Tell Congress to Preserve and Protect Medicaid!

In the United States, over 70 million low-income individuals, people with disabilities, seniors, families, and pregnant women rely on Medicaid to access health care coverage and long-term services and supports. Medicaid serves as a vital lifeline for millions of working 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 youth have special health care needs, including about 4% of children with epilepsy and seizure disorders. More than one-third of children and youth with special health care needs are covered by Medicaid.

Recently, Congress has been working on budget reconciliation legislation that includes Medicaid provisions, such as work requirements, cost sharing, and more frequent eligibility checks for Medicaid beneficiaries, as well as changes to Medicaid provider taxes.

Early in the morning on Thursday, May 22, the U.S. House of Representatives passed the budget reconciliation package. The bill that passed the House included some changes, including moving up the date of Medicaid work reporting requirements (called community engagement requirements in the bill) from January 1, 2029, to no later than December 31, 2026. The Congressional Budget Office (CBO) had previously estimated that 7.6 million people could become uninsured as a result of the work reporting requirements and other healthcare provisions of the budget reconciliation bill, and the change in the effective date could result in even more people with epilepsy and their caregivers having to meet work reporting requirements or lose Medicaid coverage. These coverage losses would be devastating for the epilepsy community.

The legislation will now move to the U.S. Senate for consideration, where further changes are expected. We must continue to elevate the voice of the epilepsy community and advocate to stop the Medicaid provisions that will lead to significant coverage losses. Tell your Senators to protect Medicaid by opposing any cuts!

This is a new letter with updated requests to Congress. Even if you have previously taken action, we ask that you send this alert as well.

To take action, enter your information to be matched to your elected officials. The first time you take action in VoterVoice, the system will send a verification code to your email. This is to ensure your personal information is safe and secure and can only be modified by you. After the first time, you should rarely encounter verification codes. You will then see the message and be able to add your own story.

We strongly encourage you to personalize your messages to your legislators by telling them how important this issue is to you as a member of the epilepsy community, especially if you or your loved ones receive health coverage through Medicaid. More personalized comments will have a significantly greater impact.