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.
7/3/25 Update
From the Epilepsy Foundation:
On July 3, the House of Representatives passed H.R. 1, the budget reconciliation package, by a vote of 218-214. The legislation is expected to be signed into law by the President. The cuts and changes to Medicaid included in the reconciliation package, include but are not limited to: work reporting requirements, increased eligibility checks, cost-sharing requirements, and limits on provider taxes that fund home- and community-based services. As of June 28, the Congressional Budget Office has estimated that this legislation will result in at least 11.8 million more people losing their health insurance by 2034.
With almost 40% of people living with active epilepsy between 18-64 years receiving coverage through Medicaid, as well as many children with epilepsy, this bill will impede the accessibility and affordability of healthcare and critical long-term services and supports. The Epilepsy Foundation will continue to engage and advocate for access to affordable, comprehensive healthcare coverage for the entire epilepsy community. They will be communicating about the timeline for implementation of the provisions of this legislation, to ensure that the epilepsy community is aware of key dates and any opportunities for further engagement.
7/1/25 Update
From the Epilepsy Foundation:
Even if you have already taken action, we ask that you call or email this new message to your U.S. Representative as well. In late May, the U.S. House of Representatives passed a budget reconciliation package that includes devastating changes to Medicaid by instituting work requirements (called community engagement requirements in the bill), increasing cost-sharing, increasing the frequency of eligibility checks, as well as limiting state provider taxes. As of June 28, the Congressional Budget Office (CBO) has estimated that reconciliation would increase the number of people without health insurance in 2034 by 11.8 million.
Medicaid serves as a vital lifeline for over 70 million Americans. In fact, people with epilepsy are more likely to be insured under Medicaid compared to those without epilepsy. Medicaid is how they get their anti-seizure medications, home- and community-based services, and other vital health care services. Almost 40% of people living with active epilepsy between 18–64 years old receive coverage through Medicaid. Almost one in five children and youths have special health care needs, including about 4% of children with epilepsy and seizure disorders. More than one-third of children and youths with special health care needs are covered by Medicaid. Right now is a critical moment for action, and we must continue to elevate the voice of the epilepsy community to advocate to stop the Medicaid provisions that will lead to significant coverage losses. The legislation is now on its way back to the U.S. House of Representatives, which will act quickly with the deadline of passing the final bill and having the President sign it into law before July 4th. Please call and message your U.S. Representative TODAY to vote NO on reconciliation and any cuts to Medicaid! |
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6/27/25 Update
From the Epilepsy Foundation:
Update on Budget Reconciliation and Medicaid
On May 22, the U.S. House of Representatives passed a budget reconciliation package that included devastating changes to Medicaid such as instituting work reporting requirements (called community engagement requirements in the bill), increasing cost-sharing, increasing the frequency of eligibility checks, and limiting states’ use of provider taxes that help fund important services like home and community-based services (HCBS). On June 24, the Congressional Budget Office estimated that, as a result of the Medicaid provisions in the House budget reconciliation bill, the number of people without health insurance would increase by 7.8 million by 2034. The bill also unfortunately included provisions that would increase costs and decrease enrollment in the Affordable Care Act (ACA) marketplaces, which would further increase the number of uninsured.
The Senate Finance Committee recently released its budget reconciliation bill. The proposal includes many of the same harmful provisions as the House bill, but some of the provisions go even further, including, for example, by only exempting parents of children 14 years of age and younger from work reporting requirements (rather than all parents). The Senate bill also unfortunately does not include a provision that was in the House bill that many rare disease groups support because it would streamline enrollment for out-of-state Medicaid providers so that children covered by Medicaid or the Children’s Health Insurance Program (CHIP) could receive care in another state. For more information on the differences between the House and Senate bills, please see the KFF tracker (the Senate is currently debating the bill so these provisions could still change).
Please Take Action Today to Help Protect Medicaid
Budget reconciliation is moving quickly in the Senate and could make its way back to the House soon, given that Congress is hoping to pass the package and have the President sign it into law by July 4. Please take the opportunity TODAY to urge Congress to protect Medicaid by opposing ANY cuts! | Take action |
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.
