Julia Jenkins, Executive Director at Everylife Foundation, and Dylan Simon, Newborn Screening and Diagnostics Policy Manager at Everylife Foundation, discuss how the organization goes about encouraging different states to include the diseases listed in the Recommended Uniform Screening Panel (RUSP).
Recently, the state of Georgia signed legislation that requires newborns to be screened for all disorders on the federal RUSP. This legislation also implements a timeline during which the screening must begin, and ensures that resources will be available to fund any conditions added to the RUSP in the future.
As Mr. Simon explains, the foundation must be flexible enough to accommodate state-to-state differences while advocating for newborn screening. The first goal in each state is to require newborn screening for all 35 diseases currently on the RUSP. The second goal is to implement a timeline each state must begin screening for a disease once it has been added to the RUSP. Currently, it takes on average 5-6 years after a disease has been added to the RUSP for states to begin screening for that disease. The third goal is to ensure a funding source. Each state requires a different amount of funding despite screening for the same diseases. As Ms. Jenkins explains, state labs often understand how much funding is needed. With this information, bills can be tailored to fit state needs and adhere to state constitutions.
To stay up to date with the latest news in rare diseases, sign up for our newsletter here.