It’s an enduring fact: You’re more likely to die from cancer if you live in rural Appalachia than if you live anywhere else in this country.

According to a 2016 University of Virginia study, between 1969 and 2011, the incidence of cancer declined in all regions of the U.S except rural Appalachia. And while the rate of people who died from cancer declined throughout the country, in Appalachia disparities persisted. Rural Appalachia has the highest cancer mortality rate; urban non‐Appalachia, the lowest. 

Saving lives that would be lost to cancer requires multidimensional strategies. A recently announced $11 million National Cancer Institute grant is facilitating one such effort. A team of researchers from four universities – Ohio State University, West Virginia University, the University of Kentucky and the University of Virginia – is poised to address a form of cancer that’s disproportionately high in rural Appalachia and one that’s entirely preventable: cervical cancer. 

The researchers will be collaborating with 10 health-care systems serving at-risk communities throughout Appalachian Kentucky, Ohio, Virginia and West Virginia.

“This region has one of the highest rates of cervical cancer and cervical cancer deaths in the United States,” lead investigator Electra Paskett, a professor in Ohio State’s colleges of Medicine and Public Health, said in a press release announcing the grant. “We know that smoking tobacco products, HPV infection and lack of timely cervical cancer screening play a significant role in these exceptionally high rates.”

The project will comprise three initiatives to be implemented through clinics and health centers in the region. They include at-home HPV screening, interventions to improve HPV vaccination rates among young people, and smoking-cessation counseling and nicotine-replacement therapy. 

Barriers to Care

“Cervical cancer is 100 percent preventable,” said Stephenie Kennedy-Rea, the West Virginia University Cancer Institute’s associate director for Cancer Control and Prevention and a recipient of the NCI grant. “We have a test that identifies pre-cancerous cells and we have a preventive vaccine. There’s no reason we should have people being diagnosed with late-stage cervical cancer.” 

Karen Winkfield, director of the Office of Cancer Health Equity at Wake Forest Baptist Comprehensive Cancer Center in Winston-Salem, North Carolina, agrees: “Cervical cancer is one of the cancers that we have done an amazing job at preventing.”

But rural Appalachians are being screened and vaccinated at lower rates than other parts of the country. Access to care is a primary reason.

According to a 2016 American Society of Clinical Oncology “State of Cancer Care in America” report, half of all hematologists and oncologists practice in just eight states, all with high percentages of urban residents: California, New York, Texas, Florida, Pennsylvania, Massachusetts, Ohio and Illinois.

“In places like Appalachia, we just don’t have that many providers who can care for individuals close to home,” said Winkfield, who recently served as chair of ASCO’s Health Disparities Committee. Access to transportation is often an issue; the cost of travel is another.

Education – unawareness of the care you need and the care that’s available – also plays a role, Kennedy-Rea said. 

The prevalence of smokers is another factor. Data for 2017 indicates that West Virginia has the highest adult smoking rate in the country, 26 percent, up a percentage point from the previous year, with Kentucky close behind, at 24.6 percent. 

“It’s hard to point to any one factor,” Kennedy-Rea said. “It’s often a combination.”

In many rural Appalachian communities, a strong tradition of individualism and a reluctance to admit to illness prevail, as do deeply ceded religious beliefs, a conviction that God will heal, or that cancer is God’s will and there’s nothing to be done about it. 

Winkfield acknowledges that traditions and beliefs are sometimes factors, but believes that it’s generally more complicated – that when such considerations do come into play, they’re often intertwined with the inherent challenges, the socioeconomic barriers.

“It’s almost putting blinders on, in some ways, because of the challenges. It’s more about, ‘What can I do about it?’” she said. “If you go and you get screened for a cancer and you’re diagnosed with cancer, then what?” 

‘Asking to Be Vaccinated’

Partnerships between academia and community-based health organizations, such as the one the NCI grant is now facilitating, are working to not only respond to that “then what?” but also at precluding the need for the inquiry.

The objectives of this multilevel initiative, Kennedy-Rea said, are to increase cervical cancer screening rates in at-risk communities, elevate HPV vaccination rates and decrease the rate of smoking.

“We’ve seen the ability of clinics to increase their screening numbers and the very positive outcomes from that,” she said. “And they’re able to sustain it.” 

The theory behind implementation science is that you reinforce systems that are already in place, helping them maintain sustainability of the desired interventions. 

Kennedy-Rea said that her office, Cancer Prevention and Control, has traditionally focused primarily on an individual’s behavior. They’re now moving more toward multi-level initiatives, whereby, while continuing to help that individual overcome barriers, they’re taking this systems approach.

“If I send a staff member to southern West Virginia to work for a day and identify people in need of screening, and navigate these folks to screening, we may successfully get 20 to 30 people into screening,” Kennedy-Rea said. 

“If we spend the same amount of time working with a health system, identifying patients within their system who are in need of screening and help them build interventions into their workflow, over the same amount of time we may be able to identify 6,000 people and impact the ability of that clinic to screen those 6,000 people.”

Among the initiatives funded in Appalachia through the grant will be helping parents understand the importance of the HPV vaccine. Kennedy-Rea believes that when the vaccine was introduced, it was understood as a means of reducing sexually transmitted diseases but not as a cancer-prevention measure.

“And I think in Appalachia, that may have hurt the uptake,” she said. “As we help people understand that this is a cancer-prevention vaccine, parents are more willing to have their children vaccinated. I also think that kids are asking to be vaccinated when they have all the information.” 

Long-term Commitment

Winkfield is bullish on such academia/community-based partnerships, most particularly when they’re undertaken in communities where there are only a half dozen or so primary care providers, as is often the case in rural Appalachia.

“If we can provide the support,” she said, “help lift those providers and provide them the resources they need so that it’s not an extra burden for them to do these things – that’s where those partnerships are really, truly invaluable.”

But, she cautions, “It’s a process; it takes a while.” The medical community, Winkfield avowed, is starting to better appreciate the importance of “taking time to understand the culture of the community and understand where people are so that we can meet them where they are.”

This is especially true, she said, in Appalachian communities that are “really tight knit. There’s a trust factor; people have to know that you’re there to stay, that you’re not going anywhere … You can’t pop in and out; you can’t do that type of helicopter research and expect to make a big difference.”

She points to the University of Kentucky and other universities throughout Appalachia as exemplars of long-term commitment. 

Kennedy-Rae and her colleagues anticipate arriving in the communities in the fall, conducting focus groups, gathering baseline data and laying foundations, with implementation launching next spring.