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.
NEW YORK STATE ASSEMBLY MEMORANDUM IN SUPPORT OF LEGISLATION submitted in accordance with Assembly Rule III, Sec 1(f)
BILL NUMBER: A5873
SPONSOR: Jackson TITLE OF BILL:
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
PURPOSE OR GENERAL IDEA OF BILL:
The purpose of this bill is to establish a registry of persons with
sickle cell disease. SUMMARY: OF PROVISION:
Section 1: Amends article 24 of the public health law by adding a new
title 1-c that establishes a sickle cell disease registry, requirements
for sickle cell disease detection and education and annual report guide-
lines to ensure accurate data.
Section 2: sets effective date
JUSTIFICATION:
Those with the sickle cell trait are more at risk for health conditions
such as anemia, exertional sickling, hematuria, kidney cancer, associ-
ated heart diseases, retinopathy, and other health problems, despite
having the same life expectancy, as the general population. Presently,
all children born in the state are tested for sickle cell anemia at
birth. Under this bill, if a patient were to test positive, the diagno-
sis will be documented in a central registry and the patient's parents
will be informed of the benefits and availability of genetic counseling.
The Department of Health and Human Services will then have to notify the
parents of those within the registry, at least four separate times;
these follow up consultations with a physician may be beneficial for the
patient's health. This bill would help increase awareness for those who
may have the sickle cell trait and promote beneficial health practices.
PRIOR LEGISLATIVE HISTORY:;
A2661-A/S1890-A of 2023-2024: Referred to Health
S8923 of 2023-2024: Referred to Health
S8924 of 2023-2024: Referred to Health
A6493/52281 of 2019-2020: Referred to Health
FISCAL IMPLICATIONS FOR STATE AND LOCAL GOVERNMENTS:
TBD.
EFFECTIVE DATE:
This act shall take effect on the ninetieth day after it shall have
become a law. 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 to be made and completed
on or before such effective date.
