South Africa: It’s The ‘Donald Disease’ That’s Making Us Sick

As politicians, activists and researchers duke it out from labs and clinics and press conferences, those who have the most to lose from the HIV funding cuts told Bhekisisa they have been left to fend for themselves. Which is bad news for all of us.

Our so-called HIV “key populations” — men who have sex with men, transgender women, sex workers and people who inject drugs, and, in Africa also young women — have been hard hit ever since the Trump administration stopped most of its HIV funding in February.
Key populations have a much higher chance of getting HIV than general populations which is why Pepfar, over the past decade, allocated most of its funds to programmes working with such groups.
With the 12 specialised key population clinics in South Africa funded by the US government, and now shuttered, getting treatment at government clinics has been difficult, if not impossible, for some.
As one sex worker we talked to told us: “It’s like crossing the freeway every day the way we’re living now. One day, I know I’m gonna die.”
“Hello, sis. How are you? I hope you’re fine. I mean, I’m not.”

A lot has been going on out there, he told Bhekisisa in the voicemail, one of the many we recently received.

“You know, I’m a gay guy. I have sex with other men, without wearing condoms now, because when I try to fetch them from my local clinic, I’m told I get judged and told I want too many. You know what’s happening in our industry.”

We will call him Nkosi. Because he has sex with men and because his industry is sex work and because no one in the small community where he lives knows that he is gay or what he does for work. He even has a “girlfriend” so people will think he’s straight.

Sex work has always been a dangerous profession. But ever since the Trump administration stopped most of its HIV funding in February, it’s become even more risky.

The World Health Organisation says gay and bisexual men like Nkosi’s chance of contracting HIV through sex is 26 higher than that of the general population. Male sex workers are even more likely to get infected with the virus .

That is what makes sex workers, as well as gay and bisexual men, what researchers call a ” key population ” in the HIV world. Other key populations are gay and bisexual men, transgender people, people who inject drugs, and, in Africa, also young women between the ages of 15 and 24.

Because so many new HIV infections happen in these groups, the US government’s Aids fund, Pepfar, has, for the past decades, invested most of its funds in programmes working with these groups.

But the 12 specialised clinics for key populations, supported by the US government’s Aids fund, Pepfar, have now been shut down.

Gone, too, are their health workers specially trained in how to work without discrimination. Gone is their tailor-made HIV treatment and testing services; their specialised mental health support; and the condoms and lubricants they handed out for protection against HIV and other sexually transmitted infections. Gone are the two-monthly anti-HIV jabs and that some of these clinics handed out as part of studies — and the daily anti-HIV pills, which they distributed without any judgement.

Although government clinics also stock the daily anti-HIV pill, which, if used correctly, can reduce someone’s chance of getting HIV through sex to close to 0, people like Nkosi, research shows, are often treated badly by health workers at state clinics, making them wary to return.

Preventive medicines like the daily pill are called pre-exposure prophylaxis, or PrEP, because they stop infection by preventing a germ such as HIV from penetrating someone’s cells.

“So sometimes I don’t have PrEP,” says Nkosi. “A partner can tell me he is on PrEP, but I don’t trust that. Because where is he getting PrEP? Where am I going to get it? The black market?

“I don’t know if it is even the real thing. Is it a counterfeit? Lube? That’s another thing — you use everything, anything, as long as it’s got jelly in it. The last time I did that I had an itchy penis for a week.”

Nkosi calls the domino effect of the Trump administration’s decision to pull funding “the Donald disease because it is being caused by this guy, one man.”

“It’s like crossing the freeway every day the way we’re living now. One day, I know I’m gonna die.”

What’s with key populations?

When Health Minister Aaron Motsoaledi called a press conference in May to present his “18 facts” about the crisis, eight of those points were about what government is doing to make sure the patients from those specialised clinics — over 63 300 patients — were taken care of and that their files have been transferred to the nearest government facility .

But why is there so much focus on these communities?

UNAids says more than half of all new infections in 2022, around the world, came from key populations — and infections don’t stay within those groups.

“Even the most self-interested people should be heavily invested in treatment and prevention of these populations,” says Francois Venter, who heads up the health research organisation, Ezintsha, at Wits University. “There’s no clean, magical division between key populations and general populations. It’s a Venn diagram of married men sleeping with sex workers, of drug-using populations interacting with your ostensibly innocent kids, gay men with your straight presenting son, all needing HIV prevention and treatment programmes.”

Although we have medicines like PrEP to prevent people from getting infected with HIV and antiretroviral drugs (ARVs) for HIV-infected people, which, if taken correctly, reduce their chance of transmitting the virus to others to 0, having the medications available is just a small part of the solution. What’s more difficult is to get medication to people and to convince people to use it, and to use it correctly.

Studies, for example, show that getting people to use the anti-HIV pill, also called oral PrEP, each day, has been a struggle — and those who do use it, often don’t use it each day , the less often it’s used, the less well it works.

Moreover, United Nations targets that South Africa needs to reach by the end of 2025, show that we struggle with convincing people who know they’re infected with HIV, to take treatment — and stay on it. Researchers estimate that of South Africa’s 8-million people with HIV, 1.1-million people who have been diagnosed with HIV , are not on treatment.

Some of the 1.1-million choose not to start treatment, but an even larger proportion, who do go on treatment, cycle in and out of it.

Pepfar programmes funded thousands of “foot soldiers”, such as community health workers, adherence counsellors, data collectors and youth workers, who went into communities with mobile clinics to find people who stopped their treatment, or to make ARVs easier to get by making it possible for people to collect their medicine from community halls, shops or private pharmacies close to where they live.

That’s why having lost at least half of those workers — we’re likely to lose the other half at the end of the US financial year in September — is such a tragedy. And why, if we do nothing to replace them, modelling studies show, there’s a high chance that we see up to almost 300 000 extra HIV infections over the next four years and a 38% increase in Aids deaths .

The difficulty with state clinics and key populations

Government clinics are mostly not geared towards key populations , because they serve everyone. And because many health workers’ own prejudices so often interfere with the way in which they treat patients such as sex workers, gay and bisexual men, or teens who ask for condoms or PrEP, such groups frequently feel uncomfortable to use state health services.

Stigma and discrimination in public clinics — doled out by security guards, cleaners, health workers and patients in waiting rooms — keep people away from HIV treatment and prevention. Researchers who surveyed over 9 000 people in key populations found that less than half, and in some cases not even a quarter, said they were treated well; about one in five said they were blocked from getting services.

Motsoaledi says he’s trying to fix that by now training 1 012 clinicians and 2 377 non-clinician workers at government facilities in non-discriminatory healthcare. But despite similar trainings having been conducted for years already, discrimination remains rife.

Because funding cuts mean already understaffed government health clinics now have even fewer staff, many people with HIV, or those wanting PrEP, have to travel further for treatment, or wait in long queues.

As politicians, activists and researchers duke it out from labs and clinics and press conferences, many of those most at risk, like Nkosi, have been left to fend for themselves.

Here are some of their stories — we collected the stories via voice notes with the help of health workers who worked for Pepfar programmes that have now been defunded.

Female sex worker: “My child is going to be infected”

“Yoh, life is very hard. Since all this happened, life has been very, very hard.”

“I have tried to go to the public clinic for my medication. But as sex workers, we are not being helped. We are scared to go to the government clinic to treat sexually transmitted infections because we are seen as dirty people who go and sleep around. We even struggle to get condoms. We are now forced to do business without protection because it is only our source of income and it’s the way that we put food on the table. My worry now is that I am pregnant and my child is going to be infected because I’m not taking my ARVs, and I have defaulted for two months now.”

Transgender woman: “The future is dark”

“I’m a transgender woman. My pronouns are she.”

“When the clinic closed, I was about to run out of medication so I went to the government clinic in my area. I introduced myself to the receptionist and the lady asked me what kind of treatment I was taking. I told her ARVs and that I’m virally suppressed [when people use their treatment correctly the virus can’t replicate, leaving so little virus in their bodies that they can’t infect others], so I can’t transmit HIV to others.

“The lady told me that they can’t help me and I need to bring the transfer letter. I told her that the clinic is closed so I don’t have the transfer letter. I asked to speak to the manager and the manager also refused to help me. The manager! How can she let someone who is HIV-positive go home without medication?

“I had to call one of my friends and she gave me one container. If you’re not taking your medication consistently, you’re going to get sick, you’re gonna die. And the future? The future is dark.”

Migrant farm worker: “Lose my job? Or risk my health?”

“When we were told that the clinic was closed, I was actually in another town trying to get a seasonal job on the farms. But when I went to the nearest clinic, I was told that I needed to get a transfer letter. So I ended up sharing medication with friends. But then their medication also ran out.

“Then I got a job on the farm. Before the mobile clinics came to the farms and we had our clinical sessions there. The nurse was there, the social worker was there. Now we went to the clinic and spent the whole day there because we had to follow the queues. And because our jobs were not permanent jobs, you know, you just get a job if you apply by the gate. So if you are not there by the gate on that day, then the boss will automatically think that you are no longer interested in the job, so they employ someone else.

“I went to the government clinic and asked to get at least three months’ supply. But the clinic said no because it was my first initiation so I had to come back. So I went back to the farm to see if I could still have my job. I found that I was no longer employed because they had to take up someone else.

“What am I going to do? If I go to the clinic, I stand a chance of losing my job. If I stay at my job I am at risk of getting sick.”

Transwoman: “I’ll just stay home and die”

“Accessing treatment is difficult because of the long queues. Even that security guard keeps on telling me to go away when I ask for lubricants and he tells me every time there’s no lubricants.

“We need the trans clinic back. I need to speak to somebody, a psychologist. On Tuesdays we had our psychologist come in, and the doctor. But now I don’t have the funds to go and see even a psychologist.

“It is bad. It is super bad. I don’t know when I last took my meds. Another friend of mine just decided, oh, okay, since the clinic is closed and I no longer have medication, I’ll just stay home and die.”

By Allafrica