The Hydrocephalus Scoop on Capitol Hill for October 2023
Updates with the Congressional Pediatric and Adult Hydrocephalus Caucus
We have great news for everyone! We recently met with staffers from each of our two caucus co-chairs, Representative Lloyd Doggett (TX-37) and Representative Chris Smith (NJ-4). We discussed a variety of issues, including the reconstitution of the caucus for the 118th Congress, the 2024 schedule for Hydrocephalus Caucus briefings, the Congressionally Directed Medical Research Program (CDMRP), and challenges associated with transition from pediatric to adult care within the hydrocephalus community. Both staffers are looking forward to working with us on the 2024 briefings and addressing the challenges around transition as well as other legislative priorities we outlined.
We are now meeting with various offices to strengthen membership in the caucus. We are looking forward to educating congressional offices on hydrocephalus, the recent momentum we’ve had on the research side, and policy challenges within our community. By strengthening membership in the Caucus, we can spread congressional awareness on hydrocephalus and mobilize new funding and policy opportunities. We will further discuss ways that you can help us strengthen our caucus membership during the next advocacy update on November 1st.
Endorsement of the Mental Health Research Accelerator Act
The Hydrocephalus Association recently joined others in the research community in endorsing the Mental Health Research Accelerator Act (H.R. 5821). This bipartisan bill, which was introduced by Representative Mike Kelly (PA-16) and Representative Mike Thompson (CA-4), incentivizes private companies to partner with academic or nonprofit research institutions on funding neurological research. The bill would provide $10 billion in allocable tax credits over a six-year period to nonprofit, state and local agencies, and private companies who collaborate on neurological research. The credits would cover up to 25% of allowable expenses for the research.
HA Joins Letter in Support of Telehealth Expansion Act
The Hydrocephalus Associated joined over 160 other healthcare and patient organizations in signing onto a letter led by the Alliance for Connected Care urging Congress to pass the Telehealth Expansion Act. This bill would permanently allow individuals with High Deductible Health Plans (HDHP) – Health Savings Accounts (HSAs) to access telehealth on a pre-deductible basis. Telehealth has been especially helpful to the hydrocephalus community as it allows for individuals to receive routine non-emergency care or to access physicians and specialists who may be far away or out of state. For more information on the letter, click HERE.
HA’s New Coalition to Address Pediatric to Adult Care Transition.
The Hydrocephalus Association partnered with the Spina Bifida Association to create a new coalition called the National Partnership for Pediatric to Adult Care transition (NPPACT). The coalition was created to address the unmet needs among patient communities that have a growing number of young adults transitioning from pediatric specialty clinics. NPPACT aims to work with partners throughout the patient stakeholder community to ensure that our nation’s federal policies, investments, and programs begin to reflect the growing need for continuity of care for young adults as they age out of the pediatric specialty care system. This transition has been one of the largest challenges to the hydrocephalus community and we hope to address new policy solutions with the creation of this coalition.
Our CEO, Diana Gray, along with SBA CEO, Sara Struwe, recently educated patient organizations about the launch of NPPACT at the “Somewhere To Go Transition of Care for Adults with a Rare Disease” meeting hosted by the Osteogenesis Imperfecta Foundation.
Share your Disability Story with the ARC
The ARC is requesting information from people with disabilities to give to policy makers at the Department of Health and Human Services (HHS). This information will help the HHS update existing rules that address discrimination against people with disabilities in government-funded health care programs. If you have ever been discriminated against within the healthcare system, please click HERE to share your story.
HA Provides Feedback to Senate HELP Committee on NIH Research
The ranking member of the Senate Committee on Health, Education, Labor, and Pensions, Senator Bill Cassidy (R-LA), recently sent out a request for information on ways to better strengthen the current NIH (National Institutes of Health) processes. The hydrocephalus research community has received a variety of research grants from the NIH so we were very interested in answering their request. We were able to collaborate with our research network to craft an in-depth response to Senator Cassidy about ways the NIH can strengthen their grant processes, bolster the biomedical research workforce, and balance basic, translational, and clinical research. We hope to continue our collaboration with Senator Cassidy’s office to address these topics moving forward.
OPPORTUNITIES TO ENGAGE
November 1 Hydrocephalus Advocacy Update
Want to deep dive into these issues? Don’t forget to join us for our next Advocacy Update on November 1st. If you haven’t signed up yet, click here to register.
November 4 HA Virtual Conference
Join the largest worldwide online conference about hydrocephalus! The conference opens Friday, November 3rd with online networking opportunities and closes on Sunday, November 5 with our Kids Camp. The main event takes place on November 4 and features educational sessions to address the medical, educational and social complexities of living with hydrocephalus hosted by world-renowned medical professionals and researchers. Learn more and register.
November 10 HA 40th Anniversary Gala
Join HA as we honor our legacy and look toward the future at our 40th Anniversary Gala in Anaheim, California. Justin Willman, the mastermind behind Netflix’s hit sensation Magic For Humans, will headline the event. Learn more!
Unable to join us in Anaheim? There is an online auction with great items that you can bid on from anywhere! Check it out here.
November 11 Southern California Education Day
In partnership with Children’s Hospital Orange County, HA will host a half day in-person educational event featuring presentations from neurosurgeons and medical professionals from across Southern California. This event is free and open to all ages. Please note this is in person and will not be recorded. Join us in SoCal! Information here!
September – November WALK to End Hydrocephalus
The WALK to End Hydrocephalus season is still going on! We have over 40 WALK celebrations around the country. This is a great way to meet other individuals and families living with hydrocephalus. To find the WALK near you, visit our WALK page.
We’re here to keep you updated on the issues facing our community. JOIN OUR ADVOCACY EFFORTS HERE!