Dying of lung cancer, Carolyn Hobbs tried a new biotechnology drug that produced an unanticipated side effect: acute sticker shock.
She was waiting for her second treatment in a hospital near Denver less than two years ago, when someone from the business office marched in. Her share, she was told, would cost more than $18,000, since the drug wasn't insured for her type of cancer.
How to decide?
In her six decades, she had shared in a long marriage, raised three children, worked in a nursing home, painted as a hobby -- and wasn't ready to leave it all behind. But she was also a careful spender who sometimes returned new clothes to the store, deciding she didn't really need them.
Maybe this new drug, Erbitux, could extend her life by a small fraction, but she wouldn't be cured. "She was just very frugal, and she said it wasn't worth it," her husband, Larry, remembers.
So she refused the treatment.
More patients are confronting this wrenching decision, as the latest generation of pricier cancer drugs and heart implants stretches out the final months of advanced disease. Is the chance for several more months of life -- maybe a year or more with luck -- precious enough to spend a small fortune? Extraordinary care for dying patients can make for inspiring medicine, but its extraordinary costs make it an increasingly debated choice to promote public health.
"People still have an underlying belief that there's an infinite amount of resources that can be invested in health care," says Dr. Harlan Krumholz, a Yale University heart specialist who studies quality of care. "But I think we're coming to a realization that we're going to need to confront these issues explicitly."
Last fighting chance
Within the last decade, an array of expensive new treatments has given some patients their first real fighting chance against common diseases once routinely called "terminal."
These treatments include biotechnology drugs that home in on cancer and mechanical implants that help the heart pump blood. Some of these therapies, such as the biotech drug Gleevec for leukemia or implanted defibrillators for some heart problems, can work wonders.
The trouble with many treatments, though, is that average patients gain only several more months of life, studies have found. A lucky few may survive for years.
Faced with a lethal disease, more than a third of Americans now would want "everything possible" done to save their lives, up from just over a fifth in 1990, according to a poll by the Pew Research Center for the People and the Press.
"It's better to pay the money than sleeping with the worms," said Jake Rogers, 62, of Chicago, Illinois, referring to his implanted left-ventricular assist device. His doctors implanted a second one in June, when his first wore out after 15 months.
Yet this kind of care costs several times more than the older treatments it supplements or replaces. A mechanical heart pump can cost more than $200,000, with hospital care. A last-resort cancer drug can cost up to $50,000 a year -- if patients survive that long -- but insurance would typically pick up at least two-thirds.
Robert Graham, 73, of East Brandywine, Pennsylvania, just chuckled when he heard the high price -- up to $250,000 -- of heart pumps like the one implanted in him last November. It was covered by insurance.
"I got to live a long time to be worth that!" he said. Yet the average patient in the best medical test so far lived less than nine more months.
Federal safety regulators evaluate only whether drugs or devices work, not how well they work for their prices. And Medicare, which insures about 80 percent of dying Americans, makes no acknowledged evaluation of cost in deciding what to cover. Its coverage umbrella sets a standard for private insurers.
"So far, we've given everything to everybody," says economist Lester Thurow of the Massachusetts Institute of Technology.
Hard choices every day
Yet choices are being made every day, case by case.
Some insurers refuse to cover a treatment. Doctors send patients home to die, sometimes out of mercy. Some patients say enough is enough.
Dr. David Johnson, at Nashville's Vanderbilt-Ingram Cancer Center in Tennessee, pitched Erbitux to his brother-in-law, a 57-year-old married truck driver with advanced colon cancer. However, the drug, has barely been proven to extend average survival at all.
The doctor remembers his brother-in-law refusing and saying: "Are you stupid? I'm not giving up my limited resources."
The drug's marketer, Bristol-Myers Squibb, did not reply to repeated requests for comment.
Employers and insurers are discreetly controlling costs through premiums, deductibles, co-payments, caps, and even outright exclusions. Despite official denials, the federal Medicare program makes subtle cost evaluations, says Dr. William Maisel, a Boston, Massachusetts, heart specialist who chairs a federal committee on cardiac devices.
"I think they are concerned about people using the term 'rationing' or 'withholding therapies,"' says Maisel, at Beth Israel Deaconess Medical Center. One way to control costs, without saying "no," is simply to keep reimbursements low for an expensive treatment.
Private insurers often say yes -- but start with a cheaper drug, get prior authorization, or make a bigger co-payment. The nonprofit Patient Advocate Foundation reports that nearly half of its cases or requests for help involved co-payments last year, up from just 5 percent in 2002.
Or, for the 45 million uninsured, it's, yes, but go to the emergency room and rely on charity for extended care.
"If you've got a thick wallet or a full purse, you can get any care you want. If you don't, there's rationing for you," says former U.S. Health Secretary Joseph Califano.
How much for an extra year?
Many press for more systematic cost controls by insurers, hospitals and policy makers. They say medical guidelines must steer older, sicker patients -- and other inappropriate candidates -- away from the most expensive treatments.
Dr. Barry Straube, who heads the Medicare unit that decides what to cover, believes "it would be helpful in setting priorities when we have limited budgets to look at cost-effectiveness."
One common approach calculates the cost of a treatment for each year of life it saves -- with an adjustment for suffering and side effects. Many health economists view $50,000-to-$100,000 as a reasonable upper limit.
Heart pumps, which were first used as a temporary bridge to a heart transplant and then approved as regular implants in 2003, cost between $500,000 and $1.4 million per year, according to a cost-effectiveness analysis last year. Even one of their pioneers, Dr. Eric Rose at Columbia University, concedes that would make their value "more than challengeable," but he expects improvements.
Or consider the new biotech drug Avastin, which treats colon cancer for about $4,400 a month. Effectiveness? It is proven to extend average life by up to five months. In a survey this year, only one-fourth of 139 cancer doctors felt that represents "good value."
Genentech, which makes Avastin, believes its drug prices provide reasonable value to patients and powerful financial motivation in-house to improve treatments for a terrible disease, says Walter Moore, a company vice president. However, he says Genentech may impose its own lifetime cap on a patient's charges for Avastin.
Many hospitals also partner with drug companies to treat dying patients for free, especially in the early stages of testing.
But even some doctors worry that too many patients merely spend, suffer and die. Doctors, says University of Pennsylvania heart surgeon Dr. Michael Acker, should keep away from "high-tech, expensive technology just to postpone the inevitable."
Carolyn Hobbs was lucky, in a way. She kept a reasonable quality of life, even through most of her final months, her husband says.
Though she initially refused Erbitux because of cost, she ultimately arranged to get that drug and three other biotech drugs for free, with help from her doctor, hospital, Medicare and the drug industry.
She died in November anyway. To this day, her husband isn't quite sure how much was spent.