Fighting the Trump/DOGE cuts to biomedical research

This is a long but cogent piece in Talking Points Memo. Unlike the author, I long ago appreciated the threats posed by the massive cuts to NIH funding. But Josh does the extra work of thinking about how this anti-science juggernaut could be halted. Read the whole thing, but here are the nut grafs:

“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 pushing these cuts or at least point trying to make them permanent through the 2026 budget process. But how can this be done at scale, 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 build up around it. These are a mix of survivors, people suffering from the disease, family members, loved ones and caregivers. To a lesser degree they involve 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 they 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 general was only just beginning to make itself known in these disease communities. Put these two things, 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. They lack 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.”

 

https://talkingpointsmemo.com/edblog/a-path-forward-to-save-american-bio-medical-research/sharetoken/0a234fa8-d968-4e8c-abe8-8043c2a1a125