Chapter 491
2012 -- H 7834 SUBSTITUTE A AS
AMENDED
Enacted 06/28/12
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
It is enacted by the
General Assembly as follows:
SECTION 1. Title 23 of the General Laws entitled
"HEALTH AND SAFETY" is hereby
amended by adding thereto the following chapter:
CHAPTER
87
THE
23-87-1.
Short title. -- This chapter shall be known and
maybe cited as the “Rhode
23-87-2.
Legislative findings. -- It is hereby found and
declared as follows:
(1) Lupus is an
urgent national health issue. Lupus is the result of an immune system that
is unbalanced which can become destructive to any organ
or tissue in the body. Lupus is
unpredictable and potentially fatal, yet no satisfactory treatment
exists. Its health consequences
include heart attacks, strokes, seizures, and organ failure.
(2) The Lupus
Foundation of America, Inc. estimates that more than 1.5 million
Americans live with some form of lupus, including an estimated
five thousand two hundred
(5,200) people with lupus in
23-87-3.
Purpose. – The purpose of this chapter is to
create a study commission which
will develop a multi-pronged, statewide plan to educate
healthcare professionals and persons
affected with lupus about the diagnosis, management, and
treatment of lupus.
23-87-4.
Establishment of the lupus study commission. -- (a)
The director of the
department of health shall establish and coordinate a study
commission on lupus consisting of
nine (9) members, all of whom shall be appointed by the
director of the department of health. The
first chairperson shall be a representative of the Lupus
Foundation of America, Inc. and shall
serve for a two (2) year term. Subsequent chairpersons
shall be elected by the membership of the
study commission from among its members.
(b) The commission
shall be composed of:
(1) Two (2)
individuals with lupus;
(2) One scientist
with experience in lupus and who participates in various fields of
scientific endeavor, including, but not limited to, biomedical
research, social, translational,
behavioral or epidemiological research recommended by the
medical and scientific council of the
Lupus Foundation of America, Inc;
(3) Two (2)
physicians with experience in treating people with lupus and recommended
by the
(4) One nurse
practitioner with experience in treating people with lupus and
recommended by the
(5) One local
representative from the Lupus Foundation of America, Inc.;
(6) One
representative recommended by the department of health’s minority health
advisory committee; and
(7) One
representative recommended by the women’s health council of
(c) All appointments
to the study commission shall be made not later than sixty (60) days
after the effective date of this chapter. Members of the
commission shall serve terms of two (2)
years. A member may be appointed to serve not more than two
(2) terms, whether or not
consecutive.
(d) The commission
shall meet at the call of the chair and no less than on a quarterly
basis each year.
(e)
Five (5) members of the study commission shall constitute a quorum. A majority
vote
of a quorum shall be required for any official action of
the study commission.
23-87-5.
Establishment of the lupus education and awareness plan (LEAP). -- (a)
The study commission established in this chapter
shall:
(1) Analyze the
current state of education on lupus in the state;
(2) Evaluate
materials and resources currently available from government agencies,
hospitals, lupus advocacy organizations; and
(3) Identify gaps in
the current lupus education modalities in the state through a
needs
assessment or similar mechanism.
(b) Upon completing
the needs assessment described in subsection (a), the study
commission shall report on the results of its assessment to the
department of health and to the
general assembly. Utilizing the results of such assessment,
and with input from the committees of
the general assembly, having cognizance of matters
relating to public heath and the department of
health, the study commission shall develop a comprehensive
lupus education and awareness plan.
(c) The study
commission shall develop a comprehensive plan to improve education and
awareness surrounding lupus for healthcare practitioners,
public health personnel, patients, and
persons who may have lupus. The plan shall include the
recommendations on how to best:
(1) Distribute
medically-sound health information produced by the Lupus Foundation of
America, Inc., the Lupus Foundation of New England
and/or government agencies, including, but
not limited to, the National Institutes of Health, the
Centers for Disease Control and Prevention,
and the Social Security Administration, through local
health departments, schools, agencies on
aging, employer wellness programs, physicians and other health
professionals, hospitals, health
plans and health maintenance organizations, women’s health,
and nonprofit and community-
based organizations;
(2) Utilize
volunteers in the community to distribute brochures and other materials that
promote lupus education and awareness;
(3) Develop
educational materials for health professionals that identify the most recent
scientific and medical information and clinical applications
regarding the treatment of lupus;
(4) Work to increase
knowledge among physicians, nurses, and health and human
services professionals about the importance of lupus
diagnosis, treatment, and rehabilitation;
(5) Support
continuing medical education plans in the state’s leading academic
institutions by providing them the most recent scientific and
medical information and clinical
applications regarding the treatment of lupus;
(6) Conduct statewide
workshops and seminars for extensive professional development
regarding the care and management of patients with lupus in an
effort to bring the latest
information on clinical advances to care providers; and
(7) Develop and
maintain a directory of lupus-related healthcare services, that includes a
listing of healthcare providers with specialization in
services to diagnose and treat lupus and that
can be disseminated, within available appropriations, by
the department of health to individuals
with lupus, family members of those with lupus,
representatives from voluntary organizations,
healthcare professionals, health plans, local health agencies
and authorities and to other agencies
of the state.
(d) The study
commission shall report its findings and recommendations to the Rhode
Island department of health and to both chambers of
the general assembly annually on or before
December 1, commencing in 2014. The study commission may make periodic revisions to
the
plan that are consistent with the purposes of this
section.
SECTION 2. This act shall take effect upon passage.
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LC01668/SUB A
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