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H. B. No. 100 As IntroducedAs Introduced
129th General Assembly | Regular Session | 2011-2012 |
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Cosponsors:
Representatives Szollosi, Antonio, Yuko, Reece, Letson, Milkovich, Winburn, Foley, Heard, Hagan, Murray, Weddington, Fedor, Mallory
A BILL
To enact sections 3701.781, 3701.782, 3701.783,
3701.784, 3701.785, and 3701.786 of the Revised
Code to create the Lupus Education and Awareness
Program.
BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF OHIO:
Section 1. That sections 3701.781, 3701.782, 3701.783,
3701.784, 3701.785, and 3701.786 of the Revised Code be enacted to
read as follows:
Sec. 3701.781. (A) The commission on minority health shall
establish, promote, and maintain a lupus education and awareness
program with an emphasis on minority populations and at-risk
communities to raise public awareness, educate consumers, and
educate and train health professionals, human services providers,
and other audiences.
(B) The commission, in creating and implementing the program,
shall do all of the following:
(1) Provide sufficient staff and appropriate training to
implement the program;
(2) Establish a grant program to support nonprofit voluntary
health organizations with expertise in lupus to increase public
awareness and enhance health professional education and
understanding of the symptoms and consequences of lupus and the
populations most at risk;
(3) Establish an intergovernmental council and advisory panel
to oversee the implementation of the program;
(4) Identify the appropriate entities to carry out the
program;
(5) Base the program on the most current scientific
information and findings;
(6) Work with government entities, community and business
leaders, community organizations, health and human services
providers, and national, state, and local lupus organizations,
such as the lupus foundation of America, inc., to coordinate
efforts to maximize state resources in the areas of lupus
education and awareness;
(7) Identify and use other successful lupus education and
awareness programs and procure related materials and services from
organizations with appropriate expertise and knowledge of lupus.
(C) The commission may accept gifts, grants, and donations
from the federal government, foundations, organizations, medical
schools, and other entities for fulfilling the obligations of the
program.
(D) The commission shall seek any federal waiver that may be
necessary to maximize funds from the federal government to
implement the program.
Sec. 3701.782. (A)(1) The commission on minority health shall
conduct a needs assessment to identify all of the following:
(a) The level of statewide health professional and public
awareness about lupus;
(b) The existence of lupus education, awareness, and
treatment programs and related technical assistance available in
the state and nationwide;
(c) The lupus-related educational and support service needs
of health care providers in the state, including physicians,
nurses, health plans, and other health professionals and health
care entities;
(d) The needs of people with lupus, their families, and
caregivers, including health care providers, physicians, nurses,
health plans, and other health professionals and health care
entities;
(e) The services available to individuals with lupus,
including the existence and availability of lupus treatment and
specialty care, lupus support groups, and other related care and
management services.
(2) Based on the needs assessment, the commission shall
develop and maintain a directory of lupus-related services and
health care providers with specialization in services to diagnose
and treat lupus. The commission shall disseminate the directory to
all stakeholders, including individuals with lupus, families,
representatives from voluntary organizations, health
professionals, health plans, and state and local health agencies.
(B) The commission shall undertake activities to raise public
awareness about the symptoms of lupus, personal risk factors, and
options for diagnosing and treating the disease with a particular
focus on populations at elevated risk for lupus, including women
and communities of color. Such activities shall include but not be
limited to the following:
(1) Implementing a statewide campaign to educate the general
public about lupus by utilizing print, radio, and television
public service announcements, advertisements, posters, and other
materials;
(2) Disseminating health information and conducting
individual risk assessments at public events, such as health fairs
and community forums sponsored by the Ohio department of health;
(3) Distributing information through local health
departments; schools; area agencies on aging; employer wellness
programs; physicians and other health professionals; hospitals and
health plans; women's, health, nonprofit, and community-based
organizations; and regional offices of the Ohio department of
health.
Sec. 3701.783. (A) The commission on minority health shall
establish a program to award grants to educate and train
physicians, health professionals, and other service providers on
the most current, accurate scientific and medical information on
lupus diagnosis, treatment, and therapeutic decision-making,
including medical best practices for detecting and treating the
disease in special populations, risks and benefits of medications,
and research advances. In awarding grants, the commission shall
allocate the total amount available for the grants in amounts that
are proportionate to the populations of the areas served by the
Ohio chapters of the lupus foundation of America, inc.
To be eligible for a grant, an applicant must be affiliated
with the foundation.
(B) Each grant recipient shall do all of the following:
(1) Develop health professional educational materials that
identify the latest scientific and medical information and
clinical applications;
(2) Work to increase knowledge among physicians, nurses, and
other health and human services professionals about the importance
of lupus diagnosis, treatment, and rehabilitation;
(3) Use available curricula for training of health and human
services providers and community leaders on lupus detection and
treatment;
(4) Support continuing medical education programs in all
geographical areas of the state presented by the leading state
academic institutions by providing the most current information;
(5) Provide workshops and seminars for in-depth professional
development in the field of care and management of lupus patients
to bring the latest information on clinical advances to health
care providers;
(6) Conduct statewide conferences on lupus at appropriate
intervals;
(7) Prepare an annual report that describes the recipient's
use of the grant and submit a copy of the report to the
commission.
Sec. 3701.784. (A) In establishing the intergovernmental
council as required by division (B)(3) of section 3701.781 of the
Revised Code, the commission on minority health shall seek to
ensure coordination of lupus education and awareness efforts and
efforts to address health conditions disproportionately affecting
women and communities of color. The chairperson of the commission
shall serve as the council's chairperson. The council shall
include representatives from appropriate state departments and
agencies, including entities with responsibility for health
disparities, medicaid, public health programs, education, public
welfare, and women's health programs.
(B) The council shall do all of the following:
(1) Provide oversight to the lupus education and awareness
program, as well as other lupus programs conducted by the
commission;
(2) Develop and issue grant applications and policies and
procedures for programs aimed at health professionals and the
public;
(3) Establish a mechanism for sharing information on lupus
among all officials and employees involved in carrying out
lupus-related programs;
(4) Assist the commission and other offices in developing and
coordinating plans for education and health promotion on lupus and
ensure that issues related to lupus are integrated into other
statewide plans;
(5) Prepare an annual report that describes educational
initiatives on lupus sponsored by the state and make
recommendations for new educational initiatives on lupus. The
report shall be transmitted to the general assembly and be made
available to the public.
Sec. 3701.785. (A) In establishing the advisory panel as
required by division (B)(3) of section 3701.781 of the Revised
Code, the commission on minority health shall coordinate the panel
to provide input and counsel regarding the lupus education and
awareness program.
(B)(1) Individuals and organizations may submit to the
commission nominations for appointments to the panel. Each panel
member shall have familiarity with lupus and issues that surround
lupus.
(2) The panel shall be comprised of the following members to
be appointed by the commission:
(a) At least three individuals with lupus, at least one of
whom is a member of a minority group;
(b) Not more than two representatives from the commission;
(c) At least five individuals from lupus nonprofit health
organizations, with preference given to individuals from the lupus
foundation of America, inc.;
(d) At least five scientists or clinicians with experience in
lupus who participate in various fields of scientific endeavor,
including the fields of biomedical research, social,
translational, behavioral and epidemiological research, and public
health.
(3) The commission shall select from among the panel members
one member to serve as chairperson of the panel.
Members of the panel shall serve terms of two years each.
Members may be named to serve a total of two terms and terms may
be consecutive.
A majority of the members of the panel constitutes a quorum.
A majority vote of a quorum is required for any official action of
the panel.
The panel shall meet at the call of the panel chairperson,
but not fewer than four times per year.
All members shall serve without compensation, but may be
reimbursed for actual, necessary expenses incurred in the
performance of their duties.
(4) The panel shall be responsible for advising the
commission and the intergovernmental council with respect to the
implementation of the lupus education and awareness program. The
commission shall consult with the advisory panel on a regular
basis.
Sec. 3701.786. There is hereby created in the state treasury
the lupus education and awareness program fund. All moneys
accepted under division (C) of section 3701.781 of the Revised
Code shall be credited to the fund. The commission shall use the
fund to administer the lupus education and awareness program under
section 3701.781 of the Revised Code.
Section 2. The General Assembly hereby finds the following:
(A) Lupus is a serious, complex, and debilitating autoimmune
disease that can cause inflammation and tissue damage to virtually
any organ system in the body, including the skin, joints, other
connective tissue, blood and blood vessels, heart, lungs, kidney,
and brain.
(B) The Lupus Foundation of America, Inc., estimates that
approximately 1.5 to 2 million Americans live with lupus; lupus
affects women nine times more often than men and 80 per cent of
newly diagnosed cases of lupus develop among women of childbearing
age.
(C) Lupus disproportionately affects women of color; it is
two to three times more common among African Americans, Hispanics,
Asians, and Native Americans and is generally more prevalent in
minority populations. According to the Centers for Disease Control
and Prevention, the rate of lupus mortality has increased since
the late 1970's and is higher among older African-American women.
(D) No new drugs have been approved by the U.S. Food and Drug
Administration specifically for lupus in nearly 40 years and while
current treatments for the disease can be effective, they can
cause damaging side effects.
(E) The pain and fatigue associated with lupus can threaten
the ability to live independently, maintain employment, and lead a
normal life. One in five individuals with lupus is disabled by the
disease, and consequently receives support from government
programs, including Medicare, Medicaid, Social Security
Disability, and Social Security Supplemental Income.
(F) The estimated average annual cost of medical treatment
for an individual with lupus is between $10,000 and $30,000; for
individuals who have the most serious form of lupus, medical costs
can greatly exceed this amount, causing a significant economic,
emotional, and social burden to the entire family and society.
(G) More than half of individuals with lupus suffer four or
more years and visit three or more physicians before obtaining a
diagnosis of lupus; early diagnosis of and treatment for lupus can
prevent or reduce serious organ damage, disability, and death.
(H) Despite the magnitude of lupus and its impact on
individuals and families, health professional and public
understanding of lupus remains low; only one in five Americans can
provide basic information about lupus, and awareness of lupus is
lowest among adults 18 to 34 years of age - the age group most
likely to develop lupus.
(I) Lupus is a significant national health issue that
deserves a comprehensive and coordinated response by state and
federal governments with involvement of the health care provider,
patient, and public health communities.
Section 3. The purpose of this act is to create a
multi-pronged, statewide program to promote public and health
professional awareness and increase knowledge concerning the
causes and consequences of lupus, the importance of early
diagnosis and appropriate management, and effective treatment and
management strategies by all of the following:
(A) Conducting educational and training programs for health
professionals on lupus diagnosis and management;
(B) Developing and disseminating educational materials and
information to patients and health professionals on lupus research
results and health care services available;
(C) Designing and implementing a statewide public education
campaign aimed at heightening public awareness of lupus;
(D) Leveraging educational and training resources and
services previously developed by organizations with appropriate
expertise and knowledge of lupus.
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