On October 9th the Parliamentarians’ Forum on HIV/AIDS (PFA) declared that HIV testing will be made mandatory for all pregnant women. They said that passing HIV from mother to child was a human rights violation and that for a generation that is free from HIV, this needs to be done.
Making the test compulsory raises hopes as well as questions. On the positive side is the fact that if the HIV status of the mother is known, the delivery can be made safer for the mother, the child and the health worker. Up to 40% mothers with HIV transmit the disease to their children without being aware of having HIV. A child has a 25-45% risk of contracting HIV during delivery from its mother, which can be brought down to under 2% if adequate precautions are taken and the mother is treated.
The most important question it raises is that of a woman’s right to autonomy. This is closely linked to the fact that in spite of the male partner being the source of HIV in majority of the cases, women are the ones who have to bear the brunt of the social stigma and abuse. Even though as per guidelines, the person getting tested for HIV has absolute rights about who gets to know about the result, in practice this rarely happens. Privacy and autonomy are alien to our culture, as a result of which chances are that if you are diagnosed with HIV in a typical Indian hospital, everyone from the ward-boy to the sweeper knows the results. There is no doubt that making this test compulsory breeches the fundamental dignity of women, and makes them vulnerable to the anger of their families.
It must be kept in mind that in many states in the south, all pregnancies followed up in government hospitals are already screened for HIV and Hepatitis B under the RCH scheme. But there is a big lacuna in this scheme and that is the home deliveries. Depending on the state and region of the state anywhere from 25-50 percent of children are born in homes, with no access to a doctor. The PFA has suggested that leaders at village level be involved in ensuring they are screened. This might be a good way of reaching health care to the most interior places, but it is obvious that this is going to expose women even more to hostile forces. Unless the forum comes up with a unique way of ensuring privacy while maximizing health care cover, such a drastic move is going to adversely affect lakhs of women.
While the intentions of the PFA are good, and their science is accurate, they fall short in keeping the ground realities in mind. One of the ways they can do better is by involving grass-route level organizations that work in the HIV/AIDS field. Also, there needs to be public debate about medical issues in the country. It is sad that the media and other sources are mostly silent, and even when this is a decision that will affect millions of our countrymen, there is a pitiable lack of public interest.
In the end the decisive question is whether protecting the unborn from a preventable disease outweighs the risk of ostracism and the moral duty of respecting women’s autonomy.