After abruptly pausing PEPFAR on Tuesday — the U.S.-led HIV/AIDS program created in 2003 and credited with saving 25 million lives globally — the Trump administration issued an ambiguous waiver for programs that provide lifesaving humanitarian assistance earlier this week. It wasn't immediately clear whether PEPFAR qualifies for the waiver in full or in part.
Either way, the off-again, on-again messaging has created waves of confusion, including in South Africa, which has the largest PEPFAR portfolio in the world. At a a press conference on Wednesday, health minister Dr. Aaron Motsoaledi said, "So far, we haven't received any letter from the American government. Tried to contact the embassy of the US. We couldn't get them."
Some HIV clinics in the country have already shut down until they receive further clarity, such as Engage Men's Health that provides HIV treatment including crucial life-saving drugs that prevent HIV from replicating. Their website now states that they "regret to announce that, due to an immediate 'stop-work order' issued by our funder, we cannot provide any services until further notice."
Other groups have sounded the alarm as well. "We are seeing interruptions in medication supply, clinics are scaling back services and community health workers have literally been losing their livelihoods," says Ling Sheperd with the Triangle Project, the oldest LGTBIQ+ organization in Africa. "We risk undoing decades of progress, especially in communities that are already structurally marginalized."
And the confusion isn't limited to South Africa. In Uganda, Dr. Adolf Alinaitwe, a clinical HIV researcher at the Joint Clinical Research Centre, says, "I for one have received many calls from my patients asking what their fate is."
Motsoaledi dreads what stopping the distribution of antiretroviral drugs, or ARVs, would mean. "Nobody must stop taking ARVs because that would be devastating," he said. "It will be completely dangerous. When you are on ARVs and you stop, there will be serious trouble."
Here's what that trouble would look like.
The power of antiretrovirals
HIV was once a death sentence. But antiretroviral medications, taken as a single tablet each day, now allow people to live reasonably healthy lives.
"It doesn't mean that you're cured of HIV," says Dr. Susan Cu-Uvin, the director of the Providence/Boston Center for AIDS Research, "but it controls the amount of virus in your body so that you don't get very sick."
She says the drugs kill the virus at different points of its life cycle and keep it from making copies of itself. They're so effective that HIV transmission has plummeted between sexual partners and from mothers to children. By providing these drugs to clinics around the world, PEPFAR has helped lower global HIV rates and save millions of lives.
When Cu-Uvin started out as a medical doctor, all her HIV-positive patients were dying in their 20s and 30s. Today, her oldest patient is 90. (The woman discovered she had HIV in her late 60's and likely contracted it earlier.) Because of these drugs, "any person who has HIV has been given a life," says Cu-Uvin. "Stopping antiretroviral therapy means death, means sickness."
HIV lies in wait
Once someone stops taking antiretrovirals, the levels of these protective drugs begin to drop in their body. That's when HIV comes out from hiding.
"There are viral reservoirs of HIV in the body," says Dr. Chris Beyrer, the director of the Duke Global Health Institute. "We don't know where all of them are. We know some of them are in lymph nodes and in other tissues. Some may be in the brain. But either way, the virus will come back."
This means that within days or weeks, the patient will come down with what feels like a dreadful flu. "You're achy, you have night sweats, you have fever," says Beyrer. "And some people may feel like they're acquiring HIV all over again with rash and high fever, headaches, nausea."
The disease will then progress. The speed of that progression depends on a variety of factors, but becoming immunocompromised — in which the immune system is weakened and no longer able to fight off infections — is pretty much inevitable.
"Eventually, all those people will develop clinical AIDS and the very serious complications like opportunistic infections that a healthy immune system protects you from," Beyrer says.
Those infections include everything from shingles to fungal and parasitic infections to — especially in Africa and Asia — tuberculosis. Any of these can kill someone without a functioning immune system.
The grave danger of resistance
There's another problem with stopping antiretroviral treatment. The period when drug levels in the body are declining and viral levels are growing is when the virus is most likely to become resistant.
"You are selecting for resistant virus because you don't have enough drug in the body to fully suppress replication," explains Beyrer. "And if you develop resistance to one of these antivirals, you generally are resistant to the whole class."
That forces someone to move onto a second or third line regimen of drugs that are pricier and harder to get. Plus, "if you do have a resistant virus, you can transmit it," says Beyrer.
These are the reasons why public health experts are so worried.
"Without antiretroviral therapy," says Cu-Uvin, "the amount of virus in your body will bounce back immediately. The virus comes back in revenge."
And without intervention, she says death from AIDS is all but certain.
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