As HIV activists disrupt PEPFAR hearing, an expert explains the damage Trump has already done to U.S. global AIDS fight

The morning of February 13, at a congressional hearing on the future of the U.S. global HIV program PEPFAR (President's Emergency Plan For AIDS Relief), which the Trump administration has brought to a crashing halt in many parts of the world, a handful of activists from longtime HIV service groups including Health GAP and Housing Works, rose just as an official from the right-wing Heritage Foundation began to testify and chanted, “PEPFAR saves lives! Restore AIDS funding now!” 

In video posted on social media, activists are seen being quickly and roughly pulled from the room, just as Rep. Brian Mast, chair of the House Foreign Affairs Committee who was holding the hearing, says into the mic, “I guess these guys don’t watch the news. They didn’t realize that PEPFAR was one of the many programs that did prove to be lifesaving, so the funding was restored.”

But that doesn’t seem to be entirely the case at all, based on reports from PEPFAR workers in various countries who have been joining a regular, 1,000-plus person call organized by Health GAP since the Trump administration first froze PEPFAR on January 20, Trump’s inauguration day. Often, they describe receiving no official restart-work order since the supposed un-freeze and say that the flow of meds and other crucial tools like diagnostic tests has not resumed.

That’s why, on February 10, the longtime global HIV prevention advocacy group AVAC (AIDS Vaccine Advocacy Coalition) filed, with the Journalism Development Network (JDN), a lawsuit against the Trump administration seeking emergency relief from the freeze on federal funding for foreign assistance. As described above, the freeze has led to an abrupt halt of medications and other services under PEPFAR, which has sustained millions of lives worldwide since it was started in 2003 by President George W. Bush and is widely seen as perhaps the U.S.’s most successful foreign aid program ever. 

On February 13, a U.S. District Court judge issued a temporary restraining order putting a halt, for now, to the freeze on U.S. foreign aid. The order sets a February 18 deadline for the administration to notify the court of “the status of their compliance.”

The judge’s order is only temporary, pending the administration’s review of USAID. Thousands of staff and contractors have been fired or let go from the agency, so it’s not clear how funding would flow again.

AVAC co-filed the lawsuit because it has long been involved in the fair and ethical distribution of HIV vaccine research and other preventive measures (such as PrEP drug regimens and insertable vaginal rings) globally. 

The day after the suit was filed, by the group Public Citizen on behalf of AVAC and JDN, AVAC executive director Mitchell Warren talked with POSITIVELY AWARE about how large components of PEPFAR worldwide are still frozen despite Trump's Secretary of State Marco Rubio's vague announcement on January 28 of a waiver on the freeze for lifesaving services, what a continued freeze on PEPFAR will soon mean for countless people's lives, and why people should be concerned that some of the same pullback of access to prevention tools, especially PrEP, could soon happen within the U.S.

Mitchell, thank you for your time today. Can you give the clearest picture, as of this moment, what is happening on the ground with PEPFAR since Rubio declared an exemption for "lifesaving" resources on January 28? I've heard that many parts of the program remain frozen or inaccessible.

As far as anyone can tell, there's an intentional effort to create chaos and confusion among those in the field. Rubio's waiver is not a success because it hasn't even been operationalized. It's a guideline, not a rule, and how they want people to restart the work and receive funding is incredibly opaque. 

Also, PEPFAR is not even close to what it was more than three weeks ago, before the freeze, because the waiver is only for 60 days, with a 30-day review cycle, so program managers can't plan ahead. They're also afraid to do anything that might be seen as controversial [such as programs focused on especially HIV-vulnerable so-called "key populations," including men who have sex with men, transgender people, people who use drugs and sex workers] because they don't want their waivers rescinded after 30 days.

But what also makes this outrageous is that the waiver specifically excludes prevention tools including PrEP [as opposed to treatment for people with HIV] with the exception of pregnant and breast-feeding women, to avoid mother-to-child transmission. Anyone else at high risk who is currently on PrEP or wants PrEP is no longer allowed to get it. So we're basically telling those people that they cannot continue with what I regard as lifesaving medicine [even if it's preventive rather than for treatment].

So, are people living with HIV only on the meds they have on hand right now, with no reassurance that they can get a refill per usual?

It's different in each country. South Africa has the largest treatment program, and the drugs are primarily procured by the South African government, not PEPFAR. Also, there are a number of public-sector clinics there, so not everything has ground to a halt, but the consistency is gone. And with that goes trust in service. The word going around is that clinics are closing, so do you have to go all the way to the clinic, which is quite far for some people, to see if it's open? People are hearing on local radio that PEPFAR is suspended. So you've created so much confusion and chaos, which this virus has thrived on for 44 years—that’s how it spreads, when you criminalize and stigmatize people, start and stop treatment, sow mistrust.

Do we know generally what percentage of all recipients of PEPFAR worldwide are shut out right now?

We don't yet have those numbers. And thankfully, many recipients get multi-month drug dispensing. I think in the next month we'll understand more, as governments in the different countries try to figure out how to fill some of the stopgaps.

I've heard there’s a daily global call about the crisis organized by Health GAP, another longtime global AIDS advocacy group. 

It's got more than 1,000 people on it. It's been a great place to learn what's really happening on the ground, such as that most at risk are the key populations, because the new administration is anti-equity, anti-diversity. Those programs are particularly frozen right now and people in those key populations are feeling a lot of fear. When you have the U.S. government saying there's no such thing as transgender people, you can imagine the ripple effect.

Can you share some of the stories you've heard that illustrate the crisis?

Now, yes, foreign aid does need to be constantly reevaluated, and I don't want to pretend that every expenditure is needed. An administration can say, "We don't want to support this." But you should do it in a thoughtful, strategic way. In recent years, UNAIDS has been helping more than 30 countries develop so-called “sustainability roadmaps,” so that they could wind down their use of PEPFAR by 2030. That was the plan under Biden, to do a thoughtful handover so that no one is harmed. I'd have been supportive of that. But this is like stopping an airplane in midair to change the flight crew.

The other thing is, foreign aid is part of diplomacy, which is where the administration is being so short-sighted. We're giving a gift to other countries including China that want power. The American reputation has plummeted in three weeks.

Can you make out any rationale for the abrupt freeze despite the administration's stated goal to cut spending and crack down on diversity, equity and inclusion [DEI] efforts both domestically and globally? 

I don't want to be inside the heads of the people making these decisions. It's both heartless and stupid, because you're screwing up health systems and the American diplomatic position. Rubio said that he was going to look at all foreign assistance with an eye toward what could make America safer, stronger and more prosperous. If those are truly the measure, then PEPFAR succeeds in all three. 

So why would they do this? I think partly it's because they clearly want to show that they're ignoring Congress' will. [Funding for PEPFAR as well as many other global and domestic programs the administration has frozen have already been approved by Congress]. That's why we filed the lawsuit. For [nearly] 250 years, Congress has held the power of the purse.

How soon do you think we'll start to see illness and death abroad as a result of the PEPFAR freeze?

It often takes several quarters or even a year to see trends, but if PEPFAR is not robustly restarted, with full programming for key populations and preventive tools, then over the course of the year we'll see increases in new infections and the classic 95-95-95 goal [95% of all people in a population know their HIV status; of those, 95% are on treatment and of those, 95% are undetectable and not capable of transmitting the virus to sexual partners] will begin to slide backwards. It won't necessarily happen in every country. Some of them are going to lean in and figure out how to fill the holes left by the PEPFAR freeze. There's been consistent progress in pretty much every country that's part of PEPFAR. 

But if these programs don't really get restarted in the next three months, I think we might see repercussions even faster.

Another important factor is what data are going to get collected. In the waiver, they said that if you restart your program, you can no longer break out your data by gender, because they don't want you talking about that. So even if there's data, it won't be as robust. For 20 years under every different leader, PEPFAR did so well because it was so focused on collecting data on subpopulations and making decisions based on it. If you don't measure [results in specific key populations], you lose that. 

And it's not like an on/off switch, just flick it back on and go back to normal. These things that have taken decades to build up have been severely decimated in three weeks. It's not going to take just a day or two to get them back in shape. For every day we lose right now, it's probably weeks and months of rebuilding. We saw this during COVID; things like childhood immunizations and HIV testing and prevention efforts didn't just come back overnight.

The freeze on USAID has probably gotten more media attention than the freeze on PEPFAR because it's so much larger in its scope of work. Can you explain how the two programs interact?

Federal courts have ordered injunctions on these freezes, basically a freeze on the freeze, but we're hearing that the administration is ignoring these injunctions.

This is going to sound like a fourth-grade civics lesson, but I have to hope that ultimately the U.S. Constitution is up to this challenge. It very clearly demarcates three separate but equal branches of government—executive, legislative and judicial—and right now we have an executive branch that is ignoring the legislative [Congress, which has already approved funding for these programs] and seemingly ignoring the judicial branch, too. That, I believe, is a constitutional crisis. We saw vice president Vance say that the judiciary can't make [the executive branch] do anything. He's wrong. I suspect some of these cases will go to the Supreme Court for the ultimate test. Does the Supreme Court still believe in its role as an equal but separate part of the government? 

Can you talk a little about these HIV threats on the domestic side?

I don't think any aspect of healthcare or American life overseen by the government is safe right now. We have the issue of whether the U.S. government has the right to make Affordable Care Act (ACA) plans cover 100% of PrEP costs, as it currently does, going to the Supreme Court. And more broadly, all of the ACA is now under threat again, which also means that PrEP is.

We're also seeing a chilling effect in serving the transgender community. That's going to set us back. I don't think access to HIV meds in the U.S. is going to go away—there are too many entrenched interests in that, big pharma and insurers. But we just don't know what will happen if [vaccine skeptic and friend to those who deny that HIV causes AIDS] Robert F. Kennedy, Jr. becomes head of Health and Human Services [HHS], which is likely. I don't think we have reason to believe that HIV prevention and treatment, as well as healthcare access overall, is going to be untouched.

And then there's innovation. We're still in the early days of long-acting [injectable] HIV treatment and prevention. That's really been driven by the NIH. But right now both the NIH and the CDC are not allowed to have language on their websites about transgender healthcare. 

You know that poem “First They Came” that came out of the Holocaust? "First they came for the Socialists, and I did not speak out—Because I was not a socialist..." I really believe we're in that situation now. First they came for foreign assistance, then for transgender people, then for NIH research funding, then for fill-in-the-blank. None of us should assume that the purge has been completed in the last three weeks and now everything is okay. Everything is under threat, especially when it comes to sexuality and gender, and obviously there's no HIV response that can have impact if it doesn't include conversations about those things. Not to be alarmist, but while the last three weeks alone seem like a dystopian novel, I don't even think we're done with Chapter One.

So, what can people do?

Don't be paralyzed. It's easy to get that way because the attacks are so unrelenting and overwhelming. But get up and don't let them win. Congress has not yet exercised its power. Every American, even in a district with a very liberal member of Congress or two Democratic senators: You should be calling your electeds, particularly those with Republican electeds. Work the phones. Congress needs to know that Americans in large numbers don't approve of these actions. I understand that some people don't want to protest in the streets because they're fearful for their safety. But at a minimum, call your electeds and say, "I want PEPFAR, healthcare for trans youth, that PrEP is going to be provided by plans at no cost." Call them. The phone lines in the Capitol have never been busier, but we need to keep flooding them.

Thanks, Mitchell. Finally, what's bringing you some measure of comfort or sanity right now?

The most important thing for me is hearing from our partners both in the U.S. and around the world. It's easy to watch these headlines and get angry and feel helpless and paralyzed, but I get motivation to keep going when I hear people share my outrage and work with us on making a phone call, writing a letter. You have to look for the small victories when you can. So last week, when I saw that USAID employees rallied through the unions and got a one-week court injunction, it told me that people are fighting for what they believe in. And a judge actually appointed by Trump in his first term was the one who said that the new administration was acting incorrectly.

So, I'm not wearing rose-colored glasses, but you have to take the little wins when you can and hope to continue to build on them.