"So now I'm told that while my illness was recently described as terminal, I can, perhaps, be saved. . . . I'm left with one of those too-simple questions: How much is the extension of a life worth? The answer, we learn from childhood: It depends. It depends on who I am. It depends on the accidental geography of my birth. It depends on how much wealth I have accumulated, how many friends I have, who they are. It depends a lot on dumb luck. . . ."
—"On Being Terminally Ill," from Typing Love Letters to Create Time, a book I self-published in April 1991
One of the more benevolent reasons insurance companies have been reluctant to pay for high-cost treatments, beyond the cost itself, is that it saves more lives to spend the same amount of money on preventive procedures instead. Preventive medicine has historically suffered in America because it's not as profitable in the short term as expensive specialties and high-tech responses to acute illness. Slowly, that's changing; "wellness" as a term didn't exist 20 years ago. Now insurance companies and HMOs emphasize prevention.
Muczynski is optimistic on this front: "We are thinking now about how to prevent original disease. As transplants are evolving, so are newer therapies and measures to promote awareness early on." Straley concurs: "Primary prevention has always been seen just in terms of public health, [but] now we're looking at moving to other means of extending life—management of risk factors such as smoking, moderation of alcohol use, exercise, management of nutrition. These interventions translate into longer and better lives."
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But the money-driven commitment to wellness has a nasty edge. Illness is expensive. Insurance companies and HMOs prefer "well" patients. And they prefer them to the point where the chronically ill cannot afford, or even obtain, insurance or adequate health care. As baby boomers age, cancer rates soar, and the number of uninsured Americans approaches 50 million, that gatekeeping has become a major crisis. Access to fancy treatments is only a small part of the problem. Straley sees the crisis coming: "When there are 45 million people not getting primary care, that's not a wise public health investment for the U.S. to make."
FOR ME, HIGH-TECH MEDICINE has had a wonderful payoff. Not only have I had precious extra years with family and friends, but I'm still alive to agitate for more humane political policies and to make Mark Sidran and Paul Schell's lives less comfortable. That, surely, is worth a large public investment.
But what about the liver transplantee who reverts to alcohol abuse? Should his life not have been saved? What about people like Teri Lafnitzegger, who despite a brave and spirited battle, only got an extra six months? Should we all have been passed over in favor of a more equitable allocation of health resources? How many families of people who died at least in part because of inadequate access to basic health care could trade places with my family?
In 10 years of navigating Seattle's health care facilities, I have met countless health care providers who are agonized because they can't practice medicine appropriately and their patients suffer or even die. The American system is the most technologically advanced, but also by far the most expensive, one of the least efficient, and one of the most economically segregated in the world. Under our current public policies, there's not enough money available to save the lives of everyone whose life could be extended or saved—even in the wealthy U.S., let alone the rest of the world.
Usually, the choices are not dramatic, and happen over years on the basis of geography and class and lifestyle and quirks like the federal support for kidney patients. But sometimes, the decision-makers have names and desks. Doctors, hospitals, HMOs, drug companies, and especially insurance companies trade in these questions every day. Absent any focused public policy, they're making the calls. Increasingly, in a for-profit health care system, money is driving the decisions.
My original insurance company stalled for three years, claiming that a kidney-pancreas procedure was experimental. Their recalcitrance, while I went through successive comas, nearly killed me. Had I died, they would have saved a lot of money. Had I been wealthy enough to pay for the procedure myself, my life would not have been so endangered.
I'm still not wealthy. It's been nearly a decade since I last worked full time, and while I'm ecstatic to be alive, some days are a lot worse than others. I'm currently self-employed and pay out of my paltry income for my own individual insurance, with additional out-of-pocket medical expenses that leave me with very little to live on and no savings. According to Dr. Muczynski and others, my six-year-old non-native organs have a finite life span of—under good conditions—roughly 10 years (pancreas) and 15-20 (kidneys). If they're right, in a few short years I'll be battling the same complications and downward spiral that led to my grave illness and original transplants.
At that point, absent my winning the Lotto, my life will again be in the hands of gatekeepers. This time, they won't be concerned about whether the treatment works—it's now well established—but they might be looking at new "experimental" treatments or drugs. If not, they'll wonder whether a second round of transplantation, in a world of scarce organs, should take priority over someone who needs it for the first time. And they'll especially worry about money, and the fact that I've already consumed so much of it.
That, really, is the basic question: Do we, as a society, value the right to make more money over the lives of our neighbors? In the wealthiest society in the history of the world, amidst tax cuts for the wealthy and gazillion-dollar weapon boondoggles, how many lives could we save? Which ones? Do I have a right to demand more? Do I have a right to live?
I think I do. But it's not my decision.
gparrish@seattleweekly.com
