What's happening
This bill repeals the rare disease advisory council and instead directs the health department to form a temporary workgroup to study rare disease issues and report findings within two years.
Why it matters
Shifts from a permanent advisory council to a temporary workgroup. , meaning the state will rely on short-term expert input rather than creating an ongoing body to address rare disease issues.
Brings together a diverse range of stakeholders. including medical professionals, researchers, insurance industry representatives, patients, and caregivers—in the workgroup, potentially leading to more comprehensive and practical recommendations.
Directs the workgroup to identify best practices and barriers. in diagnosing, referring, and treating rare diseases, with a particular focus on financial obstacles, which could influence future policy or funding decisions impacting patient access to care.
Requires a public report within two years. , increasing transparency and potentially informing legislators, healthcare providers, and affected families about the current state of rare disease support and resources in New York.
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Who cares
Headline styles
Create Rare Disease Workgroup
Plain English, a few words. Used as the page title.
Sponsors
No co-sponsors yet.
History
- Substituted by S7172
- Advanced to third reading cal.385
- Reported
- Referred to health
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.
Study Rare Diseases Panel
Signed by Governor · Sponsor Gustavo Rivera
Full text
2 pagesUnderlined is new[Struck] is removedOfficial text on nysenate.gov ↗
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 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
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.
Reflowed for reading: line numbers and page breaks removed. Cite the official text.
Summaries, headlines and scores are AI-generated from the official bill text. How we score bills. Source: NYS Open Legislation.