FACING DOWN THE UGLY POLITICS OF HIV/AIDS: WHAT ROLE FOR HUMAN RIGHTS GROUPS AND OTHER NGOS?
Joanne Csete, Human Rights Watch

It is a challenge to me to know how to structure a discussion of AIDS-related human rights abuses in the world when they are so many, so varied and so interconnected. I don't know if it helps to list the categories of abuse that human rights groups and AIDS NGOs have been contacting us about and that we ourselves with many NGO collaborators are trying to document and address. These overlap a great deal; they are not as discrete as this listing will make them seem. As I list these, you may wish to think about how relevant they are to the situation in your countries. They are:

• Discrimination and abuse faced by traditional "high-risk groups" (injection drug users, sex workers, men who have sex with men, migrant workers, etc.)
• Subordinate status of women and girls (rendering them unable to control the terms of their sexual lives, often combined with laws and polices forcing their economic dependence on their husbands or other men that keeps them in marriages they might otherwise leave)
• Sexual violence and coercion, including sexual violence as a weapon of war (which we have investigated in the Congo war)
• A horrific range of abuses against prisoners
• Discrimination on the grounds of HIV status (including many instances of legal discrimination embodied in national law)
• Immigration law and practice that limits people's entry into countries if they are HIV-positive (for which there is no public health justification)
• Criminalization of HIV transmission and other criminal law issues
• Compulsory testing and a wide variety of confidentiality and right to privacy issues
• Censorship and other violations of the right to information and free expression, including crackdowns against AIDS educators
• A wide range of violations of the rights of orphans and other children affected by AIDS
• Access to treatment and care.

Those of you in the audience who are students of human rights will know that that last one on access to treatment would fall into the category of economic and social rights rather than the civil and political rights that make up the rest of the list. We should note, though, that access to treatment is related in important and direct ways to people's ability to realize their civil and political rights, including through reduction of the discrimination associated with overt illness.

How has this wide range of violations been allowed to persist? Human rights violations thrive for many reasons, but I think in the end the most important ones are political in a strict sense. In this case, the politics of HIV/AIDS has many ugly aspects. It is, first, a politics of denial - the very nature of the virus and its epidemiological course give politicians and policy-makers a window of denial that they readily take advantage of. A window, most sadly, that sets the epidemic up for the enormous mortality that becomes so hard to put the brakes on, especially in the absence of access to antiretroviral treatment. It is a politics of cowardice as most politicians in the world are not courageous about diving into any area in which the day-to-day struggles involve working side by side with gay men, drug users, sex workers, prisoners and others affected by AIDS. The politics of HIV/AIDS is also a politics of elitism and racism. As I suggested earlier, one of the main reasons the global AIDS epidemic took so long to find a place on the global stage and still does not have priority in global resource allocation is that it was brushed away as an "African problem". Moreover, in the world outside Africa, it is, in my experience, hard to find a policy-maker who readily embraces the idea that there are lessons to be learned from Africa. And within Africa and Asia, in spite of decades of dense and earnest rhetoric on the benefits of participation and participatory approaches, it is equally difficult to find policies or programs that take their real cue from the experiences of uneducated and poor and socially marginalized people.

As we all know too well, the politics of HIV/AIDS is a politics of moral judgementalism, in that the apparently growing political influence of religious fundamentalists of all kinds has unspeakably terrible consequences for HIV/AIDS. The power of religious extremists, once again, has hardened support for sodomy laws, has galvanized support for cruelly repressive drug laws, and has gone to great lengths to keep women and girls in subordinate roles. The influence of religious fundamentalists in the US, for example, is making it more and more difficult to bring basic information on HIV transmission to young people as a federal government heavily influenced by these fundamentalists is pushing comprehensive sex education out of the classroom in favor of "abstinence only until marriage" programs. These programs explicitly fail to inform young people about the effectiveness of condoms in preventing HIV transmission and focus on sexual abstinence as the only solution to HIV/AIDS.

How do we begin to address such a wide range of abuses? It is useful, first of all, to recognize that in the history of the HIV/AIDS epidemic, the successes in combating the disease (too few certainly) have largely been driven by civil society. NGOs, especially groups of people with AIDS and those who face high risk of HIV transmission, have tended to be far ahead of governments in advancing the policies and programs that have resulted in palpable reductions in transmission or in better access to treatment and care. This is a difficult message for Central Asia where civil society was for so long not allowed to flourish and there is a lot of catching up to do.

Human rights organization have built and continue to build a record of achievement in the revion, and HIV/AIDS and harm reduction groups are growing in some countries in numbers and capacity. But these need to come together - that is, human rights groups on the one hand and HIV/AIDS and harm reduction on the other. The human rights movement, including my own organization, has been slow to come to HIV/AIDS issues with its full research capacity and advocacy voice. HIV/AIDS groups use the language of human rights but often need help exploiting most effectively the tools and mechanisms of human rights. I am happy that Human Rights Watch and the Open Society Institute are in discussion about how this kind of collaboration might be facilitated in Eastern Europe and Central Asia.

But that's the civil society side of the picture, and in the end not much will happen unless government and civil society are open to some degree of interaction. I was happy to hear in Dr. Kirichenko's interesting presentation earlier that this interaction is beginning on HIV/AIDS issues in Kyrgyzstan. In Kazakhstan, things are also happening. We spoke with one government AIDS center director over tea in the home of the director of a group representing men who have sex with men, for example. I have worked on HIV/AIDS in a lot of countries, and there are plenty of places where this still couldn't happen. Discussing the perils and potentials of civil society-state interaction in this area is beyond the scope both of my competence and of this talk, but I would like to suggest a few areas where collaboration will be very useful in the continuing struggle against AIDS in the region.

Review of laws and policies in light of the exigencies of combating HIV/AIDS is a crucial area that will be most effective if NGOs are involved. Kazakhstan is to be congratulated for initiating this kind of process, and many countries will be following that experience closely. The issues are quite clear, and the U.N. Guidelines on HIV/AIDS and Human Rights as well as the Legislators Handbook that goes with them and a number of other resources are available to use in such a process. A number of legal reform exercises that we have followed have resulted in useful changes to the law that have improved the environment for fighting AIDS. Our time in Kazakhstan was a reminder of how important it is to devote attention and resources not only to revising the law but also to implementation and follow-up. I am reminded of the observation of one author from India that too often passing laws is like passing water - it all winds up down the drain….that is, if there is not enough attention to implementation. It was exciting to be in Kazakhstan when Dr. Erasylova announced the ground-breaking change in the policy of mandatory HIV testing of all persons in detention in the country, which, as Marie Struthers mentioned earlier, would effectively eliminate the segregation of HIV-positive persons in the prison system. One doesn't expect a policy like this to be implemented overnight, but we hope the resuorces will be there to see this policy through to full implementation, especially in the pre-trial detention system. This is something that will also certainly be watched worldwide.

Another area crucial to HIV prevention that I think is an important one for government-NGO collaboration is the design and implementation of information campaigns and educational curricula on HIV/AIDS. How often do we see messages that include dark images of drug users and sex workers that are so demonizing that all they are missing is horns and a tail? We have to be careful that information and education campaigns don't feed stigma, that somehow the idea of the dignity and rights of everyone comes through. I believe this is best achieved by including persons at high risk in the process of designing information programs. Often the first step governments try to take, with the best of intentions, in "reforming" the image of the drug user is to encourage people to think of drug users as people with an illness, people who are sick. A high-level police officer in Kazakhstan explained to us that this idea of drug users as sick people is central to the "humanization" of drug policy in the country and that police are being trained to regard drug users as sick. This is certainly an important step forward from thinking of drug users only as criminals, but, at the risk of stating the obvious, I would note that labeling drug users as "sick" is not necessarily conducive to reducing discrimination against them and may constitute replacing one kind of discrimination with another, perhaps more benign. (This is especially the case if services are not provided that correspond to the idea that drug users have an illness that needs to be treated.) Again, it would be nice to see campaigns that not only do not criminalize people at high risk of HIV transmission but promote the idea that drug users have rights and deserve respect. This is not easy, but it's possible.

Another hard policy discussion that I think would benefit from inclusion of NGOs is the matter of antiretroviral treatment. As Marie noted, we found that in Kazakhstan the idea is widely held that drug users are not deserving of antiretroviral medicines. In an epidemic where 80 to 90 percent of persons with HIV/AIDS are injecting drug users, one would have to look hard for a more self-defeating policy. We know that this discussion will intensify throughout the region as more affordable antiretroviral drugs become available, as most people expect will happen. There is not adequate time in this talk to review the extensive body of research literature indicating that compliance with antiretroviral and other treatment protocols among active injecting drug users is as good as that of other people. But I hope that it will be possible to enter this discussion with the knowledge that banning antiretroviral medicines from drug users , aside from bring questionable from a public health point of view, is discrimination, pure and simple.

A particular action that I would also mention has to do with ratification of key human rights instruments. The part of international human rights law that deals with due process, fair and prompt trials, protection from arbitrary arrest and such crucial matters as the right to information and free expression is called the International Covenant on Civil and Political Rights. When a country ratifies this instrument, it becomes party to a treaty and sends a strong message of some level of commitment to these ideals. In Central Asia, every country but one has ratified this treaty, and we encourage our colleagues in Kazakhstan to join their neighbors as parties to this important law. It is tempting to think that ratification of such treaties doesn't mean much in practical terms, but in other parts of the world, it has been seen that even just the process of debating ratification in parliament, especially where NGOs are included, is important to opening the minds of policy-makers to think about protections of the rights that are so closely related to a state's ability to fight HIV/AIDS.

One final area I would mention where NGOs and governments may usefully work together in combating AIDS is the matter of understanding the real extent of the epidemic in a country - getting the numbers. I look forward to the day when I can hear a presentation on the epidemiology of HIV/AIDS in Central Asia where someone says "here are the official numbers of persons living with HIV/AIDS and they represent the real situation" rather than "here are the official numbers - multiply by ten" or "multiply by six". It is true that groups at high risk and people with AIDS can find surveys threatening, but the experience of many countries has shown that if these persons are approached respectfully, they can be important allies in helping to accomplish good surveillance of HIV prevalence. It is in everyone's interest to know the real extent of the epidemic - obviously an essential matter for program planning and evaluation and for dealing with donors - and communities of persons at risk need this information as much as governments do. Repressive approaches to surveillance are as counterproductive as in any other domain of HIV/AIDS; working in collaboration with persons living with the disease and persons at high risk can yield good results. Kazakhstan is beginning to do this, and others will be interested in that experience.

I hope it will be possible to find many exmaples from Central Asia in the coming years of ways in which governments and NGOs, including human rights NGOs - if not always hand in hand, at least in discussion with each other - will find ways to confront and change the worst aspects of the politics of HIV/AIDS.