Earlier this week, I had the opportunity to be in Washington, DC, and to meet with a number of lawmakers and their staffs to share my concerns about the destruction taking place at the National Institute of Health (“NIH”) right now as a result of the activities of this administration. I was there to advocate forcefully for our lawmakers to step in and put a stop to the destruction taking place at the NIH because we are putting lives at risk, my own included. What I shared with them is below, and I intend to keep showing up to ensure that this issue is not ignored. It is too important to let it go. The New Yorker just published an article on this topic as well outlining how Trump’s Agenda is Undermining American Science. I am unwilling to accept that.
The dismantling of our medical research infrastructure is actively taking place, and there is significant near and long term damage that is being done by the capricious cuts being made at the hands of the team from the Department of Government of Efficiency (“DOGE”). While this is purportedly being done in the interests of efficiency, it is not being done in a sufficiently thoughtful, deliberate or methodical way that will get any positive outcomes. And, to be clear, we need to be talking not about efficiency when it comes to the NIH but about value.
The NIH creates enormous value for us as a people: that value comes in economic terms, national security terms, and most critically in the terms that matter most to me in the moment, in the innovation that we create that lead to lifesaving breakthroughs. For people like me who are facing a certain near-term death without a medical breakthrough to come, with ALS I have no other options.
Medical research has ground to a halt as the result of the lack of process caused by the disruption interrupting the ability of researchers to start new research due in part to the review processes being put on hold, the laying off of career researchers and scientists, and the ongoing machinery of the NIH being disrupted by the wrecking ball that has been taken to the Institute.
While it is true that the specific implications of the cuts that were announced to the indirect funding have been put on hold by the courts, the rest of the impacts are equally chilling to medical progress, on which my life depends. More than 1,100 scientists and researchers have been fired from NIH already, These are some of the best and brightest scientific talent that we have in this country who are now likely entertaining offers from our adversary China to undertake their research in well-funded labs in Asia. It is chilling if we are willing to cede our global intellectual leadership to our adversaries, however, it might be in keeping with the theme that has emerged with this administration’s stance for ceding our economic and geopolitical leadership positioning, so we should perhaps not be surprised.