What has defined the response to the HIV crisis since its outbreak is an unprecedented community mobilization and involvement.
It was the advocacy of a rights-based strategy by communities that led to a paradigm shift among governments from the standard public health response before the advent of HIV to one that looked at access to medicines as a right for persons living with HIV (PLHIVs).
When HIV broke out in the US in 1981 and later in other parts of the world, governments came up with a response seen in previous epidemics: isolation, breach of confidentiality and discrimination—essentially an isolationist response. Countries even enacted laws on that basis.
In India, Goa legislated an isolationist law in 1987, just a year after the first victim, Dominic D’Souza, was identified. He was tested without consent and on reporting positive, was not informed of it. He was isolated in a tuberculosis sanatorium, where the staff served him food from a distance, afraid of contracting HIV. His confidentiality was breached for the world to know his status.
D’Souza’s mother challenged his detention before the Goa bench of the Bombay high court. The court upheld the law in 1988-89, saying it would not interfere with the legislature’s prerogative.
First battle won
The Union government made several attempts to enact a similar isolationist law. But by the early 1990s, the HIV community had organized itself and was able to resist it.
That was the first battle won—not to subject PLHIVs to an isolationist regime. But the battle for a rights-based approach went on for a long time.
There was no treatment for HIV then, which came only in the late 1990s, and the paramount battle was fought for rights of PLHIVs. It was quite clear from the way HIV had spread—originally in the US from white, upper-class, male homosexual to heterosexual, non-white, increasingly women—that transmission had more to do with disempowerment than only the peculiar characteristics of the virus.
Moreover, there was disproportionately high prevalence among marginalized groups— sex workers, injecting drug users and men having sex with men. Therefore, it was critical to empower those who were infected and those at high risk of contracting it.
Michael Kirby—an Australian high court judge active on this front since 1982, had put it this way: “Paradoxically enough, the only way in which we will deal effectively with the rapid spread of HIV/AIDS is by respecting and protecting the rights of those already exposed to it and those most at risk.”
Fortunately, there was anecdotal evidence over 1993-98 from Sonagachi in Kolkata to suggest that empowering sex workers—who would then negotiate safe sex with scaled-up condom use—would impede transmission. This was later validated by studies published in the Lancet journal showing that empowering sex workers thus would, in turn, lower new HIV infections in housewives.
On issues of consent for testing, confidentiality and non-discrimination, to which the medical fraternity had only paid lip service, there was debate on how to implement these rights in India. A norm was established by the 1992 HIV testing policy that no person would be tested for HIV without her informed consent or without pre-test counselling followed by further counselling after the test.
It was the forming of PLHIV networks that marked an important milestone. Patient groups started forming in India in 1994-95, following a movement that started in other countries in the late 1980s. These networks have now sunk roots across Indian districts. Thus, when the Supreme Court in the late 1990s decided PLHIVs cannot marry, the HIV community mobilized to overturn the verdict in 2001.
The first study that focused on the dimensions of the epidemic in Asia—the 2008 Asia Commission headed by former governor of the Reserve Bank of India C. Rangarajan—has upheld the rights-based model, arguing that the rights of marginalized communities need to be protected to avoid further spreading of the infection. The commission recommends “focused and scaled up interventions towards unprotected commercial sex, unprotected sex between men and the sharing of contaminated needles and syringes”.
Access to medicines
In the mid 1990s, it was found that instead of using only one antiretroviral (ARV) drug, a combination of three ARVs would bring the HIV viral loads to undetectable limits. A PLHIV could then virtually lead a normal life. ARV treatment is a cocktail of drugs that reduces HIV’s ability to damage the immune system.
Until then, a positive HIV test result meant an early death sentence. The problem was that the drugs were very expensive, around $10,000 (Rs4.87 lakh now) per person per year. Most people in the developing world, where majority of HIV-positive people lived, could not afford them.
Ultimately, the right to access medicines became possible with the global mobilization that accompanied the famous South African lawsuit in 1999. The activists’ demand was that any person who is HIV-positive and needs treatment, which is otherwise available, cannot be denied treatment irrespective of whether the PLHIV is living in the West or in a developing country, and irrespective of the cost.
It was when Indian drug maker Cipla Ltdoffered the triple combination therapy for $350 in 2001 for per person per year that prices came tumbling down. Cipla could do this because India’s previous patent law had enabled its generic industry to produce the cheapest drugs in the world.
Even this did not make them affordable enough for developing countries. The international community then came up with the 2000 Global Fund for AIDS, tuberculosis and malaria (GFATM)—a paradigm shift of historic proportions.
Not only had activists set the norm that PLHIVs had a right to be treated, they also forced the international community to set up a fund for the purchase and delivery of ARVs.
This also had a positive impact on the Indian government. Activists were already arguing there was no reason why the government should not introduce the first line of treatment for its PLHIVs by purchasing Indian generics when they were being supplied to Thai, Brazilian and South African governments. India announced free ARV treatment on 1 December 2003 and introduced it on 1 April 2004. The first line of treatment is now provided to around 180,000 PLHIVs in India, mostly financed through GFATM.
A key issue in ARV treatment is that the person must be counselled to take the drugs daily, failing which resistance sets in and leads to the need for second-line drugs, which are 10 times more expensive. Money spent on counselling is worth it as it avoids spending later on expensive drugs.
The government has recently responded to activists’ demand and started the second line of treatment at 10 centres. But that’s just a small beginning. For the third line, again, most drugs are likely to be patented. Unless the government takes radical measures, which are politically sensitive, HIV activists will have to again dig their heels to demand their rights to health and life.
1984 • Dr. Robert Gallo in the US identifies HIV as the cause of AIDS.
1985 • At least one case of HIV reported in each region of the world.
*The Indian Council of Medical Research establishes an AIDS task force.
1986 • The International Steering Committee for People with HIV/AIDS is created, which later becomes the Global Network of People Living with HIV/AIDS (GNP+).
* The first case of an HIV positive person is reported in India.
1987 • Africa’s first community-based response to AIDS is formed in Uganda.
* India launches the National AIDS Control Programme (NACP) with focus on increasing awareness, blood screening for HIV and testing of individuals indulging in risky behaviour
1988 • The International AIDS Society—an organization of professionals working on HIV/AIDS—is founded.
1991 • The global network of non-governmental and community-based organizations—International Council of AIDS Service Organization (ICASO)—is formed to mobilize communities and their organizations.
1992 Indian government launched the first National AIDS Control Programme (NACP-I) with an International Development Association credit of $84 million.
1994 • At the Paris AIDS Summit, 42 nations declare that the principle of greater involvement of people living with HIV (GIPA) is critical to ethical and effective national responses to the epidemic.
1996 • Brazil becomes the first developing country to provide anti-rectoviral therapy (ART) through its public health system.
1997 • With the support of UNAIDS, the first public ART programme in Africa, the Drug Access Initiative, is launched in Kampala and Abidjan.
1998• Thirty-nine pharmaceutical companies file a lawsuit against the South African government to contest legislation aimed at reducing the price of medicines.
1999• The UN launches the International Partnership against AIDS in Africa to bring together stakeholders to mount an intensified response to the epidemic.
2001• The World Trade Organization adopts the Doha Declaration, allowing for wider access to HIV treatment through generic drugs.
2002 • The Global Fund to Fight AIDS, Tuberculosis and Malaria becomes operational and approves the first round of grants.
2005 • At the G-8 Summit in Gleneagles, Scotland, leaders pledge to come as close as possible to universal access to ART worldwide by 2010.
• Prime Minister Manmohan Singh establishes the National Council on AIDS.
2008 - At least 50% of HIV positive Indians who need first line ART are not getting it
Source: UNAIDS & NACO
Anand Grover, a practising advocate in the Bombay high court and the Supreme Court of India, is the special rapporteur on health, appointed by the UN Human Rights Council, and the director of the Lawyers Collective HIV/AIDS unit.