Support Increased Federal Funding for NBS Programs

Newborn screening (NBS), which allows every baby born in the U.S. to be tested for certain treatable disorders, is one of the most successful public health programs in the country. Because early diagnosis and intervention are critical in treating progressive neuromuscular disorders, MDA is committed to pursuing increased screening for diseases under our umbrella.

Currently, Pompe disease is the only neuromuscular disorder included on the Recommended Uniform Screening Panel (RUSP)—a national list of diseases recommended for screening at birth—but MDA and other NBS stakeholders are working together to add more neuromuscular diseases to the list. Presently, screening for spinal muscular atrophy (SMA) is under review by the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). The ACHDNC meets four times a year and is responsible for recommending disorders to be added to the RUSP. The next meeting occurs this week on August 3 and 4.

In addition to SMA, efforts are also in place to include Duchenne muscular dystrophy (DMD) on the RUSP.

With a robust therapy development pipeline and more potential treatments moving forward, we believe it is critical that the national programs that support NBS efforts in every state have the necessary funding to help ensure all babies have access to life-changing and life-saving therapies.

While each state operates its own NBS program, critical activities and decisions take place at the national level. Federal-level support helps implement screening for new disorders and improve the quality and efficiency of screening. Such resources are allocated through several different budgets, including the Centers for Disease Control and Prevention (CDC) and the Health Resources and Services Administration (HRSA). The Newborn Screening Quality Assurance Program (NSQAP) within the CDC and the Heritable Disorders program within HRSA help states improve and enhance NBS programs.

Current funding levels for these national programs fall short, and we need your help ensuring that they are funded at a sufficient level.

On July 19, the House Appropriations Committee passed its Fiscal Year 2018 (FY18) Labor, Health and Human Services, Education, and Related Agencies funding bill, which set out funding for CDC and HRSA. The House bill decreases the CDC budget by $198 million (out of a total $7 billion budget) and HRSA by $398 million (out of a total $5.8 billion budget), while funding remained flat from the FY17 budget for NSQAP ($8.4 million) and the Heritable Disorders program ($13.9 million). This translates into flat funding for the national NBS programs from FY17 funding levels. Much needed increases for the NBS programs at the federal level were not included in the House bill; however, MDA thanks lawmakers for keeping funding for these programs in tact in light of the proposed funding cuts set out by the administration.

Please take a moment to let your members of Congress know that federal funding of NBS programs is essential to progress in the early identification and treatment of disorders screened for at birth and to urge funding for these programs at the highest level possible.

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