by: Parent Project Muscular Dystrophy
During October’s Advocating for Access webinar, the PPMD and Little Hercules Foundation teams dug into what happens after a drug is approved with regard to how state Drug Utilization Review (DUR) boards assess how a therapy is covered.
Little Hercules Foundation’s Kelly Maynard provided an overview of Drug Utilization Reviews (DURs) and explained why they are so important to the Duchenne community. Maynard emphasized that because clinical trial packages for new therapies do not tell the whole story of what it’s like to live with Duchenne, it is critically important for those in the Duchenne community to share their personal experiences and provide more context for what the data means.
Following this overview, Marit Sivertson, whose son lives with Duchenne, shared her perspective as a parent with experience testifying at a DUR Board meeting. She shared tips for patients and caregivers who are interested in providing testimony, and offered insight on the impact these testimonies can have on informing Medicaid coverage policies.
Are you interested in getting involved? Reach out to PPMD’s Lauren Stanford at lauren@parentprojectmd.org.
