aria (not her real name) was terrified when her 5-year-old son, Rafe, was diagnosed with a rare form of cancer. She worried about his chances of survival and the side effects of the proposed treatment. What she didn’t anticipate was the financial toll his illness would take on the family. As Rafe’s medical needs intensified, caring for him became all-consuming and Maria quit her job. Although her husband was still employed, the family’s income fell to half of what it had been, and they were faced with mounting medical bills on top of the normal day-to-day expenses like groceries and gas.
The financial stress ramped up quickly. Months into Rafe’s treatment, with the family’s savings obliterated, they fell behind on mortgage and utility payments. Neighbors held a fundraising drive, gathering nearly $10,000, but by then the bills were so great that the money was gone within a week. Then the power company came to shut off the electricity. By this time, Rafe was on a chemotherapy infusion pump, and the backup batteries would last only a few hours. Where to turn? What to do?
We heard about Maria’s situation and similar crises at a recent retreat of Family Reach, a national nonprofit dedicated to providing assistance to families who have fallen into severe financial distress after a family member was diagnosed with cancer. Horrific stories like Maria’s are becoming more common as the cost of treating cancer and caring for people with it grows more expensive. There is no silver bullet, but measures that promote better cost management of treatment and well-targeted financial assistance could not only relieve financial distress but also produce better outcomes and improved quality of life.
The National Cancer Institute advises physicians and patients to understand that cancer’s financial impact affects both family budgets and patients’ health. According to the institute, when a loved one develops cancer, the family’s risk of significant financial hardship becomes startlingly high:
- Between 33 percent and 80 percent of cancer survivors exhaust their savings to finance medical expenses.
- Up to 34 percent borrow money from friends or family to pay for care.
- For those who fall into debt, the level of debt is substantial. In a study of colon cancer survivors in Washington state, the mean debt was $26,860.
- Bankruptcy rates among cancer survivors are 260 percent higher than among similar households without cancer.
The problem of paying for cancer care is so vast that it has a name, financial toxicity, representing the “other” toxic side effect of cancer treatment. Patients who get into financial difficulty suffer high rates of emotional distress and lower quality of life. In a study we conducted with several colleagues, cancer patients who filed for bankruptcy had a 79 percent higher mortality rate compared to those who had the same cancer and did not file for bankruptcy.
With the revelations of significant problems with our health care system, it is tempting to point to a single group for blame. In reality, the problem appears to be quite complex. Rapidly rising drug and hospital costs, relatively weak insurance coverage, uneven and inadequate sick leave policies of most employers, and the generally poor financial state of many families in the United States all contribute to the problem. As a result, addressing financial toxicity will require tackling multiple issues simultaneously.
As part of the cancer moonshot initiative launched by Vice President Joe Biden, Family Reach has launched the Financial Treatment Project. It takes a multiple-pronged approach to addressing the financial health of patients and their families. Family Reach recently joined with our organization, the Hutchinson Institute for Cancer Outcomes Research, and Tufts Medical Center in Boston to measure the impact of the program on patients’ financial health and medical outcomes.
We hope to find simple, nonjudgmental ways to identify when the family of a newly diagnosed cancer patient faces a high likelihood of falling into financial distress. We will also evaluate the different ways to address the problem once a high-risk case is identified, ranging from bringing in financial counselors to tapping pharmaceutical company patient assistance programs to signing up uninsured patients for the Affordable Care Act.
One option to help patients burdened by financial toxicity is to create a program like Social Security Disability Insurance or unemployment insurance that serves those least equipped to endure financial hardship. It would kick in at the onset of a major cancer diagnosis and provide cash assistance for a defined period. This would go beyond the cost of care, as many families say that loss of income plus out-of-pocket costs for transportation, childcare, and caregiving are even bigger burdens than the copays.
Another option aims to encourage cost-saving treatments — ones supported by evidence — to achieve the same outcomes. We should adopt policies that eliminate out-of-pocket spending for newly diagnosed cancer patients provided that they and their doctors agree to follow guideline-recommended treatment plans. “For many cancers, guidelines include options that are considered equivalent therapeutically, yet the costs of the treatments might vary by fiftyfold or more,” said the National Cancer Institute.
The status quo is not acceptable. The number of Americans diagnosed with cancer is projected to rise nearly 75 percent between now and 2030. A focused effort to address the all-too-common problem of financial toxicity could help prevent at least some of the suffering that invariably comes with a cancer diagnosis.
Scott D. Ramsey, MD, is the director of the Hutchinson Institute for Cancer Outcomes Research in Seattle. Health economist Veena Shankaran, MD, is a medical oncologist and an associate member of the Hutchinson Institute for Cancer Outcomes Research.