Assembly Bill 1559

Assembly Bill 1559

ALD Newborn Screening in California

In 2013, The Myelin Project sponsored California Assembly Bill 1559 – authored by former Assemblyman, now California Senator Dr. Richard Pan – in order to mandate newborn screening of adrenoleukodystrophy (ALD) in California.  On September 25th, 2014, Governor Jerry Brown signed our bill into law making California the fourth state in the United States to pass legislation to screen newborns for ALD –  a potentially life threatening genetic disease that is manageable if detected early, before the onset of symptoms. Currently, only New York and Connecticut are screening newborns for ALD.

Newborn screening identifies conditions that can affect a child’s long-term health or survival. Each year, millions of babies in the U.S. are routinely screened, using a few drops of blood from the newborn’s heel, for certain genetic, endocrine, and metabolic disorders. Early diagnosis and proper disease treatment can make the difference between lifelong impairment and healthy development. Far too often when proper diagnosis of adrenoleukodystrophy (ALD) is finally reached it is too late to save the child affected. This tragic result can be prevented if the affected individual and their doctors know they have the disease and can obtain lifesaving treatments early enough. Testing newborns for ALD (like California does for more than 70 other diseases) is the way to do this.

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California Senator and AB 1559 author Dr. Richard Pan with ALD patient Jeremy Hill, Jr. with ALD parent advocate and Myelin Project Board Member Jeremy Hill, Sr.

On February 16th, 2016, Secretary of the United States Department of Health and Human Services, Sylvia Burwell, approved the addition of adrenoleukodystrophy (ALD) to the Recommended Uniform Screening Panel (RUSP), the federal list of genetic diseases recommended for state newborn screening programs. Assembly Bill 1559 mandated that California begin testing newborns for ALD once Burwell had approved this recommendation.

After meeting with the the California Department of Public Health in June of 2016, we received word from the Genetic Disease Screening Program (GDSP) that ALD screening will begin in mid-September of 2016. In addition, to comply with Assembly Bill 1559, GDSP will also begin screening the backlog of specimens received at our laboratory on and after February 16, 2016. A program announcement letter will be sent prior to the start date.

  • To read the California ALD Newborn Screening Program Implementation Meeting minutes, click here.
  • To see the California ALD Newborn Screening Program Flowchart, click here.
  • If you would like more information about California’s ALD newborn screening program, please contact us.

Do you want to fight for ALD newborn screening in your state? Take the first steps by going to: http://openstates.org.

Find your local Representative and Senator, contact them to set up a meeting to have a Bill introduced in support of ALD Newborn Screening. It will be important to bring documentation of why implementation of ALD Newborn Screening is so important to saving lives.

Cost of adding ALD to a state’s newborn screening panel is minimal in comparison to the cost of caring for the boys that have been diagnosed too late and will need 24 hour care.


Cost Factors will depend on a variety of different factors including:

  • Does your state have the equipment that is necessary?
  • If not, are they willing to outsource testing to another state? (Most cost effective method for smaller states)
  • Go to: Babysfirsttest.org to contact your state’s newborn screening center and find answers.

Over 80% of the current diseases tested for RUSP (Recommended Newborn Screening Panel) are rarer than ALD and some have no treatment options. With ALD it is crucial for an early diagnosis and treatment options are in place.

  • The ALD newborn screening test is proven to be accurate with a false positive expected to be <.1%
  • 1/17,000 children will be diagnosed with ALD
  • An estimated 235 babies will be born every year in the United States with ALD

To find the number of babies born in your state: http://www.cdc.gov/nchs/fastats/map_page.htm

  • Without the crucial early diagnosis these children will die from ALD or Adrenal Insufficiency
  • 90% of boys with ALD will also have Adrenal Insufficiency, which is something that can present itself in the first few months of life and can be easily controlled with a pill that costs pennies a day. Non treatment of adrenal insufficiency can result in death.
  • Once diagnosed with ALD these boys will be monitored with an MRI every 6 months, if any changes are detected treatment will consist of a bone marrow transplant or gene therapy
  • Studies have concluded transplant prior to being symptomatic is the key to having a successful outcome,
  • stopping the disease and these boys having a normal life

Cost effectiveness of treating pre-symptomatic boys as opposed to symptomatic boys is astounding. Pre-symptomatic boys going through transplant can be released from the hospital within 3 months with follow up visits, as opposed to symptomatic boys which almost always have significant disease progression and will need constant medical and nursing care.

​For letters of medical support and other documentation that will be helpful, please e-mail: info@AidanJackSeegerFoundation.org

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