2013 -- H 5932

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LC02133

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STATE OF RHODE ISLAND

IN GENERAL ASSEMBLY

JANUARY SESSION, A.D. 2013

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A N A C T

RELATING TO HEALTH AND SAFETY - - THE RHODE ISLAND LUPUS EDUCATION

AND AWARENESS PLAN

     Introduced By: Representatives Diaz, McNamara, Williams, Slater, and Tanzi

     Date Introduced: March 27, 2013

     Referred To: House Health, Education & Welfare

It is enacted by the General Assembly as follows:

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     SECTION 1. Title 23 of the General Laws entitled "HEALTH AND SAFETY" is hereby

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amended by adding thereto the following chapter:

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     CHAPTER 88

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THE RHODE ISLAND LUPUS EDUCATION AND AWARENESS PLAN

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     23-88-1. Short title. -- This chapter shall be known and maybe cited as the “Rhode

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Island Lupus Education and Awareness Plan.”

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     23-88-2. Legislative findings. -- It is hereby found and declared as follows:

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     (1) Lupus is an urgent national health issue. Lupus is the result of an immune system that

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is unbalanced which can become destructive to any organ or tissue in the body. Lupus is

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unpredictable and potentially fatal, yet no satisfactory treatment exists. Its health consequences

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include heart attacks, strokes, seizures, and organ failure.

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     (2) The Lupus Foundation of America, Inc. estimates that more than 1.5 million

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Americans live with some form of lupus, including an estimated five thousand two hundred

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(5,200) people with lupus in Rhode Island.

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     23-88-3. Purpose. – The purpose of this chapter is to create a study commission which

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will develop a multi-pronged, statewide plan to educate healthcare professionals and persons

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affected with lupus about the diagnosis, management, and treatment of lupus.

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     23-88-4. Establishment of the lupus study commission. -- (a) The director of the

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department of health shall establish and coordinate a study commission on lupus consisting of

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eleven (11) members, all of whom shall be appointed by the director of the department of health.

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The first chairperson shall be a representative of the Lupus Foundation of New England, Inc. and

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shall serve for a two (2) year term. Subsequent chairpersons shall be elected by the membership

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of the study commission from among its members.

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     (b) The commission shall be composed of:

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     (1) Three (3) individuals with lupus;

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     (2) One scientist with experience in lupus and who participates in various fields of

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scientific endeavor, including, but not limited to, biomedical research, social, translational,

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behavioral or epidemiological research recommended by the medical and scientific council of the

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Lupus Foundation of America, Inc;

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     (3) Two (2) physicians with experience in treating people with lupus and recommended

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by the Rhode Island medical society;

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     (4) One nurse practitioner with experience in treating people with lupus and

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recommended by the Rhode Island nurse practitioners’ council;

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     (5) One local representative from the Lupus Foundation of America, Inc.;

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     (6) One representative from the Lupus Foundation of New England, Inc.;

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     (7) One representative recommended by the department of health’s minority health

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advisory committee; and

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     (8) One representative recommended by the women’s health council of Rhode Island.

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     (c) Members of the commission shall serve terms of two (2) years. A member may be

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appointed to serve not more than two (2) terms, whether or not consecutive.

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     (d) The commission shall meet at the call of the chair and no less than on a quarterly

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basis each year.

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     (e) Six (6) members of the study commission shall constitute a quorum. A majority vote

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of a quorum shall be required for any official action of the study commission.

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     23-88-5. Establishment of the lupus education and awareness plan (LEAP). -- (a)

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The study commission established in this chapter shall:

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     (1) Analyze the current state of education on lupus in the state;

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     (2) Evaluate materials and resources currently available from government agencies,

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hospitals, lupus advocacy organizations; and

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     (3) Identify gaps in the current lupus education modalities in the state through a needs

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assessment or similar mechanism.

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     (b) Upon completing the needs assessment described in subsection (a), the study

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commission shall report on the results of its assessment to the department of health and to the

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general assembly. Utilizing the results of such assessment, and with input from the committees of

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the general assembly, having cognizance of matters relating to public heath and the department of

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health, the study commission shall develop a comprehensive lupus education and awareness plan.

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     (c) The study commission shall develop a comprehensive plan to improve education and

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awareness surrounding lupus for healthcare practitioners, public health personnel, patients, and

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persons who may have lupus. The plan shall include the recommendations on how to best:

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     (1) Distribute medically-sound health information produced by the Lupus Foundation of

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America, Inc., the Lupus Foundation of New England and/or government agencies, including, but

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not limited to, the National Institutes of Health, the Centers for Disease Control and Prevention,

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and the Social Security Administration, through local health departments, schools, agencies on

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aging, employer wellness programs, physicians and other health professionals, hospitals, health

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plans and health maintenance organizations, women’s health, and nonprofit and community-

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based organizations;

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     (2) Utilize volunteers in the community to distribute brochures and other materials that

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promote lupus education and awareness;

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     (3) Develop educational materials for health professionals that identify the most recent

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scientific and medical information and clinical applications regarding the treatment of lupus;

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     (4) Work to increase knowledge among physicians, nurses, and health and human

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services professionals about the importance of lupus diagnosis, treatment, and rehabilitation;

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     (5) Support continuing medical education plans in the state’s leading academic

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institutions by providing them the most recent scientific and medical information and clinical

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applications regarding the treatment of lupus;

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     (6) Conduct statewide workshops and seminars for extensive professional development

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regarding the care and management of patients with lupus in an effort to bring the latest

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information on clinical advances to care providers; and

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     (7) Develop and maintain a directory of lupus-related healthcare services, that includes a

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listing of healthcare providers with specialization in services to diagnose and treat lupus and that

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can be disseminated, within available appropriations, by the department of health to individuals

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with lupus, family members of those with lupus, representatives from voluntary organizations,

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healthcare professionals, health plans, local health agencies and authorities and to other agencies

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of the state.

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     (d) The study commission shall report its findings and recommendations to the Rhode

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Island department of health and to both chambers of the general assembly annually on or before

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December 1, commencing in 2015. The study commission may make periodic revisions to the

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plan that are consistent with the purposes of this section.

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     SECTION 2. This act shall take effect upon passage.

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LC02133

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EXPLANATION

BY THE LEGISLATIVE COUNCIL

OF

A N A C T

RELATING TO HEALTH AND SAFETY - - THE RHODE ISLAND LUPUS EDUCATION

AND AWARENESS PLAN

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     This act would establish the “Rhode Island Lupus Education and Awareness Plan” and a

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lupus study commission to develop a statewide plan that would educate healthcare professionals

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and persons affected with lupus. The commission would report its findings and recommendations

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to the department of health and to the general assembly on an annual basis.

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     This act would take effect upon passage.

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LC02133

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