Today, the EveryLife Foundation for Rare Diseases applauded the signing of HB 109 and SB 242, bills that will help save the lives of more than 200 babies born in Maryland each year. The law, referred to as RUSP alignment legislation, implements a two-year timeline in which screening must begin for new conditions added to the federal Recommended Uniform Screening Panel (RUSP). Maryland is the third state to adopt RUSP alignment legislation this year and the tenth overall, resulting from increased advocacy efforts in recent years.
“As new treatments and new diagnostic tests are developed each year, an increasing number of disease communities will be able to utilize newborn screening to deliver life-saving diagnosis early in life. RUSP alignment legislation ensures that Maryland will keep up with those developments,” said Annie Kennedy, EveryLife Foundation for Rare Diseases Chief of Policy, Advocacy, and Patient Engagement. “We are grateful for the Maryland State Legislature for passing, and to the Governor for signing this impactful legislation, that will ensure Maryland remains a leading state for newborn screening.”
For over 50 years, every newborn in the US has been afforded the chance to be screened for a range of debilitating and deadly diseases. Over 200 babies born in Maryland each year benefit from the early detection and delivery of life-saving treatments. Yet, as new technology allows for screening for more diseases, Maryland still does not screen for all 35 federally recommended tests. As a result, children and their families miss the opportunity to receive treatment and avoid life-long disability or death.
The EveryLife Foundation partnered with 60 patient advocacy organizations to support the legislation, including MarylandRARE. The bill was championed by Delegate Emily Shetty and Senator Steve Hershey.
“Maryland has consistently been looked to as a public health leader, and this new law ensures that will continue by keeping our newborn screening program up to date,” said Delegate Shetty.
“I thank the Governor for signing this important piece of legislation that will ensure Maryland children are connected to proven and effective treatment as quickly as possible,” said Senator Hershey.
“Thank you to our Maryland General Assembly, Governor Hogan, and the EveryLife Foundation for ensuring that every family in our state has the opportunity for early diagnosis, and treatment at the earliest possible moment,” said Claudia Fennell, Maryland resident and parent of a child diagnosed with Batten CLN2. “Most people don’t realize how many rare and devastating disorders present symptoms later in childhood with no family history to give warning. For our daughter with Batten CLN2, treatment starting at symptom onset was too late. This science-forward, impactful legislation gives families a fighting chance at life-changing treatment and helps level the inequities of access to diagnostic technology or clinical expertise in rare disorders.”
The EveryLife Foundation’s newborn screening advocacy program is made possible by the support of Sanofi, and other industry partners including Alexion Pharmaceuticals, Orchard Therapeutics, Pfizer, and Spark Therapeutics.
To learn more about the legislation and how to support newborn screening, visit RareScreening.org.
