The Cost of Cancer Care: How Patients Are Coping and How We Can Help

Jeffrey M. Peppercorn, MD, MPH

Jeffrey M. Peppercorn, MD, MPH

Cancer is frequently a devastating diagnosis for patients and their families because of its implications for morbidity and mortality.

In the U.S. health care system, the challenge of coping with cancer, and the effect of both disease and treatment, can be compounded by the uncertainty of whether patients will have access to appropriate care and who will pay for it. It is clear that the costs of cancer care are going up, driven in large part by innovation and by our ability to do more for patients.

In many settings these costs are being shifted to our patients, with a poorly understood effect on access to care and treatment decisions. There is a clear need to better understand the financial effect of cancer care on our patients and how we as oncologists can best promote informed decision making and access to appropriate care.

What Does Cancer Cost?

 The cost of cancer care can be considered in terms of either total spending or the cost of care for an individual patient. On the national level, it is estimated that in 2010, $124 billion was spent on cancer care in the United States. This represents a more than 400% increase in spending since earlier estimates of $27 billion in 1990.¹ Total spending figures do not directly affect individual patients, but they have focused attention on the need to “bend the curve” of projected growth in health care spending over time.

Increasingly, a favored method to “bend the curve” among insurance providers is to shift more of the costs of care to patients in the form of higher premiums, co-pays, and deductibles. Although the immediate effect of such policies is to shift costs to patients, one of the goals is to make the patient, or “consumer,” more sensitive to the cost of care so that he or she has a greater stake in use of the health care system.

Out-of-pocket expenses for patients with cancer are increasing faster than overall costs of cancer care.² Although increasing patients’ exposure to the costs of care can undoubtedly affect health care decisions, whether it leads to higher-quality decisions without adversely affecting outcomes is unclear. As this trend continues, research into the nature and effect of these policies is needed.

How Does Cost Affect Care?

For decades, it has been clear that a lack of health insurance leads to patients with cancer presenting with more advanced stages of disease at the time of diagnosis and to worse outcomes.³ The recent passage of the 2010 Patient Protection and Affordable Care Act promises to reduce the ranks of the uninsured, currently estimated at more than 50 million people.

Given ongoing legal challenges and political controversy, whether the law will survive in its current form and what effect it ultimately will have on access to cancer care and cost remains uncertain. Limitations in access to appropriate cancer care are not restricted to those without health insurance.

More than 25 million additional Americans may be considered “underinsured” based on inadequate coverage for medical expenses. Ideology aside, we likely can agree that all patients with cancer should have access to quality health care, and that guaranteed access to screening, timely diagnosis, treatment, and supportive care should be our priority for any emerging policy. At this time, there is a patchwork of services and support that can provide financial assistance for patients with cancer.

Many state, county, and local institutions, including hospitals and some practices, have patient-assistance programs for individuals meeting a threshold of financial need. In addition, pharmaceutical companies often provide assistance or free drugs for patients who are uninsured and who meet financial qualifications.

For underinsured patients, there are a number of co-pay assistance foundations, such as the HealthWell Foundation and Patient Access Network, which help provide access to high-cost medications. ASCO’s patient-focused website, Cancer.Net, lists organizations that can provide assistance and information to help patients understand and cope with the costs of care.

Despite the availability of financial assistance programs, one-third of patients with cancer report trouble paying their bills and up to 25% report exhausting their savings.⁴ These figures are perhaps not surprising in light of the costs of treatment, particularly with novel molecularly targeted agents. Drugs that extend median survival by several months may be priced at as much as $100,000 per patient.⁵

In the United States, unlike many countries, cost effectiveness is not considered in drug-approval decisions, and the challenge of assessing value often falls to physicians and patients.⁶ As physicians, we are frequently motivated but poorly equipped to assist our patients in understanding and dealing directly with cost when considering treatment decisions.

A recent survey of U.S. oncologists found that out-of-pocket costs to patients are considered but rarely discussed directly with patients. Less than half of oncologists responding to the survey reported comfort with making cost-effectiveness decisions .⁷

Given the large variations in prescription drug coverage and copayments, it may be particularly difficult for oncologists to advise their patients regarding the financial effect of oral therapy for cancer or symptom management. Inability to pay for prescription medications can be a barrier to adherence and must be assessed in clinic.

Costs, Compassion at the End of Life

In addition to the general challenge of dealing with costs of care throughout the course of illness, a substantial portion of total spending for cancer care occurs within the last weeks and months of life. What percentage of this care is appropriate and consistent with informed decisions on the part of patients and physicians is unclear, but several studies show that a minority of patients with advanced cancer report even discussing their preferences with their physicians.^8,9

The roughly one-third of patients with incurable cancer who do report such discussions appear to be more likely to have care consistent with their wishes, less likely to be placed on a ventilator or to die in an intensive care unit, more likely to receive hospice care, and more likely to experience lower costs of care in the last weeks of life.⁸

The unique clinical circumstances and preferences of the patient and his or her family must guide medical decisions for patients with advanced cancer. Realistic discussions of prognosis, the potential benefits of both disease-directed and palliative therapy, and the likely effect of decisions with regard to symptoms, quality of life, financial costs, and survival can help patients make decisions that best match their goals and preferences.¹⁰

How We Can Help

The oncology community has the opportunity to help our patients cope with the costs of cancer care both at the bedside and through research and policy initiatives. The ASCO Taskforce on Cost of Cancer Care was established under the leadership of Lowell E. Schnipper, MD, to address mounting concerns over the cost of cancer care and to provide guidance to physicians, patients, and the profession on how to confront issues related to cost.

In 2009, the task force published a guidance statement in which Neal J. Meropol, MD, and colleagues advocated for discussion of costs of care between patients and physicians, and the development of educational and clinical support tools to facilitate these discussions.¹¹

From a research perspective, we need better data on overall costs of care in different cancer settings, drivers of increasing cost, and the effect (or lack thereof) of cost on medical decision making among patients and physicians. At the bedside, our primary obligation is to consider our patients’ well-being, in the fullest sense of the word. This includes determination of the patient’s diagnosis, prognosis, and best treatment options, but also consideration of how therapeutic decisions will affect the individual and his or her caregivers financially.

Recognizing the Challenge

The rising cost of cancer care is, in part, a result of our success in developing new and improved means to diagnose and treat disease. Cancer is the leading cause of death of people younger than age 85 in the United States; the fact that cancer care consumes just 5% of total health care spending could be viewed as appropriate, or even inadequate.

However, we must recognize the challenge posed by highly expensive novel interventions that offer perhaps months, but rarely years, of improved survival in many settings. In an era of constrained resources on the national and international level, and at a time when we are facing proposals for severe cutbacks in scientific research, there is a need for the oncology community to contribute to finding the solution to this bending of the cost curve while improving quality.

Most importantly, we must better prepare ourselves to inform our patients of the direct cost implications of medical decisions and to help ensure that all patients gain access to appropriate cancer care.

About the Author:

Dr. Peppercorn, a breast cancer specialist, is an Associate Professor of Medicine in the Division of Medical Oncology at Duke University School of Medicine. He is the Incoming Chair of the ASCO Ethics Committee.

References

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10. Peppercorn JM, Smith TJ, Helft PR, et al. American Society of Clinical Oncology Statement: Toward Individualized Care for Patients With Advanced Cancer. J Clin Oncol. 2011;29:755-60.
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