NY State Senate Bill 2025-S1287

Current Bill Status - In Senate Committee Health Committee

Introduced
- In Committee Assembly
- In Committee Senate
- On Floor Calendar Assembly
- On Floor Calendar Senate
- Passed Assembly
- Passed Senate
Delivered to Governor
Signed By Governor

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	Assembly Actions - Lowercase Senate Actions - UPPERCASE
Jan 09, 2025	referred to health

co-Sponsors

2025-S1287 (ACTIVE) - Details

See Assembly Version of this Bill:: A1296
Current Committee:: Senate Health
Law Section:: Public Health Law
Laws Affected:: Add Title 2-F §245, Pub Health L
Versions Introduced in 2023-2024 Legislative Session:: S9724, A10292

2025-S1287 (ACTIVE) - Summary

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.

2025-S1287 (ACTIVE) - Sponsor Memo

                                 
BILL NUMBER: S1287

SPONSOR: PERSAUD
 
TITLE OF BILL:

An act to amend the public health law, in relation to establishing the
rare disease advisory council

 
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 one of the bill establishes a rare disease advisory council
within the Department of Health to identify best practices, raise aware-
ness regarding rare diseases, evaluate barriers to access to care, and
to make recommendations to the legislature and Governor.  The Council
must have at least 15 members from within New York's rare disease commu-
nity to be appointed by the Governor with the advice and consent of the

Senate. Members may serve a four-year term, renewable once and beyond
that time at the pleasure of the appointing authority. The council is
tasked with seven duties and the publication of a report on an annual
basis containing their findings and recommendations. The Council is
authorized to identify public, private and other available funding
sources and use funds from such sources to support the requirements of
the Act including state funds appropriated to rare disease research,
treatment, education, programming, and related activities.

Section two provides for the bill effective date.

 
JUSTIFICATION:

This act therefore establishes a standing rare disease advisory council
in New York to advise and consult on policy matters related to rare
diseases. It defines the number and makeup of the body of council
members and the scope of responsibilities for members.

A rare disease is defined by the federal Orphan Drug Act as a medical
condition affecting fewer than 200,000 people in the United States.
According to the National Institutes of Health there are over 10,000
currently known rare diseases affecting over 30 million Americans, 90%
of which lack an FDA approved treatment. Further, the National Organiza-
tion of Rare Disorders (NORD) reports it can take someone with a rare
disease an average of 6 years to receive a diagnosis.

While most rare diseases lack effective treatment, care for those
affected can cost over 400 billion dollars annually according to the
NIH/National Center for Advancing Transitional Sciences project. In
addition to serious health problems, those with rare diseases and their
families often experience significant physical and mental impacts on the
rest of their lives. These impacts can lead to isolation, worsening
disease symptoms, and a significantly lowered quality of life.

While New Yorkers with rare diseases benefit from state supported
services like newborn screening, mandated coverage of medical nutrition
and prescription cost sharing protections, there remain many unmet
needs. Addressing these needs requires a focused, sustained effort and
in 2019, as an important first step, New York created a temporary rare
disease working group which sunset in 2024.  The creation of a permanent
New York State Rare Disease Advisory Council (RDAC) is the critical next
step to help bring greater care, support, and hope for those with rare
diseases, their families and caregivers.

Rare Disease Advisory Councils currently serve 29 other states by
connecting patients, caregivers, and other healthcare experts and
fostering collaboration to improve the development and exchange of know-
ledge and best practices that improve the lives of those with rare
diseases. This can range from helping to create databases on research,
treatments, and treatment providers to helping develop public policies
and support services which enable people with rare diseases to live
healthier lives. Because a RDAC isn't temporary, it can provide a foun-
dation for promoting work essential to supporting advances in science
and technology, as well as the development of resources to help meet the
needs of patients and their caregivers.

 
PRIOR LEGISLATIVE HISTORY:

2024: S9724 Referred to Health

 
FISCAL IMPLICATIONS FOR STATE AND LOCAL GOVERNMENTS:

$100,000 of existing appropriations transferred to State Operations.

 
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

2025-S1287 (ACTIVE) - Bill Text download pdf

                             
                     S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   1287
 
                        2025-2026 Regular Sessions
 
                             I N  S E N A T E
 
                              January 9, 2025
                                ___________
 
 Introduced  by  Sens. PERSAUD, RIVERA -- read twice and ordered printed,
   and when printed to be committed to the Committee on Health
 
 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:
 
   Section 1. Title 2-F of the public health law is amended by  adding  a
 new section 245 to read as follows:
   §  245.  RARE  DISEASE  ADVISORY  COUNCIL. 1. FOR THE PURPOSES OF THIS
 SECTION, "RARE DISEASE" MEANS ANY DISEASE  OR  CONDITION  WHICH  AFFECTS
 LESS THAN TWO HUNDRED THOUSAND PERSONS IN THE UNITED STATES.
   2.  A. THERE SHALL BE ESTABLISHED WITHIN THE DEPARTMENT A RARE DISEASE
 ADVISORY COUNCIL TO IDENTIFY BEST PRACTICES, RAISE  AWARENESS  REGARDING
 RARE  DISEASES,  EVALUATE BARRIERS TO ACCESS TO CARE, AND TO MAKE RECOM-
 MENDATIONS TO THE LEGISLATURE AND THE GOVERNOR.
   B. AN EXISTING BODY OR PREVIOUSLY CONVENED BODY, WHETHER DISSOLVED  OR
 NOT, MAY BE REPURPOSED TO MEET THE REQUIREMENTS OF THIS SECTION.
   3. A. THE COUNCIL SHALL CONSIST OF AT LEAST FIFTEEN MEMBERS, INCLUDING
 THE  COMMISSIONER OR SUCH COMMISSIONER'S DESIGNEE, THE SUPERINTENDENT OF
 FINANCIAL SERVICES OR SUCH SUPERINTENDENT'S DESIGNEE, AND  NINE  MEMBERS
 TO  BE  APPOINTED BY THE GOVERNOR. TWO MEMBERS SHALL BE APPOINTED BY THE
 SPEAKER OF THE ASSEMBLY, TWO MEMBERS SHALL BE APPOINTED BY THE TEMPORARY
 PRESIDENT OF THE SENATE.  MEMBERSHIP OF SUCH COUNCIL  SHALL  CONSIST  OF
 RESIDENTS  OF  THE STATE OF NEW YORK AND INCLUDE, BUT NOT BE LIMITED TO,
 INDIVIDUALS WITH EXPERTISE IN RARE DISEASES, INCLUDING PHYSICIANS, NURS-
 ES AND OTHER HEALTH  CARE  PROFESSIONALS  WITH  EXPERIENCE  RESEARCHING,
 DIAGNOSING OR TREATING RARE DISEASES; MEMBERS OF THE SCIENTIFIC COMMUNI-
 TY  ENGAGED  IN  RARE  DISEASE RESEARCH; REPRESENTATIVES FROM THE HEALTH
 INSURANCE INDUSTRY; A REPRESENTATIVE OF THE BIOPHARMA INDUSTRY; INDIVID-
 UALS WHO HAVE A RARE DISEASE AND CAREGIVERS OF  A  PERSON  WITH  A  RARE
 DISEASE; AND REPRESENTATIVES OF RARE DISEASE PATIENT ORGANIZATIONS.
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
                                                            LBD02189-02-5

 S. 1287                             2
 
   B.  THE  COUNCIL  SHALL  PRIORITIZE  THE REPRESENTATION OF PATIENT AND
 CAREGIVER VOICES WHILE ENSURING NO SINGLE DISEASE  STATE  IS  DISPROPOR-
 TIONATELY REPRESENTED.
   C.  THE  MEMBERS OF THE RARE DISEASE ADVISORY COUNCIL SHALL RECEIVE NO
 COMPENSATION FOR THEIR ROLE ON THE COUNCIL, BUT SHALL BE  ALLOWED  THEIR
 ACTUAL  AND  NECESSARY  EXPENSES  INCURRED  IN  THE PERFORMANCE OF THEIR
 DUTIES AS COUNCIL MEMBERS.
   D. TIME SERVED ON A PREVIOUSLY CONVENED BODY SHALL NOT  COUNT  TOWARDS
 THE TERM OF OFFICE FOR MEMBERSHIP ON THE RARE DISEASE ADVISORY COUNCIL.
   4. A. COUNCIL MEMBERS SHALL SERVE UP TO TWO FOUR YEAR TERMS COMMENCING
 FROM  THE DATE OF THEIR APPOINTMENT. MEMBERS MAY SERVE BEYOND THEIR TERM
 EXPIRATION AT THE PLEASURE OF THE APPOINTING AUTHORITY.
   B. IF A VACANCY OCCURS FOR AN UNEXPIRED TERM, THE COUNCIL, BY A MAJOR-
 ITY VOTE, SHALL FILL SUCH VACANCY IN A TIMELY MANNER AND  IN  COMPLIANCE
 WITH  THE  REQUIREMENTS  SET FORTH IN SUBDIVISIONS TWO AND THREE OF THIS
 SECTION.
   C. THE COUNCIL SHALL ANNUALLY ELECT A CHAIR FROM AMONGST ITS  MEMBERS.
 A CHAIR IS ELIGIBLE FOR REELECTION.
   5.  A. THE INITIAL MEETING OF THE COUNCIL SHALL OCCUR WITHIN THE FIRST
 ONE HUNDRED EIGHTY DAYS AFTER THE EFFECTIVE DATE OF  THIS  SECTION.  THE
 COUNCIL  SHALL MEET AT LEAST ONCE PER QUARTER IN PERSON OR VIA AN ONLINE
 MEETING PLATFORM AS DETERMINED BY THE CHAIR. SUCH MEETINGS SHALL  COMPLY
 WITH ARTICLE SEVEN OF THE PUBLIC OFFICERS LAW.
   B.  THE  COUNCIL  SHALL  PROVIDE  OPPORTUNITIES FOR THE PUBLIC TO HEAR
 UPDATES AND PROVIDE PUBLIC COMMENT AND  CREATE  AND  MAINTAIN  A  PUBLIC
 WEBSITE OR UTILIZE AN EXISTING WEBSITE WHERE MEETING MINUTES, NOTICES OF
 UPCOMING MEETINGS, AND PUBLIC COMMENTS CAN BE SUBMITTED.
   6. THE COUNCIL'S FOCUS SHALL INCLUDE, BUT NOT BE LIMITED TO:
   A. IDENTIFYING BEST PRACTICES THAT COULD IMPROVE THE AWARENESS OF RARE
 DISEASES AND REFERRAL OF PEOPLE WITH POTENTIAL RARE DISEASES TO SPECIAL-
 ISTS;
   B.  EVALUATING  BARRIERS TO TREATMENT, INCLUDING FINANCIAL BARRIERS ON
 ACCESS TO CARE;
   C. ESTABLISHING BEST PRACTICES AND PROTOCOLS TO INCLUDE IN STATE PLAN-
 NING RELATED TO NATURAL DISASTERS, PUBLIC HEALTH  EMERGENCIES  OR  OTHER
 EMERGENCY DECLARATIONS TO ENABLE THE CONTINUITY OF CARE FOR RARE DISEASE
 PATIENTS  AND  ENSURE SAFEGUARDS AGAINST DISCRIMINATION FOR RARE DISEASE
 PATIENTS ARE IN PLACE;
   D.  CONVENING  PUBLIC  HEARINGS,  MAKING  INQUIRIES,  AND   SOLICITING
 COMMENTS FROM THE GENERAL PUBLIC IN THE STATE TO ASSIST THE COUNCIL WITH
 A  FIRST-YEAR LANDSCAPE OR SURVEY OF THE NEEDS OF RARE DISEASE PATIENTS,
 CAREGIVERS, AND PROVIDERS IN THE STATE;
   E. PROVIDING TESTIMONY AND COMMENTS ON PENDING LEGISLATION  AND  REGU-
 LATIONS  BEFORE THE LEGISLATURE AND OTHER STATE AGENCIES THAT IMPACT NEW
 YORK'S RARE DISEASE COMMUNITY;
   F. CONSULTING WITH EXPERTS ON RARE DISEASES TO DEVELOP  POLICY  RECOM-
 MENDATIONS  TO  IMPROVE  PATIENT ACCESS TO, AND QUALITY OF, RARE DISEASE
 SPECIALISTS, AFFORDABLE AND COMPREHENSIVE HEALTH CARE COVERAGE, RELEVANT
 DIAGNOSTICS, TIMELY TREATMENT, AND OTHER NEEDED SERVICES;
   G. ADVISING THE MEDICAID DRUG UTILIZATION REVIEW BOARD IN THEIR REVIEW
 OF PRODUCTS  OR  MEDICATIONS  FOR  THE  TREATMENT  OF  RARE  AND  ORPHAN
 DISEASES, AND DRUGS OR BIOLOGICAL PRODUCTS WITHIN THE EMERGING FIELDS OF
 PERSONALIZED  MEDICINE  AND  NON-INHERITABLE  GENE EDITING THERAPEUTICS.
 ALL ADVISORY COUNCIL RECOMMENDATIONS SHALL BE PRESENTED  IN  WRITING  TO
 MEMBERS  OF  SUCH BOARD AND EXPLAINED TO MEMBERS OF SUCH BOARD BY REPRE-
 SENTATIVES OF THE ADVISORY COUNCIL DURING THEIR PUBLIC  MEETINGS.    THE
 S. 1287                             3
 
 ADVISORY  COUNCIL  HAS  NO AUTHORITY ON ANY MATTER RELATING TO MEDICAID,
 NOR MAY IT REQUIRE SUCH BOARD TO FOLLOW ITS RECOMMENDATIONS; AND
   H.  ANY OTHER PRIORITIES AS IDENTIFIED BY THE DEPARTMENT OR A MAJORITY
 OF THE COUNCIL.
   7. A. THE COUNCIL, IN CONSULTATION WITH THE DEPARTMENT SHALL PREPARE A
 WRITTEN REPORT SUMMARIZING ITS FINDINGS  AND  RECOMMENDATIONS  FROM  THE
 COUNCIL  WHICH  SHALL  INCLUDE  A  LIST OF EXISTING, PUBLICLY ACCESSIBLE
 RESOURCES ON RESEARCH, DIAGNOSIS, TREATMENT, COVERAGE OPTIONS AND EDUCA-
 TION RELATING TO RARE DISEASES.
   B. THIS REPORT SHALL BE SUBMITTED TO THE GOVERNOR, THE SPEAKER OF  THE
 ASSEMBLY,  THE  MINORITY LEADER OF THE ASSEMBLY, THE TEMPORARY PRESIDENT
 OF THE SENATE, THE MINORITY LEADER OF THE SENATE, THE  SENATE  CHAIR  OF
 THE  COMMITTEE  ON  HEALTH,  AND  THE CHAIR OF THE ASSEMBLY COMMITTEE ON
 HEALTH, ONE YEAR FOLLOWING THE EFFECTIVE DATE OF  THIS  SECTION  AND  BY
 EACH  JANUARY  THIRTIETH  THEREAFTER  AND SHALL BE POSTED ON THE DEPART-
 MENT'S WEBSITE.
   C. ANY RECOMMENDATIONS OF THE COUNCIL SHALL BE POSTED ON  THE  DEPART-
 MENT'S  WEBSITE AND INCORPORATED INTO ANY FUTURE "PREVENTION AGENDA: NEW
 YORK STATE'S HEALTH IMPROVEMENT PLAN". THE RECOMMENDATION SHALL ALSO  BE
 SHARED  AT  A PUBLIC MEETING OF THE NEW YORK STATE HEALTH EQUITY COUNCIL
 FOR THEIR CONSIDERATION.
   8. THE COUNCIL MAY IDENTIFY PUBLIC, PRIVATE, AND OTHER AVAILABLE FUND-
 ING SOURCES AND MAY ACCEPT AND UTILIZE FUNDS FROM SUCH SOURCES TO IMPLE-
 MENT THE PROVISIONS OF THIS SECTION,  INCLUDING,  BUT  NOT  LIMITED  TO,
 STATE  FUNDS  APPROPRIATED  FOR RARE DISEASE RESEARCH, TREATMENT, EDUCA-
 TION, PROGRAMMING, AND RELATED ACTIVITIES.
   § 2. Of the monies appropriated in chapter 53 of  the  laws  of  2024,
 enacting the aid to localities budget, for services and expenses related
 to  rare  disease  of  which a portion may be transferred to state oper-
 ations, $100,000 shall be allocated by the department of health and  for
 use  by  administration  and support to implement this act. To implement
 this act, the department may use this allocation for personal services.
   § 3. This act shall take effect on the thirtieth day  after  it  shall
 have become a 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.

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Senate Bill S1287

Sponsored By

Current Bill Status - In Senate Committee Health Committee

co-Sponsors

2025-S1287 (ACTIVE) - Details

2025-S1287 (ACTIVE) - Summary

2025-S1287 (ACTIVE) - Sponsor Memo

2025-S1287 (ACTIVE) - Bill Text download pdf

Comments

Senate Bill S1287

Share this bill

Sponsored By

Roxanne J. Persaud

Current Bill Status - In Senate Committee Health Committee

co-Sponsors

Gustavo Rivera

2025-S1287 (ACTIVE) - Details

2025-S1287 (ACTIVE) - Summary

2025-S1287 (ACTIVE) - Sponsor Memo

2025-S1287 (ACTIVE) - Bill Text download pdf

Comments