Establishes the rare disease advisory council to identify best practices, raise awareness regarding rare diseases, evaluate barriers to access to care, and to make recommendations to the legislature and the governor.
NEW YORK STATE ASSEMBLY MEMORANDUM IN SUPPORT OF LEGISLATION submitted in accordance with Assembly Rule III, Sec 1(f)
BILL NUMBER: A10292A
SPONSOR: Rules (Paulin) PURPOSE OR GENERAL IDEA OF BILL:
This legislation would establish a rare disease advisory council that
would raise awareness and make recommendations regarding rate disease to
the legislature and governor.
SUMMARY OF PROVISIONS:
Section 1: Establishes a rare disease advisory council that consists of
15 members serving two four-year terms. The council's meetings will
occur within 90 days of the effective date and the council will identify
best practices that could improve awareness of rare diseases. The coun-
cil will also prepare a written report summarizing its findings and
submit it to the governor.
Section 2: This act shall take effect immediately
JUSTIFICATION:
A rare disease is a disease that affects 200,000 or fewer people in the
United States. Many rare diseases do not have a treatment or cure which
greatly affects the lives of those people who have them.
It is important that we take the necessary steps to ensure that those
living with rare diseases get the services they need to stay as healthy
as they possibly can. This bill would create a rare disease advisory
council that would identify best practices, raise awareness regarding
rare diseases, evaluate barriers to access care and will make recommen-
dations to the legislature and the governor. The council will have 15
members who meet once per quarter to discuss the issues surrounding rare
diseases. The council will also write a report summarizing its findings
and recommendations that will be publicly accessible. Rare diseases
because they are so rare are often left out of the conversation and
creating a council will help put a much-needed spotlight on this issue
and will hopefully find some solutions.
PRIOR LEGISLATIVE HISTORY:
None
FISCAL IMPLICATIONS FOR STATE AND LOCAL GOVERNMENTS:
None
EFFECTIVE DATE:
This act shall take effect on the thirtieth day after it shall have
become 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
STATE OF NEW YORK
________________________________________________________________________
10292--A
IN ASSEMBLY
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:
1 Section 1. Title 2-F of the public health law is amended by adding a
2 new section 245 to read as follows:
3 § 245. Rare disease advisory council. 1. For the purposes of this
4 section, "rare disease" means a condition or disease that is currently
5 or has been subject to a research study by the National Institutes of
6 Health Rare Diseases Clinical Research Network or affects fewer than two
7 hundred thousand United States residents per year.
8 2. a. There shall be established within the department a rare disease
9 advisory council to identify best practices, raise awareness regarding
10 rare diseases, evaluate barriers to access to care, and to make recom-
11 mendations to the legislature and the governor.
12 b. An existing body or previously convened body, whether dissolved or
13 not, may be repurposed to meet the requirements of this section.
14 3. The council shall consist of fifteen members, including the commis-
15 sioner or such commissioner's designee, the superintendent of financial
16 services or such superintendent's designee, and nine members to be
17 appointed by the governor. Two members shall be appointed by the speaker
18 of the assembly, two members shall be appointed by the temporary presi-
19 dent of the senate. Membership of such council shall consist of resi-
20 dents of the state of New York and include, but not be limited to, indi-
21 viduals with expertise in rare diseases, including physicians, nurses
22 and other health care professionals with experience researching, diag-
23 nosing or treating rare diseases; members of the scientific community
24 engaged in rare disease research; representatives from the health insur-
25 ance industry; a representative of the biopharma industry; individuals
26 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
1 and representatives of rare disease patient organizations. The members
2 of the rare disease advisory council shall receive no compensation for
3 such member's role on the council, but shall be allowed for such
4 member's actual and necessary expenses incurred in the performance of
5 such member's duties as council members. Time served on a previously
6 convened body shall not count towards the term of office for membership
7 on the rare disease advisory council.
8 4. a. Council members shall serve up to two four year terms commencing
9 from the date of their appointment. Members may serve beyond their term
10 expiration at the pleasure of the appointing authority.
11 b. If a vacancy occurs for an unexpired term, the council, by a major-
12 ity vote, shall fill such vacancy in a timely manner and in compliance
13 with the requirements set forth in subdivision three of this section.
14 c. The council shall annually elect a chair from amongst its members.
15 A chair is eligible for reelection.
16 5. a. The initial meeting of the council shall occur within ninety
17 days after the effective date of this section. The council shall meet at
18 least once per quarter in person or via an online meeting platform as
19 determined by the chair. Such meetings shall comply with article seven
20 of the public officers law.
21 b. The council shall provide opportunities for the public to have
22 updates and provide public comment and create and maintain a public
23 website or utilize an existing website where meeting minutes, notices of
24 upcoming meetings, and public comments can be submitted.
25 6. The council's focus shall include, but not be limited to:
26 a. identifying best practices that could improve the awareness of rare
27 diseases and referring people with rare diseases to specialists;
28 b. evaluating barriers to treatment, including financial barriers on
29 access to care;
30 c. establishing best practices and protocols to include in state plan-
31 ning related to natural disasters, public health emergencies or other
32 emergency declarations to enable the continuity of care for rare disease
33 patients and ensure safeguards against discrimination for rare disease
34 patients are in place;
35 d. convening public hearings, making inquiries, and soliciting
36 comments from the general public in the state to assist the council with
37 a first-year landscape or survey of the needs of rare disease patients,
38 caregivers, and providers in the state;
39 e. providing testimony and comments on pending legislation and regu-
40 lations before the legislature and other state agencies that impact New
41 York's rare disease community;
42 f. consulting with experts on rare diseases to develop policy recom-
43 mendations to improve patient access to, and quality of, rare disease
44 specialists, affordable and comprehensive health care coverage, relevant
45 diagnostics, timely treatment, and other needed services; and
46 g. any other priorities as identified by the department or a majority
47 of the council.
48 7. a. The council, in consultation with the department shall prepare a
49 written report summarizing its findings and recommendations from the
50 council which shall include a list of existing, publicly accessible
51 resources on research, diagnosis, treatment, coverage options and educa-
52 tion relating to rare diseases.
53 b. This report shall be submitted to the governor, the speaker of the
54 assembly, the minority leader of the assembly, the temporary president
55 of the senate, the minority leader of the senate, the senate chair of
56 the committee on health, and the chair of the assembly committee on
A. 10292--A 3
1 health, one year following the effective date of this section and by
2 each January thirtieth thereafter and shall be posted on the depart-
3 ment's website.
4 8. The council may identify public, private, and other available fund-
5 ing sources and may accept and utilize funds from such sources to imple-
6 ment the provisions of this section, including, but not limited to,
7 state funds appropriated for rare disease research, treatment, educa-
8 tion, programming, and related activities.
9 § 2. This act shall take effect on the thirtieth day after it shall
10 have become a law. Effective immediately, the addition, amendment and/or
11 repeal of any rule or regulation necessary for the implementation of
12 this act on its effective date are authorized to be made and completed
13 on or before such effective date.
