S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   9132
 
                           I N  A S S E M B L Y
 
                             January 22, 2020
                                ___________
 
 Introduced by M. of A. PAULIN -- read once and referred to the Committee
   on Health
 
 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 tive bills numbers S. 4497 and A. 5762, is REPEALED.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

 A. 9132                             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.