Q&A: Tackling advanced HIV disease and stigma in key populations

Men who have sex with men can be particularly vulnerable to contracting HIV and also find it hard to access the proper care and treatment if they get infected. In several African countries, for example, homosexuality is illegal and punishable by imprisonment or even death. Men who have sex with men may face difficulties accessing appropriate care because of fears of prosecution, social stigma, and a lack of health care workers trained to treat LGBTQ patients and other groups considered at high-risk.

Identified as key populations by UNAIDS, this group includes men who have sex with men, sex workers, transgender people, people who inject drugs, and prisoners and other incarcerated people.

In a 2019 report on the status of advanced HIV disease treatment in 15 countries, Médecins Sans Frontières acknowledged that several African countries — including Malawi, Nigeria, South Africa, and Uganda — have made progress regarding policy and implementation plans on managing Advanced HIV Disease, or AHD.

But the situation for the African LGBTQ community — and men who have sex with men in particular — remains a challenge in countries like Malawi, with little current information available to guide best practices.

Aniz Mitha is a gay man, a former sex worker, and executive director at Community Health Rights Advocacy in Malawi. He spoke with Devex about the challenges of living with HIV and obstacles still facing key populations in accessing treatment.

This conversation has been edited for length and clarity.

In what ways are key populations such as sex workers or men who have sex with men at extra risk of advanced HIV disease?

The fact that [sex workers] have sex as a means of earning a living sometimes means they have inconsistent or no condom use, which puts them at higher risk. In addition, most MSM [men who have sex with men] and MSW [male sex workers] are hesitant to disclose medical complaints to health care workers for fear of being judged, which often leads to wrong treatments — which in turn leads to them being at a higher risk.

What role does self-stigma play for key populations in need of care for advanced HIV disease and their access to the right diagnostics and treatments? And how can HIV efforts be improved to serve key populations better?

Self-stigma makes them feel like they are not worth being treated equally or getting quality HIV care like everyone else, which in turn leads to key populations not accessing the right care they need. Often [fear of] being judged — in addition to self-stigmatization — restricts them from accessing quality health care.

Training health care workers on key population-friendly services minimizes stigma and promotes openness. Another thing we’ve seen work well is establishing drop-in centers where HIV services are provided in a way that creates a safe haven for key populations.

Do you know someone who has progressed to AHD?

We lost someone who was our client in [the city of] Blantyre. He tested HIV positive but he was not coming to collect his antiretroviral treatment. We did ask him why he wasn’t going … people knew that he was gay [and] a male sex worker. Because of self-stigma, he didn’t go to the hospital to collect the ART on time, and he developed advanced HIV, and he died.

I think that COVID also contributed, because to go to the hospital he would have needed to take a minibus or a taxi. That was a time when people used facemasks, and social distancing was observed. So for him to walk from where he was staying — it was a bit far from the hospital — to get two taxis going to the hospital, it was even harder for him because he was already sick, so we lost that client.

As someone living with HIV, do you have experience getting CD4 tests?

Malawi has a “test and treat” [strategy] whereby they don’t really look at the CD4 count. But when I started, personally, I had to get the CD4 count. The moment you are tested positive, they must put you on treatment, so they don’t have the CD4 count [test]. But it’s there on request.

When you’ve had CD4 testing, was it ordered by a health professional, or did you seek it out yourself?

So I had the flu, and I was coughing some blood. When I went to the hospital, I didn’t know that I was HIV positive. Then when they tested me positive, I immediately asked for my CD4 count so that I should know when to start the treatment.

Is it hard for members of the LGBTQ community in Malawi to access diagnostics too?

It is very hard, even for the places [where] we have health care workers who we have already trained. For example, we send [a patient] to go to that hospital, and we find a health care worker who is already trained in KP-friendly [key population] services, but then that person isn’t there, and they find someone else at the health center or at the public hospital. They might refuse to treat them because they say that they are not trained on how to deal with KPs — that is another challenge as well.

So, what we are doing right now is talking with the ministry [of health], with the government, especially the department of HIV so that they look into this. We cannot train all of the health care workers at the hospitals because we don’t have the funds. The government knows about our work and the issues of KPs, but they must also train their own health care workers on issues of KP-friendly services.

Visit the knowyourcount.devex.com series for more coverage on how to make diagnostic tests and treatment for advanced HIV patients more accessible by sharing insights from practitioners, policymakers, and people living with AHD. You can join the conversation using the hashtag #AdvancedHIV.