Senate Bill S6029

                             
                     S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   6029
 
                        2025-2026 Regular Sessions
 
                             I N  S E N A T E
 
                               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:
 
   Section  1.  Paragraph c of subdivision 6 of section 243 of the public
 health law, as added by chapter 684 of the laws of 2023, is  amended  to
 read as follows:
   c.  The  council  shall consider the feasibility of the following, AND
 NOTWITHSTANDING THE FINDINGS, SHALL ISSUE MANDATES TO  THE  COMMISSIONER
 FOR:
   (i)  the  establishment  of  a statewide public education and outreach
 campaign to publicize evidence  based  sickle  cell  disease  screening,
 detection  and  education  services. The campaign shall include: general
 community  education,  outreach  to  specific  underserved  populations,
 evidence  based  clinical sickle cell disease screening services, and an
 informational summary that shall include an explanation  of  the  impor-
 tance  of clinical examinations and what to expect during clinical exam-
 inations and sickle cell disease screening services;
   (ii) the provision of grants to approved organizations;
   (iii) the compilation of  data  concerning  sickle  cell  disease  and
 dissemination of such data to the public; [and]
   (iv)  the  development  of health care professional education programs
 including the benefits of early detection of  sickle  cell  disease  and
 clinical  examinations,  the  recommended frequency of clinical examina-
 tions and sickle cell disease  screening  services,  and  professionally
 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
 
              

   (V) THE ESTABLISHMENT OF REGIONAL SICKLE CELL CENTERS TO PROVIDE TEAM-
 BASED,  INTEGRATED  CARE INCLUDING PAIN MANAGEMENT, MENTAL HEALTH, TRAIT
 TESTING, AND GENETIC COUNSELING;
   (VI)  THE  IMPLEMENTATION  OF  WORKFORCE  DEVELOPMENT  IN  PRIMARY AND
 SPECIALTY CARE WITH A FOCUS ON SICKLE CELL DISEASE; AND
   (VII) THE SUPPORT OF LONG-TERM SURVEILLANCE  OF  SICKLE  CELL  DISEASE
 COMPLICATIONS, MORTALITY, HEALTH SERVICES UTILIZATION, AND COST THROUGH-
 OUT  THE  LIFESPAN  OF  SICKLE CELL DISEASE PATIENTS TO UNDERSTAND WHICH
 POPULATIONS ARE MOST VULNERABLE AND IDENTIFY EMERGING TRENDS FOR ACTION.
   § 2. Subdivision 1 of section 206 of the public health law is  amended
 by adding a new paragraph (x) to read as follows:
   (X)  CONSIDER, ADHERE TO, AND ACT UPON ALL ADVICE, RECOMMENDATIONS AND
 MANDATES PROVIDED BY THE HEALTH EQUITY COUNCIL PURSUANT  TO  SUBDIVISION
 SIX OF SECTION TWO HUNDRED FORTY-THREE OF THIS ARTICLE.
   § 3. This act shall take effect immediately.