The Hydrocephalus Scoop on Capitol Hill — August 2025
CONGRESSIONAL UPDATES
Members of Congress have returned from August recess…and there’s a lot of work to do! Here’s where things stand:
The One Big Beautiful Bill Becomes Law
As reported, In July, Congress passed and the President signed H.R. 1, the One Big Beautiful Bill Act.
The law includes over $1 billion in Medicaid cuts. According to the nonpartisan Congressional Budget Office (CBO), at least 10 million people will lose coverage by 2034. That includes 7.5 million individuals—many living with chronic conditions like hydrocephalus—who will lose Medicaid entirely.
Key changes include:
- New work requirements for Medicaid eligibility
- Tighter limits on retroactive coverage
- Rollbacks of simplified enrollment processes
Experts warn these changes will hit low-income older adults, people with disabilities, and family caregivers the hardest.
What happens next?
Because federal law now mandates Medicaid work requirements, states must design and run their own systems. This includes:
- Creating tracking and reporting mechanisms
- Adjusting existing waivers and designing new ones for home and community health, traumatic brain injury, and disability programs
Many of our partner organizations, including the Brain Injury Association of America (BIAA), are working with state governments to make sure tracking systems are accessible, exemptions protect appropriate individuals, and care continuity is maintained.
If you are affected, check what changes are coming in your state and consider emailing your elected officials to voice concerns about Medicaid protections.
The changes in H.R.1 are being implemented now, with timelines developed to explain how and when the changes will take place. We have provided some resources below. HA will continue to track implementation closely, provide guidance on changes to coverage and paperwork, share opportunities to join webinars from our partner organizations, and advocate for maintaining access to critical healthcare.
Resources on H.R.1:
HA’s full statement HERE.
Justice in Aging: Section-by-section summary of H.R. 1 and implementation timeline
Justice in Aging: Medicaid Defense Page (articles, webinar recordings, timelines)
Appropriations Showdown Is Here
Government funding expires September 30, 2025. Every year, Congress must pass funding bills—called appropriations bills—to keep the federal government running. There are 12 appropriations bills that oversee the major agencies and activities of the government. If these bills aren’t passed on time, the government risks shutting down.
In May, the President released his budget proposal, which includes two major changes we’re watching closely:
- Restructuring NIH from 27 to 8 institutes, with a nearly 40% funding cut. This is discussed more below.
- Eliminating the Administration for Community Living, which supports disability priorities
The budget proposed by Congress is informed by the budget put forth by the President, though sometimes Executive and Legislative branches’ priorities do not align, as we are seeing in early appropriations debates. Ultimately, Congress controls federal funding.
Both the House and Senate are working to pass the appropriations bills.
- Senate: Passed 3 bills with bipartisan support. On July 31, the Senate Appropriations Committee approved the FY 2026 Labor-HHS-Education bill (26–3). It funds NIH at $48.7 billion (+$400 million from FY 2025), including $334.9 million for the BRAIN Initiative (+$12 million from FY 2025 and includes includes $195 million in mandatory 21st Century Cures Act). ARPA-H stays flat at $1.5 billion.
- Bright side: The Senate proposals are a positive step, as the BRAIN Initiative sustained substantial cuts in FY 2024 and FY 2025 due to the drop in 21st Century Cures Act funding and a lack of additional discretionary funding.
- House: Passed 2 bills along party lines. On September 2, the House released its Labor-HHS-Education bill and plans to move it forward soon.
Eventually, the House and Senate must work together to agree on final funding levels for important agencies like the Department of Health and Human Services (HHS) which oversees NIH. With just over 25 days before the deadline, Congress must either:
- Pass all 12 full-year funding bills, or
- Approve a temporary funding measure called a continuing resolution (CR)
Otherwise, a government shutdown looms. The Hydrocephalus Association will keep monitoring appropriations to protect funding for NIH, HHS, special education, and labor programs critical to our community.
Current Threats to NIH Funding
NIH funding is facing multiple threats from executive actions, stalled grant processes, and proposed budget cuts.
Grant freeze attempt: In early 2025, the administration tried to freeze all federal grant funding—including NIH—through an Office of Management and Budget (OMB) directive. Courts blocked this, reaffirming that only Congress controls spending.
NIH leadership changes: New leadership has enacted sweeping changes, including major staff reductions and a cap on indirect (overhead) costs at just 15%. This cuts deeply into universities’ ability to house labs, support faculty, and sustain biomedical research infrastructure. We have heard from some of our research partners that their hydrocephalus research could be at risk as universities evaluate their programs and budgets.
Budget proposal: The administration’s FY 2026 plan would cut NIH’s budget by 40%—from $47 billion to $27 billion. The plan would also eliminate the National Institute on Minority Health and Health Disparities and the National Institute of Nursing Research—gutting areas that focus on equity and underrepresented communities.
New Executive Order (Aug 7): “Improving Oversight of Federal Grantmaking” gives senior political appointees broad authority over grant review processes, requires alignment with administration priorities, and allows agencies to terminate grants at any point.
At the same time, Congress has delayed FY 2025 NIH grant distributions. This slow disbursement has interrupted ongoing research, put jobs at risk, and threatened public trust in NIH funding. Fourteen Republican senators recently urged the White House to release these overdue funds immediately.
Public opinion strongly supports research: 77% of Americans oppose cutting federal medical research funding (Washington Post–ABC–Ipsos poll). Senate actions show bipartisan recognition that NIH is essential to progress against diseases that affect millions.
There is clearly momentum in Congress which underscores the importance for researchers, practitioners, caregivers, and patients impacted by NIH funding freezes and potential cuts to speak out. We need to raise awareness about these impacts and the progress made for hydrocephalus through medical research. We know what’s at stake! Visit our Action Center to write your member of Congress today.
Do you live in Kansas, North Carolina, Pennsylvania, or Utah?
Research!America is launching a campaign to raise awareness about
the impacts if NIH funding is reduced or eliminated. If you’re willing to share your story, email NIHStories@skdknick.com. Your experience may be used in media interviews, op-eds, or social media campaigns. Anonymous submissions are welcome.
Partnerships in the Healthcare Space
HA joined the National Health Council (NHC) and over 130 stakeholder groups to support the Clinical Trial Modernization Act (H.R. 3521). The bill would help remove barriers to patient participation in clinical trials through financial support and remote participation options.
HA joined the Partnership to Protect Coverage to urge Congressional leadership to reauthorize the Enhanced Advance Premium Tax Credit (eAPTC). In a letter, the organizations stated that “if Congress allows the eAPTCs to expire at the end of the year, an estimated 4.2 million people will lose their health insurance.”
NHC submitted comments to the FDA Medical Device User Fee Amendments (MDUFA VI) emphasizing sustained FDA capacity through predictable and transparent user fee structures, expanded patient engagement in device development, strengthened real-world evidence and post-market surveillance systems, and ensured oversight that keeps pace with digital health and AI-enabled technologies.
AARP and the National Alliance for Caregiving released a sweeping new report that paints a stark picture of the state of family caregiving in America. Caregiving in the U.S. 2025 reveals that 63 million Americans—nearly 1 in 4 adults—provided ongoing care for an adult or a child with a complex medical condition or a disability in the past year, an increase of 20 million from 2015 to 2025. Of these 63 million caregivers, 59 million were caring for someone over 18. The report is available here.
COMING UP!
We urge you—our powerful community of advocates—to stay tuned for upcoming advocacy alerts. Your voice can help protect vital programs and ensure continued investment in services, education, and research.
- September is Hydrocephalus Awareness Month!
September is Hydrocephalus Awareness Month and September 20th is World Hydrocephalus Day. All month, the Hydrocephalus Association will deep dive into what it really means to live with hydrocephalus Follow us on social and help us raise awareness by sharing our content throughout the month! You can find more information on our HAM 2025 webpage.
We are also joining with organizations around the globe to raise awareness about the global burden of hydrocephalus, particularly in lower and middle income developing countries. Visit the World Hydrocephalus Day website here.
- Monday, September 15 Genes, Brain Development, and Hydrocephalus Webinar
Join Dr. Ryann Fame as she shares some of her research as a developmental biologist. Her work explains how genes expressed early while the brain is forming can play a part in the development of congenital hydrocephalus. This research also helps explain how the early brain develops from neural stem cells, including how the very first cerebrospinal fluid (CSF) is made. Dr. Fame is dedicated to understanding prenatal brain development and CSF biology to inform strategies to treat neurodevelopmental diseases.Click here to register.
- Wednesday, September 17 – Thursday, September 18 Rally for Medical Research
Registration is now open for the Rally for Medical Research in-person Capitol Hill Advocacy Day in Washington, DC. Join patients, caregivers, providers, and researchers in advocating for the National Institutes of Health (NIH) to members of Congress.The Hydrocephalus Association cannot offer financial assistance to advocates, but we’d love to have you attend if you’re able. Please contact advocacy@hydroassoc.org if you are interested in attending or have any questions. We’d love to know who is coming so we can connect! 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!