The Hydrocephalus Scoop on Capitol Hill — July 2025

CONGRESSIONAL UPDATES

The One Big Beautiful Bill Is Signed into Law

This month, Congress passed H.R. 1, the One Big Beautiful Bill Act, into law. HA has been closely monitoring this legislation, particularly its provisions related to healthcare funding. As enacted, the bill includes over $1 billion in reductions to federal Medicaid support, which independent analyses project could result in at least 11.8 million individuals losing healthcare coverage, many of whom live with chronic and lifelong conditions such as hydrocephalus.

Throughout the legislative process, grassroots advocates in the Hydrocephalus Action Network (HAN) actively engaged with policymakers to raise awareness about the importance of Medicaid for individuals living with hydrocephalus. Over 500 advocates contacted their members of Congress, and nearly 100 meetings were held with legislators and their staff to share the real-life implications of proposed changes to Medicaid coverage.\

HERE is HA’s statement on the legislation’s passage.

HA remains committed to working with lawmakers on both sides of the aisle to protect access to essential healthcare services for the hydrocephalus community and all individuals managing chronic health conditions. We will continue to educate community members on the Medicaid provisions in the bill and how they will impact coverage, access, and paperwork within Medicaid.

Those interested in learning about the timeline of the bill’s provisions can sign up for a webinar by Justice in Aging HERE.

Appropriations Top of Mind for Congress

Funding for the federal government is set to run out on September 30th. Members of Congress are working to pass the 12 appropriations bills in the House and Senate; however, it has become less likely there will be bipartisan agreement between the two parties. While House Republicans have passed a couple of the FY26 appropriations bills, they have chosen to go without bipartisan collaboration. On the other hand, the Senate Appropriations Committee has worked in a bipartisan manner to create its appropriations bills. They have failed to pass any of the 12 FY26 appropriations bills as of now. Traditionally, the House and Senate must come together in conference to agree on topline numbers to fund various government agencies like the Department of Health and Human Services (HHS)

The lack of appropriations success increases the likelihood of another continuing resolution (CR) or worse, a government shutdown. The federal government has been operating on a CR for over a year, meaning that Congress has failed to pass government funding levels. HA will continue to monitor the appropriations process to update our community on recent developments.

Congress Out for Recess

Members of the United States House and Senate will be back in their states and districts in August for their yearly summer recess. This period allows them to meet with their constituents to talk about legislation and policies impacting their communities, including healthcare coverage, access, and medical research. Many will be hosting town halls, which provide constituents an opportunity to voice their concerns and opinions.

PARTNERSHIPS IN THE HEALTH SPACE

Continued Support for the Preventive Services Task Force (USPSTF)

HA joined others in the patient advocacy space, signing onto a letter from Academy Health urging House and Senate healthcare committees to maintain independent representation on the United States Preventive Services Task Force (USPSTF).

The USPSTF is 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. Independent experts on the task force ensure that partisan politics do not get in the way of scientific and medical expertise, therefore continuing equitable access for vulnerable patients.;

Appropriations for Health Funding

The Hydrocephalus Association joined others in the health space, signing onto a letter by the Coalition for Health Funding House and Senate appropriations to fund federal agencies and various programs under the Departments of Labor, Health and Human Services (HHS), and Education and Related Agencies appropriations bill for FY2026. The bill, one of the 12 appropriation bills that fund government agencies each year, includes funding for health agencies like the National Institutes of Health (NIH), Food and Drug Administration (FDA), and Centers for Disease Control and Surveillance (CDC). Strong federal support for these agencies will ensure the creation of new treatments, innovation, and healthcare services available to American patients.

To view the letter, click HERE.

Extending Telehealth Coverage Through Medicare

The Hydrocephalus Association joined others in the patient advocacy space, signing onto a letter from Alliance for Connected Care urging congressional leaders to extend telehealth coverage on access for Medicare beneficiaries. Telehealth provisions in Medicare, originally established during the Covid-19 pandemic, are set to expire in September, jeopardizing virtual services for millions of Americans on Medicare.

Telehealth provides flexibility to hydrocephalus patients on Medicare. Older Americans with normal pressure hydrocephalus (NPH) or patients qualifying through SSDI regularly access virtual care for follow-up visits after neurosurgery, reducing the burden of travel – especially for those in rural or underserved areas with limited or no access to neurosurgeons. Protecting and extending Medicare telehealth access is essential to ensuring these patients can continue receiving the care they need.

To view the letter, click HERE.

Streamlining the Breakthrough Device Pathway

The Hydrocephalus Association joined others in the health space, signing onto a letter by AdvaMed encouraging the Centers for Medicare and Medicaid to create a streamlined process for Medicare patients to access medical devices approved through the Food and Drug Administration’s (FDA) Breakthrough Devices Program.

A designation from the program enables priority review and enhanced communication with the FDA during the clinical trial and premarket review process. This allows medical technology with critical impact to reach patients faster. The FDA’s Breakthrough Devices Program has supported the development and fast-track review of life-changing hydrocephalus technologies, including Cerevasc’s eShunt System, a minimally invasive treatment for Normal Pressure Hydrocephalus (NPH), offering an alternative to traditional brain surgery. Anuncia Medical’s ReFlow™ External Ventricular Drain (EVD) device, which enhances the safety and functionality of hydrocephalus shunting systems, gained designation under the program as well.

RECENT POLICY ARTICLES, STATEMENTS, AND ACTION ALERTS

• Issue Brief: Expenses Crucial for Biomedical Research – Indirect Costs
• Hydrocephalus Association Statement on Reconciliation Bill Passage
• Hydrocephalus Association Applauds Introduction of the Medical Research for Our Troops Act
• Testimony from the Hydrocephalus Association – U.S. Senate Committee on Appropriations Hearing
• Assessing Recent HHS Reductions in Force (RIF) Layoffs and Their Impact on the Hydrocephalus Community
• Cosponsor the Medical Research for Our Troops Act (H.R. 3906) –  Email Action Alert

OPPORTUNITIES TO ENGAGE

• Wednesday, September 3 Hydrocephalus Advocacy Update

Want to deep dive into these issues? Don’t forget to join us for our next Advocacy Update on July 2 at 7:00 pm Eastern. If you haven’t signed up yet, click here to register. 

• 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 Davis@hydroassoc.org if you are interested in attending or have any questions. 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!