The Hydrocephalus Scoop on Capitol Hill — May 2025

CONGRESSIONAL UPDATES

Reconciliation Package and Medicaid Cuts Narrowly Pass U.S. House

The U.S. House recently passed the One Big Beautiful Bill Act (H.R. 1) by a vote of 215 to 214. The bill’s passage comes after months of inter-party Republican negotiations on the measures of the reconciliation package impacting taxes, Medicaid, Supplemental Nutrition Assistance Program (SNAP), defense, and immigration enforcement. The large majority of patient advocacy, provider, and healthcare organizations have come out against the package due to its short and long-term impact on state Medicaid programs that would cause at least 8.6 million patients to lose coverage. The provisions most impactful to hydrocephalus patients are provided below.

• Federal Medicaid Work Requirements: The proposal would require some individuals in Medicaid to partake in at least 80 hours per month of work, community service, work program, or an education program to qualify for Medicaid coverage. These requirements would not apply to “pregnant women, individuals under the age of 19 or over the age of 64, foster youth and former foster youth under the age of 26, members of a Tribes, individuals who are considered medically frail (which includes, but is not limited to, individuals who are blind or disabled, who have a chronic substance use disorder, who have a serious and complex medical condition, or who have a condition, as defined by the State and approved by the Secretary, as meeting the definition of medically frail), individuals who are already in compliance with the work requirements under the Temporary Assistance for Needy Families (TANF) program or Supplemental Nutrition Assistance Program (SNAP), individuals who are a parent or caregiver of a dependent child or an individual with a disability, or are incarcerated or recently released from incarceration within the past 90 days.” While the new rules may seem like common sense, the concern is that they would result in unintended consequences that negatively impact vulnerable patients.

New Medicaid work requirements would create additional administrative workload for beneficiaries, including those who are technically exempt. For individuals with hydrocephalus or other chronic conditions, especially those who experience intellectual or cognitive challenges, the added paperwork and documentation can be confusing and burdensome. Many already struggle to navigate complex systems like Medicaid or SSI, and new layers of administrative requirements only increase the risk of errors. Missing or incorrectly completed paperwork could result in the loss of coverage that provides access to essential, often life-saving care. According to the Congressional Budget Office, these changes could result in at least 8.6 million people losing their health and long-term care coverage.

• Reducing the Retroactive Coverage Timeline to 1 Month: Medicaid currently provides retroactive coverage for up to three months before a patient’s enrollment, helping to relieve the financial burden of medical care received before official approval. This grace period ensures that individuals can seek necessary treatment without fear of overwhelming medical debt while waiting for their application to be processed. The proposed change would reduce that retroactive coverage window to just one month, significantly limiting the period during which patients can be reimbursed for healthcare services.The change does not consider the reality that Medicaid approval can often take up to 5 months. Shortening the retroactive coverage period to one month creates a dangerous mismatch between how long approval processes actually take and how long patients are protected financially. For those living with conditions like hydrocephalus, this gap could mean the difference between accessing life-saving care or being forced to go without it.
• Capping the Ability for States to Implement New Medicaid Provider Taxes: In every state except Alaska, Medicaid programs are partly funded through special taxes on healthcare providers like hospitals, nursing homes, or insurance plans. The most common groups taxed are large hospitals, nursing facilities, and care centers for people with disabilities. States collect this money and then often return it to providers who care for Medicaid patients, helping to cover the cost of services.This gives states a way to raise extra money to support Medicaid, whether to maintain current services, expand benefits, or respond to new healthcare needs. The federal government also helps by matching some of the funds raised through these taxes. The proposed policy would cap how much states can tax these providers and prevent them from creating new provider taxes in the future. This would limit states’ ability to bring in new funding for Medicaid and make it harder to close gaps in care, like for Home and Community Based Services (HCBS), for which over 700,000 patients nationwide are currently waiting to access. The new policy would create tough budget trade-offs for states and eliminate options that help states fund coverage for patients with high-cost conditions like hydrocephalus who depend on consistent, specialized care.
• New Cost-Sharing Requirements for “Expansion Adults” on Medicaid: The bill would require states to charge low-income adults small fees (called cost-sharing) for certain Medicaid services. This would affect people who get Medicaid through the expansion program—mainly single adults earning up to 138% of the federal poverty line (approximately up to $15,650 to $21,600 per year, depending on your state). These fees would not apply to people on traditional Medicaid, such as children, pregnant women, or individuals who qualify through Supplemental Security Income (SSI).Each service could cost patients up to $35. Providers would also be allowed to refuse care if a patient cannot pay. Some services would be excluded from these fees, including pregnancy care, emergency services, hospital stays, nursing home care, hospice, family planning, COVID-19 testing, and vaccines. Even though most people with hydrocephalus who are on Medicaid qualify through SSI and wouldn’t be affected, some do qualify through the low-income expansion group, and they would be. Hydrocephalus is not officially listed as a qualifying disability under Social Security’s guidelines, so many people with complex cases still don’t receive SSI benefits, even if their condition seriously affects their ability to work. For those patients, these new costs could create serious financial barriers. Even small copays can be too much for people already struggling to make ends meet. And for people living with a condition like hydrocephalus, delaying or skipping care due to cost can be dangerous and even life-threatening.

The legislation now goes to the Senate, where lawmakers will likely make major changes. Many Republican senators have raised concerns and opposition to the Medicaid provisions within the bill. Once the bill is amended and passed in the Senate, it will go back to the House for another vote. Republican leaders in the House and Senate have reinforced their preferred deadline of July 4th for the bill’s passage.

Breakthrough Legislation Introduced in the Senate

Lawmakers in the U.S. Senate have reintroduced the Ensuring Patient Access to Critical Breakthrough Products Act (S. 1717). The legislation would grant immediate Medicare coverage for medical technology approved through the FDA Breakthrough 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.

PARTNERSHIPS IN THE HEALTH SPACE

Opposition to HHS’s Elimination of Newborn Screening Programs

The Hydrocephalus Association joined others in the patient advocacy and rare disease space, supporting a letter by the National Organization for Rare Disorders (NORD) and other organizations bringing concern to HHS’ recent decision to eliminate the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). The ACHDNC served as a coordinating point for newborn screening guidance between HHS agencies like the Health Resources and Services Administration (HRSA), the National Institutes of Health (NIH), the Food and Drug Administration (FDA), and the Centers for Disease Control and Prevention (CDC). It provided crucial guidance to HHS leadership on universal newborn screening tests, technologies, policies, guidelines, and standards.

The ACHDNC was established through a 2007 bipartisan law titled the Newborn Screening Saves Lives Act. The advisory committee’s creation oversees the Recommended Uniform Screening Panel (RUSP), which decides the list of conditions and disorders recommended by the HHS secretary to states.

To view the letter, click HERE.

Support for FY2026 CDMRP Funding Restoration

The Hydrocephalus Association joined others in the Defense Health Research Consortium (DHRC) supporting a letter urging House and Senate appropriators to substantially fund the Congressionally Directed Medical Research Program in FY 2026. The letter also calls for supplemental appropriations to make up for FY 2025 funding cuts enacted by the Full-Year Continuing Appropriations and Extensions Act (Public Law 119-4).

The full-year continuing resolution cut topline CDMRP funding by $859 million, or 57%. Within the CDMRP, the Peer Reviewed Medical Research Program (PRMRP), which funds research for hydrocephalus, was reduced from FY24’s level of $370 million to $150 million. The CDMRP’s structure has led to integral success in hydrocephalus research. Funding has led to the first in-human pre-clinical trial for a drug combination that could prevent the development of hydrocephalus after a brain bleed, including hydrocephalus caused by traumatic brain injury (TBI). Research funded by the CMDRP has also helped create an innovative coating that will prevent the adherence of cells on the tubing in the brain, ultimately resulting in fewer shunt revisions.
To view the letter, click HERE.

Protecting the Orphan Drug Tax Credit

The Hydrocephalus Association joined others in the rare disease space, supporting another letter from the National Organization for Rare Disorders (NORD) urging Republican lawmakers to protect the Orphan Drug Tax Credit (ODTC) in the reconciliation package.

The Orphan Drug Tax Credit provides financial incentives to pharmaceutical companies that are investing in research and development for rare disease treatments. It allows for 50% of the qualified clinical testing expenses of orphan drug development to be deducted from the amount of federal taxes. Lower R&D costs for rare disease development incentivise pharmaceutical companies to invest in drugs or treatments for conditions with small populations that would otherwise be passed up due to low profitability.

To view the letter, click HERE.

RECENT POLICY ARTICLES AND ACTION ALERTS

Medicaid Impact of U.S. House Reconciliation Package on People with Hydrocephalus

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

Billy Joel’s Diagnosis of Normal Pressure Hydrocephalus

Tell U.S. Senators to Oppose the Reconciliation Package and Prevent Cuts to Medicaid! – Email Alert 

Restoring CDMRP Funding — Call Action Alert

OPPORTUNITIES TO ENGAGE

• Monday, June 2 HundredX Kick-off

Starting Monday, June 2nd, there is a way to give without spending money! Learn all about it and register here. Text “HYDRO” to 90412 to get started today.

• Saturday, June 7 Hydrocephalus and Chronic Pain Management Group

People living with hydrocephalus can experience specific types of chronic pain. This group will help you become familiar with the resources available to effectively manage your chronic pain symptoms. Join Dr. Maria Guglielmo as she facilitates engaging group discussions that will provide hope for individuals living with chronic pain. Click here to register.

• Wednesday, July 2 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.

• July 2026  HA CONNECT National Conference on Hydrocephalus

Did you catch our announcement about 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!