Amid a pandemic, HIV-positive patients confront reduced access to life-saving drugs, fears of social ostracisation in India

Anvisha Manral
·9-min read

The discourse around the coronavirus outbreak has shifted entirely to weathering the ramifications of the pandemic, however, beyond the devastation wreaked by COVID-19, lies the HIV crisis, far from over.

The United Nations recently warned governments against the growing risks of relegating the fight against HIV to the periphery, circling the role of inequalities in impeding the global response to the pandemic. These inequalities, which are also reflected in the global management of the HIV outbreak, will likely result in the failure to achieve global targets for this year, throwing us 'off course' in the long run.

With 2.1 million of its total population affected by HIV, many of whom continue to live on the margins of society, India is no stranger to one of the world's largest development and health challenges. And in the time of the coronavirus crisis, as several states negotiate varying phases of the lockdown, the communities affected by HIV continue fighting a unique battle.

Four HIV+ individuals and a couple of NGO workers recount their experience of the ongoing pandemic at a time when access to healthcare, despite being as indispensable as ever, is strained €" and in some cases elusive.

Bhagyashree, Kolhapur

For 45-year-old Bhagyashree, who learnt she was HIV positive in 2007, the lockdown has presented unforeseen barriers which she learnt to circumvent with time and assistance from the Network of Maharashtra People Living with HIV/AIDS (NMP+), a community-based organisation supported by India HIV/AIDS Alliance.

On a regular day, Bhagyashree works in the fields and is able to generate enough income to ensure financial independence. However, due to strict restrictions placed on mobility in Kolhapur, she hasn't been able to go to the field, or the nearest ART (antiretroviral therapy) centre to get her dose of antiretroviral drugs, the HIV-suppressing medicines ought to be taken lifelong. "When the lockdown was imposed, I was already running low on the ART (anti-retroviral therapy) drugs. Because I live alone and do not have my own transport, I became anxious about not being able to go to the clinic," recounts Bhagysharee. However, the counsellor at the Integrated Counselling and Testing Centre delivered the drugs to her after she reached out to them.

Not far from Bhagyashree's house, live a couple, whom she remembers spotting at the ART centre in the past. While several people, like the couple, maintain confidentiality about their HIV status fearing unfounded stigma and ostracisation, the lockdown has made maintaining secrecy while continuing medication during the lockdown particularly difficult. "The couple live in a joint family whose members aren't aware of their HIV diagnosis. They were unable to visit the ART centre during the lockdown without drawing attention. And so on one such day, their relatives found out about the couple's HIV status and threatened to cut ties with them. The couple then reached out to me and I counselled the family and corrected their misconceptions about transmission of HIV over three days until they were convinced that it is perfectly safe to cohabit with a person living with HIV," Bhagyashree adds.

While the lockdown may have allowed Bhagyashree to support her community, she has not been immune to quotidian struggles of a person living with HIV. "I have an inkling that my CD4 count has reduced and I seem to have lost weight since the lockdown as maintaining a proper diet has become increasingly difficult in these circumstances. I worry about not having enough to eat a lot these days."

An NMP+ representative reveals that Bhagyashree would have to go to one of the three main ART centres in Kolhapur in case she wants to get checked, as the sub-centres (located in closer proximity) have been reserved for the dispensation of medical supplies.

Samina Ali*, Pune

A new mother, Ali gave birth to a boy just five months ago, soon after moving to Pune from Mumbai. As someone living with HIV for three years, it was expected that she would receive appropriate postnatal care. However, from ART non-adherence due to limited availability of the required drug to not being able to breastfeed, Ali's experience of motherhood as well as the lockdown has been rife with anxiety and dread.

An Indian patient looks on at a small roadside clinic in a slum in New Delhi. Getty Images/Andrew Caballero-Reynolds
An Indian patient looks on at a small roadside clinic in a slum in New Delhi. Getty Images/Andrew Caballero-Reynolds

Representational image for a small roadside clinic in New Delhi. Getty Images/Andrew Caballero-Reynolds

"I missed the ARV (antiretroviral) dose for about 20 days during the lockdown as I could not go to the ART centre to renew my prescription. Initially, the NGO workers could not reach me either as the police wasn't allowing any movement on the roads whatsoever; some personnel were even attacked in the process of securing medicines for patients such as me." With an infant at home, it was only after healthcare workers from India HIV/AIDS Alliance came to her rescue that Ali was able to resume taking necessary medication. However, she notes that due to her fluctuating regime, she had to take the decision to not breastfeed.

"In the eighth month of my pregnancy, I had gone to the nearby centre [in Pimpri-Chinchwad] and requested the officials to issue three months' worth of supplies to me as I knew becoming a new mother would bring on its own challenges later, but I could not get the drugs despite being checked by a doctor." It's possible that Ali's transfer from one ART centre to another did not materialise in time, or that it was never initiated, as the case may be. But the non-adherence has come at an expense only Ali seems to have to bear. "I have been giving my baby formula milk for the past five months, which again, is costly."

Additionally, certain other logistical hitches seem to have exacerbated Ali's plight: a dose of Co-trimoxazole is usually administered to infants born to HIV-positive mothers for the first 18 months. However, Ali reveals she received only two such units from the government clinic nearby and was asked to arrange the rest from private chemists €" an expense too high for someone who last worked as a helping hand in a local beauty parlour. "The lockdown has made life extremely difficult for new mothers like me, and I fear for my child. Questions such as 'What will the next month be like,' 'Will I get medicines next month,' 'What if no social worker will be there to help me' routinely hound me" €" her voice trailing off as she contemplates what the upcoming months might throw at her €" "the government should have thought these things through."

Prakash Kumar*, Allahabad

In Uttar Pradesh's Kaushambi district, Prakash and his wife, both of whom tested positive for HIV roughly 10 years ago, travelled 70 kilometres to get their second round of ARV drugs in lockdown. Aside from the long transit, the lockdown hasn't caused an upheaval in Kumar's life mainly as the first round of drugs were delivered to his doorstep by the Care and Support Centre.

However, he does note that with the shift in the focus of healthcare facilities to treating patients with COVID-19, people affected by other health conditions are bearing the brunt of an overworked force. "My wife had gone to our Primary Health Centre during the lockdown. However, despite waiting for the doctor and making enquiries, she had to return home, unattended," says Kumar. While the pandemic can offer a segue into informed conversations on HIV, like Kumar, many believe not much headway has been made in the direction so far.

Institutional malfunctions aside, healthcare workers in the state say that an interrupted supply of medicines from the government has made navigating the lockdown easier for people living with HIV in UP. However, they too have certain concerns that are yet to be addressed.

33-year-old Vimlesh Kumar, employed with the Uttar Pradesh Welfare for People Living with HIV/AIDS Society, says scores of NGO workers are risking their lives each day to ensure people in outlying areas have uninterrupted access to HIV suppressing drugs, in accordance with the National AIDS Control Organisation's (NACO) directives. Yet they haven't been provided an insurance cover, even as other frontline workers appear to have been covered under a similar scheme, recently promulgated by the government. "If an employee of the National Rural Health Mission or an ART centre contracts the coronavirus, they are eligible for insurance benefits, but we are not. Therefore, it would be extremely rewarding if the government took notice of our effort and the risk involved and extended the insurance cover to include us as well," Kumar adds.

Muskan, New Delhi

Originally from Bihar, New Delhi's Muskan became HIV positive just six months ago. A transgender sex worker, she is something of a pariah in her south-west Delhi neighbourhood, and so used to being on her own. However, the lockdown days have been some of the toughest she has seen. "On one such day, I noticed I had exhausted my ARV supplies and tried going to the hospital, but was turned away by the police on the way. I showed them my green book as well, but they did not oblige."

Like all businesses, Muskan's services have halted abruptly in view of the coronavirus pandemic. As a result, her earnings have been virtually nil. To make ends meet, she has taken to begging at the nearby traffic signal with a few friends. Despite her daily labour, the medicine and food supplies in her kitchen dry up from time to time; this is when the NGO worker she speaks fondly of comes to her rescue, while aid from the neighbours remains out of question. The HIV epidemic is driven by sexual intercourse in India, and for particularly vulnerable communities such as Muskan's, free ARV treatment might not do much in helping them overcome social stigma.

"I sometimes wonder what the outcome would be if the people in my locality €" those who have shunned me because of my profession, which to me, is simply work €" discovered about my HIV status. For now, I have learnt to seek solace in the fact that my HIV diagnosis is limited to me, my two friends, and the NGO worker who has helped me immensely so far, and that I still have a roof over my head," she says.

*name changed to protect individual's identity

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