NEW YORK STATE ASSEMBLY MEMORANDUM IN SUPPORT OF LEGISLATION submitted in accordance with Assembly Rule III, Sec 1(f)
BILL NUMBER: A9132
SPONSOR: Paulin TITLE OF BILL:
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
PURPOSE OR GENERAL IDEA OF BILL:
The purpose of this bill is to establish a work group to examine rare
diseases to improve education and treatment in order to advance the
goals of Chapter 719 of the Laws of 2019.
SUMMARY OF SPECIFIC PROVISIONS:
Section 1 of the bill makes technical amendments necessary to accomplish
the goals of the bill.
Section 2 would direct the Department of Health in consultation with the
Department of Financial Services to convene a work group of individuals
with expertise in rare diseases. The work group would work to identify
best practices to improve awareness and referral of those that may have
rare diseases as well evaluating potential barriers to treatment. The
work group would produce a report on their findings which will be
submitted to the Governor and the Legislature.
Section 3 would establish an effective date the same as Chapter 719 of
the Laws of 2019.
JUSTIFICATION:
Chapter 719 of the Laws of 2019 established an advisory council on rare
diseases. This bill replaces the language with the creation of a work
group created of experts in the field of rare diseases. These individ-
uals will be tasked with examining how rare diseases are handled and
treated in New York and will produce a report on their findings to help
shape policy initiatives to improve the lives of New Yorkers suffering
from rare diseases.
PRIOR LEGISLATIVE HISTORY:
New Legislation.
FISCAL IMPLICATIONS:
None noted.
EFFECTIVE DATE:
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 legisla-
tive 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repealed two years after such effective date.
STATE OF NEW YORK
________________________________________________________________________
9132
IN ASSEMBLY
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:
1 Section 1. Article 27-L of the public health law, as added by a chap-
2 ter of the laws of 2019 amending the public health law relating to
3 establishing the rare disease advisory council, as proposed in legisla-
4 tive bills numbers S. 4497 and A. 5762, is REPEALED.
5 § 2. The department of health, in collaboration with the department of
6 financial services, shall convene a workgroup of individuals with exper-
7 tise in rare diseases, including physicians, nurses and other health
8 care professionals with experience researching, diagnosing or treating
9 rare diseases; members of the scientific community engaged in rare
10 disease research; representatives from the health insurance industry;
11 individuals who have a rare disease or caregivers of a person with a
12 rare disease; and representatives of rare disease patient organizations.
13 The workgroup's focus shall include, but not be limited to: identifying
14 best practices that could improve the awareness of rare diseases and
15 referral of people with potential rare diseases to specialists and eval-
16 uating barriers to treatment, including financial barriers on access to
17 care. The department of health shall prepare a written report summariz-
18 ing opinions and recommendations from the workgroup which includes a
19 list of existing, publicly accessible resources on research, diagnosis,
20 treatment, coverage options and education relating to rare diseases.
21 This report shall be submitted to the governor, speaker of the assembly
22 and temporary president of the senate no later than two years following
23 the effective date of this act and shall be posted on the department of
24 health's website.
25 § 3. This act shall take effect on the same date and in the same
26 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
1 relating to establishing the rare disease advisory council, as proposed
2 in legislative bills numbers S. 4497 and A. 5762; provided, however,
3 that the provisions of section two of this act shall expire and be
4 deemed repealed two years after such effective date.
