Get the Hydrocephalus Scoop on Capitol Hill for March 2024
Hydrocephalus Association Advocacy Update
Congress FINALLY passed government funding for 2024. It took a while, it felt like forever…but it’s done. The budget included the Defense Appropriations bill and the Labor, HHS, Education Appropriations (LHHS) bill. You may be thinking, “What does this mean?” Well, the passing of this means that the Congressionally Directed Medical Research Program (CDMRP) can now begin accepting applications for their 2024 grant process. It also means that the NIH can move forward with new research grants and projects. Although FY 2024 funding for the two research avenues, the CDMRP was cut by approximately $50 million from $1.56 billion to $1.51 billion. The NIH budget was also cut by 0.8%. This is very concerning given current inflation numbers and other cost challenges in the research field.
It’s been a long road to get these appropriation bills passed. However, the work does not stop here. The FY 2025 appropriations process is currently underway and we are working with our coalition partners to lobby Congress on our top research and health priorities. To help us achieve these goals, you can fill out our new action alerts that urge Congress to increase funding for the CDMRP and NIH for 2025!
FY25 CDMRP Funding Action Alert
HA’s hosts its first Congressional Briefing since 2019!
The Hydrocephalus Association recently partnered with the Defense Health Research Consortium (DHRC) to host a research-centered Congressional Briefing on Capitol Hill. Briefings serve to educate congressional staffers about important policy issues. The briefing, which took place on Friday, March 15th, brought in a variety of speakers to educate congressional staffers on the importance of the Congressionally Directed Medical Research Program (CDMRP), spotlighting the success of recent hydrocephalus funding as an example of the CDMRP’s impact.
For a little background, the CDMRP is a federal research program within the Department of Defense that funds high-impact, high-risk, and high-gain projects with the goal of improving patient care and treatment. Hydrocephalus has been eligible within the program since 2015. Hydrocephalus research received $15.3 million during the FY 2022 grant process and $11.7 million during FY 2023’s grant cycle. Part of this funding went into the creation of the first Hydrocephalus Research Center at the Indiana University–Purdue University Indianapolis (IUPUI) School of Science and funded the first human clinical trial of a drug combination to protect the brain after a brain bleed and potentially prevent the development of hydrocephalus at Johns Hopkins.
The event underscored the need for increased federal funding for the program for FY 2025. The topline funding number of the CDMRP ($1.651 billion) has not changed since 2021. Much of the proposed science has been left off the table due to this. In 2023, only 4 out of the 12 hydrocephalus research proposals submitted to the PRMRP review board were chosen to receive funding. We are so thankful to our Caucus Co-Chairs, Congressman Smith (NJ-04) and Congressman Doggett (TX-37), whose continued support allows us to host these events and educate congressional staffers on issues important to our condition.
Hydrocephalus Association Takes Action on Capitol Hill
Leading up to the Congressional Briefing, members of HA’s staff and hydrocephalus researchers met with congressional offices to talk about HA’s policy priorities and the importance of increased funding for the Congressionally Directed Medical Research Program (CDMRP) in FY 2025. The schedule included meetings with the offices of Senator Hassan (NH), Senator Kelly (AZ), Senator Capito (WV), Senator Van Hollen (MD), Senator Murray (WA), and Congresswoman McClellan (VA-04). The researchers were able to directly share the science that was funded by the CDMRP in FY 2023. Staffers were especially interested in how new technology funded by the CDMRP could reduce shunt failures and overall spending within the healthcare system. They were also impressed to learn that the CDMRP funding may result in a drug that could prevent the development of hydrocephalus after a brain bleed. The CDMRP is showing real impact, which lends motivation to Senator Murray who puts forth hydrocephalus each year as an eligible condition for funding under the CDMRP. We are so grateful for her steadfast commitment to making a better future for our community. (If you live in Washington State, we encourage you to send her a thank you note through her website or via a phone call.)
Our delegation had an in-person meeting with Senator Maggie Hassan (D-NH). Senator Hassan’s son, Ben, was born with hydrocephalus and cerebral palsy. Her transition to public service was fueled by her motivation to address the gaps in the healthcare systems that were experienced by her family. She was especially interested to hear about the recent technological developments given her personal connection with the condition. She left wearing one of HA’s shunt pins. We are looking forward to working with Senator Hassan and the other offices to address the issues most pressing to the hydrocephalus community!
Hydrocephalus Caucus Welcomes New Members
The Congressional Pediatric and Adult Hydrocephalus Caucus has welcomed 2 new members this month, bringing total membership to 24. The new members were Congressman Marc Veasey (TX-33) and Congressman Gabe Amo (RI-01). Congressman Veasey became our second member from the Dallas-Fort Worth (DFW) area to join the Caucus. Congressman Amo became the first member from Rhode Island to join the Caucus. We want to thank Emily Birtwistle and Nikki Batsford for their hard work. Both met with the district offices of these new members to share their stories with hydrocephalus. This could be YOU! Please respond to this newsletter if you are interested in meeting with the district office of your local Representative to advocate for hydrocephalus.
American Brain Coalition Letter
HA joined others in the patient advocacy space by signing on to two letters by the American Brain Coalition. The first letter encourages Congress to support robust funding for the BRAIN Initiative of at least $740 million in FY 2025. The BRAIN Initiative is a collaborative research initiative within the NIH that supports the development and application of innovative technologies that can create a dynamic understanding of brain function. The pace of brain science is advancing rapidly, and increased funding is necessary to maximize our exploration of the brain, advance our understanding of the brain, and identify cures and treatments.
The second letter encourages Congress to provide at least $5 million in FY 2025 for the Neurology Drug Program. This program works to foster neurology device assessment, development, and innovation within the FDA. The program helps the agency better understand brain-centered medical devices like the shunt in the premarket and postmarket stages.
Telehealth Updates
HA signed onto a letter circulated by the Alliance for Connected Care that urges Congressional leaders to permanently extend the telehealth provisions that are set to expire on December 31, 2024. Without the extension, patients will lose access to telehealth services. Some of the current telehealth provisions on the line include the ability for health centers and rural health clinics to provide telehealth services, in-person visit requirements, and the ability for Medicare patients to receive virtual care from their home.
May 1 Hydrocephalus Advocacy Update
Want to deep dive into policy issues? Join us for our next Advocacy Update on May 1, 2024, at 7 pm Eastern. If you haven’t signed up yet, click here to register.
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!
July 25-27 18th National Conference on Hydrocephalus – HA CONNECT
HA CONNECT, the world’s largest conference on Hydrocephalus, takes place this July in Tampa, Florida. Come get insights into living our best lives with hydrocephalus through interactive sessions, expert speakers, evening events & more! Registration is open and early registration rates are in effect for another couple of weeks. Visit hydrocephalusconference.org to learn more.