2012 -- H 7834 SUBSTITUTE A AS AMENDED

=======

LC01668/SUB A

=======

STATE OF RHODE ISLAND

IN GENERAL ASSEMBLY

JANUARY SESSION, A.D. 2012

____________

A N A C T

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

AND AWARENESS PLAN

     

     

     Introduced By: Representatives Diaz, Naughton, Ferri, Tanzi, and Slater

     Date Introduced: February 28, 2012

     Referred To: House Health, Education & Welfare

It is enacted by the General Assembly as follows:

1-1

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

1-2

amended by adding thereto the following chapter:

1-3

     CHAPTER 87

1-4

THE RHODE ISLAND LUPUS EDUCATION AND AWARENESS PLAN

1-5

     23-87-1. Short title. -- This chapter shall be known and maybe cited as the “Rhode

1-6

Island Lupus Education and Awareness Plan Act of 2012.”

1-7

     23-87-2. Legislative findings. -- It is hereby found and declared as follows:

1-8

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

1-9

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

1-10

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

1-11

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

1-12

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

1-13

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

1-14

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

1-15

     23-87-3. Purpose. – The purpose of this chapter is to create a study commission which

1-16

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

1-17

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

1-18

     23-87-4. Establishment of the lupus study commission. -- (a) The director of the

1-19

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

2-1

nine (9) members, all of whom shall be appointed by the director of the department of health. The

2-2

first chairperson shall be a representative of the Lupus Foundation of America, Inc. and shall

2-3

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

2-4

study commission from among its members.

2-5

     (b) The commission shall be composed of:

2-6

     (1) Two (2) individuals with lupus;

2-7

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

2-8

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

2-9

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

2-10

Lupus Foundation of America, Inc;

2-11

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

2-12

by the Rhode Island medical society;

2-13

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

2-14

recommended by the Rhode Island nurse practitioners’ council;

2-15

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

2-16

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

2-17

advisory committee; and

2-18

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

2-19

     (c) All appointments to the study commission shall be made not later than sixty (60) days

2-20

after the effective date of this chapter. Members of the commission shall serve terms of two (2)

2-21

years. A member may be appointed to serve not more than two (2) terms, whether or not

2-22

consecutive.

2-23

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

2-24

basis each year.

2-25

     (e) Five (5) members of the study commission shall constitute a quorum. A majority vote

2-26

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

2-27

     23-87-5. Establishment of the lupus education and awareness plan (LEAP). -- (a)

2-28

The study commission established in this chapter shall:

2-29

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

2-30

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

2-31

hospitals, lupus advocacy organizations; and

2-32

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

2-33

assessment or similar mechanism.

3-34

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

3-35

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

3-36

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

3-37

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

3-38

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

3-39

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

3-40

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

3-41

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

3-42

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

3-43

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

3-44

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

3-45

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

3-46

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

3-47

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

3-48

based organizations;

3-49

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

3-50

promote lupus education and awareness;

3-51

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

3-52

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

3-53

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

3-54

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

3-55

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

3-56

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

3-57

applications regarding the treatment of lupus;

3-58

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

3-59

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

3-60

information on clinical advances to care providers; and

3-61

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

3-62

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

3-63

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

3-64

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

3-65

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

3-66

of the state.

3-67

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

3-68

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

4-1

December 1, commencing in 2014. The study commission may make periodic revisions to the

4-2

plan that are consistent with the purposes of this section.

4-3

     SECTION 2. This act shall take effect upon passage.

     

=======

LC01668/SUB A

========

EXPLANATION

BY THE LEGISLATIVE COUNCIL

OF

A N A C T

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

AND AWARENESS PLAN

***

5-1

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

5-2

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

5-3

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

5-4

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

5-5

     This act would take effect upon passage.

     

=======

LC01668/SUB A

=======

H7834A