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CDPH Launches Newborn Screening for ALD 

Date: 9/21/2016 
Number: 16-058 
Contact: Ali Bay, (916) 440-7259 

SACRAMENTO – The California Department of Public Health (CDPH) today announced its Genetic Disease Screening Program (GDSP) will now screen babies for adrenoleukodystrophy (ALD), a progressive neurological disease found in about 1 in 20,000 newborn boys. 

“This new screening program will save children’s lives,” said CDPH Director and State Public Health Officer Dr. Karen Smith. “Early diagnosis and treatment can halt the progression of the life-threatening form of the disease, which will have a profound impact on California families.” 

Screening for adrenoleukodystrophy (pronounced ah-DREE-no-luke-oh-dis-trow-fee) will begin statewide today. CDPH will retroactively screen newborn blood samples that were received by the laboratory on or after February 16 of this year. The Department estimates that up to 100 California babies each year will be referred for follow-up services based on screening results. With early identification, the disease can be monitored before complications develop and appropriate treatment options can be made available to prevent serious and permanent health problems. 

Some boys with ALD will develop a progressive, life-threatening form of the disease and can die without medical intervention within a short time after complications are recognized. ALD also causes adrenal gland dysfunction, which is characterized by weight loss, muscle weakness, fatigue, and life-threatening complications. ALD complications typically do not appear until after age 3. 

In 2014, Governor Jerry Brown signed Assembly Bill (AB) 1559, which mandated that CDPH add ALD to the state’s newborn screening panel once the disorder was added to the national guidelines for state newborn screening programs. ALD was added to the national guidelines in February 2016. 

"For children born with ALD, the difference between an early diagnosis through infant screening and a late diagnosis when symptoms start showing up, could be life and death,” said Dr. Richard Pan, a pediatrician and Senator representing the Sacramento region who authored AB 1559 in 2014. “I applaud CDPH on the launch of their screening program created through AB 1559 and I am thrilled that California children will suffer less and live longer as a result.” 

Newborn screening is a public health service provided to all babies in California in order to identify many serious diseases. If not found and treated early, many of the diseases can cause serious and permanent health problems, developmental delay and even death. Since newborn screening began in 1966, more than 14,000 California babies have been found with various diseases and treated. 

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