S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                 10292--A
 
                           I N  A S S E M B L Y
 
                               May 17, 2024
                                ___________
 
 Introduced  by  COMMITTEE ON RULES -- (at request of M. of A. Paulin) --
   read once and  referred  to  the  Committee  on  Health  --  committee
   discharged, bill amended, ordered reprinted as amended and recommitted
   to said committee
 
 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;
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
              

                                                            LBD15543-02-4
 A. 10292--A                         2
 
 AND REPRESENTATIVES OF RARE DISEASE PATIENT ORGANIZATIONS.  THE  MEMBERS
 OF  THE  RARE DISEASE ADVISORY COUNCIL SHALL RECEIVE NO COMPENSATION FOR
 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
 A. 10292--A                         3
 
 HEALTH, ONE YEAR FOLLOWING THE EFFECTIVE DATE OF  THIS  SECTION  AND  BY
 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.