Life on the edge:
COVID-19 and HIV in India

In late March 2020, the government of India ordered a nationwide lockdown to curb the spread of COVID-19. Measures taken by the government, such as a ban on public transport and authorization to travel for medical supplies, caused many challenges for people living with HIV – especially those living in the poorest areas. Eldred, Maitri and Loon share their stories on the difficulties faced by people living with HIV in accessing HIV and related services during the COVID-19 pandemic lockdown in India...

Eldred TellisMumbai, India

Eldred Tellis

Mumbai, India

I am the Founding Director of the Sankalp Rehabilitation Trust. I started working with drug users on the streets, helping with their problems, in Mumbai over 37 years ago and then became involved with drug rehab work in the early ’80s. Now, I am actively engaged in helping our clients living with HIV, HCV and TB access the medicines they need. We also have a drop-in centre that offers opioid substitution therapy.

The lockdown in India during the COVID-19 pandemic has restrained us in many different ways. Our staff who live in far-flung suburbs are unable to get to work. We can only maintain those activities that rely on our peers on the streets and are within a walking radius of our drop-in centre. Our nurse/counsellor and an outreach worker have kept the centre running. I kept myself available by living in the office since 25 March 2020 when the lockdown started; I am able to do most jobs, including handling emergencies.

Our street clients are at a major disadvantage: they do not have proper identification because a permanent address is a requirement for most identity documents. This means that they are unable to get essentials, such as a ration card, bank account and driver’s licence. And this is why they do not qualify for much of the government relief measures in the package announced. Also, with the closure of religious places and railway stations, their ability to earn daily is ruined. We had to try to provide them with things to meet their basic needs, such as meals and soap. Sharing injecting equipment becomes the norm because we are unable to reach those who are further away from our services.

Fortunately, so far, we haven’t seen any of our clients affected by the coronavirus. However, most people who inject drugs are declined treatment because health services are overwhelmed due to the pandemic. Also, many hospitals have become “COVID-19-only” centres.

Not many people would have believed that the lockdown would be so long and painful. It was quite a difficult time for most people. Many had no work and no savings. Also, we never thought it would extract such a big cost from our healthcare system. Many healthcare workers were directly affected and we already had a very low ratio of health workers per million people. Our clients are mostly long-term migrants who have lost ties with their families at home and have no plans to go back.

In Mumbai, the municipality seems to have done a fairly good job with the resources at hand. There have been limitations, but testing has increased all the time, even if we can’t say the same for the rest of the country.

We are also lucky that Mumbai is a city of people who always rise to the challenge at hand. We have seen it time and again, whether it be disasters like floods or a terrorist attack. The spirit of Mumbai has few parallels.

Maitri LakraNew Delhi, India

Maitri Lakra

New Delhi, India

I have been living with HIV for the past two decades. I worked as a coordinator for the Bengal Network of Positive People over a decade ago and then a peer counsellor for the Delhi Network of Positive People. I have worked tirelessly, assisting people living with HIV in accessing services and treatment in the public health system. As an activist, I have participated in protests against drug stock-outs and free trade agreements that undermine access to medicines for people in developing countries.

For the past two years, I lived in pain with ulcers in my mouth and was diagnosed with tongue cancer in March 2020. Due to the pain, I was unemployed for the past year, unable to speak or eat properly, and had no means to pay for costly cancer treatment. I was in the more vulnerable category due to pre-existing HIV, and doctors said I would take more time to recover than other clients.

The doctor in the cancer department of the All India Institute of Medical Sciences (AIIMS), Jhajjar, a government hospital, said that I needed to start treatment as soon as possible. However, on the day I was supposed to go for my tests, I discovered that the hospital had been converted to a COVID-19 facility. New cancer clients were told that all appointments were cancelled.

A few days later, I started to bleed profusely from the tongue. My haemoglobin fluctuated and my weight dropped. I approached the government hospital near my home, one of the most respected medical colleges and treatment facilities in the country. They admitted me in the emergency section to stabilize me. But they refused to start cancer treatment. I approached the Delhi High Court, which ordered AIIMS, Delhi, to start my treatment.

One requirement to start treatment was to have my viral load (VL) for HIV tested. But COVID-19 testing was a priority in the public health system and VL testing for HIV was not available, although I had given a sample. I witnessed first-hand the massive disruption of HIV services due to COVID-19. It was as if we did not exist. I had to go to a private lab for testing.

I have just finished chemotherapy and radiation sessions. My ulcers have started to heal. Most importantly, I have to work towards improving my weight, which has fallen to 24kg.

There were a few instances of discrimination during my cancer treatment. Staff of Fortis Hospital, a private hospital chain, approached me after reading news in a daily newspaper about my inability to get treatment in the government sector. They called me to their hospital to discuss subsidized treatment.

During chemotherapy, I faced many instances of discrimination. My HIV status was written in big letters on receipts for chemotherapy. The attitude of hospital staff would change when they saw it. During chemotherapy sessions, I was not given a bed, but was made to sit on a chair away from others. The staff would try to push my number to the last in line. But there were also acts of kindness. At times, my treating doctor intervened to ensure that I did not have to wait for so long.

The government’s response to health sector challenges from COVID-19 is not adequate. While every care should be taken to control COVID-19, neglect of other diseases is unacceptable. HIV services are adversely affected. Tests and diagnostics have suffered, which reflects in the quality of treatment. People living with HIV and other co-morbidities are facing additional challenges as I have conveyed in my story. It is difficult to raise our voices against discrimination because it is difficult to mobilize the way we did before – through meetings with the health ministry and HIV programme and through protests.

Based on my experience, I would say that people living with HIV and their networks should fight for timely diagnosis and continuation of services. They should also raise issues of discrimination and lack of services for chronic diseases as they face more troubles if they are not treated in time. If need be, legal recourse should also be tried so that people living with HIV do not suffer the brunt of the pandemic.

Loon GangteNew Delhi, India

Loon Gangte

New Delhi, India

I am the founder and President of the Delhi Network of Positive People (DNP+) and a regional coordinator for south Asia at the International Treatment Preparedness Coalition. I am living with HIV, I have hepatitis C, I have tuberculosis and I am a drug user: I am many key populations in one.

When COVID-19 started in Wuhan, I was very worried about it reaching my country. Before India’s lockdown, we wrote to our National AIDS Control Organization to ask what it would do when the government announced a total lockdown when there would be no public or private transport on the roads. How would we reach the ART centre to access our monthly quota of ARVs? We cannot afford to miss even a single dose. We have to take our ARVs every 24 or 12 hours, no matter what; it’s non-negotiable.

We suggested dispensing multi-month supplies of ARVs, which was eventually done, as well as allowing networks, organizations and others to be involved in ensuring that people have access to ARVs. Our letter was, I think, well accepted, although some thought that I was crazy because there was no lockdown yet. But when the lockdown came, as we anticipated, many people could not reach hospitals and ART centres because public movement was restricted and strictly enforced. Only a handful of essential service workers, like medical staff, media and police, were allowed to move around, and there were police barricades every few kilometres in all localities.

DNP+ had bought some ARVs. On 17 March, we printed a poster inviting people who were having problems accessing their HIV or HCV treatment due to COVID-19-related emergencies to call their “friends at DNP+”. We included mobile phone numbers. The next day, two staff members pasted this poster in all 11 ART centres and an HCV treatment centre in Delhi. We got lots of calls. For 45 days, three of us ran around on our motorbikes for 10-12 hours a day delivering medicine while three staffers in the office phoned clients and sorted out medicines. For the first 10 days, we had no permit. We put a banner on our motorcycles, which read “HIV and Hepatitis C medicine provider”, and added a big red cross. We later got a curfew pass from the Delhi police. In those 45 days, we distributed to around 700 people. Over 100 were not on our records, but we delivered to them anyway. What we managed to do was negligible; I believe that most people missed out on ARVs.

We also distributed ART in neighbouring states like Uttar Pradesh, Haryana and Rajasthan, going as far as Agra. Most of these clients are on second- and third-line regimens. We are going to see a big impact on people living with HIV as they are the poorer part of society in India. They face livelihood and economic issues. We managed to distribute food and supplies to just a few families.

It is our moral responsibility to enable access to ARVs because we know that adherence is required. I have seen less stigma against people living with HIV during this pandemic. People who would normally not disclose their status to us now do so because they want the medicine.

After almost three months of lockdown, everything is gradually coming back to normal, but no treatment has started for people who have been newly diagnosed as living with HIV and HCV. Almost all ART centres in Delhi have become COVID-19 centres and many big hotels and religious places are also becoming COVID-19 centres. We do not know when this will end. If we focus solely on COVID-19, we might save people from COVID-19, but others will die due to HIV, hepatitis or something else.

Before the lockdown, we closed our offices, reduced staff and kept only one of four sites open. In India, our population is enormous, and even before COVID-19, public hospitals were overcrowded. It is really difficult for the health sector to handle a new disease on top of this. The sector is doing its best, but it is not enough.

In the HIV community, we must care for and connect with each other. My advice is to not fear, but to be smart and careful and protect ourselves and our fellows. We can do better as a community than by ourselves. We should treat everyone as a potential hazard, taking universal precautions. That’s the best we can do.