The spinal muscular atrophy community is celebrating significant progress toward adding SMA to newborn screening panels in several states.
Indiana Poised to Become the Fourth State to Adopt SMA Screening
In Indiana, HB 1017 has been passed by both the House and Senate, and is currently awaiting Governor Eric Holcomb’s signature. This bill would institute statewide screening for both SMA and severe combined immunodeficiency (SCID).
Once signed, the bill will make Indiana the fourth state in the country to adopt SMA screening. The legislation was sponsored by Representative Doug Gutwein, and came about because of the tireless efforts of Adrienne Vollmer, an SMA community advocate.
Ohio Moves One Step Closer to SMA Newborn Screening
As we shared last week, the Ohio Newborn Screening Advisory Committee recommended that SMA be added to their state’s newborn screening panel. The recommendation now goes to the Ohio Department of Health for a rulemaking process. Once these rules are developed and approved, SMA will be officially added to the state panel.
During this rulemaking process, SMA advocates will be able to voice their support for the proposal and for speedy adoption of the rules. Sign up to be an advocate in Ohio, and we’ll notify you when these opportunities for advocacy are open.
Georgia Accepts SMA Screening Recommendation Into Review
Earlier this month, Cure SMA prepared and submitted a recommendation for SMA to the Georgia Newborn Screening Advisory Committee. The recommendation was accepted into review by the committee, with a decision to be announced at their next committee meeting.
We thank the Georgia advocates who made this possible. Advocate Rachel Carrington gave compelling testimony at the meeting. In addition, the White, Merriken and Carrington families all worked to secure letters of support from their state legislators.
The Importance of Advocacy
Earlier this month, the federal Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) recommended that newborn screening for spinal muscular atrophy be implemented nationwide. The recommendation is currently awaiting HHS Secretary Azar’s final approval.
Though that federal process is critical to our case for SMA newborn screening, it is also vital that we continue advocating in all 50 states, since the final decision on implementation rests with each state. On average in the US, one baby each day is born with SMA. Each day represents the opportunity to save a life through newborn screening and early treatment.
Thanks to the dedicated advocacy of our community, Cure SMA has been at the forefront of federal- and state-level work for newborn screening. Cure SMA is also supporting screening in several states, including Utah, through grants that cover the start-up costs for SMA screening.
If you have not already, please sign up to be an advocate. When you sign up, we’ll notify you of opportunities to advocate in your state or district.
Be sure to visit our website or follow us on Facebook or Twitter for updates.
Working together, we can save the lives of babies born with SMA.