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National Cancer Institute Ignores Advice of Consensus Panel on Mammograms

Science-Based Recommendation “Crashes and Burns”

The Question is: Why?

In a surprising move, the National Cancer Institute has opted to recommend routine mammograms for all women starting at age 40. This decision reverses the NCI’s earlier policy anchored on the opinion that the data were too uncertain to recommend routine screening for the 40 - 49 age group.

What’s so striking about the policy reversal is not the decision itself, but the fact that it went contrary to the recommendations of an NIH consensus panel. This panel was chaired by Hopkins epidemiologist Leon Gordis and it was convened in January by NCI specifically to evaluate the data on the effectiveness of mammograms for women 40 - 49. As covered widely in the lay press and reported last month in the Epi Monitor, the Gordis panel found the existing data too uncertain to recommend universal screening for women in their 40’s. The Gordis panel said that each woman in her 40’s should decide for herself about mammograms once properly informed.

President’s Panel Makes Suggestion

Rather than accepting this advice, which supported NCI’s existing policy not to recommend universal screening, the NCI took the advice of yet another group, the National Cancer Advisory Board. This presidentially appointed panel, which was constituted to review grant applications and advise the Director, and which did not review any new data on the breast cancer screening issue, voted 17 - 1 in February in favor of screening. Interestingly, the lone opposing vote on that Board was that of Kay Dickersin, a University of Maryland epidemiologist and a breast cancer survivor. The NCI screening policy now resembles the recommendation of the American Cancer Society for women in this age group.

The “individual choice” screening recommendation of the Gordis panel met with strong opposition in Congress and elsewhere among screening proponents. To better understand why this recommendation “crashed and burned,” the Epi Monitor spoke with some of the epidemiologists involved.

           

One overriding factor was the absence of a universal health care system in the United States, Dickersin believes, and the desire on the part of many advisors to protect women’s rights to mammography. Without the recommendation to screen, individual women who wanted this service might not have had it covered under their health insurance. Also, “people are so afraid of this disease that they want access to anything that might help,” she said.

The Issue of Money

Another factor mentioned by Dickersin is that many Americans hold the view that they have a right to all medical technology and that “money is only money.” Decisions tend not to be weighed in terms of social as well as individual good, and “the benefit to expenditure ratio should be considered but it is not,” she said. People who bring up money are considered crass, she added.

A related influence on the fate of the Gordis panel’s recommendation was that of suspected financial interests, according to Dickersin. She noted that the interests of HMO’s in keeping costs down were often mentioned during the debate, but less obvious were the interests of radiologists and hospitals for whom mammograms may be huge money makers.

Politics

Another factor is that scientists lost control of the processes for considering the screening question, according to CDC epidemiologist Nancy Lee. “We did it to ourselves. In trying to have a reasoned discussion we allowed the process to be taken over by pseudo scientists...regular scientists are not used to people who break the rules,” she said.

The background on the screening controversy was described in detail in a Science article on February 21, 1997 entitled “The Breast-Screening Brawl.” It stated “the controversy over whether regular mammograms should be recommended to women in their forties has been stoked by uncertain evidence, opposing world views, and plenty of invective.”

Politics has been mentioned as a big player in the NCI decision although this has been denied by the agency. There were reports that the Director’s job was threatened by politicians, but this has also been denied by NCI.

Senator Arlen Specter held four congressional hearings on the subject. According to press reports, he praised NCI’s decision to recommend routine screening, but he said he would investigate “why it took so long to set the record straight.”

The Wrong Message

One factor which may be surprising is the misunderstanding about mammograms themselves and what they can accomplish. It sounds incredible, but some people believe that mammograms actually prevent breast cancer, said Dickersin. They confuse the difference between primary and secondary prevention and believe that being screened once a year protects them from the disease.

Dickersin expressed strong views about the paternalism which she believes is also behind the decision to give women a clear and simple statement about what to do in regards to screening. There is a widespread belief that women “will be confused” if there is no simple recommendation, she says. Its wrong, she adds, because our health messages have to become more complex. She cited the example of hormone replacement therapy as an example of a complex message that women are dealing with. Everyone says something is wrong if it is not simple, she said, and that itself is wrong.

Despite the route taken by their agency, some NCI officials would welcome the  more equivocal advice. Otis W. Brawley, Director of the Office of Special Populations at NCI, was reported in the New York Times (3/28/97, p. A15), as saying that it would be more “honest” to give women the whole story. “I’ve always believed in telling people what you know and then letting them decide for themselves,” Brawley reportedly said. “To say what some people are saying, that obviously mammography is saving lives of women in their 40s, is lying to the American people.”

Published April 1997  v

 

 
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