S T A T E O F N E W Y O R K
________________________________________________________________________
5605--B
2021-2022 Regular Sessions
I N S E N A T E
March 12, 2021
___________
Introduced by Sens. SANDERS, BROOKS, COMRIE, GIANARIS, JACKSON, KENNEDY,
KRUEGER, MAYER, MYRIE, RAMOS, SEPULVEDA, SKOUFIS -- read twice and
ordered printed, and when printed to be committed to the Committee on
Health -- committee discharged, bill amended, ordered reprinted as
amended and recommitted to said committee -- recommitted to the
Committee on Health in accordance with Senate Rule 6, sec. 8 --
committee discharged, bill amended, ordered reprinted as amended and
recommitted to said committee
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
EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
[ ] is old law to be omitted.
LBD08538-06-2
S. 5605--B 2
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
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
S. 5605--B 3
(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.
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
S. 5605--B 4
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
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 (q) to read as follows:
(Q) 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.
