WASHINGTON D.C. – U.S. Senator Roger Wicker, R-Miss., today released the following statement applauding the Health and Human Services Department’s (HHS) announcement that Duchenne Muscular Dystrophy and Metachromatic Leukodystrophy have been added to the Recommended Uniform Screening Panel for newborns. Click here to watch Senator Wicker’s remarks on at the announcement.

“Nearly 25 years ago, a Mississippian visited my office and told me his son had been diagnosed with DMD. That conversation kicked off decades of work. It has been among my greatest joys in Congress to help combat DMD and other muscular dystrophies. We have seen a direct relationship between increased research funding and longer lifespans for children diagnosed with these terrible diseases. We have also learned that earlier testing transforms lives. Including DMD in universal screening for newborns will be transformational. I will continue to bring awareness to DMD. I encourage every state to implement this life-changing screening.”

In 2001, Senator Wicker introduced the Muscular Dystrophy Community Assistance, Research, and Education (MD-CARE Act), which directed federal research funding toward muscular dystrophies and focused research activities on finding cures. The disease causes a progressive loss of muscle strength, leading to mobility loss and serious heart and lungs problems. In the years since, Senator Wicker has worked across the aisle to update and expand the provisions in this law. To read more about how the MD-CARE Act has benefitted those with DMD, click here.

Background:

1. DMD is the most common fatal genetic disorder diagnosed in childhood.
2. DMD affects about 1 in 5,000 newborns, mostly males, leading to progressive weakness and premature death, typically from respiratory or cardiac complications.
3. The average age of diagnosis in the United States has been as late as 4.5 to 5 years.
4. Caregivers of children with DMD support newborn screening.
5. Ohio and Minnesota include DMD in newborn screening, and other states are planning implementation.
6. Although research is ongoing and side effects must be monitored, treatment with steroids, FDA approved gene therapy, and genotype-specific medications may improve outcomes.