You Funded It. Did You Benefit?

In my last post, I summarized the Bhattacharya–Huberman interview and listed key themes from their discussion. Now, I want to start unpacking them—beginning with a big one: How do taxpayers get their money’s worth from NIH-funded research?

During the interview, several concerns came up: What’s the return on public investment? Is NIH funding really making us healthier? Are chronic diseases getting too much attention at the expense of overall population health? Is there enough transparency and connection between scientists and the public? And, are taxpayers funding research that private companies then turn into expensive drugs, without seeing a direct benefit?

Let’s take these one at a time.

What Do Taxpayers Actually Get?

NIH funding has driven some of the most important scientific and medical advances of our time:

• Fundamental discoveries about how cells, proteins, and genes work (including unraveling all of our genes through the human genome project!)

• New tools to diagnose and manage disease—like blood tests, imaging, and AI algorithms

• Screening new medications using animal models to decide what moves forward

• New therapies approved by the FDA (99% of all therapies approved in the U.S. from 2010–2019 had NIH funding somewhere along the way).

• Clinical trials to test new treatments and follow-up studies in real-world settings

• Better care for both common conditions (like osteoarthritis) and rare diseases

• Leading-edge cancer centers funded by the NIH that serve as local beacons for cancer care and advances in Alzheimer’s research leading to the first set of potential medications and a better understanding of the disease process at the level of the brain

• Training the next generation of scientists in an apprenticeship model

• Economic benefits: In FY2023, NIH grants supported over 400,000 jobs and generated nearly $93 billion in economic activity

• NIH-supported discoveries also lead to patents, spinout companies, and public-market investments.

In short, NIH doesn’t just produce knowledge—it fuels an entire biomedical ecosystem.

But, this impact can feel invisible. Imagine you and some friends pooled money for snacks. You step away for a moment to use the bathroom and you come back to find the snacks are gone! Now you're standing there hungry, frustrated, and wondering why you chipped in at all! You’d rather have just bought your own snack.

That’s how many people feel about their tax dollars going to biomedical research they don’t see and/or can’t access.

Making Research Relevant

If you don’t see your disease or experience reflected in the research agenda, it’s easy to feel left out. And even when that research exists, it's hard to find. The NIH website isn’t exactly (or at all) user-friendly, and ongoing research can feel far removed from everyday concerns.

So how do we bridge this gap? The answer doesn’t lie solely within NIH. It lies in the individual scientists, academic institutions, nonprofit organizations, community partnerships, and public engagement strategies that make research feel local, relevant, and accessible. We need to speak directly to the people affected by the conditions we study—sharing how research is designed to improve their lives and the lives of their loved ones, in language that’s clear, honest, and engaging.

As scientists, we aren’t trained to do this. But, the tools and partners are out there. It’s time to get creative! We need to reimagine how we communicate, listen, and involve the public in research decisions. Because it’s not just about discovery—it’s about building trust and ensuring everyone sees the value in the “snack fund.”

What About Access to Research Results?

One issue raised was the lag between when a paper is published and when the public can access it. High-impact journals often place research behind paywalls for up to a year. That limits access outside of academia and potentially slows down innovation. As of July 1, 2025, NIH will require all funded research to be made immediately open access—a move that should help democratize access to knowledge. (This policy was created under the previous administration but is now being accelerated.)

At face value, this sounds like a great idea. In discussing this with one of my colleagues, however, she brought up that this entirely changes the business model for scientific journals. Good point…. Open access publishing is expensive—typically $2,500–$5,000 per article—and many researchers don’t budget for that in their grants. Changing how research is shared may require changing how sharing is funded too, though this hasn’t been discussed yet.

Who Profits From NIH-Funded Discoveries?

Another thorny issue: when NIH-funded discoveries become profitable drugs, who benefits?

It’s true that pharmaceutical companies often commercialize therapies rooted in NIH-supported science. The public may not see a direct return beyond access to the drug—which, ironically, is frequently unaffordable. The U.S. also tends to pay more than other countries, effectively subsidizing access elsewhere.

In 2024, a GAO report found that NIH was not being properly cited in many patent applications. NIH responded by requiring patent applicants to clearly state when inventions were supported by its funding. The report also noted underreporting in ClinicalTrials.gov, all suggesting that NIH’s role in drug development is even greater than commonly acknowledged. To be clear, NIH does already receive some returns: $704 million in royalties in FY2022 and $693 million in FY2023. But given the outsized role of NIH in early-stage research, there may be room to rethink how we share in downstream profits.

That said, it takes a village (and millions of dollars… like $172-880 million) to get a new therapy to market, especially when you factor in failures. That price tag is out of range for the NIH to take on alone. Industry partnerships are essential. Still, transparency and fairness in attribution and access should be part of the equation.

Final Thoughts

This isn’t just a conversation about science—it’s about trust, equity, and connection. If we want the public to support and champion biomedical research, we need to do a better job showing them where their dollars go, how discoveries are made, and how those discoveries come back to benefit them.

More coming soon! We have 11 more points to consider!