During Wednesday’s Senate Appropriations Committee hearing, Sen. Chris Coons (D-DE) got emotional from hearing the story of Emily Stenson and her daughter who survived cancer.
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00:00Senator Coons. Thank you, Chair Collins and Vice-Chair Murray. Thank you for
00:05convening this hearing and I want to thank each of the researchers who has
00:09dedicated your lives to science, to medicine, to progress. Thank you for your
00:13testimony today.
00:19Emily, thank you. I am enraged and struggling with this hearing. Listening
00:29to you talk about the value of hope to you and your daughter with cancer and the
00:36very measured and reasonable way in which we've all discussed what's happened
00:40makes me crazy. Because Doge, in my view, is a horde of locusts who've been
00:48unleashed on the federal government and they have torn up things that we have
00:54built over decades. Let me just briefly review. At NIH, 1,200 probationary
01:03researchers were laid off and another 1,300 fired. That's 2,500 dedicated
01:10researchers. At FDA, 3,500 staff. At NIH, Doge canceled 800 grants valued at over a
01:20billion and we were told these grants focused on DEI, when in fact they
01:25focused on diabetes, Alzheimer's, mRNA, and cancer. My father died of cancer. My
01:36father-in-law died of cancer. My stepfather died of cancer. Your daughter Charlie is
01:41with us today because of the incredible dedicated research and the groundbreaking
01:46work of people we've talked so calmly about today. Dr. Slackman, I have a personal
01:53friend, a combat veteran, a Marine Corps colonel, who came to me when he was
01:58diagnosed with stage 4 metastatic melanoma, as you just described, and whose
02:03life was saved by the research you described. I have a personal friend of
02:10decades, Nikki Sotiropoulos, who came to me when he was diagnosed with brain cancer.
02:16His son, close friends with my sons. His wife, close with my wife. And he went to
02:21NIH month after month, year after year. Yes, clinical trials doctor sometimes
02:27doesn't benefit the individual, but I gotta tell you, it sure as hell benefited Nick
02:32and his family. It gave him hope and it kept him alive. And I don't understand how a
02:38single member of this Congress can look you in the eyes as a mother and say we
02:44should cut these programs. Sure, we can talk about overhead rates. Sure, we can
02:51talk about measured and thoughtful and reasonable ways to trim a little here or
02:55cut a little there, but that's not what's happening. What's happening is the
02:59whole-scale abandonment of billions of dollars of research. I was just at the
03:05University of Delaware last week at the National Institute for Innovation in
03:10Manufacturing Biopharmaceuticals. And you know what I was told? That at the
03:16University of Delaware, the little University of Delaware, Newark, Delaware,
03:1955 million dollars in health research, 55 million, has been delayed, paused, or
03:25withheld research on HIV, Alzheimer's, and characterization of cancer cells. And if
03:31that's happening in my little state all across our country, we are devastating the
03:36next generation of researchers. We are harming our nation and giving China the
03:41opening of a lifetime to recruit the best and brightest from around the world. And
03:46Emily, we are taking away from families like yours all over our nation hope. Emily, can
03:55you tell me how important hope is for you and Charlie? How important is it that we
04:00keep investing in research? Thank you for the question. Hope gets you through the
04:10hardest days. And I know I explained in our story some of the hard days that we
04:16had and hope is what kept my husband and I going and trying to save our daughter.
04:22There's no value you can put on hope and we need to be providing it to all of the
04:28families like ours. So yesterday I caught up with a Delawarean who's been living
04:33with ALS for years and last weekend a close friend of mine confided his recent
04:39diagnosis with ALS. Senator Murkowski and I worked to get signed into law a bill to
04:45invest in ALS research. Dr. Eshim, if I could, how will the cuts to FDA impact your
04:53agency's ability to characterize and bring new treatments to provide hope to
05:00those living with this horrific disease? Thank you for that question, Senator. And
05:05I believe you're probably aware that the Alliance did send letters to this
05:08committee expressing our concerns about the volume of risks and departures and
05:13its potential impact on the ability of the FDA to be effective and be able to
05:17continue to evaluate safety and advocacy of next generation medical interventions. I
05:23will say I did have the privilege of meeting with the Commissioner on Monday
05:26and was happy to hear that there are that he does not have any major plans for a
05:30major reorganization and while they're looking at efficiencies potential
05:35consolidations and things like travel and HIT and potential efficiencies that can
05:39be brought about by regulatory innovation, I was happy to hear that they are
05:43looking very hard in examining what functions need to be brought back to the
05:47agency to ensure that they are able to manage, you know, optimally manage their
05:51workload and and continue to review and approve next generation medicines. I think
05:55continued transparency and communications about this and engagements can be
05:59very important moving forward. We are certainly, the Alliance will be
06:03certainly examining the proposed budget updates about staffing including
06:07information about what positions are funded by user fees and how we can work
06:11together to make sure that in total the FDA has the resources it it has to
06:16have to not just approve what's before them now but to continue to drive
06:21investment in the United States into next generation medicines. If we don't have a
06:24functioning FDA that has a severe impact on the ability to raise funds for
06:30next generation medicines. The FDA, the NIH, the National Cancer Institute's all in
06:37combination give hope to those facing the beast of cancer, the challenges of a new
06:42diagnosis and the need for a path forward that's positive. Thank you for what you do.
06:47Thank you Madam Chair for this hearing.