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Portrait of Loon Gangte

Loon Gangte

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...

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. ”

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.

“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. ”

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.

“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. ”

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.