BILL NUMBER: S1287A
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