From being unable to procure antiretroviral drugs if they are HIV positive to loss of income, the struggles of transgender persons have been neglected by policymakers.

How lack of healthcare and loss of livelihood is affecting trans personsRepresentational image
Delve Gender Wednesday, April 01, 2020 - 13:42

Over the last week, we have seen several visuals and reports of how the lockdown for COVID-19 has pushed disadvantaged persons – migrant workers, daily wage labourers, sanitation workers – further into a corner, and how the state’s policies to deal with them have been reactive.

“But no one – especially the authorities – have thought about transgender persons, and what we are facing right now,” says Christy Raj, activist and community correspondent with Video Volunteers, who is also a trans man.

TNM spoke to several transgender persons and learnt their survival is in jeopardy after the lockdown. From not being able to procure antiretroviral (ARV) drugs if they are HIV (human immunodeficiency virus) positive to losing their livelihoods, policymakers and health departments have neglected their struggles while tackling the fallout of the pandemic.

HIV+ transgender persons struggle to procure medicines

Transgender persons living with HIV get their medication once a month or once in three months depending upon the stage of the illness they are in. The medicines are distributed monthly for patients in stage one and quarterly for those in stages two and three.

Vyjayanti Vasanta Mogli, an RTI activist and co-founder of Telangana Hijra Intersex Transgender Samiti, has already gotten 25-30 calls over the last 10 days from frantic HIV+ transgender persons who are now unable to get their dosage.

Ellie*, a 29-year-old trans woman from Karnataka’s Bidar, tested positive for HIV seven years ago. The state government distributes two major drugs for patients in stage three – Raltegravir and Darunavir – at Bengaluru’s Bowring Hospital, the mother centre for ARV drugs in Karnataka. Ellie’s illness is now at stage three, but for her and many others procuring medicines has become a herculean task as she is unable to make her quarterly trips to Bengaluru to get them due to the lockdown.

“Medicines for stage three HIV are not available at the district level. For persons in stage one and two, the medicines are available at district hospitals but that too is risky to go out and get medicines,” Ellie says.

Ellie currently has enough medicine to last for 23 days. However, if the state government does not intervene to disburse the medicines in a timely manner, her health will deteriorate.

Speaking to TNM, Dr Rangaswamy from the ARV therapy centre in Bowring Hospital says that skipping medicines is risky, especially for patients who are in stage three where the person has AIDS (Acquired Immunodeficiency Syndrome) and the immune system is no longer able to defend itself against the HIV virus.

“If the ARV tablets are not taken daily, then the viral load increases and there are chances of the virus becoming resistant to the medicine. For people in stage three with AIDS, their CD4 cell count will drop. These are the cells that provide immunity to a person. Taking the drug daily and on time is the only way to manage the virus,” he explains.

According to doctors at Bowring Hospital, although there is no shortage of ARV medicines the biggest problem is that the patients are not able to access the medicines. Just like Ellie, Seema*, a trans woman in Bengaluru, has to travel 10 km to reach Bowring Hospital. Seema tried to board one of the 180 BMTC buses plying in the city for essential service persons earlier this week. However, the driver and the conductor told her to get off as she did not have a commuting pass.

“I have medicines for one more week. Since it is a serious issue, I thought the police and BMTC workers would understand but they are not allowing us to step outside. We earn our livelihood by begging or through sex work. Due to COVID-19, we are unable to go out and work. We don’t have money or a vehicle of our own to go to the hospital,” Seema rues.

Demand for door-to-door delivery of medicines

In neighbouring Tamil Nadu too, patients with HIV are struggling to procure ARV medicines due to the lockdown. Grace Banu, founder of Trans Rights Now Collective, says that the medicines are available only at district hospitals, hindering access.

And though the Tamil Nadu government announced on Tuesday that passes would be issued to people who need to travel to district hospitals to collect the medicines, the problem is that HIV positive persons are immune-compromised and hence afraid to go to district hospitals, where those with the novel coronavirus infection are admitted.

“The government must begin door-to-door delivery of ARV medicines immediately in all states,” Grace states.

Doctors at Bowring Hospital say that they have requested the government to distribute the medicines for patients in stage three at designated district hospitals so they can be delivered to their respective homes as well. When TNM contacted the Karnataka Health Department, the officials said that door-to-door delivery of medicines for HIV positive patients would begin from Tuesday.

“We will begin door-to-door delivery of ART medicines from this week (starting April 1). Patients have to call any of the helplines and ask for medicines to be delivered. They will have to give their address and phone number and also the name of the centre they generally go to collect their medicines,” Jawaid Akthar, Principal Secretary for Health and Family Welfare in Karnataka, told TNM.

Problems that pre-transitioning and transitioning trans persons face

The lockdown also puts pre-transition or transitioning trans persons in a tough spot. For instance, Vyjayanti says she doesn’t know if the people who had managed to raise money for their gender affirmation surgery before the lockdown will cover the expenses later.

“Given the way the economy is going and how tied up healthcare workers are going to be in the near future with COVID-19, there is some fear that the cost of the surgery may increase,” she says.

Further, delays in transition and accessing hormone replacement therapy may push transgender persons into mental health issues such as depression. “We are anyway looked at as a burden when we ask the state to make gender affirming surgeries accessible and ask for it as our right. Now, with the healthcare workers already so overburdened, if a transgender person wants to have a surgery it will be looked down upon more and will be lower on their priority list,” Vyjayanti adds.

In an earnest appeal, Vyjayanti asks for people to be humane and considerate in these difficult times. “Try to help as many people as you can directly. Whether it is a transgender person, your domestic help, a daily wage worker. Don’t just rely on online campaigns or government schemes. That Rs 500 can make a lot of difference to a transgender person or someone who is struggling to survive at this time,” she says.

Stigma makes healthcare elusive

It has also been repeatedly pointed out that social distancing is not something everyone can practice – it is something only the privileged can do. This holds true for trans persons as well. Vyjayanti says that transgender persons often live together in communes of 5 to 25 people.

“Can you imagine the situation if just one of them coughs or runs a fever in the current situation? It leads to so much panic and pandemonium,” she says.

The stark reality of stigma has become a double-edged sword for the community, as access to healthcare becomes difficult.

“It is very easy for transphobic doctors and healthcare workers to refuse to examine a transgender person or turn them away on the pretext of social distancing, or preventing overcrowding,” says Sunil, a community based researcher who is a trans man.

Swetha Sudhakar, founder-director of Born2Win, a social welfare trust started by a group of former sex workers and trans persons, also points out that apart from hormone replacement therapies and ARV treatment, transgender persons face other health issues just like anyone else – like diabetes, blood pressure and so on. With the loss of income due to the lockdown, many of them do not have money to buy medicines.

“You see, most people have a family. We are shunned by ours for our gender identity. A transgender person has no one to take care of them, except other trans persons. And all of us can be equally worse off. We have to fend for ourselves,” Swetha says.

Loss of livelihood, struggle for food and ration

Jhanvi* talks about the work that she has been doing in the past week with apparent resignation. Like most trans women, she knows that her options to earn a livelihood are majorly begging and sex work. However, with the 21-day lockdown in place, she is able to do neither. So she has had to resort to online sex work.

“I thought I was done with it,” she says. “And I am not even the most underprivileged of the transgender women out there. Yet, I don’t have a source of income so I am back to doing this. It is so demeaning, and sometimes the customers don’t even make the payment. But I don’t have any other options right now,” Jhanvi tells TNM.

Vyjayanti points out that for many transgender persons, their food supplies have either already depleted or are fast depleting.

“For many people – especially the privileged – they have their phones and apps where they can order food. They can walk into a grocery store, practise social distancing, buy food in large quantities and stock up. But trans persons are not generally employed in organised jobs – they don’t have the resources, income nor the access to do the same,” she says.

“It doesn’t help that catastrophes like these affect the weak most intensely, not so much the strong and rich,” she adds.

Christy, who lives with 10 other persons in a one-hall-kitchen-bathroom setup, says that while he is earning by working at Video Volunteers, his income is not enough to support all 10 people. For the past few days, he has been working with some others from the community to try and get donations for ration and groceries, which have also become expensive and unaffordable at local grocery shops.

“In some places, people were only eating once a day, that too just rice with water,” he tells TNM.

Recently, they were able to get donations from a Rotary Club. “Whatever we got in our area, we distributed to the waste pickers and daily wagers who lived nearby also. We now have groceries for around a week,” Christy says.

While the Indian government has been taking some steps to distribute ration through the Public Distribution System (PDS), the problem is that most transgender persons do not have ration cards, points out Chennai-based Shanavi Ponnusamy, who took Air India to court for not giving her a cabin crew job because of her gender. Shanavi, who is the first to graduate from her family, is an engineer, model and actor, and is also presently unemployed. “I wish they allowed us to get ration items based on our transgender ID cards at least,” she says.

Not only jobs, it is well-known that it is very difficult for transgender persons to find accommodation. While some state governments have announced a rent freeze, Christy says that this will not be extended to trans persons as the landlords will just not agree. And with the loss of livelihoods, not just food but rent, buying medication or anything else becomes a challenge.

Vulnerability to violence at home

For some trans persons who are not yet out to their natal families or who have unsupportive families, the lockdown has forced them to live at home in a difficult and often violent environment.

Sherlin Jose, a 20-year-old who is studying to take her Chartered Accountancy exams, was turned away by her family when she came out as trans. “There is no going back for me,” she says.

“But for many who are not yet out to their families and now forced to live with them in the lockdown, it is very tough. You have to hide who you are, hide your feelings, your gender. Many families can be violent if they find out,” she says.

Karnataka helpline numbers: 9745697456, 080-46848600, 080-66692000 & 104 Arogya Sahayavani

Tamil Nadu helpline number: 04429510500, email: ncov2019@gmail.com

Telangana and Andhra Pradesh helplines: 104 for health, 108 for ambulance and 100 for police

Kerala helplines: 0471-2309250 0471-2309251 0471-2309252

* Name changed