Rare Disease Groups Come Together to Advocate for Newborn Screening Legislation 

Groups like Cure SMA, the Cystic Fibrosis Foundation, the Muscular Dystrophy Association, Parent Project Muscular Dystrophy (PPMD), and the National Organization for Rare Disorders (NORD) have a mission:

The United States Senate should pass the Newborn Screening Saves Lives Reauthorization Act, which is due to expire on September 30th!

What is the Newborn Screening Saves Lives Act?

The original piece of legislation — the Newborn Screening Saves Lives Act of 2007 — was signed into law by President George W. Bush, which amended the Public Health Service Act to establish grant programs concerning newborn screening education and outreach.

It also established grant programs to coordinate follow-up care, after newborn screening is conducted. At the time of the legislation’s passage, only 15 states and the District of Columbia required newborns to be screened for 29 core conditions as recommended by the Health Resources and Services Administration.

What would the 2019 reauthorization do?

  • Funding of about $60 million each year, from a current $20 million yearly, to help support states in enacting and running newborn screening programs;
  • Supporting a National Academy of Medicine-led study to evaluate current ways of modernizing screening processes, including the Recommended Uniform Screening Panel (RUSP) process and state barriers to its implementation, and make recommendations for new ones.
  • Would cover through the 2024 fiscal year.

“This bipartisan legislation reauthorizes critical federal activities that assist states in improving and expanding their newborn screening programs,” a release posted by Parent Project Muscular Dystrophy states.

The act empowers the NIH, the CDC, and other similar federal agencies to support and expand newborn screening programs, as well as education programs and quality assurance efforts.

“I believe early detection and preventative medicine are some of the best ways to save lives and reduce the cost of care,” Rep. Mike Simpson of Idaho, a co-sponsor of the House of Representatives bill, said in the release. “There is perhaps no greater example of this than newborn screening and this bill delivers the tools that allow nearly 12,000 babies each year to identify conditions that are rare but treatable.”

The House already passed their version, so now it’s up to the Senate. And seems like a slam dunk, right? Everyone cares about happy, healthy babies! So let’s lend our hand and our voice!

To find out how to contact your United States senators — click here!

Do you support other health-related legislation? Share your stories, thoughts, and hopes with the Patient Worthy community!

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