Caught in the middle

Neglected and invisible in India’s COVID-19 fight, the transgender community is battling vaccine hesitancy, one that could pose a huge risk for members, many of whom are immunocompromised

When the vaccination drive was rolled out this January, Khushi Parghi knew she wanted to get the jab. If there was any reluctance, it was because she was expected to register with an ID proof. Unlike many of her friends, Parghi has an Aadhaar card. “But, I don’t identify with that person anymore. I don’t even call myself by that name,” she tells us over a phone call.

Parghi, a Mumbai-based transwoman, has had to wait indefinitely to get the vaccine, because she wasn’t sure how the health staff would react if she walked into a centre with her Aadhaar card. “I am a completely different person now. It would have been an awkward moment for me, and I wasn’t comfortable being judged by people, who have no idea about my life or personal history.”

It was only last week that Parghi finally received her first shot at a vaccination drive organised for transgender persons at SL Raheja Hospital, Mahim (Fortis Associate). “I was relieved, actually,” she admits. “The staff was reassuring, and I didn’t have to offer any explanations.”

Over the last two weeks, a couple of drives have been organised for the city’s transgender community. The response, despite a slew of awareness initiatives, has been underwhelming. Rendered invisible during the first and second wave of COVID-19, the city’s trans community is now facing a more pernicious issue of vaccine hesitancy, which threatens to put several members, already battling health issues, at risk.

Khushi Parghi says she hesitated to take the vaccine, because submitting Aadhaar card details is mandatory to take the jab, and after transitioning, she no longer identifies with the person on her card

Kumar Shetty alias Kusum, the president of GAURAV, a trust that has been working for members of the trans community, and which jointly organised the vaccination drive at SL Raheja Hospital, says that misinformation, lack of education and poverty are key factors at play.

Some members in the trans community are still bound by the traditional, guru-chela (guru-shishya) relationship, which Kaustubh Sonalkar, co-founder, WISE (Woman of India Sustainable Empowerment), a platform that trains, and nurtures trans people, says is most important to tap into. “It’s like a gurukul system. The guru is the most senior member in the community, who adopts the rest, many of whom have been rejected by family and society. The members not only revere their guru, but trust the leader to be the final word on everything. If the guru says, don’t take the vaccine, they simply won’t.” The risk factors are higher, says Sonalkar, because they all live in large groups in small houses, where social distancing is impossible.

Kaustubh Sonalkar, Raj Kanaujiya and Dr Rahul Pandit

Kusum says that several gurus have not been allowing their ‘chelas’ to take the vaccine, because they have heard of instances of people dying even after getting both the doses. “There is a lot of fear and we need to address it, systematically. Recently, before the Raheja Hospital drive, we led an advocacy campaign with several gurus, explaining the vaccination programme to them.” A few of them were forthcoming.

While there are about 12,000 trans people in the city, only 70 of them turned up for the first drive they organised.

The city’s first vaccination drive for transgender persons was organised at SL Raheja Hospital, Mahim (Fortis Associate) on June 20. Around 70 people attended the camp. Pic/Sameer Markande

The more challenging task at hand has been to convince those who earn their livelihood through begging and sex work. Kusum, a sex worker, says that the pandemic-induced lockdowns have hit them hard, with many living a hand-to-mouth existence. On Monday, when a vaccination drive was organised for sex workers from Kamathipura at Parel’s Wadia Hospital, only three trans members made it to the drive. “They are worried that if they take the vaccine and fall ill, they won’t be able to do work for a few days. Right now, none of them can afford that, and it’s understandable.” 

GAURAV has been distributing dry ration to those taking the vaccine. “This way, they are at least assured that food is on the table, if they cannot step out of home.” 
Even when it comes to India’s vaccination data, those who belong to “the other” category are more or less unaccounted for. As of July 1, according to data available on the CoWin website, 17,98,01,932 men and 15,46,26,410 women were vaccinated. Data for the “other” category, which would also comprise the trans population, has not been made available. This skewed data is complicated by the fact that trans individuals shy away from keeping ID proofs. 

Kumar Shetty alias Kusum, the president of GAURAV, says the need is to spread awareness among “gurus” in the trans community, who in turn would motivate their “chelas” to take the jab

Tinesh Chopade, advocacy manager at The Humsafar Trust, which organised a drive along with In Harmony and WISE this week, says that a majority of the people in the trans community either don’t have an Aadhaar card, or are currently in a transition phase, and hence, don’t use it as an ID proof. “We thought that it would at least make sense to begin by encouraging those who have an ID to get the vaccine,” says Chopade, of the drive, which saw around 150 people attend.  Many also do not have Internet access, and can’t register themselves on the CoWin app or even book a slot for free vaccines.  

The organisation has been trying to reach out to the right person in the BMC to facilitate vaccinations for those without identity documents. “Unfortunately, we have not been able to get in touch with the right people to initiate that kind of conversation,” says Chopade.

Tinesh Chopade, advocacy manager at The Humsafar Trust, says that a majority of the people in the trans community either don’t have an Aadhaar card, or are currently in a transition phase, and hence, don’t use it as an ID proof. This is impeding the efforts

With HIV infection widespread within the community, the fear around COVID-19 has increased manifold. “We have seen a lot of deaths within the community, but unfortunately, there is a data gap and we don’t have accurate figures,” says Chopade.

Earlier this month, researchers in South Africa found potentially dangerous Coronavirus mutations in a 36-year-old woman with advanced HIV. The woman was reported to have carried the Coronavirus for 216 days and during this period, the virus gathered more than 30 mutations.  Some of these mutations have been seen in variants of concern. It was, however, unclear whether the woman had passed on these mutations to others. Chopade adds, “During the initial lockdown months, many of the HIV positive patients were so terrified that they didn’t visit their healthcare centres to take their medication. Our outreach workers then started delivering the medicines to their homes.”

Is the vaccine safe for them? Chopade says that in order to gain some clarity on the issue, the team at Humsafar conducted a series of live sessions with senior doctors, including Dr Raman Gangakhedkar, who was the Head, Division of Epidemiology and Communicable Diseases at the Indian Council of Medical Research (ICMR), before retiring in June last year. Speaking with mid-day, Dr Gangakhedkar says that when it comes to those who are immunocompromised, “in case the HIV infected individual is not taking antiretroviral therapy regularly and has immunosuppression reflected as detectable viral load and/or low CD4 counts, then the antibody titers that one sees after getting the vaccine, will be lower when compared to an immunocompetent host”. “But, even if the titers are less, we should not be worrying about it. At this point, they need to be protected against development of severe COVID-19 disease or death. The risk of death due to COVID among HIV infected individuals is two folds higher. The vaccine is their only way out, along with COVID-appropriate behaviour,” he says.

Dr Gangakhedkar further says that the assumption that immunocompromised patients are likely to develop severe side-effects to the vaccine is untrue. “Most of these serious events are extremely rare, even if they occur. They have to understand that the risk does not increase just because they are immunocompromised. There is also a fear that some vaccines contain live adenovirus. But one must remember that this adenovirus does not replicate in the body and hence, does not cause its infection.”

An issue, however, was seen with the Sputnik V vaccine, which uses a cold germ called adenovirus type-5 to carry the genetic material of SARS-Cov-2 into patients’ cells to trigger an immune response. Over a decade ago, an experimental AIDS vaccine that relied on a similar approach, had led to increased HIV infections. Research for that vaccine was eventually halted. “This was reported only in one of the studies, and it has never been reported subsequently,” says Dr Gangakhedkar.
 
Raj Kanaujiya is a trans male, who is currently undergoing hormone replacement therapy (HRT). He says that when the vaccine programme was rolled out, community members were wary about taking the shot, fearing drug-drug interactions—some drugs if used in combination, can either worsen the effect of one of the drugs, or potentiate the effect of the other.

Dr Rahul Pandit, Director-Critical Care, Fortis Hospitals Mumbai and member of Maharashtra’s COVID-19 taskforce, says that while such “patients were not included as part of the vaccine trials, it can be safely assumed for now, that this [kind of interactions] won’t be seen in the case of the COVID-19 vaccines”.

Kanaujiya who is part of Umang, a support group at Humsafar, has been taking this message of medical professionals to those on HRT. “I have also been putting up videos on social media, discussing when one can go back to HRT after taking vaccines, after speaking to experts. We also ran competitions, sharing poetry and art related to the vaccines. Now that I have taken the vaccine, I am hoping that this would motivate others to take the shot as well. The point is that we have to take the vaccine, irrespective, and that’s the message we need to deliver loud and clear.” 

With the trans community being neglected in the vaccine trials, the need of the hour, says Chopade, is to conduct more research, so that they have enough scientifically-backed data to instill confidence within the community. Dr Pandit, too, feels, that every section of the society needs to be made part of future trials and research. 

This is the only way, agrees Chopade, to counter the mistrust around vaccination.

12,000 
Approx. number of transgender people in Mumbai 

022-26673800 For vaccine-related queries, call Humsafar Trust from  Monday to Friday between 10.30 pm and 7.30 pm

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