Defending my life

"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

I nearly died.

Several times.

That I am alive to write such words—any words—explains my nearly unfathomable loyalty to the women and men of the University of Washington Medical Center's organ transplant program. They saved my life, and have since kept me alive and in (mostly) relatively good health. Their handiwork is close to my heart.

About 10 inches south.

My story is important to me, but it's nearly routine for practitioners of advanced high-tech medicine who perform these procedures that extend lives and often offer a good quality of life to those saved. But: They're frighteningly expensive; they are as seemingly random (in a perverse way) as the death penalty in selecting who gets the chance to live; and they operate independently of the resource needs of simpler, preventive public health programs that, if applied around the world, could save millions of lives each year.

My involvement began just over 10 years ago, when a nephrologist (kidney specialist) with the bedside manner of a gargoyle sat at her desk, eyes fixed absently on some point high on the opposite wall, and casually told me that I was likely to be dead in a year or two or three. This same reputable but inaccessible doctor proceeded to ignore me over the next two years, damn near ensuring the accuracy of her prediction. All the while, my condition steadily worsened, and my insurance company balked over the necessity and expense of a simultaneous transplant of two organs: a kidney and a pancreas. Due to a congressional oddity, Medicare covers kidney transplants, but at the time it wouldn't cover the pancreas—and neither would my insurers, because they considered the procedure "experimental." I needed both organs to live.

In September 1993, I lapsed briefly into a coma and then began dialysis treatments for my failed kidneys. For five hours a day, three days a week, a needle the size of a pencil transported my blood through an artificial kidney machine, filtering out the impurities.

Some people's bodies cope well with dialysis; as with most Type I diabetics, mine did not. I wound up with seven or eight surgeries to repair and/or unclot the artificial blood vessel in my right arm used for the dialysis procedure. After a month, increasingly erratic blood sugars put me in the hospital again. I could no longer work at my part-time job as a community activist. On November 12, I started convulsing while dancing at a party and was out of it again for a couple of days. Two weeks later, my then-wife Kiyoko found me passed out in the shower, and she and a group of friends I will never forget (Vivien, Gavin, Carolyn, Ellen, Scott, Lisa, and Lance, among others) stood watch as I lay in a coma for several days.

Once I emerged from the medication-induced hallucinogenic hell that followed, we changed doctors, and UWMC got serious about taking the only course of action likely to work. With better medical care, my condition was poor but more stable. The insurance company finally, reluctantly, agreed to save my life. In June, I got a pager, for use when compatible organs were found. Every few weeks, someone would call a wrong number, and I'd damn near have a heart attack. Then, on the evening of December 16, 1994, the pager went off for real. In only six months, they'd found a "match," from an 18-year-old man (bless him) killed in an auto accident in Portland. It was four months before my insurance would expire due to Kiyoko's having been laid off. I had just turned 35.

The 10-hour surgery the next morning proved successful. It also represented a lifelong commitment on my behalf by UWMC's doctors. Like the staff at most transplant programs, they don't like to see their patients die after so much time and effort, and so, even though I can't really afford it, they continue to be aggressive in my care. In six years, I've had a stroke, a possible rejection episode, two bouts with double pneumonia, a nasty (and potentially life-threatening) cryptococcal fungal infection, and taken over $100,000 in immunosuppressant drugs. That's pretty good; I know K-P patients who've had a much rougher go. Not everyone lives. For the decade, I've resulted in around a million dollars in health care expenses billed to insurance. I am the insurance industry's worst nightmare. I lived.

By acting to save myself, I took advantage of a global health care system that, in the name of profitability, intentionally fails far more people than it saves. How many more people would now be alive if the million dollars spent on one person—me—had instead been spent on medical vouchers in Lake City? Or vaccines in Chad, or water filters in Tanzania, or a health clinic on a Lakota reservation? Dozens? Hundreds? Thousands? Each year, that question becomes more urgent, as thousands of beneficiaries of new treatments—transplants, protease inhibitors, fancy new tests—not only live when we wouldn't have 20 or even five years ago, but proceed to require expensive health care treatments for as long as we remain alive.

NOT EVERYBODY GETS that chance. Money, of course, matters, beginning with whether someone has enough regular access to health care to have been diagnosed in time for procedures like mine to work. It also takes a certain kind of assertiveness to navigate the byzantine, often dehumanizing world of specialized health care.

From the doctors' side, whether someone can take advantage of high-end medicine depends on a number of factors. Dr. Christopher Marsh, associate director of UWMC's Division of Transplantation, ticks off the eligibility requirements for a liver, kidney, or pancreas transplant: "Getting referred by primary care; being medically suitable—that is, being compliant, not having severe co-morbid conditions; having psychosocial support; not having mental illness—though it doesn't preclude you if you're under control. We look at a patient's financial status, but in actuality we can get through the transplant and surgery [financially]." Marsh says that insurance companies and HMOs can be more of a financial barrier than the hospital: "They can be a substantial gatekeeper and not refer patients, or refer them too late, or send them to a center that is cheaper but doesn't give the best results, or not refer them back to long-term care."

Candidates must be clean of substance abuse, a particular issue for liver patients who've destroyed their health through years of alcohol abuse; at UWMC, says one administrator, "If there's any kind of substance abuse, they have to go through a formal rehab program. The patient can't just say, well, I quit . . . you have to look at it as giving people a chance." And then matching organs have to be found. According to Marsh, the average wait time is now two years for a pancreas or liver.

In 1994, I met all the medical conditions, and my organs showed up in six months. Were I in the same situation now, I would wait much longer for matching organs, which is a severe medical risk, but insurance coverage would not be as critical of an issue. Medicare covers all treatment of kidney disease—including, as of about three years ago, the costs of kidney-pancreas transplants as well.

Our national health care system is a pyramid of such legislative flukes. Dr. Christopher Blagg, director emeritus of the Northwest Kidney Foundation, the area's oldest and largest dialysis provider, says that over 30 years ago, "The Senate decided, over a weekend almost, to fund dialysis treatment . . . they honestly didn't know what it was going to cost." Kidney transplants were subsequently covered, and when joint kidney-pancreas transplants came along, it was discovered that they, too, were cheaper than a lifetime of dialysis.

Dr. Kim Muczynski, my current nephrologist and the director of UWMC's renal clinic, says that 11 of Washington state's insurers now enforce a one-year wait for kidney and kidney-pancreas transplants. The hope is that patients will be forced on to dialysis, in which case Medicare, rather than the insurance company, picks up the cost of the transplant.

The dilemma I faced over coverage for a new, or even relatively new, procedure is common. Hugh Straley, an oncologist who is Group Health Cooperative's associate medical director, helps decide whether Group Health will pay for an experimental procedure. "In most cases," Straley says, "most insurers do not cover experimental treatment."

"We're looking for the grade of evidence: high grade (rigorous randomized controlled trial), or low grade (description of small group of patients), or clinical opinion. What we are really looking for is high-grade evidence. That doesn't mean that there isn't benefit otherwise, just that there isn't evidence; we might approve it anyway. [We also assess the] impact on the system, the cost to the system, and community standards; we seek input from relevant specialists as well. In most cases, the decisions are relatively easy to make. In other cases, the decisions are much more difficult. The evidence is marginal; the benefits are marginal. We really have to weigh whether this is an appropriate benefit for a small group of people. If the evidence is that it is life-saving, we'll cover it."

However, the evidence—and the definition of "life-saving"—is in the eye of the beholder. A terminally ill patient is likely to want alternatives, regardless of the rigorousness of the evidence. And so, three years ago, Straley and Group Health found themselves in the middle of a conflict. Teri Lafnitzegger, a 37-year-old Kitsap County housewife suffering from an aggressive, deadly brain tumor, wanted to go to North Carolina to try an experimental therapy offered at Duke University.

Group Health Cooperative physicians gave her a few months to live and would not pay for her care at Duke. Media coverage and a firestorm of public sympathy helped convince Group Health to relent. At an emotional public forum in February 1999, in which Lafnitzegger confronted Straley and Group Health officials, she pointed to her presence at the forum as evidence that the therapy worked and was worth paying for.

Seven months later, Teri passed away. She got to see her youngest child enter kindergarten. Both she and her husband, Eric, thought the Duke therapy gave her several extra months of life. Today, Eric still thinks the Duke treatment was the right thing to do.

And Straley has doubts. He says that the procedure they tried "still hasn't panned out. It's still of marginal value. . . . From her and her family's point of view, it's worth it . . . but for a hundred patients with brain tumors who have a shortened life expectancy, is it worth it to spend $50,000-$100,000 for each patient to get one or several months [of additional] survival for a small percentage of them? That is one of the most difficult things we can do. We generally say that it's not, that the scarce resource can be better applied to the larger population."

While insurance companies, in denying high-cost treatments, can claim that they are trying to ensure lower-cost health care reimbursement for more people, the big transnational corporations that dominate the pharmaceutical industry have no such excuses. Drugs like cyclosporin are lifesavers; the greed of their manufacturers can be a major barrier to equitable health care. For someone in the U.S., it's a struggle; for someone in the Third World with AIDS, cancer, or a transplant, it's a death sentence. It's been well publicized, for example, that some of these companies have fought mightily—with U.S. government support—to prevent inexpensive generic anti-AIDS drugs from being distributed in the Third World.

But all forms of health care are maldistributed. Muczynski notes that kidney transplants—common for decades in this country—are performed in the Third World only with a living donor, and patients suffering from kidney failure aren't given dialysis unless a transplant is lined up. For patients who can afford it, however, Third World transplants are actually much cheaper. Muczynski knows of a Filipino patient who went back to his country and, for $5,000, had a kidney transplant that would have cost him $33,000 here. The U.S., of course, has better care and monitoring, but of the enormous price gap, she shrugs, "It's just the way we do things." In fact, doctors and hospitals lose money on some types of transplants; the problem lies with the stunning variety of expenses we build in.

Profit is one of those expenses, and at times the impact is immediate. Last winter, the U.S. suffered a shortage of flu vaccines, in large part because a manufacturer chose to redirect two of its factories to produce a more profitable drug. According to one industry observer who didn't want to be named, "Obscene drug company profits cost lives [in the U.S.]. If there's a 10 percent margin for a heart attack drug instead of 50 percent, it won't be made. A couple of companies have stopped making flu vaccine. Others aren't making enough, because their factories switched over to more profitable drugs. Factories making these basic drugs are now making Viagra instead."

The biggest financial problem, for me and for most transplant patients, comes well after the surgery. Jeff Harder, a UWMC social worker who helps patients find financial resources, says, "In eight years I don't remember ever turning down a patient for the transplant itself [because of finances], but there's a big variety in how insurance companies cover prescription drugs." Medicare covers prescription drug costs for only three years post-transplant; after that, most of us are on our own, no matter how disabled.

Six years out from my successful transplants, I go through 42 pills, two oral solutions, and two patches every day. That includes the immunosuppressant drugs that, by preventing organ rejection, keep me alive. Every transplant patient, everywhere in the world, takes these drugs for the rest of their lives. Cyclosporin, which revolutionized transplant surgery in 1984, isn't costly to make and long ago repaid its developmental and marketing costs. Yet because one company holds the international patent, the manufacturer is able to gouge. I'm billed $1,037.73 a month for the form of cyclosporin I take. For me, it means that I'm kept alive by my access to insurance, because uninsured, my drug bill is more than my monthly income. And insurance companies, in Washington state, are desperate to jettison the chronically ill, a right which the state legislature gave them last year. Neither the state nor federal programs like Medicare have comprehensive strategies for addressing the health care costs of the growing population of chronically ill.

As governments cut spending not directly related to making business happy, public health provisions for things like food and water safety lose funding ground. Debbie Ward, a former board chair of Group Health also involved in the Lafnitzegger case, points out, "The things that make the biggest difference to the public's health aren't individual services. They're public health [services] like water safety. Of the things that make a huge difference to public health, first we have these deeply undervalued public health issues. [Then], well, it probably turns out to be things like income, and job safety, and neighborhood safety. . . . The disproportionate amount of money that's spent on . . . surgical interventions that make small differences, medical interventions that make small differences, aren't as important as these things."

My case exemplifies the point about public health. My kidney disease was a complication of Type I diabetes—which came from pancreatic failure that occurred when I contracted a viral infection from bad drinking water. If the drinking water in Eastland, Texas, hadn't been infected one day in August 1977, I probably wouldn't have racked up a million dollars in health care costs in the 1990s.

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."

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

 
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