Lay low or mobilize? HIV researchers agonize over how to respond to Trump administration’s attacks on science

“I have chronic pain from anxiety...some of my colleagues have received stop-work orders...there’s mass confusion as to what our next steps are...we are unclear about what language to use in our grants around sex and gender...some of us have built our entire research program around diversity, equity, inclusion and accessibility...everything that our work stands for is under attack...it’s a scary time...we've going back to the Dark Ages.”

Those are the words of a prominent and longtime HIV researcher at an academic center well-known for its HIV research. The researcher was speaking under strict anonymity (“I have to be super careful...” ) about the extraordinary attacks that federally funded researchers have sustained in only the first month of the Trump 2.0 administration’s war on anything that so much as touches on issues of race, gender (especially transgender topics), sexuality, disability and equity and inclusion for these groups. 

Since his January 20 inauguration, Trump and his allies—many of whom outlined these very attacks on science in their Project 2025 blueprint released last year—have done everything from freezing nearly all National Institutes of Health (NIH) grants and loans (and apparently ignoring a court order to unfreeze them) to slashing support for research centers’ indirect (overhead) costs to 15% of grants from a traditional baseline as high as 60%—a move that has left such centers in a quandary about how to support themselves. The administration has also used bureaucratic moves to paralyze research, such as prohibiting prospective grants from being entered in the Federal Register (basically the public record), which unlocks the review process for such grants.

“Right now we’re just trying to survive,” the anonymous HIV researcher told POSITIVELY AWARE. “We’ve all been knocked down, so we’re just trying to stand on two feet and keep our programs afloat right now.”

But if the researcher seems fearful to put their name to relatively inoffensive words in the face of a massive research crisis, consider that, of the more than 50 prominent HIV researchers POSITIVELY AWARE contacted over the week of February 17–21, even offering them anonymity if it would allow them to speak freely and clearly, the one researcher quoted here was among the tiny handful who agreed to talk to PA even without their names attached. 

‘I don't think we have any choice but to speak up. Self-censorship is its own way of setting back science.’

“One of the things we’re all trying to figure out right now is the extent to which there might be retribution for things we say in the media,” said Patrick Sullivan, an epidemiology professor at Emory University's Rollins School of Public Health in Atlanta whose CDC- and NIH-funded research focuses on why there is less uptake of and adherence to HIV meds and PrEP among certain groups, such as Black gay men in the South or people in rural areas far from medical centers, and how gaps in HIV health outcomes can be closed.

Sullivan said he agreed to speak to PA with his name attached because “I don't think we have any choice but to speak up. Self-censorship is its own way of setting back science.”

That dilemma was echoed by another longtime prominent researcher with formal ties to the NIH. The administration’s ban on research dealing with its vague term “gender ideology,” said this researcher, “is making people feel like they have to take out the explicit transgender parts of their research, which is also making them ask themselves if they're complicit in disappearing an entire population.”

Many researchers did not get back to PA although they have spoken with this writer multiple times in the past several years. Some of the few who were reached gave reasons why they couldn’t talk (“I’m with patients today,” “I’m in a meeting”) and then never followed up.

It should also be noted, in fairness, that a handful of researchers did get back to PA and offered to speak on the record once this story was in its final stages and could no longer accommodate more voices.

Can researchers meet the moment?

THE COLLECTIVE FEAR on the part of the HIV and adjacent research communities raises serious questions about whether scientists and researchers—an inherently cautious and methodical population that can jealously guard its own research, funding and staffers and generally lacks the public brio of activists—has what it takes in this unprecedented moment to raise their heads from their individual benches and defend their work before a hostile administration in one united, bold voice. 

Hanging in the balance are lines of research that, together, point the way out of not only the domestic and global HIV epidemic, but overlapping health crises—from tuberculosis and hepatitis B and C to other sexually transmitted infections, substance use and new and emerging viruses like COVID and bird flu.

‘This is stuff that U.S. researchers have never lived through. The human instinct is to freeze, whereas those of us who have been activists have decades of experience fighting back publicly.’

Mark Harrington, executive director of the longtime HIV research advocacy nonprofit Treatment Action Group (TAG), said that he thought the research community was generally silent in this moment because they are not only fearful of repercussions but shell-shocked. 

"Their whole ecosystem, the entire biomedical research-and-development infrastructure, is being destroyed, just like PEPFAR [the 22-year-old U.S. global AIDS relief program started under Republican president George W. Bush, which the Trump administration has frozen despite a court order] and USAID [the much larger U.S. global relief program] are being decimated right now,” he said. “This is stuff that U.S. researchers have never lived through. The human instinct is to freeze, whereas those of us who have been activists have decades of experience fighting back publicly."

Said another well-known official at a prominent research center who spoke anonymously because they weren't authorized to speak on the record: "If I were in school for public health right now as I was many years ago, I would probably drop out. There's absolutely no reason to continue if the future of public health in the U.S. looks this bleak, if the federal government is not going to allow you to have a productive career at an institution." 

"Researchers are still in deer-in-the-headlights zone," continued this official. "Even though it was all spelled out in Project 2025 for a whole year prior, they showed a complete lack of imagination and thought everything was going to be fine, and now it's come back to bite them. They've been caught flat-footed and flabbergasted. I'm hoping that they start doing something. They need to talk more publicly about the fact that we are erasing a whole new generation of researchers."

Yet another researcher said they truly worried whether their community could, or even should, do the work of activism. "Is the research community prepared to take on the mantle of loud advocacy in defense of our work?" they asked. "No. Up to this point, we've had the luxury of a division of labor, us doing our jobs while activists do theirs."

Harrington said he hoped that, at very least, researchers started banding together by state and telling their representatives in D.C., especially those from red states, what is at stake—millions of federal dollars that nearly all states receive to support crucial research done in their home districts. "They need to show them the cost of not only lives lost but dollars and jobs lost for their districts,” he said.

Harrington also said he hoped that this year's CROI retrovirus conference [March 9–12 in San Francisco], one of a few times annually when researchers and activists cross paths, would be an opportunity for the two communities to collaborate on charting a plan of resistance. 

"Maybe we can help them come out of their crouch," he said, noting that he was attending. "We activists and researchers have built a coalition over the past 35 years, ever since 1990, when Dr. Anthony Fauci [who at that time was director of  NIAID, the NIH's infectious disease division] told the federal AIDS Clinical Trials Group to open up to us. Together, we built the infrastructure that created modern effective HIV treatment and rolled it out around the U.S. and then the world."

Harrington said that researchers needed to more publicly tell the stories of how research eventually leads to extraordinary breakthroughs in everyday people’s health. He pointed to the relatively recent breakthrough finding that taking a single 200 mg dose of doxycycline within 72 hours of having sex can dramatically reduce gay and bi men's and transgender women's risk of getting gonorrhea, chlamydia and syphilis—known as doxy-PEP, a protocol already successfully in use by thousands. (The protocol is currently being studied for use in heterosexual and cisgender populations.)

“That finding came partially out of NIH research,” he noted.