A00459 Summary:

COSPNSRJaffee, Castro, Robinson, Barron, Crespo, Ortiz, Rivera N, Rivera P, Weprin, Aubry, Schimel
MLTSPNSRArroyo, Boyland, Brennan, Clark, Hooper, Jeffries, Lifton, Lupardo, Markey, Mayer, McEneny, Millman, Peoples-Stokes, Perry, Rosenthal, Scarborough, Sweeney, Thiele, Titone
Amd S207, Pub Health L
Creates an education and outreach program for the autoimmune disease known as lupus; provides for an advisory council consisting of representatives of people with lupus and their families and health care providers who specialize in treating lupus.
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A00459 Actions:

01/05/2011referred to health
05/10/2011reported referred to ways and means
06/17/2011reported referred to rules
06/17/2011rules report cal.428
06/17/2011ordered to third reading rules cal.428
06/17/2011passed assembly
06/17/2011delivered to senate
01/04/2012DIED IN SENATE
01/04/2012ordered to third reading cal.24
01/10/2012passed assembly
01/10/2012delivered to senate
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A00459 Memo:

submitted in accordance with Assembly Rule III, Sec 1(f)
SPONSOR: Gibson (MS)
  TITLE OF BILL: An act to amend the public health law, in relation to the lupus education and outreach program   PURPOSE OR GENERAL IDEA OF BILL: To create a statewide program within the Department of Health to promote awareness to the public and health care professionals concerning the causes and consequences of Lupus.   SUMMARY OF SPECIFIC PROVISIONS: The Commissioner of Health shall establish, promote and maintain, within the department, a Lupus education and awareness program with an emphasis on minority populations and at-risk communities to raise public aware- ness, educate consumers, and educate and train health professionals, human services providers and other audiences. This bill also allows the Department to accept gifts, grants, and donations from the federal government, foundations or other organizations and entities for fulfill- ing the obligations of the program.   JUSTIFICATION: Lupus is a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood and kidneys. Lupus is often called a "Women's Disease" despite the fact that many men are affected. Lupus affects more than 1.5 million people in the United States. Lupus can occur at any age, and in either sex, although it occurs 10-15 times more frequently among adult females than among adult males after puber- ty. About 9 out of 10 people who have Lupus are women. Lupus is three times more common in black women than in white women. It is also more common in women of Hispanic/Latina, Asian, and American Indian descent. Black and Hispanic/Latina women tend to develop symptoms at an earlier age than other women.   PRIOR LEGISLATIVE HISTORY: New.   FISCAL IMPLICATIONS: None.   EFFECTIVE DATE: This Act shall take effect immediately.
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A00459 Text:

                STATE OF NEW YORK
                               2011-2012 Regular Sessions
                   IN ASSEMBLY
                                     January 5, 2011
        Introduced  by M. of A. GIBSON, JAFFEE, CASTRO, SPANO, ROBINSON, BARRON,
          CRESPO, ORTIZ -- Multi-Sponsored by  --  M.  of  A.  DESTITO,  HOOPER,
          SCARBOROUGH, SWEENEY, TITONE -- read once and referred to the  Commit-

          tee 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:
     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.
    18    (d) No new drugs have been approved by the U.S. Food and Drug Adminis-
    19  tration specifically for lupus in nearly forty years and  while  current
    20  treatments  for  the disease can be effective, they can lead to damaging
    21  side effects.
         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.


        A. 459                              2
     1    (e) The pain and fatigue associated with lupus can  threaten  people's
     2  ability  to live independently, make it difficult to maintain employment
     3  and lead normal lives, and one in five people with lupus is disabled  by
     4  the disease, and consequently receives support from government programs,
     5  including  Medicare,  Medicaid,  social  security disability, and social
     6  security supplemental income.
     7    (f) The estimated average annual cost  of  medical  treatment  for  an
     8  individual  with lupus can range between ten thousand dollars and thirty
     9  thousand dollars; for people who have the most serious  form  of  lupus,
    10  medical  costs  can  greatly  exceed  this amount, causing a significant

    11  economic, emotional and social burden to the entire family and society.
    12    (g) More than half of the people with lupus suffer four or more  years
    13  and  visit  three  or  more  physicians  before obtaining a diagnosis of
    14  lupus; early diagnosis of and commencement of treatment  for  lupus  can
    15  prevent or reduce serious organ damage, disability, and death.
    16    (h)  Despite  the magnitude of lupus and its impact on individuals and
    17  families, health professional and public understanding of lupus  remains
    18  low; only one of five Americans can provide even basic information about
    19  lupus,  and  awareness  of lupus is lowest among adults ages eighteen to
    20  thirty-four -- the age group most likely to develop symptoms of lupus.
    21    (i) Lupus is a significant  national  health  issue  that  deserves  a
    22  comprehensive  and coordinated response by state and federal governments

    23  with involvement of the health care provider, patient, and public health
    24  communities.
    25    § 2. Subdivision 1 of section 207 of the public health law is  amended
    26  by adding a new paragraph (i) to read as follows:
    27    (i)  Lupus, a debilitating autoimmune disease that can cause inflamma-
    28  tion and tissue damage to  virtually  any  organ  system  in  the  body,
    29  including  the  skin,  joints,  other connective tissue, blood and blood
    30  vessels, heart, lung, kidney and brain, and which affects women, partic-
    31  ularly women of color, in a disproportionate manner; provided  that  the
    32  program  shall include an advisory council under this section that shall
    33  include representatives of people with  lupus  and  their  families  and

    34  health care providers who specialize in treating lupus, among others.
    35    § 3. Subdivision 7 of section 207 of the public health law, as amended
    36  by  section  16 of part A of chapter 109 of the laws of 2010, is amended
    37  to read as follows:
    38    7. In addition to state funds appropriated  for  programs  under  this
    39  section,  the  commissioner  may  accept  grants  from public or private
    40  sources for these programs.  The  commissioner,  in  administering  this
    41  section,  shall  seek to coordinate the department's programs with other
    42  public and private programs, and  may  undertake  joint  or  cooperative
    43  programs  with other public or private entities, including making grants
    44  (within amounts appropriated therefor  and  consistent  with  applicable
    45  law) to public or not-for-profit entities.

    46    § 4. This act shall take effect immediately.
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