S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   1839
 
                        2023-2024 Regular Sessions
 
                             I N  S E N A T E
 
                             January 17, 2023
                                ___________
 
 Introduced  by  Sens. SANDERS, BROUK, CLEARE, COMRIE, GIANARIS, JACKSON,
   KENNEDY, KRUEGER, MAYER, MYRIE, SEPULVEDA, SKOUFIS -- 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 creating the sick-
   le cell disease detection and education program

   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 I-C
            SICKLE CELL DISEASE DETECTION AND EDUCATION PROGRAM
 SECTION 2415. SICKLE  CELL  DISEASE  DETECTION  AND  EDUCATION  PROGRAM;
                 ESTABLISHMENT.
         2416. GRANTS TO APPROVED ORGANIZATIONS.
         2417. GRANTS TO COMMUNITY-BASED ORGANIZATIONS.
         2418. ANNUAL REPORT.
         2419. ADVISORY COUNCIL.
   §  2415.  SICKLE  CELL DISEASE DETECTION AND EDUCATION PROGRAM; ESTAB-
 LISHMENT. 1. THERE IS HEREBY CREATED WITHIN THE  DEPARTMENT  THE  SICKLE
 CELL  DISEASE  DETECTION AND EDUCATION PROGRAM, HEREAFTER REFERRED TO IN
 THIS TITLE AS  THE  "SICKLE  CELL  DISEASE  SERVICES  PROGRAM"  OR  "THE
 PROGRAM",  TO  PROMOTE  SCREENING  AND DETECTION OF SICKLE CELL DISEASE,
 ESPECIALLY AMONG UNSERVED OR UNDERSERVED  POPULATIONS;  TO  EDUCATE  THE
 PUBLIC   REGARDING  SICKLE  CELL  DISEASE  AND  THE  BENEFITS  OF  EARLY
 DETECTION; AND TO PROVIDE COUNSELING AND REFERRAL SERVICES. FOR PURPOSES
 OF THIS TITLE, "UNSERVED OR UNDERSERVED POPULATIONS" MEANS PEOPLE HAVING
 INADEQUATE ACCESS AND FINANCIAL RESOURCES TO OBTAIN SICKLE CELL  DISEASE
 SCREENING  AND  DETECTION  SERVICES,  INCLUDING  PEOPLE  WHO LACK HEALTH
 COVERAGE OR WHOSE HEALTH COVERAGE IS INADEQUATE OR WHO CANNOT  MEET  THE
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
                                                            LBD05973-01-3
 S. 1839                             2
              

 
 FINANCIAL   REQUIREMENTS  OF  THEIR  COVERAGE  FOR  ACCESSING  DETECTION
 SERVICES.
   2. THE PROGRAM SHALL INCLUDE:
   (A)  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;
   (B) PROVISION OF GRANTS TO APPROVED ORGANIZATIONS UNDER SECTIONS TWEN-
 TY-FOUR HUNDRED SIXTEEN AND TWENTY-FOUR HUNDRED SEVENTEEN OF THIS TITLE;
   (C) COMPILATION OF DATA CONCERNING THE PROGRAM  AND  DISSEMINATION  OF
 SUCH DATA TO THE PUBLIC; AND
   (D) DEVELOPMENT OF HEALTH CARE PROFESSIONAL EDUCATION PROGRAMS INCLUD-
 ING  THE BENEFITS OF EARLY DETECTION OF SICKLE CELL DISEASE AND CLINICAL
 EXAMINATIONS, THE RECOMMENDED FREQUENCY  OF  CLINICAL  EXAMINATIONS  AND
 SICKLE  CELL  DISEASE  SCREENING SERVICES, AND PROFESSIONALLY RECOGNIZED
 BEST PRACTICES GUIDELINES.
   § 2416. GRANTS TO APPROVED ORGANIZATIONS. 1.  THE  COMMISSIONER  SHALL
 MAKE  GRANTS  WITHIN  THE AMOUNTS APPROPRIATED TO APPROVED ORGANIZATIONS
 FOR THE PROVISION OF SERVICES RELATING TO THE EVIDENCE  BASED  SCREENING
 AND  DETECTION  OF  SICKLE  CELL  DISEASE  AS  PART OF THIS PROGRAM. THE
 SERVICES SHALL INCLUDE BUT NOT BE LIMITED TO:
   (A) PROMOTION AND PROVISION OF EARLY DETECTION OF SICKLE CELL DISEASE,
 INCLUDING  CLINICAL  EXAMINATIONS  AND  SICKLE  CELL  DISEASE  SCREENING
 SERVICES;
   (B)  PROVISION  OF COUNSELING AND INFORMATION ON TREATMENT OPTIONS AND
 REFERRAL FOR APPROPRIATE MEDICAL TREATMENT;
   (C) DISSEMINATION OF INFORMATION TO  UNSERVED  AND  UNDERSERVED  POPU-
 LATIONS, TO THE GENERAL PUBLIC AND TO HEALTH CARE PROFESSIONALS CONCERN-
 ING  SICKLE CELL DISEASE, THE BENEFITS OF EARLY DETECTION AND TREATMENT,
 AND THE AVAILABILITY OF SICKLE CELL DISEASE SCREENING SERVICES;
   (D) IDENTIFICATION OF LOCAL SICKLE  CELL  DISEASE  SCREENING  SERVICES
 WITHIN THE APPROVED ORGANIZATION'S REGION;
   (E)  PROVISION  OF  INFORMATION,  COUNSELING  AND REFERRAL SERVICES TO
 INDIVIDUALS DIAGNOSED WITH SICKLE CELL DISEASE; AND
   (F) PROVISION OF INFORMATION REGARDING  THE  AVAILABILITY  OF  MEDICAL
 ASSISTANCE,  INCLUDING  MEDICAL ASSISTANCE UNDER TITLE ELEVEN OF ARTICLE
 FIVE OF THE SOCIAL SERVICES LAW, TO AN INDIVIDUAL WHO REQUIRES TREATMENT
 FOR SICKLE CELL DISEASE.
   2. THE COMMISSIONER SHALL  GIVE  NOTICE  AND  PROVIDE  OPPORTUNITY  TO
 SUBMIT APPLICATIONS FOR GRANTS UNDER THE PROGRAM. IN ORDER TO BE CONSID-
 ERED  FOR  A  GRANT,  AN  APPLICANT MUST SHOW EVIDENCE OF THE FOLLOWING,
 RELATING TO THE SERVICES THE APPLICANT PROPOSES TO PROVIDE:
   (A) ABILITY TO PROVIDE AND TO ENSURE CONSISTENT AND  QUALITY  SERVICES
 UNDER THE PROGRAM;
   (B) EXPERTISE IN PROVIDING THE SERVICE;
   (C)  CAPACITY  TO  COORDINATE  SERVICES WITH PHYSICIANS, HOSPITALS AND
 OTHER APPROPRIATE LOCAL INSTITUTIONS OR AGENCIES;
   (D) ABILITY TO PROVIDE THE SERVICE TO UNSERVED  OR  UNDERSERVED  POPU-
 LATIONS; AND
   (E)  ABILITY  TO  PROVIDE THE SERVICE IN ACCORDANCE WITH THE STANDARDS
 SPECIFIED IN SUBDIVISION THREE OF THIS SECTION.
   APPLICATIONS SHALL BE MADE ON FORMS PROVIDED BY THE COMMISSIONER.
 S. 1839                             3
 
   3. THE COMMISSIONER SHALL DEVELOP STANDARDS FOR THE IMPLEMENTATION  OF
 GRANTS  UNDER  THE PROGRAM BY APPROVED ORGANIZATIONS, WHICH SHALL ENSURE
 THE FOLLOWING:
   (A) INTEGRATION OF THE APPROVED ORGANIZATION WITH EXISTING HEALTH CARE
 PROVIDERS;
   (B) MAXIMIZING THIRD PARTY REIMBURSEMENT;
   (C) PROVISION OF SERVICES TO UNSERVED OR UNDERSERVED POPULATIONS.
   4.  WITHIN  THE AMOUNTS OF STATE OR FEDERAL FUNDS APPROPRIATED FOR THE
 PROGRAM, APPROVED ORGANIZATIONS MAY BE AUTHORIZED BY THE  DEPARTMENT  TO
 PROVIDE SUCH SERVICES FOR POPULATIONS SERVED UNDER THIS TITLE.  SERVICES
 MAY  INCLUDE  EVIDENCE  BASED  SCREENING, PATIENT EDUCATION, COUNSELING,
 FOLLOW-UP AND REFERRAL.
   § 2417. GRANTS TO COMMUNITY-BASED ORGANIZATIONS. 1.  THE  COMMISSIONER
 SHALL MAKE GRANTS WITHIN AMOUNTS APPROPRIATED FOR COMMUNITY-BASED ORGAN-
 IZATIONS  TO  PROVIDE  POST DIAGNOSIS COUNSELING, EDUCATION AND OUTREACH
 PROGRAMS FOR PERSONS DIAGNOSED  WITH  SICKLE  CELL  DISEASE  BASED  UPON
 CRITERIA TO BE DEVELOPED BY THE COMMISSIONER.
   2.  FOR  THE PURPOSES OF THIS SECTION, "COMMUNITY-BASED ORGANIZATIONS"
 SHALL MEAN FREE-STANDING ORGANIZATIONS  IN  WHICH  SICKLE  CELL  DISEASE
 SURVIVORS  HOLD  SIGNIFICANT  DECISION-MAKING  RESPONSIBILITY, AND WHICH
 OFFER A BROAD  RANGE  OF  SICKLE  CELL  DISEASE  EDUCATION  AND  SUPPORT
 SERVICES FREE OF CHARGE.
   3.  THE COMMISSIONER SHALL PROVIDE NOTICE AND OPPORTUNITY FOR COMMUNI-
 TY-BASED ORGANIZATIONS TO SUBMIT APPLICATIONS TO PROVIDE  POST-DIAGNOSIS
 SICKLE  CELL  DISEASE  COUNSELING, EDUCATION AND OUTREACH PROGRAMS. SUCH
 APPLICATIONS SHALL BE ON FORMS ESTABLISHED BY THE COMMISSIONER.
   4. EVERY ORGANIZATION RECEIVING GRANTS UNDER THIS TITLE  SHALL  SUBMIT
 TO  THE  COMMISSIONER, ON OR BEFORE OCTOBER FIRST OF EACH YEAR, A REPORT
 OF SUCH ORGANIZATION'S ACTIVITIES, INCLUDING AN ASSESSMENT OF THE ORGAN-
 IZATION'S PROGRAMS AND SUCH DATA AS THE COMMISSIONER DEEMS RELEVANT  AND
 NECESSARY TO ACCOMPLISH THE PURPOSES OF THE PROGRAM.
   §  2418.  ANNUAL  REPORT.  THE  COMMISSIONER SHALL SUBMIT ON OR BEFORE
 DECEMBER FIRST OF EACH YEAR, AN ANNUAL REPORT TO THE  GOVERNOR  AND  THE
 LEGISLATURE  CONCERNING  THE OPERATION OF THE PROGRAM. THE REPORTS SHALL
 INCLUDE THE EXPERIENCE OF THE PROGRAM IN PROVIDING SERVICES  UNDER  THIS
 TITLE.  THE ANNUAL REPORT SHALL INCLUDE STRATEGIES FOR IMPLEMENTATION OF
 THE SICKLE CELL DISEASE AWARENESS PROGRAM AND FOR PROMOTING  THE  AWARE-
 NESS  PROGRAM  TO THE GENERAL PUBLIC, STATE AND LOCAL ELECTED OFFICIALS,
 AND VARIOUS PUBLIC AND PRIVATE ORGANIZATIONS, ASSOCIATIONS,  BUSINESSES,
 INDUSTRIES,  AND  AGENCIES.  ORGANIZATIONS  RECEIVING  GRANTS UNDER THIS
 TITLE SHALL PROVIDE DATA AND ASSESSMENTS AS THE COMMISSIONER MAY REQUIRE
 FOR THE REPORT. THE REPORT SHALL INCLUDE ANY RECOMMENDATIONS  FOR  ADDI-
 TIONAL ACTION TO RESPOND TO THE INCIDENCE OF SICKLE CELL DISEASE IN THIS
 STATE.
   §  2419.  ADVISORY  COUNCIL.  1.  THERE  IS  HEREBY ESTABLISHED IN THE
 DEPARTMENT THE SICKLE CELL DISEASE DETECTION AND EDUCATION PROGRAM ADVI-
 SORY COUNCIL, FOR THE PURPOSE OF ADVISING THE COMMISSIONER  WITH  REGARD
 TO THE PROGRAM.
   2.  THE  ADVISORY COUNCIL SHALL ADVISE AND MAKE RECOMMENDATIONS TO THE
 COMMISSIONER REGARDING THE  PROMOTION  AND  IMPLEMENTATION  OF  PROGRAMS
 UNDER THIS TITLE.
   3.  THE  COMMISSIONER  SHALL  APPOINT TWENTY-ONE VOTING MEMBERS OF THE
 ADVISORY COUNCIL, WHICH SHALL  INCLUDE  REPRESENTATION  OF  HEALTH  CARE
 PROFESSIONALS,  CONSUMERS, PATIENTS, WITH ONE VOTING MEMBER WHO SHALL BE
 A PERSON WHO HAS OR HAS HAD SICKLE CELL DISEASE. THE COMMISSIONER  SHALL
 APPOINT  ONE  MEMBER  AS A CHAIRPERSON. THE MEMBERS OF THE COUNCIL SHALL
 S. 1839                             4
 
 RECEIVE NO COMPENSATION FOR THEIR SERVICES, BUT SHALL BE  ALLOWED  THEIR
 ACTUAL AND NECESSARY EXPENSES INCURRED IN PERFORMANCE OF THEIR DUTIES.
   4.  A  MAJORITY  OF THE APPOINTED VOTING MEMBERSHIP OF THE BOARD SHALL
 CONSTITUTE A QUORUM.
   5. THE ADVISORY COUNCIL SHALL MEET AT  LEAST  TWICE  A  YEAR,  AT  THE
 REQUEST OF THE DEPARTMENT.
   §  2. Subdivision 1 of section 207 of the public health law is amended
 by adding a new paragraph (r) to read as follows:
   (R) SICKLE CELL  DISEASE  INCLUDING  BUT  NOT  LIMITED  TO  SCREENING,
 PREVENTION,  AND  TREATMENT  INFORMATION.  THE  PROGRAM SHALL INCLUDE AN
 ADVISORY COUNCIL UNDER THIS SECTION THAT  SHALL  INCLUDE  PATIENTS  WITH
 SICKLE  CELL  DISEASE  AND  THEIR  FAMILIES  AND  HEALTH  CARE PROVIDERS
 SPECIALIZING IN TREATING SICKLE CELL DISEASE, AMONG OTHERS.
   § 3. This act shall take effect immediately.