The Trump administration is going full steam ahead on its terrifying project of dismantling the country's defenses against HIV. In February, it gutted the U.S. Agency for International Development, which plays a crucial role in supplying other countries with HIV treatments. On March 21, the U.S. Department of Health and Human Services terminated the Adolescent Trials Network, or ATN, which is the only national research network focused on adolescents and young adults who live with, or are at risk for, HIV. The National Institutes of Health terminated grants related to PrEP, medications that can prevent HIV infection. And this week, the administration laid off scores of workers at the Centers for Disease Control and Prevention who focused on HIV prevention.
Since its formation in 2001, ATN has enrolled more than 30,000 people in over 150 studies, many of which focus on the ongoing HIV epidemic, and expanded access to PrEP. But it has a more expansive remit, also studying the rising incidence of STIs, and mental health and substance abuse disorders in young people. Nevertheless, the network's termination letter used the same language seen in letters from the National Institutes of Health that intend to eradicate "diversity, equity, and inclusion" in scientific research.
The infectious disease epidemiologist Tara Kerin had started working on an ATN study focused on the antibiotic doxycycline, which has a growing reputation as a "morning-after" pill for STIs. Last year, the CDC recommended this STI-prevention strategy—called doxycycline postexposure prophylaxis, or doxyPEP—for cis men and transgender women, citing evidence that it has been shown to reduce syphilis and chlamydia infections by 70 percent and gonorrhea by about 50 percent. Although evidence suggests that doxyPEP would be effective in other populations, such as cis women or transgender men, the CDC did not yet have enough clinical data to recommend the drug to these other populations.
The ATN study Kerin was attached to aimed to solve that problem—testing if the antibiotic also prevented STIs in adolescent and young cis women. "Women in general are usually left out a lot of studies," Kerin said. "So having this specifically looking at how we can prevent STIs in women would have been really great." But the study was canceled on March 21.
Kerin was not a full-time federal employee. But this ATN grant, which was already funded and approved, would have covered most of her salary for the next four years. In fact, ATN projects "have been mostly paying my bills since 2017," she said. Now, the grant's cancellation means Kerin will be out of work in a few months. In the U.S., thousands of scientists like Kerin depend on grant money from the federal government to pay their salaries. As federal funding for their research is cut, these scientists risk losing their jobs, their labs, and their careers. I spoke with Kerin about how this study would have given a generation of women more control over their health, her fears of a medication-resistant strain of HIV, and why the health of Americans is inextricable from the health of the world.
This interview has been edited and condensed for clarity.
I would love if you could tell me about how you decided to become an infectious disease epidemiologist.
I actually wanted to be a lawyer. And then I took a couple of classes and decided, no, I don't. I don't want to talk about politics all day! Which is hysterically why I thought, oh, I'll go into science.
I ended up changing my major. I got a degree in neuroscience and ended up going to Penn State, where I got a degree in bio-behavioral health. I was doing a lot of lab work—you know, the pipetting behind the bench. A couple years later, I ended up getting a job at the CDC. I was working in the rotavirus lab. Rotavirus is basically the stomach flu for kids.
In the U.S., [rotavirus] is no big deal. It's a pain. I actually think I remember when me and my siblings got it—we were just all basically stuck in the bathroom. But in developing countries, it was a leading cause of childhood death. You get dehydrated, just because they don't have the same resources that we would have. So it was a worldwide problem, even if day-to-day in the U.S. we weren't bothered by it.
During that time, they also developed a vaccine, which was awesome. I was so excited about this. One thing that is obviously, extremely important is you're never going to get rid of a disease unless you get rid of it worldwide. I think COVID and the Ebola outbreaks that we had more recently have shown that with all of our abilities to travel very quickly, that also means that these diseases travel a lot quicker than they used to. At this point, if there is a disease anywhere, it can be in your backyard within a week.
During that time when [that] great vaccine was on the market, and—I mean, we're thrilled! Over the moon! You've been working on this virus, and all of a sudden it looks like, in essence you've got a preventative care for it. But as I was driving to work, there would be protest lines. They were people who were anti-vax. This is right around the time when Jenny McCarthy is getting her platform on Oprah. To me, it was just sort of this mind-blowing, like, what? You guys think these are unsafe? What's going on?
The first ATN study I was on was looking at recently [HIV] infected young adults. HIV is this wildly—I mean, it's kind of cool—wildly smart virus. First it attacks your immune system. It just goes right for the jugular: You can't fight us, because I'm directly going to fight what you fight us with. But now we have these antiretrovirals, right? So you take these pills, and it keeps your detectable level of virus gone. We now know that if you do not have a detectable level of virus—so if you take your pills pretty much every day—you take a blood test and there's no virus. You can't spread it. So you can have sex. You can have babies. You can do all of that stuff that we thought that people with HIV would never be able to do.
There have been reports of some children being able to go off the medication, and the virus doesn't appear to come back. The reason why the virus comes back is because it hides. A section of it will hide away in this little reservoir—HIV reservoirs, we call it—so the medication can't get to it there. It just stays there. And it just waits and waits and waits. It'll kind of pop its head out and be like, "All clear?" and then it will, boom. So children who have had HIV, their immune systems are a little bit more pliable. Those reservoirs might be smaller. The idea is, all right, so what if we catch people right when they get sick, these young adults that still have these moldable immune systems, and see if we can shrink these reservoirs so at some point they can go off medication? Because the meds aren't great. I mean, it's like, just take a pill. But they're not just a pill. They have side effects. They have issues. It is a pill, or a set of pills, that you would have to take every day for the rest of your life. So you know, you're looking at the way to eliminate that entirely.
Now this new one that I'm doing, or was doing for the ATN, was on doxyPEP. HIV also has what they call PrEP and PEP. Prep is a pre-sex drug—so pre-exposure prophylactic that you can take so that you are less likely to get HIV. This is great. It's sort of like [a] birth control type of thing. If you can take that, and people who, you know, "Oh, I'm thinking about having sex tonight, I'll take this," then they can be a lot more safe. There's also PEP, and that's the post-exposure. That's something you take within 72 hours, that can also help you, kind of like your plan B pill.
They have found in men, when they've looked, that it can actually prevent a whole bunch of STDs or STIs—oh, really cool. There's this post- thing you can take in 72 hours, and then you don't have to worry about chlamydia or gonorrhea or syphilis or any of that stuff. They've also done some things that have shown if you take doxyPEP before sex, much like PrEP, and again, in men, this is shown that it might be effective as a prep as well as a PEP. But this new trial that we were doing was looking at it in women. Because we don't have any data in women, or not much anyway. So that was what we were working on. And it came from the Adolescent Trial Network.
It was a really cool network. It managed to bring sites all over the U.S. If you had an idea for a project and you could get funding, you could also do it within all of these sites. One of the hardest things to do in any study is recruit people. It's a pain. I've tried to be in studies, and I'm like, oh god, this is so hard! This is not worth it! So I understand. And this sort of thing also gets you across the country, so you'll have a population that is more representative. Los Angeles does not necessarily represent the rest of the United States.
There were millions of dollars in these projects. There are a lot of ATN projects going on over time. There's been a couple hundred since the ATN was formed back in 2008—while ago, somewhere in those early aughts. So that was just completely shut down. It wasn't just the ATN that was shut down, I also work on some other HIV projects to pay my bills. All of those were shut down as well too. They're targeting HIV, which is frustrating on levels not just for me, but for science.
The grant that was just canceled—you mentioned it was going to cover the next four years of your work. How long had that been covering your work before?
It basically just got started. We had been working on the first part of the study, [which] is getting it ready. We'd been making protocols and manuals and training for staff, and getting an app made. I'm so sad about that app. I feel like that app was a lot of work for a lot of people, and it was really cool. I'm very bummed about that, not ever really getting out there.
There were three arms. One was standard of care, which is just STI education, condoms, talking about things, testing. The other one was doxyPEP on demand, so they could ask for it within 72 hours of having sex, and they would get that. And then the third one was we were assigning that group to take the doxyPEP every week, regardless of their sexual activity. So that one was the pills. I just started working on that, I guess, at the end of last summer. We were ready to launch, and I got, on Friday: Stop work completely.
Could [you] briefly cover the work that you had done for the grant, all that you had accomplished thus far?
There's a lot of paperwork to do at the beginning. Getting an institutional review board approval. You've already gotten permission from the NIH, but now you also have to go through another level of scrutiny to make sure that this study is ethical. That you have all of your ducks in a row. You have thought about everything that could possibly happen and making sure you have a plan and a backup plan. How are you going to deal with adverse events?
The standard of operating procedures—it doesn't sound like a big deal, but, boy, that takes months to get right. Again, all of those things need to be in print, every possible scenario and what you're going to do, and describing the procedure down to the smallest thing. Because, the idea is, if anybody has a question about what to do, they will have an answer. By the time an NIH study gets out and started, it's already been optimized to be a well-oiled machine.
So you have the standard operating procedure. And then every single thing that you're doing has what we call the manual of operations (MOPs) too. I had just written one on all the sample collection. There's one of how to collect hair—how far down? How long does it need to be? Where you need to put it afterward? How does it need to be stored? We were also doing swabs, both throat and rectal or front hole. We had swabs everywhere. We mostly try to encourage those to be self-collected by the participant. But we also need to be able to tell them how to do it. And also be able to tell the staff if they need to help.
There was also another one on counseling—how to counsel people for reproductive health, not just giving scripts, but also how to give the resources to everybody that they need. How to treat the STIs once they're found. Where do they need to go? How quickly? How are we making sure that we are keeping these women safe and healthy? We were a little delayed. We were supposed to have launched already, but it got pushed off until April because we had two issues. One, some of our sites were coming from another collective called the HPTN. That's the HIV trials. It's another HIV collective. And for some reason they weren't getting the money from the government. So we were like, OK, we're going to have to pause on them. Then we had another issue with the medication supplier, so we had pushed this off just slightly—which I guess, in hindsight, is for the best. Because it'd have been pretty awful to start people on something and then be like—just kidding!—and take it away. They cut us off right before our launch.
How did you learn that the grant was cancelled?
I was in another meeting, and the [principal investigator] of the study called me, which was odd. I mean, it's not odd, but, you know, a little odd. I was like, alright, well, I'm going to decline because I'm in this meeting. But I also just had a weird spidey sense about it. Then she texted me right after, she was just like, call when you can. And I was like, oh, this is not going to be good.
They told me it was canceled. I'm not gonna lie, I knew HIV would be on the chopping block. It deals with populations that a lot of that administration does not like to admit exist. So not a huge surprise. But it was a surprise how quickly it happened. I assumed it might be something where we might not be renewed. But I was not quite prepared for stopping on a Friday in March. I had a good cry, and then I got to take the rest of the day off. And then just started trying to get my ducks in a row. The thing that sucks is everybody is on a hiring freeze right now. And additionally, even pharmaceutical companies that are hiring have got hundreds of people that are super-qualified going through one [posting]. It's tough. Because I know at the end of the day, I'm probably going to end up taking a job that was for someone who has a master's, and they're going to end up having to take a job for somebody who has a bachelor's.
When you stop taking medication, the HIV pops out of the little reservoir, and it takes a look and it's like, oh, the pills are gone. Let's get going again. But it's smarter this time, and it becomes resistant to the medication you were taking. This is a problem with people who tend to stop and start their medications a lot. They become resistant to the medications to the point that the medications are a lot less effective. Back in January, when USAID was told to stop giving HIV medications to everybody, my first thought was not just that people are going to die, but: Oh crap, we're going to get a medication-resistant strain of HIV. You're not going to get rid of a disease unless you get rid of it everywhere. So all of that work we've done with HIV to get to the point that as long as you take your medications, you can have a really normal life, that just could be totally blown up, which is also very, very frustrating. It's not something you can take a switch and turn it back around.
Is there any recourse for getting another funder to move in [on the grant]?
We will be missing out on that opportunity of having the network. While this grant hopefully will live on somewhere, somehow, it will be different. And we won't have the same reach that we had with the ATN.
When these sort of studies are stopped, particularly with this one, we have prevented a generation of being able to have some sort of control over their health in the sexual landscape. And a lot of people, particularly who support the administration, may be like, oh, well, you know, kids shouldn't be having sex anyway. Well, sure. But just like birth control, it's going to happen. And we want to make sure that there's as much safety that goes on—not just with HIV, but syphilis is really bad. Gonorrhea and chlamydia can get really bad. We already know that HPV can cause cancer. These are STIs that can really mess up your life. Sure, there are treatments for these things now. But a lot of times, it's going to have more of an impact long-term.
If the grant were to be picked up by another funder, would you be able to return to that work?
It depends on how and who picks it up. But the bigger problem is that I won't be around. Unless it happens next week, which, even if you get money, it's not immediate. You apply for a grant in April, and you hope to get the money by the next January. I will be long gone at that point. I will not be in the study, but hopefully somebody else would be able to. I've already joked about all the data that I have, and trying to find a really lucky PhD student to go to: Here, analyze all of this and get it out to the world, since I will not be a part of the project!
I was curious if there was anything else about this grant or its cancellation, or your fears and concerns that we haven't had a chance to talk about, that you'd want to touch on.
It's not just the HIV grants. And it's not just all of the other ones that are being stopped. The dismantling of the NIH—and I won't even get into RFK Jr. and all that bullshit—it puts us back for so many years. Because it's not something that, in the next four years, if we get in a different administration, we can just turn this back on. Again, all of these things have been in in the works for years. Particularly if we're going to keep going back and forth on this and having an administration that wants to give money, that doesn't, that does, that doesn't—it is going to hurt our chances of research in general.
I guess what I don't really understand is how people can look at this and just be, America first and focus on America without realizing how connected we are biologically with the rest of the world.
We used to be the best in the world at this. Without our influence, other places will have the stronger influence. When we lose influence, we lose not just power—we do—we lose ground. We lose the ability to protect ourselves. Everybody wanted to be getting the American drugs for COVID. But the next COVID that hits, we'll be begging Europe for theirs.
If you have lost your job as a result of ongoing government cuts and are interested in speaking with me for this series, please contact me on signal at simbler.88 or simbler@defector.com. I would love to hear from you.
