medical care and a series of supply failures in relation to antiretroviral drugs had occurred since 2006.

BIENCE PHILOMINA GAWANAS, African Union Commissioner, Social Affairs and Commissioner of the Global Commission on HIV and Law, said that she had heard speakers agree that progress had been made in addressing some of the challenges posed by HIV/AIDS. The question now was why there was a failure to respond effectively to all the challenges. The second issue was about strategies to enjoy full human rights by people living with HIV and human rights approaches to HIV/AIDS and what it really meant. This included access to medicines which was a huge issue everywhere, particularly in developing countries. Third, education was mentioned as well; if AIDS response failed, it was because education of Governments, health workers and judiciary had failed. What kind of education was now needed? Education should be targeted at power structures and those who were able to make a change?

MOYSES TONIOLO, National Network of People Living with HIV/AIDS, Brazil, said that the responsibility for controlling the AIDS epidemic was incumbent on States. They must guarantee the rule of law and social well being of their citizens. People with HIV/AIDS did not want charity, but full enjoyment of their rights. Brazil was striving for the respect of human rights and universal access to antiretroviral drugs and it was thanks to those policies that some 60 per cent of AIDS-related deaths were avoided. It was very important to make national efforts and promote positive laws that complied with human rights. Brazil promoted the whole notion of respect of human rights of the most vulnerable and each State needed to look at those groups in a sensitive fashion; homosexuals, sex workers, lesbians, drug users and others could not remain invisible. It was important to bring social pressure on Governments to support the initiatives to promote universal access to antiretroviral drugs, including starting the discussion in the World Trade Organization.

PAUL DE LAY, UNAIDS Deputy Executive Director, Joint United Nations Programme on HIV/AIDS, said there were five basic components to scale up treatment for people infected with HIV/AIDS. The first was the need for knowledge and awareness of when to get tested and how to stay on a treatment regime. The second was how to overcome discrimination and stigma that prevented individuals from accessing treatment. The third was to ensure equity in treatment. The fourth was cost and the need to address the issues of patents and generic drugs to reduce the cost of treatment. The fifth was the provision of other support services to complement medical treatment. Mr. De Lay said it was critical that these five areas cooperated and worked in tandem for people living with HIV/AIDS.

DMYTRO SHEREMBEI, All-Ukrainian Network of People Living with HIV, said countries needed to put civil society in a stronger position in the fight against HIV/AIDS. There was a need to stop the epidemic worldwide. Every country today knew the scientific reasoning of how antiretroviral drugs worked and understood that these drugs could play an important preventive role in the spread of the disease. A negative image had been put out about HIV positive people by the media and this must be changed; people’s lives should not be defined by a disease.

NONTOBEKI DLAMINI, International Community of Women Living with HIV/AIDS – Southern Africa, Swaziland said that women’s networks in Southern Africa needed financial assistance and backing to move cases where a violation or discrimination based on HIV/AIDS could be brought to court. Ms. Dlamini was working to document the experiences of victims of HIV/AIDS discrimination in Swaziland.

NICK RHOADES, Centre for HIV Law and Policy, United States, said on questions of criminalization that there were no need for HIV/AIDS specific laws which would only promote discrimination and stigma. They were not effective from the point of view of public health: they kept people from getting tested, kept them from accessing treatment, and increased negative societal outlook on people living or affected by HIV/AIDS. With HIV/AIDS laws in place, people were put in prisons for punitive reasons, to send an educative message to the society, and to protect the society from dangerous people. Societies needed common sense, integration of science in laws and taking care of the public as a whole.

Chile said that stigma was impeding access to care and the focus in the future needed to be on developing human rights based strategies that would also address the needs of vulnerable groups. United Nations Children Fund said that achieving an AIDS free generation was possible with the elimination of mother to child transmission, prevention of HIV among adolescents and scaling up access to diagnosis and treatment for HIV-affected children. United States emphasized that the 2011 Political Declaration on HIV/AIDS reaffirmed the importance of addressing the disproportionate impact of HIV/ADIS on women and girls and said that evidence-based public health interventions must be grounded by a respect for human rights in order to achieve goals in combating the HIV epidemic.

Kenya said it had made great progress in integrating a human rights perspective in AIDS programming and had established an Equity HIV Tribunal which provided access to justice for Kenyans facing stigma and discrimination because of their HIV status, particularly for women and girls. Sustainable HIV financing options for Africa were necessary and international support was critical. Russian Federation had a federal law protecting children living with HIV/AIDS and attached priority in international cooperation on the promotion and protection of human rights of people living with HIV/AIDS. Addressing HIV/AIDS was on top of health priorities in Georgia, which strengthened its legal framework for a rights-based approach to epidemics; Georgia was the first among the post-Soviet countries that had attained universal access to antiretroviral drugs.

Australia asked the panellists’ views on the benefits of the public health law approach over a criminal law approach to HIV transmission and exposure. Honduras asked what good practice was there in overcoming stigma and discrimination against people living with HIV/AIDS and what role could the Office of the High Commissioner play in supporting South-South cooperation.

Spain welcomed the very first Human Rights Council panel on HIV/AIDS, which was one of their priorities. It said Spain’s social pact to address the needs of HIV/AIDS sufferers was a key plank of its response to the disease. International Labour Organization noted the reference in the High Commissioner’s report to the need to address HIV/AIDS-related discrimination in employment and the world of work: 90 per cent of those living with HIV/AIDS were of a productive working age. Mexico said a national survey showed that three out of 10 Mexicans would not accept a person who had HIV/AIDS into their house: such prejudice was a real obstacle: what strategies adopted by States had proved the most effective in combating discrimination? France said tackling HIV/AIDS, which affects 34 million people worldwide, was a priority but said discrimination targeting people already made vulnerable by the disease should be the subject of universal and immediate rejection.

PAUL DE LAY, UNAIDS Deputy Executive Director, said the key human rights imperative was to maintain therapy for those who had it, and to secure it for those who did not. Dealing with that specific aspect would affect prevention, quality of life and survival.

NONTOBEKO DLAMINI, International Community of Women Living with HIV – Southern Africa said commitment from all countries was needed to ensure the rights of women living with HIV/AIDS were respected and protected.

NICK RHOADES, Centre for HIV Law and Policy, said people may be living with HIV/AIDS but they were still human and should be afforded the same rights. Mr. Rhoades commended the National AIDS Strategy passed by the United States. He said the United States prided itself on being a nation leading human rights and justice but it was far from perfect. The right to privacy, particularly of medical records, was just one key issue, as was the right to a Government educated in science that knew how to best use science to tackle HIV/AIDS. Furthermore, rather than criminalizing HIV/AIDS sufferers who posed little or no risk, Government budgets should be spent on healthcare.

MOYSES TONIOLO, National Network of People Living with HIV/AIDS, said all the scientific advice was discussed and debated and was well known to all. It could not be said that people did not know that HIV could be controlled, treated and that people with HIV/AIDS could live a normal life. It was important that countries made use of the United Nations AIDS Programme, so that cooperation could be established between countries and best practices were disseminated. That HIV was not something that could be spread in a social environment needed to be emphasized. People living with HIV/AIDS needed to have voices in the States they lived in.

DMYTRO SHEREMBEI, All-Ukrainian Network of People Living with HIV, said the global epidemic was a test for the whole world and for humanity of the ability to understand other people’s problems. Mr. Sherembei hoped that the world would overcome this and would not just wait for the epidemic to go away by itself. Resources needed to be increased. Without the global fund and other programmes, millions of lives could be lost. People needed to be given the right to live. Technology existing to date could ensure this and thus all efforts should be taken to promote and protect the right to life of persons living with HIV/AIDS.

BIENCE PHILOMINA GAWANAS, African Union Commissioner, Social Affairs and Commissioner of the Global Commission on HIV and Law, said it was obvious that States had the primary responsibility for ensuring the welfare of all citizens, including promoting and protecting their rights. Every citizen, regardless of their status, needed protection. Not negative laws, but positive laws were needed to promote, rather than hinder, the rights of people living with HIV/AIDS. Instead of making people living with HIV/AIDS invisible and thereby creating a situation of vulnerability, they should be made visible. Criminal law dealing with HIV should not regulate sexual behaviour. This prevented access and promoted stigma. An equity tribunal that advocated access to social justice for those deprived of their rights was something that needed to be encouraged. The disease and not the person should be focused on.

GULNARA ISKAKOVA, Vice-President of Human Rights Council, said the discussion showed that there had been progress on HIV/AIDS. However, there remained a number of human rights challenges that required further attention.

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