WASHINGTON — Two days after she disclosed her private battle with cancer, Rep. Debbie Wasserman Schultz began championing legislation that calls for spending $45 million over the next five years to boost awareness of breast cancer risks among younger women.
"It is my hope that by sharing my story, we will pass the (bill) and further reduce the death rate of young women diagnosed with breast cancer," the Florida Democrat said at the time, surrounded by breast cancer treatment and research activists.
But the effort has attracted surprising criticism: A leading breast cancer prevention researcher and the National Breast Cancer Coalition have panned the legislation as unnecessary and even potentially harmful.
The bill, the coalition wrote to Wasserman Schultz, "presumes we know what to tell these women about prevention, risk reduction and early detection. We do not."
Leslie Bernstein, director of the Division of Cancer Etiology at the City of Hope Comprehensive Cancer Center, used stronger language in a letter to the bill's Senate sponsor. She warned that the bill "does too much HARM!"
"It sounds wonderful on the surface," wrote Bernstein, a 2007 recipient of the Komen for the Cure Brinker Award, "but cannot help reduce the burden of breast cancer in young women."
She writes that science has "NO EVIDENCE-BASED methods to lower young women's risk" and that the bill could provide women with "a false sense of control."
Marcia Stein, the chief executive officer of the Young Survival Coalition, which was involved in drafting the bill, contends the legislation will help young women better protect themselves.
"The intent of the legislation has been lost," Stein said of the criticism. "The intent is to teach women good breast health and allow them to be better advocates for themselves."
The controversy first surfaced in The Cancer Letter, an influential cancer newsletter that highlighted opposition to the bill in its edition Friday. The newsletter quoted a number of researchers, including Donald Berry, chairman of the biostatics department at the University of Texas' M.D. Anderson Cancer Center, who called the legislation "misguided."
Berry said in a telephone interview that he worries the legislation could spark fear. He notes that breast cancer in women under 40 is very rare and that most studies indicate that beyond quitting smoking, there are no steps to take to reduce risk.
"I buy into exercising and eating well and not becoming obese, but the evidence associated with it for reducing risk of cancer is really quite slim," Berry said. "What bothers me is going out into the masses and getting them to worry about something that just may not be worth worrying about."
Bernstein wrote that the bill's emphasis on breast self examinations is also misplaced, noting that all young women have bumps in their breasts.
"Recommending breast self-exam will cause fear, false-positive results of various screenings, unneeded biopsies, and mistrust of the medical establishment," she wrote.
A spokesman for Wasserman Schultz said that the national education campaign proposed in the bill would be created by the national Centers for Disease Control and Prevention and other experts in the field.
"Their concern is that we don't know what to say to young women, well, we're not going to be dictating what gets said," said spokesman Jonathan Beeton, who said the legislation was developed by consulting with a number of breast cancer organizations. "It's going to be the CDC and cancer experts determining what information should be distributed and targeted to young women."
Beeton noted that Wasserman Schultz, who had both breasts removed after detecting a lump through a self examination, "believes strongly from her own personal experience" that many physicians and young women don't realize that young women can be diagnosed with breast cancer.
"At the end of the day," Wasserman Schultz wrote on her Web site publicizing the bill. "The old saying rings true: knowledge is power."
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