Caught in the middle

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 ldquoBut I donrsquot identify with that person anymore I donrsquot even call myself by that namerdquo she tells us over a phone callParghi a Mumbaibased transwoman has had to wait indefinitely to get the vaccine because she wasnrsquot sure how the health staff would react if she walked into a centre with her Aadhaar card ldquoI am a completely different person now It would have been an awkward moment for me and I wasnrsquot comfortable being judged by people who have no idea about my life or personal historyrdquoIt 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 ldquoI was relieved actuallyrdquoshe admits ldquoThe staff was reassuring and I didnrsquot have to offer any explanationsrdquoOver the last two weeks a couple of drives have been organised for the cityrsquos transgender community The response despite a slew of awareness initiatives has been underwhelming Rendered invisible during the first and second wave of COVID19 the cityrsquos trans community is now facing a more pernicious issue of vaccine hesitancy which threatens to put several members already battling health issues at riskKhushi 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 cardKumar 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 playSome members in the trans community are still bound by the traditional guruchela gurushishya relationship which Kaustubh Sonalkar cofounder WISE Woman of India Sustainable Empowerment a platform that trains and nurtures trans people says is most important to tap into ldquoItrsquos 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 donrsquot take the vaccine they simply wonrsquotrdquo The risk factors are higher says Sonalkar because they all live in large groups in small houses where social distancing is impossibleKaustubh Sonalkar Raj Kanaujiya and Dr Rahul PanditKusum says that several gurus have not been allowing their lsquochelasrsquo to take the vaccine because they have heard of instances of people dying even after getting both the doses ldquoThere 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 themrdquo A few of them were forthcomingWhile there are about 12000 trans people in the city only 70 of them turned up for the first drive they organisedThe cityrsquos first vaccination drive for transgender persons was organised at SL Raheja Hospital Mahim Fortis Associate on June 20 Around 70 people attended the camp PicSameer MarkandeThe 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 pandemicinduced lockdowns have hit them hard with many living a handtomouth existence On Monday when a vaccination drive was organised for sex workers from Kamathipura at Parelrsquos Wadia Hospital only three trans members made it to the drive ldquoThey are worried that if they take the vaccine and fall ill they wonrsquot be able to do work for a few days Right now none of them can afford that and itrsquos understandablerdquoGAURAV has been distributing dry ration to those taking the vaccine ldquoThis way they are at least assured that food is on the table if they cannot step out of homerdquoEven when it comes to Indiarsquos vaccination data those who belong to ldquothe otherrdquo category are more or less unaccounted for As of July 1 according to data available on the CoWin website 179801932 men and 154626410 women were vaccinated Data for the ldquootherrdquo 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 proofsKumar Shetty alias Kusum the president of GAURAV says the need is to spread awareness among ldquogurusrdquo in the trans community who in turn would motivate their ldquochelasrdquo to take the jabTinesh 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 donrsquot have an Aadhaar card or are currently in a transition phase and hence donrsquot use it as an ID proof ldquoWe thought that it would at least make sense to begin by encouraging those who have an ID to get the vaccinerdquo says Chopade of the drive which saw around 150 people attend Many also do not have Internet access and canrsquot 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 ldquoUnfortunately we have not been able to get in touch with the right people to initiate that kind of conversationrdquo says ChopadeTinesh Chopade advocacy manager at The Humsafar Trust says that a majority of the people in the trans community either donrsquot have an Aadhaar card or are currently in a transition phase and hence donrsquot use it as an ID proof This is impeding the effortsWith HIV infection widespread within the community the fear around COVID19 has increased manifold ldquoWe have seen a lot of deaths within the community but unfortunately there is a data gap and we donrsquot have accurate figuresrdquo says ChopadeEarlier this month researchers in South Africa found potentially dangerous Coronavirus mutations in a 36yearold 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 ldquoDuring the initial lockdown months many of the HIV positive patients were so terrified that they didnrsquot visit their healthcare centres to take their medication Our outreach workers then started delivering the medicines to their homesrdquoIs 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 midday Dr Gangakhedkar says that when it comes to those who are immunocompromised ldquoin case the HIV infected individual is not taking antiretroviral therapy regularly and has immunosuppression reflected as detectable viral load andor low CD4 counts then the antibody titers that one sees after getting the vaccine will be lower when compared to an immunocompetent hostrdquo ldquoBut 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 COVID19 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 COVIDappropriate behaviourrdquo he saysDr Gangakhedkar further says that the assumption that immunocompromised patients are likely to develop severe sideeffects to the vaccine is untrue ldquoMost 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 infectionrdquoAn issue however was seen with the Sputnik V vaccine which uses a cold germ called adenovirus type5 to carry the genetic material of SARSCov2 into patientsrsquo 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 ldquoThis was reported only in one of the studies and it has never been reported subsequentlyrdquo says Dr GangakhedkarRaj 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 drugdrug interactionsmdashsome drugs if used in combination can either worsen the effect of one of the drugs or potentiate the effect of the otherDr Rahul Pandit DirectorCritical Care Fortis Hospitals Mumbai and member of Maharashtrarsquos COVID19 taskforce says that while such ldquopatients were not included as part of the vaccine trials it can be safely assumed for now that this kind of interactions wonrsquot be seen in the case of the COVID19 vaccinesrdquoKanaujiya who is part of Umang a support group at Humsafar has been taking this message of medical professionals to those on HRT ldquoI 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 thatrsquos the message we need to deliver loud and clearrdquoWith 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 scientificallybacked 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 researchThis is the only way agrees Chopade to counter the mistrust around vaccination12000Approx number of transgender people in Mumbai02226673800 For vaccinerelated queries call Humsafar Trust from Monday to Friday between 1030 pm and 730 pm