On Thursday, April 26, Cure SMA traveled with more than 70 spinal muscular atrophy advocates to Washington DC to meet with congressional offices. The advocates represented 24 states and DC. The purpose of the advocacy day was to advance life-changing opportunities for our community through SMA research and newborn screening.
The visits also emphasized the importance of the recent vote by the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) to recommend nationwide newborn screening for SMA.
As part of this effort, Cure SMA and the SMA Newborn Screening Coalition have been working with members of Congress to circulate a letter encouraging Health and Human Services Secretary Alex Azar to approve this ACHDNC recommendation without delay. During the visits, advocates encouraged members of Congress to add their names to this letter.
As a result of your advocacy, more than 15 senators and representatives have signed on to the letter to Secretary Azar. We thank Representatives Greg Walden and G.K. Butterfield, and Senators Orrin Hatch and Edward Markey for championing this effort.
Advocates also encouraged Congress to increase funding for SMA research and federal newborn screening programs in the FY19 budget. Though the FY19 budget will not be voted on until later this year, offices have already begun putting this bill together.
What Happens Next
Cure SMA has also sent a letter to Secretary Azar on behalf of our entire community. Secretary Azar has until July 8, 2018, to approve this recommendation.