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.
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
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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 establish a sickle cell disease registry, hereinafter referred to
28 as the "registry", which shall consist of:
29 (a) a record of individuals in this state who have been diagnosed with
30 sickle cell trait.
31 (b) any other information regarding individuals who have been diag-
32 nosed with sickle cell trait that the commissioner considers necessary
33 and appropriate for inclusion on the registry.
34 (c) educational materials and training materials and programs for both
35 the public and healthcare providers.
36 2. The registry shall:
37 (a) provide information to persons diagnosed with sickle cell disease
38 and, where such person is under the age of eighteen, such person's
39 parents about counseling, intervention, and educational services.
40 (b) notify the parents of patients who are listed in the registry that
41 follow-up consultations with a physician may be beneficial for children
42 diagnosed with sickle cell trait. Such notifications shall occur: (i) at
43 least once when the patient is in early adolescence, when the patient
44 may begin to participate in strenuous athletic activities that could
45 result in adverse symptoms for a person with sickle cell trait; (ii) at
46 least once during later adolescence, when the patient should be made
47 aware of the reproductive implications of sickle cell trait; and (iii)
48 at such other intervals as may be required by the commissioner.
49 (c) notify registered persons upon reaching the age of eighteen that
50 such person has sickle cell disease and any information the registry
51 provides persons upon being first diagnosed with sickle cell disease.
52 (d) in collaboration with experts, develop a surveillance and public
53 awareness campaign regarding the importance of knowing one's sickle cell
54 trait status and to gain knowledge on sickle cell disease for all racial
55 and ethnic groups in New York state. Such campaign shall encourage the
56 medical community, in co-ordination with local governments and other
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1 state entities, to work to ensure that all individuals are made aware of
2 their sickle cell trait status by developing a common strategy for
3 dissemination of screening results, education, and counseling to all
4 unserved and underserved at risk members of the population.
5 (e) publish on the department's website educational materials and
6 training materials and programs for both the public and healthcare
7 providers.
8 3. To facilitate the operations of the registry, the commissioner
9 shall develop guidelines to:
10 (a) obtain information regarding individuals diagnosed with sickle
11 cell trait from health care facilities.
12 (b) protect the confidentiality of the individuals in accordance with
13 The Health Insurance Portability and Accountability Act of 1996.
14 (c) ensure that the registry is developed in a manner consistent with
15 the Health Insurance Portability and Accountability Act of 1996 (Pub. L.
16 No. 104-191), regulations adopted under that Act, and other applicable
17 laws and regulations governing disclosure of health information.
18 4. Physicians licensed under article one hundred thirty-one of the
19 education law shall attend bi-annual continuing education training by
20 the registry. The registry shall revise medical school curriculum on the
21 related effects of sickle cell trait as well as sickle cell disease.
22 § 2417. Annual reports. On or before the first day of February each
23 year, the commissioner shall provide a written report on the information
24 obtained under this title to the temporary president of the senate,
25 speaker of the assembly, chair of the senate finance committee, chair of
26 the assembly ways and means committee, chair of the senate committee on
27 health, chair of the assembly health committee and the public.
28 § 2. This act shall take effect on the ninetieth day after it shall
29 have become a law. Effective immediately, the addition, amendment and/or
30 repeal of any rule or regulation necessary for the implementation of
31 this act on its effective date are authorized to be made and completed
32 on or before such effective date.
