This week, Maryland Delegate Emily Shetty (District 18) and Senator Stephen Hershey (District 36) introduced HB 109 and SB 242, legislation that would help save the lives of more than 200 babies born in Maryland annually. The bills, referred to as RUSP alignment legislation, ensure that all conditions on the federal Recommended Uniform Screening Panel (RUSP) are implemented by the state within a reasonable amount of time. Maryland is the first state to introduce RUSP alignment legislation in 2022, following the adoption of similar laws in four states (Arizona, Georgia, North Carolina, and Ohio) in 2021.
Patient organizations are encouraged to support this legislation by signing the letter of support led by the EveryLife Foundation for Rare Diseases.
Maryland residents are encouraged to ask their state representatives to support this legislation using the Foundation’s online form. The pre-filled form automatically sends a message to constituent’s representatives and takes less than a minute to complete.
“This legislation will ensure that Maryland continues to be a public health leader by keeping our newborn screening program up to date,” said Delegate Shetty.
Maryland is a leader in the field of newborn screening, screening for 34 of 35 conditions currently on the RUSP. However, one of the conditions not currently on the Maryland newborn screening panel, adrenoleukodystrophy or ALD, was recommended for addition more than six years ago. This legislation would require Maryland’s Department of Health to implement new screening recommendations within two years of the RUSP approval, ensuring that babies born in Maryland have the same opportunity for diagnosis and treatments as babies born across state lines.
“I am looking forward to the passage of this important bill to ensure that we can connect Maryland children to proven and effective treatment as quickly as possible,” said Senator Hershey.
Every year, millions of babies born in the US are screened for a variety of devastating and often fatal diseases and conditions that might otherwise go undetected. These simple screens help provide lifesaving early identification, allowing for the earliest possible diagnosis and immediate access to potentially life-saving treatments for babies. In many cases, early detection can avert costly and risky medical procedures later in life.
