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

                                  5178

                       2013-2014 Regular Sessions

                            I N  S E N A T E

                              May 14, 2013
                               ___________

Introduced  by  Sen.  SAVINO -- read twice and ordered printed, and when
  printed to be committed 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.
                                                           LBD02044-01-3
              

S. 5178                             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 (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.