senate Bill S5177

2013-2014 Legislative Session

Creates an education and outreach program for the autoimmune disease known as lupus; appropriation

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Archive: Last Bill Status - In Committee


  • Introduced
  • In Committee
  • On Floor Calendar
    • Passed Senate
    • Passed Assembly
  • Delivered to Governor
  • Signed/Vetoed by Governor

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Assembly Actions - Lowercase
Senate Actions - UPPERCASE
Jan 08, 2014 referred to finance
May 14, 2013 referred to finance

S5177 - Bill Details

Current Committee:
Law Section:
Appropriations
Laws Affected:
Amd ยง207, Pub Health L
Versions Introduced in Previous Legislative Sessions:
2011-2012: S1109
2009-2010: S2847

S5177 - Bill Texts

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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; appropriates funds for the lupus education and awareness program.

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BILL NUMBER:S5177

TITLE OF BILL: An act to amend the public health law, in relation to
the lupus education and outreach program; and making an appropriation
therefor

PURPOSE OR GENERAL IDEA OF BILL:

The purpose of this Act is to create a multi-pronged, statewide
program to promote public and health professional (state and local
health and human services officials, physicians, nurses and other
health care providers) awareness and increase knowledge concerning the
causes and consequences of Lupus, the importance of early diagnosis
and appropriate management, and effective treatment and management
strategies by:

1. Conducting educational and training programs for health
professionals on Lupus diagnosis and management;

2. Developing and disseminating educational materials and information
to patients and health professionals on Lupus research results and
Lupus health care services available;

3. Designing and implementing a statewide public education campaign
aimed at heightening public awareness of Lupus; and

4. Leveraging educational and training resources and services
previously developed by organizations with appropriate expertise and
knowledge of Lunus.

SUMMARY OF SPECIFIC PROVISIONS:

The Commissioner shall establish, within the department, and shall
promote and maintain a Lupus education and awareness program with an
emphasis on minority populations and at-risk communities to raise
public awareness, educate consumers, and educate and train health
professionals, human services providers and other audiences. The
Department shall do the following in implementing the program:

*provide sufficient staff and appropriate training;

*establish a grant program to support non-profit voluntary health
organizations with experience in Lupus to increase public awareness
and enhance health professional education and understanding of the
symptoms and consequences of Lupus and the populations most a-risk;

*establish an interagency council and advisory board to oversee the
implementation of the program;

*the Department may accept gifts, grants, and donations from the
federal government, foundations, organizations, medical schools, and
other entities for fulfilling the obligations of the program. Any
funds shall supplement and not supplant appropriations provided for
the implementation of the program;

*conduct a needs assessment as defined in the legislation;


*develop and maintain a directory of Lupus -related services and Lupus
health care providers with specialization in services to diagnose and
treat Lupus;

*prepare an annual report that describes educational initiatives that
shall be transmitted to the Legislature and shall be made available to
the public, and

* establish and coordinate an advisory panel to provide input and
counsel regarding the Lupus education and awareness 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 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 puberty or after the emergence into sexual maturity.
Lupus affects more than 1.5 million people in the United States. 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:

2008: A.10457-Referred to Health, Reported to Ways and Means/S.8273
-Referred to Finance, 2009-2010: A.8946-Referred to Health, Reported
to Ways and Means/ S. 2847 - Referred to Finance, Reported - Referred
to Health, 2011-2012: A.457 - Referred to Health/ S.1109 - Referred to
Finance

FISCAL IMPLICATIONS:

$250,000,00 and the Department shall seek any federal waiver that may
be necessary to maximize funds from the federal government to
implement the Program.

EFFECTIVE DATE:

This Act shall take effect immediately.

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

                                  5177

                       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 Finance

AN ACT to amend the public health law, in relation to the  lupus  educa-
  tion and outreach program; and making an appropriation therefor

  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.
                                                           LBD02047-01-3

S. 5177                             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. The sum of two hundred fifty thousand dollars  ($250,000.00),  or
so  much  thereof  as  may  be  necessary, is hereby appropriated to the
department of health out of any moneys in  the  state  treasury  in  the
general  fund to the credit of the state purposes account, not otherwise
appropriated, and made immediately available, for the purpose of  carry-
ing  out the provisions of this act. Such moneys shall be payable on the
audit and warrant of the comptroller on vouchers certified  or  approved
by the commissioner of health in the manner prescribed by law.
  S 5. This act shall take effect immediately.

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