Enacts Aidan's law to require adrenoleukodystrophy screening of newborns

Summary of provisions

Section 1. This act shall be known and may be cited as "Aidan's Law". § 2. Subdivision (a) of section 2500-a of the public health law, as amended by chapter 863 of the laws of 1986, is amended to read as follows: (a) It shall be the duty of the administrative Officer or other person in charge of each institution caring for infants twenty-eight days or less of age and the person required in pursuance of the provisions of section forty-one hundred thirty of this chapter to register the birth of a child, to cause to have administered to every such infant or child in its or his care a test for phenylketonuria, homozygous sickle cell disease, hypothyroidism, branched-chain ketonuria, galactosemia, homocystinuria, adrenoleukodystrophy, and such other diseases and conditions as may from time to time be designated by the commissioner in accordance with rules or regulations prescribed by the commissioner. Testing, the recording of the results of such tests, tracking, follow-up reviews and educational activities shall be performed at such times and in such manner as may be prescribed by the commissioner. The commissioner shall promulgate regulations setting forth the manner in which information describing the purposes of the requirements of this section shall be disseminated to parents or a guardian of the infant tested.

Justification

Aidan Jack Seeger, was diagnosed with ALD (adrenoleukodystrophy) on June 2, 2011; he was just 6 years old. ALD is a horrific metabolic disease, which affects the myelin sheath in the brain and affects all neurological functioning, eventually leading to death. Aidan was in 1st grade, above grade level and running and playing as any other child his age. He started having vision problems around April and it was assumed he needed glasses.

After many doctors and finally an MRI and VLCFA blood test, Aidan was diagnosed with ALD. The only option to possibly stop the progression of the disease is a bone marrow transplant. Aidan received his unrelated cord blood transplant at Duke University in North Carolina on July 21, 2011, also his 7th birthday. The months that followed were grueling, the bone marrow transplant was a success, but unfortunately, since he was already symptomatic and with the effects of the chemotherapy and the disease progression, Aidan lost his ability to see, hear, eat, walk and communicate. After 10 months in the hospital, Aiden lost his battle with the disease on April 29, 2012.

If New York and the rest of the nation had newborn screening for ALD, Aidan and so many other children's prognosis would be different. Children who have undergone bone marrow transplants before the onset

of symptoms have had a much better prognosis and most are perfectly healthy today.

The urgency for these families to find out about this genetic disease at birth so they can be monitored and treated before symptoms arise is paramount. Unfortunately, many parents have never heard of this disease until diagnosed after the onset of symptoms. There are horror stories of the families that have had 1 child diagnosed, often too late for treatment, and then miracles, often bittersweet of brothers, cousins, etc. being tested after the tragedy, getting treatment and living full normal lives. We can save lives with a simple test.

Prior legislative history

None.

Fiscal implications

To be determined.

Local fiscal implications

To be determined.

Effective date

This act shall take effect on the one hundred eightieth day after it shall have become a law; provided, however, that effective immediately the addition amendment and/or repeal of any rule or regulation necessary for the implementation of this act on its effective date are authorized and directed to be made and completed on or before such effective date.