New Jersey-2012-S2033-Introduced

An Act establishing the New Jersey Council on Lupus Education and Awareness in the Department of Health and Senior Services and supplementing Title 26 of the Revised Statutes.

Be It Enacted by the Senate and General Assembly of the State of New Jersey:

1. The Legislature finds and declares that:

a. It is estimated that as many as 43,000 New Jersey residents suffer from lupus, a lifelong autoimmune disease in which the immune system becomes unbalanced, causing inflammation, tissue damage, seizures, strokes, heart attacks, miscarriages, and organ failure;

b. Although anyone can develop lupus, it strikes mostly women of childbearing age, and African-American, Latina, Asian and Native American women are two to three times more likely than Caucasians to develop lupus;

c. Lupus can be difficult to diagnose, and often is misdiagnosed because the symptoms are similar to those of other illnesses; and

d. It is in the public interest for this State to establish an entity to develop and implement a comprehensive plan to improve education and awareness about lupus for health care providers and the general public.

2. There is established the New Jersey Council on Lupus Education and Awareness within the Department of Health and Senior Services.

a. The council shall include seven members as follows:

(1) The Commissioner of Health and Senior Services, or the commissioner's designee, as an ex officio member;

(2) six public members who are residents of this State, including: one person who has been diagnosed with lupus and has been recommended by the Lupus Foundation of America, New Jersey Chapter, Inc., who shall be appointed by the President of the Senate; one representative of the Lupus Foundation of America, New Jersey Chapter, Inc., who shall be appointed by the Speaker of the General Assembly; and four members who shall be appointed by the Governor with the advice and consent of the Senate, including one person recommended by the Women's Health Advisory Commission, one person recommended by the New Jersey Office on Minority and Multicultural Health Advisory Commission, one health care professional with significant clinical experience in treating persons with lupus, and one research scientist with relevant expertise who is affiliated with a university based in the State.

b. The term of office of each public member shall be three years, except that of the public members first appointed, two shall be appointed for a term of one year, two shall be appointed for a term of two years, and two shall be appointed for a term of three years. All vacancies shall be filled for the balance of the unexpired term in the same manner as the original appointment. A member of the council is eligible for reappointment.

c. The members of the council shall serve without compensation but may be reimbursed for any expenses incurred by them in the performance of their duties, subject to the availability of funds.

d. The council shall organize as soon as practicable after the appointment of its members and shall select a chairperson from among its members.

e. The council shall be entitled to call to its assistance and avail itself of the services of the employees of any State, county, or municipal department, board, bureau, commission, or agency as it may require and as may be available to perform its duties.

3. The purpose of the council shall be to ensure that a comprehensive lupus education and awareness plan is implemented in the State for health care providers and the general public.

a. The council shall conduct an initial assessment of the state of education on lupus in the State.

b. Based on the assessment required pursuant to subsection a. of this section, the council shall develop information on lupus that is endorsed by government agencies, including, but not limited to, the National Institutes of Health and the federal Centers for Disease Control and Prevention. The Department of Health and Senior Services shall post the information that the council develops on its Internet website. Subject to available appropriations, the department may distribute this information to individuals with lupus, their family members, health care professionals, hospitals, local health departments, schools, agencies on aging, employers, health plans, women's health groups, and nonprofit and community-based organizations.

c. The council shall develop a directory of lupus-related health care services, which shall be made available on the Internet website of the Department of Health and Senior Services, and shall include a list of health care providers who specialize in the diagnosis and treatment of lupus.

4. The council shall report to the Governor, and to the Legislature pursuant to section 2 of P.L.1991, c.164 (C.52:14-19.1), no later than one year after the effective date of this act and annually thereafter, on the council's activities and may include any recommendations for legislative action that it deems appropriate.

5. This act shall take effect immediately.

STATEMENT

Many New Jersey residents suffer from lupus, a lifelong autoimmune disease that can cause inflammation, tissue damage, seizures, strokes, heart attacks, miscarriages, and organ failure. It strikes mostly women of childbearing age and, more often than not, African-American, Latina, Asian and Native American women. Lupus can be difficult to diagnose and often is misdiagnosed.

This bill establishes a seven-member New Jersey Council on Lupus Education and Awareness in the Department of Health and Senior Services (DHSS). This purpose of the council is to assess the status of education on lupus in the State and develop and implement a comprehensive lupus education and awareness plan accordingly. In addition, the council is to develop a directory of health care providers who specialize in the diagnosis and treatment of lupus that will be available through DHSS.

The council is to be comprised of the Commissioner of Health and Senior Services, or a designee, and six public members who are residents of this State, including a person who has been diagnosed with lupus, a representative of the Lupus Foundation of America, New Jersey Chapter, Inc., a person recommended by the Women's Health Advisory Commission, a person recommended by the New Jersey Office on Minority and Multicultural Health Advisory Commission, a health care professional with significant clinical experience in treating persons with lupus, and a research scientist with relevant expertise who is affiliated with a university based in the State.

The council is to report annually to the Governor and the Legislature on its activities and may include any recommendations for legislative action that it deems appropriate.