On Oct. 1, cash-strapped Arizona ended state-financed payments for certain organ transplants. The decision, as the New York Times put it last week, “amounts to a death sentence for some patients.”
Francisco Felix might be one of them. The 32-year-old truck driver with four children will die without a new liver. According to the Times story, doctors at Banner Good Samaritan Medical Center had a matched liver for Felix several weeks ago and were ready to proceed. News of the budget cuts forced them to scrap the surgery.
Graciously, Arizona has allowed Felix to stay on the waiting list, but if another suitable organ is found, he must somehow raise the hundreds of thousands of dollars to pay for the procedure or pray that some billionaire like, say, Steve Jobs comes along to help.
I mention Jobs because the Apple CEO had his own encounter with transplantation in 2009, when he received a new liver. His story became a parable of class privilege and the inequities of the nation’s transplant system. Jobs relocated from his home in California to Tennessee, where there is much less competition for vital organs.
It’s perfectly legal to use one’s wealth to improve the odds of getting transplanted—and thousands of other Americans who are waiting for life-saving livers, kidneys, or lungs would do the same. But unlike Jobs, few patients can afford to move to another state to improve their chances. Nor can they afford to register (again legally) at multiple transplant centers—each charging a fee of about $600—and then visit each one for preliminary tests before jetting, at a moment’s notice, to the first one at which an organ becomes available.
Economic rationing of transplants occurs in other ways, too. Hospitals routinely reject candidates for new organs or bone marrow if they have no insurance or if their coverage will not guarantee payment for the anti-rejection medications that a patient must take for the rest of his life.
Jobs didn’t have to worry about medical coverage for the procedure the way Francisco Felix must. Rather, his obstacle was the long-standing and worsening organ shortage. This state of affairs makes transplantation the most overtly rationed procedure in American medicine. There is a list, you know whether you are on that list, and you have some rough idea of your place in the queue. Seventeen people die every day because they could not survive the wait for a kidney, liver, heart, or lungs.
The Arizona law purports to be a different sort of rationing—one based on prognosis, rather than the availability of organs. According to Gov. Jan Brewer, liver transplants are inessential. “The state only has so much money, and we can only provide so many optional kinds of care,” she told the Associated Press last month. “And those were one of the options that we had taken the liberty to discard, to dismiss.” State Medicaid officials, the Times reported, said they recommended discontinuing some transplants only after assessing the success rates for previous patients. (I assume this is what Gov. Brewer meant when she used the unfortunate word optional.)
In certain instances, this sort of reasoning makes sense. Given limited resources—of organs as well as money—there’s no logic in encouraging procedures with minimal or mitigated effects. For example, why give a precious liver to someone who won’t quit heavy drinking or to a homeless individual whose circumstances make him unlikely to follow the anti-rejection regimen? And what about age? Arguably, a quality kidney from a young donor should go to a 40-year-old whose life would be prolonged by decades rather than a 70-year-old who would probably die with unused miles on his transplant.
But state politicians got bad medical advice. Liver transplantation is far from “optional”; it’s the standard of care for cirrhosis caused by hepatitis C.
What’s more, the procedure often prolongs productive life by many years. Although most patients can expect their new liver to be reinfected with the hep C virus, which is still in their bodies, two-thirds enjoy up to a decade or more of life. The vast improvement in health enables many leave the Medicaid disability rolls and become taxpayers. As for saving money by denying liver transplants, even this is not a sure thing, as end-of-life care for many patients with liver failure (that is, those who did not get a new organ in time) is likely to equal or exceed the $200,000 that Francisco Felix was told to come up with.
The Arizona decision is doubly wrong, technically and morally. To regard transplantation as “optional” is a grievous medical error. When suitable patients receive organs, they can live meaningful and longer lives as parents, spouses, neighbors, and workers. Morally, it is troubling enough to deny life-saving treatment by never guaranteeing it in the first place; it is even worse to pull the plug on people’s hope—and, with it, their lives. At the very least, the state should have grandfathered in those already assured of coverage. Then, going forward, in refusing to transplant those who could not afford it, Arizona would be making more explicit the economic rationing that already exists.
Uneasy questions of apportioning arise in environments of scarcity. Who will stay in the crowded lifeboat and who will be thrown to the sharks? This age-old tension between utility to society (the maximum good for the maximum number) and fairness to the individual is a crucible for American medicine. David C. Cronin, director of the Liver Transplantation at Children’s Hospital of Wisconsin, sees Arizona’s effort as a “dress rehearsal” for future cutbacks in a healthcare system where the government is poised to expand its role as insurer. “For a state agency to deny and even revoke approval for an accepted standard of care is new territory,” he says.
I see a more immediate lesson, relating to what sociologists and economists call the problem of “identified lives.” Flesh-and-blood people—Uncle Bernie with cancer rather than all people with cancer—elicit empathy and feelings of duty. Bioethicist Al Jonsen coined the term “Rule of Rescue” for the powerful human imperative to save a single endangered life, regardless of cost, over nameless throngs who may be in similar peril.
In the end, Arizona attempted to save money by curtailing expensive procedures that were believed to be relatively ineffective. From the standpoint of hard choices and cold calculation, this principle is defensible. But there is little reason to believe that Arizona undertook the time-consuming and painstaking data collection and cost-benefit analyses that should inform such policy change. Instead, it clumsily targeted a discrete group of people with names and faces who will die without a standard procedure that is proven to be successful in so many cases.
Thus public outcry over Arizona’s blunder will, I suspect, lead the state legislature to reverse the cuts when it meets in January. As Francisco Felix’s wife told the Times, “You can’t cut human lives. … You just can’t do that.”