Closing out 2018 with Good News: Virginia Adopts SMA to their Newborn Screening Panel, Arizona Moves Closer to Adopting SMA Newborn Screening and Illinois Medicaid Covers Spinraza Treatment
The SMA community has multiple victories to celebrate as the year comes to an end. Thank you to all our amazing families and advocates who have and continue to make this progress possible.
Virginia Adopts SMA Newborn Screening
Last month, Virginia’s Newborn Screening Advisory Committee adopted SMA to their Newborn Screening Panel. The state government now has to work out the details of how to do this and how to pay for it, but we expect it to happen fairly quickly.
Thank you to Debbie Schaeffer, Amanda Grab and everyone who advocated for SMA newborn screening in Virginia.
Arizona Moves Closer to Adopting SMA Newborn Screening
Last month, Arizona’s Newborn Screening Advisory Committee voted to move forward in the process for adding SMA to their Newborn Screening Panel. It is currently unknown when the final vote will take place.
Thank you to Angel Wolff and the Arizona SMA Chapter for their advocacy work on SMA newborn screening in Arizona.
Illinois Expands Medicaid for Spinraza Treatment
Illinois recently released their new Medicaid policy for Spinraza. SMA patients that are recipients of Medicaid, will now be able to receive coverage for Spinraza. Under the new policy, Illinois Medicaid will cover Spinraza for an initial 6-month approval for those who have a diagnosis of SMA with a mutation or deletion of the SMN1 gene and has equal to or less than 3 copies of the SMN2 gene, and those who are symptomatic with more than 3 copies will now be considered for approval on a case by case basis.
Thank you to the Illinois SMA Chapter and all the families and individuals who advocated and helped get Spinraza covered by Medicaid in Illinois.
The Importance of Advocacy
In July, Health and Human Services Secretary Alex Azar officially approved adding SMA to the official federal recommendations for newborn screening. Although this is a significant and important step, it is only the beginning. Each state decides what conditions it will include in its screening panel. We must continue to work to make sure that every state screens for SMA.
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 providing states with grants to help cover start-up costs for SMA screening.
We still need your help to make SMA screening permanent in every state! Sign up to be an advocate, send your elected officials a message (find their information here), or email us at firstname.lastname@example.org.
None of our previous victories in newborn screening would have been possible without action from the SMA community. A simple first step, such as attending a newborn screening committee meeting, or making an advocacy visit to a state legislator, can open the door to life-saving early treatment for those born with SMA. 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.
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.