Congress is Considering Major Medicaid Changes
Congress is currently navigating a unique legislative process known as budget reconciliation. The first part of the process, a budget resolution that included instructions requiring a $880 billion cut from the committee that oversees Medicare, Medicaid, and other health programs, was completed in February. Congress still has work to do, but achieving the required spending cuts will be challenging without significantly changing Medicaid funding and eligibility requirements. If you’re interested in learning more about Medicaid and how it works, you can check out this Medicaid 101 guide at this link.
Through traditional eligibility routes and waiver programs that enable coverage for children’s complex health needs, Medicaid is a critical safeguard for our rare disease community. Now more than ever, Congress should understand why Medicaid matters to rare disease patients and families.
5/22/25 Update
From the Everylife Foundation:
The House passed the budget reconciliation bill which includes deep Medicaid cuts. Next, the Senate will begin their process. Please contact your two US Senators! | Take action |
5/19/25 Update
From the EveryLife Foundation:
The House Energy & Commerce Committee advanced its portion of the FY25 budget reconciliation bill after a 26-hour markup. Key provisions include deep cuts to Medicaid, with the CBO projecting over 8 million individuals could lose coverage. The bill passed the House Budget Committee Sunday night after initially failing to pass on Friday. Currently, the House Rules Committee is expected to vote on the bill at 1:00am Wednesday morning, the final Committee vote before the bill goes to the floor. It’s important to remember that nothing is set in stone yet, which makes advocacy more important than ever. The Senate has yet to act, and there’s still no consensus on what should be included in the final version. Read more | Take action | Track Medicaid Provisions
5/18/25 Update
From the EveryLife Foundation:
Rare disease patients often have highly complex, chronic health conditions that can require around-the-clock care. Many of those patients are children, with 70% of rare diseases beginning in childhood. The rare disease community utilizes Medicaid for diagnosis, treatments, medical equipment, home healthcare, and caregiving services. Cuts to Medicaid will impact eligibility pathways, benefits, and overall access to healthcare.
