It’s time for some updates about big things happening at NIH, CDC, and the FDA. Some of it is good, some of it is bad, and a lot of it could be good or bad—only time will tell.
Let’s start with NIH.
If this administration is all about efficiency and reducing waste, then they sure have some odd ways of showing it. You don’t have to be a master of organizational development to know that one of the fastest ways to waste time and money is to constantly sow confusion, make rules that are unconstitutional or unpalatable, change them (voluntarily or not), then repeat over and over instead of having a well-researched, thoughtful and well-communicated plan of action that sticks. (It’s almost like the goals of this administration are to break systems, not improve them!)
Let’s look at some evidence of this:
1. BAD: First, in May the Trump administration proposed slashing the NIH’s budget for FY26 by $18 billion. This would be a 40% decrease in funding for what is one of the world’s premiere health research institutions, and the world’s biggest funder of biomedical research. They also proposed consolidating the NIH’s 27 institutes and centers into only 8 (eliminating 3 of them entirely), and dramatically slashing the federally-negotiated indirect rates (the way the NIH supports overhead costs for research at universities and medical schools) to 15% across the board. As I’ve said before, this might sound reasonable at first, but it would effectively paralyze medical research across the US. All three of these moves would be devastating to medical science in the US and around the world. This means cancer research, addiction research, Alzheimer’s research, HIV research, COVID vaccine research…all of it.
2. BAD: Then in June, NIH changed a policy about the way grants are funded—requiring institutes to fund 50% of any awards made in the remainder of this current fiscal year as “multi-year awards.” Awards with multiple years? That sounds good…but it’s not. What it means is that instead of paying for multi-year grants (which is almost all NIH grants, since medical research takes a long time to do well) across multiple years, those grants must be fully funded up front, covering all years of funding with funds from the current fiscal year. So if someone has a 5-year grant for $3 million, instead of spreading the cost of that grant over 5 years, NIH institutes need to have all $3 million available in the budget now. The effect of this is to dramatically shrink the number of grants that can be funded in a given year, because there’s only so much room in the budget. For example, the National Cancer Institute has said that with this new policy, instead of 1 in 10 grant applications it receives being funded, now they will only be able to fund 1 in 25 applications received. To be clear, this doesn’t mean that fewer mediocre applications will receive money; it means that more outstanding applications with the potential to advance our understanding of cancer diagnosis and treatment will not be funded. If the new budget passes the way the Trump administration is proposing, then in FY26 this will be the way most grants are funded, with the planned proportion reaching 100% by FY27. Since NIH grants are typically hundreds of pages long and take months to prepare, with those odds of success a lot of people probably won’t even bother anymore. They’ll look for other places for funding (maybe outside the US) or they’ll look for other careers where they have more of a chance of making a real difference.
3. BAD/GOOD(?): After all the back and forth with thousands of NIH grants suddenly terminated, then a federal judge ruling many had to be restored, etc., on July 29, the Trump administration attempted once again to stop the flow of NIH research grant funding effective immediately, when the White House Office of Management and Budget sent a memo to NIH directors that “directed them to immediately halt the issuing of research grants, research and development contracts, and training awards during a ‘pause’ of unspecified duration.” Sure, no more cuts to NIH right now. Just a limitation hidden in a footnote that NIH funds can only be used for salaries, administrative expenses, and Clinical Center expenses. But 4 hours later, there had reportedly been such outrage from members of Congress and others that OMB announced the temporary pause was already over and the funds were being released. Pushback does matter! (And if you hear that it was already temporary and the release of funds after only 4 hours was always the plan, do NOT believe that. They were hoping it would take awhile for people to notice the footnote. Nothing important happens in only 4 hours in government.)
4. GREAT: Then on July 31, members of the Senate Appropriations Committee—both parties!—voted 26-3 for an early budget bill that would instead have a $400 million increase to NIH’s budget. It was what many are calling “a clear rebuke” of Trump’s push to minimize the function and impact of the agency. A $400 million increase instead of an $18 billion cut! It also preserved all 27 institutes and centers (no consolidation) and rejected the proposed plan to cap indirect costs at 15%. To be clear, the NIH budget is far from final. But this was an important early vote that sent an important signal. Good to appreciate the wins.
OK, what’s happening with CDC?
GOOD(???): After four long months with no CDC director—not even a person in an acting role, meaning all decisions normally handled by CDC scientists have been defaulting to attorney and public health conspiracy theorist RFK Jr.—Dr. Susan Monarez was officially sworn in as the Director of the CDC on July 31. This is good news. Probably? Certainly having a medical doctor in charge of CDC is better than someone with no medical or public health training. But she’s taking over an agency that has recently lost approximately 25% of its staff, is proposed to lose more than half of its funding in FY26, and is filled with demoralized federal workers who fear for their jobs and have been under severe restrictions re communications to the public and colleagues outside CDC. It’s hard to know whether this is really good or bad, until we see what Dr. Monarez does in this new role. Lots of tests are coming up shortly, so we should know soon. Will she sign off on the ACIP recommendations for RSV vaccines for children and monoclonal antibodies for parents? Without a CDC Director, RFK Jr. signed off on the ACIP recommendations that seasonal flu vaccines be made available to the public but only without thimerosal preservative…and in an unusual move the other votes received no action, leaving them in limbo. Let’s see what happens next, because Dr. Monarez’s action on those votes (or lack thereof) will tell us a lot about whether she plans to lead as a medical doctor or as someone under a politician’s thumb.
Let’s end on a great (for now) note: the FDA.
GREAT…for now: Dr. Vinay Prasad, who since May 20 has been the nation’s top vaccine official (technically the FDA’s Chief Scientific Officer and Director of the Center for Biologics Research and Evaluation), stepped down on July 30. Now, I’m not usually one to support anything Laura Loomer says, but she went after Prasad and then Trump fired him (“asked him to step down”). I am feeling more glee than I probably should. This is the guy who in 2021 compared the US’s COVID-19 measures to Nazi Germany (at a time when 700,000 Americans had already died), ironically claiming “COVID-19 gives a road map to end democracy” just a few years before taking a top post in an administration that’s frequently labeled as fascist. He was so quick to block medical and public health experts who disagreed with him on X (where he posted constantly) that he inspired a very active hastag #BlockedByVinay. He also pronounced in 2023 that “masking without evidence is an untreated mental illness” (call me crazy, but I’m going to trust the pediatricians who specialize in environmental health over the oncologist on this one, which had to do with wildfire smoke instead of COVID). So I was pretty dismayed when he was appointed to this key post in May—and I wasn’t the only one. In the 2.5 months since he was there, he overrode seasoned expert staff at FDA (again, Prasad is an oncologist, not a vaccinologist or immunologist) to restrict approval for Moderna’s latest COVID vaccine to people over age 65 or with a pre-existing health condition. He worked with FDA Director Makary to develop a whole new framework for COVID vaccine regulation (shifting away from universal access in the US), and pronounce it via a commentary in the New England Journal of Medicine. But in the end his real downfall was his decision to halt shipments of the only approved gene therapy for people with Duchenne’s muscular dystrophy, which affects mostly young males who universally die between their teens and early 40s. Yes, two patients died (originally thought to be three, though the FDA concluded the death of the third boy in Brazil was unrelated). There were legitimate safety concerns to be discussed. It’s good to take these things very seriously. But this is where Prasad’s embrace of the vocal contrarian role came back to bite him: he’s on record having issue with this drug therapy since before he started at FDA. He believed there was no evidence it helps. What he apparently underestimated is what it’s like for parents of kids with Duchenne, who are watching their quality of life slowly deteriorate until they eventually die. These parents were the main force behind the “Right to Try” bill, which was passed in 2018 and signed into law by Trump during his first term. It was controversial, because FDA already had a “compassionate use” program that allowed people with life-threatening diseases to apply for access to investigational drugs before they are fully FDA approved. Right to Try took it one step further—FDA doesn’t even need to pre-approve, and doesn’t have the same oversight for safety or other measures to protect patients. The idea is that if parents have a child dying of a life-threatening disease, they are the ones who get to decide whether the risks of the un-approved drug are worth the potential benefits to their dying child. You can imagine this was—and has been—controversial. But this controversial bill passed in large part because of the extraordinarily effective lobbying done by parents of kids with Duchenne, whose desperate pleas aligned with conservatives wanting less regulation of these types of medications.
Here’s how it all went down over a break-neck 11-day period: On July 18 Prasad directed Sarepta to pause shipments of the therapy. They originally refused to comply. Laura Loomer started slamming Prasad by the 20th. By Monday July 21 Sarepta agreed to pause shipments after all. On July 25th Rick Santorum jumped on the anti-Prasad bandwagon. By Monday July 28th there had been so much pushback that shipments were allowed to resume, at least for patients still able to walk. On the 30th, Prasad was out. Oh the drama! To be honest I don’t know where I stand on the Sarepta gene therapy, or Right to Try. I do know that Prasad signed on to work within a volatile administration, and steered directly into controversy. I’m not sad he’s one of the latest victims of the system he was supporting.
As someone said on reddit, “Impressive how he managed to piss everyone off in such a short time.” But let’s not break out the champagne just yet. Prasad was at least a doctor, and a scientist. Who’s going to take his place? A lot of people are afraid that person will only be worse, because these are the times we live in. They certainly could be right. Only time will tell.