What's happening
This bill repeals the Rare Disease Advisory Council and directs the Department of Health to convene a rare diseases workgroup for two years.
Why it matters
Shifts from a permanent council to a temporary workgroup. , meaning state-level attention to rare diseases will be organized for only two years rather than as an ongoing advisory body—potentially affecting long-term policy continuity and advocacy.
Broadens stakeholder input by requiring the workgroup to include not just medical professionals and researchers, but also insurance industry representatives and patient advocates. , which may influence the range of perspectives and recommendations produced.
Mandates a comprehensive report within two years. that must summarize best practices, barriers to treatment (including financial barriers), and existing resources for rare diseases—possibly creating a new baseline of information for future legislative or regulatory efforts.
Eliminates the legal foundation for a standing advisory council on rare diseases. , which could impact the advocacy infrastructure and ongoing visibility of rare disease issues in state health policy after the two-year workgroup concludes.
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Who cares
Department of Health and Department of Financial Services
The bill would require the agencies to collaborate on convening a rare disease workgroup, with Health responsible for publishing its recommendations within two years.
People with rare diseases, caregivers and patient organizations
They would have representation on a workgroup examining specialist referrals and barriers to treatment, including financial barriers.
Physicians, nurses and rare disease researchers
They would help identify best practices to improve rare disease awareness and referrals to specialists.
Health insurers
Industry representatives would participate in the workgroup evaluating treatment barriers, and the resulting report would list publicly accessible resources on coverage options.
Headline styles
Study Rare Diseases Panel
Plain English, a few words. Used as the page title.
Sponsors
No co-sponsors yet.
History
- Signed chap.74
- Delivered to governor
- Returned to senate
- Passed assembly
- Ordered to third reading cal.385
- Substituted for A9132
- Referred to health
- Delivered to assembly
- Passed senateVote 61–0
- Ordered to third reading cal.96
- Referred to rules
Companion bill
The same bill in the other chamber. A bill becomes law when one version passes both houses and the governor signs it, so either number can carry it.
Create Rare Disease Workgroup
Assembly Floor Calendar · Sponsor Amy Paulin
Full text
2 pagesUnderlined is new[Struck] is removedOfficial text on nysenate.gov ↗
STATE OF NEW YORK
7172
IN SENATE
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 Assembly, do enact as follows:
Section 1. Article 27-L of the public health law, as added by 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, is REPEALED.
§ 2. The department of health, in collaboration with the department of financial services, shall convene a workgroup of individuals with expertise 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 evaluating barriers to treatment, including financial barriers on access to care. The department of health shall prepare a written report summarizing 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.
Reflowed for reading: line numbers and page breaks removed. Cite the official text.
Sponsor's memo
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
This is a chapter amendment that makes changes to provisions of L.2019, c.719.
Summary of provisions
This legislation modifies the underlying chapter by repealing the estab- lishment of the rare disease advisory council and instead convene a workgroup that will identify best practices to increase awareness of rare diseases and improve patient referral to treatment. The legis- lation also requires the Department to issue a report in no more than two years since the Chapter's effective date.
Justification
Pursuant to approval memo 66 of 2019, the Executive expressed concerns that the bill would require the expenditure of funds that are unbudget- ed.
Legislative history
Chapter amendment to Chapter 719 of the Laws of 2019.
Fiscal implications
None
Effective date
This act shall take effect immediately.
Summaries, headlines and scores are AI-generated from the official bill text. How we score bills. Source: NYS Open Legislation.