DSF Legislative Advocacy Efforts
We need your help to advocate for critical issues and policies that directly impact the Dravet syndrome patient community and others affected by rare diseases. By lending your voice, you can help drive meaningful change, influence decision-makers, and improve the lives of those living with these conditions.
Below are current legislative initiatives and calls to action. Your engagement—whether through contacting legislators, spreading awareness, or participating in advocacy events—can make a real difference. Together, we can push for policies that enhance research, improve access to treatments, and support families navigating the challenges of rare diseases like Dravet syndrome.
Our recent blog post details other ways you can receive accurate, nonpartisan information on topics that may directly affect you and your family.
Stay informed, take action, and be a part of the movement for change! #AdvocateforDravet
URGENT: What You Need to Know & Where to Take Action
DSF is monitoring legislative changes to stay ahead of anything that could impact our patient community and to keep our stakeholders informed of these potential changes. When there is an opportunity to take action, it is listed below, under the “Take Action Today” table.
Protect Medicaid Funding
5/22/25 update:
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 |
5/21/25 update from Epilepsy Foundation:
The House Rules committee is still discussing the bill, with the plan to vote on it by the end of the week. Please contact your House Representative NOW to share your story about how important Medicaid is to your family! | Take action |
5/19/25 update from 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 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.
Medicaid 101: What You Need to Know
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.
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.
http://bit.ly/EFAPM
Proposed HHS Budget Reflects Significant Restructuring and Reductions
4/22/25: The Trump administration’s preliminary FY26 budget proposal would reduce the Department of Health and Human Services’ discretionary spending by approximately one-third, from $121 billion to $80 billion, with proposed cuts affecting agencies such as NIH, CDC, and rural health programs. The proposal also outlines agency consolidations and program restructuring, but it remains to be seen how much will be adopted by Congress. For more information, go here.
Information provided by the American Journal of Manged Care (AJMC). AJMC is an independent, peer-reviewed publication dedicated to disseminating clinical information to managed care physicians, clinical decision-makers, and other health care professionals.
Save Research Funding at NIH and NSF
Overview (provided by 5calls.org)
On February 7, the Trump administration moved to cut billions of dollars in funding from the National Institutes of Health (NIH) and National Science Foundation (NSF) by placing an immediate cap on “indirect costs”. Indirect costs include infrastructure, facility maintenance, and staff salaries. These funds ensure that research can happen. This new policy will cause an immediate and massive funding shortfall at research institutions nationwide, forcing layoffs and jeopardizing critical scientific research. This change undermines years of financial planning at universities and research institutions, creating a devastating budget crisis overnight.
NIH and NSF funding doesn’t just support scientific progress, it also helps fuel the U.S. economy. Every dollar of NIH funding generates $2.46 of economic activity. NIH-funded research has led to breakthroughs in treatments for cancer, diabetes, autoimmune disorders, and more; NSF is a critical funder for every field of science, particularly computational and cybersecurity research. Cutting indirect costs will mean fewer jobs, fewer discoveries, and a weakened global standing in science and innovation. In 2023 alone, NIH funding supported over 400,000 jobs and generated nearly $93 billion in economic activity. This decision jeopardizes thousands of livelihoods and our nation’s economy.
There are serious questions about whether this decision is even within the administration’s authority. Current policy suggests changes like this must go through Congress.
To learn more about funding for Dravet syndrome research, check out this blog from DSF Scientific Director, Veronica Hood.
2/17/25 Update
From RDLA
Recently, the EveryLife Foundation released a statement in response to President Trump’s signing of an Executive Order to cut funding from the National Institutes of Health for research programs at universities and medical systems. The Executive Order would cut indirect cost rates to 15% from an average of more than 27%. The indirect cost rates’ purpose is to cover overhead costs that research institutions must account for to support their research. You can read the statement here.
2/13/25 Update
From Erica Cischke, MPH, Vice President, Government Affairs – Alliance for Regenerative Medicine
Yesterday the same federal judge issued a new TRO blocking the 15% NIH indirect cost rate from taking effect nationwide, in response to a separate lawsuit brought by AAMC and other national organizations against NIH.
A Federal District Court hearing has been set for February 21, 2025.
Both lawsuits as well as Senator Murray, Vice Chair of the Senate Appropriations Committee contend that the February 7th NIH supplemental guidance is illegal because it directly contravened legislative language, which has been in effect since 2018, blocking the Executive Branch from changing NIH indirect cost rates. As such, the issue of NIH indirect costs will likely become a matter for legislative discussion that could impact FY2025 appropriations bills.
2/11/25 Update
From Erica Cischke, MPH, Vice President, Government Affairs – Alliance for Regenerative Medicine
Multiple state attorneys general are suing the NIH to block the indirect costs rate change. Here is the complaint filed in the US District Court in Massachusetts today. STAT news reported on the lawsuit and did a round-up of reactions to the NIH policy change here. The group United for Medical Research has some useful background information about indirect medical costs on their website.
Several organizations have released statements:
- Association of American Medical Colleges
- American Council on Education
- Association of Public Land Grant Universities
Senator Murray, Vice Chair of the Senate Appropriations Committee issued a statement on Friday in response to the NIH guidance calling the change to NIH indirect rates “illegal and arbitrary”. Since the announcement, some other members of Congress have begun voicing their concerns. It is unclear whether this issue could impact the looming Senate floor vote to confirm Robert F. Kennedy Jr. for Secretary of HHS.
Ensure Out of State Medicaid Coverage: Accelerating Kids Access to Care Act
This bill would make it easier for patients to see providers out of state because it would set up a framework for doctors to more easily accept Medicaid plans from other states. For our community, that means potentially not having to pay out of pocket to see a Dravet specialist in a different state.
This legislation has broad bi-partisan support, but did not make it through the legislative process in 2024. It has now been reintroduced for 2025-2026 session as HR 1509 / S 752.
We will share an action alert soon to ask legislators to co-sign/support this legislation, but feel free to contact them directly to tell them what this means for your family.
Take Action Today!
Request a Proclamation for Dravet Syndrome Awareness Day
Ask Your Legislators Join the Congressional Epilepsy Caucus
A caucus is a group of bi-partisan legislators that join together to support a specific cause. This newly formed Epilepsy Caucus will help to promote legislation that will benefit the epilepsy community, so we need to get as many members as possible to join.
Click below to check to see if your legislators are already members of the caucus. If not, you can use the form to send a message to ask them to join!
Ask Your Legislators to Support National Plan for the Epilepsies to Improve the Well-Being of People with Epilepsy and Their Families.
There is a new effort underway to create a National Plan for the Epilepsies. This legislation, if passed, would direct the federal government to develop a National Plan for Epilepsy to prevent, diagnose, treat, and cure the epilepsies and improve the well-being of people with epilepsy and their families. We support anything that would bring more attention, research and resources to the epilepsy community.
Click the button to contact your members of Congress to ask them to co-sponsor this important legislation (H.R. 1189 / S. 494).
Tell Congress to Protect the Department of Education
The Administration wants to close the U.S. Department of Education, and Congress needs to take action. Without an appropriate education, students with disabilities face higher rates of poverty, unemployment, poor health, and social isolation.
- The Department of Education is crucial for students with disabilities.
- It holds states accountable when they’re not meeting the needs of students with disabilities.
- It funds critical programs to increase the supply of special education teachers.
- It provides parents with information on how to navigate the education system for their child with a disability.
Act now and tell Congress that the Department of Education must be protected.
*Thank you to The ARC for compiling this information.
Support Drug Development for Rare Diseases: Give Kids a Chance Act
This bill would reauthorize an existing program which allows drug companies to receive a Priority Review Voucher (PRV) in order to have an expedited approval process for a treatment that would benefit pediatric rare disease patients. This is important to our community because we want the companies working on new treatments to have every tool available to get those treatments approved as quickly as possible for our community.
This legislation has broad bi-partisan support, but did not make it through the legislative process in 2024, expiring on December 20, 2024, despite a five-year reauthorization passing the House with bipartisan support.
On February 12, 2025, the Give Kids a Chance Act, H.R. 1262, was reintroduced by Representatives McCaul (TX) and Dingell (MI). The Give Kids a Chance Act would accelerate pediatric cancer treatments and expand access to life-saving therapies for children battling rare diseases as well as reauthorize the Rare Pediatric Review program. The Creating Hope Act of 2012 established the PRV Program to help expedite the development and promotion of drugs for diseases that disproportionately affect children. Since then, the PRV Program has incentivized the development of 58 new treatment options.
DSF Involvement
Rare Disease Week on Capitol Hill - February 24-26
If you are not even sure where to begin and want to learn more about how to advocate for our community, check out our most recent advocacy webinar below.
Our Partners in Advocacy
Our Legislative Advocacy Program is supported by unrestricted grants from:
