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.
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.
Protect Medicaid Funding
Medicaid is a vital program for many individuals with Dravet syndrome and other intellectual and developmental disabilities. Both children and adults with Dravet syndrome depend on Medicaid for essential healthcare, treatments, and other critical services that support their quality of life. Without it, vital care will vanish. If we don’t take action now, children and adults with disabilities could lose access to these services—some as early as April.
Click below to access the Medicare Rights Center website to contact your legislators to share why Medicaid is important for your loved one and everyone with epilepsy. This is an urgent request as we expect Congress to vote on the updated budget very soon!
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!
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.
Help Stop the Attack on Section 504
4/11/25 update: On April 11, 2025, the parties filed another Joint Status Report with the court. The report makes a big change to the states’ claims about Section 504. It says: Plaintiffs further clarify that they have no intention to seek any relief from this Court on Count 3 (Section 504 is Unconstitutional) of their Complaint [or] their Demand for Relief at d–e [declare Section 504 unconstitutional and block HHS from enforcing Section 504]. And nothing in Plaintiffs’ Complaint seeks to … prevent the Federal Government from allocating spending or applying the provisions of the Rehabilitation Act to any recipients of such funds.
This means the 17 states have abandoned their constitutional challenge to Section 504. This means that the district court in Texas will not rule on whether or not Section 504 is constitutional. The question of whether Section 504 is constitutional will not go to the Fifth Circuit Court of Appeals or the U.S. Supreme Court. While this is good news, the states have not dropped the case and the Department of Health and Human Services (HHS) have joined in the attack on the rights of transgender people.
The states are still challenging the updated Section 504 rules from 2024. The updated rules include important information and guidance about disability discrimination, particularly for healthcare and education. We will watch the case carefully and report on what happens. We will also watch carefully whether the new Administration tries to change or rescind the updated Section 504 rules.
A new document from HHS also changes the Texas v. Kennedy case. On April 10, 2025, HHS published a “clarification” in the Federal Register. The clarification states that the language about gender dysphoria in the preamble to the updated Section 504 regulations “does not have the force or effect of law” and “cannot be enforced.” For background, HHS had previously reviewed a court case that found that gender dysphoria can be a disability under federal law. At the time, HHS wrote that gender dysphoria could be a disability. But now HHS leadership is saying that people with gender dysphoria are not protected by Section 504. The part of the original complaint brought by the 17 states in September 2024 that complained about HHS including gender dysphoria in the preamble of the updated 504 regulations is now “moot”.
Information provided by Disability Rights Education and Defense Fund (DREDF), founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities.
2/9/25: Seventeen states (Alaska, Alabama, Arkansas, Florida, Georgia, Indiana, Iowa, Kansas, Louisiana, Missouri, Montana, Nebraska, South Carolina, South Dakota, Texas, Utah, and West Virginia) filed a lawsuit against the federal Health and Human Services Department about 504 protections (court filing linked here). It is publicized as a request to remove gender dysphoria as a protected disability under section 504 of the Rehabilitation Act of 1973. However, on the final page of the filing, the plaintiffs ask the court to order that section 504 be declared unconstitutional, not gender dysphoria alone, and that the states be protected from having to enact section 504 anti-discrimination policy.
How this would be detrimental to the disability community:
- If the court makes orders that section 504 is unconstitutional, it could pave the way for those state legislatures to remove the statute and its protections for students and employees with disabilities.
- A court order that section 504 is unconstitutional in this federal case can be used as precedent by other states seeking to remove anti-discrimination protections for people with disabilities.
Why this matters right now:
The deadline for case briefs is February 25, 2025. This means there is still time to ask our elected representatives to file briefs in support of section 504.
What we can do:
- Residents outside the 17 states in the lawsuit: Call and/or write to your state Attorney General and local elected officials, to request they take an official stand in this lawsuit to protect 504 provisions in this country.
- Residents of the 17 states in the lawsuit: Call and/or write to your state Attorney General and local elected officials. You can use the TAKE ACTION button below to link to a tool to help you find your Attorney General’s contact information. Tell them you oppose their request for section 504 to be declared unconstitutional. Consider sharing a personal story of how that would impact you or your loved one(s). Request that they change their position.
- Ask family and friends to contact their state officials and Attorneys General, too.
Documents: These can be shared with elected officials and/or friends and family in your requests for action.
- HHS Section 504 Fact Sheet – a fact sheet about section 504 and what it does. Click this link to view or download.
- HHS Rehabilitation Act Complaint – the states’ court filing. Page 42 (d) and (e) are the requests for court orders about section 504 as a whole. Elected officials can refer to the case specifics when they file a brief. Click this link to view or download.
*Thank you to We Are Brave Together for compiling this information.
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).
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.
Previous Efforts
Rare Disease Week on Capitol Hill - February 24-26
This multi-day event, hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases), brings together rare disease advocates from across the country to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress.
DSF Board members, staff, and community members represented our community at this year’s event on February 24-26 in Washington, D.C. If you’re interested in getting involved in future events like this, please email Shannon.
If you’d like to watch a recording of the advocacy training session from this year, you can watch it on demand at this link.
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:
