Waiting to Exhale

Dr. Joel Cooper pioneered lung-volume-reduction surgery to save the lives of thousands of emphysema patients. Now he wants the government to get out of the way.

Jim Farris could walk, but slowly and only if he stopped every few yards to rest. He could breathe, as long as he had a tube up his nose feeding him oxygen 24 hours a day. He could eat, but not too much, because chewing tired him and a full stomach made it hard to inhale. He could talk, but keeping up his part in a conversation took too much effort.

Jim was slowly suffocating and running out of time. Doctors warned him he'd be dead in a few years, but Jim didn't feel like he had much of a life anyway.

"I was like the living dead," he says.

Linda and Jim Farris: When Medicare denied approval for lung-volume-reduction surgery for Jim, the couple was forced to use their savings. "It was either hang it up or cash in the IRA," says Jim. "If I hadn't done it, I wouldn't be alive today."
Jennifer Silverberg
Linda and Jim Farris: When Medicare denied approval for lung-volume-reduction surgery for Jim, the couple was forced to use their savings. "It was either hang it up or cash in the IRA," says Jim. "If I hadn't done it, I wouldn't be alive today."

This was the price of a lifetime of smoking, doctors told him in 1988, when, at the age of 52, he was given a diagnosis of emphysema. At the time, the Overland Park, Kan., resident was making his living selling financial services, not a profession that brings to mind lots of physical exertion. Yet within a year, Jim had to quit working and go on disability. He just couldn't get enough breath for the job.

Emphysema is a progressive disease: It just gets steadily worse and worse, slowly strangling its victims and sapping their ability to fight off other diseases. The weaker Jim became, the more fatalistic his outlook. He even kept up his steady cigarette habit, believing it was too late to undo the damage to his lungs.

But his attitude began to change in November 1995. Jim was in the hospital with pneumonia when his pulmonologist told him he might qualify "for that new surgery." Just weeks earlier, the Health Care Financing Administration (HCFA), the federal agency that administers the massive Medicare program, had begun paying in some states for a new type of surgery called "lung-volume reduction," a procedure that appeared to give breath back to some emphysema sufferers. For Jim, there was one catch -- to qualify for the surgery, a patient had to have been off cigarettes for at least six months. Given reason to hope, Jim says he "got serious" and quit smoking.

Then Medicare did an about-face. In January 1996, just weeks after agreeing to pay for lung-volume-reduction surgeries, Medicare abruptly stopped, saying the procedure was unproven and more research was needed. Many private insurance plans, which had covered the cost of the surgery, followed Medicare's lead and also stopped paying.

In just three months, Medicare had paid more than $35 million for 722 lung-volume-reduction claims -- and the cost was likely to keep growing. Doctors at the respected Mayo Clinic in Rochester, Minn., estimated that if just one-tenth of the nation's 2 million emphysema sufferers got the surgery, the cost would exceed $4.6 billion. Despite a prevailing view in the medical community that lung-volume reduction works, Medicare decided it needed a study, so it launched the National Emphysema Treatment Trial (NETT). But the study appears to have raised more questions about Medicare's motivations than answers about emphysema. NETT has sharply divided leading medical researchers and surgeons over questions of medical ethics, research methods and health-care priorities.

When Medicare stopped funding, there was no controversy, no recrimination, no angry public debate. Jim and his wife, Linda, weren't alarmed. They figured Medicare just wanted to gather additional information and perhaps toughen up its criteria for eligibility. "We expected them to put it in the hands of the medical elite, to say that only hospitals that did lung transplants could do lung-volume reduction because those hospitals would have the staff trained to deal with lung patients," Linda recalls.

Hopeful that Medicare would soon restore funding for the procedure, Linda brought Jim to St. Louis, where he was evaluated by Dr. Joel Cooper, a surgeon at Barnes-Jewish Hospital who had pioneered successful lung-volume- reduction surgery.

But the couple's hope turned to fear as they waited all of 1996 on Medicare and Jim's condition kept deteriorating. And fear turned to desperation as 1997 passed with no decision from Medicare. For Jim, just getting out of bed was a struggle, moving to the couch an exhausting ordeal. "It just took all my energy to breathe -- it was like smothering all the time," he recalls. By Christmas, the couple decided, they couldn't wait any longer.

Linda called Barnes-Jewish, where Jim had been evaluated, to negotiate a deal. The St. Louis hospital agreed to a fixed charge that was about half their normal fee for the surgery. "If they hadn't agreed to a fixed charge," Linda says, "there was no way we could have afforded it, because if there had been any complications, the cost would have bankrupted us." Assured of a maximum price, whatever complications might develop, the Farrises scheduled the surgery.

The couple cashed in Jim's Individual Retirement Account and paid the hospital $28,500. Linda told them "to bill Medicare anyway -- I want to appeal when we get denied."

On May 19, 1998, Cooper cut into Jim's chest, spread open his rib cage and, using a surgical stapler, snipped pieces from each of his lungs. The stapler resembles a pair of scissors with a piece of staple-embedded tape on each blade. As Cooper cut off pieces of diseased lung, the tape and staples closed the cuts like the seal on a Ziploc bag. The operation took about an hour, with most of the time spent carefully sewing the rib cage and chest muscles back in place.

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