S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                  8884

                       2009-2010 Regular Sessions

                          I N  A S S E M B L Y

                              June 12, 2009
                               ___________

Introduced by M. of A. GIBSON -- 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.
  (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,

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD02147-04-9
              

A. 8884                             2

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 (g) to read as follows:
  (G) 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  added
by chapter 414 of the laws of 2005, 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.