Share:
Senate Co-Sponsorship Memoranda
Senate of Pennsylvania
Session of 2025 - 2026
Regular Session
MEMORANDUM
| Posted: | January 13, 2025 11:18 AM |
|---|---|
| From: | Senator Amanda M. Cappelletti |
| To: | All Senate members |
| Subject: | Expanding Pennsylvania’s Newborn Child Screening Program |
| In the near future, I will introduce legislation to add Duchenne Muscular Dystrophy (DMD) to Pennsylvania's newborn screening panel. Duchenne is the most common pediatric muscular dystrophy, leading to progressive muscle loss, cardiorespiratory failure, and premature death. Early detection is vital, as significant, and irreversible muscle damage occurs by the time most children receive a diagnosis, around age five. This legislation aims to ensure that all newborns are screened for Duchenne at birth, allowing for earlier diagnosis and access to life-saving treatments. Currently, families face an average diagnostic delay of 2.5 years, with those from marginalized communities experiencing even longer delays. With eight FDA-approved treatments, including four that can be used in infancy, early intervention can preserve muscle function and improve quality of life. The cost of adding Duchenne to the newborn screening panel is estimated at just $8 per infant. This small investment will enable Pennsylvania to join states like Ohio, New York, Illinois, Massachusetts, and Minnesota in offering this critical screening. Please join me in supporting this legislation to give every child born in Pennsylvania a better chance at a healthier future. |
Memo Updated: January 13, 2025 11:24 AM