Today, Congress passed a new federal spending bill, increasing funding for several critical newborn screening programs, that the President also signed. The bill increases funding for the Health Resources and Services Administration (HRSA) Heritable Disorders Program by more than $2 million, and increases funding for the CDC’s newborn screening quality assurance program by almost $4 million.
The HRSA program supports the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC), which is the group that reviews conditions for inclusion on the Recommended Uniform Screening Panel. The CDC program supports states in implementing newborn screening, particularly initiatives that focus on the roll-out of new conditions as they are added to the RUSP.
Both programs are vital to our efforts to implement nationwide newborn screening for spinal muscular atrophy. The ACHDNC recently recommended nationwide newborn screening for SMA. As that recommendation is implemented in states, CDC funding will help support those efforts.
Advocacy Makes the Difference
These increases came about because of dedicated advocacy by the SMA community and other newborn screening advocates.
Cure SMA-led advocacy efforts included submitting funding requests and report language during the appropriations process, conducting advocacy visits with House and Senate offices, and recruiting congressional champions to support this funding.
In addition, earlier this year, we asked our grassroots advocacy network to contact their legislators and voice support for increased funding. In total, grassroots activists from 29 states answered that call.
Because this just-passed FY18 bill was delayed, the FY19 appropriations process is already underway. Cure SMA will continue to support advocacy efforts to further increase funding for these programs.
In addition, we continue our efforts to implement SMA screening nationwide. Though the federal process is critical to our case for SMA newborn screening, it is also vital that we continue advocating in all 50 states, since the final decision on implementation rests with each state.
Cure SMA is also supporting screening in several states through grants that cover the start-up costs for SMA screening. These grants will help supplement the increased CDC funding, further expanding the resources available to states as they begin screening for SMA.
If you have not already, please sign up to be an advocate or email us at [email protected]. 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.
Our thanks to the many grassroots advocates in our community who helped support this legislation. We thank our House and Senate champions for the central role they played in this process, particularly Representatives Katherine Clark (D-MA) and Kevin Yoder (R-KS). We also thank our partners in the SMA Newborn Screening Coalition—Biogen, Avexis, and Genentech/Roche—for their support of these efforts.