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Mammogram advice accurate but not ‘right’

Did you hear an enormous thud around 3 p.m. yesterday? That was the sound of Secretary of Health and Human Services Kathleen Sebelius throwing her scientists under a bus.

Earlier this week, the U.S. Preventive Services Task Force, the government's major medical advisory panel, announced that they could no longer support routine mammographies for women under the age of 50 who were not in a high risk group for breast cancer.

They said that the number of cancer cases detected from such screening was too low, and that too many biopsies and further tests were being done in women who had hard-to-interpret test results but who turned out not to have the disease.

This new recommendation unleashed a tsunami of criticism from many breast cancer doctors, patient advocacy groups and women. In an poll, more than 80 percent of women said they were going to ignore the advice.

Emotional, snide — and even paranoid — accusations plagued the recommendation to end routine mammograms for women under 50. Some wondered why there were no true breast cancer experts on the panel. Still others suggested that the whole report was written with an eye toward the billions of dollars being spent on screening every year. And a few even wondered that if this was about men's health, rather than women's, would these scientists have been so quick to yank the plug on a screening test?

Critics of health reform sneered that this is what Obama has in mind for all of us if the government gets its cheap hands on health care — cutbacks in crucial medical benefits now enjoyed by those with private insurance.

By Wednesday, Sebelius cried uncle, bulldozed over the task force and told women under 50 to forget the new advice, keep doing what they had been doing and talk with their doctors about screening.

So how did the poor scientists of the U.S. Preventive Services Task Force go from being the "gold standard" for deciding what works in medical screening (this is according to the Web site of Sebelius' own agency!) on Monday, to a bunch of irrelevant nerds by Wednesday? 

That's because data and evidence have not, do not and never will be the sole determinants of health coverage.

Data-driven health care

The mission of this task force is is to evaluate the benefits of preventive services based only on data in the peer-reviewed literature and input from experts at other federal agencies like the Centers for Disease Control and Prevention, the National Institutes of Health, Veterans Affairs and other professional medical groups.

They are instructed to make their recommendations about the value of screening tests, such as mammograms, with little attention to the economic cost to society.

The critics were right about one thing: It is true that the committee recommendations are the sort of thing the Obama administration has in mind as part of health reform. But not as a way to ration care for the insured. The administration has been talking endlessly about using better data to figure out what works and what to pay for. 

In this case, the task force found that screening all women in their 40s led to too many false positives and too much unnecessary follow-up testing for the number of lives it saved. They did not say that no lives were being saved. They said not as many as everyone thought. And not enough to justify asking every woman under 50 to get a mammogram every year.

Well, women fear breast cancer. So do their husbands, brothers, sons and fathers. There is no way testing for an especially dread disease that is at least somewhat effective is going to be cut back without screaming protests.

What's accurate vs. what's right

The data does not tell us what to do in setting a standard for testing or paying for it — ever.  We have to base these kinds of decisions on both data and values. How much do we fear getting a disease? How much are women willing to go through to avoid getting it? How much do we value saving younger lives and those of mothers of young children? These are as much ethics and policy question as they are issues of the facts.

Equally important, once a practice is firmly in place, such as screening for breast cancer, it is very hard to change beliefs and deeply held convictions overnight. If you tell women to get tested early and often for the better part of two decades, if you tout early detection as one of the triumphs of the "war on cancer" and if you stick breast self-examination cards into every shower stall in America then one day say, er, nevermind, forget it — don't expect that to go down very well.

Screening is what responsible and health-conscious women do to take control of their bodies and prevent disease. Those are commendable and powerful virtues, and — it seems —more compelling than a pile of bland data.

Doing the right thing and taking the time to protect yourself against breast cancer has moral weight that policy makers, as Secretary Sebelius found out, ignore at their peril.

There is no reason to doubt the accuracy of the scientists' finding that evidence does not support routine mammography for most women under 50. But there is every reason to doubt that the numbers they compiled will be sufficient to overturn a medical practice that carries so much ethical weight for women.

Arthur Caplan is director of the Center for Bioethics at the University of Pennsylvania.