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.