Bill S5177-2013

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

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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  • Jan 8, 2014: REFERRED TO FINANCE
  • May 14, 2013: REFERRED TO FINANCE

Memo

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.


Text

STATE OF NEW YORK ________________________________________________________________________ 5177 2013-2014 Regular Sessions IN SENATE 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,
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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