Members-Only Article
This is a follow up to Friday’s piece on how to save American biomedical research. A lot of what follows assumes you’ve read that earlier piece. I realized based on responses I received that there is one point I didn’t make explicit enough. As I wrote, there are “disease communities” around every major disease that affects Americans — cancers, diseases of age and dementia, heart disease, degenerative disorders. These communities exist in relationship with various advocacy organizations. But they are not the same and there’s a reason I focused specifically on these communities rather than the organizations.
Let me preface this by saying that advocacy organizations have an important role to play and they are doing God’s work generally. But in key ways, they are part of the bureaucratic channels of power which the White House has already disrupted or shattered. Many of these organizations are very leery of any actions that can be perceived or portrayed as partisan. Like universities, many are fairly top down in structure and dependent on major donors to fund their grant-making and advocacy work. Some are afraid their tax-exempt status will be challenged if they speak out clearly about what the administration is doing.
Each of these fears or reasons for being cautious or keeping quiet are understandable if not laudable. But they’re critical to understand. They are analogous in many ways to the research institutions themselves. The organizations are functionally part of those channels of review, advocacy and contestation that the White House has already disrupted or shattered. They are in a hunkered down posture of self-preservation more than fighting.
There’s a second reason the organizations are not the key line of defense. We are living in an anti-institutional moment and era of low trust. If the American Cancer Society puts out a statement saying these cuts are wrong and need to be reversed, that just doesn’t matter that much. Our politics just has a lot of acquired immunity to a big organization making a statement. It’s fake news; it’s a woke organization — pick your catch phrase. Our politics is flush with antibodies against the pronouncements of big institutions and authorities.
Don’t get me wrong. Those statements are helpful and needed. But they’re far from sufficient. It’s the communities that are important, networks of individual people and families with their own social networks. They’re the ones who can show up at town halls; they can contact representatives and senators; they can spread the word within their social networks. Critically, they don’t have 501c3 statuses to worry about protecting or big donors to keep happy. Big organizations need to be wary of cutting what is perceived to be a partisan political profile. Individual members of these disease communities are just upset and want to get the funding restored and with the exception of those with super strong partisan identities they just aren’t that concerned about how any of it is perceived in partisan terms.
We shouldn’t make hard or binary divisions between “communities” and “organizations.” They are interdependent ecosystems. Sometimes the organization helped create the community; other times the reverse. Organizations also come in different shapes and sizes, some very top down and others very grass-roots and member-driven. The salient point however is that the organizations as such are fundamentally part of the bureaucratic channels of review, advocacy and influence which the White House has disrupted or shattered. The hope for the biomedical community is through mass politics. And so it’s the communities, the networks of individual people, that is where the focus needs to be.
