SHARYL ATTKISSON: Every day, you breathe more than 30,000 times. Now imagine doing that with a pillow over your face. That's what it feels like for people with emphysema. Medication and oxygen therapy can make things a little easier, but the outlook is still grim for many. Now, some doctors are convinced a radical type of lung surgery may help. Our Andrew Holtz looks at the controversy over who should get the operation and who should pay for it.
ANDREW HOLTZ: Every week Jim Farris spends time cleaning up his church near Kansas City, Missouri. He's a man of faith, but two years ago, that faith was put to the test. Emphysema was choking off his breath.
JIM FARRIS: So I had a 50-50 chance of living three years, if I didn't do something.
ANDREW HOLTZ: Patients say emphysema is like taking a deep breath and then not being able to let it out. The disease destroys small airways and robs the tissues' elasticity. Normal activities become difficult if not impossible.
JIM FARRIS: It went from me being able to do a little, a few things, to not being able to do anything.
ANDREW HOLTZ: The usual treatments are medicine to expand the airways and exercise to help the body use each breath more efficiently. But they are not cures and patients continue to get worse Jim's doctor, Joel Cooper, thinks there's a better option. A radical operation that involves removing sections of diseased lung.
JOEL COOPER, MD, WASHINGTON UNIV. SCHOOL OF MEDICINE: It really is downsizing the lung, cutting out overblown, overexpanded, badly destroyed portions.
ANDREW HOLTZ: Cooper says 85 percent of his patients breath easier after surgery. The operation is expensive, about $30,000. It can also be risky. At least five percent of patients die of complications from the operation. Just one reason that in 1995 Medicare stopped paying for it.
JEFFREY KANG, MD, HEALTH CARE FINANCING ADMINISTRATION: When we reviewed the scientific evidence, we could not determine whether the benefits of the surgery outweighed the risks.
ANDREW HOLTZ: Then two years later, Medicare reversed course and agreed to cover it, on one condition. Patients have to enroll in a National Institutes of Health study in which half the patients are randomly assigned to get the surgery. The other half receive the usual therapy. That way, researchers can compare the results of the two groups to see if the procedure really helps.
Jim Farris didn't want to take a chance of not getting the surgery so he dipped into his retirement savings and paid Dr. Cooper to perform the operation at Barnes Jewish Hospital in St. Louis.
JIM FARRIS: When we came in, we wrote a check to Barnes for $28,500.
ANDREW HOLTZ: He says the money bought his life back.
JIM FARRIS: I could barely walk across my yard with oxygen on, and now I'm raking my yard, so is that a second chance? You bet.
ANDREW HOLTZ: It's a conflict that often arises in medicine: the patient's desire for a potentially lifesaving treatment versus science's need to test it first. But the twist here is money - whether Medicare should refuse to pay for those who won't participate in the study.
JOEL COOPER, MD: In my opinion, the trial, as currently being conducted by the NIH and Medicare, is not an ethical trial.
ANDREW HOLTZ: Dr. Cooper says the study should give eligible patients standard therapy first, see how they do, then give them all surgery.
JOEL COOPER, MD: And compare the results after the operation with the results before it.
ANDREW HOLTZ: But surgeon Mark Krasna, who's one of the doctors conducting the study, says withholding surgery from some patients is scientifically necessary.
MARK KRASNA, MD, UNIV. OF MARYLAND MEDICAL CENTER: Until we can discern how to better predict which patients will get the good outcomes, it is ethical to do this. Because right now what would be happening is we would only be assuring patients of a benefit that we really couldn't promise every one of them.
ANDREW HOLTZ: Doris Harris is one of his patients. She signed up for the study and was selected for surgery. Now she helps the researchers by going in for check-ups and filling out questionnaires, not only about her breathing, but her day-to-day life.
MARK KRASNA, MD: If we could find out from patients that their overall quality of life is significantly improved, but that that improvement is only short-lived, then you really have to question whether this is going to be valued.
ANDREW HOLTZ: Doris says the surgery has helped her and she feels blessed she was chosen to get it.
DORIS HARRIS: It never occurred to me that I wouldn't be picked. I think I would have been very unhappy if I wasn't, but I went into it thinking I'm gonna be picked.
ANDREW HOLTZ: And some fear that patients who aren't picked might drop out of the study and pay to get surgery elsewhere. The researchers say so far that hasn't happened much but they have had trouble signing patients up. Patients like Jim Farris, who says he's glad he had the $30,000 to pay for his surgery. But he thinks it's wrong for those who don't have the money to be forced to take a 50-50 chance with the study.
JIM HARRIS: What I'd like to see happen is Medicare open it up all the way and the people who qualify for it get the surgery. That's the fair thing to do.
SHARYL ATTKISSON: The lung surgery trial is being done at 19 medical centers nationwide. To be eligible patients must have severe emphysema that's disabling. They need to have stopped smoking or be willing to quit. Also, they must be covered by Medicare or another health plan that is willing to pay for testing and treatment. If patients are on a waiting list for a lung transplant, they can stay on the list while they take part in the study. For more information about the study, you can visit our Web site. We'll give you that address at the end of the program.
Info on National Emphysema Treatment Trial (NETT)
Info about Dr. Joel Cooper an Washington Univ. School of Medicine
Info on Emphysema treatments available at the Univ. of Maryland
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