There's been a great deal of talk lately about the price of cancer drugs: op-eds and articles in the New York Times, a slew of interviews of prominent oncologists in every imaginable media outlet, and impassioned editorials in leading medical journals.
The sense many of us (myself included) have is that the current system of drug pricing is ultimately unsustainable. How many $10,000-a-month drugs can a health care system sustain before collapsing? We'll discover the answer in the near future. The prices are already well above what resides in the average uninsured American's bank account.
Outside health care, the introduction of a me-too product (a new smartphone or computer tablet) results in a significant reduction in price, a race to the bottom. In PharmaLand, though, a new imatinib clone for CML results in an increase in price that far outstrips added benefit, accompanied by price increases for older drugs. Drug costs seem effectively outside the modern capitalist economy.
The economics of drug development and pricing are complex, and I do not claim to understand it, though I have tried. Bottom line: prices for on-patent drugs always increase.
One of my favorite Tolstoy stories is the wonderful “How Much Land Does a Man Need?” The protagonist, the landowner Pahom, is never satisfied with the amount of land he owns. He moves from place to place in his pursuit of more farmland, finally leaving the settled areas for the wild places at the edge of the Tsarist Empire. There he meets a tribal chieftain who tells him that, for a thousand rubles, he can have as much land as he can circumnavigate on foot in a day.
After walking all day he sees the sun setting, and races back to where he began his walk, only to collapse and die at the finish line. The story ends: “His servant picked up the spade and dug a grave long enough for Pahom to lie in, and buried him in it. Six feet from his head to his heels was all he needed.”
Indeed. Is the pharmaceutical industry racing, Pahom-like, to an early grave, in its pursuit of wealth and new compounds? And how much “land” does it really need to innovate, to create the next generation of drugs, while satisfying its stockholders? Again, I don't claim to know the answers. I only know that this can't go on forever.
In Tolstoy's Russia a man's worth was based on the amount of land he owned. Today wealth has a different measure, something incomprehensible to our forbearers: insubstantial collections of photons hiding out in distant server farms, mirages we have collectively agreed to call “money.”
And that wealth, in turn, is capable of buying life, at least in small increments. Debates over drug costs are interesting because they revolve around value judgments. Consider this thought experiment: imagine someone hands you a glass of water and says, “This will cost you a dollar, has no side effects, will palliate your disease-related symptoms, and will prolong your life by 12 days” (the EGFR/pancreatic cancer scenario). Pretty much everyone would drink deeply. We value life when the price is low.
But the other knock on our new drugs is that while we pay an immense amount, we often get little in return other than side effects. EGFR inhibition for pancreatic cancer, with its 12 added days of life, is free neither of cost nor of toxicity. The old Woody Allen joke applies: two old ladies are talking about a restaurant they've just eaten at. The first woman says, “The food, the food was so awful.” Yes,” says the second woman, “and the portions, the portions were so small.”
And the further one gets away from the magical “glass of water” scenario, the fewer willing to drink the Kool-Aid. Where one draws the line is always a value judgment. Always. And it leads to the bitterest of arguments: remember “Death Panels” in the run-up to the Affordable Care Act? We are, as a society, deeply uncomfortable with telling taxpayers that their lives lack infinite value.
Cost, life added, toxicity. The health outcomes folks have wrestled with these three for years, with their Cost per Quality-Adjusted Life Years (or QUALYs, as they are know in the biz). QUALYs are an attempt to provide some quantification to an inherently unquantifiable ethical quandary. $50,000 per QUALY? $75,000? $100,000? $250,000? Are our QUALYs inflation-adjusted?
The Cost per QUALY equation basically asks us “How much is a life worth?” Patients, of course, are also interested in the related question, one little studied by health economists: “How much is my life worth living?”
My patients have given me many different answers to that question. Some are serene about the length (and end) of life, others terrified by onrushing oblivion, and some concerned about the fallout their passing will create. Sometimes their feelings overlap with religious beliefs, sometimes with age, sometimes with perceived responsibility. I've been a doctor long enough not to generalize about how patients answer the question, or even about whether there is a right answer. Three brief vignettes will suffice:
1. An elderly breast cancer patient had indolent metastatic breast cancer, which routinely shrunk with endocrine therapy whenever I could convince her to take it. But she was sad—sad because most everyone she had cared about was dead, and her children were neglectful and far away, so she took the pills only irregularly. One day, as she left the clinic, I said “See you in three months.” With a withering look directed at me, she said, “God, I hope not.”
2. A woman in her 40s found that her husband was sexually abusing her son. She couldn't convince the authorities to prosecute; not enough evidence to convict. She didn't want to expose her child to the vagaries of the legal system, so she cut a deal with the monster, divorced, and got sole custody. She came down with a nasty, ugly, estrogen receptor negative breast cancer. It was the late 1980s, and I didn't have much to offer her, but she would do anything to add even a day of life, so I beat her up with toxic and ineffective regimens. She looked exhausted the last time I saw her, but was horrified when I told her I had nothing else to offer. She wasn't afraid of dying. She was terrified that at her passing her child would fall, once again, into the evil hands of her ex. I don't have a clue what happened to that child: I still think about him from time to time.
3. An old West Texas small-town city councilman developed non-small cell lung cancer and came to the VA for care. I was a brand-new oncology fellow, and I offered him on an investigational chemotherapy trial. His tumor responded, quite nicely, for six months or so, but eventually progressed. Back then, like many novice physicians, I felt heroic when my drugs worked, and a failure when they didn't. I apologized profusely for the progressive disease we saw on his chest x-ray.
He waved my explanations off: he was one of those stoics the high plains produce in quantity, and uninterested in my apologies. In fact, he ended up consoling me. “Let me tell you something, Dr. Sledge, about those six months you gave me. In my town there's a poor section [he didn't say it, but it was understood that he was talking about the Mexican-American barrio] that didn't have running water. No one gave a damn. I always felt bad about that, but I went along with the rest for years. I knew I didn't have much time left, so I rammed a water bill through the city council. Those folks will have running water after I'm gone.” He didn't smile at all when he said this, but had a look of grim satisfaction on his face, the sort one see when someone has righted a deep and longstanding wrong.
We must base public policy on health economics, not on anecdotes, of course. The drugs are obscenely expensive, they don't do enough, and they often harm quality of life at the end of life. They are used long past any reasonable chance of benefit. Resources are limited, and the decision to use expensive and often ineffectual drugs draws money away from other valid social and personal goals (spend all your money on co-pays for the latest RTKi, and forget sending Johnny to college next year: you're broke). Drug pricing also distorts oncology practice, a practice bathed in perverse incentives.
Yet “how much is a life worth?” the Cost/QUALY equation, still leaves me a bit queasy. Queasy, because I don't have a good answer to the question “how much is a life worth?” and because my patients have so many, and equally valid, answers to the question “how much is my life worth living?”
Will a person's worth ultimately be based on the amount of life he can afford? A fascinating new book (The Book of Immortality, by Adam Gollner) describes how a group of billionaires are funding anti-aging research. We oncologists squabble over the meaning and cost of a few months of life, often earned with appalling toxicity. But these guys don't care about cost (the server farms are full of their ghostly wealth-photons), nor do they care about a few crappy months: they are shooting for immortality, or something like it. The Big Time, literally.
The book mentions Larry Ellison of Oracle, one of our richest software moguls, whose biographer says that he sees death as “just another kind of corporate opponent he can outfox.” Not for Ellison the Bill Gates approach to philanthropy, buying mosquito netting and creating vaccines to prevent the deaths of real people in Sub-Saharan Africa. His Ellison Medical Foundation gives out more than $40 million per year for research dedicated to ending mortality, by “understanding lifespan development processes and age-related diseases and disabilities.” OK?
If a drug tripled or quadrupled the normal human life span (forget immortality: there are just too many asteroids, lightning strikes, paranoids with assault rifles and drunk divers out there) what would you pay for it? A lot, I suspect. Who would be allowed to use it? My bet would be on the billionaires, and the devil take the hindmost.
Science fiction is chock full of stories exploring this theme, but popular culture has a word for wealthy immortals who care nothing for those lesser beings they control even as they feed off them. They are called vampires.
More from George Sledge on His OT Blog!
Read and comment at http://bit.ly/OT-Sledge