It’s the ‘Donald disease’ that’s making us sick

“Hello, sis. How are you? I hope you’re fine. I mean, I’m not.” 

A lot has been going on out there, he tells Bhekisisa in the voicemail, one of the many we’ve 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 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 US President Donald Trump’s administration stopped most of its HIV funding in February, it’s become even more risky.

The World Health Organisation says the chances of gay and bisexual men like Nkosi 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 why researchers call sex workers a “key population” in the HIV world. Other key populations include gay and bisexual men, transgender people, people who inject drugs, and, in Africa, young women between the ages of 15 and 24.

Because so many new HIV infections happen in these groups, the US President’s Emergency Plan for Aids Relief (Pepfar), has, for the past two decades, invested most of its funds in programmes working with these groups. 

But the 12 specialised clinics for key populations, supported by Pepfar, have now been shut down.

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

Though 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 zero, people like Nkosi, research shows, are often treated badly by health workers at state clinics, making them reluctant to return.

Preventive medicines such as the daily pill are called pre-exposure prophylaxis (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. 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 one man.

“It’s like crossing the freeway every day, the way we’re living now. One day, I know I’m going to 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 the government is doing to make sure the patients from those specialised clinics — more than 63,300 people — 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?

The Joint UN Programme on HIV/Aids says more than half of all new infections in 2022, globally, 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 leads 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 children, gay men with your straight-presenting son, all needing HIV prevention and treatment programmes.”

Though we have medicines such as 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 zero, 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 daily; the less often it’s used, the less well it works. 

Moreover, UN 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 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 losing at least half of those workers — with the likelihood of losing 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’ prejudices so often interfere with how they treat patients such as sex workers, gay and bisexual men, or teens who ask for condoms or PrEP, such groups frequently feel uncomfortable using 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 more than 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 nonclinician workers at government facilities in nondiscriminatory health care. But despite similar training 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 battle 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 our only 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 going to die. And the future? The future is dark.” 

Migrant farmworker: ‘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, you know, you just get a job if you apply at the gate. So if you are not there at the gate on that day, then the boss will automatically think that you are no longer interested in the job, so they will 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.”

Trans woman: ‘I’ll just stay home and die’

“Accessing treatment is difficult because of the long queues. Even that security guard keeps 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 and the doctor come in. 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, OK, since the clinic is closed and I no longer have medication, I’ll just stay home and die’.”

* These stories were edited for length and clarity.

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.