Get the Hydrocephalus Scoop on Capitol Hill for February 2024
Hydrocephalus Association Advocacy Update
Updates from Washington….
Congress has once again averted another shutdown. Yes, you heard that right, another shutdown… This short term continuing resolution (CR) will fund the government until March 8 and March 22. This will hopefully give both chambers enough time to pass the 12 FY 2024 appropriations bills that need funding. This includes the Defense Appropriations Bill that funds the Congressionally Directed Medical Research Program (CDMRP), which funds groundbreaking hydrocephalus research each year. If funding for this program is not passed soon, there will not be enough time for the research grant process to take place and for awards to be granted for 2024.
For this reason, we need YOU to urge members of Congress to pass the bipartisan Defense Appropriations Act so research grants from the CDMRP can be properly allocated to researchers. To take action, the link is provided below!
Letter in support of HC Workforce Resilience Act
The Hydrocephalus Association has joined others in the health space by signing onto a letter circulated by Physicians for American Healthcare Access in support of the Healthcare Workforce Resilience Act (H.R. 6205/S. 3211). The bipartisan bill would reallocate 15,000 unused employment-based physician immigrant visas (allow foreign-born physicians to practice in America) and 25,000 unused employment-based professional nurse immigrant visas from previous fiscal years (1992–2021). The visas would become available immediately upon the date of enactment of the legislation and remain available for a three-year period.
This bill is especially urgent given the current workforce shortages present in the U.S. healthcare system. Qualified physicians from other countries, particularly those that have completed their education at U.S. medical schools, can fill the current gaps in rural and underserved communities lacking access to proper care.
Telehealth Call to Action Letter
The Hydrocephalus Association has joined others in the patient organization community by signing on to a letter circulated by the Alliance for Connected Care calling for action on telehealth that allows for implementation time prior to the expiration of the telehealth Pandemic Health Emergency (PHE) provisions on December 31, 2024.
Telehealth is especially important to the hydrocephalus community given the flexibility it provides for patients. Telehealth allows individuals and families to access care for providers who are not in close proximity to them, particularly for routine check-ins when no medical emergency is present.
Letter in Support of Strengthened FY25 NIH Funding
The Hydrocephalus Association recently signed onto a letter by the Ad Hoc Group of Medical Research urging for an increase in FY 2025 funding levels for the National Institutes of Health (NIH). They recommend that the NIH be funded at a topline number of $51.303 billion. This would be a 7.5% increase from the FY 2024 Senate Appropriations Committee level. The NIH funds a wide variety of hydrocephalus research each year, including the current study on the effectiveness of shunting for NPH patients. You can read about ongoing clinical trials here.
SSI Restoration Act Endorsement
The Hydrocephalus Association recently endorsed the Supplemental Security Income (SSI) Restoration Act (H.R.7138). The bill would increase benefits to the Federal Poverty Level, repeal the marriage penalty that provides less benefits to SSI recipients if they are married, increase the amount of savings a recipient can have while still qualifying for benefits, and create other changes within the SSI program. Many of the current SSI eligibility rules have not been updated in over 50 years leaving the program severely outdated. New updates to the program like the provisions in this bill will provide stronger assistance to individuals with disabilities.
New Caucus members!
The Pediatric and Adult Hydrocephalus Caucus has welcomed three new members of Congress! Congressman Morgan McGarvey (KY-03) joined as the first representative on the Caucus from Kentucky. He will now represent the individuals and families who attend the Louisville Walk to End Hydrocephalus each year. Click HERE to see the press release for Representative McGarvey’s new membership!
Congressman Derrick Van Orden (WI-03) became the first representative from Wisconsin to join the Caucus. A big thank you to hydrocephalus advocates and constituents of Representative Van Orden, Dorothy Sorlie and Toni Traveline, who worked tirelessly with our advocacy team to meet with his office.
Congressman Jerry Nadler (NY-13) joined Congressman Ritchie Torres (NY-15) as the second lawmaker from New York on the Caucus! We are so excited to welcome these three new members and work with them on issues important to the hydrocephalus community. This brings Caucus membership to 22 members! If you are a constituent, feel free to reach out to their office to thank them!
View the full Caucus membership here.
OPPORTUNITIES TO ENGAGE
March 6 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 6, 2024, at 7 pm eastern. If you haven’t signed up yet, click here to register.
March 15 Hydrocephalus Caucus Briefing
The Pediatric and Adult Hydrocephalus Caucus is hosting its first caucus briefing in 5 years! The caucus briefing will educate congressional staffers on issues important to the hydrocephalus community. Our briefing panel will discuss the research funded by the Congressionally Directed Medical Research Program (CDMRP) that will have a direct benefit for service members, Veterans, children, and their families.
Speakers will include both CDMRP-funded scientists and military families who will share how advances in new drug treatments and devices implanted in the brain funded by the CDMRP will ease the burden of living with hydrocephalus and other neurological conditions.
Urge the D.C. office staff of your representatives to attend the caucus briefing to learn more about the research providing hope for our community!