New York A 5873: Establishes a registry of persons with sickle cell disease

Bill Text

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A05873 Summary:

BILL NOA05873 

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SAME ASNo Same As

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SPONSORJackson

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COSPNSR

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MLTSPNSR

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Add Art 24 Title 1-C §§2415 - 2417, Pub Health L

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Requires persons and parents of children who test positive for sickle cell disease are informed of such diagnosis and provided with educational materials; establishes a registry of persons with sickle cell disease; requires the department of health issue an annual report on sickle cell disease.

Go to top A05873 Actions:

BILL NOA05873 

&nbsp

02/24/2025referred to health

01/07/2026referred to health

Go to topA05873 Committee&nbspVotes:

Go to topA05873 Floor&nbspVotes:

There are no Assembly votes for this bill in this legislative session.

Go to topA05873 Text:

 STATE OF NEW YORK
 ________________________________________________________________________

 5873

 2025-2026 Regular Sessions

 IN ASSEMBLY

 February 24, 2025
 ___________

 Introduced by M. of A. JACKSON -- read once and referred to the Commit-
 tee on Health

 AN ACT to amend the public health law, in relation to requiring persons
 and parents of children who test positive for sickle cell disease are
 informed of such diagnosis and provided with educational materials,
 establishes a registry of persons with sickle cell disease, and
 requires the department of health issue an annual report on sickle
 cell disease

 The People of the State of New York, represented in Senate and Assem-
 bly, do enact as follows:

 1 Section 1. Article 24 of the public health law is amended by adding a
 2 new title 1-C to read as follows:
 3 TITLE 1-C
 4 SICKLE CELL DISEASE

 5 Section 2415. Sickle cell disease detection and education.
 6 2416. Sickle cell disease registry.
 7 2417. Annual reports.
 8 § 2415. Sickle cell disease detection and education. 1. When an infant
 9 or child tested for sickle cell disease, either under section twenty-
 10 five hundred-a of this chapter or for any other purpose, is found to
 11 have such disease, the entity which performed the testing shall notify
 12 the administrative officer or other person in charge of the institution
 13 caring for the infant or child and document the findings to the sickle
 14 cell disease registry established under section twenty-four hundred
 15 sixteen of this title. Such administrative officer or other person in
 16 charge of the institution caring for the infant or child upon receiving
 17 such notification shall inform the physician caring for such infant or
 18 child and provide the parents of such child with educational pamphlets
 19 created by the department concerning sickle cell disease. Such pamphlets
 20 shall include, but not be limited to:

 EXPLANATION--Matter in italics (underscored) is new; matter in brackets
 [ ] is old law to be omitted.
 LBD03440-01-5

 A. 5873 2

 1 (a) the availability and benefits of genetic counseling performed by a
 2 licensed genetic counselor.
 3 (b) information concerning the fact that one or both of the parents
 4 carries sickle cell trait and the risk that other children born to the
 5 parents may carry sickle cell trait or may be born with sickle cell
 6 disease.
 7 (c) information about counseling, intervention, and educational
 8 services.
 9 2. When a person is diagnosed with sickle cell disease, the diagnosing
 10 physician shall document the findings to the sickle cell disease regis-
 11 try established under section twenty-four hundred sixteen of this title
 12 and provide such person with educational pamphlets created by the
 13 department concerning sickle cell disease. Such pamphlets shall include,
 14 but not be limited to:
 15 (a) the availability and benefits of genetic counseling performed by a
 16 licensed genetic counselor.
 17 (b) information concerning the fact that one or both of the parents of
 18 someone with sickle cell disease carries the sickle cell trait and the
 19 risk that children born to such parents may carry sickle cell trait or
 20 may be born with sickle cell disease.
 21 (c) information about counseling, intervention, and educational
 22 services.
 23 3. Information provided to the sickle cell disease registry under this
 24 section shall be provided in the form and manner prescribed by the
 25 department.
 26 § 2416. Sickle cell disease registry. 1. The department of health
 27 shall establi