Kansas Adopts SMA Newborn Screening as Several Other States Move Closer to Adoption

By Cure SMA | Published On October 30, 2018

Kansas Adopts SMA Newborn Screening as Several Other States Move Closer to Adoption

Progress is currently being made in several states for getting SMA added to Newborn Screening panels. We are delighted to share this news with you as some states move closer to adoption of SMA Newborn Screening.

Kansas Adopts SMA Newborn Screening

Kansas has adopted SMA Newborn Screening and is working toward implementation. The Kansas Health Commissioner recently approved adding SMA to the state’s Newborn Screening panel. As part of the implementation panel, state officials will form a subcommittee to develop a timeline for implementation. Cure SMA’s Senior Scientific Manager, Jackie Glascock will be a part of this subcommittee.

Thank you to Mr. Sykora, Lin Fennell and everyone who participated in the advocacy efforts to get this done and bring awareness to the importance of SMA Newborn Screening.

New Hampshire Moves One Step Closer to SMA Newborn Screening

The New Hampshire Newborn Screening Advisory Committee voted unanimously to add SMA to their Newborn Screening panel. Stay tuned for updates on next steps.

Thank you to Deodonne Bhattarai, the New Hampshire Cure SMA Chapter and all those who advocated to make SMA screening possible in New Hampshire.

Georgia Moves One Step Closer to SMA Newborn Screening

Last month, the Georgia Newborn Screening Committee voted to approve SMA screening. The proposal still needs to be approved by the Commissioner of the Georgia Department of Public Health and funding through the state budget process.

Thank you to Tara Ragan and the Georgia Cure SMA Chapter for their advocacy efforts and hard work to make this possible.

Pennsylvania Moves One Step Closer to SMA Newborn Screening

Last month, Pennsylvania’s Newborn Screening and Follow-Up Technical Advisory Board voted to include SMA on the Newborn Screening panel. Like in Georgia, the Secretary of Health must approve the proposal and it must be funded through the state budget.

Thank you to Allyson Henkel, and everyone who advocated and sent letters to the Pennsylvania Governor and Secretary of Health to get SMA added to the Newborn Screening panel.

Iowa Moves One Step Closer to SMA Newborn Screening

This month, the Center for Congenital and Inherited Disorders Advisory Committee (CIDAC) in Iowa voted to proceed to the next phase of adopting SMA Newborn Screening, which is a pre-implementation assessment. If this demonstrates that the Iowa Newborn Screening Program has the capacity to do SMA screening, then a pilot test phase will begin and potentially lead to universal screening in Iowa.

Thank you to Meghan Ramirez and Sarah Turnbull who attended this meeting, as well as all our SMA families who worked to make this happen.

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 advocacy@curesma.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.

Topics: Our Impact, Advocacy, Front Page News

© 2018 Cure SMA | Privacy Policy

Powered by Blackbaud
nonprofit software