The Hydrocephalus Scoop on Capitol Hill – May 2026
CONGRESSIONAL UPDATES
Congress Tackles Affordability But Much Work Remains
Congress has made health care affordability a major theme in 2026, holding hearings on insurance premiums, provider pricing, and prescription drug costs. In January, House committees questioned top health insurance executives about rising premiums, deductibles, and out-of-pocket costs, launching what lawmakers described as a broader effort to understand the root causes of higher health care prices.
In March, the House Energy and Commerce Subcommittee on Health examined how hospitals, physicians, transparency, and payment policies affect affordability, while also highlighting the value of home and community-based services for people with disabilities.
In April, the Senate Health Education Labor and Pensions (HELP) Committee turned to prescription drug affordability and the role of competition in lowering costs for families. Most recently, in May, the Senate HELP Committee held a field hearing on health care affordability with employers, patients, and providers, and House committees continued their focus on insurer practices such as prior authorization and market consolidation.
For the Hydrocephalus Association, these hearings create an opening to keep pushing on issues that matter most to patients: transparent pricing, lower out-of-pocket costs, stable telehealth access, and stronger competition in prescription drugs and insurance markets. The policy conversation is also increasingly recognizing that cost is an access issue, not just a budget issue, which aligns closely with the HA advocacy agenda. As Congress continues these hearings, disability-focused organizations have an opportunity to reinforce how affordability reforms affect real people managing lifelong neurological conditions.
Updates On Hydrocephalus and Medical Research Funding
Early projections for next year’s 2027 funding bills are that Congress is already underway with hearings and requests, but the process is still in its opening phase rather than near final numbers. The President’s 2027 budget proposal was released on April 3, and congressional leaders are holding hearings and congressional floor action will likely happen before the August congressional recess, with the fiscal year ending on September 30. The broad policy direction in the White House proposal points to tighter domestic spending, while groups like the Hydrocephalus Association are already pressing for increased funding in priority areas such as health, research, and local services. In practical terms, that means the next few months will determine whether 2027 becomes a year of flat funding, targeted cuts, or selective increases, especially for programs tied to health care and medical research. We will keep you updated and will be strong advocates on Capitol Hill.
OPPORTUNITIES TO ENGAGE
- 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!