BILL NUMBER:S2386

TITLE OF BILL:  An act to amend the public health law, in relation to
requiring adrenoleukodystrophy screening of newborns

PURPOSE:
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.