What would you pay to buy an extra year of life? If, for example, you had a deadly form of cancer, knew that you’d likely die if you weren’t treated, but had to pay out of pocket for your treatment, where would you draw the line? Would you pay $1000? Maybe $10,000? What about $100,000?
This is not a totally theoretical question for some cancer patients. The cost of cancer care is increasingly toxic, and treatment decisions are being influenced—in some cases dictated—by out-of-control costs. Medicine’s therapeutic potential is surpassing our ability to pay for it. We desperately need a national conversation about how to handle the gap between what medicine might accomplish and what society is willing and able to pay.
The decision I face, should my melanoma advance, is whether this cost justifies the severe side-effects I would likely experience despite the probability (about 80%) that the cancer would not respond to the drug. If, in this scenario, I were to opt for interleukin-2 instead—the current standard of care for patients with stage IV melanoma—the risk-benefit calculation is not significantly better.
I didn’t invent this hypothetic link between cancer and bankruptcy. A study conducted by researchers at the Fred Hutchinson Cancer 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.
So not only is the high and rapidly increasing cost of cancer care capable of bringing down Medicare within a decade, it can also drive people of modest means into poverty or even homelessness—if they could scrape up the money to receive treatment in the first place. Anyone for Occupy Cancer Care?
In the U.K., an advisory group to the British government has concluded that Yervoy is too expensive to be used by the U.K.’s healthcare system. The National Institute for Clinical Excellence stated that the drug “could not be considered a cost-effective use” of health funds. In the U.K., the government pays for most medicines, as long as they’re recommended by NICE. It usually adopts NICE’s conclusions, meaning that if the ruling stands, doctors in the National Health Service won’t be allowed to prescribe Yervoy. For most patients, IL-2 will have to suffice.
Choices like this are especially stark in the U.K., which maintains one of the most comprehensive publicly funded healthcare systems in the world. The United States will not be far behind, however, if Obama-Care leads to a wider application of cost-effectiveness based criteria for determining who gets what treatments. This is the direction we’re headed, whether the current healthcare initiative survives court challenges or not.
Unrealistic expectations of what drug therapy, surgery and radiation can do in patients with cancer will make this an extraordinarily difficult transition. In the U.S., doctors are paid for what they do, not what they don’t do, and thus are inclined to err on the side of intervention. Oncologists can make up to half of their income on the drugs they prescribe. In a system rigged this way, with vulnerable patients often facing death and their doctors wanting to help both them and themselves, there’s little reason to withhold new, expensive drugs that may be of marginal effectiveness. So long as insurance is there to pay, what’s to lose by trying them?
I can state with some authority that people facing death have a very different and important perspective on risk. One person’s cost constraint is another’s potentially lifesaving benefit. If there’s a drug yet to be tried that might save someone’s life, but that costs $100k or more, who wants regulations to deny it? But a serious attempt to bend the cost curve in cancer care is urgently needed if we’re to retain a system with any shred of justice and humanity. With current incentives in place, there’s no reason to expect costs to suddenly decelerate.
Because I’m more exposed than most patients to the financial consequences of the decisions made about my cancer care, I’m not inclined to believe that all forms of rationing are inherently evil. I have spoken to my doctors about my concerns over the expense and frequency of my PET/CT scans, about when and how office-based surgeries should be done, and the cost-effectiveness of Yervoy versus IL-2. I want them to know that I need their help in not only living longer but in weighing the economic consequences of doing so. They must not be spared the consequences of their care directives. I believe that medical costs can be better controlled without eviscerating patients’ trust, but that this won’t begin to happen until we admit to the financial toxicity of how cancer care is currently delivered.
I’m not remotely close to the point of needing to put a price on my own life. It’s not clear to me how I would go about doing that if I were to try. What I do know is that if I as a patient can accept the need for limits, then the oncology community at large should as well. For this to happen, we need open dialogue between patients and physicians about the financial burdens associated with cancer care. The illusion that pooled health insurance premiums can and should pay for whatever needs to be done—for those of us lucky enough to have insurance—cannot be sustained. Medicine is not above politics. There are moral and political premises that underlie all clinical decision-making. Medicine’s place in our public life is a cancer and it needs to be treated soon before it kills the patient.