The Hydrocephalus Scoop on Capitol Hill – April 2026

CONGRESSIONAL UPDATES

Congress Moves on Health Care Access, Telehealth, and Brain Health

Congress is entering a pivotal stretch on health policy, and the decisions made this year will have real consequences for people living with hydrocephalus and other chronic neurological conditions. From affordability and coverage to telehealth and brain health, lawmakers are weighing policies that could either strengthen access to care or leave patients facing new barriers. For the Hydrocephalus Association, the message is clear: continued advocacy is essential to ensure that patients, families, and caregivers are not left behind.

Health Care Affordability

One of the biggest issues before Congress is health care affordability. Advocates are focused on reducing out-of-pocket costs, improving prescription drug affordability, and increasing transparency so patients better understand what care will cost before they receive it. These debates matter for the hydrocephalus community because the cost of ongoing treatment, imaging, specialist visits, surgeries, and follow-up care can add up quickly. Families need policies that make it easier, not harder, to get the care they need when they need it.

Research and Funding

We are currently entering the appropriations request phase, where we are asking Senator Murray and Congress to continue to champion the inclusion of hydrocephalus in the fiscal year 2027 budget package. As a member of the Defense Health Research Consortium, we will be requesting an overall increase of $116 million (5% increase of FY24 funding), which would bring the total funding for the Congressionally Directed Medical Research Program (CDMRP) to $1.626 billion for 2027. We will need your help in advocating for these needed funds!
   

Telehealth Access

Telehealth remains one of the most important access tools for the hydrocephalus community. Congress has extended Medicare telehealth flexibilities through December 31, 2027, which helps prevent immediate disruptions in care. These flexibilities preserve important options for virtual visits and certain coverage rules that patients have come to rely on since the pandemic. At the same time, lawmakers are considering permanent telehealth legislation, including proposals that would make access more reliable for the long term. We will continue to push for a long term solution so families do not have to face repeated deadlines every time Congress fails to act.

Brain Health

Brain health is also gaining greater attention in Congress. Federal public health and research discussions increasingly recognize cognitive health as a broad issue that affects people across the lifespan, not only older adults or those with dementia. That shift is important for the hydrocephalus community, because hydrocephalus directly affects brain function, development, and long-term quality of life. Policies that strengthen brain health research, improve coordination across agencies, and support prevention and early intervention can help build a stronger foundation for every person living with a neurological condition.

Congress is making decisions now that will shape access to care, provider availability, telehealth use, and public investment in brain health. The Hydrocephalus Association will continue to champion policies that protect access, support innovation, and improve outcomes for patients and families nationwide.

OPPORTUNITIES TO ENGAGE

We urge you to stay tuned for upcoming advocacy alerts. Your voice can help protect vital programs and ensure continued investment in services, education, and research.

• Wednesday, June 10th Hydrocephalus Advocacy Update

Want to deep dive into these issues? Don’t forget to join us for our quarterly Advocacy Update on June 10th at 7:00 pm Eastern. There is a NEW LINK! Click here to register.

• July 23-26, 2026 HA CONNECT National Conference on Hydrocephalus

Join us this summer in Indianapolis, home of the CDMRP-funded Hydrocephalus Research Center at Indiana University. Our three-day gathering brings together patients, caregivers, medical professionals, scientists, and industry leaders from around the world. Take part in interactive educational sessions, research updates, and discussions led by world-renowned experts. It’s an invaluable opportunity to learn, share, and be inspired alongside others who understand and support your journey. View the Conference Program. Register here today!