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MN breast-cancer advocates take opposing views of Klobuchar bill

I spoke on Monday with Christine Norton, co-founder of the Minnesota Breast Cancer Coalition, about the controversial breast-cancer bill that Sen.

I spoke on Monday with Christine Norton, co-founder of the Minnesota Breast Cancer Coalition, about the controversial breast-cancer bill that Sen. Amy Klobuchar, D-Minn., is sponsoring in the Senate.

And late Wednesday I received a written statement about the legislation from Drew Backstrand, president of the Minnesota affiliate of Susan G. Komen for the Cure.

They have opposing opinions of the bill.

Called the Education and Awareness Requires Learning Young (EARLY) Act, the legislation would allocate $45 million over five years to the Centers for Disease Control and Prevention (CDC) to implement a national education campaign to increase breast-cancer awareness among women under the age of 40. More than 10,000 women in this age category are diagnosed with breast cancer in the United States each year.

As I posted last week, leading cancer scientists, public health officials and breast-cancer advocacy groups have serious concerns about the EARLY Act. To that list you can add another well-known name, the women’s health advocate Dr. Susan Love. In a letter to Rep. Debbie Wasserman Schultz, D-Fla., the EARLY Act’s key sponsor in the House of Representatives, Love wrote:

A diagnosis of breast cancer in a young woman is never welcome but this bill takes the wrong tack. It assumes that we have some knowledge of risk factors, methods of early detection and understanding of genetics that do not currently exist. … What is really needed is more research on what the cause and prevention of breast cancer really is.

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Norton, a breast-cancer survivor, shares Love’s concerns. She believes that the EARLY Act, if passed, will do more harm than good, primarily because the bill will lead to many young women having unnecessary biopsies and other invasive procedures — a message she personally conveyed earlier this year to Rose Baumann, Klobuchar’s health legislative aide. But the bill continues to wend its way through Congress.

“It’s upsetting to me that the preponderance of evidence was not persuasive to stop the introduction of this legislation that would call for $45 million over a five-year period,” says Norton. “I understand that that amount is ‘decimal dust,’ but to a taxpayer, it’s significant, especially at this time when we’re supposed to be focusing on health-care reform.”

One of the most contentious issues of the bill is its emphasis on breast self-exams for women under 40, despite research from large randomized trials that have shown such exams have no effect on either detecting breast cancer or influencing survival rates in women of any age. (A small study reported at a medical meeting this spring reported that BSEs were as accurate as mammography and magnetic resonance imaging at detecting new cancers. But the 147 women in this study were at high risk for breast cancer, and, as one doctor noted to the press, “A test in a high-risk population always works better than it will in a general population.”)

Most breast-cancer organizations have either eliminated or subdued their recommendations for women to perform monthly breast self-exams. “I tell women what Susan Love advocates, which is to become familiar with your body, but don’t feel you need to go out on a monthly search-and-destroy-mission,” says Norton.

Changing language?
I didn’t get to speak with Backstrand, but from his statement it’s clear that Susan G. Komen for the Cure (arguably the best-known breast-cancer advocacy group in the country) is supporting the EARLY Act. In his statement, Backstrand wrote:

We understand that there is considerable debate about how early to begin educating women and what we should tell them. Yet we know from personal experience that women should not wait until they’re over 40 to become informed about the risks associated with having breast cancer or to develop an understanding of their personal breast health.

Backstrand also noted that:

the bill’s sponsors have worked closely with our national staff and scientific advisors, as well as others in the cancer community, to develop and enhance the language [in the EARLY Act]. Senator Klobuchar’s version of the bill reflects this ongoing conversation by emphasizing evidence-based messaging and adherence to the peer-reviewed guidelines development by the National Comprehensive Cancer Network.

“I certainly do hope that the CDC would take to heart the evidence,” says Norton. “I think they would be hard-pressed to support a message for monthly self-breast exams.”

A pledge of neutrality
Wednesday, Daniel Smith, president of the American Cancer Society Cancer Action Network, the advocacy affiliate of the American Cancer Society, released a letter to Rep. Wasserman Schultz in which he announced that his organization was going to

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continue to work with you to find an approach with respect to young women and breast cancer in H.R. 1740 that we could both support. At the same time, however, I believe it is important to state for the record that we are officially neutral on the legislation as we continue to work together to find a resolution that is consistent with our mutual desire to fight this disease.

Such a neutral position on cancer legislation is, as Norton points out, “very atypical for the American Cancer Society. In fact, that’s a first in my memory.”

Will this legislation get the votes it needs in the Senate to pass? (It has enough in the House.) Stay tuned.