The 119th Congress is in full swing. Republican leadership is zoned in on crafting a large legislative package that includes key priorities around tax, immigration, and budgetary issues. The package will likely go through a process called reconciliation, which allows certain budget-related bills to bypass the 60-vote filibuster in the Senate. Instead, reconciliation only requires a simple majority (51 votes) for passage. In addition, there are talks on the inclusion of a healthcare package. HA will continue to monitor the discussions while negotiations are unfolding.<\/span><\/p>\n Among other things, the federal government is set to run out of funding on March 14. While Republicans control both the House and Senate, they will need at least 60 votes in the Senate to pass a 2025 funding package. This means they must negotiate with Democrats to secure enough support to advance the bill through Congress. Additionally, the funding bill must raise the national debt limit to prevent a default on the national debt. To read more about the debt limit, click <\/span>HERE<\/span><\/a>.<\/span><\/p>\n The Trump administration recently issued directives significantly impacting federal health agencies’ operations. An executive order mandated a temporary halt on external communications from agencies within the Department of Health and Human Services (HHS), including the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), and the National Institutes of Health (NIH). This pause affected public health guidance, press releases, announcements, and scientific meetings, including reviews of current NIH grants and submitted study proposals, impacting hydrocephalus research activities. Exceptions were made for matters critical to preserving public health.<\/span><\/p>\n Concurrently, the Office of Management and Budget (OMB) issued a memorandum (M-25-13) on January 27, 2025, instructing federal agencies to “temporarily pause all activities related to obligation or disbursement of all federal financial assistance.” This directive aimed to review programs and align funding with the administration’s priorities, explicitly exempting Medicare and Social Security benefits. However, the memo led to widespread confusion, with concerns about its legality and potential impacts on various programs.\u00a0<\/span><\/p>\n Following legal challenges, a federal judge temporarily blocked the funding freeze, leading the OMB to rescind the memo. Despite this, the administration indicated that efforts to align federal spending with its priorities would continue. These developments have caused significant uncertainty. HA will continue to closely monitor the situation, particularly as it relates to research and programs that directly impact our community.<\/span><\/p>\n The Hydrocephalus Association\u2019s statement on the recent events is provided below.<\/span><\/p>\n Hydrocephalus Association Expresses Concern Over Executive Orders That Could Affect Hydrocephalus Research<\/span><\/a><\/p>\n Last Friday, over 50 volunteer leaders from the Hydrocephalus community took to Capitol Hill to meet with their elected officials\u2019 offices in Washington, DC. WALK to End Hydrocephalus Chairs and HA Community Network Leaders from across the country educated congressional staff on the challenges faced by the hydrocephalus community. Attendees also outlined key legislative priorities, including federal Medicaid funding, the impact of NIH and CDMRP research, and the Congressional Pediatric and Adult Hydrocephalus Caucus. The event\u2019s success lays a strong foundation for hydrocephalus advocacy in 2025.\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/span><\/p>\n The Hydrocephalus Association joined the EveryLife Foundation for Rare Diseases to highlight key rare disease issues for the incoming Trump Administration. The letter expands on the importance of supporting rare disease innovation and research through federal incentives like the Rare Disease Priority Review Voucher Program and the Orphan Drug Tax Credit. It also emphasizes the crucial role of the new Rare Disease Innovation Hub at the Food and Drug Administration (FDA), among other topics.<\/span><\/p>\n To view the letter, click <\/span>HERE<\/span><\/a>!<\/span><\/p>\n Medicaid is a crucial program for the hydrocephalus community. Approximately one-third of patients requiring annual hospital shunt admissions rely on Medicaid for healthcare coverage. It ensures access to essential care, including recurrent brain surgeries, follow-up visits, and treatment for comorbid conditions like epilepsy. However, recent statements from Congressional Republicans have raised concerns about potential federal Medicaid funding cuts, which could severely impact hydrocephalus patients’ access to critical care.<\/span><\/p>\n To emphasize the importance of this coverage to Congress, the Hydrocephalus Association signed a Congressional letter circulated by Families USA highlighting the negative patient impact of possible federal Medicaid funding cuts by Congress.<\/span><\/p>\n The Hydrocephalus Association partnered with the National MS Society to lay out patient organization priorities around pharmacy benefit manager (PBM) regulation in the 119th Congress. PBMs act as middlemen between health insurance providers and drug manufacturers, often influencing medication prices and access. The letter outlines key reforms needed to make prescription drugs more affordable for people with chronic conditions like hydrocephalus and multiple sclerosis. To read the letter, click <\/span>HERE<\/span><\/a>.<\/span><\/p>\n Be sure to visit our awesome <\/span>Advocacy Center<\/span><\/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 March 5th at 7:00 pm Eastern.<\/strong> If you haven\u2019t signed up yet, <\/span>click here to register.<\/span><\/a><\/p>\n Stay informed and make your voice heard \u2014 get advocacy updates straight to your inbox. Sign up here<\/a>.<\/strong><\/p>\n\r\n
\nFederal Freeze to Health Agencies:<\/b><\/h4>\n
\nHydrocephalus Community Leaders Take to the Hill:<\/b><\/h4>\n
HA PARTNERSHIP EFFORTS\u00a0<\/b><\/h3>\n
Setting Rare Disease Priorities for the Trump Administration:<\/b><\/h4>\n
Protecting Medicaid Access for Patients:<\/b><\/h4>\n
PBM Patient Priorities this Congress:<\/b><\/h4>\n
\nOPPORTUNITIES TO ENGAGE<\/b><\/h2>\n
Wednesday, March 5 <\/b>Hydrocephalus Advocacy Update<\/b><\/h4>\n
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