Now that healthcare will likely be back on the table, I thought it might be good sport to revive the debate over "death panels." It's a term that upsets some folks, so maybe a different one is in order. How about God Panels? And a question: Will they be comprised primarily of government bureaucrats and journalists?
I say God Panels, the government says "comparative research." Tomayto, tomahto. Whatever term you use, the government is investing millions into what it frames as a wonderful-sounding exercise to find and promote the best possible treatments for the sick. From this, bureaucracies like the Centers for Medicare and Medicaid Service then set rules on who gets access to certain treatments. Private insurance companies usually follow suit.
Unfortunately, "best" treatment is often a euphemism for "cheapest." And if you're one of the poor saps who might require a costly drug to live, you may not be considered a good return on investment by the accountants working for the U.S. government.
I'm one of those poor saps.
Two years ago I was diagnosed with Renal Cell Carcinoma—kidney cancer. It's a rarer form of cancer than breast, lung, or prostate cancer, and it generally gets less attention than those better-known diseases. It is notoriously resistant to chemotherapy and radiation, common treatments for other cancers. Despite this, it gets less funding for research to find new treatments.
Despite being the red-headed step-mutation of the cancer community, kidney cancer research has developed some breakthroughs in the last five years or so. For example Sutent, a kind of wonder drug for kidney patients, has come to market. Prior to this breakthrough there were few options.
Sutent, however, is one of those expensive drugs. In England, kidney cancer patients were long denied access to it. It was too expensive, and it only kept people alive for about eleven months. So why bother? Those of us across the pond watched in horror as kidney cancer patients pleaded to largely uninterested government workers to give them access to the only drug that could offer them hope.
Why does this matter in the United States? We're now seeing these same debates emerge in Washington. There has developed a disturbing pattern of decisions by U.S. government panels to revisit FDA approved drugs to determine if they are "cost effective." (Of course, with a wink and a nod the FDA denies cost is a factor.) Equally disturbing is the pattern of misinformed articles published in the mainstream media about these government decisions.
Provenge and Avastin have been of particular focus of late. The story line in these stories is consistent: In the age of rising healthcare costs, should we reconsider providing cancer patients with "highly expensive" drugs that can only keep the patient alive for a few more months? In other words: Are they worth the money? Bailing out banks is one thing, but do we really want to spend money on finding a cure for cancer?
I'd like clarify some phrases that are frequently used, or misused, by bureaucrats in the government and media alike to justify blocking access to these drugs.
Progression Free Survival. What does it mean? Consider the case of Provenge, a drug for prostate cancer patients that has received enormous publicity after the Medicare bureaucracy recently announced it was reconsidering whether to support the drug. The median progression free survival for the drug, we are told, is only four months. Evidently highway robbery for the $93,000 price tag.
Well, let's put aside the emotional question of whether a life is worth $93,000 and stick to the question of what it means when the federal government announces that a drug offers only a four-month progression free survival.
Evidently if you write for a national newspaper like, say, the Washington Post, this means that the drug allows cancer patients "to eke out only a few more months of life." Luckily for those of us actually living with cancer, there is a big difference between "progression free survival" and dying.
Progression free survival is the period of time where the drug is successful at keeping your cancer from growing (progressing). Contrary to the Post, should the cancer begin progressing again, you do not wink out and whither into a corpse. It means merely that your treatment is no longer working. It means that it's time to try another treatment. It means that—new treatment or not—nobody has any idea how long you will live.
Median: This term often gets confused with average but they are as different as—well, as having access to a potentially life-saving drug and not having access to that drug. Here's a simple way to think about it: In a sample of patients taking Provenge, half of them achieved progression free survival for less than four months. Nobody knows what kind of condition these folks were in when they started taking the drug in the first place, but nonetheless half saw the cancer begin growing again within four months.
And what of the other half? They achieved progression free survival for more than four months. How long? Who knows. It varies wildly. Some people might live for years on Provenge. Others could live indefinitely. As a cancer patient, is it possible to know how long it might work for you? Unfortunately, no. Could a doctor know how long it might work? No. Could a government bureaucrat? Definitely not. A journalist? See above.
Bureaucrats and journalists love statistics. Evidently they don't love Mark Twain, who famously said that there are "lies, damned lies, and statistics." As one of my doctors clarified, medians and survival rates have value only from an aggregated clinical research perspective; they have none for individual patients. Nobody knows how long you will live with cancer, he told me. Nobody yet knows why some people respond to a particular treatment and others don't. Anyone who does claim to know is—well, see Mark Twain. I have met dozens of allegedly doomed kidney cancer patients with metastatic disease who years ago surpassed their median 11-month lease on life, all of them still living healthy lives on Sutent or one of its sister drugs.
And if these people keep on breaking the rules, keep on living despite the death sentences handed them by the God Panels, the troublesome scoundrels may live to see even newer and better treatment breakthroughs. Which won't do at all. What kind of hell would that play on Medicare's medians?
One way to stop such breakthroughs would be for the government to keep shutting down opportunities for researching and developing new treatments. If the Centers for Medicare and Medicaid Service and the Food and Drug Administration and god knows what other panels lurking in the lost crevices of our sprawling government decide to block access to Provenge, if they block Avastin, if they block Sutent, who will spend the billions necessary to research, develop, and bring new drugs to market? The federal government? Sure, as soon as our dear leaders get done paying off their trillion-dollar debt.
In closing I thought I might share a couple more concepts and definitions worth considering:
Hope. Hope is a belief in a positive outcome related to events and circumstances in one's life. For cancer patients, the hope is that they will live beyond the median—which as we know, requires only that you get into the top 50 percent. The hope is that Provenge, Avastin, Sutent or a host of other "high-priced" breakthrough treatments will work for longer than the median—as they have for so many patients.
Fear. Fear is an emotional response to a perceived threat. For example, fear that the God Panels making life-and-death decisions about these drugs don't really know the definition of progression free survival, median, or hope.