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<\/p>\nNothing much has happened in Washington, D.C as of recent\u2026we are kidding, so much is happening! As the year heads to an end, Congress and advocates are working to push important legislation across the finish line. The Hydrocephalus Association is partnering with others in the patient and healthcare space to mobilize support for a variety of key priorities.
\nAside from the current legislative efforts, government funding will run out on December 20th. However, do not fear! Congress will likely approve a short term continuing resolution (CR) to fund the government until March. CRs have been a common occurrence recently. This will be the second consecutive year that Congress has failed to pass bipartisan government funding legislation by the end of December.<\/p>\n
A new presidential administration and Congress will have large implications on government and healthcare. Republicans will control the U.S. House, Senate, and White House in the 119th Congress. The first 100 days of a new administration are historical in their role for setting the tone for the remainder of the year.<\/p>\n
Congressman Andre Carson\u2019s Staff Visits the IU Hydrocephalus Research Center<\/b><\/p>\n
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The chief of staff, along with other district staffers, of Congressman Andre Carson (IN-07) recently visited and toured the Hydrocephalus Research Center at Indiana University\u2019s School of Science. Led by head researcher, Dr. Bonnie Blazer Yost, the congressional staff learned about the groundbreaking work taking place at the institute. The creation of the center was a direct result of the Congressionally Directed Medical Research Program (CDMRP), a Department of Defense program that funds high impact, patient-centered research, in 2022.<\/p>\n
Congressman Carson has played an integral part in advancing funding avenues for federal medical research. The tour is a strong step in our ongoing partnership with the Congressman\u2019s office.<\/p>\n
Chairman Chris Smith Holds Congressional Hearing Centering on Global Hydrocephalus Challenges\u00a0<\/b><\/p>\n
The House Foreign Affairs Subcommittee on Global Health, Global Human Rights and International Organizations hosted a hearing on the global challenges facing global brain health. Longtime champion of brain health reform and co-chair of the Congressional Pediatric and Adult Hydrocephalus Caucus, Chris Smith (NJ-04), led the subcommittee hearing and questioning. Among the topics in discussion were the global challenges facing hydrocephalus patients in developing countries and ways international aid programs can better support them.<\/p>\n
Among the speakers testifying at the hearing was Benjamin C. Warf, Chairman Of NeuroKids. The organization has been integral in training physicians to use endoscopic third ventriculostomy (ETV) and choroid plexus cauterization (CPC), an alternative, low cost treatment to shunting, to treat hydrocephalus patients in developing countries. Their work has led over 2000 life-saving brain surgeries for children in the Global South.<\/p>\n
The subcommittee hearing emphasized the importance of international aid programs that support vulnerable patients affected by various brain conditions. To view the full hearing, click HERE<\/a>!<\/p>\n Federal Medical Research Funding\u00a0<\/b><\/p>\n The Hydrocephalus Association has been working to bolster federal research funding avenues through coalition partnerships. HA recently joined others in the research space to endorse a letter from the Ad Hoc Group for Medical Research urging Congress to preserve funding for the National Institutes of Health (NIH).<\/p>\n The NIH has funded a number of high-impact hydrocephalus research grants in 2024. Recent funding centered on uncovering the various causes of hydrocephalus. The 2024 budget for the National Institutes of Health was set at $47.311 billion, a decrease of $368 million, or 0.8%, from FY2023. This was the first cut<\/a> in topline spending since 2013. The Senate Appropriations Committee approved a budget of $48.9 billion increasing funding by over a billion dollars for 2025. The letter underscores the necessity of providing robust funding moving forward. To read the letter, click HERE<\/a>.<\/p>\n Pushing Rare Disease Priorities Across the Finish Line\u00a0<\/b><\/p>\n The Hydrocephalus Association signed on to two letters urging the passage of rare disease legislation before the end of the 118th Congress. The first letter, circulated by the National Organization for Rare Disorders, asks congressional leaders to reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) program. Bipartisan legislation reauthorizing the program passed the full House floor back in September.<\/p>\n The program provides financial vouchers to pharmaceutical companies which incentive them to create new medications and treatments for rare pediatric diseases. Since 2012, the Rare Pediatric Disease PRV has brought new therapies to the market impacting 39 different rare diseases.<\/p>\n To view the letter, click HERE<\/a>!<\/p>\n The second letter<\/a>, circulated by the Alliance for Regenerative Medicine, emphasizes the importance of the Rare Pediatric Disease Priority Review Voucher along with the Accelerating Kids\u2019 Access to Care Act (S. 2372 \/ H.R.4758)<\/a>. The Accelerating Kids\u2019 Access to Care Act would streamline the Medicaid screening and enrollment process for out of state providers. A smoother process would help children on Medicaid access specialists located outside of their state in a timely manner. The bill, which recently passed the House, must now pass through the Senate to be signed into law.<\/p>\n To urge your Senator to pass this crucial Rare Disease legislation, click HERE<\/a>!<\/p>\n Defense Medical Research Funding\u00a0<\/b><\/p>\n Lastly, the Hydrocephalus Association has partnered with the Defense Health Research Consortium, to urge Congress to pass the Defense Appropriations by the end of 2024. The bill provides 2025 funding for the Congressionally Directed Medical Research Program (CDMRP), which supports many forms of hydrocephalus research. Failure to pass funding in a timely manner can negatively affect the lengthy2025 grant review process. To view the letter, click HERE<\/a!<\/a><\/p>\n NPPACT –\u00a0<\/b>Policy Brief: Ensuring Successful Transitions to Adult Care for Young Adults with Special Healthcare Needs<\/b><\/a><\/p>\n What Hydrocephalus Patients Should Know for Medicare Open Enrollment<\/b><\/a><\/p>\n Traumatic Brain Injuries Delegated as Chronic Condition by Medicare\u00a0<\/b><\/a><\/p>\n Wednesday, January 8 <\/b>Hydrocephalus Advocacy Update<\/b><\/p>\n Be sure to visit our awesome Advocacy Center<\/a> 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 January 8th at 7:00 pm Eastern. If you haven\u2019t signed up yet, click here to register.<\/a><\/p>\n\r\n
\nPARTNERING WITHIN THE HEALTH SPACE\u00a0\u00a0<\/b><\/h3>\n
\nNOVEMBER ADVOCACY ARTICLES\u00a0\u00a0<\/b><\/h3>\n
OPPORTUNITIES TO ENGAGE<\/b><\/h3>\n
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