Advocacy Schmadvocacy

RFK Jr. just pulled a fast one. He killed public comment requirements for key health regulations, meaning the government can now make significant healthcare decisions without giving a damn what patients, advocates, or literally anyone outside their echo chamber thinks.

Apparently, listening to the people who actually live with the consequences of these policies was just too inconvenient.

HHS controls everything from NIH grants to Medicaid. Cutting out public input means decisions that impact millions will be made without those millions having a say. It’s a gift to politicians and lobbyists who don’t want to deal with patient advocates slowing them down with “lived experience” and “evidence.”

We’ve been here before.

They tried this in 1980, and it backfired.

Now, in 2025, some patient groups are already fighting back—like the NIH grant recipients suing HHS for slashing research funding with zero public input. Good. More of that, please.

For years, patients have been told their voices matter.

We’ve been paraded around at conferences, given microphones at panels, and asked to “share our stories” like it actually made a difference. Now? The government just admitted they’d rather not hear from us at all.

So, what now? Do we let this slide?

Or do we remind them that silencing patients never ends well?

https://www.statnews.com/2025/03/06/rfk-jr-public-comment-patient-groups-richardson-waiver/