S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   5873
 
                        2025-2026 Regular Sessions
 
                           I N  A S S E M B L Y
 
                             February 24, 2025
                                ___________
 
 Introduced  by M. of A. JACKSON -- read once and referred to the Commit-
   tee on Health
 
 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
 
   THE  PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
 BLY, DO ENACT AS FOLLOWS:
 
   Section 1. Article 24 of the public health law is amended by adding  a
 new title 1-C to read as follows:
                                  TITLE 1-C
                            SICKLE CELL DISEASE
 
 SECTION 2415. SICKLE CELL DISEASE DETECTION AND EDUCATION.
         2416. SICKLE CELL DISEASE REGISTRY.
         2417. ANNUAL REPORTS.
   § 2415. SICKLE CELL DISEASE DETECTION AND EDUCATION. 1. WHEN AN INFANT
 OR  CHILD  TESTED  FOR SICKLE CELL DISEASE, EITHER UNDER SECTION TWENTY-
 FIVE HUNDRED-A OF THIS CHAPTER OR FOR ANY OTHER  PURPOSE,  IS  FOUND  TO
 HAVE  SUCH  DISEASE, THE ENTITY WHICH PERFORMED THE TESTING SHALL NOTIFY
 THE ADMINISTRATIVE OFFICER OR OTHER PERSON IN CHARGE OF THE  INSTITUTION
 CARING  FOR  THE INFANT OR CHILD AND DOCUMENT THE FINDINGS TO THE SICKLE
 CELL DISEASE REGISTRY  ESTABLISHED  UNDER  SECTION  TWENTY-FOUR  HUNDRED
 SIXTEEN  OF  THIS  TITLE. SUCH ADMINISTRATIVE OFFICER OR OTHER PERSON IN
 CHARGE OF THE INSTITUTION CARING FOR THE INFANT OR CHILD UPON  RECEIVING
 SUCH  NOTIFICATION  SHALL INFORM THE PHYSICIAN CARING FOR SUCH INFANT OR
 CHILD AND PROVIDE THE PARENTS OF SUCH CHILD WITH  EDUCATIONAL  PAMPHLETS
 CREATED BY THE DEPARTMENT CONCERNING SICKLE CELL DISEASE. SUCH PAMPHLETS
 SHALL INCLUDE, BUT NOT BE LIMITED TO:
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
                                                            LBD03440-01-5
              

 A. 5873                             2
 
   (A) THE AVAILABILITY AND BENEFITS OF GENETIC COUNSELING PERFORMED BY A
 LICENSED GENETIC COUNSELOR.
   (B)  INFORMATION  CONCERNING  THE FACT THAT ONE OR BOTH OF THE PARENTS
 CARRIES SICKLE CELL TRAIT AND THE RISK THAT OTHER CHILDREN BORN  TO  THE
 PARENTS  MAY  CARRY  SICKLE  CELL  TRAIT OR MAY BE BORN WITH SICKLE CELL
 DISEASE.
   (C)  INFORMATION  ABOUT  COUNSELING,  INTERVENTION,  AND   EDUCATIONAL
 SERVICES.
   2. WHEN A PERSON IS DIAGNOSED WITH SICKLE CELL DISEASE, THE DIAGNOSING
 PHYSICIAN  SHALL DOCUMENT THE FINDINGS TO THE SICKLE CELL DISEASE REGIS-
 TRY ESTABLISHED UNDER SECTION TWENTY-FOUR HUNDRED SIXTEEN OF THIS  TITLE
 AND  PROVIDE  SUCH  PERSON  WITH  EDUCATIONAL  PAMPHLETS  CREATED BY THE
 DEPARTMENT CONCERNING SICKLE CELL DISEASE. SUCH PAMPHLETS SHALL INCLUDE,
 BUT NOT BE LIMITED TO:
   (A) THE AVAILABILITY AND BENEFITS OF GENETIC COUNSELING PERFORMED BY A
 LICENSED GENETIC COUNSELOR.
   (B) INFORMATION CONCERNING THE FACT THAT ONE OR BOTH OF THE PARENTS OF
 SOMEONE WITH SICKLE CELL DISEASE CARRIES THE SICKLE CELL TRAIT  AND  THE
 RISK  THAT  CHILDREN BORN TO SUCH PARENTS MAY CARRY SICKLE CELL TRAIT OR
 MAY BE BORN WITH SICKLE CELL DISEASE.
   (C)  INFORMATION  ABOUT  COUNSELING,  INTERVENTION,  AND   EDUCATIONAL
 SERVICES.
   3. INFORMATION PROVIDED TO THE SICKLE CELL DISEASE REGISTRY UNDER THIS
 SECTION  SHALL  BE  PROVIDED  IN  THE  FORM AND MANNER PRESCRIBED BY THE
 DEPARTMENT.
   § 2416. SICKLE CELL DISEASE REGISTRY.  1.  THE  DEPARTMENT  OF  HEALTH
 SHALL  ESTABLISH A SICKLE CELL DISEASE REGISTRY, HEREINAFTER REFERRED TO
 AS THE "REGISTRY", WHICH SHALL CONSIST OF:
   (A) A RECORD OF INDIVIDUALS IN THIS STATE WHO HAVE BEEN DIAGNOSED WITH
 SICKLE CELL TRAIT.
   (B) ANY OTHER INFORMATION REGARDING INDIVIDUALS WHO  HAVE  BEEN  DIAG-
 NOSED  WITH  SICKLE CELL TRAIT THAT THE COMMISSIONER CONSIDERS NECESSARY
 AND APPROPRIATE FOR INCLUSION ON THE REGISTRY.
   (C) EDUCATIONAL MATERIALS AND TRAINING MATERIALS AND PROGRAMS FOR BOTH
 THE PUBLIC AND HEALTHCARE PROVIDERS.
   2. THE REGISTRY SHALL:
   (A) PROVIDE INFORMATION TO PERSONS DIAGNOSED WITH SICKLE CELL  DISEASE
 AND,  WHERE  SUCH  PERSON  IS  UNDER  THE AGE OF EIGHTEEN, SUCH PERSON'S
 PARENTS ABOUT COUNSELING, INTERVENTION, AND EDUCATIONAL SERVICES.
   (B) NOTIFY THE PARENTS OF PATIENTS WHO ARE LISTED IN THE REGISTRY THAT
 FOLLOW-UP CONSULTATIONS WITH A PHYSICIAN MAY BE BENEFICIAL FOR  CHILDREN
 DIAGNOSED WITH SICKLE CELL TRAIT. SUCH NOTIFICATIONS SHALL OCCUR: (I) AT
 LEAST  ONCE  WHEN  THE PATIENT IS IN EARLY ADOLESCENCE, WHEN THE PATIENT
 MAY BEGIN TO PARTICIPATE IN STRENUOUS  ATHLETIC  ACTIVITIES  THAT  COULD
 RESULT  IN ADVERSE SYMPTOMS FOR A PERSON WITH SICKLE CELL TRAIT; (II) AT
 LEAST ONCE DURING LATER ADOLESCENCE, WHEN THE  PATIENT  SHOULD  BE  MADE
 AWARE  OF  THE REPRODUCTIVE IMPLICATIONS OF SICKLE CELL TRAIT; AND (III)
 AT SUCH OTHER INTERVALS AS MAY BE REQUIRED BY THE COMMISSIONER.
   (C) NOTIFY REGISTERED PERSONS UPON REACHING THE AGE OF  EIGHTEEN  THAT
 SUCH  PERSON  HAS  SICKLE  CELL DISEASE AND ANY INFORMATION THE REGISTRY
 PROVIDES PERSONS UPON BEING FIRST DIAGNOSED WITH SICKLE CELL DISEASE.
   (D) IN COLLABORATION WITH EXPERTS, DEVELOP A SURVEILLANCE  AND  PUBLIC
 AWARENESS CAMPAIGN REGARDING THE IMPORTANCE OF KNOWING ONE'S SICKLE CELL
 TRAIT STATUS AND TO GAIN KNOWLEDGE ON SICKLE CELL DISEASE FOR ALL RACIAL
 AND  ETHNIC  GROUPS IN NEW YORK STATE. SUCH CAMPAIGN SHALL ENCOURAGE THE
 MEDICAL COMMUNITY, IN CO-ORDINATION WITH  LOCAL  GOVERNMENTS  AND  OTHER
 A. 5873                             3
 
 STATE ENTITIES, TO WORK TO ENSURE THAT ALL INDIVIDUALS ARE MADE AWARE OF
 THEIR  SICKLE  CELL  TRAIT  STATUS  BY  DEVELOPING A COMMON STRATEGY FOR
 DISSEMINATION OF SCREENING RESULTS, EDUCATION,  AND  COUNSELING  TO  ALL
 UNSERVED AND UNDERSERVED AT RISK MEMBERS OF THE POPULATION.
   (E)  PUBLISH  ON  THE  DEPARTMENT'S  WEBSITE EDUCATIONAL MATERIALS AND
 TRAINING MATERIALS AND PROGRAMS  FOR  BOTH  THE  PUBLIC  AND  HEALTHCARE
 PROVIDERS.
   3.  TO  FACILITATE  THE  OPERATIONS  OF THE REGISTRY, THE COMMISSIONER
 SHALL DEVELOP GUIDELINES TO:
   (A) OBTAIN INFORMATION REGARDING  INDIVIDUALS  DIAGNOSED  WITH  SICKLE
 CELL TRAIT FROM HEALTH CARE FACILITIES.
   (B)  PROTECT THE CONFIDENTIALITY OF THE INDIVIDUALS IN ACCORDANCE WITH
 THE HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT OF 1996.
   (C) ENSURE THAT THE REGISTRY IS DEVELOPED IN A MANNER CONSISTENT  WITH
 THE HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT OF 1996 (PUB. L.
 NO.   104-191), REGULATIONS ADOPTED UNDER THAT ACT, AND OTHER APPLICABLE
 LAWS AND REGULATIONS GOVERNING DISCLOSURE OF HEALTH INFORMATION.
   4. PHYSICIANS LICENSED UNDER ARTICLE ONE  HUNDRED  THIRTY-ONE  OF  THE
 EDUCATION  LAW  SHALL  ATTEND BI-ANNUAL CONTINUING EDUCATION TRAINING BY
 THE REGISTRY. THE REGISTRY SHALL REVISE MEDICAL SCHOOL CURRICULUM ON THE
 RELATED EFFECTS OF SICKLE CELL TRAIT AS WELL AS SICKLE CELL DISEASE.
   § 2417. ANNUAL REPORTS. ON OR BEFORE THE FIRST DAY  OF  FEBRUARY  EACH
 YEAR, THE COMMISSIONER SHALL PROVIDE A WRITTEN REPORT ON THE INFORMATION
 OBTAINED  UNDER  THIS  TITLE  TO  THE TEMPORARY PRESIDENT OF THE SENATE,
 SPEAKER OF THE ASSEMBLY, CHAIR OF THE SENATE FINANCE COMMITTEE, CHAIR OF
 THE ASSEMBLY WAYS AND MEANS COMMITTEE, CHAIR OF THE SENATE COMMITTEE  ON
 HEALTH, CHAIR OF THE ASSEMBLY HEALTH COMMITTEE AND THE PUBLIC.
   §  2.  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.