ALD Resources

When babies are born, their heel is pricked and spots of blood are placed on a special paper that is sent to their state’s newborn screening lab. Each state has a different list of diseases for which they screen. 
 
Nationally, the Recommended Universal Screening Panel (RUSP) contains the list of diseases for which the federal government recommends each state screen. The process for getting a disease added to the RUSP begins with the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) which reports to the U.S. Health Resources and Services Administration (HRSA), which is part of the United States Department of Health and Human Services (HHS). Once a disease is added to the RUSP, states are supposed to implement over time. However, the implementation can take more than 10 years. 
  
On August 27, 2015 the SACHDNC has recommended ALD to be added to RUSP, but we need the approval of Secretary of Health Sylvia Burwell before ALD is officially added to the RUSP. The Secretary of Health has 120 days from the date stamp (October 19, 2015) on the recommendation letter sent by the SACHDNC Chairman. The Secretary has until the middle of February to make her decision.  However, in the meantime, precious lives will be lost if ALD is not added to state newborn screening panels. With each passing day without ALD on the screening panel, children are unnecessarily put at significant risk of being condemned to an unnecessary and, in many cases, preventable death. Newborn screening began in the State of New York on December 30, 2013 and in 2 years of testing New York State has identified 42 babies; 16 boys ALD, 19 girls ALD carriers and 7 babies with other peroxisomal storage disorders. Needless to say, their families are incredibly grateful for the opportunity to save their children.
 
California, New Jersey and Connecticut have legislation stating once ALD has been added to the RUSP, their respective newborn screening labs will start testing immediately. It is crucial for the Secretary of Health to make her decision as quickly as possible.

Several other states are moving forward to introduce legislation or are working with their newborn screening laboratories to begin screening for ALD in their state. Arizona, Colorado, Virginia, Florida, Iowa, Washington, Tennessee, Massachusetts, Maryland, Michigan, Minnesota and Ohio have all started the process to this goal. ALD Connect is pleased to serve as a resource to help implementation at the state level.

CLICK HERE to read more information about the Advistory Committee on Heritable Disorders in Newborns and Children, the evidence review report, meeting dates, etc. 

Published Feb 04, 2016 – Hurry up, Burwell, lives are at stake 

The Hill published an article on ALD being added to the Recommended Screening Panel. 
Secretary Burwell has had 4 months to add ALD to the newborn screening list. What’s the wait?  
California, New Jersey and Connecticut are ready to start. Babies lives are at stake! Please share and ask your friends and family to sign this petition! Read more 

If you have any questions about newborn screening, wish to connect with other advocates or need help getting started in your state, please contact:

Elisa Seeger 
AIDAN JACK SEEGER FOUNDATION
elisaseeger721@gmail.com 
www.aidanhasaposse.org