As we start 2025, we want to provide updates on our advocacy strategy and collaboration. With headlines about what is happening in DC abounding, this update is meant to focus on health policy relevant to our community. ASF and FAST are committed to tracking developments and keep you informed as updates become available. In addition, we want to ensure the AS community understands the ways to actively participate in these efforts throughout 2025. Together, we can make a difference.
Updates on our collaborative advocacy efforts
What’s the status of the AS-specific requests to Congress for FY25?
After a dramatic week of ups and downs at the end of December, the 118th Congress came to a close with the funding of the federal government through March 14, 2025. Essentially, Congress has “kicked the can down the road” on funding all of fiscal year (FY) 2025 – passing what is called a “continuing resolution” – this keeps the government funded until mid-March 2025 but does not include the entire year, nor does it include the many priorities members requested for FY25, including our AS-specific requests.
As we reported late last year, we succeeded in getting our FY25 priorities in both the House and Senate appropriations report drafts. Now, all we can do is wait until those appropriations bills are passed into law (we hope this to happen by the new March deadline).
Legislative priorities we supported in the 118th Congress not included
There was a lot of hope regarding the inclusion of healthcare legislative priorities that would benefit the Angelman syndrome community in the initial negotiated federal funding deal in December 2024. These policies included:
The Accelerating Kids’ Access to Care Act, which would streamline Medicaid out of state provider enrollment, reducing administrative delays in care for kids
The Give Kids a Chance Act, which would extend an incentive for the development of drugs for rare pediatric populations and further encourage pediatric drug research and development (Also known as Rare Pediatric Disease Priority Review Voucher Program or PRV)
The extension of telehealth services in the Medicare program
The reauthorization of the Older Americans Act and provisions to support family caregivers.
Unfortunately, Congress ultimately did not pass the original deal with all of these provisions and instead passed a much narrower bill focused on funding the government through March. It is possible that some of the above policies would be addressed on a standalone basis early in the new Congress, which we would support. If not, the next chance for a health care package will likely be in the next bill to continue government funding before March 14.
Other legislation we support that will need to be reintroduced in 2025 include:
Credit for Caring Act: This would establish a non-refundable federal tax credit of up to $5,000 for eligible working family caregivers to alleviate the financial burden of caregiving.
Medicaid Value-Based Payments for Patients (MVP) Act: Clarifies Value-Based Payment Models for manufacturers and prevents distortion of Medicaid prices.
Alleviating Barriers for Caregivers (ABC) Act: This would require CMS and the Social Security Administration to review and simplify the processes, procedures, forms, and communications for family caregivers enrolling their loved ones into federal programs like Medicaid, CHIP, and Social Security.
HCBS Relief Act: This would increase federal funding for Medicaid home- and community-based services (HCBS) and requirement improvements to those benefits.\
BENEFIT Act: This bill would require FDA to consider relevant patient experience data in the drug development process.
What this Means for the Angelman Syndrome Community
We will continue to advocate for the abovementioned provisions that have strong bipartisan support and were almost passed into law. Some of the provisions first included in the package could be passed early in the new year or in the next round of significant legislation ahead of the March deadline. We will join other patient advocacy organizations in these efforts as we have been.
How You Can Get Involved in 2025
2025 Angelman Syndrome Congressional Advocacy Day – March 4-5, 2025
It's crucial to keep Angelman syndrome at the forefront of legislators' minds as they make policy decisions that affect families' lives. Additionally, there are more than 60 new members of Congress and more than 10 new Senators who need to be informed about rare diseases and the needs of our community.
Therefore, we invite and encourage Angelman syndrome advocates to join us in Washington DC March 4-5, 2025.
If you're new to advocacy, there's no reason to feel intimidated! FAST and ASF will offer a comprehensive training session to ensure you are well-prepared for your meetings with legislators.
To learn more or register today.
Thank you for your outstanding efforts in 2024. We look forward to seeing many of you in Washington in March!
Angelman Syndrome EL-PFDD Meeting – January 29, 2025
We hope many of you have seen our announcements about the upcoming Angelman Syndrome Externally Led Patient-Focused Drug Development (EL-PFDD) Meeting scheduled for January 29, 2025. This will be a virtual meeting hosted by ASF and FAST with the FDA at the table, offering us a unique opportunity to share your lived experiences with AS with the agency staff, therapy developers, and other key decision-makers in our community.
Please make sure to RSVP for the meeting
Leading up to the meeting, we will be asking for early comment submissions so please watch your inbox and social media throughout January and submit your comments!
Request a State Proclamation for IAD 2025
Getting a proclamation issued by your state or local government can be a powerful way to raise awareness about Angelman syndrome and demonstrate community support.
A perfect day to do this is International Angelman Day, which is February 15th each year. If you are interested in submitting a proclamation, please email kely@angelman.org for next steps and so efforts are not duplicated in your state!
To learn more visit: https://angelmanadvocates.org/state-proclamations