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).
- 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.