The epidemic that never wasBMJ 2002; 325 doi: https://doi.org/10.1136/bmj.325.7367.782 (Published 05 October 2002) Cite this as: BMJ 2002;325:782
Did activists and the media create a suburban legend?
When is an epidemic not an epidemic? When do activist groups help a sometimes uncritical media to create one?
On 6 August, the New York Times reported that a seven year, $8m study by the United States National Cancer Institute on possible links “between pollution and high rates of breast cancer on Long Island had failed to show any connection between the disease and pesticides that were once widely used on the island.”
This was a blow to 1in9, an activist group on Long Island that for years had called for studies of environmental risks for breast cancer. (1in9 refers to the fact that one American woman in nine will develop breast cancer if she lives to be 85.) Breast cancer rates on Long Island were said to be 30% higher than the national average, a figure often cited by women with breast cancer, by politicians seeking votes and funds, by magazines seeking readers, and even by newspapers such as the New York Times. Journalists on deadline probably didn't check the seemingly convincing numbers. 1in9 no longer uses the 30% figure, but still refers to an “epidemic.” In total, $30m of federal funds have gone into the Long Island Breast Cancer Study Project, which includes 12 studies.
No one knows how the 30% figure originated. Kristine Smith, a spokesperson for the New York State Department of Health, said she didn't know where it came from. “I couldn't confirm it with anyone here. It's often repeated, and it's taken on the air of infallibility,” she said.
Long Island, 125 miles long, stretches out into the Atlantic from Brooklyn and Queens, which are part of New York City, then into Nassau and Suffolk Counties. Nassau is commuter territory; Suffolk is more rural and includes luxury summer resorts in the Hamptons as well as farms using pesticides. Both counties have mostly prosperous populations, chemical industries, toxic waste sites, and draw their water from an aquifer that may be becoming more polluted. Rates of breast cancer are higher than the national average, as I wrote in a comprehensive article for New York magazine in 1994. But not enormously higher, not 30% higher.
Breast cancer rates on Long Island are 1.1% to 3.4 % to 13.5% higher than the national average, depending on the study, and typical of the north east. The rates are partly explained by demographic factors: higher education, higher social status, Jewish ancestry (which may relate to inherited genetic predisposition), early menarche, late childbearing, late menopause, high fat diet, and alcohol use.
“Long Island is not the breast cancer capital of the United States, as the activists say. It's the capital of breast cancer activists,” said Dan Fagin, who has covered the “epidemic” for 12 years as environmental reporter for Newsday, Long Island's largest daily newspaper. “Long Island has a higher incidence of breast cancer, consistent with other affluent suburbs. Newsday has been saying it's not an epidemic, but it's not widely understood by the public,” he said.
However, Mr Fagin said, “Demographic factors explain only about half the increased incidence on Long Island. Something else is going on.” Dr Barron Lerner, author of The Breast Cancer Wars and an associate professor at Columbia University, said the Long Island activists “got the environment front and centre on the radar screen.”
Toby Wertheim, producer for CBS Evening News, called it “a non-epidemic.” So how did so many people get taken in by the 30% figure? Journalists related to the activists, she said: “They were savvy people who looked a lot like us. They were white, middle or upper income, baby boomers … not crack cocaine users. When baby boomers go through a stage, it becomes a national agenda.”
Have journalists been pressured to cover this story? Christine Gorman of Time magazine, who wrote a national cover story on breast cancer, said, “The media are always used by people who want to get their message out. It's part of our culture.”
Lisa Collier Cool, a freelance writer whose articles on breast cancer have been published in Good Housekeeping and other leading US magazines, said, “The media are always looking for interesting stories. Small groups of activists know how to find media people. They can put a spin on the story, or make a package [of information].”
On 29 August, the New York Times published an article by science writer Gina Kolata, headlined “Epidemic that wasn't,” reporting the National Cancer Institute's study of Long Island breast cancer rates. Kolata called the “epidemic” a “suburban legend,” and acknowledged that the New York Times was among those that had bandied about the 30% figure.
October is National Breast Cancer Awareness Month in the United States. Expect to see more stories.