The Hydrocephalus Scoop on Capitol Hill — April 2025
CONGRESSIONAL AND LEGAL UPDATES
Congressional Reconciliation Process:
Congress has returned to Capitol Hill following Easter recess and is beginning the reconciliation process for a major legislative package. The package is expected to fund key Republican priorities, including tax reductions, immigration measures, and budgetary policy.
Earlier in March, House and Senate Republicans approved a budget resolution that sets the stage for significant spending reductions to domestic social and healthcare programs. The spending resolution directs the Energy and Commerce Committee to implement significant federal funding cuts to state Medicaid Insurance and SNAP benefits (food stamps). Lawmakers are now in the process of drafting the formal legislation. Click here to read some background from our past newsletter.
Although nearly all House Republicans supported the budget resolution directing the Energy and Commerce Committee to cut $880 billion from programs within its spending jurisdiction, with only one voting against it, some concerns have since emerged. Recently, 12 moderate House Republicans sent a letter to Republican leadership expressing concern about potential deep cuts to Medicaid within the reconciliation package. While the letter did not include specific policy proposals, it signals growing unease among some Republican members regarding federal funding reductions to Medicaid. Given the narrow Republican majority in the House, these members could play a significant role in shaping the final legislation.
These developments are because of grassroots patient advocates like YOU. We need to encourage Congress to protect federal funding for Medicaid. To take action, click THIS LINK.
National CDMRP Day of Action:
The Hydrocephalus Association partnered with multiple other patient, health, and provider organizations to engage grassroots patient advocates in a national advocacy day on behalf of the Congressionally Directed Medical Research Program (CDMRP). Over 300 different hydrocephalus advocates emailed and called their members of Congress to urge them to restore funding levels.
Congress recently passed a Continuing Resolution (CR) that implemented a 57% cut ($859 million) to the 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.
The Peer Reviewed Medical Research Program (PRMRP) – the program in which hydrocephalus is eligible – was cut from $370 million to $150 million (almost 50% less than FY24 levels). Over 20 other research areas, including lung cancer and traumatic brain injury, 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.
Despite the success of the Day of Action, the work is not done! We need advocates to continue pressuring members to amend these cuts to biomedical research within the CDMRP. Below are two action alerts centering on the issue.
CDMRP Call Action Alert
CDMRP Email Action Alert
Supreme Court Case on Preventive Service Coverage:
The Supreme Court is currently hearing arguments on a case that could change the rules requiring private insurance plans to cover important health screenings, tests, preventive services, and medications at no cost to patients. The decision could have a major impact on access to affordable preventive care, especially for people with chronic health conditions.
These coverage rules were created under the Affordable Care Act (ACA), which established the U.S. Preventive Services Task Force (USPSTF) – a group of independent health experts who review medical research and recommend preventive services, including various screenings, behavioral counseling, and medication. Today, insurance companies must cover services rated “A” or “B” by this task force without charging patients.
If the Supreme Court rules against the current rules, insurers would not be required to cover these services for free, making it harder and more expensive for people to get care that helps prevent serious health problems. Experts warn that cutting access to preventive care will cause more serious and expensive health problems in the future. A final decision is expected by June.
PARTNERSHIPS IN THE HEALTH SPACE
NIH Funding in 2026:
The Hydrocephalus Association signed onto a letter by the Ad Hoc Group for Medical Research, which urges congressional appropriators to increase and protect 2026 funding for the National Institutes of Health (NIH). The NIH is the single largest funder of federal hydrocephalus research.
Recent federal cuts to indirect cost reimbursement threaten the state of American biomedical research. Congress must retain its bipartisan commitment to biomedical research to ensure that life saving cures and new forms of innovation are not left on the table.
RECENT POLICY ARTICLES AND ACTION ALERTS
Hydrocephalus Association CDMRP Letter to the U.S. Senate
Medicaid Coverage is a Lifeline for Many Hydrocephalus Patients
Protecting Federal Medicaid Funding — Email Action Alert
Restoring CDMRP Funding — Call Action Alert
OPPORTUNITIES TO ENGAGE
- Wednesday, May 14 Hydrocephalus Advocacy Update
Want to deep dive into these issues? Don’t forget to join us for our next Advocacy Update on May 14th at 7:00 pm Eastern. If you haven’t signed up yet, click here to register.
- July 23-26, 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!