HIV-positive women defy the virus

MUMBAI: They tested positive for the HIV virus over a decade ago, but refused to accept it as a death sentence.
Today, these women are a living testimony to the fact that HIV-positive persons can live well and long, given the right support. The so-called AIDS epidemic in Mumbai, it seems, is not following its predicted course.
“Over 90 per cent of our patients are healthy, many for the past 10 to 12 years,’’ said Nagesh Shirgoppikar, a medical consultant at the Salvation Army’s AIDS clinic in Mumbai.“If we can see them through the next three to five years, we will be able to show that even without the AIDS drugs (Anti Retro Viral Therapy), Indians who test HIV-positive and receive the right combination of care, can remain asymptomatic and do very well.’’
A group of 12 women, who had lost their husbands to AIDS, took time off from their tailoring class last week to share the secret of how they remain “long-term non-progressors’’ as they’re know by medical experts.
Set up in 1995, Salvation Army’s clinic regularly follows up on around 600 HIV-positive patients, providing them a range of services, including tailoring classes in an effort to make them economically independent.
The AIDS widows are candid about their husbands, who, they believe, passed on the virus to them. They believe it was not AIDS that led to their husbands’ early demise, but their addiction to alcohol, gutka or cigarettes coupled with a careless attitude to medication, and failing to adopt changes in their lifestyle.
They extend this logic to their own situation. When they were declared as HIV-positive (through a single Eliza test), their vulnerability to infections such as cold, cough, fever, diorrhea and dizziness increased. They also suffered from weight loss.
But the women believe that their physical vulnerability was more an outcome of their tension, fatigue after caring for their sick husbands and economic burden rather than AIDS-induced infections.
According to Lata, who was diagnosed HIV-positive 12 years ago, “It took us around two to four years to come to terms with our HIV status. We needed time to work out the anger we felt towards our husbands, the rejection of our families and to think quietly about how to deal with the fear.’’
Counselling gave her hope. She came across the Salavation Army’s AIDS clinc where all her questions about AIDS were answered, and got access to good doctors whose detailed and regular check-ups caught infections early.
She also found a support group of sorts among women with similar afflictions. Thereafter, a “positive attitude’’ became the buzzword in their lives, she said. Lata and other women have learnt in the past decade that it is important to take care of their health. Sharda, another of this group, says that she does not eat out and carries her own drinking water whenever she goes. This has greatly helped in reducing bouts of diarrhoea, cold, cough and fever.
The group members are no longer careless about medication, and do not sit alone and mope at home. If they cannot find paid work, they volunteer for service to other AIDS patients.
“What kills people is the lack of hope, tension, the absence of family and social support and our economic plight. With all other illnesses, even TB or cancer, everyone wants to help and support. HIV, this one word, makes everyone turn away. At this time, if you find even one person who can help you stand on your feet, you have a chance,’’ said Sharda.
Too proud to beg refuge in their parents’ homes, and shunned by their inlaws, these women are determined to fend for themselves, but it extracts a heavy price. One of them has been forced to put her two children in a staterun home for a year as she cannot look after them. Their diet primarily consists of dal and rice. Seasonal fruits and leafy vegetables that they desperately need to eat are a luxury they can ill-afford.
While innumerable studies point to the vital role nutrition plays in supporting the health of HIV-positive patients, the mega bucks spent in the name of AIDS has never reached them for even this basic need.
The Salvation Army’s efforts to help these women stand on their own feet is bearing fruits. The first batch of ten women will soon complete their tailoring module and a businessman has promised them their first order. The AIDS widows say that addressing some key issues would make a difference in the care and support of those afflicted.
One is ensuring access to TB drugs through the DOT centres—the problem here is that lack of motivated health staff and their constant absenteeism forces patients to miss out on medication routine. The second is the presence of well-trained doctors, particularly in the rural areas.
At present, patients need to make trips to the city for consultations on tratement. The third is security for their children and organisational support in solving legal and other disputes with family members.