Newborn screening is critical to ensure faster access to treatment and cures for genetic conditions. This September, IGT is recognizing Newborn Screening Awareness Month by encouraging patient advocates to highlight this critical program and the ways we could improve newborn screening to better serve patients and families.
Newborn screening programs are state-run, and while all 50 states have programs, not all rare and genetic diseases are currently being screened. Today, it can take up to a decade to achieve nationwide screening of a new condition. As IGT Patient Advocacy Advisory Council members Lesa Brackbill, Cyndi Frank, Jennifer Handt, and IGT Chairman Erik Paulsen share, this is unacceptable – especially when we know new treatments will be here sooner:
IGT believes that the federal Recommended Uniform Screening Panel (RUSP) should include more conditions so that newborns and their families can become aware of genetic conditions as soon as possible. IGT also supports efforts to harmonize newborn screening policies on the federal and state level to help families better navigate a path forward upon diagnosis and face fewer obstacles to treatment.
Congress can help by:
Incentivizing public-private partnerships for financing newborn screening pilots and implementing new conditions;
Modernizing the RUSP process to eliminate redundancies and accelerate the ability to recommend new conditions, and,
Allocating additional funding and support to states to accelerate state compliance with RUSP recommendations.
Newborn screening has the potential to help countless children and families navigate a path forward with challenging, lifelong medical conditions. We must do more to help ensure the entire U.S. newborn screening ecosystem, including the federal RUSP process and state programs, can keep pace with transformative new technologies.
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