A BILL TO BE ENTITLED
AN ACT designating the month of may of each year as lupus awareness month and establishing an advisory council on lupus within the department of health and human services.
Whereas, lupus is an acute and chronic autoimmune disease in which the immune system is unbalanced, causing inflammation and tissue damage to virtually every organ system in the body, including the skin, lungs, heart, kidneys, and brain; and
Whereas, lupus can cause seizures, strokes, heart attacks, miscarriages, organ failures, and even death; and
Whereas, lupus strikes mostly women of childbearing age, and African‑Americans, Hispanics, Latinos, Asians, and Native Americans are two to three times more likely to develop lupus; and
Whereas, lupus can be particularly difficult to diagnose because its symptoms mimic those of many other illnesses and major gaps exist in understanding the causes and consequences of lupus; and
Whereas, there have been no new drugs approved by the United States Food and Drug Administration specifically for lupus in 52 years, and current treatments for the disease can have damaging side effects; and
Whereas, more than half of all people with lupus suffer four or more years and require three or more doctors during that time before receiving an accurate diagnosis of the disease; and
Whereas, approximately 35,000 to 40,000 North Carolinians and 1.5 million Americans are living with this chronic illness for which there is no cure; and
Whereas, lupus costs the nation $31.4 billion annually; and
Whereas, increased public awareness, education, and research are key to winning the battle against lupus; Now, therefore,
The General Assembly of North Carolina enacts:
SECTION 1.  Chapter 103 of the General Statutes is amended by adding a new section to read:
"§ 103-15.  Lupus Awareness Month.
The month of May of each year is designated as Lupus Awareness Month in North Carolina."
SECTION 2.  Article 1B of Chapter 130A of the General Statutes is amended by adding a new Part to read:
"Part 5.
"Lupus Advisory Council.
"§ 130A‑33.52.  Lupus Advisory Council.
(a)	There is established the Lupus Advisory Council in the Department. The Council shall have the following duties and responsibilities with respect to North Carolina residents who have been diagnosed with lupus:
(1)	Make recommendations to the Governor and the Secretary aimed at improving their health status.
(2)	Identify and examine the limitations and problems associated with existing laws, regulations, programs, and services.
(3)	Examine the financing of, and access to, health services.
(4)	Identify and review health promotion and disease prevention strategies relating to the leading causes of death and disability.
(5)	To advise the Governor and the Secretary upon any matter which the Governor or Secretary may refer to it.
(b)	The Lupus Advisory Council in the Department shall consist of 15 members to be appointed as follows:
(1)	Four members shall be appointed by the Governor, three of whom shall be scientists with experience in lupus who participate in various fields of scientific endeavor, including, but not limited to, biomedical research, social, translational, behavioral, and epidemiological research, and public health; and one of whom shall be an individual who has been diagnosed with lupus.
(2)	Four members shall be appointed by the Speaker of the House of Representatives, two of whom shall be medical clinicians with experience in treating individuals diagnosed with lupus; one of whom shall represent nonprofit women's organizations and health organizations, including at least one state or national organization that deals with the treatment of lupus; and one of whom shall be a public member who has been diagnosed with lupus. 
(3)	Four members shall be appointed by the President Pro Tempore of the Senate, three of whom shall represent nonprofit women's organizations and health organizations, including at least one state or national organization that deals with the treatment of lupus; and one of whom shall be a public member who has been diagnosed with lupus.
(4)	Three members appointed by the Secretary, representing the Divisions of Public Health and Social Services.
(5)	Of the members appointed by the Governor, two shall serve initial terms of one year, two shall serve initial terms of two years, and one shall serve an initial term of three years. Thereafter, the Governor's appointees shall serve terms of four years.
(6)	Of the nonlegislative members appointed by the Speaker of the House of Representatives, two shall serve initial terms of two years, and one shall serve an initial term of three years. Thereafter, nonlegislative members appointed by the Speaker of the House of Representatives shall serve terms of four years. Of the nonlegislative members appointed by the President Pro Tempore of the Senate, two shall serve initial terms of two years, and one shall serve an initial term of three years. Thereafter, nonlegislative members appointed by the President Pro Tempore of the Senate shall serve terms of four years. Legislative members of the Council shall serve two‑year terms.
(c)	The Chairperson of the Council shall be elected by the Council from among its membership.
(d)	The majority of the Council shall constitute a quorum for the transaction of business.
(e)	Members of the Council shall receive per diem and necessary travel and subsistence expenses in accordance with the provisions of G.S. 138‑5 or G.S. 138‑6, or travel and subsistence expenses in accordance with the provisions of G.S. 120‑3.1, as applicable.
(f)	All clerical support and other services required by the Council shall be provided by the Department."
SECTION 3.  This act is effective when it becomes law.