The life positive: The incredible journey of India’s oldest HIV survivors

Thirty years since the first HIV case was detected in India, a look back at the journey of the disease’s oldest survivors.

Written by Anuradha Mascarenhas | Published:July 10, 2016 12:00 am
HIV survivors, HIV AIDS, HIV, Noor Mohammed, Human Immunodeficiency Virus, inspiring stories, beating the odds, B Sekar and Rama Pandian (right) were in their 20s when the virus struck them.

July 22, 1987. How can I forget this date? That was the day they told me I had HIV and that I would live only for one year,’’ says 66-year-old Noori Saleem, a transgender activist in Chennai.

Born Noor Mohammed at Ramanathapuram, Tamil Nadu, he had run away from home when he was 13, tired of being bullied about his feminine gait and of frequent beatings from his father. “I was employed by a Chettiar family in Chennai. I earned my living by washing utensils and clothes. That is also when I discovered the girl in me,” Noori says. He was 18 when his father died, and he returned home to pay his respects. When he realised he would be forced into marrying a woman, he ran away again — this time to Mumbai. “I met Pattama, a transgender, and stayed at her house. I performed at weddings, dancing and singing at birth ceremonies. Soon I was thrown into commercial sex work. I also met my partner, who was from Beed in Maharashtra. He loved me for who I was and was not bothered that I was a transgender or hijra. We went to Chennai but as it was difficult to make ends meet, I continued sex work,” she says.

It had been four years since the Human Immunodeficiency Virus (HIV) had been identified by scientists in the US and France in 1983. In India, too, rumours swirled of a dreaded, incurable disease that stalked sex workers. “There was this talk of HIV. Along with others, I too volunteered to get my blood tested,” says Noori.

In May 1986, Dr Suniti Solomon was a 47-year-old microbiologist at Madras Medical College heading a team of researchers studying the HIV virus. Trained in pathology in the US and the UK, she had a strong suspicion that the virus had made inroads in India. As a part of the project, Solomon’s team collected 100 blood samples from a group of prostitutes from Bombay, who had been picked up by the police and confined to a remand home in Madras. Of these, six tested positive for HIV. Solomon sent the samples for testing at Johns Hopkins University, Baltimore, USA. Her findings were confirmed. A second batch of sex workers in Mylapore was tested in a few months — Noori was one of them.

HIV survivors, HIV AIDS, HIV, Noor Mohammed, Human Immunodeficiency Virus, inspiring stories, beating the odds, Noori was detected with HIV in 1987.

“It was a crazy time. We were so scared of everything. As a transgender, I did not even get treatment. At the hospital, they refused to let me wait in the women’s queue and the men objected when I stood in theirs. I was looked at with disgust and hatred, but I was determined to get better,” she says. Solomon, however, ensured she got treated. “She quietly told me to give up sex work,” says Noori.

Solomon, who passed away last year, helped set up India’s first HIV voluntary counselling and testing centre at Madras Medical College. She also established the YR Gaitonde Centre for AIDS Research and Education (YRG CARE) in 1989, now headed by her son Dr Sunil. “Imagine the shock and panic, especially for people who were gay and had to come out and say there were HIV positive. Stigma remains one of the biggest impediments, especially for high-risk groups, including a growing community of injecting drug users,” he says.

***

“If you ever come back here again, I will kill you. Vidya then spat on my face and walked away,” recalls Shyamala Natarajan.

In September 1988, Natarajan was a 28-year-old journalist. She had approached the Tamil Nadu government, asking them to let her visit a remand home, where women sex workers, who had tested HIV positive since 1986, were kept so that they would not “infect” others.

Originally detained under the Prevention of Immoral Traffic Act (PITA) and sentenced to between one and three years of detention in a remand home, they were not released even when they had served time. In effect, they had been imprisoned for being detected with HIV. “There was absolutely no access to any of the sex workers. I was told to go home and look after my kid and husband. So I decided to visit the remand home as a social worker,” she says.

In a dilapidated building, a group of women, between 20 and 25, had been confined, clueless about the disease they had contracted and what lay ahead. They were referred to as “pools of infection”, without taking into account the men who had infected them were free and undetected. “They were not told anything and just dumped at a remand home. One girl with tears streaming down her face came up to me and told me she had a one-and-a-half-year-old child in hospital. ‘Nobody is visiting me. I don’t know what has happened to my child. So go away and don’t write our stories’,” Natarajan recalls her words.

Selvi, among the first lot of sex workers confined thus, knew something was wrong with her blood but was denied any information. “There was no law that said one had to be locked up if he/she had HIV. That’s when I filed a writ in the Madras High Court. An independent commissioner was appointed to look into the issue. They found substance in the claim and released the women. Soon, I resigned as a journalist and set up the South India AIDS Action Programme (SIAAP). In 1993, Selvi started working in the organisation,” says Natarajan. In 1990, Madras High Court ordered the release of the women from the remand home.

Natarajan recalls their mission in 1989. “It was straightforward: preventing the spread of HIV. The rights of people identified as ‘high risk groups’ or infected with HIV were routinely abused. Even the idea of counselling for HIV prevention was non-existent. Public sentiment was hostile, NGO participation almost nil, and donor money scarce,” she says.

***

The first National AIDS Control Programme (NACP) was launched in 1992,to control the spread of the infection. Under it, over 500 STD clinics were set up to provide treatment for sexually transmitted diseases at district hospitals and medical colleges. Over 600 new blood banks were set up.

By October 31, 1993, a total of 494 full-blown AIDS cases had been reported to the Ministry of Health and Family Welfare, with Tamil Nadu and Maharashtra contributing the highest number. Through the 1980s and 1990s, fear and paranoia about HIV did not abate. Those infected with the virus were shunned by families and friends. There was inaccurate information, very little knowledge on getting tested for HIV and in general no reassurance given to the patients.

“It was an ominous silence. Initially, we did not know what to expect. Soon, news of the first few cases of AIDS deaths gave an indication of how grim the battle was ahead. People started going underground as they soon realised that HIV was a death sentence. There was shock, fear and panic. No one wanted to touch an HIV-infected person, It was worse than being a worm,” says Rama Pandian, who was a laboratory technician in a Chennai hospital.

In 1992, Pandian, 24 years old, contracted HIV while handling a blood sample. “Even before the confirmatory HIV test report was given to me, I was told to quit. It was a terrible time. There were no support centres or counselling, nor was there any medicine,” says Pandian, who started the Tamilnad Network of Positive People (TNP+) in 1994 to support a growing HIV positive population. “Many people died. I was lucky to survive as I ensured that I ate well and exercised regularly. I even got married to an HIV-positive woman in 1999. We had a girl in 2002,” he says. The child does not have HIV.

In 1992, B Sekar was a 27-year-old athlete in Chennai, a graduate in history, looking forward to a career as a policeman. He was, unknown to his parents, gay. He had cleared the fitness test to join the police when a medical test dashed his hopes. He had tested positive for HIV. “I was aware of my sexual preference right from the age of 16 and it all came out when the test showed HIV positive. My family threw me out of the house,” he says. “My mother remained close to me but the rest of the family felt let down. It was only my dear friend Dr Raj Kumar (who is also my partner now), who supported me.”

Confronted with an existential crisis, Sekar chose not to give in to the ostracism but talk about HIV. “I sought out my gay friends at parks where we spoke about this new disease. I joined an NGO, met friends from the gay community and spoke about what happened to me. I told them they had to be careful. My family, friends were embarrassed when I started speaking publicly about being gay and HIV positive,” he says.

With help from friends and a WHO-run project in 1997, Sekar and his friends set up a community action network called Social Welfare Association for Men (SWAM). “There was no treatment then. But I wanted to help my community. We wanted to promote safe and healthy sexual behaviour, distribute condoms and reach out to gay men in Chennai,” he says. Sekar is now on the second line of drugs for treating HIV.

***

Today, India has an estimated 21.17 lakh people living with HIV, with children accounting for around seven per cent. It is estimated to have around 86,000 new HIV infections in 2015, showing a 66 per cent decline in new infections from 2000 and a 32 per cent decline from 2007, the year set as baseline in the National AIDS Control Programme (NACP-IV).

“From those early days when there was no hope and interventions were too few, these three decades have made a remarkable difference in that people can live almost a full life. Now we need to consolidate the gains and intensify prevention interventions, especially so among the at-risk sub-populations. This may, perhaps, give us an opportunity to virtually eliminate a chronic viral infection that does not have a vaccine or a cure,” says Dr R Gangakhedkar, director of National AIDS Research Institute, (NARI), Pune.

Manoj Pardeshi, general secretary of National Coalition of People Living With HIV, admitted that the biggest challenge today is to ensure that people adhere to treatment. While the government is rolling out the third line drugs for people who have failed the first and second line regimen, Pardeshi complained of an inconsistent supply of drugs.

Looking back at those years, Noori counts the losses, among them her friend, Selvi, who was one of the first to be detected HIV positive. “At the time, HIV was spreading at an alarming pace and there were was no support — be it economic, medical or psycho-social. It was important to tell HIV positive persons to live with freedom and dignity,” she recalls. Thirty years later, Noori has travelled more than 25 countries, addressing AIDS awareness campaigns and is now planning a home for orphans infected with HIV.

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