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| To enact sections 3701.781, 3701.782, 3701.783, | 1 |
| 3701.784, 3701.785, and 3701.786 of the Revised | 2 |
| Code to create the Lupus Education and Awareness | 3 |
| Program. | 4 |
| Section 1. That sections 3701.781, 3701.782, 3701.783, | 5 |
| 3701.784, 3701.785, and 3701.786 of the Revised Code be enacted to | 6 |
| read as follows: | 7 |
| Sec. 3701.781. (A) The commission on minority health shall | 8 |
| establish, promote, and maintain a lupus education and awareness | 9 |
| program with an emphasis on minority populations and at-risk | 10 |
| communities to raise public awareness, educate consumers, and | 11 |
| educate and train health professionals, human services providers, | 12 |
| and other audiences. | 13 |
| (B) The commission, in creating and implementing the program, | 14 |
| shall do all of the following: | 15 |
| (1) Provide sufficient staff and appropriate training to | 16 |
| implement the program; | 17 |
| (2) Establish a grant program to support nonprofit voluntary | 18 |
| health organizations with expertise in lupus to increase public | 19 |
| awareness and enhance health professional education and | 20 |
| understanding of the symptoms and consequences of lupus and the | 21 |
| populations most at risk; | 22 |
| (3) Establish an intergovernmental council and advisory panel | 23 |
| to oversee the implementation of the program; | 24 |
| (4) Identify the appropriate entities to carry out the | 25 |
| program; | 26 |
| (5) Base the program on the most current scientific | 27 |
| information and findings; | 28 |
| (6) Work with government entities, community and business | 29 |
| leaders, community organizations, health and human services | 30 |
| providers, and national, state, and local lupus organizations, | 31 |
| such as the lupus foundation of America, inc., to coordinate | 32 |
| efforts to maximize state resources in the areas of lupus | 33 |
| education and awareness; | 34 |
| (7) Identify and use other successful lupus education and | 35 |
| awareness programs and procure related materials and services from | 36 |
| organizations with appropriate expertise and knowledge of lupus. | 37 |
| (C) The commission may accept gifts, grants, and donations | 38 |
| from the federal government, foundations, organizations, medical | 39 |
| schools, and other entities for fulfilling the obligations of the | 40 |
| program. | 41 |
| (D) The commission shall seek any federal waiver that may be | 42 |
| necessary to maximize funds from the federal government to | 43 |
| implement the program. | 44 |
| Sec. 3701.782. (A)(1) The commission on minority health shall | 45 |
| conduct a needs assessment to identify all of the following: | 46 |
| (a) The level of statewide health professional and public | 47 |
| awareness about lupus; | 48 |
| (b) The existence of lupus education, awareness, and | 49 |
| treatment programs and related technical assistance available in | 50 |
| the state and nationwide; | 51 |
| (c) The lupus-related educational and support service needs | 52 |
| of health care providers in the state, including physicians, | 53 |
| nurses, health plans, and other health professionals and health | 54 |
| care entities; | 55 |
| (d) The needs of people with lupus, their families, and | 56 |
| caregivers, including health care providers, physicians, nurses, | 57 |
| health plans, and other health professionals and health care | 58 |
| entities; | 59 |
| (e) The services available to individuals with lupus, | 60 |
| including the existence and availability of lupus treatment and | 61 |
| specialty care, lupus support groups, and other related care and | 62 |
| management services. | 63 |
| (2) Based on the needs assessment, the commission shall | 64 |
| develop and maintain a directory of lupus-related services and | 65 |
| health care providers with specialization in services to diagnose | 66 |
| and treat lupus. The commission shall disseminate the directory to | 67 |
| all stakeholders, including individuals with lupus, families, | 68 |
| representatives from voluntary organizations, health | 69 |
| professionals, health plans, and state and local health agencies. | 70 |
| (B) The commission shall undertake activities to raise public | 71 |
| awareness about the symptoms of lupus, personal risk factors, and | 72 |
| options for diagnosing and treating the disease with a particular | 73 |
| focus on populations at elevated risk for lupus, including women | 74 |
| and communities of color. Such activities shall include but not be | 75 |
| limited to the following: | 76 |
| (1) Implementing a statewide campaign to educate the general | 77 |
| public about lupus by utilizing print, radio, and television | 78 |
| public service announcements, advertisements, posters, and other | 79 |
| materials; | 80 |
| (2) Disseminating health information and conducting | 81 |
| individual risk assessments at public events, such as health fairs | 82 |
| and community forums sponsored by the Ohio department of health; | 83 |
| (3) Distributing information through local health | 84 |
| departments; schools; area agencies on aging; employer wellness | 85 |
| programs; physicians and other health professionals; hospitals and | 86 |
| health plans; women's, health, nonprofit, and community-based | 87 |
| organizations; and regional offices of the Ohio department of | 88 |
| health. | 89 |
| Sec. 3701.783. (A) The commission on minority health shall | 90 |
| establish a program to award grants to educate and train | 91 |
| physicians, health professionals, and other service providers on | 92 |
| the most current, accurate scientific and medical information on | 93 |
| lupus diagnosis, treatment, and therapeutic decision-making, | 94 |
| including medical best practices for detecting and treating the | 95 |
| disease in special populations, risks and benefits of medications, | 96 |
| and research advances. In awarding grants, the commission shall | 97 |
| allocate the total amount available for the grants in amounts that | 98 |
| are proportionate to the populations of the areas served by the | 99 |
| Ohio chapters of the lupus foundation of America, inc. | 100 |
| To be eligible for a grant, an applicant must be affiliated | 101 |
| with the foundation. | 102 |
| (B) Each grant recipient shall do all of the following: | 103 |
| (1) Develop health professional educational materials that | 104 |
| identify the latest scientific and medical information and | 105 |
| clinical applications; | 106 |
| (2) Work to increase knowledge among physicians, nurses, and | 107 |
| other health and human services professionals about the importance | 108 |
| of lupus diagnosis, treatment, and rehabilitation; | 109 |
| (3) Use available curricula for training of health and human | 110 |
| services providers and community leaders on lupus detection and | 111 |
| treatment; | 112 |
| (4) Support continuing medical education programs in all | 113 |
| geographical areas of the state presented by the leading state | 114 |
| academic institutions by providing the most current information; | 115 |
| (5) Provide workshops and seminars for in-depth professional | 116 |
| development in the field of care and management of lupus patients | 117 |
| to bring the latest information on clinical advances to health | 118 |
| care providers; | 119 |
| (6) Conduct statewide conferences on lupus at appropriate | 120 |
| intervals; | 121 |
| (7) Prepare an annual report that describes the recipient's | 122 |
| use of the grant and submit a copy of the report to the | 123 |
| commission. | 124 |
| Sec. 3701.784. (A) In establishing the intergovernmental | 125 |
| council as required by division (B)(3) of section 3701.781 of the | 126 |
| Revised Code, the commission on minority health shall seek to | 127 |
| ensure coordination of lupus education and awareness efforts and | 128 |
| efforts to address health conditions disproportionately affecting | 129 |
| women and communities of color. The chairperson of the commission | 130 |
| shall serve as the council's chairperson. The council shall | 131 |
| include representatives from appropriate state departments and | 132 |
| agencies, including entities with responsibility for health | 133 |
| disparities, medicaid, public health programs, education, public | 134 |
| welfare, and women's health programs. | 135 |
| (B) The council shall do all of the following: | 136 |
| (1) Provide oversight to the lupus education and awareness | 137 |
| program, as well as other lupus programs conducted by the | 138 |
| commission; | 139 |
| (2) Develop and issue grant applications and policies and | 140 |
| procedures for programs aimed at health professionals and the | 141 |
| public; | 142 |
| (3) Establish a mechanism for sharing information on lupus | 143 |
| among all officials and employees involved in carrying out | 144 |
| lupus-related programs; | 145 |
| (4) Assist the commission and other offices in developing and | 146 |
| coordinating plans for education and health promotion on lupus and | 147 |
| ensure that issues related to lupus are integrated into other | 148 |
| statewide plans; | 149 |
| (5) Prepare an annual report that describes educational | 150 |
| initiatives on lupus sponsored by the state and make | 151 |
| recommendations for new educational initiatives on lupus. The | 152 |
| report shall be transmitted to the general assembly and be made | 153 |
| available to the public. | 154 |
| Sec. 3701.785. (A) In establishing the advisory panel as | 155 |
| required by division (B)(3) of section 3701.781 of the Revised | 156 |
| Code, the commission on minority health shall coordinate the panel | 157 |
| to provide input and counsel regarding the lupus education and | 158 |
| awareness program. | 159 |
| (B)(1) Individuals and organizations may submit to the | 160 |
| commission nominations for appointments to the panel. Each panel | 161 |
| member shall have familiarity with lupus and issues that surround | 162 |
| lupus. | 163 |
| (2) The panel shall be comprised of the following members to | 164 |
| be appointed by the commission: | 165 |
| (a) At least three individuals with lupus, at least one of | 166 |
| whom is a member of a minority group; | 167 |
| (b) Not more than two representatives from the commission; | 168 |
| (c) At least five individuals from lupus nonprofit health | 169 |
| organizations, with preference given to individuals from the lupus | 170 |
| foundation of America, inc.; | 171 |
| (d) At least five scientists or clinicians with experience in | 172 |
| lupus who participate in various fields of scientific endeavor, | 173 |
| including the fields of biomedical research, social, | 174 |
| translational, behavioral and epidemiological research, and public | 175 |
| health. | 176 |
| (3) The commission shall select from among the panel members | 177 |
| one member to serve as chairperson of the panel. | 178 |
| Members of the panel shall serve terms of two years each. | 179 |
| Members may be named to serve a total of two terms and terms may | 180 |
| be consecutive. | 181 |
| A majority of the members of the panel constitutes a quorum. | 182 |
| A majority vote of a quorum is required for any official action of | 183 |
| the panel. | 184 |
| The panel shall meet at the call of the panel chairperson, | 185 |
| but not fewer than four times per year. | 186 |
| All members shall serve without compensation, but may be | 187 |
| reimbursed for actual, necessary expenses incurred in the | 188 |
| performance of their duties. | 189 |
| (4) The panel shall be responsible for advising the | 190 |
| commission and the intergovernmental council with respect to the | 191 |
| implementation of the lupus education and awareness program. The | 192 |
| commission shall consult with the advisory panel on a regular | 193 |
| basis. | 194 |
| Sec. 3701.786. There is hereby created in the state treasury | 195 |
| the lupus education and awareness program fund. All moneys | 196 |
| accepted under division (C) of section 3701.781 of the Revised | 197 |
| Code shall be credited to the fund. The commission shall use the | 198 |
| fund to administer the lupus education and awareness program under | 199 |
| section 3701.781 of the Revised Code. | 200 |
| Section 2. The General Assembly hereby finds the following: | 201 |
| (A) Lupus is a serious, complex, and debilitating autoimmune | 202 |
| disease that can cause inflammation and tissue damage to virtually | 203 |
| any organ system in the body, including the skin, joints, other | 204 |
| connective tissue, blood and blood vessels, heart, lungs, kidney, | 205 |
| and brain. | 206 |
| (B) The Lupus Foundation of America, Inc., estimates that | 207 |
| approximately 1.5 to 2 million Americans live with lupus; lupus | 208 |
| affects women nine times more often than men and 80 per cent of | 209 |
| newly diagnosed cases of lupus develop among women of childbearing | 210 |
| age. | 211 |
| (C) Lupus disproportionately affects women of color; it is | 212 |
| two to three times more common among African Americans, Hispanics, | 213 |
| Asians, and Native Americans and is generally more prevalent in | 214 |
| minority populations. According to the Centers for Disease Control | 215 |
| and Prevention, the rate of lupus mortality has increased since | 216 |
| the late 1970's and is higher among older African-American women. | 217 |
| (D) No new drugs have been approved by the U.S. Food and Drug | 218 |
| Administration specifically for lupus in nearly 40 years and while | 219 |
| current treatments for the disease can be effective, they can | 220 |
| cause damaging side effects. | 221 |
| (E) The pain and fatigue associated with lupus can threaten | 222 |
| the ability to live independently, maintain employment, and lead a | 223 |
| normal life. One in five individuals with lupus is disabled by the | 224 |
| disease, and consequently receives support from government | 225 |
| programs, including Medicare, Medicaid, Social Security | 226 |
| Disability, and Social Security Supplemental Income. | 227 |
| (F) The estimated average annual cost of medical treatment | 228 |
| for an individual with lupus is between $10,000 and $30,000; for | 229 |
| individuals who have the most serious form of lupus, medical costs | 230 |
| can greatly exceed this amount, causing a significant economic, | 231 |
| emotional, and social burden to the entire family and society. | 232 |
| (G) More than half of individuals with lupus suffer four or | 233 |
| more years and visit three or more physicians before obtaining a | 234 |
| diagnosis of lupus; early diagnosis of and treatment for lupus can | 235 |
| prevent or reduce serious organ damage, disability, and death. | 236 |
| (H) Despite the magnitude of lupus and its impact on | 237 |
| individuals and families, health professional and public | 238 |
| understanding of lupus remains low; only one in five Americans can | 239 |
| provide basic information about lupus, and awareness of lupus is | 240 |
| lowest among adults 18 to 34 years of age - the age group most | 241 |
| likely to develop lupus. | 242 |
| (I) Lupus is a significant national health issue that | 243 |
| deserves a comprehensive and coordinated response by state and | 244 |
| federal governments with involvement of the health care provider, | 245 |
| patient, and public health communities. | 246 |
| Section 3. The purpose of this act is to create a | 247 |
| multi-pronged, statewide program to promote public and health | 248 |
| professional awareness and increase knowledge concerning the | 249 |
| causes and consequences of lupus, the importance of early | 250 |
| diagnosis and appropriate management, and effective treatment and | 251 |
| management strategies by all of the following: | 252 |
| (A) Conducting educational and training programs for health | 253 |
| professionals on lupus diagnosis and management; | 254 |
| (B) Developing and disseminating educational materials and | 255 |
| information to patients and health professionals on lupus research | 256 |
| results and health care services available; | 257 |
| (C) Designing and implementing a statewide public education | 258 |
| campaign aimed at heightening public awareness of lupus; | 259 |
| (D) Leveraging educational and training resources and | 260 |
| services previously developed by organizations with appropriate | 261 |
| expertise and knowledge of lupus. | 262 |