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Women at the receiving end of HIV
Thirty years ago this month, the world discovered HIV/AIDS. TOI-Crest speaks to Dr Suniti Solomon who, along with her colleagues at Madras Medical College, detected the first cases of infection in the country in 1986. Now founder-director of a HIV/AIDS care and support centre in Chennai, she talks about the gloom and despair of the initial days, and the challenges of the future
You detected the first cases of HIV in the country. What was the experience like?
I was working in Madras Medical College as a professor. I asked one of my students to work on whether there was HIV infection in India. We started with samples from sex workers. The Elisa test was not easily available so we sent the samples to Christian Medical College, Vellore, as they were part of an ICMR effort in looking for HIV infection. Of the first 100 samples, six samples, all from women aged between 20 and 30 years, tested positive. The Director General of the Indian Council of Medical Research suggested we reconfirm and we tested again. All six were again positive. We then sent the samples to Johns Hopkins University in the United States as there was no facility for the confirmatory Western Blot test in India. The results were confirmed again. This happened in April 1986. It was announced in the Tamil Nadu Assembly as well as in Parliament. I thought everyone would congratulate us. But instead of flowers, we got brickbats. Everyone was upset, asking us why we had looked for the infection.
How have things changed after the initial years of panic and despair about HIV in India?
Initially, there was a lot of panic. I remember the manager of a Chennai bookshop suggesting that the women who had tested positive be locked up to prevent the infection from spreading. In Mylapore in Chennai, where the remand home housing the women was, there were fears of the infection spreading through mosquito bites. We have come a long way since then. There is a lot of awareness but even today I get questions like whether the infection would spread by drinking from the same glass!
Do you think the huge increase in awareness about HIV/AIDS has slowed the spread of the infection?
Yes, there is a definite slowing down in the spread of infection in the last 10 years. New infections have dropped by 50 per cent. With a change in the method of estimating HIV numbers in India, the figure fell from an alarming 5. 7 million to just half that, 2. 3 million. That has resulted in some relaxation of vigil, but with a disease like HIV there is no room for complacency. We need to continue the awareness programmes especially to fight HIV stigma. It is just a chronic disease. We have excellent drugs, but the stigma is killing people.
How alarming is the feminisation of HIV/AIDS in India?
Primarily, women are at the receiving end of HIV in India. Of 16, 000 patients at our centre, 40 per cent are women and among them, 80 per cent got the infection from their husbands despite the woman having a single partner. The message that you get HIV if you have multiple partners is not applicable to these women. The men get infected first, get married and infect the wife. The husband insists they have a child even if he is HIV positive. The stigma of being barren is greater than the stigma of being HIV positive. When the husband gets sick, the woman has to take care of him, the family and yet the in-laws always blame the woman. And when she becomes a widow she is thrown out by her inlaws and cut out of the property.
How have things become better for HIV positive people in accessing healthcare?
The best thing that has happened is generic ARV drugs. Earlier, imported drugs cost us Rs 35, 000 per patient per month, but now it is just Rs 800. We should be grateful to the Indian pharmaceutical industry for making this possible. Patients usually go on to ARV drugs only when their immunity comes down. If detected early and taken care of, patients can lead a good quality of life for many years. People at risk should be encouraged to test themselves to detect the infection early. Our longest surviving patients are a husband and wife, both HIV positive, who came to me in 1987. Their two-yearold child who was HIV positive died. But the couple is doing very well. The man has not gone on ARV even after 24 years. We have quite a few patients who have been doing well while living with the infection for 16 or 17 years.
What is the biggest challenge now in tackling HIV?
We need more government centres providing ARV drugs and treatment free of cost. There are 300 such centres now. Despite high awareness, doctors and hospitals still refuse treatment out of fear of infection. In Chennai, many hospitals bundle off HIV positive patients to our centre. If universal precautions are taken when treating patients, there would be no risk. Drug resistance too is a growing problem as people don't take drugs regularly and on time. This makes the virus resistant. That means the person will have to move to the second line of drugs which is very expensive. The cheapest second line drug costs Rs 5, 000 per month compared to less than Rs 1, 000 for first line drugs. That is why it is more cost-effective to spend on counselling of patients to ensure that they stick to the prescribed drug regimen. We cannot make the newer drugs in India till the patents on these drugs expire. So these drugs will continue to be very expensive.
In your decades of work among people with HIV, is there an incident that stands out in your memory?
It is the HIV positive children who really touch my heart. Of 700 deliveries our centre has carried out only two per cent of the babies were HIV positive because we take all precautions such as giving ARV drugs, doing elective Caesarean and helping with formula feeding to prevent the infection from being passed on from mother to baby. We have seen 800 HIV positive children. They are so innocent, they suffer for no fault of theirs. The most heartbreaking moment is when you have to reveal to a child his or her HIV positive status. I had to tell a 17-year-old girl that she was HIV positive. About two years ago, when her mother died, she stopped taking drugs. She was beginning to lose her vision. She came to our centre with a bouquet of white and pink roses she had made before she fully lost her vision. Two weeks after that she became blind and just two months ago, she died. Everyday there are such incidents. My job is not just to provide medical treatment but also to sort out the various problems of people who come to the centre.
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