Requires the health equity council to issue mandates related to the treatment of sickle cell disease; requires the commissioner of health to adhere to and act upon the recommendations and mandates of the health equity council.
STATE OF NEW YORK
________________________________________________________________________
8924
IN SENATE
March 28, 2024
___________
Introduced by Sen. PARKER -- 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 the
health equity council to issue mandates related to the treatment of
sickle cell disease
The People of the State of New York, represented in Senate and Assem-bly, do enact as follows:
1 Section 1. Paragraph c of subdivision 6 of section 243 of the public
2 health law, as added by chapter 684 of the laws of 2023, is amended to
3 read as follows:
4 c. The council shall consider the feasibility of the following, and
5 notwithstanding the findings, shall issue mandates to the commissioner
6 for:
7 (i) the establishment of a statewide public education and outreach
8 campaign to publicize evidence based sickle cell disease screening,
9 detection and education services. The campaign shall include: general
10 community education, outreach to specific underserved populations,
11 evidence based clinical sickle cell disease screening services, and an
12 informational summary that shall include an explanation of the impor-
13 tance of clinical examinations and what to expect during clinical exam-
14 inations and sickle cell disease screening services;
15 (ii) the provision of grants to approved organizations;
16 (iii) the compilation of data concerning sickle cell disease and
17 dissemination of such data to the public; [and]
18 (iv) the development of health care professional education programs
19 including the benefits of early detection of sickle cell disease and
20 clinical examinations, the recommended frequency of clinical examina-
21 tions and sickle cell disease screening services, and professionally
22 recognized best practices guidelines;
23 (v) the establishment of regional sickle cell centers to provide team-
24 based, integrated care including pain management, mental health, trait
25 testing, and genetic counseling;
26 (vi) the implementation of workforce development in primary and
27 specialty care with a focus on sickle cell disease; and
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[] is old law to be omitted.
LBD15055-01-4
S. 8924 2
1 (vii) the support of long-term surveillance of sickle cell disease
2 complications, mortality, health services utilization, and cost through-
3 out the lifespan of sickle cell disease patients to understand which
4 populations are most vulnerable and identify emerging trends for action.
5 § 2. Subdivision 1 of section 206 of the public health law is amended
6 by adding a new paragraph (w) to read as follows:
7 (w) consider, adhere to, and act upon all advice, recommendations and
8 mandates provided by the health equity council pursuant to subdivision
9 six of section two hundred forty-three of this chapter.
10 § 3. This act shall take effect immediately.
