It's time to talk NIH. Our lives depend on it.
What in the Health?! March 27, 2025
OK, it’s time to talk NIH—which is an acronym probably everyone knows by week 10 of the Trump Administration 2.0, but just in case, is the National Institutes of Health. It’s Institutes (plural), because the NIH is made up of 27 different institutes and centers, such as the National Institute of Allergy and Infectious Diseases (NIAID—this is the Institute Dr. Anthony Fauci directed at the time he entered the COVID-19 spotlight), the National Cancer Institute (NCI) or the National Institute on Drug Abuse (NIDA).
The NIH funds a massive amount of cutting edge research in the United States and abroad. (Or at least, it did until a few weeks ago.) NIH research has generated huge advances in health. If it wasn’t for the NIH we would not have artificial heart valves, effective therapies for treating melanoma, or a blood test for Alzheimer’s Disease, just to name a few.
The vast majority of the NIH’s budget is distributed through grants to hundreds of thousands of people conducting research in a huge variety of settings. In most cases it is extremely laborious to apply for these grants; they are also extremely competitive. In 2023, more than 71,000 research teams submitted grants competing for $8.75 billion in research grant funding and only 23.6% received funding from that pool. It usually takes researchers 2-3 grant submissions of a successful project before it is funded, and they are expected to refine each proposal from feedback they receive and resubmit months later in a future funding cycle.
Many of the NIH institutes receive their funding directly from Congress, and these funds are disbursed through a system of scientific peer review, which is required by law. It takes approximately 9 months from when a grant proposal is submitted to when a successful proposal generates funding and a research project can begin. This takes so long because when grant proposals are submitted they go to a scientific review group (also known as a “study section”) of non-federal scientists who have expertise in relevant disciplines. Those peer researchers assess the quality and expected overall impact of the proposed research, and generate an “impact score.” Only those proposals with exceptionally good impact scores end up being funded; the rest get sent back to the drawing board. The system is designed to ensure that the research that is funded will be high quality, and likely to result in considerable positive impact on the health and wellness of the American people.
If this is supposed to be for Americans, why is research funded abroad, you might ask? Well, we live in a connected world, especially these days. If Ebola breaks out in Uganda, there’s a risk it will spread to the U.S. if it’s not controlled. (This happened in 2014.) If there’s uncontrolled TB in India, it affects the likelihood of people in the US being exposed to TB. If we find out that a new medication administered twice a year to people at risk for HIV in Sub-Saharan Africa prevents 100% of new HIV infections compared to those who received a placebo, then we hypothesize that it would work the same in the US and start trials here to find out.
So why are we talking about NIH right now?
Because in the last two months this entire system has been decimated. First there was confusion over the federal funding and communications freeze. Study sections were cancelled—meaning no grants were reviewed and no funds were disbursed. Then at least some study sections started meeting again, but there are numerous reports of grants that were submitted being mysteriously pulled from the pile before the peer scientists in the study section have a chance to review and submit an impact score. Then in the last month, hundreds of researchers with existing research projects already in process started receiving termination notices, effective immediately. The termination notices include language letting researchers know their work is “incompatible with agency priorities, and no modification of the project could align the project with agency priorities.”
HHS has published a list of grants they have terminated. It is extremely long. Even better, here is a searchable list you can filter, or download in a .csv file.
Here are some highlights for you, so you don’t have to peruse the list:
As of the time of this post, there are 392 grants that are publicly known to have been terminated. There are definitely more, but researchers aren’t yet ready to share publicly (probably because their universities are reviewing with legal).
168 of them are from Columbia University. Let that sink in. (Presumably these will be restored since the University agreed to the Trump Administration’s demands under severe duress, but to my knowledge no grants have been refunded yet…and even if they are, in many cases it may be too late to restart.)
The very vast majority of these grants were terminated because they explicitly acknowledged the existence of transgender people, were aimed at reducing health disparities experienced by people from specific non-white racial groups, were aimed at improving the health of LGBTQ+ people, or were focused on vaccine research.
If a grant is terminated before it is completed (which used to be exceedingly rare), then regardless of how much money was spent on it already or how many people had volunteered as study participants—sometimes taking on substantial risk to their health or social welfare to do so—we will not know what those data generated. We will not know the answers to the research questions that scientific peer reviewers deemed to be high impact at the time the grant was funded, since findings are usually generated at the end of the research period, once data collection is complete.
As a result of these terminations, here are some research for which we will no longer have answers:
Uptake, safety and effectiveness of COVID-19 vaccines during pregnancy
Enhancing K-12 school safety during a respiratory viral pandemic
Public drinking water contaminants and effect on infant health
Strategies for preventing vaping initiation among LGBTQ+ youth ages 13-18
Relationship between prenatal exposure to phthalates and gestational weight gain and fetal growth
These are just a few small examples. Good thing we’re working to “Make America Healthy Again” and have decided to “re-direct our national focus…toward understanding and drastically lowering chronic disease rates and ending childhood chronic disease.”
If this is the kind of thing that motivates you: Do you think China or Russia are stopping their efforts to do medical research? I can tell you they are not. These grant terminations are not based on science, because scientists already agreed they were important research studies with high quality – in the top 20% or so of all the tens of thousands of research grants submitted to NIH that year. Make no mistake, no matter what they say: these grant terminations are based on ideology, and they are putting the US back decades in scientific research compared to other countries. We will no longer be proud leaders of medical and public health advancements worldwide. Those days are not coming back anytime soon.
If you’re more persuaded by economic arguments: for every $1 invested, NIH returns $2.56 to the US economy. Last year NIH supported more than 407,000 jobs in the US. If you want to better understand how NIH funding (or funding being threatened or cut) is affecting your state, you can go to https://www.unitedformedicalresearch.org/nih-in-your-state/ to learn more.
Personally, I hope you’re most motivated by the efforts to improve health or save lives of your fellow humans. Maybe it’s you, or a loved one, who will benefit from immunotherapy for your cancer—or alternatively will die of cancer because we weren’t able to continue research that would lead to new, better therapies. Without this research, more Black Americans will continue to die of stroke than White Americans, and more transgender Americans will die of HIV or suicide. These are things NIH researchers are trying to prevent and improve.
If only the US government will let them.