The Aidan Jack Seeger Foundation is excited to announce a new initiative to expand newborn screening for ALD nationally. With the introduction of S.2641 by the Senator Charles Schumer of New York and companion Bill H.R. 4692 by Congresswoman Yvette Clarke of New York, the Foundation is working to have every state test for ALD in newborns. After the signing of the ALD recommendation to the RUSP (Recommended Uniform Screening Panel) by Secretary of Health Burwell this past February 16, 2016 and the success New York State has had in the last 2 years of testing their newborns for ALD, these bills will help eliminate the funding, lengthy decision making process and legislative delay in newborn screening for ALD.
Newborn screening currently varies widely by state, leading to disparate health outcomes for babies. For many states, new legislation will have to be passed to start screening for ALD. S. 2641 and H.R. 4692 is game-changing legislation as it would enable every state to screen for ALD by offering funding and protocols for follow up and would eliminate the need to pass new legislation in each state. This policy change will dramatically improve health outcomes by ensuring the earliest possible diagnosis and access to life-saving treatment for patients.