Financial toxicity a lingering, often unexpected burden for cancer survivors

July 13, 2020

The completion of active treatment is a milestone for all cancer survivors.

Yet, even as survivors prepare to transcend the physical, emotional and social repercussions of their cancer journey, many are left with a constant reminder in the form of overwhelming financial hardship.

The economic distress caused by the cost of cancer treatment, often referred to as financial toxicity, can leave cancer survivors struggling to maintain quality of life.

A study by Yousuf Zafar, MD, MHS, associate professor of medicine, public policy and population science at Duke Cancer Institute, and colleagues evaluated the effects of financial toxicity among cancer survivors.

“We found that, as treatment-related financial distress increased, quality of life decreased,” Zafar told Healio. “Interestingly, that same inverse relationship was seen among patients in treatment and those who had been off treatment for a year or more. What that suggests to me is that even off treatment, patients are still struggling with the financial burden of their care. They’re paying it off for years afterward and it still impacts them, even if they’re not sitting in that infusion chair.”

Causes of toxicity

It is difficult to precisely determine the scope of financial toxicity, because some of the data are self-reported by patients, Zafar said.

“It’s hard to know the extent of the problem, but some reports estimate that as many as 40% to 60% of patients with cancer and cancer survivors are experiencing some degree of financial toxicity,” Zafar said. “In terms of severe financial toxicity — and this is subjective because it’s based on how a person defines severity — it’s probably somewhere around 15 to 20%. So, it’s fairly high.”

One reason financial toxicity has become an increasingly challenging issue is because patients are remaining on cancer treatment regimens for longer periods of time, Zafar said.

“This is actually good — it means that the treatment is working,” he said. “But it also means that patients have an overall greater exposure to drugs, and those drugs have become dramatically more expensive over the past 20 years. So, patients are on treatments longer, and the treatment they’re getting is much more expensive.”

The costs of many of these drugs have become prohibitive for some patients with cancer, according to Bishal Gyawali, MD, PhD,assistant professor at Queen’s University in Ontario, Canada, and an affiliated faculty at Program on Regulation, Therapeutics and Law at Brigham and Women’s Hospital.

“The cost of cancer care has skyrocketed,” he told Healio. “Cancer drug prices have increased at a steep rate, exceeding the rate of inflation. Many cancer drugs regularly cost more than $150,000 a year.”

Meanwhile, insurance companies increasingly have shifted of the cost of medical care — including cancer care — to patients through higher deductibles, higher co-insurance and higher copayments.

“The co-insurance is especially important because it’s a percentage of the list price that patients pay out of pocket,” Robin Yabroff, PhD, epidemiologist and senior scientific director of health services research at American Cancer Society, told Healio. “Most oral cancer drugs are considered specialty drugs, and co-insurance for specialty drugs can be as high as 30%. If cancer drugs are delivered through infusion, coinsurance is frequently 20%. Those without health insurance coverage may be responsible for all the costs of cancer treatment.”

Although drug prices and insurance issues represent major components of financial toxicity, unanticipated treatment-related costs often contribute to the problem.

“Even people with generous health benefits can accumulate substantial other costs related to treatment, such as child care, transportation and changes in work hours or employment,” Nora Henrikson, PhD, MPH, assistant investigator at Kaiser Permanente Washington Health Research Institute, told Healio. “Entire households can develop financial hardship, especially if one person needs to become a caregiver.”

For some cancer survivors, financial struggles related to cancer care can lead to a bankruptcy filing.

MatthewP. Banegas, PhD, MPH, MS, an investigator at the Center for Health Research at Kaiser Permanente, has conducted research on bankruptcy among cancer survivors.

“Medical debt and bankruptcy remain significant issues for cancer survivors in the U.S.,” Banegas told Healio. “Health care costs continue to rise, as do the out-of-pocket costs that patients must pay for their care and treatment. The recent COVID-19 pandemic will likely exacerbate patients’ financial struggles, as millions face unemployment, reduced income, lost insurance and piling bills for everyday basic needs.”

Populations at risk

Although anyone who undergoes cancer treatment could face financial toxicity, certain populations — including younger survivors — may be more vulnerable.

“Younger patients and survivors often haven’t had the opportunity to accumulate assets,” Yabroff said. “Their income may be lower. There may also be disruptions to education or career development.”

The costs of cancer treatment also can impact younger survivors’ efforts to start a family.

A 2018 commentary published in Cancer assessed the intersection of financial toxicity and family building among young adult cancer survivors. According to the commentary authors, young cancer survivors incur higher out-of-pocket medical costs than their peers without cancer, spending an estimated $3,170 more per year.

Additionally, cancer survivors whose treatments caused infertility face costly options for assisted reproduction. Some younger cancer survivors also must contend with child care issues.

“These are people who are just starting out in life,” Zafar said. “They might not have as much of a nest egg saved up, or they have young families and children to care for. Probably a little bit of all of these things contributes to greater risk [for] financial toxicity in younger patients and survivors.”

Survivors who have undergone certain types of treatment have a greater likelihood of dealing with financial toxicity, Steven S. Coughlin, PhD, MPH, professor of epidemiology and nursing in the department of population health sciences at Medical College of Georgia at Augusta University, told Healio.

“Therapies for some cancer types, such as hematologic cancer and lymphoma, are often taken for long periods of time,” Coughlin said. “These longer-term treatments may lead to increased risk [for] financial toxicity.”

‘No standardized approach’

In some cases, patients may not be fully aware of the potential cost of their cancer treatment before it is initiated. There is no standard regarding the appropriate time to discuss the financial implications of treatment, Zafar said.

“I think we could do a lot more to communicate with patients about the potential cost of treatment,” he said. “It’s done differently at different institutions and between providers, and I think that’s part of the problem. There’s no standardized approach. We don’t know the best way to discuss it, or the best time to discuss it.”

Some institutions offer financial navigation or counseling to patients, but these services often are available on an as-needed basis and are not necessarily part of protocol, Zafar said.

“In my practice, if I’m prescribing an oral anticancer drug where I know the patient is going to have a copay for it, I will always ask our pharmacist to look up how much the patient’s copay will be,” he said. “I’ll talk to the patient about the treatment and its potential toxicities. In the meantime, my pharmacist is trying to figure out how much the patient may have to pay out of pocket so that can be factored into their decision-making process.”

Any cancer treatment or survivorship plan should take into account a patient’s financial circumstances and socioeconomic status, Banegas said.

“Understanding patients’ financial circumstances is a key component of patient-centered care,” he said. “By collecting this information, health care providers and systems have the opportunity to develop and adapt care plans that offer patients the opportunity to achieve the best health outcomes and avoid financial hardship.”

Personalized outreach

At Kaiser Permanente, Banegas and Henrikson are studying an intervention aimed at informing patients about the financial toll of cancer treatment.

The CAFÉ study is a randomized trial to test the CAFÉ (Cancer Financial Experience) intervention, which was developed based on the team’s previous research. The financial navigator-based intervention consists of 6 months of personalized outreach and assistance with financial concerns. It includes coordination with the oncology team, estimations of costs to support shared decision-making, patient planning and budgeting, and referral as needed to resources for financial assistance.

The study will include several hundred patients with newly diagnosed cancer. Researchers will compare self-reported financial hardship between patients receiving the CAFÉ intervention vs. those receiving a standard list of financial support resources.

“Our previous studies have suggested that cancer survivors want to learn about the costs of care in time to discuss them with their clinicians and teams,” Henrikson said. “Many people want to be asked about their financial concerns at the time of treatment planning. The best way to do this is the one thing we are testing in our new study.”

Multifactorial and multilevel

Because financial toxicity stems from so many factors, there is no simple solution to the problem, Yabroff said. Additionally, she said the issue will need to be addressed at many levels.

“Any solutions have to be multifactorial, but also multilevel,” she said. “There are some interventions that can happen at the patient level, such as making sure patients have health insurance coverage, and that the coverage they have is helping them to afford effective treatment. We can make sure that providers and patients have a clear and comprehensive discussions about the expected costs and benefits of treatment. We can ensure that employers offer accommodations for [patients with cancer] undergoing treatment, such as flexible work schedules and paid sick leave.”

Providing resources at the state and local levels and enacting policy change at the federal level will be essential, Yabroff added.

Zafar agreed.

“We need to see policy changes,” Zafar said. “We need lower drug prices, everything from allowing price renegotiation to revamping our drug approval process. We need better education for clinicians about how to talk about this topic, and we need to empower patients so that they understand they’re not alone. It really needs to be a multi-stakeholder, multipronged approach to this problem.”

Gyawali outlined a four-step approach to addressing financial toxicity.

“As with any problem, first we have to acknowledge that the problem exists. Until a few years ago, people didn’t accept that financial toxicity is a real clinical issue and not just a sociopolitical one,” Gyawali said. “Next, we have to quantify or measure the problem. Without measuring a problem, we can’t understand the magnitude of the burden. Third, we have to communicate the problem to relevant stakeholders, such as policymakers, regulators, physicians, patients and the community. Finally, we have to solve the problem. Various practical solution measures are possible at patient, physician, institutional, societal, national and international levels. This involves a multistep process.”

Everyone involved in the delivery of cancer care can and should take steps to minimize financial toxicity, Gyawali said.

“Everyone has a role to play in addressing the problem,” he said. “For example, at the international level, organizations like ASCO and ESMO should discourage low-value cancer drugs in their guidelines.

“At the national regulatory level, price negotiations and regulatory approvals based on cost-effectiveness are important,” he added. “At the hospital level, increased cost transparency and provision of a financial counselor will help address financial toxicity. At the physician and patient level, increased awareness and discussion of financial toxicity is important.”

Increasing public awareness of financial toxicity will be essential, Banegas said. Recent stories in the mainstream media have drawn attention to the problem, he added.

“These stories help bring further attention to this important issue and highlight the need for efforts and resources to address medical financial hardship,” he said. “We need a coordinated, comprehensive approach that leads to changes in multiple aspects of the health care system to achieve sustained success.”

How clinicians can help survivors

It might not occur to cancer survivors to discuss financial toxicity with any of their physicians after treatment is over. However, there are ways clinicians can provide help to the cancer survivors in their care.

“What clinicians can do for survivors is exactly the same as what clinicians can do for their patients on treatment: keep an open line of communication,” Zafar said. “It’s very reasonable, periodically, to ask a patient, ‘How are you able to afford your care? Are you still having problems affording treatments you were on months or even years ago?’ If the patient answers ‘yes,’ I don’t think a clinician can necessarily fix that problem, but we can absolutely direct that patient to the right resource, be it a social worker or a financial counselor or a pharmacist.”

However, by the time a patient reaches the survivorship stage, it is likely that at least some of the damage from financial toxicity already has been done, Zafar said.

“It’s most important to try to prevent this problem as much as possible rather than trying to fix it,” he said. “Our social workers have told me over and over that it’s much easier to prevent this problem than it is to dig a patient out of medical debt.”

Support families fighting financial toxicity of cancer – here.

For more information:
Matthew P. Banegas, PhD, MPH, MS, can be reached at matthew.p.banegas@kpchr.org.
Steven S. Coughlin, PhD, MPH, can be reached at scoughlin@augusta.edu.
Bishal Gyawali, MD, PhD, can be reached at bg.bishalgyawali@gmail.com. Follow him on Twitter at @oncology_bg.
Nora Henrikson, PhD, MPH, can be reached at nora.b.henrikson@kp.org.
Robin Yabroff, PhD, can be reached at robin.yabroff@cancer.org.
Yousuf Zafar, MD, MHS, can be reached at yousuf.zafar@duke.edu.