Patients with cancer, even in the most “favorable” of circumstances, often face hurdles to care. But among disparate populations in poverty, where individuals are struggling to stay afloat on a day-to-day basis, a cancer diagnosis can add prohibitive barriers to an already overwhelming fight for survival.
At the AONN+ 9th Annual Navigation & Survivorship Conference, Daniel Lenard and Jason Coker, PhD, discussed the concentrated healthcare barriers their patients face in rural Mississippi, a microcosm of health disparity in rural America.
The state of Mississippi has a population of about 2.9 million, of which 1.6 million are living in an area classified as rural. Many of these communities are also designated as medically underserved—areas with too few primary care providers, high infant mortality rates, high poverty, and a high elderly population. Individuals living in these areas are often also uninsured or underinsured.
“Mississippi is at the bottom of all of the good lists and the top of all of the bad lists,” said Mr Lenard, Director of Oncology at Baptist Memorial Hospital-North Mississippi. “We’re among the states with the highest poverty, obesity, and high school dropout rates, and the lowest college education population. We also have some of the worst access to quality healthcare.”
What Does Disparity Look Like?
Cancer disparities affect all population groups in the United States, but certain groups have been found to have a higher rate of cancer cases, deaths, and complications, often in areas with concentrated ethnic populations and/or low socioeconomic status. Risk factors associated with disparities include genetic and hereditary factors, healthcare access, socioeconomic factors, lifestyle behaviors, diet, and physical activity.
“Disparities are commonly identified when cancer rates are improving overall, but the improvements are delayed within a certain group or population,” he noted.
For example, African American women are twice as likely to be diagnosed with triple-negative breast cancer, and African American men are twice as likely to be diagnosed with prostate cancer when compared with other groups. American Indians and Alaskan Natives have the highest rates of death caused by kidney cancer. Asian and Pacific Islanders have the highest incidence rates of liver cancer, and women who live in rural areas are twice as likely to be diagnosed with, and die of, cervical cancer versus individuals living in urban areas.
The Common Barriers to Care
According to Mr Lenard, 60% of the people who travel to his cancer program are consistently traveling over 30 minutes one way, of which 27% travel over 45 minutes (if they’re treated at all). Additionally, the majority of patients in the program use the emergency department as their primary care source.
To find out why, he and his colleagues conducted a review of community health needs and identified a number of barriers to care, 4 of which they defined as underappreciated: limited access to healthcare, unreliable healthcare over the course of a lifetime, unaffordable transportation, and cultural translation of care.
To properly address these barriers, they focused their mission on providing free or reduced-cost screenings and services, especially targeting low-income, at-risk, and minority populations, and increasing residents’ awareness of the benefits of cancer prevention, screenings, and early treatment. They partner with radiology groups to offer mammograms and other diagnostic services at a reduced rate, and they continue to collaborate with a broad range of nonprofits and local community organizations to support initiatives that improve access to cancer screening.
In addition to expanding access to services, improving care in rural areas often means mobilizing a community. He cited 2 patients for whom reliable transportation meant the difference between receiving care and going without. One patient with prostate cancer lived more than 60 miles from the nearest radiation provider and did not have a source of transportation. So, his navigator and social worker reached out to community resources for help. Congregants from a local church volunteered their time to drive the patient to and from his appointments, and Baptist Cancer Center provided gas cards out of their own resources to offset some of the cost to the volunteers. Another patient had late-stage head and neck cancer and lived with his wife in an isolated area with no social support network. He was unable to make it to his appointments because of a recurrent flat tire until his navigator and social worker intervened.
“My social worker told me it wasn’t the cost of care keeping him from starting treatment. It was a $60 tire,” said Mr Lenard. “That was the difference between appropriate care and death for this patient.”
Growing Up Poor
Growing up in rural Mississippi, poverty was a way of life for Dr Coker, Field Coordinator at the Cooperative Baptist Fellowship of Mississippi and National Director of Together for Hope, a rural development coalition.
His grandmother, “Cutie” Sellers, never attended school but went straight into the cotton fields, where her father challenged her to pick 300 pounds of cotton every day. She was illiterate, married by age 16, and gave birth to 5 children, nearly dying during childbirth with her youngest child, Mary.
Mary grew up in the cotton fields, too, but she actually got to go to school. She graduated high school, a major achievement in her family, and married when she was 18. She worked in factories most of her life and had 2 children. Mary is Dr Coker’s mother. Dr Coker’s grandfather, “Fat,” died of lung cancer because of inadequate access to care.
“So, poverty is not an academic exercise for me. Poverty defined my life all through college, and it continues to define my life in ways right now,” he said. “This puts me in a good position to bridge the gaps between those who live in poverty…and those who do not. Specifically, the middle class who oftentimes try to provide services for those experiencing poverty.”
The Priorities of Hope
Together for Hope follows a philosophy of asset-based community development. “We see people in these areas not as the problem but as the answers to the problem,” he said. “They’re the ones who are experts in their area, and we want to work with them in order to make sure their dreams for their community come to fruition.”
To that end, they have 4 “priorities of hope”: education, health and nutrition, housing and environment, and social enterprise. These priorities represent a holistic approach to alleviating poverty in rural America, he said.
They focus on regions of persistent rural poverty in the United States as defined by the US Department of Agriculture: The Delta, Cotton Belt, Appalachia, Native Lands, and the Rio Grande Valley, comprising 301 counties. These areas are defined as having 20% or more of the population living below the federal poverty line since the 1980 census. “Rural poverty in America is not specific to any ethnicity or race, or to any single geographic area,” he said. “It looks different in different places and for different reasons. But what they have in common is economic impoverishment—an impoverishment that they didn’t create.”
What they found in these areas of rural poverty was that these populations have been reduced to basic survival: the need for potable water, healthy food, and shelter. The infrastructures in these counties have failed, and clean water is a major issue. Many of the towns are food deserts, where the closest access to a fresh vegetable is more than 15 miles away. Numerous communities are also in a housing crisis; the houses that still stand pose dangerous health risks relating to mold, mildew, and backed up sewage.
“When you live in survival mode, it changes the way you understand the world,” he said. “And this is important when it comes to engaging the medical community related to services, specifically the delivery of services to those who are experiencing poverty.”
According to Dr Coker, what happens in this scenario across rural America is that a trained professional class attempts to engage another group of people who have a completely different worldview: one which is deeply embedded in their culture.
“Some sociologists call this ‘generational poverty,’ but I’d actually call this the ‘culture of class’ in America,” he said. “One culture is trying to survive from day to day, and the other culture is trying to help that culture think beyond the day to day. Those are 2 wildly different world views.”
In 2016, the National Association of Counties released its Report on Poverty in Rural Counties. The number 1 indicator of poverty was geographic or economic isolation (ie, rural). The second greatest factor was hopelessness, followed by hunger, homelessness, and unemployment. Education barely made the list. “So where are the free mammograms and prostate screenings?” he asked. “Access to adequate medical care isn’t a high priority to those who are trying to survive. And it’s not a high priority until tragedy strikes.”
Designing programs that are culturally appropriate for a disparate group—and moving through these sociocultural barriers to deliver medical resources—may be as simple as providing gas cards or tires, but it may take more work than that, he said.
The Importance of Trust
Healthcare professionals must be aware of the cultural barriers between people living in poverty and the middle class. Therefore, trust is imperative when trying to break down the walls between the “cultures of class” in America.
Successful organizations on the ground speak the language of the people. Speaking the same language regarding resources and access to resources prevents frustrations within healthcare professionals’ network and creates trust among clients in persistent rural poverty. There is no cultural translation between the organization and the people, he noted. The organization is not removed from their constituents’ lives and communities, but rather, is an integral part of them.
According to Dr Coker, making a real difference in populations that live in poverty comes down to care and presence. “Do you actually care? These communities can tell. Do you care enough to be there and to be there long-term?” he asked. “If the answer to any of those questions is ‘No,’ those who live in persistent rural poverty will never trust you enough to come to your screenings. And they may not even come to your services at all—services that could save their lives.”
“In a fight for survival,” he added, “people must know that you are there to fight with them.”