Legacy of Dominic D'Souza lives on

Last week marked the twenty-fifth death anniversary of Dominic D'Souza, India's first person living with HIV who had waged a brave battle against HIV stigma and discrimination. Dr Ishwar Gilada, President of AIDS Society of India (ASI) who was among the first few doctors who came forward for HIV care when first case got diagnosed in the country, said "The news of Dominic D'Souza who was jailed in Goa, on being found HIV positive, was brought to our [Indian Health Organization, now known as People's Health Organization] notice by his friends Isabel Vaz and Anesia Colaso."

Added Dr Ishwar Gilada who also leads People's Health Organization (PHO): "Responding promptly, we got into action and soon organized a press meeting in Mumbai and a sensitization session on HIV for lawyers. We stirred up the campaign by mass rallies in Dominic's village Parra near Mapusa and Panjim, addressing press conferences in Panjim, one-on-one meeting with legislators which eventually led to addressing the Goa State Assembly with the help of its Speaker Mr Dayanand Narvekar, and then filing a writ petition through Dominic's mother Lucy (a retired nurse) - all within three days! To demonstrate that HIV is not transmitted through casual contact back then, Ram Ashar and I had stayed at Dominic's home."

Dominic's passed away 25 years ago but efforts to end HIV stigma and discrimination have only intensified since then. His legacy continues to inspire and not surprisingly, just last month, the Bill prohibiting discrimination against persons living with HIV (PLHIV) got passed unanimously by Lok Sabha. "AIDS Society of India (ASI), a membership association of doctors and researchers in HIV care, has welcomed the passage of "The Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Bill, 2014" in Lok Sabha. The Bill seeks to prevent and control the spread of HIV and AIDS, prohibits discrimination against persons living with HIV/AIDS, provides for informed consent and confidentiality for their treatment, places onus on establishments to safeguard their rights, and creates mechanisms for redressing their complaints. Its better late than never, as it provides a very conducive atmosphere for PLHIVs to seek treatment, employment, insurance in non-discriminatory fashion, with penal provisions for those violating the provisions in the Bill" said Dr Ishwar Gilada.

"ASI has been championing the issues that are core in this Bill. Most of ASI suggestions made through the Parliamentary Standing Committee on Health and Family Welfare, have been accepted and incorporated in the Bill, like: provision of life and medical insurance for PLHIVs, informed consent as well as provider-initiated testing, partner notification whereby spouse of HIV infected person could be disclosed about the HIV status, protection and immunity to healthcare persons involved in HIV prevention work, right of residence to HIV infected or affected children and female spouse, among others" informed Dr Gilada.

But a lot more was expected from this Bill. "Some ASI suggestions we submitted for this Bill are still under consideration  and we hope will soon see the light of the day. These suggestions include: provision of post-exposure prophylaxis (PEP) to victims of rape and sexual assault by even keeping the PEP kits in police station to prevent HIV, compensation for healthcare personnel if s/he gets HIV infection in course of duty, right of adoption for PLHIV couples subject to their health status, legal guardians not to have right to liquidate property of HIV infected or affected children when they are below 18, rephrasing 'HIV related' with 'health related' in pre-marriage counseling and testing to prevent discrimination, among others" said Dr Gilada.

Big move from "mandatory" to "optional"...

Recollecting times spent with Dominic in supporting his struggle to end HIV discrimination, Dr Gilada said "We are thankful to the Mumbai lawyer Anand Grover for taking up the case free of charge, though we did support his logistics - air fare and stay at Hotel Mandovi - from our meagre resources. To acquaint him and Indira Jaising with HIV related issues, we had organised a training session for them. After 64-days isolation Dominic was released from Mapusa TB Sanatorium. Later, the Goa Public Health Act 1987 was repealed where the isolation of HIV infected person was made optional from mandatory." The Bill passed last month if implemented effectively, could be the final 'nail in the coffin' for HIV discrimination.

"Later in January 1992, with Dominic’s initiatives, the IHO (now PHO) started self-help group 'Positive People' that was transformed into a NGO. Dominic became ill and was shifted by PHO from Goa. He died of Pneumocystis Carinii Pneumonia (PCP) at Breach Candy Hospital and PHO settled the Breach Candy bill of Rs.78,000. Thanks to the renowned physician Dr Farokh Udwadia who didn’t charge his fees."

Dr Bhimani, Dr Gangakhedkar, Dr Gilada, Mr Ashar

He was cared for during his last days by Dr Ishwar Gilada, Dr GV Bhimani, Dr Raman R Gangakhedkar (present Director of National AIDS Research Institute of ICMR) and Mr Ram Ashar.

Although considerable progress has been made towards reducing HIV related stigma and discrimination, yet the struggle is far from being over. With passage of India's Bill against HIV discrimination, perhaps the efforts to eliminate HIV stigma and discrimination will gain unprecedented pace and accelerate progress towards ending AIDS by 2030.

CNS (Citizen News Service)
15 May 2017

2 comments:

  1. Excellent, thorough, factual piece on Dominic D'souza and his legacy , as a tribute to him on his 25th death anniversary

    ReplyDelete
  2. Excellent article! Good time to remember the many champions who have challenged HIV-related stigma over 25 years. Respect.

    ReplyDelete