Action Alert from RDLA & STXBP1 Foundation
EveryLife Foundation Asks Advocates to Urge Their Senators to Reject Medicaid Policies That Will Harm the Rare Disease Community
The rare disease community needs our help! If you have not already heard, the President’s budget reconciliation legislation H.R.1 - One Big Beautiful Bill Act will cut Medicaid by $715 billion over the next 10 years. This will have devastating effects on the rare disease community.
What can we do? Tell our Senators NOT to support this bill! It’s easy … just follow these 4 steps:
Click here: https://everylifefoundation.org/rare-advocates/take-action/
Click on “EveryLife Foundation Asks Advocates to Urge Their Senators to Reject Medicaid Policies That Will Harm the Rare Disease Community”
Enter your information in the five fields: first name, last name, address, email, phone
Clicking “Sign Up” will send the letter directly to your local Senators
When? Right now. The Senate is expected to pass the bill before July 1 and may even bypass the committee process to rush it through.
What else can we do? Call your Senators. Remember – they work for YOU!!
Tell them to vote NO on this bill and that cutting Medicaid funding to our vulnerable population is intolerable!
More Information:
This bill was passed by the House on May 22, 2025. The next step is a vote by the Senate – date TBD. Per below, the bill will cut $715 billion from Medicaid which is utilized by many rare disease families for diagnoses, treatments, durable medical equipment, home healthcare, and caregiver services for highly complex, chronic health conditions. Our community is too vulnerable to absorb these cuts.
What’s in the Bill? The bill is over 1,000 pages in length. To read the bill and to track its progression, please see: https://www.govtrack.us/congress/bills/119/hr1
Additionally, please see this summary created by the Epilepsy Foundation to better understand some of the provisions that impact the STXBP1 and rare disease communities.
Please act now! We do not know when the Senate will vote on this bill, but we can expect that it will be done quickly. Please tell our Senators NOT to support this bill!
After sending the letter, please call your state’s Senators and tell them to vote NO! We are powerful in numbers.
Additional Questions – please email Cristina.Brennan@stxbp1disorders.org and she will try to get additional information.
