A4713

An Act establishing the New Jersey Council on Lupus Education and Awareness in the Department of Health 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. Lupus is a chronic autoimmune disease that can cause inflammation and damage to various parts of the body, including the skin, joints, kidneys, heart, lungs, and brain.

b. Systemic lupus erythematosus is the most common and serious form of lupus and disproportionately affects women, particularly women of color.

c. Early diagnosis and appropriate treatment can significantly improve health outcomes and quality of life for individuals living with lupus.

d. Increased public awareness, provider education, research collaboration, and coordinated policy development are essential to improving access to care, reducing health disparities, and advancing scientific understanding of lupus.

e. It is therefore in the public interest to establish a council dedicated to lupus education, awareness, and policy recommendations in this State.

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

a. The council shall consist of 15 members, to be appointed as follows:

(1) the Commissioner of Health, or the commissioner’s designee, who shall serve ex officio;

(2) six public members to be appointed by the Governor, including: a physician licensed to practice medicine in this State with expertise in the diagnosis or treatment of lupus; a physician licensed to practice medicine in this State with expertise in rheumatology; a representative of Rutgers Robert Wood Johnson Medical School who is engaged in autoimmune disease research or clinical practice; a representative of a New Jersey academic medical center or research institution with expertise in lupus or related autoimmune disorders; a health care professional with expertise in immunology, nephrology, dermatology, or other lupus-related specialty care; and a member who is a lupus patient, caregiver, or immediate family member of a person diagnosed with lupus;

(3) four public members to be appointed by the President of the Senate, including: a representative of a nonprofit organization with a demonstrated focus on lupus patient advocacy, education, or support services; a public health professional with experience in health disparities or community-based health education; a representative of a hospital or health care system in this State that provides multidisciplinary lupus care; and a representative with expertise in health insurance coverage, reimbursement, or access to care issues affecting individuals with chronic autoimmune diseases; and

(4) four public members to be appointed by the Speaker of the General Assembly, including: a representative of the New Jersey Hospital Association; a representative of the Medical Society of New Jersey; a representative of an institution of higher education in this State with expertise in autoimmune disease research or health workforce development; and a member of the public with experience in community-based lupus education or outreach initiatives.

b. The term of office of each public member shall be 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 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 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

This bill establishes the New Jersey Lupus Education and Awareness Council (council). Many New Jersey residents suffer from lupus. Lupus is a chronic autoimmune disease that can cause inflammation and damage to various parts of the body, including the skin, joints, kidneys, heart, lungs, and brain. Systemic lupus erythematosus is the most common and serious form of lupus and disproportionately affects women, particularly women of color. Early diagnosis and appropriate treatment can significantly improve health outcomes and quality of life for individuals living with lupus.

This bill establishes a fifteen-member New Jersey Council on Lupus Education and Awareness in the Department of Health (DOH). The 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 DOH.

The council is to be compromised of 15 members, to be appointed as follows: the Commissioner of Health, or the commissioner’s designee, who shall serve ex officio; six public members to be appointed by the Governor, including: a physician licensed to practice medicine in this State with expertise in the diagnosis or treatment of lupus; a physician licensed to practice medicine in this State with expertise in rheumatology; a representative of Rutgers Robert Wood Johnson Medical School who is engaged in autoimmune disease research or clinical practice; a representative of a New Jersey academic medical center or research institution with expertise in lupus or related autoimmune disorders; a health care professional with expertise in immunology, nephrology, dermatology, or other lupus-related specialty care; and a member who is a lupus patient, caregiver, or immediate family member of a person diagnosed with lupus; four public members to be appointed by the President of the Senate, including: a representative of a nonprofit organization with a demonstrated focus on lupus patient advocacy, education, or support services; a public health professional with experience in health disparities or community-based health education; a representative of a hospital or health care system in this State that provides multidisciplinary lupus care; and a representative with expertise in health insurance coverage, reimbursement, or access to care issues affecting individuals with chronic autoimmune diseases; and four public members to be appointed by the Speaker of the General Assembly, including: a representative of the New Jersey Hospital Association; a representative of the Medical Society of New Jersey; a representative of an institution of higher education in this State with expertise in autoimmune disease research or health workforce development; and a member of the public with experience in community-based lupus education or outreach initiatives.

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.