It was Valentine’s Day morning in February 1989, and Dominic D’Souza, a 29-year-old living in Parra, a rural parish of north Goa, had just finished breakfast with his mother and aunt when a policeman arrived and whisked him away . Without being told why , Dominic was hustled around the police station, a hospital and badgered with questions about his sexuality and sex life until he was jolted into realizing he was a carrier of the HIV virus.It’s been 25 years since India’s patient zero of the dreaded scourge, who was the first to bear the brunt of ostracism and whose case became the first HIV-related one to reach the courts, succumbed to AIDS. From being handcuffed and left to rot in an abandoned tuberculosis sanatorium to challenging the Goa Public Health Amendment Act, which called for mandatory isolation of HIV-positive persons, Dominic’s legal, medical and emotional journey irrevocably changed not only his own life but became a rallying cry in the struggle for equal rights to treatment and care for those with HIV in India.
Still fit at the time of arrest, Dominic had maintained he was an HIV carrier but not an AIDS patient even as he was being quarantined with rats. Finally , he legally fought his way out 64 days later. On release, he lost his job but chose not to play the victim. Instead, he became India’s first HIV-positive activist. Goa became a centre of AIDS activism with Dominic setting up Positive People, an NGO for the rights of the HIV-infected. Isabel de Santa-Rita Vaz, his friend who’d rallied around him and continued his mission with Positive People, recounts: “His agony was unbearable for us. Dominic knew it wouldn’t be possible to achieve total freedom from infection but wanted to start an organisation that could combat discrimination.“
Although he won a partial victory at first when the state amended the Goa Public Health Act and court made detention optional, Dominic lost his life three years on, on May 27, 1992, at 33. “Dominic lived with AIDS, but he lived not to be ashamed,“ read his obituary in Goa’s newspapers in 1992, in keeping with his wishes. “He is survived by his twin brother who lives in Sweden, a sister in Mombasa and another brother in the US,“ says Vaz.
Today , there are an estimated 2.1million HIV-positive persons in India. Even though diagnosis is no more a death sentence but a chronic illness for which medicines are easier to access, and one can live longer, regular lives, the challenges are many . The stigma it carries and its association with homosexuality , drug use and sex work still impedes the shift in people’s attitudes, says Vaz, adding that the other big challenge is “funding“. Yet, what happened 25 years ago changed the national conversation on the disease and laid the grounds for the HIVAIDS Bill passed by Parliament last month. “The dream of having an integrationist approach which requires testing with informed consent and preserving confidentiality and integration of the individual in society has been passed,“ says Anand Grover, Dominic’s counsel, who’s been fighting for HIV patients in court since he first met Dominic.“We not only became good friends but worked to oppose the Centre from adopting the Goa Public Health Act model nationally. That was India’s first movement on HIV issues.“
The HIVAIDS Bill passed by Parliament was drafted by Grover’s Lawyers Collective.But Grover is apprehensive about the `test and treat’ policy of providing ART as soon as a person tests positive irrespective of his CD count (see box) or clinical stage that it introduced. “India is still far from the goal of complying with the 500 CD count regimen even now,“ says Grover. Moreover, the caveat it introduced about treatment services being provided `as far as possible’ could be an escape route for government to evade its obligations. A lot remains to be done.“
Grover’s resolve was predestined. In May 1992, shortly before his death, Dominic had “extracted“ a promise from Grover. “ A promise I did not realize would have a profound impact on me. It was May 22, 1992. I got a call about Dominic being seriously ill and in Breach Candy hospital in Mumbai. I rushed there. The otherwise handsome young man was skin and bones, but he was only interested in what I was doing for HIV issues. Whether by design or accident, it became a promise that I’d continue doing legal work for HIV rights.“ The cases he handles now are primarily about access to medicines, discrimination and negligence of health care workers.
[Today , Gay Bombay will celebrate the legacy of Dominic at the G5A Foundation with two screenings `My Brother… Nikhil’, by Onir, inspired by Dominic’s story , and `Dominic’s Dream,’ a short film by Sopan Muller about his legacy in Goa, while Anand Grover will speak about the movement]
–Inputs by Lisa Monteiro