S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                  6671--A
 
                        2021-2022 Regular Sessions
 
                           I N  A S S E M B L Y
 
                              March 25, 2021
                                ___________
 
 Introduced by 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 chapter 74 of the laws of 2020 relating to directing the
   department of health to convene a work  group  on  rare  diseases,  in
   relation  to  the  deadline to submit a report on rare diseases and to
   the effectiveness thereof
 
   THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND  ASSEM-
 BLY, DO ENACT AS FOLLOWS:
 
   Section 1. Sections 2 and 3 of chapter 74 of the laws of 2020 relating
 to  directing  the  department of health to convene a work group on rare
 diseases, are amended to read as follows:
   § 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. The
 workgroup  shall  convene no later than December twentieth, two thousand
 twenty-one and this report shall be submitted to the  governor,  speaker
 of  the  assembly  and  temporary  president of the senate no later than
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
              

                                                            LBD10409-02-1

 A. 6671--A                          2
 
 [two] THREE 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
 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] THREE years after such effective date.
   § 2. This act shall take effect immediately.