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Hard questions about HIV/AIDS

Though HIV/AIDS has generated more attention than any other healthcare issue in India, we’re still struggling with many basic questions. For example, do we really know the relative importance of the different means of HIV transmission? Does the focus on sexual transmission and injecting drug use shift the responsibility of prevention to individuals rather than the system? How can a prevention programme work if it is targeted at people involved in practices that are seen as illegal? Sandhya Srinivasan gives some answers

In the more than 20 years since HIV infection was first identified in India, there has been a transformation in the official response to it and, as a result, the way in which the public views it. We started with denial (“it can’t happen in India, we don’t have sex outside marriage”), moved to fear-mongering (“AIDS kills”), added prevention programmes that targeted certain groups and promoted stigma and discrimination (“you must have done something immoral to become infected, it’s up to you to protect yourself”), and included selected services such as treatment of sexually transmitted diseases. Prevention continued to be the focus of the second phase of the National AIDS Control Programme, with the prevention of mother to child transmission programme. Voluntary counselling and testing centres were introduced before there was any scope for treatment. Efforts were made to provide some kind of care and support, but without strengthening existing health services. Now there is an ambitious – given the quality of existing government health services – effort to provide treatment for a fraction of those needing it.

At the same time, there has been an information overload of sorts on HIV in India. This deadens us to the subject so we don’t always look for answers to important questions. Or if we have any doubts, we do not seek their clarification because we have no idea where to look or how to make sense of what is said. How significant is HIV as a public health problem? How should we tackle it? Are we going about it the right way? What hurdles do we face in this effort?

This information overload is most obvious in the numbers that are flung around, steadily climbing from 3.5 million in 1998 to 5.2 million in 2005, and now dropping to less than half that figure. India’s estimated HIV burden seems to be of great importance not only to us but also to the rest of the world – despite the fact that we know the surveillance system was not designed to provide such estimates. At the same time there is a running public tussle between NACO and international agencies on the estimates. On what basis did the US intelligence organisation conclude that India would have 20 million people with HIV?

The focus on numbers does two things: first, it is used as a reason to increase or decrease spending on the programme. But perhaps more importantly, by being presented in isolation (and by glossing over both the range of estimates and the limitations), HIV does not get integrated into the larger health scenario. So those who speak of vulnerabilities to HIV infection and access to ARVs are to a large extent distinct from those who speak of the socio-economic determinants of health, and of universal access to healthcare.

Related to this discussion of AIDS independent of other health issues is its discussion as a separate programme within public healthcare. Without in any way downplaying the factors that contribute to HIV transmission and the impact of HIV on already marginalised sections of society, we must ask why AIDS prevention and treatment is a separate programme. How can treatment and care for one disease be provided without proper integration into the healthcare system? Is there evidence of such integration across the country? And most important, why is there not enough focus on the health system itself?

The pressure to view HIV in this manner is directly linked to the overall pressure of international organisations to focus on individual components of health and health services rather than the conditions that lead to ill health as well as the need to have a comprehensive response.

One of the exceptions in all this is the coming together of nongovernmental organisations of all types to respond to the amended Indian Patent Act, which has major repercussions for access to drugs. In general, however, there has been little communication between those working with HIV/AIDS and those who view HIV/AIDS as a problem to be tackled within the health system. Even here the communication seems to be specific to availability of affordable drugs, not to their use within the health system.

How much confidence should we have in the National Family Health Survey estimate of the HIV burden? Does the National AIDS Control Programme represent skewed priorities for our healthcare system? Have things really changed for people living with HIV? Does the government drug programme reach the marginalised sections who are most affected, who have the least access to care? What happens when second-line drugs fail?

Do we really know the relative importance of the different means of HIV transmission? Does the focus on sexual transmission and injecting drug use shift the responsibility of prevention to individuals rather than the system? How can a prevention programme work if it is targeted at people involved in practices that are seen as illegal? Do we even know how to measure changes in HIV within a particular group, let alone explain the influences that led to these changes? How effective has the prevention of mother to child transmission programme been? Are the recent guidelines promoting provider-initiated testing for HIV justified? Should we require premarital testing for HIV? Do we need a law specific to HIV? How important is a vaccine against HIV, and where is the research going? What are the technical and ethical challenges in conducting vaccine trials?

InfoChange News & Features, January 2008