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The high cost of unproven cancer `cures'

Posted: Tuesday, February 22, 2000

This time the insurance company is right.

This time, the folks whose minds are often clouded by dollars are making sense.

And this time, the old familiar scenario - a patient fighting for payment of life-saving therapy against uncaring insurance company - is temporarily turned on its head.

The Aetna insurance company has announced that it will no longer pay breast cancer patients for bone marrow transplants unless the patients are part of a federally funded experiment. Two weeks after the discovery that a South African researcher phonied up research showing that transplants were more effective than the standard treatment, Aetna stopped funding the therapy that has sent 30,000 women into a roller coaster ride of risk and hope, for very little benefit.

The imperative to ``do something'' has again met its match in the medical oath: ``First do no harm.''

For over a decade, the last resort, the go-for-broke treatment for women with metastasized breast cancer has been bone marrow transplant. Patients, often the youngest and most desperate, were blasted with chemo, and then rescued - or not - from the brink of death with bone marrow transplant.

The early research suggested that women who took this chance had a better shot of survival. So many chose a grueling short-term quality of life in hope of quantity of life.

And when insurance companies refused to pay, the patients lobbied. Indeed the politics of breast cancer prevailed even over the reservations of some women's health advocates.

Who wants to say no to a woman, a constituent, who may die because she can't raise the money for a transplant? Who wants that story in the hometown paper? As Cynthia Pearson of the National Women's Health Network remembers ruefully, ``The facts didn't matter any more.''

By the mid-'90s, Congress mandated that insurers pay for bone marrow transplants for federal employees, and a dozen states followed suit. Policy stretched ahead of science - and maybe undermined science. The irony is that while 30,000 women had transplants, only 1,000 signed up for scientific trials that randomly assigned treatment and compared results.

Faced with an agonizing decision, many women hoped for the transplant cure. Faced with an agonized patient, many doctors chose ``to keep hope alive.'' And some facilities, it must be said, found a good deal of profit in this hope.

Gradually, too gradually, science caught up. Last spring, the most extensive research showed no proof that transplants work better than the standard treatment. Only the one South African study offered promise. And that was a fraud.

There are studies in the pipeline that may yet show success, but as Pearson says, ``Women were encouraged to gamble with their lives. We could have known this answer years ago and could have saved women who died from complications if it stayed within the clinical trials.''

The lesson in this tale is a very sober one. Today, cancer is a moving target. There's a conveyor belt of new treatments coming one after the other; there's research tripping on the heels of earlier research.

We seem enticingly near to conquering the disease. Yet to an individual patient, the cure may be just out of reach. At once and the same time, a patient wants access to every treatment and yet wants the research to prove which works. The risk, says Fran Visco of the National Breast Cancer Coalition, is that we can end up ``screaming to get access to something that doesn't work. That's not good advocacy. It's desperation.''

We can't have it all, she adds. ``We can't have access to quality care, ongoing quality research, every treatment we want whether proven to work or not, and keep costs down.''

The insurance companies must continue to pay for clinical trials. But our eyes have to be on the prize; the money and the attention have to be focused on the science, the research that builds toward cure.

Every bone marrow transplant for a breast cancer patient has cost about $100,000. That's $3 billion for what appears to be a failure.

``I keep thinking about the women who have metastatic breast cancer and all the resources we wasted on bone marrow transplants that could have been put to work finding the answer,'' says Visco.

In the end, too many women died while we kept hope alive.

Ellen Goodman is a columnist for the Boston Globe.



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