BILL NUMBER:S7838

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.