It sometimes seems baffling to me: I put my life on the line for research to produce a cancer medication that — if and when it is put on the market — I probably could not afford. Its miraculous prolongation of my existence, for which I am ever grateful, deepens my concern about those who will be unable to benefit from it.
When I enrolled in a Phase I clinical trial in 2012, I knew that the pills had never before been tested on human beings. The risk was great, but the drug was free. Were it to be approved by the Food and Drug Administration, it would probably be priced like a similar drug for recurrent ovarian cancer, a Parp inhibitor called Rucaparib: about $20,000 a month. Would I have been able to negotiate with my insurance company to plunk down a mind-boggling $240,000 a year for a medication that might not have worked? Even if I could have guessed that this drug would be effective, where would I have come up with the money to keep paying for it? I have already used it for six years, at what could have been a cost of $1,440,000.
We are all familiar with the physical toxicity triggered ironically by both cancer and its treatments: pain, fatigue, nausea, weight loss, edema, constipation and diarrhea. These ills can be acute (harmful in the short term), sub-chronic (harmful for more than a year) or chronic (harmful over an extended period or a lifetime). Increasingly, investigators like Dr. S. Yousuf Zafar use the term financial toxicity to describe the acute, sub-chronic and chronic burdens of insured, underinsured and uninsured people impaired or destroyed by the high costs of care. While medicine transforms cancer into a chronic disease with which patients can live for an extended period of time, financial toxicity threatens to turn chronic, too.
A white paper by Family Reach, a national nonprofit dedicated to alleviating the financial burden of cancer, draws on earlier studies to explain that “Adult patients are 2.65 times more likely to file for bankruptcy than patients of a similar age without cancer. Patients who filed for bankruptcy had a 79 percent greater risk of early mortality than patients who did not.” In other words, cancer treatment escalates the possibility of penury, and treatment-produced fiscal catastrophes are tied to cancer deaths.
The links between cancer regimens or outcomes and economic ruin do not constrict only the elderly. Young adults with cancer have two to five times higher rates of bankruptcy than seniors, many of whom can depend on Medicare and Social Security. Most of the parents of kids with cancer experience work disruptions because of the need to accompany their children to lengthy treatments; about 15 percent quit their jobs or are laid off. Pediatric patients who live in poverty tend to relapse more often than well-off kids: housing instability, poor nutrition and unavailable transportation take a toll.
A cluster of insured patients suffers the acute or sub-chronic monetary injuries of cancer treatments because of the astronomical price of new protocols. The first CAR T-Cell immunotherapy drug was priced at about $475,000 for a one-time treatment. Enasidenib for acute myeloid leukemia costs about $25,000 a month.
Even with conventional treatment, out-of-pocket outlays for pricey drugs and procedures can skyrocket when people have high cost-sharing plans. Wage losses caused by hospital stays compound the problem that insurance rarely covers all the nonmedical expenses of standard care: travel, lodging at hotels, special nutritional and therapeutic and equipment needs, child- or elder-care assistance. Quite a few patients deplete their savings or go into debt.
Still others take less than the dosages of medicines prescribed or skip appointments, procedures and scans. The medical adjective for many of these patients, “noncompliant,” and the medical term for their behavior, “nonadherence,” are insulting. These patients are not perversely refusing to follow instructions; nor are they failing to stick with their doctor’s plan. They simply don’t have the cash for the medicine prescribed. Their solution — to forgo treatment — seems neither smarter nor dumber than the decision of others to do whatever it takes to cover costs.
In the International Journal of Radiation Oncology in 2016, Dr. Fumiko Chino, a radiation oncologist at Duke University Medical Center, reported the results of a survey on this second group. According to her study of patients’ anticipation of financial burdens, 50 percent of those polled were willing to declare bankruptcy to pay for continued care; 39 percent were willing to sell their homes. A large proportion of the participants had late-stage disease, suggesting that cancer patients may not fully comprehend the often limited or nonexistent gains such financial sacrifices tend to produce.
Dr. Chino has explained that she was drawn to investigate financial toxicity because in her 20s, she and her husband found that his student insurance did not cover most of the expenses they incurred in dealing with his fatal neuroendocrine carcinoma. As a young widow, she confronted a debt of hundreds of thousands of dollars.
When I polled friends in treatment on what they would pay to stay alive with cancer, quite a few admitted that they would go for broke to witness the inauguration of another president. But not one of them has been told by a physician what treatment will cost. Although prominent oncologists have called for transparent communications about finances between doctors and patients, in my circle they are not taking place.
Nor does the money drain end with an individual’s cure. Many survivors, especially children and young adults, require follow-up screenings and tests (to monitor the deleterious effects of successful treatments) that quite a few insurance plans will not cover.
With few viable solutions in sight, I am left pondering a paradox. What aims to save us can destroy us.
Susan Gubar, who has been dealing with ovarian cancer since 2008, is distinguished emerita professor of English at Indiana University. Her latest book is “Late-Life Love.”
