Uncovering the hidden drivers of rural health care disparities

Abstract

Patients living in rural communities who have chronic diseases, including cancer, have inferior survival compared to those living in urban areas. In this issue, Unger et al. provide an excellent overview of factors that challenge rural patients while highlighting how clinical trial availability can improve rural outcomes.¹ They discuss delayed diagnosis, underinsurance, provider shortages, the higher incidence of comorbid illness and poverty, and other factors. All of these are commonly recognized factors that contribute to inferior outcomes for patients with cancer in rural communities. However, there are less well known challenges facing both patients and providers in rural areas that may result in persistent and poorer outcomes, even when more well known factors may be overcome. These factors are important not only because they contribute to cancer care decisions and outcomes but because they also compound the reluctance of patients living in rural areas to participate in clinical trials.

Rural practices exist in densely populated states like New York, Washington, and Pennsylvania and in large, underpopulated states like Wyoming, Alaska, and the Dakotas. Patients from these latter locations face chronic provider shortages as well as the challenge of long drives for routine care. Both of these result in patients tending to ignore early signs and symptoms that may appear minor but contribute to delayed diagnosis.¹ What is under-recognized is the lack of public transportation in these rural states to help patients get to and from chemotherapy appointments, whether in outlying communities or in rural towns. Finding rides for treatment, especially because of post-treatment malaise, fatigue, or nausea (which can make driving home unsafe), is a challenge that leads many to abandon cancer care. The long drives often required in rural areas go beyond a barrier for patient access. There exists an increased risk of road closure because of wind, snow, poor visibility, or accidents, leading to more frequently interrupted care. Closed roads affect the ability of courier and mail services to deliver necessary chemotherapy drugs to patients or even to the hospital. The lack of neighboring hospitals means one cannot tap another facility for a loan (a cup of chemo, as it were) to tide a patient over. This also results in delayed and often repeated cycles of interrupted chemotherapy. The effect on clinical trials is felt in the delayed delivery of trial drugs, delayed visits for time-sensitive clinical trial toxicity assessments, and even on-study required blood draws.

Local free housing close to treatment areas is offered in some rural sites, but this housing may not allow relatives or pets and results in a sense of isolation of patients from their sources of emotional support. Thus, even when available, free local housing is underused.

Although a hub-and-spoke model of decentralized care may work in a state like Pennsylvania or Washington, states like Wyoming simply do not have enough local providers to be the boots on the ground for a provider who is asked to function remotely, whether for routine care or as a clinical trialist. Telehealth is a step in the right direction for many rural practices, but telehealth reimbursement remains at risk after the coronavirus disease 2019 (COVID-19) pandemic and may not be available at all later in 2025 based on moves from the US federal government.² Furthermore, many patients may not own a computer or smart phone, making videoconferencing impossible. Finally, internet and broadband coverage is poor in many large underpopulated states. When broadband or phone service malfunctions (a not uncommon occurrence that I have personally experienced), it becomes an unfixable barrier to telehealth services. Because clinical trial visits are often time-sensitive, an inability to have a televisit as scheduled according to protocol will disqualify enrolled participants.

There are also other issues that affect quality of care. All patients and providers in the United States are subject to the vagaries of prior authorization; however, rural patients also deal with scarcity of resources that may be needed to cover co-pays or if authorization is denied. In addition, it is not uncommon for rural communities to rely on a sole oncology provider, effectively limiting the option for any one patient to transfer care. If biopsies are required—whether for standard treatment or as required by a trial—there may be no interventional radiologist available, prompting patients to travel even farther. The ready availability of imaging is not a national standard; indeed, rural practices often rely on mobile positron emission tomography imaging that is not available on a daily basis (often it comes at 2-week intervals, for example), is subject to breakdowns, and is at the mercy of the weather. Dedicated breast magnetic resonance imaging is not available to my community, a striking deficiency in the current era of breast cancer management when neoadjuvant treatment is playing a more prominent role and pretreatment imaging of disease is essential. These factors make it difficult for rural physicians to practice guideline-concordant care and, ultimately, can affect prognosis. All of these provide challenges to the hub-and-spoke model of clinical trial implementation or care.

Cancer treatments can affect blood cell production, causing decreases in red and white blood cell and platelet counts, which may necessitate transfusion of blood products. Many rural hospitals have only packed red blood cells on hand; blood products like platelets or irradiated red blood cells are simply not available in an emergency and must be ordered in advance and shipped from a state blood center to the local hospital. In bad weather, statewide resources are often required; however, when roads are closed, neither blood products nor patients can be transported. Patients can die from lack of access to these blood products on and off trials. This is yet another under-recognized aspect of rural cancer care.

Unger et al. mention the lack of insurance and underinsurance of many rural patients. Hospital emergency rooms are legally mandated to provide urgent care, but diseases like cancer require chronic, ongoing care. Many rural states did not expand Medicaid; consequently, uninsured patients cannot pay for chronic cancer care and often opt to forgo therapy. Those who want treatment may be turned away for lack of insurance, especially if they are not long-time residents of the community. Finally, the financially challenged rural hospitals that do offer charity care to uninsured and underinsured patients may face closure because of the impact of repeatedly caring for the uninsured. In many rural communities, the local hospital is the only source for health care. Closure of rural hospitals translates into inferior or no care for all conditions for rural patients.³

Lest anyone think these are but theoretical concerns, in the past year, three neighboring rural community hospitals have closed their obstetric units, leaving one hospital as the only obstetrics provider in a ≥300-mile radius. When one hospital is delivering all the babies in a state that has difficulty recruiting obstetricians, delays in routine gynecologic care for communities is the outcome. As I write this, I learned of the impending closure of a hospital 110 miles away, leaving that community without any form of health care. Hospitals struggling to stay open do not have the infrastructure, staff, or bandwidth to channel effort into opening or running clinical trials.

The authors cite the widespread poverty in rural locations. An unspoken truth is also that the scarcity of resources leads to less competition and higher, often unaffordable prices for staging and diagnostic studies. Although rural practices may have financial navigators to help with the cost of drugs, these navigators have no control over the cost of diagnostic tests. And, of course, people with day-labor jobs and tight budgets cannot afford the cost or time off from work to regularly drive for diagnostic or surveillance imaging, let alone to complete trial mandated visits. In a setting in which many are uninsured/underinsured and have relatively low salaries, costly diagnostic testing will translate into a decision to forgo care.

Finally, the lower health literacy of rural communities referred to by Unger and colleagues is real. Acceptance of treatment, like agreeing to participate in clinical trials, requires health literacy and trust in the health care system. The COVID-19 pandemic exposed a predisposition to conspiracy theories and a suspicion of the medical establishment in some states.⁴ This manifested as lower masking and vaccination and higher COVID-19 deaths in certain rural states. This suspicion of the medical establishment has increased over the past 5 years and has led to covert ingestion of ivermectin and fenbendazole instead of (or in addition to) chemotherapy and to the belief that clinical trials are experiments.^{4, 5} Distrust is much harder to overcome than simple ignorance, is contagious, and will undermine our clinical trial system if unchecked.

It is important to be aware of these lesser known challenges faced by rural patients in getting care because not only do they affect general medical care and outcomes, they also will affect a patient's ability to participate in clinical trials even if they are available. And, although some of these obstacles may be fixable, others like weather are not and will frustrate researchers who do not account for them and see no improvement in rural participation in trials.