Last Updated on October 9, 2023 by Neelam Singh
Dealing with the potential consequences of bias and discrimination such as unemployment, homelessness, and inadequate access to healthcare facilities, frequently compels LGBTQIA+ individuals to adopt behaviors that inadvertently contribute to the transmission of HIV.
According to the NCBI website, HIV infection among men who have sex with men (MSM) has been increasing across the world and India is also contributing to this increasing trend. In 2012, the Government, citing figures of the National Aids Control Programme, told the Supreme Court that India has an estimated 25 lakh gay population and about seven per cent (1.75 lakh) of them are HIV infected.
The current HIV scenario
According to news reports, Uttar Pradesh State AIDS Control Society (UPSACS) said early this year that around 1.78 lakh people are living with HIV in Uttar Pradesh. However, only 1.22 lakh know their HIV status.
According to UPSACS in 2018, only 58% of 1.65 lakh PLHIV knew about their status. This figure improved to 61% of 1.69 lakh in 2019 and further went to 63% of 1.73 lakh in 2020 and 65% of 1.78 lakh in 2021.
In last few years, India has come a long way in terms of HIV treatment. According to Dr. Shobini Rajan, deputy director general at the Ministry of Health and Family Welfare, AIDS Control Program, India has 680 ART centers which gives free antiretroviral medicines to more than 1.45 million people living with HIV. Dr. Rajan informed that none of the ART centers are solely for LGBTQ+ community. However, none of them can discriminate on the basis of the gender or sexuality.
Moreover, the government of India, in 2020, passed an act called HIV and AIDS (Prevention and Control) Act. The ACT bans the discrimination against those with HIV in employment and treatment.
However, the reality is harsh on the ground. LGBTQIA+ community individuals are scared of visiting the ART centers and getting tested because of the behaviour of centers workers and the stigma associated with it.
ART centers behaviour
The uncomfortable environment and behaviour of ART workers keep the LGBTQIA+ individuals away from getting tested for HIV. Vivan, 22, who identifies himself gay and pronouns he/him had sex with someone in March last year. It was without protection. He began feeling unformattable and there was bleeding from his anal. “I was scared that I might be infected with HIV because of unprotected sex. But, I was so scared to visit the hospital to get tested for HIV,” told Vivan.
While searching about HIV testing for LGBTQIA+ community on the internet, Vivan found out that his city Kanpur has a non-profit organization that helps people get HIV tested. He got in touch with the NGO people and visited an ART center. His worry and fear were further intensified when the ART center counselor began asking questions that made him uncomfortable.
“The room where the testing was conducted was crowded with people. I felt apprehensive about discussing my experience with the counselor. Additionally, when he discovered that I had engaged in sexual activity with someone of the same gender, his demeanor shifted. He made me feel as though I had committed a crime. ‘How do you engage in sexual activity with someone of the same gender? Does your family know about your relationships with men? Aren’t you ashamed of having same-gender sexual relations?’ These were the questions posed to me, which left me feeling disheartened about my identity. However, since I needed to undergo testing, I endured the interaction with the counselor,” Vivan recounted.
His HIV report was negative. “I was happy to know my HIV status. However, the entire experience was traumatized,” added Vivan.
This is a common experience for many LGBTQIA+ individuals who seek HIV testing at these centers. This is why representatives from NGOs accompany them to provide mental and emotional support. “Our organization strives to give them a sense of companionship during the process. Furthermore, we advise counselors to pose pertinent questions. We emphasize that they should avoid asking questions that might belittle the visitors or subject them to feeling like criminals,” explained Anuj Pandey, co-founder of the NGO Kanpur Queer Welfare Foundation.
The NGO organizes awareness programs throughout Kanpur aimed at the LGBTQIA+ community, motivating them to undergo HIV testing every six months. “We succeed in facilitating around 15 HIV tests within the community each month. Convincing everyone is a challenge; typically, those who experience health concerns after engaging in unprotected sex are the ones who seek our assistance. It’s disheartening that among the 15 individuals tested, 10 are diagnosed as people living with HIV (PLHIV),” Anuj revealed. The NGO extends its support to those living with HIV by providing counseling and medication.
The social stigma
Anuj also pointed out that due to the social stigma attached to both the disease and the LGBTQIA+ community, many individuals either avoid undergoing testing or prematurely discontinue their medication.
“Individuals lacking comprehensive information about the disease often believe that an HIV diagnosis equates to the end of their life’s potential. They perceive themselves as limited in their capabilities. Tragically, there have been cases where upon learning of their HIV status, individuals have chosen to end their lives. I’ve witnessed such heart-wrenching situations in Kanpur,” Anuj shared.
He highlights the unfortunate reality that individuals living with HIV in India are frequently treated as if they are criminals or suffering from some mental disorders. “This is precisely why those who are HIV positive hide their medication from their own family members. Yet, evading the truth can only persist for so long, as these medications demand consistent daily intake. Many individuals become overwhelmed and halt their treatment regimen midway. Consequently, such individuals may find themselves at a crossroads of suicide or a life marred by suffering,” Anuj concluded.
Undetectable = Untransmittable (U=U)
The website of National Institute of Allergy and Infectious Diseases (NIH) says, “People living with HIV who take antiretroviral medications daily as prescribed and achieve and then maintain an undetectable viral load have effectively no risk of sexually transmitting the virus to an HIV-negative partner.”
According to the Government data by UNAIDS, between 2010 and 2021 there has been a 76.5% decline in deaths and roughly 46% drop in annual new infections.
No doubt, HIV is an incurable disease. Once infected, people living with HIV have to live with it till their last breath. “But there are other such diseases. For instance, diabetes. You have to live with it your entire life once you are diagnosed with diabetes. You can’t cure it, but you can control. This is the case with HIV too. You can control it by exercise, better diet and medication. Science has become so advanced that you can actually make your HIV non-contagious,” said Darvesh Singh Yadvendra who also works for the community and run awareness programmes for HIV amongst LGBTQIA+ community under his NGO banner Pahal Foundation.
Darvesh through his NGO has been sensitizing the community people about HIV and helping them with testing, medication and mental support across Lucknow and nearby rural areas.
Another person living with HIV from Lucknow shared his journey of becoming U=U. Aniel Biswas, who is now 65 was diagnosed with HIV in 2005. It was too late when he was diagnosed. “The doctor told me that I had only 6 months to live. It was heartbreaking for me. I did not leave anything left to make sure I fight with the disease,” told Aneil.
He began exercising rigorously, changed his diet for better and took medicine without fail every single day. “In the process of fighting the disease and making my HIV virus undetectable and untransmittable I was so rigorous in my exercise that I ran India’s most intricate Obstacle Course, the Devil’s Circuit–Fifteen Army styled obstacles over a distance of 5 kilometres. These achievements made me the oldest person to complete the full course,” told Aneil. He did all of these when he was 59 years old.
Eventually, his HIV viral load reduced so low that it became non-contagious. “This is what people have to understand. If you are on the right medication and have a better lifestyle, you can make your HIV virus undetectable and you can say ‘I can’t pass it on’,” told Aneil. Now, he is running a small support group in his house in Lucknow where individuals from LGBTQIA+ community gather every week and share their experience and knowledge. “It is very important nowadays for youth to be well informed about HIV because they get involved in sex at an early age and they often fail to use protection,” added Aneil.
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