Pumza Mooi is worried. A resident of Port Elizabeth, South Africa, she is one of 2.5 million people in the country living with HIV but not currently on antiretroviral therapy.

“I’ve decided that I have to start,” said Ms Mooi. “No matter how strong my CD4 count or how low my viral load, it will never be as good as on HIV treatment. It is something I must do for myself, for my children and for those who look up to me. I am scared of getting sick,” she said.

Ms Mooi’s decision to start HIV treatment comes at a time of uncertainty for people with a compromised immune system, owing to the risk of a severe COVID-19 infection. There is currently no evidence that people living with HIV have any greater risk of acquiring COVID-19, but there is concern that a COVID-19 infection could be more severe for people living with HIV who are not taking antiretroviral therapy.

South Africa is under a 21-day lockdown to try to slow the spread of COVID-19 and Minister of Health Zweli Mkhize has urged everyone to take precautions to prevent infection, emphasizing the importance of everyone knowing their HIV status, getting tested and immediately starting treatment should they test positive.

“The thought of catching COVID-19 frightens me,” said Ms Mooi. “It is scary to think that I already have one virus [HIV] that my body is dealing with. I am asking myself, is my body strong enough, is my immune system strong enough?”

Ms Mooi acquired HIV many years ago, when the prevailing advice was to commence treatment if the patient experienced a reduction in their CD4 count, thus falling ill. She has been monitoring her status ever since. In 2016, the World Health Organization published new guidelines recommending lifelong antiretroviral therapy for all children, adolescents and adults, including all pregnant and breastfeeding women living with HIV, regardless of their CD4 cell count. In other words, anybody diagnosed with HIV should start treatment straight away.

UNAIDS is actively monitoring the impact of COVID-19 and working with networks of people living with HIV, the government and development partners to ensure that the concerns of people living with HIV are heard and reflected in the COVID-19 response. This includes identifying constraints on health services, encouraging longer, multimonth prescriptions of antiretroviral medicine and helping communities to provide solutions.

Social networking

Life under lockdown is especially difficult for people living in informal settlements and UNAIDS has recognized the challenge of achieving self-protection, social distancing and containment in such areas. Added to this are fear-inducing and inaccurate reports about the coronavirus. “There is a lot of information going around but not all of it is true,” Ms Mooi said. “I am reminding people that the government has given us a WhatsApp number where we can get good information, and not to worry about other information. If it is true, the government will tell us.”

Luckily, Ms Mooi has a robust support network after she shared her HIV status online many years ago. “I know I will be looked after,” she says. She moderates Facebook and WhatsApp support groups for people living with HIV that have dozens of members, ranging in age from a 16-year-old born with HIV to a woman of 62 who has lived with HIV for many years.

Over the past few years, many in the group have shared their experiences of living with HIV and their experiences of taking HIV treatment, confronting stigma and discrimination and staying motivated. Their consensus is that taking and adhering to HIV treatment is the best option, Ms Mooi said.

Right now, there is a new topic in the groups. “They are worried about COVID-19,” Ms Mooi said. “I tell them don’t worry, stay home and practice good hygiene.” For the time-being, everyone knows they will have to sit tight and take care of each other remotely, to get through extended isolation.

The group fosters discussion mostly among women, although men are listening in. “I get messages from men asking why we don’t discuss issues affecting them, but if they don’t disclose they won’t always get the help they need,” she says. “I encourage men to share their stories and let us help each other.”

Looking ahead

Like most, Ms Mooi is already looking forward to being able to move about more freely again and to start HIV treatment. She is doing what she can to look after her family and to encourage her networks of people living with HIV. “We are doing the things we are told to do, like washing our hands and keeping away from other people, and just praying and hoping for the best,” she said.