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| To enact sections 3701.77, 3701.771, 3701.772, | 1 |
| 3701.773, 3701.774, and 3701.775 of the Revised | 2 |
| Code to authorize the Department of Health to | 3 |
| create the Lupus Education and Awareness Program. | 4 |
| Section 1. That sections 3701.77, 3701.771, 3701.772, | 5 |
| 3701.773, 3701.774, and 3701.775 of the Revised Code be enacted to | 6 |
| read as follows: | 7 |
| Sec. 3701.77. (A) The department of health may establish, | 8 |
| promote, and maintain a lupus education and awareness program with | 9 |
| an emphasis on at-risk communities to raise public awareness, | 10 |
| educate consumers, and educate and train health professionals, | 11 |
| human services providers, and other audiences. | 12 |
| (B) The department, in creating and implementing the program, | 13 |
| may do all of the following: | 14 |
| (1) Provide sufficient staff and appropriate training to | 15 |
| implement the program; | 16 |
| (2) Establish a grant program to support nonprofit voluntary | 17 |
| health organizations with expertise in lupus to increase public | 18 |
| awareness and enhance health professional education and | 19 |
| understanding of the symptoms and consequences of lupus and the | 20 |
| populations most at risk; | 21 |
| (3) Establish an intergovernmental council and advisory panel | 22 |
| to oversee the implementation of the program; | 23 |
| (4) Identify the appropriate entities to carry out the | 24 |
| program; | 25 |
| (5) Base the program on the most current scientific | 26 |
| information and findings; | 27 |
| (6) Work with government entities, community and business | 28 |
| leaders, community organizations, health and human services | 29 |
| providers, and national, state, and local lupus organizations, | 30 |
| such as the lupus foundation of America, inc., to coordinate | 31 |
| efforts to maximize state resources in the areas of lupus | 32 |
| education and awareness; | 33 |
| (7) Identify and use other successful lupus education and | 34 |
| awareness programs and procure related materials and services from | 35 |
| organizations with appropriate expertise and knowledge of lupus. | 36 |
| (C) The department may accept gifts, grants, and donations | 37 |
| from the federal government, foundations, organizations, medical | 38 |
| schools, and other entities for fulfilling the obligations of the | 39 |
| program. | 40 |
| (D) The department may seek any federal waiver that may be | 41 |
| necessary to maximize funds from the federal government to | 42 |
| implement the program. | 43 |
| Sec. 3701.771. (A)(1) The department of health may conduct a | 44 |
| needs assessment to identify all of the following: | 45 |
| (a) The level of statewide health professional and public | 46 |
| awareness about lupus; | 47 |
| (b) The existence of lupus education, awareness, and | 48 |
| treatment programs and related technical assistance available in | 49 |
| the state and nationwide; | 50 |
| (c) The lupus-related educational and support service needs | 51 |
| of health care providers in the state, including physicians, | 52 |
| nurses, health plans, and other health professionals and health | 53 |
| care entities; | 54 |
| (d) The needs of people with lupus, their families, and | 55 |
| caregivers, including health care providers, physicians, nurses, | 56 |
| health plans, and other health professionals and health care | 57 |
| entities; | 58 |
| (e) The services available to individuals with lupus, | 59 |
| including the existence and availability of lupus treatment and | 60 |
| specialty care, lupus support groups, and other related care and | 61 |
| management services. | 62 |
| (2) Based on the needs assessment, the department may develop | 63 |
| and maintain a directory of lupus-related services and health care | 64 |
| providers with specialization in services to diagnose and treat | 65 |
| lupus. The department may disseminate the directory to all | 66 |
| stakeholders, including individuals with lupus, families, | 67 |
| representatives from voluntary organizations, health | 68 |
| professionals, health plans, and state and local health agencies. | 69 |
| (B) The department may undertake activities to raise public | 70 |
| awareness about the symptoms of lupus, personal risk factors, and | 71 |
| options for diagnosing and treating the disease with a particular | 72 |
| focus on populations at elevated risk for lupus. Such activities | 73 |
| may include, but are not limited to, the following: | 74 |
| (1) Implementing a statewide campaign to educate the general | 75 |
| public about lupus by utilizing print, radio, and television | 76 |
| public service announcements, advertisements, posters, and other | 77 |
| materials; | 78 |
| (2) Disseminating health information and conducting | 79 |
| individual risk assessments at public events, such as health fairs | 80 |
| and community forums sponsored by the department; | 81 |
| (3) Distributing information through local health | 82 |
| departments; schools; area agencies on aging; employer wellness | 83 |
| programs; physicians and other health professionals; hospitals and | 84 |
| health plans; health, nonprofit, and community-based | 85 |
| organizations; and regional offices of the department. | 86 |
| Sec. 3701.772. (A) The department of health may establish a | 87 |
| program to award grants to educate and train physicians, health | 88 |
| professionals, and other service providers on the most current, | 89 |
| accurate scientific and medical information on lupus diagnosis, | 90 |
| treatment, and therapeutic decision-making, including medical best | 91 |
| practices for detecting and treating the disease in special | 92 |
| populations, risks and benefits of medications, and research | 93 |
| advances. If a program to award grants is established, the | 94 |
| department shall allocate the total amount available for the | 95 |
| grants in amounts that are proportionate to the populations of the | 96 |
| areas served by the Ohio chapters of the lupus foundation of | 97 |
| America, inc. | 98 |
| To be eligible for a grant, an applicant must be affiliated | 99 |
| with the foundation. | 100 |
| (B) Each grant recipient shall do all of the following: | 101 |
| (1) Develop health professional educational materials that | 102 |
| identify the latest scientific and medical information and | 103 |
| clinical applications; | 104 |
| (2) Work to increase knowledge among physicians, nurses, and | 105 |
| other health and human services professionals about the importance | 106 |
| of lupus diagnosis, treatment, and rehabilitation; | 107 |
| (3) Use available curricula for training of health and human | 108 |
| services providers and community leaders on lupus detection and | 109 |
| treatment; | 110 |
| (4) Support continuing medical education programs in all | 111 |
| geographical areas of the state presented by the leading state | 112 |
| academic institutions by providing the most current information; | 113 |
| (5) Provide workshops and seminars for in-depth professional | 114 |
| development in the field of care and management of lupus patients | 115 |
| to bring the latest information on clinical advances to health | 116 |
| care providers; | 117 |
| (6) Conduct statewide conferences on lupus at appropriate | 118 |
| intervals; | 119 |
| (7) Prepare an annual report that describes the recipient's | 120 |
| use of the grant and submit a copy of the report to the | 121 |
| department. | 122 |
| Sec. 3701.773. (A) If the department of health establishes | 123 |
| the intergovernmental council as permitted by division (B)(3) of | 124 |
| section 3701.77 of the Revised Code, the department shall seek to | 125 |
| ensure coordination of lupus education and awareness efforts. The | 126 |
| director of health shall serve as the council's chairperson. The | 127 |
| council shall include representatives from appropriate state | 128 |
| departments and agencies, including entities with responsibility | 129 |
| for health disparities, medicaid, public health programs, | 130 |
| education, and public welfare. | 131 |
| (B) The council shall do all of the following: | 132 |
| (1) Provide oversight to the lupus education and awareness | 133 |
| program, as well as other lupus programs conducted by the | 134 |
| department; | 135 |
| (2) Develop and issue grant applications and policies and | 136 |
| procedures for programs aimed at health professionals and the | 137 |
| public; | 138 |
| (3) Establish a mechanism for sharing information on lupus | 139 |
| among all officials and employees involved in carrying out | 140 |
| lupus-related programs; | 141 |
| (4) Assist the department and other offices in developing and | 142 |
| coordinating plans for education and health promotion on lupus and | 143 |
| ensure that issues related to lupus are integrated into other | 144 |
| statewide plans; | 145 |
| (5) Prepare an annual report that describes educational | 146 |
| initiatives on lupus sponsored by the state and make | 147 |
| recommendations for new educational initiatives on lupus. The | 148 |
| report shall be transmitted to the general assembly and be made | 149 |
| available to the public. | 150 |
| Sec. 3701.774. (A) If the department of health establishes | 151 |
| the advisory panel as permitted by division (B)(3) of section | 152 |
| 3701.77 of the Revised Code, the department shall coordinate the | 153 |
| panel to provide input and counsel regarding the lupus education | 154 |
| and awareness program. | 155 |
| (B) If the panel is established, all of the following apply: | 156 |
| (1) Individuals and organizations may submit to the | 157 |
| department nominations for appointments to the panel. Each panel | 158 |
| member shall have familiarity with lupus and issues that surround | 159 |
| lupus. | 160 |
| (2) The panel shall be comprised of the following members to | 161 |
| be appointed by the director of health: | 162 |
| (a) At least three individuals with lupus; | 163 |
| (b) Not more than two representatives from the department; | 164 |
| (c) At least five individuals from lupus nonprofit health | 165 |
| organizations, with preference given to individuals from the lupus | 166 |
| foundation of America, inc.; | 167 |
| (d) At least five scientists or clinicians with experience in | 168 |
| lupus who participate in various fields of scientific endeavor, | 169 |
| including the fields of biomedical research, social, | 170 |
| translational, behavioral and epidemiological research, and public | 171 |
| health. | 172 |
| (3) The department shall select from among the panel members | 173 |
| one member to serve as chairperson of the panel. | 174 |
| Members of the panel shall serve terms of two years each. | 175 |
| Members may be named to serve a total of two terms and terms may | 176 |
| be consecutive. | 177 |
| A majority of the members of the panel constitutes a quorum. | 178 |
| A majority vote of a quorum is required for any official action of | 179 |
| the panel. | 180 |
| The panel shall meet at the call of the panel chairperson, | 181 |
| but not fewer than four times per year. | 182 |
| All members shall serve without compensation, but may be | 183 |
| reimbursed for actual, necessary expenses incurred in the | 184 |
| performance of their duties. | 185 |
| (4) The panel shall be responsible for advising the | 186 |
| department and the intergovernmental council with respect to the | 187 |
| implementation of the lupus education and awareness program. The | 188 |
| department shall consult with the advisory panel on a regular | 189 |
| basis. | 190 |
| Sec. 3701.775. There is hereby created in the state treasury | 191 |
| the lupus education and awareness program fund. If the department | 192 |
| of health establishes the lupus education and awareness program, | 193 |
| as autorized under section 3701.77 of the Revised Code, all moneys | 194 |
| accepted under division (C) of that section shall be credited to | 195 |
| the fund. Money in the fund shall be used solely to administer the | 196 |
| lupus education and awareness program. | 197 |
| Section 2. The General Assembly hereby finds the following: | 198 |
| (A) Lupus is a serious, complex, and debilitating autoimmune | 199 |
| disease that can cause inflammation and tissue damage to virtually | 200 |
| any organ system in the body, including the skin, joints, other | 201 |
| connective tissue, blood and blood vessels, heart, lungs, kidneys, | 202 |
| and brain. | 203 |
| (B) The Lupus Foundation of America, Inc., estimates that | 204 |
| approximately 1.5 to 2 million Americans live with lupus. | 205 |
| (C) According to the Centers for Disease Control and | 206 |
| Prevention, the rate of lupus mortality has increased since the | 207 |
| late 1970s. | 208 |
| (D) The pain and fatigue associated with lupus can threaten | 209 |
| the ability to live independently, maintain employment, and lead a | 210 |
| normal life. One in five individuals with lupus is disabled by the | 211 |
| disease, and consequently receives support from government | 212 |
| programs, including Medicare, Medicaid, Social Security | 213 |
| Disability, and Social Security Supplemental Income. | 214 |
| (E) The estimated average annual cost of medical treatment | 215 |
| for an individual with lupus is between $10,000 and $30,000; for | 216 |
| individuals who have the most serious form of lupus, medical costs | 217 |
| can greatly exceed this amount, causing a significant economic, | 218 |
| emotional, and social burden to the entire family and society. | 219 |
| (F) More than half of individuals with lupus suffer four or | 220 |
| more years and visit three or more physicians before obtaining a | 221 |
| diagnosis of lupus; early diagnosis of and treatment for lupus can | 222 |
| prevent or reduce serious organ damage, disability, and death. | 223 |
| (G) Despite the magnitude of lupus and its impact on | 224 |
| individuals and families, health professional and public | 225 |
| understanding of lupus remains low; only one in five Americans can | 226 |
| provide basic information about lupus, and awareness of lupus is | 227 |
| lowest among adults 18 to 34 years of age - the age group most | 228 |
| likely to develop lupus. | 229 |
| (H) Lupus is a significant national health issue that | 230 |
| deserves a comprehensive and coordinated response by state and | 231 |
| federal governments with involvement of the health care provider, | 232 |
| patient, and public health communities. | 233 |
| Section 3. The purpose of this act is to create a | 234 |
| multi-pronged, statewide program to promote public and health | 235 |
| professional awareness and increase knowledge concerning the | 236 |
| causes and consequences of lupus, the importance of early | 237 |
| diagnosis and appropriate management, and effective treatment and | 238 |
| management strategies by all of the following: | 239 |
| (A) Conducting educational and training programs for health | 240 |
| professionals on lupus diagnosis and management; | 241 |
| (B) Developing and disseminating educational materials and | 242 |
| information to patients and health professionals on lupus research | 243 |
| results and health care services available; | 244 |
| (C) Designing and implementing a statewide public education | 245 |
| campaign aimed at heightening public awareness of lupus; | 246 |
| (D) Leveraging educational and training resources and | 247 |
| services previously developed by organizations with appropriate | 248 |
| expertise and knowledge of lupus. | 249 |