S T A T E O F N E W Y O R K
________________________________________________________________________
544
2013-2014 Regular Sessions
I N A S S E M B L Y
(PREFILED)
January 9, 2013
___________
Introduced by M. of A. GIBSON, JAFFEE, CRESPO, SCHIMEL -- Multi-Spon-
sored by -- M. of A. BRENNAN, HOOPER, MARKEY, MAYER, MILLMAN,
PEOPLES-STOKES, PERRY, SCARBOROUGH, THIELE -- read once and referred
to the Committee on Health
AN ACT to amend the public health law, in relation to the lupus educa-
tion and outreach program
THE PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
BLY, DO ENACT AS FOLLOWS:
Section 1. Legislative intent. The legislature hereby finds the
following:
(a) 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 tissue, blood
and blood vessels, heart, lungs, kidney, and brain.
(b) Lupus research estimates that approximately one and a half to two
million Americans live with some form of lupus; lupus affects women nine
times more often than men and eighty percent of newly diagnosed cases of
lupus develop among women of childbearing age.
(c) 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 Centers
for Disease Control and Prevention the rate of lupus mortality has
increased since the late 1970s and is higher among older African-Ameri-
can women.
(d) No new drugs have been approved by the U.S. Food and Drug Adminis-
tration specifically for lupus in nearly forty years and while current
treatments for the disease can be effective, they can lead to damaging
side effects.
EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
[ ] is old law to be omitted.
LBD02044-01-3
A. 544 2
(e) The pain and fatigue associated with lupus can threaten people's
ability to live independently, make it difficult to maintain employment
and lead normal lives, and one in five people with lupus is disabled by
the disease, and consequently receives support from government programs,
including Medicare, Medicaid, social security disability, and social
security supplemental income.
(f) The estimated average annual cost of medical treatment for an
individual with lupus can range between ten thousand dollars and thirty
thousand dollars; for people who have the most serious form of lupus,
medical costs can greatly exceed this amount, causing a significant
economic, emotional and social burden to the entire family and society.
(g) More than half of the people with lupus suffer four or more years
and visit three or more physicians before obtaining a diagnosis of
lupus; early diagnosis of and commencement of treatment for lupus can
prevent or reduce serious organ damage, disability, and death.
(h) 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 information about
lupus, and awareness of lupus is lowest among adults ages eighteen to
thirty-four -- the age group most likely to develop symptoms of lupus.
(i) Lupus is a significant national health issue that deserves a
comprehensive and coordinated response by state and federal governments
with involvement of the health care provider, patient, and public health
communities.
S 2. Subdivision 1 of section 207 of the public health law is amended
by adding a new paragraph (i) to read as follows:
(I) LUPUS, A DEBILITATING AUTOIMMUNE DISEASE THAT CAN CAUSE INFLAMMA-
TION AND TISSUE DAMAGE TO VIRTUALLY ANY ORGAN SYSTEM IN THE BODY,
INCLUDING THE SKIN, JOINTS, OTHER CONNECTIVE TISSUE, BLOOD AND BLOOD
VESSELS, HEART, LUNG, KIDNEY AND BRAIN, AND WHICH AFFECTS WOMEN, PARTIC-
ULARLY WOMEN OF COLOR, IN A DISPROPORTIONATE MANNER; PROVIDED THAT THE
PROGRAM SHALL INCLUDE AN ADVISORY COUNCIL UNDER THIS SECTION THAT SHALL
INCLUDE REPRESENTATIVES OF PEOPLE WITH LUPUS AND THEIR FAMILIES AND
HEALTH CARE PROVIDERS WHO SPECIALIZE IN TREATING LUPUS, AMONG OTHERS.
S 3. Subdivision 7 of section 207 of the public health law, as amended
by section 16 of part A of chapter 109 of the laws of 2010, is amended
to read as follows:
7. In addition to state funds appropriated for programs under this
section, the commissioner may accept grants from public or private
sources for these programs. The commissioner, in administering this
section, shall seek to coordinate the department's programs with other
public and private programs, and may undertake joint or cooperative
programs with other public or private entities, INCLUDING MAKING GRANTS
(WITHIN AMOUNTS APPROPRIATED THEREFOR AND CONSISTENT WITH APPLICABLE
LAW) TO PUBLIC OR NOT-FOR-PROFIT ENTITIES.
S 4. This act shall take effect immediately.