PPMD is excited to announce another significant milestone: Minnesota has officially approved the addition of Duchenne to the state’s newborn screening panel! Approximately 63,000 babies are born in Minnesota every year, which means that we expect this program to identify at least six babies with Duchenne annually once implemented.
For more than a decade, PPMD has been at the forefront of advocating for Duchenne newborn screening, reflecting our commitment to early diagnosis and better care. Today’s milestone represents a significant advancement in the broader effort to expand newborn screening for Duchenne to other states.
We extend our heartfelt gratitude to all the families and clinicians who provided testimony and contributed to the review process in Minnesota. Your unwavering efforts have paved the way for this remarkable success!
HARD WORK PAYS OFF IN MINNESOTA
In October 2023, the state’s Advisory Committee on Heritable and Congenital Disorders convened for its review meeting, and voted to recommend inclusion of Duchenne for newborn screening in Minnesota.
During that meeting, parent and advocate Marit Sivertson shared the story of her son’s diagnosis and how early diagnosis enabled optimal care. Niki Armstrong, PPMD’s Associate Vice President of Community Research and Genetic Services, also provided comments on behalf of PPMD and our ongoing efforts to advance newborn screening, emphasizing the significance of early diagnosis, which allows for early initiation of medical therapies and early intervention services.
“PPMD’s mission is to accelerate research, impact policy, demand optimal care for every single family, and strive to ensure access to approved therapies,” Pat Furlong, PPMD’s President and CEO, states. “Families with newborns identified through the newborn screening program will benefit from monitoring their child’s development, receiving appropriate physical and speech therapy, genetic counseling, and carrier screening for family members. With seven FDA-approved treatments for Duchenne, including four approved for infancy and additional potential therapies in development, our commitment to demanding optimal care and ensuring access to therapies means care when it has the ability to provide the most benefit—early in a child’s life.”
Following the Advisory Committee’s recommendation in October, Duchenne newborn screening headed to the state Commissioner’s desk for review. State Commissioner of Health Dr. Brooke Cunningham signed the order on January 19, 2024, and Minnesota will now begin the preparations to implement Duchenne newborn screening in the state. The Minnesota Department of Health has indicated that it will share more information once screening for Duchenne is ready to begin.
This is another pivotal step forward for newborn screening for Duchenne, but it’s just the beginning. Our vision is to ensure that all babies in all states have the same opportunities for diagnosis and care. PPMD continues to work towards the inclusion of Duchenne on the federal Recommended Uniform Screening Panel (RUSP), promoting newborn screening for Duchenne in other states, and expanding additional Certified Duchenne Care Centers across the country.
If you are interested in supporting state or federal efforts by sharing your story or contacting your state elected officials, please reach out to Lauren Stanford at firstname.lastname@example.org.
To learn more about PPMD’s work in newborn screening, click here.