Do the PEP Talk
India’s public healthcare system has been unsupportive of sexual minorities. PEP, a critical HIV prevention treatment, is often denied on grounds that are driven by morality rather than medicine. Will this change in the post-Section 377 era?
In June, CM, a 23-year-old who was working in Delhi at the time, dialled 1097. It was a distress call to the AIDS Helpline. CM told the operator that he needed PEP (post-exposure prophylaxis) pills, an anti-HIV medication, which needs to be taken within 72 hours of having unprotected sex, if an individual feels they have been potentially exposed to HIV.
“I told the operator I was raped,” says CM, focusing his gaze on me. “I remember telling him about my situation and my sexual orientation. I told him that I urgently needed these pills. I called the helpline twice, and on both occasions, different operators told me that the pills weren’t available. How can a helpline committed to preventing HIV, not be able to help me get these pills?”
When we called 1097, we were told that PEP was reserved for hospital clinicians only. The AIDS Helpline was established in 2014 by National AIDS Control Organisation (Naco) to provide information to the public regarding HIV/AIDS, preventive care practices and counselling. The helpline also gives callers details of the nearest ART (antiretroviral therapy) clinic. ART effectively minimizes the virus in an infected individual’s body and slowly repairs the immune system.
CM and I are sitting in the foyer of a college in Chennai. It’s the morning of 7 September, one day after the landmark Section 377 ruling by the Supreme Court which decriminalized consensual same-sex relationships, 158 years after the British colonial government in India first criminalized sexual activities that were “against the order of nature”.
Lord Thomas Macaulay, who outlined the parameters of the Indian Penal Code back in 1860, had deemed homosexual relationships grotesque and “odious”. India’s home-grown moral guardians were quick to take up this thinking. In 1998, when Deepa Mehta’s Fire—the first Hindi film to explore a lesbian relationship—released, right-wing Hindu fundamentalists ransacked movie theatres in protest. In 2008, the then additional solicitor general, P.P. Malhotra, claimed that decriminalizing homosexuality would undo peace and the “evil of AIDS and HIV would further spread”.
When CM made the call in July, it was still a crime for a man to have consensual sex with another man. “So I lied about getting raped,” he says, folding his arms guardedly. “The truth is, it was my fault. I had unprotected sex. But I lied because I thought it would elicit a better response or give them a sense of urgency and they would do whatever they could to get me the pill. But they didn’t. Instead, they were very cavalier in the way they spoke to me.”
CM was advised by the helpline operator to go to the nearest government hospital. He went to the All India Institute of Medical Sciences (AIIMS) on the third day from his encounter, an hour before the hospital’s pharmacy opened. “But there were people standing in queue from 3 hours in advance,” he says. “Finally, when I got to the end of the queue, the pharmacist told me, ‘Sorry, hum logon ko sarkar ne mana kiya hai. Humari policy nahin hai yeh dene ko (Sorry, the government has told us not to give the medicines. It is our policy not to give these out).”
PEP is a potentially life-saving medication that minimizes the likeliness of HIV infection after probable exposure. The sooner it is taken, the more effective it is likely to be. To get on the pill, the individual must be HIV negative and must take it for 28 days, at the same hour of the day. It is effective on heterosexual men and women, and drug-injecting users as well.
PEP is crucial and could go a long way in battling the spread of HIV. India has the third-highest number of individuals with HIV, after South Africa and Nigeria, with 2.1. million people (according to Naco’s estimate). The World Health Organization recommends that PEP must be made available to all individuals who could have been potentially exposed to HIV, but the Union government, due to concerns around misuse, provides the treatment only to medical staff (for occupational exposure) at public hospitals. This has been Naco’s stance since PEP was introduced in the early 2000s. Neighbouring countries like Pakistan and Sri Lanka have the same policy. PEP is available in private clinics, where one bottle of medication (30 tablets) can cost anywhere between ₹2,000-4,000.
“PEP is primarily meant for people who are occupationally exposed to HIV,” says a Naco representative, who requested not to be named. “By and large, it is for hospital staff who might be at risk of getting HIV after an exposure, either because of a spill, or if they have (accidentally) pricked themselves with the same needle they used on (an infected) patient while taking a blood sample. It is not meant for a person who has had casual sex, suspects that he may be HIV positive and wants PEP. If you are having sex, then please use a condom—this is our stance.”
If a person is raped, the standard operating procedure at government hospitals is to give PEP to the individual. But Mint has reported in the past (16 July, “Accessing healthcare still an ordeal for LGBTQ in India”), an incident where a transgender rape victim was denied the medication. The doctors who were examining her were reported to have asked her tauntingly how she could even be raped. She was denied first aid and was not even “prescribe(d) emergency medication for HIV prevention, which is usually recommended to a victim of sexual violence”.
In CM’s case, desperate for help, he visited an NGO, where a counsellor advised him to receive his PEP treatment from AIDS Healthcare Foundation (AHF), India, the local wing of the US-based non-profit organization that works in sexual health and AIDS rights. It provides PEP to anyone in need for free.
“If a person did not have access to a condom for whatever reason, or if things happened unplanned, he shouldn’t be denied medication that could prevent him from getting the infection,” says Dr V. Sam Prasad, who is the country program manager at AHF—The People’s Clinic, India. “With that one crucial denial, he will have to suffer the rest of his life.”
In most developed nations, such as Australia, the US and the UK, there are government guidelines in place for treatment of non-occupational exposure (like sexual intercourse) to the virus. PEP is available at public health centres, in emergencies, to anyone in need. Further, it is provided free of cost in countries like the UK and Ireland.
In April 2017, the ministry of health and family welfare declared that it aimed at “ending AIDS by 2030” and announced its commitment to providing free antiretroviral therapy to anyone who was HIV positive. “If the government says it is committed to giving HIV patients ART for a lifetime, what is stopping them from giving 28 days’ medication to anyone who has been exposed to the virus?” asks Dr Prasad, who believes it will be more cost-effective. “If we are looking at a 2030 goal, the policymakers need to look at changing the policy soon.”
Into the fold
What is crucial, although perhaps also the hardest, is to wipe out the stigma and shame associated with homosexuality and HIV/AIDS, which compels gay and bisexual men, as well as the transgender community to avoid the formal healthcare system.
Manvendra Singh Gohil, belonging to the erstwhile royal family of Rajpipla in Gujarat, navigated through his own sense of stigmatization from his family before finally coming to terms with his sexuality. As the ambassador for AHF, India, he notes that there has been a sea change after the Section 377 ruling. “Earlier there was the fear of getting caught. That fear, that they will be seen as criminals, is no more. We are seeing a lot more people come for HIV testing at AHF. They bring their partners as well.”
Furthermore, three decades after the first AIDS case was discovered in India in 1986, the government passed the HIV and AIDS (Prevention and Control) Act in 2017. The Act prohibits discrimination in employment and treatment against those with HIV. It also ensures confidentiality. It forbids people, corporate organizations and healthcare institutions from disclosing the HIV status of an individual. For MSM (men who have sex with men) and transgender individuals with HIV, this is a great boon.
“It’s a huge step,” says Gohil. “However, many aren’t even aware of this Act’s existence. This Act in India was necessary because HIV is not seen as a health issue, but a social issue due to stigmatization. But now this awareness needs to be disseminated so that people are made aware of their rights.”
In India, LGBTQ+ sub-groups—MSM and transgender individuals—fall in the high-risk category of being infected with HIV. Naco’s 2016-17 annual report quotes statistics to indicate that 4.3% of MSM and 7.5% transgender individuals in India are living with HIV. The transgender community has the second highest percentage of HIV individuals (after Injected Drug Users), among the high-risk groups (which also include Female Sex Workers and Truck Drivers).
Matter of consent
In Sant Nagar, a residential complex in Delhi, a cluster of low-rise buildings stand close to one another. Tucked within one of these buildings is the National Coalition of People Living with HIV (NCPI+) office. On a blustery Saturday morning, Firoz Khan, the national coordinator at NCPI+, sticks his head out of the first-floor balcony to invite me upstairs. Since its inception in 2012, the organization has worked tirelessly with Naco, as well as the State AIDS Control Societies (SACS), doing considerable advocacy, while providing community feedback on the implementation of the government’s ART programmes by flagging problem areas and highlighting gaps.
In India, if you want to be tested for HIV, you have to be 18 years or older. As per the HIV/AIDS Act 2017, if you are younger, you need a legal guardian by your side. “If you look at the MSM and TG (transgender) community particularly, many are exposed early to sexual activities,” says Khan, who is also a gay rights activist. “Many such children, because they are slightly effeminate, are more vulnerable to being taken advantage of at a young age.”
There are the oft-heard narratives of sexual exploitation: a class teacher, an older cousin, an uncle, older sibling—the invisible predators. One of Khan’s friends was repeatedly raped from the age of 12 by his elder cousin for years. The rape and abuse cultivated an irreversible sense of anxiety within him and made him more vulnerable to sexual bullying from others. He tested HIV positive at the age of 21.
Often adolescents who are involved in sexual activities (by force or otherwise) are not aware of their HIV status. Those who belong to conservative and/or lower-income families find it particularly hard to approach their parents for help. “They cannot say, ‘Papa, I am attracted to the same sex or I’ve been involved in sexual activities’,” says Khan. “And because they are too embarrassed and fearful to tell their family, they cannot get their HIV test done.
“In the process we are losing important cases—the ones we can prevent at the right time and the lives that we can save,” says Khan. “In fact, we are allowing the infection to spread, because until we know the child has HIV, we can’t put him on treatment. That is why we’ve been trying to lower the age of consent for HIV testing from 18 years to at least 16, if not 14.”
Khan has his own story to tell. When he was 17, he went to two government-run ICTC labs (integrated counselling and testing centre) to get himself tested. Both did not permit him to get the test done without a guardian by his side. Desperate, when he went to the third centre, he lied, stating his age to be 19. Khan tested HIV positive and was immediately put on treatment.
Among the LGBTQ+ community in Delhi, Gautam Yadav, 28, is like an older brother to a number of young gay men and transgender individuals, particularly those suffering from HIV and AIDS. Yadav, a programme officer who specializes in crisis management at Humsafar Trust, an NGO that supports and fights for LGBTQ+ rights, is HIV positive. He began exploring his sexuality at the age of 13. When he turned 18, his counsellor at Naz Foundation (an NGO which works with HIV/AIDS individuals and has played a pivotal role in the legal battle against Section 377) advised him to get tested. “It took me nine months to mentally prepare myself,” he says. When he finally went, he tested positive. His CD4 count (white blood cells which combat foreign infection) had dropped to 140. A healthy person has a CD4 count of anywhere between 500-1,500. A person who is HIV+ has a CD4 count of 350-500. He or she typically reaches the AIDS condition if the CD4 count falls precipitously below 100.
Naco has stated that once an individual tests HIV positive, irrespective of their CD4 count, they will be given ART. In an April 2017 press release, the Union minister for health and family welfare J. P. Nadda said that there were nearly 1,600 ART clinics across the country.
No country for the marginalized
Transgender and hijra groups are most vulnerable in the LGBTQ+ community, and are often at the receiving end of unchecked discrimination. They typically face a double stigma in government hospitals—of being transgender and being HIV positive.
Yadav narrates the incident of a HIV+ hijra who needed to get an operation. He recommended two hospitals. She had already had a bad experience at the first. She was operated upon at the second hospital and put on the ART programme thereafter, but after repeated discrimination, she eventually stopped visiting the hospital, and later died. “There are many such cases,” says Yadav. “The community refuses to go to government hospitals because of stigmatization and discrimination. Many places in India may state that they recognize the third gender, but these things mostly look good on paper. To actually have this in practice will take years.”
Twenty-year-old SB, a trans-woman, says she visited Bhagwan Mahavir Hospital in Delhi a year ago. “I had a problem in my private parts and wanted to meet a skin specialist,” she says in Hindi. We are sitting on a bench in Rajiv Chowk, New Delhi. SB sits poised, hands on her knees, her legs elegantly entwined. After meeting the doctor, she stood in the queue at the hospital’s pharmacy to collect the prescribed medicines. “Initially, I stood in the men’s line. When I finally reached the counter, the pharmacist looked me up and down and refused to hand me the medicines,” SB alleges. “He told me to stand in the line for women. When I queued up behind the women, they appeared awkward around me. When I finally reached the counter, the attendant smirked and said, ‘You’re in the wrong queue. Please go stand in the men’s line.’ I had wasted 2 hours going back and forth, only because there was no line for transgender (people).” Finally, SB fought her way into the medical cabin and demanded the medicines. “I got them, but I had become a laughing stock for everyone by then.”
Gohil recalls the case of a young gay man who was HIV positive. “He had taken great courage to come out to his mother. When he went to a government hospital with her, the counsellor at ICTC there asked him, ‘Kiske pass se marwa ke aaya hai?’ (‘whom did you f**k?’). Imagine what the mother must have gone through, since she was sitting right there.” In another incident, one young man was condescendingly reprimanded by a counsellor, “Aisa kaam karega, toh aisa hi hoga (If you do this kind of thing, this is exactly what will happen).”
Many young people from the community in India suffer years of mental trauma and depression. Those who learn that they have HIV, must contend with an enhanced sense of fear and loneliness. “When I learned I had HIV, I remember breaking down,” recalls Palash Borah, a queer HIV rights activist from Assam who was diagnosed in 2016. “It took me one-and-a-half years to get over the trauma.” Many contemplate suicide. Then to face their condition, accept it and finally muster the courage to visit a public hospital, only to be mocked or frowned upon, is demoralizing.
“The chances of healthcare professionals at most government hospitals treating them properly, talking and listening to them politely, and not judging them, are extremely low, because they tend to be very dismissive of people from the community,” says Delhi-based human rights activist Anjali Gopalan, the founder of Naz Foundation. “This is my take…the staff often thinks that they deserve what they get.”
At night, the poorly-lit parts of public parks and dingy corners underneath bridges or near public toilets transform into cruising sites where MSM and transgender individuals wander, looking for potential partners. These sites are scattered across Delhi: the famous “Gay Park” in Connaught Place, for instance, or the ISBT bus terminal which witnesses an influx of hundreds of migrant workers every day; or the sprawling and deserted underbelly of the Lajpat Nagar bridge, near the Metro station.
“If you go to these places at night, you find kothis roaming about,” says Dr Prasad of the AHF. Kothis are an MSM sub-group who assume the female role while engaging in anal sex. “If, for instance, a heterosexual man has to go to a public toilet, he might end up having a conversation with a lurking kothi there,” he explains. “Some kothis offer free sex, because they are in it for the experience. Now if a bi-curious heterosexual man is getting free anal sex—since his wife is reluctant to give it to him at home—he might give in. The same man will go home and later have sex with his wife. That is another way HIV can spread.”
About six months ago, AHF initiated the Moonlight Project, which sends mobile vans to such locations at night and offers free, on-the-spot HIV testing. “Moonlight” is an acronym for Mainstreaming Out Of Network Lesbians, Intersex, Gays, Hijras and Transgenders. “We are trying to mainstream networks which were earlier out of our reach, as well as out of the reach of Naco’s target intervention networks,” says Dr Prasad. “AHF is the only organization in India that has decided to do this. No one is doing evening/night HIV testing, which is precisely when most people from the LGBTQ+ community step out.” In June, about 30-35 people stepped into the AHF mobile van for an HIV test at Kashmere Gate in Delhi, out of which 12 tested positive in one night, according to Dr Prasad.
A study published in October in The Lancet stated that new HIV cases among men was slashed to a third in Australia by another antiretroviral pill, Truvada. It is a daily pill that is taken as pre-exposure prophylaxis (PrEP). The pill protects a healthy person from contracting the virus. It is meant to be had for as long as the person is sexually active. The medicine cannot be misconstrued as a “morning after” pill, nor does it give people the leeway not to wear condoms. It only serves as an additional HIV prevention layer. Presently, PrEP is not part of India’s national HIV programme, but is under study at Naco. “The government is yet to formalize a policy with respect to who it should be given to or whether it should be given at all,” says the Naco representative. PrEP pills, however, are available in private hospitals.
For decades, healthcare for the LGBTQ+ communities has fallen between the gaps. To mitigate the reach of the AIDS epidemic would mean expanding research within these sub-groups, raising awareness about medication, including PEP and PrEP, while continuing to provide free HIV treatment to those belonging to the lower economic strata in public hospitals. “I think people should at least be made aware of PEP,” says Yadav. “If the cases come to Humsafar Trust, then we guide them about what to do and where to go for treatment, but there are many people who don’t know where to go. If they have an encounter and think they might have HIV, many give up and feel like nothing can happen now.”
So does the afflicted individual bear responsibility for treatment or is it the government? Amartya Sen, in his foreword in AIDS Sutra, a 2008 anthology of non-fiction accounts on HIV/AIDS, published by Random House India, concluded, “...first we have to stop blaming the victims and stop looking for reasons for leaving them to look after themselves. We are in it together.”
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