What is happening here?

A 411 on the state of the NIH

This week I’m pivoting from my normal blog style to provide an update on US government funded medical research. With so many eye-catching headlines, there hasn’t been a lot of attention paid to this corner of the government recently – but you should know what’s happening here.

As background info: a majority of medical research conducted in the United States is funded by the National Institutes of Health (NIH) which has a budget of over $45 billion and generates an estimated $96 billion in economic activity. Only about 11% of the funded research is actually conducted by the NIH in government owned labs. The majority is funded through HIGHLY competitive grants that go through a rigorous review process before being awarded to universities, medical schools, or other research institutions.

In January, shortly after the inauguration, the administration cancelled all future NIH grant reviews, staff travel and training, and prohibited employees from attending meetings - even virtually - with organizations outside the NIH. The hope was the restrictions would be lifted when a new HHS secretary was confirmed, but that day came and went.

So why can’t other countries, non-profits and commercial research pick up the slack?

The NIH is the largest funder of medical research in the world – no other country even comes close. And certainly no non-profits. For example, in 2022 the US government, across agencies funded $226 million in epilepsy research. CURE Epilepsy, the largest non-governmental funder of epilepsy research in the world funded around $5 million in research that same year. Commercial research (pharma, bio medical) depends on non-profits and the government to fund the basic science and riskier ideas that they then pick up and can potentially turn into profitable treatments.

This (hopefully temporary) halt in funding doesn’t just affect new research, it also effects research that has already been approved. For long term projects funding is released over time. With meetings frozen those funds have been in jeopardy. Organization like the Undiagnosed Diseases Network, which helps rare and ultra rare patients find a diagnosis when traditional medicine has come up empty handed is at risk of having to pause operations at the end of March if funding is not released. Patients accepted into the program will remain in limbo - many are children with life-threatening illnesses.

Courts have ordered the administration to resume funding, but those orders have largely been ignored. Only within the last few days has there been some optimistic movement with awards being issued again, however there is a back-up and no telling whether there will be any other future blocks, cuts or delays. This is an area that needs to be closely watched.

Also currently blocked by a court order, is a 15% cap on “indirect costs” for all NIH grants. Prior to 2025 indirect cost spend was around 27% of the grant. Indirect costs include building maintenance, equipment, support staff, and overhead expenses. Basically, the day-to-day costs of running a lab. Cutting this by nearly half would have a detrimental effect on American research which we are already seeing in university hiring freezes. There will be less jobs for graduate students, labs will close, and staff and researchers would be laid off which could be incredibly detrimental to some state economies, like Alabama, where the University of Alabama is one of the largest employers in the state. Whereas scientists once flocked to American universities they will now head overseas, taking their ideas, research, and future patents with them.

Just this week it was announced that the NIH is planning to terminate hundreds of active research grants – this means grants whose funding has already been approved and has research underway. According to exclusive reporting from the scientific journal Nature, “NIH staff members have been instructed to identify and potentially cancel grants for projects studying transgender populations, gender identity, diversity, equity and inclusion...”

This reporting confirms earlier reports of a list of words that should be excluded from any future grant proposals as they have been tagged as leveling additional scrutiny. This list includes words like: woman, disability, trauma, underserved, and equity – just to name a few.

Thankfully, there are other government agencies that fund medical research. Unfortunately, the continuing resolution that was passed by the House this week and sent to the Senate in hopes of preventing a government shut down includes a 57% cut to one of those programs: the Department of Defense’s (DOD’s) Congressionally Directed Medical Research Programs (CDMRP). This program had a funding budget of 1.57 billion for year 2024 and slashes that to $650 million for 2025. In addition to funding a variety of cancer, women’s health, and Parkinson’s research, it is also home to the Epilepsy Research Program (ERP) which has funded nearly $100 million in epilepsy research since its inception in 2015.

Ok, so what can we do about it? Start following research non-profits on social media AND sign up for their emails – especially ones that are focused on the diseases that impact you and those you care about. These organizations are sending out call-to-actions with scripts to call your representatives about specific funding that pertains to them. I know these calls can feel like fighting a war tank with a fly swatter, but they are counted and can have influence especially if your representatives are Republican.

I know this breakdown has been a whole lot of info and it is very easy to feel like these cuts and freezes don’t have an immediate impact on our lives. However, every single one of us has benefited from government funded research. And for entirely too many Americans cuts to research is the difference between life and death.

Photo ID: A two year old little girl laying in a hospital bed. Her head is wrapped in guaze, with an oxygen cannula in her nose and taped to her cheeks. Around her chest is a monitor which is reflecting a red light on her hospital gown. She is asleep with her thumb in her mouth.