Patients in Appalachia Face Unique Disparities, Obstacles to Care
Organizations such as the Appalachian Community Cancer Alliance are working to leverage technology and improve barriers to care.
In nearly all areas of health care, patients in Appalachia face heightened challenges and health disparities, according to a report from the Appalachian Regional Commission (ARC).
Such challenges include transportation, financial barriers, and health literacy—all play a role in contributing to their experience of health disparities, which include an increase in mortality rates from heart disease, cancer, chronic obstructive pulmonary disease, HIV, stroke, and diabetes. Taken together, data from these disease states show that the rate for years of potential life lost is 25% higher in the Appalachian Region than in the United States as a whole.1
“We just happen to be in a series of states that geographically represent underserved communities. There are a lot of built-in barriers,” said Richard Ingram, MD, a medical oncologist at Shenandoah Oncology in Winchester, Virginia, and chair of the Appalachian Community Cancer Alliance (ACCA), in an interview with Pharmacy Times.
The Association of Community Cancer Centers (ACCC) is currently working to launch the ACCA in an effort to improve cancer screening, care, and mortality rates for the Appalachian region. The 250,000 square miles of Appalachia encompasses all of West Virginia and parts of Alabama, Georgia, Kentucky, Maryland, Mississippi, New York, North Carolina, Ohio, Pennsylvania, South Carolina, Tennessee, and Virginia, according to the ACCC. This includes both rural and urban areas, with 25.7 million residents.2
Systemic poverty and lack of resources have led to significantly elevated morbidity and mortality rates in the region compared to other areas of the country. These rates are even more severe in rural areas of the region. For example, central Appalachia has the highest cancer rate in the region at 32% higher than the national rate. In the Appalachian regions in Kentucky, the cancer mortality rate of 227 cases per 100,000 exceeds the national average by 35%, according to the ACCC.2
“I think when you have a rural population situation, health care can look somewhat difficult to access when it comes to distance and transportation barriers,” Ingram explained.
These issues are complex but can include a reliance on personal transportation rather than public transportation, a limited number of health care providers, and large distances between providers. There are also significant obstacles to obtaining preventive care as opposed to reactive care, Ingram explained, particularly for patients who have to juggle work, childcare, and care for other family members.
Furthermore, as national care for conditions such as heart disease have improved, declining national disease rates have masked only minimal improvements in rural Appalachia. For instance, heart disease mortality declined by 40% nationwide between 1999 and 2009, but the heart disease mortality rate in Appalachia remains 17% higher than the national rate, according to the ARC report.
Risk factors for heart disease include smoking, obesity, diabetes, excessive alcohol use, and physical inactivity, all of which are common in rural Appalachian regions. Rural areas of Appalachia also face higher heart disease mortality rates than urban areas. The report found that rural counties in Appalachia have a heart disease mortality rate of 234 per 100,000 individuals, which is 27% higher than the rate of 184 per 100,000 in the region’s large metro counties, and 34% higher than the national rate.
These findings are similar when examining cancer mortality. According to the report, the Appalachian region’s cancer mortality rate is 10% higher than the national rate, with rates higher than the national average in 85 of the region’s 420 counties.
Furthermore, the national cancer mortality rate is 168 per 100,000 individuals and has been declining since 1991, when the rate was 215 per 100,000. However, the Appalachian region still has a cancer mortality rate of 184 per 100,000. Additionally, central Appalachia has the highest rate at 222 per 100,000, which is 32% higher than the national rate.
These heightened disease mortality rates are often compounded both by lifestyle-based risk factors and obstacles to care. Ingram noted that access to counseling around healthy choices, specifically with regard to smoking cessation, is limited, as is access to physicians and specialists once a diagnosis is made.
“We know rates of tobacco use are higher in Appalachia than they are in, say, similar regions in the southeast and the rest of the country,” Ingram said. “We know obesity, sedentary lifestyle, food insecurity, low socioeconomic status, and tobacco use—all of those factors lead to worse outcomes than people who don’t have those.”
Many patients in Appalachia also do not have access to regular primary care physicians or even a pharmacy, and it can take time and resources to access these care providers. Furthermore, there are fewer providers per patient in the region, giving health care providers even less time per patient.
When discussing cancer care specifically, Ingram said the multidisciplinary nature of cancer care can be a challenge. Although this often means that multiple specialists are located together, which can be convenient, this also results in fewer comprehensive cancer centers with much further distances between them.
“In rural communities, it’s very difficult because it’s tough to replicate a multidisciplinary clinic multiple times,” Ingram said. “It would be hard to have all the specialists in one building but then take those specialists and send them to 3 different buildings.”
Navigating adverse effects and medication management can also be challenging when patients live far away from a cancer center, Ingram explained. Further, emergency departments in small, rural towns are often unequipped to help with complex cancer care. Due to these challenges, there have been an increase in partnerships with local providers.
“We’ve had to partner a lot with our local communities and [emergency departments] and develop great relationships in that regard with oncology in general,” Ingram said. “But it’s still difficult.”
Organizations and providers in the region have also worked to create unique programs to try and overcome these challenges. Ingram said these programs can include partnerships with social workers, transportation services, psychosocial counselors, and providing resources such as gas cards and vouchers. Even with this assistance, however, cost barriers can impact many patients in the region.
“For some people who live right on the margin of survivability, missing work around treatments can have a huge financial toxicity for them,” Ingram said.
These issues might be even more challenging for communities of color in Appalachia, although Ingram said there is mostly anecdotal data at this point. Some data from other areas of the country have found different populations that have different access to care, and patients of color sometimes have poorer access to preventive services, such as cancer screenings. Additionally, language barriers can be a challenge for LatinX patients as well.
Despite these obstacles, Ingram said there are a myriad of interventions and agencies working in Appalachia to address the challenges populations in the region face. As a coalition of state societies in the region, the ACCA is working to leverage technology and other tools to bring screening initiatives into rural Appalachian communities to help populations overcome some of the hurdles to care.
Pharmacists can also work on partnering with primary care providers and groups in order to raise awareness of which patients should be screened and how to counsel them appropriately. Particularly in the realm of tobacco and smoking cessation, Ingram said pharmacists have a great opportunity to counsel patients and refer them to helpful screening or counseling services.
“Pharmacists are wonderful advocates for patients, so I think a pharmacist’s role could be huge in education and counseling,” Ingram said. “I think that’s an untapped resource.”
- Health Disparities in Appalachia: Mortality. Appalachian Regional Commission. 2021. Accessed July 12, 2022. https://www.arc.gov/wp-content/uploads/2021/02/Health_Disparities_in_Appalachia_Mortality_Domain.pdf
- ACCC Launches Efforts to Address Screening, Cancer Care Challenges in Appalachia. News release. ACCC; May 10, 2022. Accessed July 12, 2022.