Oncologists confront "financial toxicity" of cancer care

Studies are showing sizable numbers of patients burdened by the cost of treatment -- some to the point of bankruptcy.

By — Posted June 20, 2011

Print  |   Email  |   Respond  |   Reprints  |   Like Facebook  |   Share Twitter  |   Tweet Linkedin

The toxicity of chemotherapy and other drug treatments for cancer has extended beyond side effects such as nausea and nerve pain. It has now extended to a patient's ability to pay the mortgage and buy groceries while undergoing care, said the author of a study looking at the financial impact of cancer treatment.

Amy Abernethy, MD, associate professor in the Division of Medical Oncology at Duke University Medical Center, helped write one of a handful of studies presented at the June meeting of the American Society of Clinical Oncology that found the rising cost of cancer care could impact treatment decisions and even lead to patients forgoing treatment because they cannot afford it.

At ASCO, discussion turned toward the need for physicians to talk frankly with patients about the cost of care -- and whether patients believe the amount of life it buys is worth a bill they might not be able to pay.

"Overall, this study provides a patient-centered view of a reality of modern-day cancer care -- something that we call 'financial toxicity,' " Dr. Abernathy said of the joint study between researchers at Duke University Medical Center in North Carolina and Dana-Farber Cancer Institute in Boston.

Researchers surveyed 216 cancer patients from across the country who sought help from the HealthWell Foundation to pay for their cancer care. Although this study focused mostly on older women undergoing treatment for breast cancer who were covered by Medicare (83% also had prescription drug coverage), other studies have found that financial burdens are felt by patients with private insurance as well.

A government-led study conducted by the Agency for Healthcare, Research and Quality, published online May 31 in the Journal of Clinical Oncology, found 13.4% of cancer patients had high out-of-pocket financial burdens, compared with 9.7% of those with noncancer chronic conditions. The group with the highest burden were those with private nongroup plans.

Though the impact is less severe for those with private group insurance and public insurance, the number of patients in each category is significant, said Neal Meropol, MD, chief of the Division of Hematology and Oncology at University Hospitals Case Medical Center & Case Western Reserve University School of Medicine in Cleveland.

Dr. Meropol was not involved with either study but participated in the sessions at the ASCO meeting where the findings were discussed.

"The move toward increased cost-sharing in high-deductible health plans, increased premiums and tiered formularies all shift the cost burden to patients and force them to make day-to-day decisions on how to integrate health care costs with other discretionary spending," he said.

Cancer and bankruptcy

A study conducted by researchers at the Fred Hutchinson Cancer Research Center in Seattle found that as cancer patients' survival time increases, so do the chances they will declare bankruptcy. Researchers compared U.S. Bankruptcy Court records to cancer registry data from nearly 232,000 adult cancer survivors in western Washington over 14 years. They found that, on average, bankruptcy rates quadrupled within five years of a cancer diagnosis.

The growing financial burden on those undergoing cancer treatment could put physicians in the position of prescribing treatments that could save their patients' lives but force them into bankruptcy, poverty or even homelessness -- if they could scrape up the money to receive the treatment in the first place. This is especially troubling given the fact that advancements are being made in cancer treatments that could lead to much higher survival rates.

Another study presented at the ASCO meeting was published online June 5 in The New England Journal of Medicine. It found that the experimental drug vemurafenib and the newly approved Yervoy (ipilimumab) can improve survival rates for patients with advanced melanoma, a population that hasn't had many treatment options in the past. Yervoy will cost $120,000 for a four-dose treatment at $30,000 per dose.

The AHRQ study found the largest expenditures for someone undergoing cancer treatment are for prescription drugs and ambulatory care.

Nancy Carteron, MD, a rheumatologist in San Francisco who serves on the board of the HealthWell Foundation, said the inability of patients to meet out-of-pocket obligations is one way that treatment decisions are made for them. "If you can't afford it, you can't get it," she said.

The nonprofit HealthWell Foundation helps patients meet co-payments, coinsurance and premiums while undergoing treatment for an important medical treatment. The foundation, based in Gaithersburg, MD, sponsored the Duke study.

Dr. Carteron said she often faces the issue of a patient's treatment decision being made because of financial constraints.

"It's very frustrating with certain illnesses like [rheumatoid arthritis], because you know 99% of the time you can make someone better with the options we have now, and to have people not even have the option for that," she said.

Talking cost of care

ASCO published a report in 2009, written by Dr. Meropol, to help educate physicians on how to discuss finances when reviewing treatment options.

The study quotes a 2007 survey of oncologists that found 30% sometimes omit discussions of payment and 16% always or mostly avoid the discussion of treatment cost.

Didem Bernard, PhD, an economist who wrote the AHRQ report, said she does not believe many physicians are aware of the financial burdens associated with cancer care.

"They may know the cost of specific treatments for cancer, but do they know how much insurance will cover? How much the patient will have to pay out of pocket? Do they know how much their patient has to spend on health care unrelated to cancer? That is why I think this study will be helpful to clinicians and patients," she said.

Dr. Carteron agrees. She said the process of finding out how much a plan will cover for drugs or treatment is "so convoluted" it's nearly impossible for physicians to know what their patients will have to pay out of pocket.

She said some physician colleagues don't believe it's their job to discuss treatment costs. But they probably would feel differently if they knew how it was affecting their patients, she said. It's also a conversation many patients, especially older ones, avoid, because they believe it would place an unnecessary burden on their physicians.

"There needs to be more of an open dialogue," Dr. Carteron said.

Dr. Meropol said when discussing treatment options, the conversation needs to include not only a comparison of benefits versus adverse effects, but also a frank discussion about the value of each treatment.

"It is no longer sufficient to simply identify that a treatment's benefit outweighs adverse effects," Dr. Meropol wrote in the 2009 ASCO report. "Rather, oncologists must be able to discuss how much benefit might be expected from a particular therapeutic option. This information is expected to be increasingly relevant to patients as the expense of treatment increases."

He said a patient must be fully educated on the expected benefits of a drug and whether it is lifesaving, or would extend their life by only a few months.

Though physicians cannot make decisions for patients, they should arm them with all the scientific-based information necessary to make a decision, he said.

Dr. Carteron said patients should let their physicians know if they run into a problem paying for a prescribed treatment. Physicians should keep a list of resources to help patients who can't meet their out-of-pocket obligations. If the physician is uncomfortable having this discussion with patients, someone in his or her office should do it.

"Patients trust their doctor's office," she said. "If you can just help guide them, they feel a little more comfortable going down that pathway."

Back to top


Where to find financial assistance for patients

In addition to financial assistance programs run by most pharmaceutical companies, private organizations provide help through patient advocacy programs.

  • American Society of Clinical Oncologists, Managing the Cost of Cancer Care (link).
  • HealthWell Foundation (link).
  • Cancer Financial Assistance Foundation (link).
  • CancerCare's Financial Assistance Program (link).
  • National Foundation for Transplants (link).
  • The Leukemia and Lymphoma Society's Patient Financial Aid Program (link).

Back to top

External links

"Improved Survival with Vemurafenib in Melanoma with BRAF V600E Mutation," The New England Journal of Medicine, published online June 5 (link)

National Estimates of Out-of-Pocket Health Care Expenditure Burdens Among Nonelderly Adults With Cancer: 2001 to 2008, Journal of Clinical Oncology, published online May 31 (link)

"Cancer diagnosis as a risk factor for personal bankruptcy," American Society of Clinical Oncology 2011 meeting abstract, June 6 (link)

"American Society of Clinical Oncology Guidance Statement:The Cost of Cancer Care" Journal of Clinical Oncology, Aug. 10, 2009 (link)

Back to top



Read story

Confronting bias against obese patients

Medical educators are starting to raise awareness about how weight-related stigma can impair patient-physician communication and the treatment of obesity. Read story

Read story


American Medical News is ceasing publication after 55 years of serving physicians by keeping them informed of their rapidly changing profession. Read story

Read story

Policing medical practice employees after work

Doctors can try to regulate staff actions outside the office, but they must watch what they try to stamp out and how they do it. Read story

Read story

Diabetes prevention: Set on a course for lifestyle change

The YMCA's evidence-based program is helping prediabetic patients eat right, get active and lose weight. Read story

Read story

Medicaid's muddled preventive care picture

The health system reform law promises no-cost coverage of a lengthy list of screenings and other prevention services, but some beneficiaries still might miss out. Read story

Read story

How to get tax breaks for your medical practice

Federal, state and local governments offer doctors incentives because practices are recognized as economic engines. But physicians must know how and where to find them. Read story

Read story

Advance pay ACOs: A down payment on Medicare's future

Accountable care organizations that pay doctors up-front bring practice improvements, but it's unclear yet if program actuaries will see a return on investment. Read story

Read story

Physician liability: Your team, your legal risk

When health care team members drop the ball, it's often doctors who end up in court. How can physicians improve such care and avoid risks? Read story