Bonnie's bus--cancer disparities in West Virginia, philanthropy and opportunities to build lasting partnerships.
Abstract: The State of West Virginia (WV) has significant cancer health disparities, substantiated by the fourth highest cancer mortality rate in the nation. In October 2007, Jo and Ben Statler donated $5 million dollars to the Mary Babb Randolph Cancer Center to establish a mobile mammography program (Bonnie's Bus) and endowed research positions at West Virginia University. This opportunity paved the way for an additional $2.5 million dollars of funding through a match program afforded the by WV Eminent Scholars Program and $700,000 of private foundation (Susan G. Komen for the Cure and Claude Worthington Benedum) support to begin to craft a statewide clinical trials network linked to Bonnie's Bus to provide new access to state-of-the-art clinical trials for residents of WV. Philanthropic gifts, as illustrated by the Statler gift, provide momentum for academic research and health care programs and new opportunities await through another legislative initiative--the WV Research Trust Fund. The Mary Babb Randolph Cancer Center is working to address cancer health disparities in the state of WV.
Subject: Cancer (Diagnosis)
Cancer (Care and treatment)
Cancer (Control)
Wellness programs (Usage)
Wellness programs (Finance)
Authors: Roth, Rebecca
Newhouse, Rebecca
Robinson, Beverly
Faulkner, Susan
Remick, Scot C.
Pub Date: 10/01/2009
Publication: Name: West Virginia Medical Journal Publisher: West Virginia State Medical Association Audience: Academic Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2009 West Virginia State Medical Association ISSN: 0043-3284
Issue: Date: Oct, 2009 Source Volume: 105 Source Issue: S1
Topic: Event Code: 250 Financial management Computer Subject: Company financing
Geographic: Geographic Scope: West Virginia Geographic Code: 1U5WV West Virginia
Accession Number: 218949145
Full Text: Objectives

The reader will become familiar with state of WV legislative opportunities that have the potential to transform biomedical research and learn of philanthropic opportunities that have enabled scientific and clinical partnerships in the state of WV that will position cancer care providers to better address the cancer health disparities encountered in our state.

Introduction

West Virginia (WV) is the only state in the nation whose borders are entirely contained within the geographic region of Appalachia. The cancer burden in our state is significant and cancer health disparities are very evident. While overall cancer incidence in WV is comparable to national norms, cancer mortality rates (208.6 deaths per 100,000 versus US national average of 184.0) are the fourth highest in the nation (1). Many WV counties have cancer mortality rates significantly above the national average; McDowell County is one example (1-3). McDowell, one of WV's southernmost, poorest, and most underserved counties, in a recent report has been found to have the 7th highest breast cancer mortality rate in the nation (3). Incidence and mortality rates for lung cancer, gynecological and hematological malignancies (e.g., leukemia and non-Hodgkin's lymphoma) and other tumors also exceed the national average (1,2). Major risk factors for cancer include cigarette smoking /smokeless tobacco consumption and obesity (2nd highest rates in the nation), an aging population (highest median age in the nation at 38.9 years), and among the highest prevalence of HPV-16 infection in nation for the past 50 years. Low screening rates (e.g., uninsured and underinsured), low literacy coupled with ineffective or inefficient communication of screening and healthcare opportunities to patient populations (resulting in reduced access to care and screening), and geographic challenges in getting back and forth from place of residence to points of healthcare delivery in a rural state such as WV further compound the cancer burden. These data imply that many WV communities experience limited access to cancer prevention and early diagnostic / therapeutic interventions, including access to and enrollment in clinical trials. Importantly, even when these services are available, community participation may be low. There is a particular distrust for clinical trials research among many communities (4-6). Clinical trials find better ways to prevent, diagnose, or treat cancer--challenges faced by many of our communities as alluded to above, prevent the delivery of state-of-the-art cancer treatment. There is an urgent need to examine and resolve these challenges, particularly those that hinder access to and implementation of life-saving cancer prevention and screening methods and provision for clinical trials access among WV's most underserved communities. An overarching strategic approach being developed by the Mary Babb Randolph Cancer Center with partner agencies and healthcare institutions across our state is to build capacity through highly interactive and collaborative partnerships by developing

scientific research platforms and clinical programs that fit the cancer profile (by addressing cancer health disparities) in WV and in Appalachia more generally. We are also poised to assume national cooperative partnerships as well to further grow a strong program to treat cancer.

Philanthropic Opportunities

On October 17, 2007 West Virginia University (WVU) announced the largest philanthropic gift in its history--$25 million dollars given by Jo and Ben Statler (7). The first $5 million of the gift was given to the Mary Babb Randolph Cancer Center for the purchase of a mobile digital mammography unit (The Bonnie Wells Wilson Mobile Mammography Program also known as Bonnie's Bus --see Figure 1) and endowment funds to support the launch of this program to provide breast cancer screening services for underserved residents in rural parts of the state with limited or no access to screening mammography. Additionally, these funds created two endowed positions in breast cancer research--the

Jo and Ben Statler Eminent Scholar and Chair in Breast Cancer Research and the Bonnie Wells Wilson Eminent Scholar and Distinguished Professor in Breast Cancer Research. This latter portion of their gift, for endowed faculty positions, enabled the Cancer Center to leverage an additional $2.5 million from the State of West Virginia under a matching Eminent Scholars Recruitment and Enhancement (ESRE) Program, which is specifically earmarked for the recruitment of clinical trial investigators and scientists in breast cancer and other tumor types. Cancer Center senior leadership collaborated on this important legislative initiative specifically to begin to address cancer health disparities encountered in our state by focusing on breast, lung and gynecological malignancies. This afforded the Cancer Center a powerful opportunity to begin to build vital research capacity. Thus, the overall impact of the gift to the Cancer Center represented $7.5 million in new funding.

It is important to realize, on the threshold of the launch of Bonnie's Bus, the deliberate manner in which the program is being developed--to specifically engage community and statewide partners including healthcare professionals throughout the state to ensure the best possible care for women, who choose to participate in this mobile mammography service. This will take time to evolve and we must build trust among all sectors--our clients, communities and healthcare partners. We anticipate screening many women, who unfortunately will go on to have a diagnosis of breast cancer established, and recognize that early detection saves lives (8-10). We must ensure that these women get access to the best possible care they can get as close to their home as possible--hence the notion of beginning to craft a statewide clinical trials network.

Building Capacity Through Partnerships

The Statler gift garnered national attention, which paved a new way forward to begin to construct other opportunities (11,12). The WV Affiliate of Susan G. Komen for the Cure (WV Komen) in Charleston worked with the Cancer Center on several pilot projects focusing on the roll-out of Bonnie's Bus. Subsequently, the Susan G. Komen for the Cure (Dallas, TX) national office invited the Cancer Center's application to the Breast Cancer Mortality Report Grants program, a nationally peer-reviewed research grants program, building on discussions and our plans to begin to construct a statewide clinical trials network for cancer patients and especially newly diagnosed breast cancer patients through Bonnie's Bus participation. In April 2008, the Susan G. Komen for the Cure awarded a $300,000 grant over 3 years to the Cancer Center, supporting year one launch activities for Bonnie's Bus and support toward developing a statewide clinical trials network in years two and three, which are described in more detail in this supplement. The Cancer Center also had the good fortune to engage the Claude Worthington Benedum Foundation (Pittsburgh, PA) to further support the formative phases of the WV statewide cancer clinical trials network and through a competitive review process secured an additional grant award of $400,000 over 2 years. Simply stated, the gift by the Statlers enabled the opportunity to bring the best aspects and interests of various partners to the table to address the mutual goal of addressing cancer health disparities in WV.

[FIGURE 1 OMITTED]

Jo and Ben Statler, Susan G. Komen for the Cure, and the Claude Worthington Benedum Foundation all have different individual and corporate philanthropic approaches and goals (briefly discussed below), but in this instance they were singularly complementary, and will result (all partners hope) in achieving mutual outcomes of improving access to care and reducing breast and other cancer disparities in WV. In summary, the Statler gift provided the vital departure point to leverage additional funds provided through initiatives developed by the WV State Legislature and competitive private foundation grants (Table 1).

Jo and Ben Statler Bonnie Wells Wilson was Jo's mother, who died in 1992 from breast cancer. She was a lifelong resident of western Monongalia County, WV and did not have access to early screening mammography services that may have saved her life. The opportunity to memorialize her life for the benefit of other West Virginians was very important to Jo and Ben Statler.

Susan G. Komen for the Cure The mission of the WV Affiliate of Susan G. Komen for the Cure (WV Komen) is simply to understand the breast health needs of the various communities throughout the state and raise funds to provide grants that address those needs. The need for a mobile mammography unit for the state was a directive from WV Komen's founders. This has always been seen as one of the answers to 'access to quality care' and information on follow-up care for WV's rural setting. In addition, it is important to WV Komen to be involved with initiatives that recognize socio-economic diversity to address breast health issues, and they have worked to build bridges toward greater relationships in rural community programs to bring welcome support to ideas that further the efforts of local programs.

WV Komen began its relationship in 2007 with the Cancer Center by funding a grant, Targeting a Screening Program for WV Counties with Excess Breast Mortality (PI: J. Halverson, PhD), that generated a statewide map of breast cancer mortality as well as potential routes of interest for a future mobile unit. WV Komen saw this as a critical infrastructure piece toward a future unit. WV Komen is devoted to providing and identifying collaborative avenues to ensure that all partners are aware of what is available and information on how to apply for necessary funding. Through WV Komen efforts, Komen national and community health representatives held follow-up visits with Cancer Center leaders to further identify strategies to support the mutual mission of reducing breast cancer health disparities in WV. This resulted in the competitive review and an award via the Breast Cancer Mortality Report Grants program for the launch of Bonnie's Bus and to begin to build a statewide trials network. It is undeniable that the timing of the Statler gift for a mobile mammography unit was key, which allowed these efforts to move forward much more rapidly. The WV Affiliate Community Grant program continues to work toward funding on a local level for programs influencing awareness, screening and treatment in the state. WV Komen anticipates ongoing funding toward this venture to ensure expanded awareness of not only mammography but those critical steps following diagnosis and follow-up care. This program also brings the resources for clinical trials as a necessary part of expanded care throughout the state. WV Komen has benefited greatly from these emerging opportunities to address cancer disparities and breast health in particular with the establishment of a statewide mobile mammography unit.

Claude Worthington Benedum Foundation Michael (Bridgeport) and Sarah (Blacksville) Benedum were WV natives, who wished to give back to their home state just as Jo and Ben Statler have done. The Claude Worthington Benedum Foundation is an independent foundation established in 1944 by Michael and Sarah Benedum. They named the Foundation in memory of their only child, Claude Worthington Benedum, who died in 1918 at the age of 20. The Benedums expressed their wish that grant-making be focused in WV and southwestern Pennsylvania, their native and adopted homes. Since its inception, the Foundation has authorized grants totaling more than $316 million in the areas of education, health and human services, community development, and economic development.

With the support of the Benedum Foundation, the Cancer Center will develop ways for breast cancer and other cancer patients to receive needed treatment through a new formative statewide clinical trials research network, which is being set up in conjunction with the launch of Bonnie's Bus. Clinical trials nurses and other research personnel will be stationed in key locations around the state to allow cancer patients to receive state-of-the-art treatment regardless of where they live. This was an important consideration for Benedum's participation--that this effort would build on existing infrastructure. The Benedum Foundation was also motivated by specific interests in this endeavor to provide a way to encourage and provide additional resources related to breast cancer at the regional and community levels; provide additional information, which may be useful in public policy development (e.g., reimbursement, reshaping of services, advocacy); shore up rural providers who are struggling to provide access to care; and focus on quality and improving care.

With the support of all these donors, the Cancer Center is leading networking and system-building efforts to ensure that the mobile mammography program promotes breast-screening services to WV women lacking access, provides timely and appropriate care, including access to clinical trials as needed; and builds the case for state and third party reimbursement support for early detection of breast cancer and access to care. The Cancer Center will evaluate and disseminate results to stakeholders to ensure improved health and economic outcomes and therefore future programmatic sustainability. The Cancer Center will invest in and maximize community participant engagement through focus groups and targeted marketing, and build infrastructure to link newly-diagnosed women regardless of location to a clinical care pathway "referral tree" and to clinical trials so that all WV women gain timely access to appropriate state-of-the-art care through community, regional, and statewide networks of providers.

Final Thoughts

The Statler gift has provided an unprecedented opportunity for the Mary Babb Randolph Cancer Center to embark on new collaborative partnerships across WV to more formally address the numerous cancer disparities that are encountered in the region. As Bonnie's Bus rolls out and the formative statewide clinical trials network takes shape future health initiatives may benefit from analysis of the impact of this type of gift. It is especially important as well to recognize efforts of the WV State Legislature (Senate Bill 287) by affording additional opportunities to match dollar-for-dollar endowed funds to build vital capacity for biological, biotechnological and biomedical sciences; energy and environmental sciences; nanotechnology and material science; and biometrics, security, sensing and related identification technologies research and economic development through the West Virginia Research Trust Fund challenge. This mechanism has the potential to leverage an additional $35 million dollars of endowed support at WVU and $15 million dollars at Marshall University, which would represent a $100 million total investment in our research and economic portfolios in WV. The momentum and impact provided by the Statler's generous gift cannot be overstated in addressing cancer health disparities in our state. This special supplemental issue of the West Virginia Medical Journal focuses on breast cancer and improving access and care in our state, which have been greatly afforded by the generosity of the Statlers and the new partnerships that have emanated from this opportunity.

CME Post-Test

42. T or F The state of WV has the fourth highest cancer mortality rate in the country.

43. The Jo and Ben Statler Gift to the Mary Babb Randolph Cancer Center has enabled:

a. The creation of Bonnie's Bus Mobile Mammography Program

b. Linkage to the WV Eminent Scholar Program

c. Leveraged funding from private foundations to begin to build a formative statewide clinical trials network in WV

d. All of the above

44. West Virginia has significant cancer health disparities contributed by:

a. First or second highest rates of cigarette smoking tobacco consumption and obesity in the nation.

b. Oldest median age (38.9 years) in the nation.

c. Among the highest prevalence of HPV infection in the nation.

d. All of the above.

45. The West Virginia Research Trust Fund:

a. Was announced in March 2008 that affords opportunities to match dollar-for-dollar funds to build vital capacity for biological, biotechnological and biomedical sciences among other economically driven technologies.

b. The funds are held in endowed accounts in perpetuity.

c. Marshall University is eligible to raise $15 million dollars and West Virginia University is eligible to raise $35 million dollars over a 5-year period.

d. All of the above.

References

(1.) State Cancer Profiles, through 2005 data. Go to: http://statecancerprofiles.cancer. gov. Accessioned 03/12/09.

(2.) West Virginia Cancer Registry. Go to: http://wvcancerregistry.org. Accessioned 3/12/09.

(3.) Susan G. Komen Foundation for the Cure. Breast Cancer Mortality Report and Breast Cancer Mortality Report. 2007.

(4.) Corbie-Smith G, Thomas SB, St. George DMM. Distrust, race and research. A rch Intern Med 2002; 162:2458-63.

(5.) Robinson A, Burley M, McGrail M, Drysdale M, Jones R, Rickard C. The conducting and reporting of rural health research: rurality and rural population issues. Rural and Remote Health (online), 2005: 247. Available from: http://www.rrh. org.au.

(6.) Sim I, Chan AW, Gulmezoglu AM, Evans T, Pang T. Clinical trial registration: transparency is the watchword. Lancet 2006; 367:1631-3.

(7.) Janney M. Statlers give WVU $25M. Top gift ever; first $5M goes to cancer care. Morgantown: The Dominion Post; October 18, 2007, pages 1-A, 2-A.

(8.) Fletcher SW, Elmore JG. Mammographic screening for breast cancer. N Engl J Med 2003; 348:1672-80.

(9.) Elmore JG, Reisch LM, Barton MB, Barlow WE, Rolnick S, Harris EL, Herrinton LJ, Geiger AM, Beverly RK, Hart G, Yu O, Greene SM, Weiss NS, Fletcher SW. Efficacy of breast cancer screening in the community according to risk level. JNCI 2005; 97:1035-43.

(10.) National Guidelines Clearinghouse. Go to: http://guidelines.gov. Accessioned 3/12/09.

(11.) Schackner B. Former coal executive gives WVU $25 million. Pittsburgh: Post-Gazette, October 18, 2007. Go to: http://postgazette.com. Accessioned 3/14/09.

(12.) The Chronicle of Higher Education. Gifts and Bequests. November 9, 2007. Go to: http://chronicle.com. Accessioned 3/14/09.

Rebecca Roth, MA [1] Rebecca Newhouse [2] Beverly Robinson, MSW [3] Susan Faulkner, EdD [4] Scot C. Remick, MD [4,5]

[1] Health Sciences Center, West Virginia University, Morgantown, WV

[2] State Affiliate, Susan G. Komen for the Cure, Charleston, WV.

[3] Claude Worthington Benedum Foundation, Pittsburgh, PA

[4] Mary Babb Randolph Cancer Center, West Virginia University School of Medicine, Morgantown, WV

[5] Supported in part by Susan G. Komen for the Cure, Dallas, TX and Claude Worthington Benedum Foundation grants.
Table 1. Impact of the Statler gift.

                       Funding Source                        Amount

Jo and Ben Statler gift to Mary Babb Randolph
  Cancer Center:

  *  Bonnie Wells Wilson Mobile Mammography Program       $2.5 million

  *  Jo and Ben Statler Eminent Scholar and Chair in      $1.5 million
     Breast Cancer Research *

  *  Bonnie Wells Wilson Eminent Scholar and              $1.0 million
     Distinguished Professor in Breast Cancer
     Research *

WV Eminent Scholars Recruitment and Enhancement (ESRE)    $2.5 million
  Program (* match afforded by Statler gift)

Susan G. Komen for the Cure, Dallas, TX--3-year grant       $300,000

Claude Worthington Benedum Foundation, Pittsburgh,          $400,000
  PA--2-year grant

Total funding                                             $8.2 million
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