Financial toxicity high for lung cancer patients
By Alicia Gallegos
When making decisions about lung cancer treatment, a patient’s finances frequently affects the care route they choose, said Leah Backhus, MD, chief of thoracic surgery at VA Palo Alto in Stanford, Calif.
“Patients often travel long distances to receive specialized lung cancer care,” said Dr. Backhus, chair of the American Cancer Society’s Task Group on Lung Cancer in Women. “With the exception of surgery, which has the shortest duration, both chemotherapy and radiation therapy both require lengthy treatments with frequent trips for treatment sessions or check-ins for symptom management. Even if the patients are in a stable financial situation, travel is often still a concern because of time away from work, responsibilities, and/or inconvenience. Thus the question may become: receive care far away and deal with the additional cost of travel or receive local care – or no care – which might be substandard?”
Travel costs are just one component of the financial toxicity that can affect lung cancer patients during their care journey. Financial toxicity is defined as monetary distress caused by out-of-pocket costs associated with cancer treatment, such as copayments, high deductibles, lost wages, and incurred debt. Data show that financial toxicity associated with cancer care can result in treatment noncompliance, psychological distress, reduction of other vital life expenses, bankruptcy, and even increased death.
Leah Backhus, MD
Data show that financial toxicity associated with cancer care can result in treatment noncompliance, psychological distress, reduction of other vital life expenses, bankruptcy, and even increased death.
In 2010, an estimated $157 billion was spent on total cancer care, according to The National Cancer Institute, nearly $15 billion of which was spent on lung cancer. By 2020, annual cancer care is projected to cost $174 billion. Cancer patients spend a median of $1,730-$4,727 annually in out-of-pocket treatment-related expenses, about $1,000 higher than patients without cancer, according to a 2014 study published in Future Oncology. For cancer patients aged 18 to 64, out-of-pocket costs exceed 20% of their income, another study found.
“Cancer treatment is expensive; even traditional types of treatment such as surgery, radiation therapy, and chemotherapy can cost tens of thousands of dollars per patient,” said Kenneth Kehl, MD, a thoracic oncologist at Dana-Farber Cancer Institute in Boston. “Patients with lung cancer are especially vulnerable to these direct costs, especially because at least half of patients with lung cancer already have advanced disease when they are diagnosed, and the treatment of advanced lung cancer has been revolutionized over the last decade by targeted therapy and immunotherapy. These new types of treatments have brought about meaningful benefits for patients, but they are also among the most expensive tools in our anticancer toolkit.”
Kenneth Kehl, MD
Immunotherapy, which use parts of a patient’s immune system to treat cancer, generally cost more than $100,000 annually because of research and manufacturing expenses. An analysis in the journal Cancer found that patients paid an annual average of between $5,000 and $10,000 for cancer drugs before 2000, a price that rose to more than $100,000 in 2012. In 2015, the annual median price of the 13 cancer drugs approved by the Food and Drug Administration was $145,000.
Insurance programs help mitigate the high costs, Dr. Kehl added, but insurers do not cover all expenses. Medicare, for example, leaves 20% of outpatient costs to patients unless patients enroll in supplemental insurance or managed care programs. Private insurance, whether employer-sponsored or purchased on the individual market, increasingly comes with high deductibles and out-of-pocket maximums that can be prohibitive for some patients, said Dr. Kehl, whose research focuses on the effect of health care delivery strategies on access to care and outcomes for lung cancer patients.
“Patients generally don’t make choices about insurance options with the assumption or knowledge that they are about to be diagnosed with cancer and may not be familiar with the cost structures or restrictions on available providers that may come with complicated insurance plans,” Dr. Kehl said. “Increasingly, lung cancer also impacts socioeconomically disadvantaged populations, given differences in smoking rates, and these populations often don’t have the resources to absorb lost income from patients and caregivers due to time spent on cancer care.”
A grave impact
Financial toxicity associated with cancer care results in some patients skipping treatments or going without needed prescriptions, said Fumiko Chino, MD, chief resident in radiation oncology at Duke University and a researcher at the Duke Cancer Institute, both in Durham, N.C.
A 2013 study of 254 insured cancer patients published in The Oncologist found that, to save money, 20% of patients took less than the prescribed amount of medication, 19% partially filled prescriptions, and 24% avoided filling prescriptions altogether. In addition, 68% of patients cut back on leisure activities, 46% reduced food and clothing, and 46% used their savings to defray out-of-pocket expenses.
“If patients are cutting back on essentials like food and clothing or if they’re cutting back on their medications, that really can lead to downstream results including decreased efficacy of their cancer treatment.”
“It illustrates how common this problem is in terms of the burden that patients are feeling,” Dr. Chino said. “If patients are cutting back on essentials like food and clothing or if they’re cutting back on their medications, that really can lead to downstream results including decreased efficacy of their cancer treatment.”
Fumiko Chino, MD
More difficult to measure is the psychological impact triggered by such financial distress, experts say. A 2017 study in the Journal of Oncology Practice found that nearly 30% of 120 insured cancer patients experienced high or overwhelming financial distress, while 65% had levels of overall distress considered clinically significant, and 66% of patients reported a component of emotional distress. Another study found that, of 654 cancer patients, half reported increased financial stress and 32% of patients reported increased financial strain. About a third of the patients suffered from depression and anxiety due to financial distress.
Dr. Chino knows firsthand the emotional burden caused by financial toxicity. She and her husband underwent a financial crisis when his insurance failed to fully pay for treatment following his neuroendocrine carcinoma diagnosis. The medical bills piled up, forcing the couple to exhaust their savings and take on heavy debt.
“We made significant sacrifices in order to afford his care,” said Dr. Chino, who was inspired to become a physician after the ordeal. “It put an extreme burden on our quality of life and the quality of his health care. Unfortunately, after he died, I was left with a significant debt.”
Patients diagnosed with cancer are more than twice as likely to file for bankruptcy after a cancer diagnosis, compared with those who do not have cancer, according to a 2013 analysis in Health Affairs. A subsequent study by the same investigators found that cancer patients who filed for bankruptcy faced a 64% higher risk of mortality. Mortality rates among patients with lung cancer who filed for bankruptcy were significantly higher than for patients with the same cancer who did not file for bankruptcy.
The bankruptcy and mortality studies are important because they demonstrate the potential harm from extreme financial toxicity, said Yousuf Zafar, MD, a researcher who studies the cost of cancer care at Duke University.
“While prior studies have shown how financial toxicity can reduce adherence and quality of life, this was one of the first studies to suggest an impact on mortality,” he said.
How to fight financial toxicity
To reduce the financial distress that can accompany cancer care, cancer experts say solutions big and small are necessary. Raising patient awareness of financial assistance programs is a start. At Yale Cancer Center, for instance, social workers work closely with patients to help address financial needs and concerns during treatment, said Roy Herbst, MD, a professor of pharmacology and chief of medical oncology at Yale Cancer Center in New Haven, Conn. Dr. Herbst added that most large pharmaceutical companies offer prescription assistance programs and copay help. A number of clinical trials also offer enrollment at no cost, and some trials provide travel assistance and cover parking and lodging expenses, Dr. Herbst noted.
“In the future, I think the costs [of cancer care] will increase, but I think the help and the support will increase as well,” Dr. Herbst said. “The goal is to get as many of these drugs to patients as [possible].”
More broadly, the United States needs lower, more sustainable prices for treatment and less cost sharing for high-value interventions, Dr. Zafar said.
“In the meantime, having a cost conversation with patients is important to identify the problem,” Dr. Zafar said. “In doing so, we can refer patients to financial assistance programs in a timely fashion.”
Policy regulations that regulate U.S. drug companies and what they can charge for cancer medications would also greatly reduce financial burdens on patients, Dr. Chino said. Further stabilizing health insurance would also be helpful, she said.
Dr. Zafar would like to see more opportunities for patients to share in the benefits of high-value practice.
“Innovative care delivery in oncology should, as much as possible, involve patients in the value proposition,” he said.
In a 2018 viewpoint published in JAMA Oncology, Dr. Zafar wrote that payment reforms aimed at closing gaps in quality and efficiency by the Center for Medicare & Medicaid Innovation have largely overlooked ways to help patients reduce cost burdens. For example, he writes, medical practices that participate in the center’s Oncology Care Model (OCM) receive a monthly enhanced oncology services payment of $160 per beneficiary, which is intended to cover the cost of the patient-centric care model because many needed services have little or no fee-for-service reimbursement.
“This payment also can pay for other in-kind patient benefits, but we know of few practices that have done so,” Dr. Zafar wrote. “The lack of active patient incentives and engagement represents an important opportunity to improve efficiency and quality while reducing patients’ financial toxicity.”
Unfortunately, there is no magic bullet to alleviate the financial burden of cancer care, said Dr. Backhus.
“The reality is that each situation is different and concentrating on finances is a distraction for the patient to their overall care,” she said. “Most large cancer centers have dedicated social workers and cancer navigator programs to assist patients with ‘fitting in’ the cancer care within their lives. Sadly, although we are very good at identifying needs, the resources to address the gaps in social and financial support are woefully inadequate for those with the highest need-burden. We simply need to do more.”
Yousuf Zafar, MD
Cost And Coping
Diagnosis and Therapy