S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   7172
 
                             I N  S E N A T E
 
                             January 10, 2020
                                ___________
 
 Introduced  by  Sen.  RIVERA -- read twice and ordered printed, and when
   printed to be committed to the Committee on Rules
 
 AN ACT to direct the department of health to convene  a  work  group  on
   rare diseases and providing for the repeal of such provisions upon the
   expiration  thereof;  and  to repeal article 27-L of the public health
   law relating 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. Article 27-L of the public health law, as added by a chap-
 ter of the laws of 2019 amending  the  public  health  law  relating  to
 establishing  the rare disease advisory council, as proposed in legisla-
 tive bills numbers S. 4497 and A. 5762, is REPEALED.
   § 2. The department of health, in collaboration with the department of
 financial services, shall convene a workgroup of individuals with exper-
 tise in rare diseases, including physicians,  nurses  and  other  health
 care  professionals  with experience researching, diagnosing or treating
 rare diseases; members of  the  scientific  community  engaged  in  rare
 disease  research;  representatives  from the health insurance industry;
 individuals who have a rare disease or caregivers of  a  person  with  a
 rare disease; and representatives of rare disease patient organizations.
 The  workgroup's focus shall include, but not be limited to: identifying
 best practices that could improve the awareness  of  rare  diseases  and
 referral of people with potential rare diseases to specialists and eval-
 uating  barriers to treatment, including financial barriers on access to
 care. The department of health shall prepare a written report  summariz-
 ing  opinions  and  recommendations  from the workgroup which includes a
 list of existing, publicly accessible resources on research,  diagnosis,
 treatment,  coverage  options  and  education relating to rare diseases.
 This report shall be submitted to the governor, speaker of the  assembly
 and  temporary president of the senate no later than two years following
 the effective date of this act and shall be posted on the department  of
 health's website.
   §  3.  This  act  shall  take  effect on the same date and in the same
 manner as a chapter of the laws of 2019, amending the public health  law
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
              

                       [ ] is old law to be omitted.
                                                            LBD07491-02-0

 S. 7172                             2
 
 relating  to establishing the rare disease advisory council, as proposed
 in legislative bills numbers S. 4497 and  A.  5762;  provided,  however,
 that  the  provisions  of  section  two  of this act shall expire and be
 deemed repealed two years after such effective date.