Victory

Keep Waiting? NO! Secretary Burwell: Add ALD To The Newborn Screening Panel

Secretary of Health and Human Services Sylvia Burwell has the power, today, to begin the process of testing 630,000 U.S. newborns for ALD, adrenoleukodystrophy. It’s a genetic disease affecting 1/17,000 people, most severely boys and men. Undiagnosed, it often results in paralysis or death. Testing at birth is the key to survival for ALD sufferers.

New York (250,000 annual newborns) is the only state currently testing newborns for ALD. But three additional states are just waiting for Burwell’s nod: California (500,000 annual newborns), New Jersey (100,000 annual newborns), Connecticut (30,000 newborns). These states have laws on the books mandating they comply with the federal government’s Recommended Universal Screening Panel.

In August 2015 – after 3 years of lobbying by mothers and a 72-page scientific review – Secretary Burwell’s advisory committee on newborn screening voted 11 to 1 in favor of adding ALD to the RUSP. The committee sent notice of its decision to Burwell on September 25, 2015, paving the way for her act. That was four months ago.

Ms. Burwell, what’s the hold up? Every 36 hours another U.S. baby is born with ALD. Add ALD to RUSP. Now.

 

This petition was delivered to:
  • Secretary of Health and Human Services
    Sylvia Mathews Burwell


    Aidan Jack Seeger Foundation started this petition with a single signature, and won with 16,779 supporters. Start a petition to change something you care about.