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

Subdivision 1 of § 207 of the Public Health Law is amended by adding a new paragraph (m) to read as follows:

(M) LUPUS, A 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, LUNG, KIDNEY AND BRAIN, AND WHICH AFFECTS WOMEN, PARTICULARLY 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.

This bill will authorize the Commissioner of Health to establish The Lupus Education and Outreach Program with the goal to raise public awareness and educate consumers. The program will support efforts to further assist health care professionals, public health specialists, human services providers, and those in related fields to recognize the illness as Lupus. It will also put an emphasis on women and minorities, who are at the highest risk for developing this illness.

In addition to state funds appropriated for programs under this section, the department may undertake joint or cooperative programs with other public or private entities and the federal government. The department will also be authorized to accept gifts, grants and donations from foundations and other public or private entities.

Justification

Lupus is a chronic inflammatory and debilitating autoimmune disease that affects various parts of the body, especially the skin, joints, blood and kidneys. It is unpredictable, highly individualized, and potentially fatal. Lupus is not easily diagnosed, and there is no known cause or cure.

*Lupus affects more than 1.5 million people in the United States

*Although it can occur at any age, 80% of new cases develop between the ages of 15 and 44 - during the prime of life

*It occurs 10-15 times more frequently among adult females than among adult males after puberty

*Approximately 9 out of 10 people who have Lupus are women *It is 3 times more common in African American women than in Caucasian women, and also more common in women of Hispanic/Latina, Asian, and American Indian descent

*African American and Hispanic/Latina women tend to develop symptoms at an earlier age than other women

*Lupus is a leading cause of kidney disease, stroke and premature cardiovascular disease in young women

Lupus suffers from the lack of awareness more than any other major disease. It can mirror other illnesses, therefore the symptoms may be treated separately, most of the time with little or no results. It may take years of visiting numerous physicians of various specialties to identify the illness as Lupus. Consequently, patients do not receive the already limited amount of treatment available while their health is further deteriorating.

A statewide education and outreach program to stress the urgent need for increased public and professional awareness is paramount to early diagnosis and treatment, thereby providing much relief of the physical, emotional and economic impact for those suffering this dreadful disease.

Senate

5/4/16 - Reported from Health, committed to Finance. 2015, 2014, 2012, 2011 - Reported from Health, committed to Finance.

Assembly

A3072 Peoples-Stokes 2016 - Reported from Health, reported to Assembly Ways and Means 2015 - Reported from Health, reported to Assembly Ways and Means 2014 - Referred to Health 2012 and 2011 - PASSED ASSEMBLY (Gibson A459).

Fiscal implications

Minimal, and to be determined based upon the authorized collaboration with outside funding resources.

Effective date

Immediately.