As Passed by the House

128th General Assembly
Regular Session
2009-2010
H. B. No. 406


Representative Williams, S. 

Cosponsors: Representatives Bacon, Belcher, Brown, Chandler, Combs, Derickson, Domenick, Foley, Goyal, Grossman, Hagan, Harris, Harwood, Heard, Hite, Letson, Luckie, Lundy, Mallory, Newcomb, Pryor, Reece, Skindell, Slesnick, Szollosi, Walter, Weddington, Williams, B., Winburn, Yuko 



A BILL
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


BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF OHIO:

       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 care 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
health and human services professionals about the importance of 108
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 in 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 care 118
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 people of color. The chairperson of the commission shall 130
serve as the council's chairperson. The council shall include 131
representatives from appropriate state departments and agencies, 132
including entities with responsibility for health disparities, 133
medicaid, public health programs, education, public welfare, and 134
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 nominations 160
to the commission to be appointed. Each panel member shall have 161
familiarity with lupus and issues that surround lupus.162

       (2) The panel shall be comprised of the following members to 163
be appointed by the commission:164

       (a) At least three individuals with lupus, at least one of 165
whom is a member of a minority group;166

       (b) Not more than two representatives from the commission;167

       (c) At least five individuals from lupus nonprofit health 168
organizations, with preference given to individuals from the lupus 169
foundation of America, inc.;170

       (d) At least five scientists or clinicians with experience in 171
lupus who participate in various fields of scientific endeavor, 172
including the fields of biomedical research, social, 173
translational, behavioral and epidemiological research, and public 174
health.175

       (3) The commission shall select from among the panel members 176
one member to serve as chairperson of the panel.177

       Members of the panel shall serve terms of two years each. 178
Members may be named to serve a total of two terms and terms may 179
be consecutive.180

       A majority of the members of the panel constitutes a quorum. 181
A majority vote of a quorum is required for any official action of 182
the panel.183

       The panel shall meet at the call of the panel chairperson, 184
but not fewer than four times per year.185

       All members shall serve without compensation, but may be 186
reimbursed for actual, necessary expenses incurred in the 187
performance of their duties.188

       (4) The panel shall be responsible for advising the 189
commission and the intergovernmental council with respect to the 190
implementation of the lupus education and awareness program. The 191
commission shall consult with the advisory panel on a regular 192
basis.193

       Sec. 3701.786. There is hereby created in the state treasury 194
the lupus education and awareness program fund. All moneys 195
accepted under division (C) of section 3701.781 of the Revised 196
Code shall be credited to the fund. The commission shall use the 197
fund to administer the lupus education and awareness program under 198
section 3701.781 of the Revised Code.199

       Section 2. The General Assembly hereby finds the following:200

       (A) Lupus is a serious, complex, debilitating autoimmune 201
disease that can cause inflammation and tissue damage to virtually 202
any organ system in the body, including the skin, joints, other 203
connective tissue, blood and blood vessels, heart, lungs, kidney, 204
and brain.205

       (B) The Lupus Foundation of America, Inc., estimates that 206
approximately 1.5 to 2 million Americans live with lupus; lupus 207
affects women nine times more often than men and 80 per cent of 208
newly diagnosed cases of lupus develop among women of childbearing 209
age.210

       (C) Lupus disproportionately affects women of color; it is 211
two to three times more common among African Americans, Hispanics, 212
Asians, and Native Americans and is generally more prevalent in 213
minority populations. According to the Centers for Disease Control 214
and Prevention, the rate of lupus mortality has increased since 215
the late 1970's and is higher among older African-American women.216

       (D) No new drugs have been approved by the U.S. Food and Drug 217
Administration specifically for lupus in nearly 40 years and while 218
current treatments for the disease can be effective, they can 219
cause damaging side effects.220

       (E) The pain and fatigue associated with lupus can threaten 221
the ability to live independently, maintain employment, and lead a 222
normal life. One in five individuals with lupus is disabled by the 223
disease, and consequently receives support from government 224
programs, including Medicare, Medicaid, Social Security 225
Disability, and Social Security Supplemental Income.226

       (F) The estimated average annual cost of medical treatment 227
for an individual with lupus is between $10,000 and $30,000; for 228
individuals who have the most serious form of lupus, medical costs 229
can greatly exceed this amount, causing a significant economic, 230
emotional, and social burden to the entire family and society.231

       (G) More than half of individuals with lupus suffer four or 232
more years and visit three or more physicians before obtaining a 233
diagnosis of lupus; early diagnosis of and treatment for lupus can 234
prevent or reduce serious organ damage, disability, and death.235

       (H) Despite the magnitude of lupus and its impact on 236
individuals and families, health professional and public 237
understanding of lupus remains low; only one in five Americans can 238
provide basic information about lupus, and awareness of lupus is 239
lowest among adults 18 to 34 years of age - the age group most 240
likely to develop lupus.241

       (I) Lupus is a significant national health issue that 242
deserves a comprehensive and coordinated response by state and 243
federal governments with involvement of the health care provider, 244
patient, and public health communities.245

       Section 3. The purpose of this act is to create a 246
multi-pronged, statewide program to promote public and health 247
professional awareness and increase knowledge concerning the 248
causes and consequences of lupus, the importance of early 249
diagnosis and appropriate management, and effective treatment and 250
management strategies by all of the following:251

       (A) Conducting educational and training programs for health 252
professionals on lupus diagnosis and management;253

       (B) Developing and disseminating educational materials and 254
information to patients and health professionals on lupus research 255
results and health care services available;256

       (C) Designing and implementing a statewide public education 257
campaign aimed at heightening public awareness of lupus;258

       (D) Leveraging educational and training resources and 259
services previously developed by organizations with appropriate 260
expertise and knowledge of lupus.261