Report based on interviews with HIV/AIDS patients in India
Note from the author: I wrote this piece with a sense of earnestness that I didn’t know I was capable of. Hence, it’s not difficult to assume that I was broken when the organisation that I was interning at didn’t publish this piece, owing to organisational mismanagement. More importantly, I felt that I let down the interviewees who had trusted me, a complete stranger who reached out to them over whatsapp texts, with such delicate and intimate details of their lives. By the time I got to know that this organisation wasn’t going to publish my piece, my article was too dated for all mainstream publications. The Blahcksheep Rejects column has given rejected and unpublished pieces a new lease of life. If anything, I hope this story resonates with some of you.
COVID has disrupted the precarious balance in the lives of People Living with HIV
On the fateful night of March 24, as India announced the first lockdown to fight the Coronavirus, Angad* sleeplessly tossed and turned in his bed in his Bangalore apartment. He woke up tired after a long night of anxiously weighing his options, religiously gulping his antiretroviral medicine after brushing his teeth: a morning ritual he had been following for the past five years after he had tested positive for the Human Immunodeficiency Virus (HIV). But when the strict travel restrictions were announced, he couldn’t help but panic as he was left with only two more weeks of medicine.
“In hindsight, I feel like things didn’t turn out to be so bad,” said Angad. “But when I was living through it, it felt like my whole world came crashing down,” he added.
The lives of over 2.1 million people living with HIV went haywire when India adopted a strict lockdown towards the end of March. A majority of People Living with HIV rely on public healthcare for their treatment. Most Antiretroviral Therapy (ART) Centres are located inside public hospitals, which are now overburdened with Coronavirus patients. With the travel restrictions in place, access to ART centres has become restricted for many People Living with HIV, who are also dreading visits to government hospitals due to the pandemic. Many others found themselves locked up with their families who don’t know about their HIV status.
“I was mentally prepared to walk ten kilometres to buy the drug,” said Angad. “There were no autos or taxis for about a week, and all I could think of was my medicine.” Although he has an uncle who stays nearby and owns a car, he couldn’t get himself to ask for his help as he hadn’t disclosed his HIV status to him. Angad was finally able to buy his medicine just days before running out through an online app.
Introduced in the late-1980’s, antiretroviral drug therapy brought forth a revolution in HIV healthcare. The drugs prevent the virus from multiplying inside the body, which buys time for the immune system to rebuild its strength. However, it is necessary to adhere to the daily regimen or the virus is known to develop resistance that can cause Autoimmune Deficiency Syndrome (AIDS), which is a life-threatening condition. The UNAIDS report of 2018 recorded over 69,000 deaths due to AIDS-related illnesses, indicating that India is lagging in its goals of suppressing the virus by 2020.
The HIV/AIDS Prevention Act (2017) of India was landmark legislation that comprehensively dealt with discrimination faced by People Living with HIV. The bill, however, was controversial as it placed the onus of providing free antiretroviral therapy “as far as possible” for the state governments. Many HIV/AIDS activists claimed that this was a possible loophole that can be misused to deny free ART medicines anytime.
Many People Living with HIV (PLHIV) like Angad were in a frenzied rush to replenish their ART stock because they didn’t want to give the virus an upper hand. Angad can afford private healthcare but a majority of PLHIV rely on India’s National AIDS Control Program that provides ART medicines without any charge. If the drugs are bought from a medical store, they are priced at 3000 rupees for a month’s supply. The ART centres issue green-coloured booklets to all their clients to dispense medicines and keep a track of adherence to the regimen. However, when the lockdown measures were announced many found themselves stuck at their parent’s or partner’s home without their booklets.
“A friend of mine was in his hometown when the lockdown was announced and didn’t have his booklet,” said Angad. The procedure demands the physical presence of the booklet for the distribution of medicines through a fixed ART centre for each patient. The National AIDS Control Organisation (NACO) announced a relaxation of this rule in April and allowed ART centres to distribute medicines from all centres to anyone who produces soft copies of the booklet. Angad went over to his friend’s landlord, got the apartment keys and sent a scanned copy of his booklet. But not everyone with the booklet was able to go to the ART centres.
“What would I have told my parents when I stepped out?” Nikhil* asked rhetorically. He went back to his parents home in Jaipur when his university in Hyderabad closed its doors. Before leaving for home, he went to his assigned ART centre in Hyderabad, which provided him with medication for two months. Usually, ART centres dispense medication that lasts only for a month, but given the travel restrictions and unavailability of public transport, they have been handing over medicines meant to last two to three months.
“I should have asked for more medicines from them, but I hadn’t anticipated that the lockdown would last this long,” said Nikhil. As the two months in Jaipur drew to a close, Nikhil realised that the nearest ART centre was located in a public hospital overflowing with Coronavirus patients. Even though he had his card with him, he didn’t want to take the risk of going to a government hospital.
Nikhil decided to order his medicines online, but they all required a doctor’s recent prescription and his ART booklet wasn’t enough for them. “I contacted many doctors but they all refused to give me an online prescription without an in-person appointment,” said Nikhil. After many frantic calls, Nikhil found a doctor through a mutual contact who was willing to give him a prescription. But his troubles didn’t end there.
“I feel like one of those drug junkies when I take my medicine every night after my parents have fallen asleep,” Nikhil spoke in hushed tones. He didn’t give his home address for delivery and met the deliveryman at a nearby landmark. He stepped out of the house on the pretext of collecting a delivery for a friend. After Nikhil realised that his university isn’t going to reopen soon, he ordered another batch of medicines. This time he pretended to return the same delivery and went out. He had to shell out 9000 rupees from his stipend that he earned for research at University, for three months of medication.
The stigma around HIV in India still forces thousands of people to live a life of secrecy and shame, where they have to hide their status from their family, landlords and coworkers. The stigma is often associated with the sexual transmission of HIV amongst high-risk groups such as Men who have Sex with Men, Intravenous Drug Users, Transgender people and Female Sex Workers, who already happen to be marginalised communities. A disclosed status can expose People Living with HIV to harassment, disrespect and bullying. Nikhil narrated an incident of how he was called an ‘illiterate literate’ by an ART centre staff for living with HIV. “They said that I am wasting public money and an educated man like me should have known better,” he said. On being asked what will happen if his parents find out, he shuddered and told me he hoped that they never do.
Not everyone can afford to buy expensive ART medication in case they run out. Serious questions about access to these life-saving drugs still stand. “In a city like Mumbai, it is easier to access an ART centre,” explained Dr Nilesh Gawade, Assistant Professor at Centre for Public Health, Tata Institute of Social Sciences, Mumbai. “But how does that work in a state like Uttar Pradesh, which has 75 districts but there are ART centres in only 38 of them?” he continued.
The Government of Uttar Pradesh had enforced a strict lockdown after an initial surge in Coronavirus infections in April. Although there is a dearth of empirical evidence right now, it is unclear whether people who earlier travelled to a different district to collect their ART medicines were able to do so during the lockdown. There are growing fears amongst civil society organisations that people might have dropped out of the program due to lack of any means of transport and a general lack of finances. This could mean a resurgence of drug resistance or AIDS-related illnesses.
“Once livelihood gets affected, health no longer stays in the radar,” explained Dr Gawade. Certain communities with a high incidence of HIV such as the Transgender Community and Female Sex Workers have been especially badly hit during the lockdown. “These communities traditionally don’t have a concept of savings and transgender people, especially, survive on begging, badhaai or sex work, which is all gone now,” told Shruta Rawat, Research Manager at Humsafar Trust, an NGO working with PLHIV and the LGBTQ community in Mumbai. There are concerns that in such dire situations some individuals might start engaging in risky behaviour or putting themselves in risky positions, which will increase their chances of contracting HIV.
“We know of a couple from Uttar Pradesh that tested positive for HIV right before the lockdown was announced,” shared Leo Ganguly, Project Officer at SAATHII, a non-profit working for the rights of people living with HIV. The couple was unable to come to their office in Delhi for further confirmatory tests and treatment. It was only a month later in mid-April after guidelines were released to allow travel for those seeking to access ART medicines, the couple was brought to Delhi. Rawat from Humsafar Trust had a similar story to share about someone whose initial treatment got delayed as the lockdown kept getting extended.
Many People Living with HIV living in small towns get their medicines through NGOs or private clinics located in bigger cities. Taking cognisance of their situation, NACO allowed those who were accessing private healthcare to register and take medicines from local ART centres. “But the medicines that they give at the ART centre can be different from what you are currently taking or they might not have the drug composition that you need,” told Angad, from Bangalore. A different drug might not have the same effect or it could also have a bad reaction.
“There is a reported shortage of third-line medicines, which are the last line of defence against HIV for those who have developed drug resistance,” said Daxa Patel of the Gujarat State Network of People Living with HIV. Although only less than 1% of all HIV cases develop third stage drug resistance and require third-line medication, access to medication for them is proving difficult. State AIDS Control Societies have been running short of supply of third-line medication and are giving out medicines that last for one or two weeks, forcing some to travel every week to ART centres. Some have been forced to travel long distances frequently as the third-line medication is only available at select ART centres across a state.
State AIDS Control Societies and NGOs like Humsafar Trust and SAATHII have been working overtime to deliver ART medicines to those who can’t go out of their homes or can’t access medicines at ART centres. But there is also a growing realisation that testing for HIV has gone down. “In many rural districts, maternity camps are organised where HIV testing happens. Those camps are not happening now,” explained Dr Gawade. As migrant labourers from cities return to their rural home districts, some might not know that they are living with HIV. There is a fear that HIV might spread undetected as governments invest all their energies onto controlling the Coronavirus pandemic. There is also a concern regarding lack of access to condoms as many don’t have the luxury of buying them now. This could further exacerbate the silent spread of HIV in the future alongside COVID-19.
It may take a while for the bigger picture to emerge, but what has become abundantly clear is that living with HIV in the times of Coronavirus can sometimes feel like a fight against time and lockdowns. Angad, who has not revealed his status to his flatmate, wondered aloud on the phone, “When from a relative position of privilege and financial security I was driven to such desperation, I can only imagine what so many people must have gone through.”
“Only time will tell us how big of a mess we are in,” he added.
Kartikey is a writer, researcher and communications professional from New Delhi. He is a postgraduate in Media and Cultural studies from TISS, Mumbai. His research interests include gender, literary criticism and affect theory. In his free time he likes to cycle around, and solve sudoku puzzles.