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Over the past four months, I’ve spoken to dozens of biomedical researchers either at NIH, other government grant-making agencies or at the various American research institutions which receive U.S. government grants. Over that time, I’ve developed at least a very rudimentary understanding of the nitty-gritty mechanics of the grant-making relationship between agencies and research institutions. What I’ve learned is a fascinating and critically important dynamic operating just beneath the surface of theWhite House’s whole war on biomedical research specifically and universities generally. The world of biomedical research actually has immense latent political power, albeit largely untapped. Researchers have a much stronger hand politically and the White House’s position, in terms of public opinion, is comparatively weak.
The problem is that the world of biomedical research has close to no experience operating in a political context and especially in the context of mass politics. Much of the world of biomedical research operates through channels of review and funding connecting a few government grant-making institutions to the nationwide archipelago of research institutions and universities. Operating within those channels is so basic to the mores and experience of the research and university world that researchers have in many cases kept trying to operate within them (rebooting them, checking them for unknown clogs) long after the White House has broken them and moved on. The White House has relied on researchers’ unfamiliarity with political fights, using their sole reliance on bureaucratic channels of funding and review — which the universities and the federal government set up together going on a century ago — against them. The only other pathways through which researchers tend to assert themselves are professional organizations, very non-mass politics entities which, in ordinary times, would speak to the relevant members of Congress.
They say when you have a hammer everything looks like a nail. The world of research is to a great degree still stuck in a channel of path dependence. Like a great flanking maneuver that Ulysses S. Grant might have appreciated, what is required is to pull up stakes from those channels the White House has already shattered and move to the field of mass public opinion. Make the decision to meet them on ground that is far more favorable and where a decisive victory is possible. The future of biomedical research in the United States comes down to a race to see whether the biomedical research community can mobilize politically, access that vast but latent political power, before the White House can do enough sustained damage to make the whole question moot.
Let’s start with the premise, the guiding assumptions.
Basic and applied research generates huge dividends for a society. But its immediate and salient relevance to the average voter varies greatly. Theoretical physics is very worth funding and has many real world applications. But its relevance to — and just as importantly, its political traction with — a middle income couple in your average community where he’s a bus driver and she’s a nurse may not be crystal clear. Yet everyone knows a family member or loved one or friend stricken with cancer, or conditions tied to aging and dementia, heart disease, or any number of other conditions against which medical science is making steady progress. The point is so obvious it barely merits arguing: People fear death and disease. They look to science for hope of cures and some promise of long and robust lives. For two or three generations, that hope has been tied to researchers, somewhere, perhaps operating with something akin to magic but consistently producing new and wonderful things.
The political traction tied to research into cures is immense. You don’t have to take my word for it. Polls which have looked at this question show opposition to these cuts running at well over 80%. Indeed, one of the few challenges of the politics surrounding this is that people not only oppose what’s happening — when they find out about it — but find it so inexplicable that they have a hard time believing it’s even true. “Why are they against finding cures or treatments for cancer?” I have had this asked of me many times in recent weeks.
People find it so bizarre, let alone wrong, that they need genuine convincing. And I’ve heard about this mix of disbelief and denial not only in the general public, but very proximate to — and even inside — the world of biomedical research. I’ve had numerous conversations with people at NIH who will attend a conference and be stunned or shocked that colleagues just a stage or two removed from NIH have no idea what’s actually happening within the institution from which most of their grants and research funding originates. It’s a mix of denial, that word hasn’t gotten out, and other factors.
And it’s not only cures. Medical care in many parts of the country is heavily dependent on anchor academic medical centers or university hospitals which either wouldn’t exist or would be greatly diminished without the money that goes into biomedical research. So it’s not just a question of whether there will be a treatment for disease X by the time I stand a good chance of getting it, but also a question of will there be a top-flight hospital in my area which can care for me? If anything, exurban and rural America are more dependent on those anchors than urban America.
The challenge is that the world of biomedical research is insular. It operates with a system of internal governance and mores that are broadly understandable to people who’ve been exposed to university life, especially in the sciences. But that’s a very, very rarified discourse — peer review, study sections, fundamental vs. applied research, pipelines of new researchers, etc. Let’s start with just the foundational point that almost no one has any fucking idea what any of those terms and concepts mean. And for most things, that’s fine. Society should be well-run and knowledgeable enough to keep its scientists and researchers funded so that they don’t need to focus on the song and dance of making the case for what they do in the public square. Unfortunately, that’s not the world we’re living in right now.
Researchers have an additional and under-ordinary-circumstances very understandable desire not to overpromise or give false hope. This is rooted both in ethical imperatives and the uncertainty-driven empiricism that is the hallmark of any good scientist. But at the moment, it is a big problem because it is providing an unmerited advantage to those who are using lies to shut down medical research in the U.S. I’ve had some people tell me, well, under the circumstances, I guess we’ll need to gild the lily. But really, that’s not necessary. It is certainly true that there are many promising lines of research that end up being dead-ends. There are others that hold the promise of silver-bullet cures but end up providing much more incremental improvements (think of the role of angiogenesis inhibitors over the last quarter century). Many of us know of that very promising study on using mRNA vaccines against pancreatic cancer. But we’re not talking about one line of research. We’re talking about biomedical research as a whole. On that, there’s no question of false hope or overpromising. We’ve been at this for 80 years and over that period basic and applied research has consistently generated improved treatments and cures year after year. It’s no hyperbole to say that wrecking biomedical research now will leave many of us without cures or treatments in the future. It’s close to a certainty. No gilding of any lily is required. Anyone who cares about this shouldn’t be afraid of that fact.
When the average person finds out what’s happening with cancer and Alzheimer’s research, not to mention all the other focuses of research, they not only oppose it, they get mad. That, quite simply, is political power for good. The issue is that news of what’s happening is not getting out nearly as much as it could or it should. Partly that’s because so much else is going on; partly that’s because people find it so shocking they sometimes dismiss it; and to a real degree, it’s that the people who know the most — the biomedical researchers themselves — speak in a fairly arcane and esoteric language.
So how can this trajectory be changed? Basically we need people with big megaphones to start leveling with the public about what’s happening. The more widely known this becomes, the more salient it becomes, the worse it will get for those people who are pushing these cuts, or at least trying to make them permanent through the 2026 budget process. But how can this be done at scale, to change the equation in the very short term? There’s one approach which mostly hasn’t been tried and which I believe holds great promise.
Every major disease affecting Americans has what we might call a disease community built up around it. These are a mix of survivors, people suffering from the disease, family members, loved ones and caregivers. To a lesser degree, it involves clinicians and those in the caring fields. Sometimes those communities are strongly tied to the quasi-official fund-raising and public awareness organization to the specific disease. But sometimes they’re not. The key is that these aren’t top-down organizations. They’re genuine mass membership organizations and even movements. Often there are a handful of different organizations. But the point is these communities are out there, regardless of precisely how they’re constituted. They’re made up of people who care deeply about the issue and who can make their voices heard. I first started thinking about this when I was speaking to a former NIH researcher and he mentioned to me how he was about to do a Zoom meeting open to members of a breast cancer–focused organization in a mid-sized to large state. Just in that one state and focused on that one (albeit common) disease, the group had about 80,000 members.
Something clicked in my head. And when I did some more poking around, I learned that what’s happening at NIH and in biomedical research generally was only just beginning to make itself known in these disease communities. Put these two things, these two groups, together — the researchers who know what’s happening and the disease communities who need to know — and it’s like a spark in a room filled with gas fumes.
This is really the entire story. I’ve written in other posts about how we’ve learned over recent months that the modern American university is simply not equipped for this kind of assault. It lacks the tools and experience. I’ve described the challenges the researchers have communicating with the broader public. But these people — the people in the disease communities — are all people who speak human. There are lots and lots of them. They will show up at town halls. In their nature, they transcend ordinary political divisions. This is what has to happen. When the people in the world of biomedical research — let’s cut the technical language: disease cure research — make sustained contact with the people in each of these dozen or so disease communities and help them understand what’s happening, that’s the point when I think everything will change.
But will it happen?
And how soon?