The spinal muscular atrophy community is celebrating significant progress toward adding SMA to newborn screening panels in two states.
Missouri to Become the First State to Screen for SMA
In Missouri, Senate Bill 50 has been passed by both the Missouri House and Missouri Senate, and is currently awaiting the governor’s signature. This bill would institute state-wide screening for both SMA and mucopolysaccharidosis type II (MPS II, also known as Hunter syndrome).
Once signed, the bill will make Missouri the first state in the country to screen all newborns for SMA. The legislation was sponsored by Representative Becky Ruth, a legislator with a longstanding commitment to expanding newborn screening efforts.
We are also excited to announce that Representative Ruth will be a featured speaker at our newborn screening symposium, to take place on Sunday morning at the Annual SMA Conference. She will share from her experience passing newborn screening legislation, including ideas for how our community can support similar efforts in other states.
Florida Governor Signs New Bill on Newborn Screening
In Florida, Senate Bill 1124 was signed into law earlier this week by Governor Rick Scott. The legislation requires Florida to review conditions for newborn screening no later than one year after they are added to the federal Recommended Uniform Screening Panel (RUSP).
As we shared in our last update, SMA has advanced into the evidence review stage for the RUSP, with a decision expected in six to nine months. Florida Senate Bill 1124 will help ensure that, should SMA be added to the RUSP, there will be minimal delay between that decision and full implementation of SMA newborn screening in Florida.
The Importance of Advocacy
The final decision on implementation of newborn screening ultimately rests with each state, and each state has its own process for implementation. The legislation in Missouri and in Florida represent two different approaches to newborn screening, but both reinforce the importance of continued advocacy while the RUSP application is reviewed.
The importance of effective advocacy will be the subject of the newborn screening symposium at the Annual SMA Conference in Orlando. The symposium will be recorded and played back as part of a webinar later in the summer, for those who were not able to attend the conference.
The symposium and all newborn screening activities are supported by the SMA Newborn Screening Coalition. Members of the SMA Newborn Screening Coalition include representatives from pharmaceutical companies Biogen and AveXis, and staff members from Cure SMA.