SMA Newborn Screening Moves Forward in New Jersey

Earlier this month, the New Jersey State Senate Committee on Health, Human Services, and Senior Citizens unanimously approved S. 974. Introduced by Senator Troy Singleton, the bill would add SMA to the New Jersey’s screening panel, and provide follow up information to the family of an affected newborn. Special thanks to SMA community advocates Denise Meredith and Kristen Smith for testifying at the committee meeting.

The bill must also be approved by the Budget Committee and the full Senate, and then go through the same process in the House. If you live in New Jersey, please contact your state legislators and ask them to support the bill. You can find contact information for your lawmakers here.

Progress in Pennsylvania

Pennsylvania is also making advancements toward adding SMA to its newborn screening panel. The Newborn Screening and Follow Up Technical Advisory Board, who would make the recommendation to Governor Tom Corbett, met in May, and heard powerful testimony from SMA advocates, including the Henkel family. We expect the Board to officially vote on adding SMA in August.

Also in Pennsylvania, State Representative Marguerite Quinn just introduced a bill to add SMA to the screening panel. Should the Board not vote favorably, we will work to pass legislation to make this happen.

North Carolina

Congratulations to North Carolina! Governor Roy Cooper just signed a budget deal that includes a provision to “auto-include” a condition in the screening panel once it is officially approved by the Secretary of Health and Human Services. This means that once Secretary Azar signs off on SMA, North Carolina will work to immediately include on its screenig panel! Thanks to Jennifer Lee for sharing her story to help make this happen.

Other State News

Advisory Councils in both Kansas and Maine met last month to discuss adding SMA to their states screening panels. We expect both of those groups to vote on the issue in October. Rhode Island has also begun its rulemaking process to add the condition to its statewide panel. Cure SMA sent formal comments to regulators there underscoring the need to implement SMA testing as soon as possible.

Stay tuned for updates and ways to get involved.

Federal Update

Earlier this year, a federal committee recommended that SMA be added to the list of conditions known as the Recommended Uniform Screening Panel (RUSP). This is critical, since many states will not perform a test unless it is on the RUSP. Health and Human Services Secretary, Alex Azar, has until July 8 to formally approve this recommendation.

In the meantime, however, it is vital that we continue to focus on advocacy 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.

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.

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