Hydrocephalus Association Congressional Briefing on Capitol Hill
The Hydrocephalus Association recently partnered with the Defense Health Research Consortium (DHRC) to host a research-centered Congressional Briefing on Capitol Hill. 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), showcasing hydrocephalus to demonstrate the life-changing impact of the funding.
The CDMRP, which is under the Department of Defense, 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 and it has been a critical source of funding. Hydrocephalus research received $15.3 million during the Fiscal Year (FY) 2022 grant process and $11.7 million during the FY 2023 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 in FY 2025. The topline funding number of the CDMRP ($1.651 billion) has not changed since 2021, leaving many scientists unfunded. In 2023, only 4 out of the 12 hydrocephalus research proposals submitted to the PRMRP review board were chosen to receive funding.
Diana Gray, HA’s President and CEO, opened the briefing with an overview of hydrocephalus and the number of individuals impacted in the U.S. Natasha Buchanan, a Navy spouse and mom to Zander, 6, who has hydrocephalus, personalized the condition for the audience by sharing her family’s journey from diagnosis to today, highlighting the unique challenges faced by military families with children who have complex medical conditions.
With the stage set regarding the challenges of treating and living with hydrocephalus, the briefing turned to the incredible success of CDMRP-funded research. Mark Vieth, lead of the Defense Health Research Consortium (DHRC), provided the historical context of the program and how it differentiates itself from the National Institutes of Health (NIH). He also provided the challenges associated with the program’s lack of funding increases and its impact on the research workforce in the United States.
Dr. David Limbrick, a CDMRP-grantee and Chair of the Virginia Commonwealth University (VCU) Department of Neurosurgery, spoke on the evolution of hydrocephalus research over the last 20 years and how the infusion of CDMRP funds has allowed for the discovery of potential cellular and genetic targets for drug therapies and the development of two new devices to treat hydrocephalus. The two scientists leading the device development joined Dr. Limbrick for an open discussion on the importance of the CDMRP funding – namely that without it, it might have taken much more time to develop and bring their impactful technology to market, as overall funding from private investors for medical device companies experienced a dramatic slowdown in 2023: an >50% decrease from the sector’s peak in 2021. Sascha Lee, CEO of Senseer Health, shared how the grant is helping finalize an internal monitor built on a proprietary microsensor that is connected in-line with commercial shunts, enabling doctors and patients to wirelessly track shunt status, based on CSF flow rate through the device. Lora Allemeier, CEO of Cerulean Scientific, hopes to have a new shunt to market by the end of 2025 that will use a material that prevents the adherence of cells on the tubing in the brain, ultimately resulting in fewer shunt revisions. The funding is allowing Cerulean Scientific to complete product testing and move their device through the final process with the FDA.
These briefings play a crucial role in filling knowledge gaps for staff on Capitol Hill, many of whom are new to the Hill due to high turnover and who are managing multiple topic areas. We are grateful for the support of John McDonogh, Legislative Director for Congressman Chris Smith (R-NJ) and Afton Cissell, Legislative Director for Congressman Lloyd Doggett (D-TX), the two chairs of the Congressional Pediatric and Adult Hydrocephalus Caucus, for their support of this educational event.