What is it like living with HIV during a pandemic?

One way or another, COVID-19 has left its mark on pretty much every nation in the world and there can be no disputing the fact that, in many places, populations that were already extremely marginalised – such as the lesbian, gay, bisexual and transgender (LGBT) community and people living with HIV – have been on the receiving end of a double-edged exclusion, stigma and, in some cases, violence.

Not only could they no longer access treatment like their lifesaving antiretrovirals (ARVs) but some also found themselves being blamed for the spread of a mysterious new epidemic.

The Elton John AIDS Foundation’s COVID-19 Emergency Fund, administered by Frontline AIDS, has been lifesaving for some LGBT people – particularly those living with HIV.

Unemployment for people living with HIV can be disastrous

Bridget Kandela is a nurse with the Zambia Health Education and Communications Trust (ZHECT) in Kabwe in Zambia’s Central Province. She has seen first-hand the disastrous impact that the coronavirus pandemic and the subsequent lockdown restrictions have had on the lives of people most affected by HIV in the area.

“The COVID-19 pandemic has touched people living with HIV in many ways because, when there was partial lockdown, people were restricted in their movements,” she says. “Some who were in full-time employment were told to quit their jobs so would get affected mentally. When one loses employment, everything – even budgeting – becomes distorted.

“Others were not managing to meet their nutritional needs,” she continues. “Someone who is not well nourished just can’t operate in their normal way. People living with HIV need nutritional food to boost their immune system, they need a well-balanced diet, so when someone is not in employment that is really a challenge.”

Forced to “go back in the closet”

The challenges to people’s mental health in the past year have been wide-ranging. Sarah Chirwa is head of admin and operations at Dignitate Zambia Limited (DZL), a Frontline AIDS partner focusing on the human rights of LGBT communities as well as sex workers, people living with HIV and people with a disability.

She describes how some LGBT people effectively had to “go back into the closet” for fear of their safety when lockdown restrictions came into force. She says: “Some community members were being verbally harassed in their homes. Some were outed and chased out by their guardians. We recorded a very high level of mental health distress because they’re living in homes with people who can’t accept them. We also recorded some suicides by community members.

“Mental health issues going on in the community are quite alarming, they are literally rising by the day. We still need financial support for basic needs, for the community to protect themselves from COVID. Most community members can’t even afford masks and sanitiser.”

Support for LGBT people

DZL supports LGBT clients to access healthcare services – as well as legal support in the event of discrimination, detention and violence.

Ali, 22, confirms just how difficult it has been to stay safe, both in terms of COVID-19 and his sexual health. “I am not HIV positive, but I am on PreP [pre-exposure prophylaxis]. After the coronavirus outbreak, it was difficult to access medicine due to a lack of masks. There was a fear of contracting the virus. It was a challenge because there was nowhere medicine could be accessed.”

Jomell, a young person living with HIV and another of DZL’s clients, watched their income dry up almost as soon as the pandemic struck. “I am a part-time sex worker,” Jomell says, “and COVID-19 has affected me because the way I used to earn a living before has dropped – most people are scared to meet and to be close to each other, so money has become a challenge.”

Emergency fund provides a lifeline to LGBT people

If it hadn’t been for a modest COVID-19 Emergency Fund grant – administered by Frontline AIDS in partnership with the Elton John AIDS Foundation – Sarah is convinced that the consequences for many of the LGBT community members that DZL works with would have been even worse.

“In the neighbourhoods where many of them stay, it’s very hard to protect yourself from COVID because they live in close proximity,” she explains. “So I think we would have lost a lot of them, especially the ones living with HIV. I think that most of them would have ended up on the streets because they couldn’t afford to pay for their homes anymore.”

DZL used the grant to pay rent for a period of three months for community members most at risk of homelessness, as well as essential groceries such as cooking oil, potatoes and mealie-meal to be able to make the staple food nshima. The organisation worked with local healthcare providers to support people living with HIV to access ARVs through mobile outreach and teamed up with psychosocial counsellors to offer therapy to those really struggling with their mental health as a result of the pandemic.

Funds for sanitiser and groceries help life go on

“DZL has done a lot for me,” says Jomell. “They have given me health packages like sanitisers and stuff like that for me to stay safe and my friends as well.” Kapansa, a young trans woman living with HIV, was unable to continue her job as a peer promoter when lockdown prevented outreach services from operating as usual. She was also supported by the grant. “DZL gave me money to pay rent and bought groceries for me. I feel happy because they helped me, they brought medicine for me at home and life goes on, unlike going to public clinics where people will be pointing fingers at me.”

Ali is equally unequivocal about the lifeline extended to him. “People from DZL came to our home,” he says. “They brought some groceries for me, which lasted for two months. They even gave me money. I have a talent in hairdressing so I started a salon by buying hairdressing supplies. I appreciate their help because things are getting better for me slowly. I am grateful to wake up in the morning and think of going to work.”

Sarah says: “What we are looking into now is a safe house, especially during the pandemic. We can place the community members most at risk there for let’s say a period of three months while they figure out what to do next with their lives.”

About our programme

Launched in April 2020, the Elton John AIDS Foundation’s COVID-19 Emergency Fund was set up to sustain HIV prevention and care for the most marginalised communities during the pandemic. It is administered by Frontline AIDS. To date, the Fund has supported more than 43 organisations to reach those in the greatest need.