In India, HIV Destigmatization Desperately Needed

In India, the number of HIV infections may be substantially lower than estimated, but the country still has a huge amount of prevention and destigmatization to do.

A couple, in the northern state of India (Uttar Pradesh), adopted a three-day-old abandoned girl – a rarity in a country which with its regional neighbor (China) is gaining the ignominy of a nation where female infants are increasing abandoned by their parents or selectively aborted for want of a male child. But the real tragedy was to follow when the couple ‘returned' the child to the authorities after a medical examination found the AIDS-causing HIV virus in her. In all probability the baby girl was abandoned in the first place for the same reasons. Orphans of infected parents are often abandoned by the extended family and end up on the streets, open to all kinds of exploitation.

And that sums up the condition of children of positive parents irrespective of the fact whether they carry the virus or not. Children of HIV-positive parents (and often not positive themselves) are thrown out of schools across the country by uninformed and insensitive teachers and parents alike. With the state's machinery failing in raising awareness, parents conceal the positive status of their children not just out of fear of being thrown out of the school but also due to fear of the discrimination and taunts. Most positive children manage to attend school only by hiding their status. Yet the irony is that while this might enable them to gain admission and remain in school, it keeps them from receiving special measures that better protect their own health and in the long run, will prevent them from dropping out. Besides, sick parents not only are ill-equipped to be care providers for their children but it also means a loss of income and children, especially girls, are pulled out of schools to play the role of care givers and, in many cases, wage earners.

The teachers interestingly have been in the forefront of most of the sex education protests in the country. Unwilling to teach the course in the classrooms, these educators, wanting nothing to do with this curriculum – which in its own handicapped way attempted to create some sort of an awareness on the virus and other issues of sexual and reproductive health – have really been the major violators in this context. Books were burnt and with it the hopes of any space for awareness programs for young adults. Moreover, so great is the stigma attached to HIV/AIDS that many teachers who have participated and conducted the adolescent awareness program earned the epithet of the "AIDS teacher."

The good news is that the United Nations recently cut its earlier estimate of the number of people infected with the virus dramatically by more than six million, bringing down HIV cases around the globe from 39.5 million to 33.2 million.

The bad news is that the decline is mostly on paper. Much of the drop is due to revised numbers from India – which earlier this year slashed its numbers by half (from about 6 million to about 3 million) – and to new data from several countries in sub-Saharan Africa. With earlier surveys highly reliant on certain high-risk groups like drug users, sex workers and infected pregnant women at clinics, these were numbers contested by various groups in the country among them being the religious groups supported by the extreme right. The new numbers are the result of a new methodology like data gathered from household surveys rather from than blood samples taken at health clinics. Though expensive, household surveys reach remote rural areas and represent the general population better while samples at clinics tend to over-represent pregnant women who have been prone to infections at a disproportionately high rate. Yet again, like the problem with the earlier method, the household surveys tend to miss high-risk groups such as prostitutes, homosexuals and intravenous drug users.

But what really makes the situation look bleaker is that it vindicates those who for long have accused the UN of deliberately inflating figures worldwide to make the epidemic appear more widespread than in order to appeal to donor nations for more financial support. But in countries like India that's not all that there is to it. This poses a very serious challenge to the entire campaign to contain AIDS in the country considering that many of the strategies were hinged on providing awareness on safe sex and condoms. Condoms for long, in particular for the extreme right and religious based groups, have been the peg to attack the AIDS campaign as a western construct and not conducive to the Indian culture. And the accusation of falsely inflated AIDS cases to push their own propaganda have been one of the very strong and oft used arguments by these same groups constantly attempting to negate the HIV epidemic. This new information on the actual error in numbers is bound to put the spanner in the work of many groups who have had to constantly work against the tide to bring about some very real changes in the attitudes towards AIDS.

The truth is that even with the revised figures the numbers are still on the high side. Worldwide, 6,800 people are newly infected and another 5,700 die each day. Three million people in the country still carry the scars of the virus socially, economically and physically.

With both national and global agendas constantly changing the money coming in towards these strategies also changes and the real fear that remains is that will this automatically also mean a re-allocation of funds meant towards containing and working towards healthier and longer live strategies for positive persons and their families. Will donors see these new estimates as reason to relax their response on AIDS? That would be a tragedy far more disproportionate to the error in the data on positive people.