senate Bill S2386

Enacts Aidan's law to require adrenoleukodystrophy screening of newborns

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Bill Status


  • Introduced
  • In Committee
  • On Floor Calendar
    • Passed Senate
    • Passed Assembly
  • Delivered to Governor
  • Signed/Vetoed by Governor
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actions

  • 17 / Jan / 2013
    • REFERRED TO HEALTH
  • 28 / Feb / 2013
    • REPORTED AND COMMITTED TO FINANCE

Summary

Enacts Aidan's law to require adrenoleukodystrophy screening of newborns.

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Bill Details

See Assembly Version of this Bill:
A211
Versions:
S2386
Legislative Cycle:
2013-2014
Current Committee:
Senate Finance
Law Section:
Public Health Law
Laws Affected:
Amd §2500-a, Pub Health L
Versions Introduced in 2011-2012 Legislative Cycle:
S7838, A10813

Votes

16
1
16
Aye
1
Nay
0
aye with reservations
0
absent
0
excused
0
abstained
show Health committee vote details

Sponsor Memo

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.

view bill text
                    S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                  2386

                       2013-2014 Regular Sessions

                            I N  S E N A T E

                            January 17, 2013
                               ___________

Introduced  by  Sen.  ADAMS  -- read twice and ordered printed, and when
  printed to be committed to the Committee on Health

AN ACT to amend the public health law, in relation to requiring  adreno-
  leukodystrophy screening of newborns

  THE  PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
BLY, DO ENACT AS FOLLOWS:

  Section 1. This act shall be known and may be cited as "Aidan's Law".
  S 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, homo-
cystinuria, 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.
  S 3. This act shall take effect on the one hundred eightieth day after
it shall have become a law; provided, however, that effective immediate-
ly,  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.

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD03768-01-3

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