NEW YORK STATE ASSEMBLY MEMORANDUM IN SUPPORT OF LEGISLATION submitted in accordance with Assembly Rule III, Sec 1(f)
BILL NUMBER: A2609AREVISED 5/18/23
SPONSOR: Hyndman TITLE OF BILL:
An act to amend the public health law, in relation to sickle cell
disease detection and education
PURPOSE:
To require the minority health council to advise the Commissioner of
Health on sickle cell disease and create recommendations to promote the
screening and detection of sick cell disease
SUMMARY OF PROVISIONS:
Section 1: Requires the minority health council, housed in the Office of
Health Equity in the Department of Health, to consider and advise the
Commissioner of Health on sick cell disease. This will include the
promotion of screening and detection of sickle cell disease, especially
among underserved populations, educating the public on sickle cell, and
providing counseling services. The council is also tasked with consider-
ing the feasibility of establishing a statewide public education and
outreach campaign, the provision of grants to approved organizations,
and a health care professional education program.
Section 2: Would provide additional requirements for the sickle cell
health care and wellness education and outreach program by requiring the
Department of Health to consult with patients with sickle cell disease
in the production of information
Section 3: Effective Date
JUSTIFICATION:
About 1 in 13 Black or African American babies are born with the sickle
cell trait, and about 1 in 365 Black or African American babies are born
with sickle cell disease. There are also many people who come from
Hispanic, Southern European, Middle Eastern, or Asian Indian backgrounds
that have the disease. A person can be a carrier of the sickle cell
trait but experience little to no symptoms throughout their. lives.
Being a carrieroof the trait as opposed to having the disease does not
mean that this person will not run any risks. Sickle cell disease is
inherited from a child's parents. Sickle cells result from a mutation
in a gene that helps make hemoglobin. The purpose of hemoglobin in red
blood cells is to take up oxygen in the lungs and carry it to cells in
the tissues of the body. Bodies with sickle shaped cells (infected with
sickle cell disease) can experience difficulties with having oxygen
reach nearby tissues and replacing red blood cells in time with how fast
they are being destroyed. (1)
A Sickle cell disease detection and education program is crucial to
protecting parents and children who are carriers of the trait. Hospi-
tals only began screening for the gene in 2006, that means that there
are generations of people who are not aware that they are carriers and
could pass it on to their children. Education and screening to under-
served populations is necessary to protect future generations of chil-
dren in the United States.
LEGISLATIVE HISTORY:
2021-2022: A6430 (Hyndman)- Veto 53
BUDGET IMPLICATIONS:
None noted.
EFFECTIVE DATE:
Immediately.
STATE OF NEW YORK
________________________________________________________________________
2609--A
2023-2024 Regular Sessions
IN ASSEMBLY
January 26, 2023
___________
Introduced by M. of A. HYNDMAN, McDONALD, AUBRY, SAYEGH, DARLING,
BENDETT, SLATER, NOVAKHOV, WALKER -- read once and referred to the
Committee on Health -- committee discharged, bill amended, ordered
reprinted as amended and recommitted to said committee
AN ACT to amend the public health law, in relation to sickle cell
disease detection and education
The People of the State of New York, represented in Senate and Assem-bly, do enact as follows:
1 Section 1. Section 243 of the public health law, as amended by chap-
2 ter 523 of the laws of 2022, is amended by adding a new subdivision 6 to
3 read as follows:
4 6. Sickle cell disease. a. The health equity council shall consider,
5 and advise the commissioner regarding sickle cell disease.
6 b. The council shall issue recommendations to the commissioner to
7 promote screening and detection of sickle cell disease, especially among
8 unserved or underserved populations; to educate the public regarding
9 sickle cell disease and the benefits of early detection; and to provide
10 counseling and referral services. For purposes of this subdivision,
11 "unserved or underserved populations" means people having inadequate
12 access and financial resources to obtain sickle cell disease screening
13 and detection services, including people who lack health coverage or
14 whose health coverage is inadequate or who cannot meet the financial
15 requirements of their coverage for accessing detection services.
16 c. The council shall consider the feasibility of the following:
17 (i) the establishment of a statewide public education and outreach
18 campaign to publicize evidence based sickle cell disease screening,
19 detection and education services. The campaign shall include: general
20 community education, outreach to specific underserved populations,
21 evidence based clinical sickle cell disease screening services, and an
22 informational summary that shall include an explanation of the impor-
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[] is old law to be omitted.
LBD05973-02-3
A. 2609--A 2
1 tance of clinical examinations and what to expect during clinical exam-
2 inations and sickle cell disease screening services;
3 (ii) the provision of grants to approved organizations;
4 (iii) the compilation of data concerning sickle cell disease and
5 dissemination of such data to the public; and
6 (iv) the development of health care professional education programs
7 including the benefits of early detection of sickle cell disease and
8 clinical examinations, the recommended frequency of clinical examina-
9 tions and sickle cell disease screening services, and professionally
10 recognized best practices guidelines.
11 § 2. Subdivision 1 of section 207 of the public health law is amended
12 by adding a new paragraph (r) to read as follows:
13 (r) Sickle cell disease including but not limited to screening,
14 prevention, and treatment information. The department, through the
15 health equity council pursuant to section two hundred forty-three of
16 this article, or a successor council, shall consult with patients with
17 sickle cell disease and their families and health care providers
18 specializing in treating sickle cell disease, among others, in the
19 production of any such information.
20 § 3. This act shall take effect immediately.
