On August 27th at a meeting of the Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children in Rockville, Maryland, ALD newborn screening was approved for addition to the Recommended Uniform Screening Panel. This was the culmination of 3 years of work by researchers, practitioners and patient advocates.
Approval by this committee means the test meets the highest of standards. With this decision, Public Health Directors in all states can be assured this test and follow up protocol are sound and reliable, ready for addition to their state’s newborn screening panel. We expect that shortly after Secretary Burwell formally adds this to the panel, CT, CA, NJ, TN and IL will start the implementation process.
This is a great achievement but there is more work to be done until EVERY baby born in our country will be tested for ALD. A child’s zip code should not determine whether or not he/she is screened for this insidious disease.