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S05216 Summary:

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S05216 Committee Votes:

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S05216 Text:

 
                STATE OF NEW YORK
        ________________________________________________________________________
 
                                         5216--A
 
                               2015-2016 Regular Sessions
 
                    IN SENATE
 
                                       May 7, 2015
                                       ___________
 
        Introduced  by  Sens.  SAVINO, ADDABBO, AVELLA, COMRIE, CROCI, GALLIVAN,
          GOLDEN, GRIFFO, HANNON, KENNEDY, KLEIN,  LATIMER,  PANEPINTO,  PARKER,
          PERALTA, PERKINS, RANZENHOFER, RITCHIE, STAVISKY, VALESKY, VENDITTO --
          read  twice  and  ordered printed, and when printed to be committed to
          the Committee on Health -- recommitted to the Committee on  Health  in
          accordance  with Senate Rule 6, sec. 8 -- reported favorably from said
          committee and committed to  the  Committee  on  Finance  --  committee
          discharged, bill amended, ordered reprinted as amended and recommitted
          to said committee
 
        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:
 
     1    Section  1.  Legislative  intent.  The  legislature  hereby  finds the
     2  following:
     3    (a) Lupus is a serious, complex, debilitating autoimmune disease  that
     4  can  cause  inflammation and tissue damage to virtually any organ system
     5  in the body, including the skin, joints, other connective tissue,  blood
     6  and blood vessels, heart, lungs, kidney, and brain.
     7    (b)  Lupus research estimates that approximately one and a half to two
     8  million Americans live with some form of lupus; lupus affects women nine
     9  times more often than men and eighty percent of newly diagnosed cases of
    10  lupus develop among women of childbearing age.
    11    (c) Lupus disproportionately affects women of color -- it  is  two  to
    12  three  times  more common among African-Americans, Hispanics, Asians and
    13  Native Americans and is generally more prevalent in minority populations
    14  -- a health disparity that remains unexplained. According to the Centers
    15  for Disease Control and Prevention  the  rate  of  lupus  mortality  has
    16  increased  since the late 1970s and is higher among older African-Ameri-
    17  can women.
 
         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.
                                                                   LBD01779-02-6
        S. 5216--A                          2
 
     1    (d) No new drugs have been approved by the U.S. Food and Drug Adminis-
     2  tration specifically for lupus in nearly forty years and  while  current
     3  treatments  for  the disease can be effective, they can lead to damaging
     4  side effects.
     5    (e)  The  pain and fatigue associated with lupus can threaten people's
     6  ability to live independently, make it difficult to maintain  employment
     7  and  lead normal lives, and one in five people with lupus is disabled by
     8  the disease, and consequently receives support from government programs,
     9  including Medicare, Medicaid, social  security  disability,  and  social
    10  security supplemental income.
    11    (f)  The  estimated  average  annual  cost of medical treatment for an
    12  individual with lupus can range between ten thousand dollars and  thirty
    13  thousand  dollars;  for  people who have the most serious form of lupus,
    14  medical costs can greatly exceed  this  amount,  causing  a  significant
    15  economic, emotional and social burden to the entire family and society.
    16    (g)  More than half of the people with lupus suffer four or more years
    17  and visit three or more  physicians  before  obtaining  a  diagnosis  of
    18  lupus;  early  diagnosis  of and commencement of treatment for lupus can
    19  prevent or reduce serious organ damage, disability, and death.
    20    (h) Despite the magnitude of lupus and its impact on  individuals  and
    21  families,  health professional and public understanding of lupus remains
    22  low; only one of five Americans can provide even basic information about
    23  lupus, and awareness of lupus is lowest among adults  ages  eighteen  to
    24  thirty-four -- the age group most likely to develop symptoms of lupus.
    25    (i)  Lupus  is  a  significant  national  health issue that deserves a
    26  comprehensive and coordinated response by state and federal  governments
    27  with involvement of the health care provider, patient, and public health
    28  communities.
    29    §  2. Subdivision 1 of section 207 of the public health law is amended
    30  by adding a new paragraph (m) to read as follows:
    31    (m) Lupus, a debilitating autoimmune disease that can cause  inflamma-
    32  tion  and  tissue  damage  to  virtually  any  organ system in the body,
    33  including the skin, joints, other connective  tissue,  blood  and  blood
    34  vessels, heart, lung, kidney and brain, and which affects women, partic-
    35  ularly  women  of color, in a disproportionate manner; provided that the
    36  program shall include an advisory council under this section that  shall
    37  include  representatives  of  people  with  lupus and their families and
    38  health care providers who specialize in treating lupus, among others.
    39    § 3. Subdivision 7 of section 207 of the public health law, as amended
    40  by section 16 of part A of chapter 109 of the laws of 2010,  is  amended
    41  to read as follows:
    42    7.  In  addition  to  state funds appropriated for programs under this
    43  section, the commissioner may  accept  grants  from  public  or  private
    44  sources  for  these  programs.  The  commissioner, in administering this
    45  section, shall seek to coordinate the department's programs  with  other
    46  public  and  private  programs,  and  may undertake joint or cooperative
    47  programs with other public or private entities, including making  grants
    48  (within  amounts  appropriated  therefor  and consistent with applicable
    49  law) to public or not-for-profit entities.
    50    § 4. This act shall take effect immediately.