The Scoop from Capitol Hill – February 2025
CONGRESSIONAL UPDATES:
Congressional Budget Package:
House and Senate Republicans have been focused on passing the Administration’s priorities. The Senate approved a billion-dollar budget framework focusing on defense and border enforcement funding. On the other side of the Capitol, the House recently passed its own budget framework. This package is wider in scope and costs.
Why could this matter for healthcare, disability programs, and hydrocephalus? The House budget framework directs committees of healthcare jurisdiction (Energy and Commerce Committee) to slash $880 billion in domestic spending over 10 years. The areas that comprised the largest percentage of federal spending in Fiscal Year 2024 are Social Security (21%), Health (includes Medicaid and CHIP) (13.5%), Net Interest on Debt (13.1%), Medicare (12.9%), and Defense (12.9%). Here is a link to a great graphic that breaks down revenue and spending by the Federal government. The Department of the Treasury and the Bureau of the Fiscal Service also host an easy-to-understand explainer of the U.S. budget.
The President has stated that Medicaid and Medicare will not be cut. However, lawmakers face the difficult challenge of identifying cuts to meet budget goals while safeguarding key healthcare services. The House Budget framework’s proposed cuts will likely impact federal Medicaid funding, which provides essential coverage for a third of hydrocephalus patients. While Medicaid has been declared off-limits for reductions, the package would significantly cut federal Medicaid funding, which could alter provider reimbursements, limit coverage expansions, or introduce cost-sharing adjustments that may affect patients with chronic conditions like hydrocephalus. The House budget package now moves to the Senate for consideration. Once finalized, the House Energy and Commerce Committee will use the framework to implement the $880 billion in spending reductions. To understand more about the state healthcare program and its federal funding, read our Medicaid “Explainer”, Medicaid Coverage is a Lifeline for Many Hydrocephalus Patients.
We must urge Congress to protect funding for this program. Please use this action alert to ask your member not to cut funding for this lifesaving program and to highlight the importance of access to quality healthcare for individuals with hydrocephalus. In the Action Alert, don’t forget to share your personal experience of the need for stable healthcare access.
Prevent Harmful Cuts to Federal Medicaid Funding →
Government Funding Fiasco:
The federal government is set to run out of funding on March 14th. Unlike the budget package recently mentioned, Republicans must work with Democratic lawmakers to pass a bill that funds each government agency. If one fails to pass, there will be a government shutdown. Congress could instead pass a short or long-term continuing resolution (CR) that would continue to fund the government at existing levels. This could provide more time for both parties to craft a bipartisan deal. To learn more about the situation, click HERE.
First Hydrocephalus Caucus Addition in 2025:
Congresswoman Jen Kiggans (VA-02) became the first member to join the Congressional Pediatric and Adult Hydrocephalus Caucus in the 119th Congress. Representative Kiggans’ background has a strong overlap with healthcare, veterans, and hydrocephalus. Before Congress, she was a Navy wife and a board-certified adult geriatric primary care nurse practitioner. Her district encapsulates the location of the Virginia Beach Walk to End Hydrocephalus in Virginia. She also has large oversight of military and veteran issues in the U.S. House. As a member of the House Veterans Affairs Committee and Armed Services Committee, she will be integral in advocating for the thousands of veterans and their families affected by hydrocephalus.
Accelerating Kids Access to Care Act Reintroduced to the 119th Congress:
The Accelerating Kids Access to Care Act (H.R.1509) has been reintroduced in the U.S. House. The legislation, which has been a major priority of the Hydrocephalus Association in 2024, would require state Medicaid programs to establish a process for out-of-state providers to treat children without additional enrollment barriers. This would lessen barriers to care and ensure that patients with complex needs on Medicaid/CHIP can assess the required specialists no matter their location.
The bill passed the House with strong bipartisan support but narrowly failed to be passed into law last December. To urge members of Congress to cosponsor this crucial piece of legislation, click HERE!
PARTNERSHIPS IN THE HEALTH SPACE:
Extension of Medicare Telehealth Benefits:
The Hydrocephalus Association joined others in the healthcare policy space by signing a letter circulated by the Alliance for Connected Care urging Congress to extend telehealth coverage in Medicare. Last December, Congress temporarily extended Medicare telehealth access through March 31st, 2025. This extension allows eligible Medicare providers to continue furnishing telehealth services, enables federally qualified health centers and rural health clinics to provide virtual care, and delays in-person visit requirements, among other provisions.
If Congress fails to act to extend Medicare telehealth access, millions of patients will lose access to care they have become accustomed to since the pandemic. 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 urge members of Congress to expand telehealth access through Medicare, click HERE.
Preserving Funding for the AHRQ:
The Hydrocephalus Association signed on to a broad letter circulated from the Friends of AHRQ urging Congress to protect federal funding for the Agency for Healthcare Research and Quality (AHRQ). The agency is integral to patient health outcomes, funding research that identifies the best guidelines for healthcare providers and systems. It works to study new treatments and healthcare strategies, which helps improve medical quality and access for patients. The Hydrocephalus Association supports research into innovation and patient-centered outcomes. If we want to continue strengthening quality of care within the healthcare system, the AHRQ must be fully funded in 2025 and beyond.
Protecting NIH Medical Research Funding:
The Hydrocephalus Associated joined others in the research space by supporting a letter by Research!America urging Congress to protect NIH funding for 2025. The letter highlights the FY2025 Senate budget proposal which implements an NIH funding increase of $1.77 billion. This proposal must act as a funding floor to ensure the success of future biomedical breakthroughs. Most importantly, the letter urges Congress to repeal the recent NIH directive that limits NIH Facilities & Administrative cost reimbursements to 15%. The Hydrocephalus Association Medical Advisory Board and Scientific Advisory Board recently published a statement showing concern about the recent change.
To view the Research!America letter, click HERE.
RECENT ARTICLES AND STATEMENTS:
Medicaid Coverage is a Lifeline for Many Hydrocephalus Patients
Hydrocephalus Community Advocates for Change on Capitol Hill
OPPORTUNITIES TO ENGAGE
Wednesday, March 5 Hydrocephalus Advocacy Update
Be sure to visit our awesome Advocacy Center and take action on our legislative alerts. We need to ensure that Congress is hearing us loudly! Want to deep dive into these issues? Don’t forget to join us for our next Advocacy Update on March 5th at 7:00 pm Eastern. If you haven’t signed up yet, click here to register.