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

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 Lupus.

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

10457 of 2008

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.