The Scoop from Capitol Hill – March 2025
Federal Updates
Continuing Resolution’s Impact on Hydrocephalus Research:
Congress recently passed a Continuing Resolution (CR) that will keep government agencies funded until September 30th. While a government shutdown was prevented, the CR included significant cuts to the Congressionally Directed Medical Research Program (CDMRP)—a key source of funding for hydrocephalus research. The CDMRP, funded at $1.561 billion in FY2024, supports high-impact, peer-reviewed research across a range of conditions relevant to military and public health. In recent years, hydrocephalus research has seen important gains through this program, including the first clinical trial in babies for a drug combination that could support the brain’s natural repair process after a brain bleed. In the 2022 grant cycle, hydrocephalus was awarded a historical high of $15 million in research funding. Hydrocephalus research was awarded $11.78 million in 2023 and $1.57 million in 2024.
Before the legislation passed the Senate, HA submitted a letter from CEO Diana Gray, co-signed by CDMRP-funded hydrocephalus researchers and companies, urging lawmakers to vote against the cuts. The letter can be found HERE.
Despite these efforts, the program’s FY2025 funding was slashed by 57% ($859 million). The Peer Reviewed Medical Research Program (PRMRP) – the program in which hydrocephalus is eligible – was cut to $150 million (almost 50% less than FY24 levels). Over 20 other research areas, including lung cancer, were eliminated from the 2025 funding cycle altogether. These cuts jeopardize promising research on shunt technology and treatment strategies—many of which directly improve the lives of individuals living with hydrocephalus, including service members and veterans.
The Hydrocephalus Association is assessing bipartisan opportunities to work with hydrocephalus congressional champions to restore these critical funds. Stay tuned for opportunities to take action and advocate with your members of Congress.
CONNECT for Health Act Reintroduction:
The Hydrocephalus Association has endorsed the CONNECT for Telehealth Act, which is set to be reintroduced on March 29, 2025. The bipartisan legislation would expand coverage of telehealth services through Medicare, make permanent COVID-19 telehealth flexibilities, improve health outcomes, and make it easier for patients to connect safely with their doctors.
Permanently expanding telehealth opportunities would offer significant benefits to the hydrocephalus community. By removing geographic restrictions on health services, more patients would be able to receive care from their home and/or qualified sites from medical professionals experienced in hydrocephalus diagnosis, treatment, and care.
Partnering in the Health Policy Space
Protecting Federal Neurology and Brain Research:
HA has endorsed two congressional letters by the American Brain Coalition urging Congress to provide robust funding for two key federal brain research programs: the U.S. Food and Drug Administration (FDA)’s Neurology Drug Program and the National Institutes of Health (NIH)’s Brain Initiative. The expiration of the 21st Century Cures Innovation Fund, which supports the initiative, led to a nearly 40% reduction in its FY2024 budget.
The NIH Brain Initiative provides unique funding that advances research for neurological, chronic, and degenerative conditions affecting the brain. The FDA Neurology Drug program supports expertise to develop policies and guidance that keep pace with emerging brain science. It also bolsters the development speed for safe and effective treatments for brain diseases and conditions.
The Hydrocephalus Association supports the continuation of funding for federal research avenues that have the opportunity to advance understanding of the brain and conditions affecting it, like hydrocephalus.
Conrad 30 Legislation Reintroduced:
HA joined other provider and patient organizations on a letter of support for the Conrad State 30 and Physician Access Reauthorization Act (H.R. 1585/ S. 709). The legislation addresses the crisis of physician shortages in rural and underserved communities across the United States.
H.R. 1585 / S. 709 would reauthorize the Conrad 30 Waiver Program, which allows highly skilled foreign physicians who complete their medical residency in the United States to waive certain immigration requirements in exchange for practicing in areas with high medical need. To qualify for a waiver, physicians must commit to working for three years in a federally designated rural or underserved area. This program enables them to bypass the requirement to return to their home country for two years before applying for a U.S. visa or green card.
Protecting Federal Medicaid funding:
The Hydrocephalus Association has continued to advocate against cuts to federal Medicaid funding. HA has signed onto a letter circulated by Families USA that urges House and Senate leadership to prevent federal funding cuts to Medicaid.
A new budget proposal from House Republicans would have significant impacts on federal Medicaid funding, the program that provides health coverage to millions of Americans—including about one-third of people living with hydrocephalus. If passed, the plan could reduce how much doctors and hospitals are paid to treat Medicaid patients, make it harder to expand coverage, or shift more healthcare costs to patients—especially those with lifelong or complex conditions like hydrocephalus – through cost-sharing adjustments.
The House budget package is now waiting for a vote in the Senate. Once finalized, the House Energy and Commerce Committee will use the framework to implement the $880 billion in spending reduction.
Recent Advocacy Articles:
Hydrocephalus Association CDMRP Letter to the U.S. Senate
Medicaid Coverage is a Lifeline for Many Hydrocephalus Patients
Hydrocephalus Community Advocates for Change on Capitol Hill
OPPORTUNITIES TO ENGAGE:
- Monday, April 7 HydroAssist Mobile App Webinar
Be your own medical advocate with HydroAssist, our mobile app available for free in the App Store and Google Play. Join the app developers for a walk through of the key features of the app and the rationale behind its development. Webinar starts at 7 pm Eastern. Register here.
- Wednesday, May 7 Hydrocephalus Advocacy Update
Want to deep dive into these issues? Don’t forget to join us for our next Advocacy Update on March 5th at 7:00 pm Eastern. If you haven’t signed up yet, click here to register.
- July 23-25 2026 HA CONNECT National Conference on Hydrocephalus
Did you catch our announcement about our National Conference? We will be in Indianapolis, home of the CDMRP-funded Hydrocephalus Research Center at Indiana University. Stay up to date on conference announcements and registration here.
- Make Your Voice Heard!
Be sure to visit our Advocacy Center and take action on our legislative alerts. We need to ensure that Congress is hearing us loudly!
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