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Blunt Pushes Back on Biden Budget Cuts to NIH Institutes, Undiagnosed Diseases Network

Shares Story of Missouri Teen Mitchell Herndon’s Rare Disease Battle to Underscore Importance of UDN Program

May 17, 2022

WASHINGTON – Today, U.S. Senator Roy Blunt (Mo.), the top Republican on the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies (Labor/HHS), pushed back against the Biden administration’s FY23 budget proposal.

Blunt raised concerns over the administration’s plan to cut funding for several National Institutes of Health (NIH) programs and the Undiagnosed Diseases Network (UDN). Blunt shared the story of Mitchell Herndon who passed away at the age of 19 after losing his battle with a previously unknown disease diagnosed at Washington University in St. Louis, a UDN clinical site.

Blunt also discussed ways to apply lessons learned from the COVID-19 pandemic to advance mental health research.

The hearing included testimony from National Institutes of Health Acting Director Dr. Lawrence Tabak and National Institute of Mental Health Director Dr. Joshua Gordon.

Opening Statement:

“Well, thank you, Chair. I appreciate the work we've done together. As you said, this is my, in all likelihood, last NIH hearing. As I've started to look back on the time I've spent in the Senate, one of the things, I think, that will have the most long-term impact is what we have done together for NIH research. You've been a great partner in that effort.

“You know, we work closely with Chairman DeLauro and Congressman Cole in the House who chair that subcommittee. And they have both chaired the committee during the eight years we've been doing this work together. The entire committee, of course, was involved. But I'd particularly like to mention Senator Durbin and former Senator Alexander, who were right there at the beginning of trying to see what we could do to change a trajectory that really was not good. And, of course, Dr. Tabak, thank you for you and the directors being here with us today.

“And I think all of you would remember when I became chairman nearly eight years ago, NIH funding was stagnant, and had been for about a decade. But, over the past seven years working together, we've increased that funding by nearly 50%. It was a period of time that, looking back, NIH not only could count on sustained funding but also having a substantial increase every year. And I'm hopeful and confident that Senator Murray's continued partnership in that commitment will let us do that again this year. And I hope we're able to successfully work together and have a bill this year.

“I'm disappointed that this budget request reduces funding for 12 of the 27 institutes, including the National Cancer Institute and the National Institute of Allergy and Infectious Diseases. The latter, of course, has demonstrated over and over again how important it was during COVID. There are very few increases, frankly, that are proposed in this request. And one, like the Cures, like the increase in Cures, is coincidental, and that this FY23 year has that number already built in.

“The only significant increase, as the chair has pointed out, at NIH this year would be an increase of $4 billion for ARPA-H. Now I'm a supporter of ARPA-H. I'm a supporter of the secretary's decision to have it associated with NIH.

“But a $4 billion increase for ARPA-H and no increase for NIH would really verify the worst concerns that people have had about ARPA-H as a competitor to our ongoing research as opposed to finding a way where the government can, and should, be willing to take on more financial risk, become a real partner in targeted research outcomes that have a specific short-term goal in mind, and help us reach that goal. That doesn't mean we should jeopardize research challenges as big as cancer and Alzheimer's disease or as small as hearing aids.

“As we look to build, frankly, on the goal of doing more of what we were able to do in the pandemic. I was also surprised that the budget request failed to take more of the lessons learned from the pandemic into consideration. Instead of embracing more high-risk, high-reward science, and focusing on projects with instant impact, which proved so successful with programs like RADx, it appears that the budget got bogged down with political priorities that don't quite fit the agency's long-standing mission. This is clearly illustrated with a request for a new Center for Sexual Orientation and Gender Identity yet virtually no additional money for the Cancer Moonshot.

“NIH is clearly in a period of transition. If there is one lesson to be learned from the COVID-19 pandemic, it's that our nation's success depends on medical research infrastructure across the country, supported by NIH. Now is not the time to abandon that goal. Now is the time, in fact, to make it even stronger.

“And I hope the original, the eventual budget that we propose to our colleagues in the Senate, and to the whole Congress, will reflect that determination to make NIH stronger across the board rather than the way this budget proposal looks at NIH.

“And, Chair, thank you for your comments, and for the chance to speak, and for holding this hearing.”

Following is a transcript of the Q&A:

BLUNT: Dr. Tabak, during the time you were deputy director, of the seven hearings we had with Dr. Collins, who was the director at the time, I think, every single time, he talked about the importance of NIH bringing hope to millions. I want to talk a little bit about the proposed ending of funding for the Undiagnosed Diseases Network. We have one of those in St. Louis. Chair Murray has one in Seattle. I had somebody reach out to me a couple of weeks ago, Michele Herndon from Afton, Missouri. She was concerned because her son Mitchell, who had suffered from a series of health issues that doctors couldn't diagnose, had benefited from one of the centers. In fact, by late high school, he was in a wheelchair. His hearing was gone. His eyesight was gone. They were losing hope. But, after they sought treatment at the Undiagnosed Diseases Network in St. Louis, they found a neurological condition so rare that it didn't even have a name. In fact, Mitchell lost his battle. The condition he had now carries his name, the Mitchell Syndrome. But Michele and her family were comforted by the fact that they finally knew what this long struggle had been about. This year's budget cuts the Undiagnosed Diseases Network and closes all 12 of its clinical sites. She was concerned about that. I am, too. I think there's some discussion—well, they may graduate in some way to where they continue to exist. I think it'd be a problem to walk away from that. Not everybody can come to NIH in Bethesda, and if you don't have a site within some reasonable distance of where you are, you're unlikely to get this service. Do you want to talk about why that decision was made, to stop funding these 12 sites?

TABAK: We certainly agree that the diagnostic services provided by the Undiagnosed Diseases Network are extremely valuable to patients and to their families. The challenge that we face is there does come a point where diagnoses become part of standard care versus a research question. But finding that right balance is something that we continue to work through. All the cases that are enrolled presently will continue to undergo comprehensive evaluation. We will establish a data management and coordinating center to draw upon the experience of all of the centers that are participating in this program. But, really, we'd like to work with you going forward to come up perhaps with a better solution in the mid- and long-term.

BLUNT: Good. Well, let's continue to work on that. I mean this. You really can't have standard care if you are still discovering things that need to be looked at as an option. Mitchell Syndrome is Mitchell Syndrome only because he was the first, and maybe the only diagnosed person so far, that ever had that. And that's going to fall outside a standard-care definition, I think. So let's continue to work on that. Is Dr. Gordon available? Let me ask him. On the RADx, Dr. Gordon, in the mental health area. In the RADx example of, again, NIH itself partnering directly with others to try to find a rapid solution, do you think that that Shark Tank, RADx kind of option would be a possibility as you look for biomarkers and mental health?

GORDON: I think that's a great idea, Senator Blunt. I appreciate your support of that initiative and of NIH as well. We have funded a number of small businesses as well as a number of academics who have come up with really wonderful ideas for biomarkers that can help guide clinical decision making, something that we desperately need in psychiatry to help speed treatments, and make sure that people who need treatment get the right treatment from the get-go. And, one of the ideas we've been thinking about is using the RADx example where you had essentially a competition between a number of different companies. And RADx was for tests for COVID. But the idea is to apply something like that to the biomarker space for mental health, and we think now is the right time to do that. So we're talking with our colleagues at NIBIB, who ran the RADx competition, and trying to figure out how we can do that for biomarkers for mental health.

BLUNT: Well, good. I'd encourage that. I think every single home test for COVID comes out of the RADx experience. And, again, if you've got people that have ideas that can come to you, and try to see which of those you should partner with, I think that would be a great step in the right direction. Thank you, Chair.

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