BILL NUMBER: S6603
SPONSOR: SANDERS
 
TITLE OF BILL:
An act to amend the public health law, in relation to creating the lupus
research enhancement program; and to amend the state finance law, in
relation to creating the lupus research enhancement fund
 
PURPOSE OR GENERAL IDEA OF BILL:
To promote basic and clinical research programs designed to reduce or
prevent suffering from Lupus, by providing funding, if available, to
state academic medical institutions within the state currently conduct-
ing or having an interest in conducting basic and clinical, social,
translational, technological, epidemiological, and behavioral research
on Lupus.
 
SUMMARY OF PROVISIONS:
The Commissioner of Health shall establish within the department a Lupus
research enhancement program through which the department shall make
grants to state academic medical institutions within the state currently
conducting or having an interest in conducting basic and clinical,
social, translational, technological epidemiological and behavioral
research on Lupus. The Commissioner shall establish a multidisciplinary
Lupus research advisory council to monitor progress and make granting
recommendations to the department. The council shall be comprised of
fifteen (15) members representing a broad range of expertise and experi-
ence. The council shall be comprised as follows:
a) at least three individuals with Lupus;
b) no more than two representatives from the Department of Health;
c) at least five individuals from Lupus nonprofit health organizations;
d) at least five-scientists or clinicians with experience in Lupus and
who participates in various fields of scientific endeavor but not limit-
ed to, the fields of biomedical research, social, translational, behav-
ioral and epidemiological research, and public health. The commissioner
will choose, from among the fifteen council members,one member to serve
as chair.
An annual report shall be transmitted to the legislature on or before
December 31 as specified in the legislation. The secretary of the Lupus
research advisory council may accept grants, services, and property from
the federal government, foundations, organizations, medical schools, and
other entities that may be available for the purpose of fulfilling the
obligations of this program.
The secretary of the research advisory council shall seek any federal
waiver or waivers that may be necessary to maximize funds from the
federal government.
 
JUSTIFICATION:
Lupus is a serious, complex, debilitating autoimmune disease that can
cause inflammation and tissue damage to virtually any organ system in
the body, including the skin, joints, other connective tissues, blood
and blood vessels, heart, lungs, kidney and brain.
The Lupus foundation of America, Inc. estimates that approximately 1.5
to 2 million American live with some form of lupus; Lupus affects women
nine times more often than men and 80 percent of newly diagnosed cases
of Lupus develop among women of childbearing age.
Lupus disproportionately affects women of color - it is two to three
times more common among African-Americans, Hispanics, Asians and Native
Americans and is generally more prevalent in minority populations a
health disparity that remains unexplained. According to the Center for
Disease Control and Prevention the rate of Lupus mortality has increased
since the 1970s and is higher among older African-American women.
Only one new drug has been approved by the U.S. Food and Drug Adminis-
tration specifically for Lupus in nearly 40 years. While current treat-
ments for the disease can be effective, they can lead to damaging side
effects. Despite the magnitude of Lupus and its impact on individuals
and families, health professional and public understanding of Lupus
remains low; only one of five Americans can provide even basic informa-
tion about Lupus, and awareness of lupus is lowest among adults ages 16
to 34 - the age group most likely to develop symptoms of Lupus.
 
PRIOR LEGISLATIVE HISTORY:
2021-22 REFERRED TO SENATE HEALTH
2021-22 referred to ways and means
A.2169 of 2017/2018;
A.2631 of 2015/2016.
 
FISCAL IMPLICATIONS FOR STATE AND LOCAL GOVERNMENTS:
None to states or localities.
 
EFFECTIVE DATE:
Immediately.