S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   9724
 
                             I N  S E N A T E
 
                               May 23, 2024
                                ___________
 
 Introduced  by  Sen. PERSAUD -- 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  establishing  the
   rare disease advisory council
 
   THE  PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
 BLY, DO ENACT AS FOLLOWS:

   Section 1. Title 2-F of the public health law is amended by  adding  a
 new section 245 to read as follows:
   §  245.  RARE  DISEASE  ADVISORY  COUNCIL. 1. FOR THE PURPOSES OF THIS
 SECTION, "RARE DISEASE" MEANS A CONDITION OR DISEASE THAT  IS  CURRENTLY
 OR  HAS  BEEN  SUBJECT TO A RESEARCH STUDY BY THE NATIONAL INSTITUTES OF
 HEALTH RARE DISEASES CLINICAL RESEARCH NETWORK OR AFFECTS FEWER THAN TWO
 HUNDRED THOUSAND UNITED STATES RESIDENTS PER YEAR.
   2. A. THERE SHALL BE ESTABLISHED WITHIN THE DEPARTMENT A RARE  DISEASE
 ADVISORY  COUNCIL  TO IDENTIFY BEST PRACTICES, RAISE AWARENESS REGARDING
 RARE DISEASES, EVALUATE BARRIERS TO ACCESS TO CARE, AND TO  MAKE  RECOM-
 MENDATIONS TO THE LEGISLATURE AND THE GOVERNOR.
   B.  AN EXISTING BODY OR PREVIOUSLY CONVENED BODY, WHETHER DISSOLVED OR
 NOT, MAY BE REPURPOSED TO MEET THE REQUIREMENTS OF THIS SECTION.
   3. THE COUNCIL SHALL CONSIST OF FIFTEEN MEMBERS, INCLUDING THE COMMIS-
 SIONER OR SUCH COMMISSIONER'S DESIGNEE, THE SUPERINTENDENT OF  FINANCIAL
 SERVICES  OR  SUCH  SUPERINTENDENT'S  DESIGNEE,  AND  NINE MEMBERS TO BE
 APPOINTED BY THE GOVERNOR. TWO MEMBERS SHALL BE APPOINTED BY THE SPEAKER
 OF THE ASSEMBLY, TWO MEMBERS SHALL BE APPOINTED BY THE TEMPORARY  PRESI-
 DENT  OF  THE SENATE.  MEMBERSHIP OF SUCH COUNCIL SHALL CONSIST OF RESI-
 DENTS OF THE STATE OF NEW YORK AND INCLUDE, BUT NOT BE LIMITED TO, INDI-
 VIDUALS WITH EXPERTISE IN RARE DISEASES,  INCLUDING  PHYSICIANS,  NURSES
 AND  OTHER  HEALTH CARE PROFESSIONALS WITH EXPERIENCE RESEARCHING, DIAG-
 NOSING OR TREATING RARE DISEASES; MEMBERS OF  THE  SCIENTIFIC  COMMUNITY
 ENGAGED IN RARE DISEASE RESEARCH; REPRESENTATIVES FROM THE HEALTH INSUR-
 ANCE  INDUSTRY;  A REPRESENTATIVE OF THE BIOPHARMA INDUSTRY; INDIVIDUALS
 WHO HAVE A RARE DISEASE AND CAREGIVERS OF A PERSON WITH A RARE  DISEASE;
 AND  REPRESENTATIVES  OF RARE DISEASE PATIENT ORGANIZATIONS. THE MEMBERS
 OF THE RARE DISEASE ADVISORY COUNCIL SHALL RECEIVE NO  COMPENSATION  FOR
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
              

                                                            LBD15543-03-4
 S. 9724                             2
 
 SUCH  MEMBER'S  ROLE  ON  THE  COUNCIL,  BUT  SHALL  BE ALLOWED FOR SUCH
 MEMBER'S ACTUAL AND NECESSARY EXPENSES INCURRED IN  THE  PERFORMANCE  OF
 SUCH  MEMBER'S  DUTIES  AS  COUNCIL MEMBERS. TIME SERVED ON A PREVIOUSLY
 CONVENED  BODY SHALL NOT COUNT TOWARDS THE TERM OF OFFICE FOR MEMBERSHIP
 ON THE RARE DISEASE ADVISORY COUNCIL.
   4. A. COUNCIL MEMBERS SHALL SERVE UP TO TWO FOUR YEAR TERMS COMMENCING
 FROM THE DATE OF THEIR APPOINTMENT. MEMBERS MAY SERVE BEYOND THEIR  TERM
 EXPIRATION AT THE PLEASURE OF THE APPOINTING AUTHORITY.
   B. IF A VACANCY OCCURS FOR AN UNEXPIRED TERM, THE COUNCIL, BY A MAJOR-
 ITY  VOTE,  SHALL FILL SUCH VACANCY IN A TIMELY MANNER AND IN COMPLIANCE
 WITH THE REQUIREMENTS SET FORTH IN SUBDIVISION THREE OF THIS SECTION.
   C. THE COUNCIL SHALL ANNUALLY ELECT A CHAIR FROM AMONGST ITS  MEMBERS.
 A CHAIR IS ELIGIBLE FOR REELECTION.
   5.  A.  THE  INITIAL  MEETING OF THE COUNCIL SHALL OCCUR WITHIN NINETY
 DAYS AFTER THE EFFECTIVE DATE OF THIS SECTION. THE COUNCIL SHALL MEET AT
 LEAST ONCE PER QUARTER IN PERSON OR VIA AN ONLINE  MEETING  PLATFORM  AS
 DETERMINED  BY  THE CHAIR. SUCH MEETINGS SHALL COMPLY WITH ARTICLE SEVEN
 OF THE PUBLIC OFFICERS LAW.
   B. THE COUNCIL SHALL PROVIDE OPPORTUNITIES  FOR  THE  PUBLIC  TO  HAVE
 UPDATES  AND  PROVIDE  PUBLIC  COMMENT  AND CREATE AND MAINTAIN A PUBLIC
 WEBSITE OR UTILIZE AN EXISTING WEBSITE WHERE MEETING MINUTES, NOTICES OF
 UPCOMING MEETINGS, AND PUBLIC COMMENTS CAN BE SUBMITTED.
   6. THE COUNCIL'S FOCUS SHALL INCLUDE, BUT NOT BE LIMITED TO:
   A. IDENTIFYING BEST PRACTICES THAT COULD IMPROVE THE AWARENESS OF RARE
 DISEASES AND REFERRING PEOPLE WITH RARE DISEASES TO SPECIALISTS;
   B. EVALUATING BARRIERS TO TREATMENT, INCLUDING FINANCIAL  BARRIERS  ON
 ACCESS TO CARE;
   C. ESTABLISHING BEST PRACTICES AND PROTOCOLS TO INCLUDE IN STATE PLAN-
 NING  RELATED  TO  NATURAL DISASTERS, PUBLIC HEALTH EMERGENCIES OR OTHER
 EMERGENCY DECLARATIONS TO ENABLE THE CONTINUITY OF CARE FOR RARE DISEASE
 PATIENTS AND ENSURE SAFEGUARDS AGAINST DISCRIMINATION FOR  RARE  DISEASE
 PATIENTS ARE IN PLACE;
   D.   CONVENING  PUBLIC  HEARINGS,  MAKING  INQUIRIES,  AND  SOLICITING
 COMMENTS FROM THE GENERAL PUBLIC IN THE STATE TO ASSIST THE COUNCIL WITH
 A FIRST-YEAR LANDSCAPE OR SURVEY OF THE NEEDS OF RARE DISEASE  PATIENTS,
 CAREGIVERS, AND PROVIDERS IN THE STATE;
   E.  PROVIDING  TESTIMONY AND COMMENTS ON PENDING LEGISLATION AND REGU-
 LATIONS BEFORE THE LEGISLATURE AND OTHER STATE AGENCIES THAT IMPACT  NEW
 YORK'S RARE DISEASE COMMUNITY;
   F.  CONSULTING  WITH EXPERTS ON RARE DISEASES TO DEVELOP POLICY RECOM-
 MENDATIONS TO IMPROVE PATIENT ACCESS TO, AND QUALITY  OF,  RARE  DISEASE
 SPECIALISTS, AFFORDABLE AND COMPREHENSIVE HEALTH CARE COVERAGE, RELEVANT
 DIAGNOSTICS, TIMELY TREATMENT, AND OTHER NEEDED SERVICES; AND
   G.  ANY OTHER PRIORITIES AS IDENTIFIED BY THE DEPARTMENT OR A MAJORITY
 OF THE COUNCIL.
   7. A. THE COUNCIL, IN CONSULTATION WITH THE DEPARTMENT SHALL PREPARE A
 WRITTEN REPORT SUMMARIZING ITS FINDINGS  AND  RECOMMENDATIONS  FROM  THE
 COUNCIL  WHICH  SHALL  INCLUDE  A  LIST OF EXISTING, PUBLICLY ACCESSIBLE
 RESOURCES ON RESEARCH, DIAGNOSIS, TREATMENT, COVERAGE OPTIONS AND EDUCA-
 TION RELATING TO RARE DISEASES.
   B. THIS REPORT SHALL BE SUBMITTED TO THE GOVERNOR, THE SPEAKER OF  THE
 ASSEMBLY,  THE  MINORITY LEADER OF THE ASSEMBLY, THE TEMPORARY PRESIDENT
 OF THE SENATE, THE MINORITY LEADER OF THE SENATE, THE  SENATE  CHAIR  OF
 THE  COMMITTEE  ON  HEALTH,  AND  THE CHAIR OF THE ASSEMBLY COMMITTEE ON
 HEALTH, ONE YEAR FOLLOWING THE EFFECTIVE DATE OF  THIS  SECTION  AND  BY
 S. 9724                             3

 EACH  JANUARY  THIRTIETH  THEREAFTER  AND SHALL BE POSTED ON THE DEPART-
 MENT'S WEBSITE.
   8. THE COUNCIL MAY IDENTIFY PUBLIC, PRIVATE, AND OTHER AVAILABLE FUND-
 ING SOURCES AND MAY ACCEPT AND UTILIZE FUNDS FROM SUCH SOURCES TO IMPLE-
 MENT  THE  PROVISIONS  OF  THIS  SECTION, INCLUDING, BUT NOT LIMITED TO,
 STATE FUNDS APPROPRIATED FOR RARE DISEASE  RESEARCH,  TREATMENT,  EDUCA-
 TION, PROGRAMMING, AND RELATED ACTIVITIES.
   §  2.  This  act shall take effect on the thirtieth 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.