Hydrocephalus Community Advocates for Change on Capitol Hill

The Hydrocephalus Association brought together over 50 key volunteer leaders from the hydrocephalus community to advocate for meaningful change on Capitol Hill. Participants included WALK to End Hydrocephalus Chairs, Community Network Leaders, and dedicated patients and caregivers who met with congressional representatives to raise awareness of those affected by the condition.

As HA’s first hydrocephalus-specific Hill day since 2021, advocates had the opportunity to address the most pressing issues facing the community and share details about local events in each lawmaker’s district. Each advocate meeting emphasized the importance of federal and state programs that have the greatest impact on the hydrocephalus community, including access to lifesaving research funding and healthcare coverage.

Attendees met with U.S. House and Senate offices to discuss a range of issues, including:

• Protecting federal funding for state Medicaid programs: Medicaid coverage is essential for the health and well-being of individuals living with hydrocephalus. Approximately one-third of hydrocephalus patients requiring annual shunt-related hospital admissions rely on Medicaid for critical procedures. Proposals to reduce Federal Medicaid Assistance Payments (FMAP) or impose per capita caps could restrict state healthcare funding, potentially leading to coverage cuts for current beneficiaries. Advocates urged lawmakers to protect this vital program.
• Protecting federal funding for the National Institutes of Health (NIH): The National Institutes of Health (NIH) is the largest source of funding for hydrocephalus research. Its support has led to important discoveries that improve treatments and bring hope for prevention or cures. However, with research costs rising, funding cuts could slow down progress. Advocates stressed the need for sustained NIH investment to continue life-saving research.
• Maintaining federal funding for the Congressionally Directed Medical Research Program (CDMRP): The CDMRP funds groundbreaking research on hydrocephalus. This program has supported projects such as the first Hydrocephalus Research Center at Indiana University School of Science and the first clinical trial of a drug to prevent hydrocephalus after a brain bleed. In 2023, the program provided $11.78 million for hydrocephalus research and $1.57 million in 2024. Advocates asked lawmakers for continued support of this program.
• The Congressional Pediatric and Adult Hydrocephalus Caucus: Chaired by Congressman Chris Smith (NJ-04) and Congressman Lloyd Doggett (TX-37), this bipartisan coalition brings together Representatives to collaborate on policies, legislation, and federal programs that impact the hydrocephalus community. By the end of 2024, the Caucus reached a record 39 members, allowing the Hydrocephalus Association to partner on a variety of important issues.

For many attendees, this was their first time meeting with their elected Representatives. For some, it was their first time in Washington, D.C. The powerful stories shared by advocates represented the thousands of individuals who participate in HA WALKs, connect through community networks, and, most importantly, the over 1 million people living with hydrocephalus.

“Advocating in D.C. is about giving a voice to every person living with hydrocephalus,” said Betsy Conyard, Seattle WALK to End Hydrocephalus Chair. “We raise awareness about issues that directly affect our community and push for research funding so that every family living with this condition has hope for a better future.”

“Meeting with our state’s congressional offices was an amazing experience!” said Sarah McClellan, Indiana Community Network Leader who was joined on Capitol Hill by her 13-year-old son. “We loved having the opportunity to make a difference by sharing our story, and the issues that are important to our community, with our elected officials.”

The voices of patients are more crucial than ever in shaping lawmakers’ decisions. Events like this send a clear message to Congress: the hydrocephalus community is strong, engaged, and committed to advocating for meaningful change.

The Hydrocephalus Association remains dedicated to amplifying our community’s voice and driving meaningful change for those affected by hydrocephalus. If you want to become an advocate, join the Hydrocephalus Action Network.