Bill Text: OH HB406 | 2009-2010 | 128th General Assembly | Engrossed

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Bill Title: To create the Lupus Education and Awareness Program.

Spectrum: Moderate Partisan Bill (Democrat 25-6)

Status: (Engrossed - Dead) 2010-06-08 - To Health, Human Services, & Aging [HB406 Detail]

Download: Ohio-2009-HB406-Engrossed.html

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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 

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A BILL

To enact sections 3701.781, 3701.782, 3701.783,

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3701.784, 3701.785, and 3701.786 of the Revised

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Code to create the Lupus Education and Awareness

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Program.

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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:

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(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:

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(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;

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(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:

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(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