Utah Department of Health's Drug Utilization Review Board
This morning Natalie and I spoke to the Utah Department of Health's drug utilization review board about the availability of two vital drugs for the #DMD community: Exondys and Empflaza. We briefly shared our story, pointed to mounting data that supports the continued use of those drugs, and asked them to make the recommendation to provide access to DMD families.
We didn't approach them as doctors or scientists. We didn't come in that room angry or combative -- in matters of lasting persuasion, that almost never works anyway. Instead, we came to them as a broken-hearted mother and father who lost a child and wanted to help other families have a shot at better outcomes. We wanted them to know those drugs are important and to take note of mounting data that shows they have a measurable impact.
Many of the board members approached us afterward and thanked us for lending a voice and a face to the discussion - they said our approach was refreshing, persuasive and powerful.
I was impressed by their posture and had the distinct impression board members understood their stewardship and responsibility to represent and care for patients.
The motion to recommend those drugs be available to Utah patients was approved.
#mitchellsjourney #mitchellsjourneyinaction @ Utah Department of Health