STATE OF NEW YORK ________________________________________________________________________ 6029 2025-2026 Regular Sessions IN SENATE March 4, 2025 ___________ 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; EXPLANATION--Matter in italics (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD10670-01-5
S. 6029 2 1 (v) the establishment of regional sickle cell centers to provide team- 2 based, integrated care including pain management, mental health, trait 3 testing, and genetic counseling; 4 (vi) the implementation of workforce development in primary and 5 specialty care with a focus on sickle cell disease; and 6 (vii) the support of long-term surveillance of sickle cell disease 7 complications, mortality, health services utilization, and cost through- 8 out the lifespan of sickle cell disease patients to understand which 9 populations are most vulnerable and identify emerging trends for action. 10 § 2. Subdivision 1 of section 206 of the public health law is amended 11 by adding a new paragraph (x) to read as follows: 12 (x) consider, adhere to, and act upon all advice, recommendations and 13 mandates provided by the health equity council pursuant to subdivision 14 six of section two hundred forty-three of this article. 15 § 3. This act shall take effect immediately.