Law to Expand and Improve Newborn Screening Enacted in Florida

The EveryLife Foundation for Rare Diseases applauds Governor Rick Scott,  Senator Lauren Book (D-FL) and Representative Heather Fitzenhagen (R-FL) for their leadership in helping to enact SB 1124, newborn screening legislation that will ensure a brighter future for babies born in Florida.

This bipartisan legislation was supported by more than 100 patient organizations and passed with unanimous support in the Florida legislature. The law strengthens Florida’s newborn screening program to help ensure that the state remains a leader in detecting life-threatening diseases. Newborn screening can provide lifesaving early warnings of conditions that otherwise might go undetected. This ensures the best chance for proper diagnosis and access to life-saving treatments while potentially averting costly and risky medical procedures.

“I applaud Governor Scott for signing this important piece of legislation. It will save lives! We know that early screenings and early interventions are critical in many of our most common diseases like diabetes, heart disease, and many cancers.  Early screenings for newborns and infants are just as important – not only for common illnesses but for rare diseases as well.  We know that for the small group of children who may be diagnosed with a rare disease, early interventions and treatment are essential to their very survival.  This victory is even more meaningful for those families who traveled to Tallahassee to share their stories. This not only inspired me, but have paved the way for millions of future generations of babies born in Florida,” said Senator Book, the lead Senate co-sponsor of the legislation.

“I am so pleased that SB 1124 is law in Florida. Florida will now lead the nation in ensuring that every family will have the best screening, care, and treatment, from the very first day a baby is born. Those families who may be faced with a rare disease will have the opportunity to explore all of their treatment options to get the best outcome for their child,” said Representative Fitzenhagen, the lead House co-sponsor of the bill.

S.B. 1124 requires Florida’s Genetics and Newborn Screening Advisory Council to review the federal Recommended Uniform Screening Panel (RUSP) guidelines  within one year of new diseases being recommended at the federal level. Diseases recommended for screening by Florida’s Council must be implemented by the state’s Department of Health within 18 months.

“We were proud to partner with patients, patient advocacy organizations and policymakers in Florida to make newborn screening a higher priority,” said Julia Jenkins, Executive Director the EveryLife Foundation. “We are grateful to the rare disease patients and families who took action to support SB 1124 and appreciate the leadership of Senator Book and Representative Fitzenhagen on this lifesaving legislation. Passage of SB 1124 builds on the success of similar legislation we drafted and passed in California last year. We look forward to expanding our newborn screening efforts in other states across the nation.”

The budget recently approved by Governor Scott also includes new funding to screen for X-ALD, a deadly rare disease, and support to enhance the state’s newborn screening infrastructure.

Florida has the 4th highest birthrate in the country with 215,000 babies born each year. It is estimated that 1 in 10 will suffer from a rare disease and approximately 30 percent of children with a rare disease will not live to see their fifth birthday. Florida, however, does not yet screen for MPS I, Pompe, nor X-ALD. The new law will enable Florida to change these statistics through timely consideration and implementation of newborn screens.

The Foundation’s newborn screening initiative seeks to significantly increase the number of rare diseases screened for across the United States, and provide essential resources to families, states and organizations to ensure successful screening.