130th Ohio General Assembly
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Sub. H. B. No. 100  As Reported by the House Health and Aging Committee
As Reported by the House Health and Aging Committee

129th General Assembly
Regular Session
Sub. H. B. No. 100

Representative Williams 

Cosponsors: Representatives Szollosi, Antonio, Yuko, Reece, Letson, Milkovich, Winburn, Foley, Heard, Hagan, R., Murray, Weddington, Fedor, Mallory, Barnes, Carney, Garland, Ramos 

To enact sections 3701.77, 3701.771, 3701.772, 3701.773, 3701.774, and 3701.775 of the Revised Code to authorize the Department of Health to create the Lupus Education and Awareness Program.

Section 1. That sections 3701.77, 3701.771, 3701.772, 3701.773, 3701.774, and 3701.775 of the Revised Code be enacted to read as follows:
Sec. 3701.77. (A) The department of health may establish, promote, and maintain a lupus education and awareness program with an emphasis on at-risk communities to raise public awareness, educate consumers, and educate and train health professionals, human services providers, and other audiences.
(B) The department, in creating and implementing the program, may 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 department 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 department may seek any federal waiver that may be necessary to maximize funds from the federal government to implement the program.
Sec. 3701.771. (A)(1) The department of health may 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 department may develop and maintain a directory of lupus-related services and health care providers with specialization in services to diagnose and treat lupus. The department may 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 department may 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. Such activities may include, but are not 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 department;
(3) Distributing information through local health departments; schools; area agencies on aging; employer wellness programs; physicians and other health professionals; hospitals and health plans; health, nonprofit, and community-based organizations; and regional offices of the department.
Sec. 3701.772. (A) The department of health may 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. If a program to award grants is established, the department 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 department.
Sec. 3701.773. (A) If the department of health establishes the intergovernmental council as permitted by division (B)(3) of section 3701.77 of the Revised Code, the department shall seek to ensure coordination of lupus education and awareness efforts. The director of health 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, and public welfare.
(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 department;
(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 department 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. 3701.774. (A) If the department of health establishes the advisory panel as permitted by division (B)(3) of section 3701.77 of the Revised Code, the department shall coordinate the panel to provide input and counsel regarding the lupus education and awareness program.
(B) If the panel is established, all of the following apply:
(1) Individuals and organizations may submit to the department 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 director of health:
(a) At least three individuals with lupus;
(b) Not more than two representatives from the department;
(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 department 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 department and the intergovernmental council with respect to the implementation of the lupus education and awareness program. The department shall consult with the advisory panel on a regular basis.
Sec. 3701.775. There is hereby created in the state treasury the lupus education and awareness program fund. If the department of health establishes the lupus education and awareness program, as autorized under section 3701.77 of the Revised Code, all moneys accepted under division (C) of that section shall be credited to the fund. Money in the fund shall be used solely to administer the lupus education and awareness program.
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, kidneys, and brain.
(B) The Lupus Foundation of America, Inc., estimates that approximately 1.5 to 2 million Americans live with lupus.
(C) According to the Centers for Disease Control and Prevention, the rate of lupus mortality has increased since the late 1970s.
(D) 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.
(E) 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.
(F) 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.
(G) 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.
(H) 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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