Study: Lifestyle, resources part of why WV cancer outcomes lag behind U.S. rates

To combat her aggressive cancer, Carter underwent 24 weeks of chemotherapy, then surgery, and six weeks of radiation sessions. While she received excellent in-state treatment, she faced challenges, including a three-month wait at a local cancer treatment center before finding an earlier appointment at Charleston Area Medical Center.

"Three months to get an appointment for something that's been identified as aggressive ... I mean, it was just crazy," she said. "I just imagine a lot of people go through that. They discover something's wrong, and then you just have to wait."

As a single mother of two, Carter also struggled with financial assistance.

"What I have discovered is that West Virginia is one of the few states that there's just no infrastructure via nonprofit, via the government, to help you. If you look at Ohio, Kentucky or Virginia — there are multiple nonprofits set up to help in some manner. There's all sorts of things that you can take advantage of, and there simply wasn't in West Virginia at all," she said. 

During treatment, Carter’s energy bills skyrocketed, in part because she needed an air conditioning unit to combat a treatment side effect. When she looked for financial relief from Appalachian Power, she found they provided assistance programs for Ohio and Virginia but none for West Virginia. 

Though she managed as a full-time attorney with a flexible work schedule, she recognized that others were not as fortunate. 

"That was a real shock, not having any support groups or any groups that could help you a little bit financially," she said. "And I have wonderful insurance, and I had a wonderful community come forward and help me. My employer in particular was the key to that, because they allowed me to continue working through chemo."

Carter also acknowledged factors like travel were easy due to living near two cancer centers in Charleston. She recalled many of her fellow patients traveled over an hour for care. 

"I just thought, 'Oh my gosh, how miserable that must be,'" she said. "Because ... you always have to find someone to help you, and that's hard. That's someone taking an entire day off of work. And then, if you didn't feel good, you'd have that long journey back."

Dr. Carl Schmidt, chief for the Division of Surgical Oncology at West Virginia University's School of Medicine and state chairman for the Commission on Cancer, explained there are many people in the Mountain State who encounter hardships like Carter described and that some of those people will not seek care because of the obstacles to it.

"We know early detection for many cancers could be the difference between cured and not cured, but if you think about the people in our state, it's not like they choose to neglect health care purposely. People in our state have competing priorities in their life. They have limited resources," he said. "There's many people in West Virginia who postpone their own health care because of the needs of their family. People in our state might not get paid time off right away to come see the doctor for a symptom."

While Carter saw differences in cancer resources from state to state, Schmidt confirmed he'd seen geographical contrasts in practice as well.

Schmidt compared his experiences treating patients in Columbus, Ohio, to those in West Virginia.

"I would say here in West Virginia, those things are much more acute for me than they were working in that larger city," he said. "We have folks who struggle even with just the transportation to come and see us, who ... may be uncertain about their drinking water, uncertain about the safety of their home."

Additional factors such as obesity, smoking and low HPV vaccination rates contribute to the region’s struggles with cancer, he noted. He also acknowledged that environmental factors like genetics and chemical exposure could contribute to cancer rates, though proving their impact on the region is difficult.

"In my own personal experience, I have had plenty of patients who have preventable risk factors like smoking and other drug use," he explained. "So, I've taken care of plenty of people whose cancers may have been preventable."

Carter also pointed out the lack of clinical trials in West Virginia, forcing patients to leave the state for cutting-edge treatments.

"If your health care team isn't bringing these things to you, especially in Appalachia, where not all of us even have internet, then you wouldn't know about them, and your outcomes can be worse," she said.

New data

Carter's experience is spot on.

A recent study from the University of Kentucky shows that while cancer rates in Appalachia are improving, progress is slower compared to the rest of the nation.

Published in the Journal of the American College of Surgeons, the study provides a county-by-county analysis of up-to-date cancer data, a level of detail the authors say previous research lacked. It is one of the few cancer studies focused solely on Appalachian cancer rates and the first since 2016. The last study was based on data that is now more than a decade old.

Using data from the U.S. Census Bureau, the U.S. Cancer Statistics Incidence Analytics Database and the National Center for Health Statistics, researchers examined cancer incidence and death rates from 2017 to 2021 and overall trends from 2004 to 2021. Key findings include:

• Higher cancer risk in Appalachia: From 2017 to 2021, people in Appalachia were 5.6% more likely to be diagnosed with cancer and 12.8% more likely to die from it than those outside the region.
• More deaths from screenable cancers: Despite better screening rates, more people in Appalachia die from breast, colorectal, cervical and lung cancers than in other U.S. regions.
• Differences within Appalachia: The Central subregion — eastern Kentucky, parts of Virginia, Tennessee and West Virginia — had the highest cancer rates, highlighting the need for targeted research and outreach.
• Rising liver and late-stage cervical cancers: From 2004 to 2021, liver cancer cases rose by 3.77% per year — nearly twice the rate elsewhere — linked to hepatitis C and IV drug use. Late-stage cervical cancer also increased by 0.51% annually while remaining stable in the rest of the U.S.
• Slow progress: Cancer incidence and death rates are declining in Appalachia but not as quickly as in other U.S. regions.

W.Va. outcomes divided: 'Like two different states'

The Appalachian region spans 423 counties across 13 states and is home to more than 26 million people. The study categorizes the region into five subregions to analyze cancer trends.

Todd Burus, a data scientist at the Markey Cancer Center of the University of Kentucky and first author of the JACS study, emphasized that each region is unique, requiring a detailed view to improve cancer outcomes.

"The experiences of people living in different regions of Appalachia, particularly in the coal mining areas of eastern Kentucky or West Virginia, are vastly different than those of individuals in other places ... Not all rural people have the same experience, and not all Appalachian people have the same experience," he said.

Cancer rates and risk factors vary by subregion. Differences in racial composition, poverty rates and health care access all contribute to Appalachia’s diverse health landscape. West Virginia’s subregions are among the most rural, with high poverty and poor educational outcomes; however, residents are more likely to have insurance than those in two of the other five subregions.

There are two subregions identified in West Virginia: the Central and North Central subregions.

Schmidt said he understood why the authors split the state in their data. The southern half of West Virginia often has worse outcomes, from higher incidences of vascular disease to worse access to safe food and roads.

"The central region includes ... some of the poorest counties in our state. There is a difference on the average between the resources that people have from the southern counties to some of the counties up this way. I don't want to over generalize and say something crazy, like everybody in northern West Virginia is wealthy and everybody in southern West Virginia is poor. But we have ... heat maps that show that problems are worse in the southern part of the state," he said. "On average, it's like two different states."

Burus said he hopes nuanced, in-depth data will help guide targeted policy decisions, direct resources effectively, and prevent overly broad approaches to health care challenges.

Lifelines of support

Schmidt mentioned two specific WVU initiatives that help rural patients who can't get to the city for cancer screenings: Bonnie's Bus, a mobile mammogram service that provides breast cancer screening, and LUCAS, a mobile low-dose CT scan for lung cancer screening. 

Both roll through rural areas periodically to get patients within their screening guidelines to treatment sooner and provide information about cancer screenings and genetic counseling for families.

In addition, WVU Cancer Institute has opened cancer centers across the state. So far this year, WVU Cancer Institutes at Thomas Memorial Hospital in Charleston and Boone Memorial Health in Madison commemorated completion with ribbon cuttings. There are now 16 facilities partnered with the WVU Cancer Institute.

Charleston is also home to the CAMC Cancer Center. According to their website, CAMC treats more patients with cancer than any other hospital in Southern West Virginia. CAMC’s cancer program has also been accredited by the American College of Surgeons Commission on Cancer since 1947, an honor only earned by one-third of cancer centers nationwide.

Appalachian Power now has a medical certification program that allows West Virginia customers to provide written certification from a currently licensed physician, nurse practitioner or physician assistant that termination of service would be dangerous to the customer or a permanent member of the customer's household for medical reasons.

However, it emphasizes that participating in the program does not relieve customers from paying their electric bill and does not prevent them from turning the power off. It does not contain this disclaimer for customers who can use the same program in Virginia.

Carter, who has a 40% chance of cancer recurrence, sought to fill a gap in support by creating the Radiant Resilience Collective, a collaborative atmosphere that allows female cancer patients to share their experiences.

Carter noted that West Virginia lacks consistent cancer support groups. Her program at the Charleston Family YMCA, she believes, is the first weekly support group of its kind in the Kanawha Valley — possibly the state. However, she believes adequate support and collaboration will improve health care outcomes for the women who come to her group.

"I'm so excited for this," Carter said. "Just to allow them to find the strength and the value that's in a room with others who have gone through something similar. Being in a silo is what prevents us from knowing what's out there."