Advocacy In Action
Dup15q Alliance is proud to be working alongside our advocacy partners to make sure our community’s voice is heard in key legislation. Dup15q Alliance has signed on in support of the following:
- Medication Access in Third COVID Package Letter: A letter led by the Epilepsy Foundation urging Congress to include provisions in the COVID-19 packages that will ensure access to medications and supplies, including requiring all payers to relax refill limits so that people can have up to a 90-day supply; ensuring that the protections are extended to certain controlled substances including anti-seizure medications; and requiring all payers to waive prior authorization and other utilization management practices. (Download here.)
- Every Life Foundation Patient Community COVID Access Letter: A letter led by the EveryLife Foundation which is very similar to the Foundation’s letter and focused on medications, though directed at state-level decision makers and entities;
- Defense Health Research Consortium (DHRC): Federal appropriations for Fiscal Year (FY) 2021 outside of the COVID-19 relief package. The letter will be sent to the House and Senate Appropriations Committees, expressing support for increased funding for the Defense Health Research Programs, or Congressionally-Directed Medical Research Programs (CDMRP), at the Department of Defense. The CDMRPs fund cutting-edge research into a number of epilepsy-related issues including post-traumatic epilepsy (PTE) resulting from traumatic brain injury (TBI) and the tuberous sclerosis complex (TSC).
- California Seizure Safe Bill: This bill seeks that schools collaborate with the parent or guardian of each pupil diagnosed with a seizure disorder to create a seizure action plan, which will provide school nurses and employees with important information specific to that child’s condition. This would not only benefit students living with epilepsy, but schools and school personnel as well by ensuring that they are prepared to care for a student in the event of an emergency. Lean more here.
- Access To Medications Letter: This letter helped get a provision in the law that requires Medicare plans to provide an up to 90-day supply of medications. However, we still have work to do to ensure that this includes controlled substances (since some anti-seizure medications are labeled that way) and extends to Medicaid and private insurance. (Full letter here)
- The Defense Health Research Consortium: This letter encourages to continue support for the critical and highly successful defense health research programs funded through the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense (DoD).
- Curing the Epilepsies: Dup15q Alliance proud to join in writing a letter of support to the NIH and providing feedback for the Curing Epilepsy: Focus on the Future research benchmarks. Every 7 years, the NINDS organizes the Curing The Epilepsies conference to review progress against the existing epilepsy research benchmarks and set new ones for the next 7 yrs.
- Texas Drug Utilization Review Board Letter: Dup15q Alliance is proud to sign on to a letter the the Texas Drug Utilization Review board encouraging the TX DUR to list the intranasal anticonvulsant rescue medications as “preferred medications” without any requirement that a patient must fail one or more rescue medications.
- Medicare Program; Medicare Coverage of Innovative Technology (MCIT) and Definition of “Reasonable and Necessary”: Dup15q Alliance is proud to be a member of the Haystack Project committed to the Rare and Ultra Rare Disease and writing in support of Medicare coverage for off-label use of medical devices.
- For Access to Anticonvulsants: Dup15q Alliance joined with the Epilepsy Community in a signed statement calling on the Biden Administration to rescind a demonstration announced by the previous administration that would severely limit access to anticonvulsants (also known as anti-seizure medications) for the 1.1 million Medicare beneficiaries living with the epilepsies.
- Virginia Seizure Safe Bill: Dup15q Alliance is proud to sign on in support of the Jamie and Brie Strong Act. The Jamie and Brie Strong Act has four components included in the bill: Train school personnel on seizure detection and first aid response; Mandate Seizure Action Plans be on file for every student diagnosed with epilepsy or a seizure disorder, and require those plans be available to all personnel responsible for the student; Ensure the administration of medications approved by the U.S. Food & Drug Administration; and A Good Samaritan Clause for those who act in good faith in accordance with the bill’s provisions. Dup15q Alliance along with our partners supports the Seizure Safe School Initiative for 12 additional states that have legislation coming up over the next several months. (AL, AZ, IA, MI, MD, MO, NE, OK, PA, SC, VA, WA)
- Nomination for Dr. Janet Woodcock: Dup15q Alliance is proud to sign on to a letter in support of Dr. Janet Woodcock in her current role as Acting Commissioner and as she is considered for potential nomination as Commission of the U.S. Food and Drug Administration. (FDA) Dr. Woodcock is a passionate advocate for American patients and consumers, an ally to patient advocacy groups and a fearless leader at the FDA. Read more on page 5 of the LA Times.
- Prioritization of Individuals with Rare Diseases and Caregivers for COVID-19 Vaccines: Dup15q is one of 69 advocacy groups, healthcare providers and biotech companies to join together and submit a letter to the National Governors Association urging them to include individuals with rare diseases and primary caregivers of high-risk individuals as priorities in the administration of any FDA-approved or authorized COVID-19 vaccines. Our partners at TSC Alliance will be submitting this letter to every state over the coming weeks.
- Project Baby Dillo: Dup15q is proud to sign on in support of Project Baby Dillo. Project Baby Dillo, patterned after similar successful efforts in California and Florida, aims to solve the problem of delayed diagnosis of genetic diseases by delivering timely whole-genome sequencing (WGS)
pilot data to demonstrate faster diagnoses, better health outcomes, and decreased cost of care for critically ill newborns in Texas.
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