Challenging Cancer at the Grass Roots
by James E. Casto
Listen to a North Carolina woman as she talks about the killer that has stalked her family:
"I lost my father to cancer when I was six years old—wasn't quite six when he died. I've lost two grandmothers to cancer, so it's in my family, and I'd like to find out all I could about it."
For generations, cancer has menaced Appalachia. Now many people in the Region are mobilizing efforts to learn more about the dreaded disease—and how they can fight it.
Cancer can strike young and old, rich and poor, city dweller and rural resident. But the incidence and mortality rates for some cancers are disproportionately high among low-income, rural Appalachians. That fact prompted the National Cancer Institute (NCI) to create the Appalachia Leadership Initiative on Cancer (ALIC). Now ALIC is helping communities throughout Appalachia challenge cancer—at the grassroots level.
Dr. Gilbert H. Friedell, director for cancer control at the University of Kentucky's Markey Cancer Center in Lexington, notes that the Appalachian program is the third in a series created by the National Cancer Institute in response to studies showing that some groups of Americans have higher rates of, and greater risk of developing, cancer than others. "First came a program for African-Americans, then one for Hispanics. After that, some of us in Appalachia began pointing out that much the same problem seemed to be the case in our geographic region."
Responding, NCI in 1992 made awards to institutions located within Appalachia to develop four separate—but closely related—projects, which collectively make up ALIC. Each of the four has a steering committee, a principal investigator, and a program manager, but no two are organized or operated exactly alike.
Friedell is chairman of ALIC's steering committee and principal investigator for the Central Highlands Appalachia Leadership Initiative on Cancer (CHALIC), which is based in Lexington, Kentucky, and serves Kentucky, Tennessee, and Virginia. The North Central Appalachia Leadership Initiative on Cancer (NCALIC), at West Virginia University's Mary Babb Randolph Cancer Center in Morgantown, serves West Virginia and Ohio. The Southern Appalachia Leadership Initiative on Cancer (SALIC), operated by the North Carolina Cooperative Extension Service at North Carolina State University in Raleigh, serves North and South Carolina and Georgia. And the Northern Appalachia Leadership Initiative on Cancer (NALIC) serves Maryland, New York, and Pennsylvania from Pennsylvania State University in University Park.
While each of the projects is set up a bit differently, each recognizes, explains Friedell, "that in order to achieve our goals, we must have involvement at the community level—community coalitions that include local leaders. The underlying thinking is that the projects must function in a 'bottom-up,' not 'top-down,' fashion. People have to be able to participate and make their voices heard. You can't just tell people what to do. They have to want to do."
The program's flexible approach regarding organization provides an opportunity to find out what methods work best. Those lessons may then be transferred to other regions of the country which, like Appalachia, have substantial numbers of rural poor who are medically underserved.
"Yet, for all the flexibility," notes Friedell, "we agreed that all four projects needed to have at least some common threads to help us evaluate the effectiveness of their different approaches. So all four are focusing on a goal of trying to increase screening for cervical and breast cancer among low-income, older women."
Dozens of communities are involved and dozen of approaches are being tried.
Ann J. Ward, project manager for NALIC at Penn State, notes, for example, that the Coalition for People Against Cancer has sponsored visits by a mobile mammography van to the rural areas of Pennsylvania's Clearfield County, while members of the Venango/Forest Cancer Coalition and the Crawford County Cancer Coalition, in partnership with local Area Agencies on Aging and Meals on Wheels programs, have developed cancer education programs especially tailored to elderly residents of those communities.
Ward says she's "especially proud" of the little town of Coalport in Clearfield County. "They only have a population of a few hundred people, but at last report they had screened 128 women. How? Because there was a network of women, some of them cancer survivors, who were committed to making it happen."
NALIC tapped into one of Appalachia's oldest traditions, storytelling, when it had Linda M. Park-Fuller, a performer, educator, and cancer survivor, conduct a televised workshop to train women volunteers to speak to groups about their experiences with cancer.
Says Park-Fuller: "If we tell only our 'tales of woe,' that is what our lives will have been, and ourselves but victims. If, on the other hand, we tell our stories of meeting life's challenges—including health challenges—with unassuming honesty, humor, and dignity, our lives will reflect those qualities, and we will see the teller we have shaped shape, in turn, ourself as a poised and confident survivor—a self that we can live and die with—a self we can respect."
Cancer survivors, particularly women who have survived breast cancer, are tremendously effective at spreading the message, says Ward. "There's nothing more powerful and effective than a woman who is willing to tell her own story of how she faced her cancer and how she's now getting on with her life."
Carol Mangone, NCALIC project manager at West Virginia University, reports that local coalitions have used a variety of settings—from courthouse rallies and potluck dinners to bingo parties and county fairs—to spread the word about the importance of cancer screening.
In West Virginia, the Hampshire County Women's Cancer Coalition has developed a section of the county library devoted specifically to material dealing with cancer issues; the Roane Cancer Education Coalition has devised a cancer education program it calls "Bank on Health" for employees at local banks; and the Wetzel Health Intervention on Cancer Coalition has made appearances at meetings of more than a dozen community groups, encouraging women to sign "contracts" stating that they will talk with six other women about the importance of early cancer detection.
Similar ALIC-coordinated grassroots efforts are under way in communities all across Appalachia.
Will those efforts be successful? Will they make a difference in the Region's cancer rate? It's much too early to tell, although the early results are certainly encouraging.
"You have to keep in mind," cautions Friedell, "that this is a research program. We don't know the right mechanism to achieve earlier cancer detection and treatment. That's exactly what we're trying to find out."
For the moment, the program's success can be measured in terms of the number of people it reaches with its lifesaving message.
Earlier Diagnosis Is One Goal
"We won't know for quite a while if our efforts are making any real difference in the death rate," says Friedell. "But there are other yardsticks we can use. We know, for example, that breast cancer is being diagnosed later in parts of Appalachia than elsewhere in the nation. It won't be hard to see if we're making any headway in getting cases diagnosed sooner—and thus getting [cancer patients] treated sooner."
ALIC is now in the last year of what originally was envisioned as a five-year program.
"We've been assured by NCI that we will have two more years of funding," says Friedell. "So that means we have three years to determine if this approach is useful. Our next step is to move from pure research into facilitating the transfer of support from the federal government to local and state levels. We've talked a lot about 'sowing seeds.' Now we will find out if those seeds have fallen on fertile ground and have taken root."
ALIC will take stock of its accomplishments and attempt to chart its future at a programwide Summit scheduled for July 10–13 in Washington, D.C. More than 75 local coalitions from across Appalachia have been invited to participate in the event.
"The Summit," says Friedell, "won't be an end, but a beginning, a springboard to the program's future."
James E. Casto is associate editor of the Herald-Dispatch in Huntington, West Virginia.