Sometime in 1995 one was invited by the American Center Library in Delhi for a video conferencing with a young American doctor of Indian origin, Dr. Abraham Verghese on his maiden book “My own country”. The author spoke to us, a group of journalists and activists sitting in Delhi. And there was a question and answer session with the doctor. The book was about how, HIV / AIDS, then considered an urban problem had surfaced in the-non descript, remote, sleepy town of Johnson City, “nestled in the Smoky Mountains of eastern Tennessee’. It was in August 1985 that the first AIDS patient was seen and Dr. Verghese, specializing in infectious diseases, by necessity became the local AIDS specialist. The book has a poignant description in first person how “In the early evening of August 11, 1985, he [the patient] was rolled into the Emergency Room [ER] of the Johnson City Medical Center –the “’Miracle Center”, as we referred to it when we were interns. Puffing like an overheated steam engine, he was squeezing in forty-five breaths a minute. Or so Claire Bellamy, the nurse, told me later. It had shocked her to see a thirty-two year old man in such severe respiratory distress.”
That was Dr. Abraham’s first AIDS patient. The book became a best seller, which Perri Klass, in the New York Times Book Review called, “Remarkable… an account of the plague years in America… Beautifully written, fascinating and tragic by a doctor who changed and shaped by his patients.”
Well, this column is not about that book, but on how we in India also went through our own “Plague Years”. As we just observed this year’s World AIDS Day on December first [last Saturday], it is worth asking whether we still are in the grip of the dreaded scourge. Are we still mortally scared, steeped in ignorance, misgivings, taboos, judgmental and continue to ostracize hapless victims of the disease? Surprisingly on this AIDS Day there weren’t much VIP ‘infested’ events and programmes and any ad blitz in the media unlike what used to happen in our own ‘’Plague Years” in the 1990s and for some more years of the new millennium.
After the first few cases of HIV/AIDS cases were reported in India, suddenly a virtual situation of panic emerged in our country. Media, especially the print media suddenly became health or rather disease conscious. Initially the tendency was to highlight ‘risk groups’ and all of a sudden commercial sex workers [CSW], intravenous drug users, long distance truck drivers, professional blood donors were ‘targeted’ by the media. As a response in panic, there was a surfeit of campaigns and the initial campaigns disseminated information which according to some communication experts, lacked clarity and created unnecessary scare. People who came in the ambit of one or the other ‘’risk groups’’ trembled in mortal fear. Some of them were heard asking questions to experts at seminars and awareness programmes whether one of their friends [not of course they themselves!]who had extra marital relations or visited red light streets were at risk of contracting the deadly virus!
It took some time to shift the focus from risk groups to risk behavior. Everyone was at risk whichever group one belonged to if there was risk behavior. A couple of films, a series of radio programmes and a number of articles published in different newspapers gave one an opportunity to have a proper understanding of a virus called Human Immunodeficiency Virus[ HIV] and a syndrome called Acquired Immunodeficiency Syndrome[AIDS]. The difference between a disease and a syndrome was a revelation then. A disease is ”a patho-physiological response due to internal or external factors whereas a syndrome is a collection of signs and symptoms associated with a specific health- related cause”.
For the production of the radio series and films, one travelled extensively; first to find out the key areas which were ground zero for ‘’risk groups’’. Initial research had revealed that the main risk groups were - professional blood donors, intravenous drug users, long distance truck drivers, CSWs etc. Visits to drug de addiction centers in Manipur, Chennai, Goa, Mumbai and Kerala, red light areas with NGOs working with CSWs in cities like Mumbai, major centers for the truck industry like Namakkal in Tamil Nadu, prominent truck congregating places like Mamandur near Madras and Jaipur, medical wards in a number of medical colleges and hospitals and AIDS Surveillance centers across the country were learning experiences. Interviews with prominent experts and activists like the late Dr. Suniti Solomon of Chennai,[ who is credited to be the to discover the first cases of the infection] were fantastic inputs and first hand information for one’s media products.
Some of the people one met and their stories were heart rending. They reflected the suffering of the victims, rejection, taboo, ostracism lack of awareness, acceptance and compassion, false notions and fears on the part of people at large. How will you react to the story of a young widow in Tamil Nadu [whose husband, a truck driver who also owned a couple of trucks]was hounded by the society when her name was revealed by the press. Later she visited wedding halls and asked the bride on the stage whether she had an HIV negative certificate of her groom!
What about the new born baby [of a CSW who died] thrown in a dust bin, picked up by an NGO who in turn handed over the baby to a children’s home. When medical examination revealed that the Baby was HIV positive, they returned the baby to the organization that picked up the baby from the dust bin. During our shoot, the baby was not in Mumbai but was in a children’s home near Pune. We went to that home to find the infected baby being looked after by the couple who took care of the home. They looked after the infected baby at their residence along with their own three children. How many us would keep a HIV positive child in own homes?
One was sitting at the bed side of this infected man, a full blown AIDS patient in a remote village in Manipur. None of us in the shooting team had any fear as he told us his story of sharing ‘’number 4’’ [local term for pure white heroin smuggled from across the Moreh border from Myanmar] intravenously using the same syringe and needle. We had no fear as we knew that by sitting near and speaking to someone who was dying of AIDS one can’t get the disease.
In Vellore a sobbing wife of a victim told us how his colleagues in a government of India undertaking had threatened to strike work when he was declared positive. He had to leave his job. Later when his landlord came to know he asked the hapless man to vacate the house. Next day the milkman refused to supply milk to his family. The school where his three children studied asked the mother not to send the children to school. Their children were not allowed to play with other kids where they lived. Weeping bitterly the wife of the man said, “There is no point living like this; the only choice before us is suicide”.
There have been plenty of instances of children of HIV infected parents being thrown out of schools in the country’s most literate state of Kerala.
By now everyone knows how one gets infected. In the early days of the spread of the virus people needed scientific information as to how HIV was transmitted. According to one of the scripts of one’s radio series on HIV/AIDS:-
“It is difficult to be infected by the virus. Unless you try it will not infect you unlike other communicable diseases. The causes for anything from a common cold, influenza, waterborne diseases, TB, chicken pox, dengue, malaria, jaundice or most other diseases are germs and viruses over which we have little control. But to get HIV into your body you really have to try for it. Don’t buy drugs and use it intravenously; don’t buy sex or have multiple sex partners; don’t buy untested blood. Practice safe sex; use a condom- but it can only reduce the risk of infection”...... There are also routes like transmission from an infected mother to her baby.
India, thanks to interventions by the state and central governments, civil society initiatives, WHO and UNAIDS; also the National AIDS Control Organization [NACO] , the nodal agency of the government established in 1992 has succeeded in reducing the spread of HIV/AIDS. According to NACO “India has demonstrated an overall reduction of 57% in estimated annual new HIV infections [among adult population] from 0.274 million on 2000 to 0.116 million in 2011; and the estimated number of people living with HIV was 2.08 million in 2011”. In the list of countries  by HIV/AIDS prevaIence rate, India ranks 81 with eight other countries and our success in AIDS prevention is impressive. Initially, HIV infection was considered incurable but we now have antiretroviral treatment giving the infested hope.
We can’t be complacent and sit on our laurels of controlling the infection rate. There is need for eternal vigilance to keep the deadly virus at bay.