Newborn Screening Advocacy Update

By Cure SMA | Published On September 25, 2017

Newborn Screening Advocacy Update

At our Annual SMA Conference in July, we announced a grassroots campaign to implement newborn screening for SMA in all 50 states. We know that newborn screening and early treatment is the best chance we have to change the course of SMA for the next generation and beyond. We challenged our community to use August, SMA Awareness Month, to move this important new effort forward—and you rose to the challenge.

House and Senate Reject Proposal to Cut Newborn Screening Funding

On August 2nd, members of the SMA community met with a dozen Senate and House congressional offices. The teams conducting these visits included families affected by SMA, and Cure SMA staff. The visits focused on gaining additional support for federal funding to support newborn screening in the states.

Though implementation of newborn screening happens at the state level, the federal government also plays a key role in funding newborn screening programs, and overseeing the Recommended Uniform Screening Panel (RUSP), which advises states on which conditions should be screened for. Currently, SMA is undergoing a nine month evidence review process for inclusion on the RUSP.

In June, the President proposed a budget that would eliminate federal funding for vital newborn screening programs. Our efforts to push back against these cuts, including these visits in Washington, DC, paid off. Both the House and the Senate appropriations committees passed their funding proposals for FY18, which rejected the recommendations to eliminate federal funding for newborn screening.

The House and Senate must now work together to reconcile their appropriations before a final bill can be passed. Our work in protecting this funding is not done, but we are encouraged that both the House and Senate maintained funding for these critical programs.

Cure SMA Families Visit their Elected Officials During SMA Awareness Month

At the start of August, we urged our community to make calls, send emails, write letters and conduct visits with their state elected officials, asking them to become champions for implementing SMA newborn screening. Thank you to all our families who participated in this activity. We had engagement activities in several states, including Indiana, Illinois, Texas, Maryland, New York, Ohio, California, and New Jersey. And efforts are already underway in other states, including Minnesota and Pennsylvania. Families and clinicians also testified at newborn screening committee meetings in Arizona and Texas, educating regulators on the value of newborn screening for SMA.

Your Advocacy Makes a Difference

As these efforts continue to take shape, we’ll provide information on how you can support newborn screening at both the federal and state level. For more information, sign up for our newborn screening information list.

Newborn Screening Awareness Month

September is Newborn Screening Awareness Month—another great opportunity to continue this momentum.

Here are ways you can stay informed on SMA newborn screening:

  • Sign up to for our newborn screening information list. Complete a short survey and we’ll reach out to you with regular updates and addition information. 
  • Follow us on Facebook and Twitter. We’ll be sharing information and graphics about newborn screening throughout the month. Join us and the rest of the newborn screening community in using the hashtag #NBS17 to help spread awareness of newborn screening.

Pictured above: Kristen Resendez with her son, Jack, and Beth Moore with her daughter, Mary meeting with Texas Representative Zerwas. Kristen and Beth made advocacy visits in Texas and testified at the state's newborn screening committee meeting. 

Topics: Community & Awareness, Advocacy, Front Page News

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