In Appalachia, cancer rates are stubbornly high. One woman’s quest to find out why

OMEROY, Ohio — In the poorest communities spanning Appalachia, cancer is often a death sentence.

There are virtually no hospitals nearby. Few periodic cancer screenings. Public health outreach is sporadic at best.

Last month, cancer epidemiologist Electra Paskett rode through this southeastern Ohio town in a borrowed Dodge minivan determined to do something about that.

“This isn’t fair for people,” she said, pausing alongside a ramshackle home with peeling paint, cracked windows, and an empty pizza box on the front porch. “The last thing on their minds is health care because they’re trying to make ends meet.”

Paskett, a 59-year-old New York transplant, has spent considerable time here and in other towns across the region, trying to figure out why cancer rates have remained so stubbornly high. Even as the death rate from cancer has steadily declined for years across much of the country, the mortality rate in Appalachia is down only slightly from what it was in 1968 — and in some counties the rate has increased.

For half of her roughly 30-year career, Paskett has waged a multifront battle here against the disease through her own research, examining the impact of community gardens, mammogram vans, patient navigators, and other factors in helping to reduce the rates of cancer. From her base at the James Cancer Center at Ohio State University, she has also worked with local anticancer groups and launched public health initiatives.

In short, she is trying to end the cycle of resignation and hopelessness.

“Electra is truly unique in the connections she’s set up in a population that’s probably the most challenging to reach because of the social barriers,” said Lorelei Mucci, head of the cancer epidemiology track at the Harvard T.H. Chan School of Public Health. “That’s something that’s really phenomenal.”

To penetrate a notoriously insular culture, Paskett has relied on what she calls the “give-get matrix.”

The give: Paskett works with local organizations to launch initiatives — setting up community gardens in areas that lack fresh produce, for instance, or spreading awareness about breast cancer screenings. She also helps them build their organizations into tax-exempt nonprofits and raise money.

The get: If these initiatives show promise, Paskett and her research team can design and test larger-scale trials and publish results. The goal is to help figure out why the cancer rates here are so stubbornly high, and drive them down.

Paskett said it’s hard to quantify the impact of her work in the region, given the dearth of current data around community health. But she said her initiatives to boost cervical and colon screening have spared people from advanced cancer diagnoses, and her human papillomavirus vaccine initiatives have also protected younger people from oral and cervical cancers.

“Little wins,” she said.

In this region, however, little wins count for a lot.

Children play in the field and rubble behind homes in Pomeroy, Ohio. Photo by Stephanie Strasburg/STAT

The question is, why has Appalachia fallen behind?

In Kentucky, Ohio, Pennsylvania, Virginia, and West Virginia, the incidence of lung, cervical, and colorectal cancer is higher in Appalachian areas than elsewhere in the states. Mortality rates are higher, too.

According to the Appalachian Community Cancer Network, a project funded by the National Cancer Institute, the mortality rate for cervical cancer in Appalachian areas of Kentucky is 26 percent higher than in non-Appalachian areas. For public health experts, the disparities are staggering.

“What’s the key driver?” asked Nancy Lane, who studies health trends in the region for PDA, a health care consultancy in North Carolina. “Is it access to health professionals? Travel hurdles? Cellphone access? The air? The water? Something good or bad in the diet? You have so many things to filter.”

Smoking rates are high, too, and Paskett said many younger women who can’t find work will stay in their homes for fear of crime, which has spiked along with opioid use in the region. They often turn to drugs, binge drinking, or risky sexual behavior to cope with the boredom and isolation.

Among many people, there’s also a different attitude toward medicine.

“It gets down to ‘If it isn’t broke, why fix something?’” said Deanna L. Tribe, who authored a book about Vinton County — one of the most economically distressed areas of in the region — and was a community development specialist with the Ohio State University extension service.

Such behavior is a hallmark of the community’s traditional self-reliance, she said, adding that many people here have also, by necessity, developed high thresholds for hardship and pain — and are proud of it.

“Money also comes into account. The time comes into account. The insurance — all of those kinds of things,” Tribe said. “They may know something’s not quite right, so we end up with a lot of people getting advance diagnoses, which might have been stage 1 cancer if they’d gone earlier.”

Paskett’s response has been to identify public health flaws and prove that residents will, under the right conditions, change their behaviors to overcome those hurdles.

One of her studies, for instance, demonstrated the effectiveness of using local churches to promote healthy eating and exercise. Another focused on outreach to parents and clinicians to improve rates of HPV vaccinations among adolescent girls in Appalachian Ohio.

But to complete more ambitious studies, Paskett and others will need to overcome a nagging obstacle: ignorance.

“Everybody says ‘Where’s the disparities here? Everybody is white,’” she said.

Those who fund research, she said, often “don’t really think of the populations we work with as underserved, and they are.”

Meigs County Health Department administrator Courtney Midkiff, in magenta, hugs Dr. Electra Paskett as the doctor arrives with her team for a meeting to discuss the Meigs County Cancer Initiative on Tuesday, May 3, 2016 at the health department in Pomeroy, Ohio.

On a recent day in Ohio’s Meigs County, near the West Virginia border, Paskett decided to pay a visit to the local health department for updates from a local anticancer coalition. Her listening technique might best be summed up in three words: Tell me more.

“We know there are still some women who aren’t getting mammograms, so the question is how to reach them — the ones who don’t come to the health department,” she said, sitting at the head of a table in a windowless room filled with the noise of standing fans.

She looked to others at the table, spread her fingers wide. “The answers are here. You guys know the answers. Do you have any ideas for how to reach these people?”

Lenora Leifheit, a local nurse with a gold crucifix necklace, rocked in her seat. “A lot of them feel, ‘How am I going to pay for it?’”

Paskett: “Yes.”

Leifheit: “If they find something wrong …”

Paskett: “Yes.”

Leifheit: “So why find out …”

Paskett: “Right. Yes.”

Leifheit: “If I can’t do anything about it.”

Paskett: “Yes!”

Leifheit: “And transportation is a big issue. We have no buses or anything like that, and all the treatment centers are outside the county, so you’re looking at 50 miles or more.”

Paskett: “No transportation. And gas is expensive.”

Paskett coaxed more feedback from the group. Education is critical, but sending someone for door-to-door outreach in the community would be inefficient, given how widely dispersed the homes are.

Someone mentioned a subsidized housing development, and Paskett pounced. She told those at the table about a project she once did at a housing development in Winston-Salem, N.C., where her research team hosted monthly cancer screening seminars and parties with food and prizes.

“Then you invite them to health fairs where the mammogram van shows up,” she said. “So that’s one way.”

Leifheit, the only parish nurse in Meigs County, offered to spread the word to churches. Ten minutes later, a rough plan is in place for customizing literature that had been used in Winston-Salem and using it in the local community. A mail campaign. A billboard. Library outreach. The local newspaper.

At the meeting’s end, Paskett smiled warmly at the women, gave them hugs. “Thank you so much. It’s always good to see you all. You do such good work.”

Paskett wears loose-fitting clothes and gestures with her hands in a way that might make her a hazard to waiters in a busy restaurant. She has a keen eye for injustice. At the first wrestling match she ever attended, she stepped onto the mat to complain about a body-slam move performed by a competitor against her son, who, she said, has since forgiven her.

Her formative years were spent in a Queens, New York, apartment that was pressed against the elevated subway line. The daughter of a Greek immigrant father who divorced her mother when Paskett was young, she remembers her mother buying groceries with food stamps and welfare checks. Paskett said she was among the few white girls to play jacks with her African-American classmates during recess.

She lasted a year at New York University before following her newfound Mormon faith to Salt Lake City, where she earned a biology degree at the University of Utah. Five years into an uninspiring drug development career, she learned about epidemiology.

“I said that’s what I want to do! It’s all about figuring out why,” she said. “My grandmother always used to tease me because I’d drive everybody crazy with all my questions.”

After earning a master’s degree in public health at the University of Utah, she landed at the University of Washington, where an adviser suggested that she focus her dissertation on women who fail to get follow-up exams after abnormal Pap smear tests. Paskett, whose mother survived a bout of cervical cancer 15 years earlier, agreed.

The first participant in her first dissertation study was a young African-American mother of twins who Paskett interviewed in Seattle.

Like the others in the study, this woman had simply decided not to even make a follow-up appointment after receiving an abnormal test result.

“She was afraid if she went back they’d find something, and they’d have to operate and remove her womb,” Paskett said. “And she’d stop being a woman to her man.”

“It was the most striking thing,” she said, her voice quieting. “She was afraid she’d stop being a woman to her man.”

When Paskett was offered a faculty position at Wake Forest University in Winston-Salem, she wasted little time in heading again to the city’s housing projects, where death rates from breast and cervical cancer were higher than the national average.

“You’d hear their stories, about, ‘Oh, I have neighbor upstairs with an open, oozing sore on her breast, and it smells.’ And it was because this woman hadn’t gone to get taken care of.”

This was the study Paskett referred to in her meeting with the Meigs County officials.

It was an early proof point for a now-influential approach to cancer epidemiology, known as a multilevel intervention. The idea is to design interventional research that involves not only residents, but also local clinicians and public health officials.

Her team formed a community advisory board to field suggestions on how to address cancer screening and education issues. Over four years, the group implemented the outreach events with food and prizes interspersed with health classes and diabetes screening, church-based seminars, and one-on-one education sessions in women’s homes.

The team also educated local health clinicians on cultural sensitivities around testing, among other things, and on working one-on-one to track and counsel women with abnormal test results.

At the end of the study, the researchers surveyed the participants, as well as a similar population of women in Greensboro, who received no intervention.

The proportion of women in Winston-Salem who regularly received mammograms increased from 31 to 56 percent. (In Greensboro, the proportion increased from 31 to 40 percent.) The proportion of women who received Pap smear screenings increased from 73 to 87 percent in Winston-Salem, while it declined in Greensboro from 67 to 60 percent.

“We didn’t even know we’d made that much of an impact on the women until it was time to leave,” Paskett said. “The ladies were crying because they said nobody else had cared enough to come into the communities where they lived.”

She was preparing to publish her Winston-Salem research when a routine mammography found a malignancy. Paskett relapsed four years later, had extensive surgery, radiation, and chemotherapy, and relapsed again in 2010, and underwent a prophylactic double mastectomy. She’s been cancer-free since.

Her experience prompted new research interests, including studies of lymphedema and cancer survivorship, but last month, in two days of meetings focused on cancer screening and prevention, she mentioned her history once: in a private conversation with a woman who is battling cancer.

She understands, she said, how profoundly different her experience is from those who grow up in Appalachia, despite her own brush with poverty as a child. “I always had that spur behind me to get out of the cycle of poverty we were in, because my parents wanted something better for me,” she said.

“Here, it’s kind of a vicious circle. You stay in the same city, you do the same thing. Unless the parents really want children to get out of that cycle, in any impoverished area, I don’t think they’ll be successful.”

Kate Homonai, left, talks to Darla Fickle, right, about Homonai’s community gardening efforts, while Paskett reads about Appalachia’s history. Homonai is working to promote a seasonal farmer’s market and to reintroduce regional food traditions to improve access to fresh, healthy foods. Photo by Stephanie Strasburg/STAT

Six years ago, Paskett and her team helped secure funding for new cervical biopsy tools and other equipment for a clinic in Gallia County, also in southeastern Ohio.

Patricia Toler, a health department nurse, worked with a cancer coalition to find a doctor willing to donate his time performing biopsies on women who had abnormal Pap test results. And that April, the clinic opened.

One of the first patients was a young woman who lived in the county and who was developmentally disabled. The woman lived alone in a trailer, and Toler suspected no one else would have reminded her to come. She encouraged her to come into the new clinic.

On the first appointment on the first morning of the colposcopy screening, the young woman appeared.

Several years earlier, she had been invited to a party and, while there, been raped by a man who had the HPV virus. She had had a pap test that turned up abnormalities, but she hadn’t had the means to get to a follow-up screening.

The colposcopy showed significant abnormalities, and in the following weeks, the young woman was driven several times to the James Center in Columbus. There, surgeons ultimately removed a lesion that, by now, Toler said, “would be well on its way to being a really bad cervical cancer.”

Sitting across from Toler earlier this month, Paskett listened to her recall the story.

Paskett smiled, and credited Toler for ensuring that the young woman showed up for the screening.

The conversation turned to ways Paskett’s team could improve HPV vaccination rates in the county.

Toler: “If I can get them in my clinic …“

Paskett: “Yes!”

Toler: “Usually I can get their thought process changed.”

Paskett: “Great!”

Toler: “That’s one thing I ask them.”

Paskett: “Right.”

Toler: “Have you had your HPV vaccine? They go ‘Huh?’”

Paskett: “They don’t know about it! Right!”

Toler: “And then I go on.”

Later, back in Columbus, Paskett reflected on what she has been able to accomplish over the years.

Beyond her research victories, she said her most meaningful achievement has been in amplifying the voices of those in the region who might otherwise go unheard. Anything less, Paskett said, would be injustice.

“They’re my people,” she said. “And others know that I fight for them.”

Stephanie Strasburg is a photographer based in Pittsburgh, Pa. This article is reproduced with permission from STAT. It was first published on June 20, 2016. Find the original story here.