The downside of awareness campaigns

As predictably as the leaves turn yellow in autumn, America turns pink each October with the arrival of National Breast Cancer Awareness Month. From shopping malls to football stadiums, the campaign’s signature pink ribbons seem to be everywhere. Yet some experts are questioning whether this awareness campaign is truly helping women with breast cancer.

The stark reality is that in the 26 years since the campaign began, deaths from breast cancer have dropped only slightly — about 2% per year, starting in 1990. According to the National Breast Cancer Coalition in Washington, D.C., 117 women in the U.S. died of breast cancer every day in 1991; today that number is 110.

“I don’t think people understand the lack of progress,” says Fran Visco, the coalition’s president.

Nor have the awareness campaign’s objectives kept pace with advances in breast cancer research, says Dr. H. Gilbert Welch of the Dartmouth Institute for Health Policy and Clinical Practice in Lebanon, N.H. Doctors used to think the priority was to catch breast tumors when they were small — and presumably most treatable. As a result, they emphasized the importance of annual mammograms.

But now, Welch says, scientists have come to understand that breast cancer isn’t one disease but many. Some tumors are indolent and never cause trouble. Others grow slowly and may eventually spread. The most aggressive cancers metastasize before doctors and patients even know they’re there.

Unfortunately, doctors can’t tell which tumors are harmless and which are truly dangerous — so they wind up treating all of them as if they were the worst kind.

But screening tests like mammograms and self-exams are most adept at finding the indolent cancers, Welch says. As a result, the more we screen, the more women we subject to surgery, chemotherapy and radiation for cancers that never would have harmed them. A paper published last month in the New England Journal of Medicine estimated that for every life saved by a screening mammogram, five to 15 other women needlessly became diagnosed and treated.

National Breast Cancer Awareness Month “was helpful at the time, but it has outlived its usefulness,” says Dr. Susan Love, a breast cancer surgeon at UCLA’s David Geffen School of Medicine and author of “Dr. Susan Love’s Breast Book.”

“You see this message that the best prevention is early detection, but that’s not prevention, that’s finding a cancer that’s already there,” Love says. “Early detection is a really nice message — it makes you feel in control, but it doesn’t address our current understanding of how cancer works.”

The organizers of the awareness campaign say there’s no need to revamp their message.

“If it’s not broken, I don’t think we should try and fix it,” said spokeswoman Laurie Casaday, senior manager of corporate affairs in oncology for drug maker AstraZeneca, National Breast Cancer Awareness Month’s founding sponsor.

The campaign’s website states that the organization remains “dedicated to educating and empowering women to take charge of their own breast health by practicing regular self-exams to identify any changes, scheduling regular visits and annual mammograms with their healthcare provider, adhering to prescribed treatment and knowing the facts about recurrence.”

Other campaign literature highlights the stories of women who believe their lives were saved by a screening test. But the unsettling reality is that many of these lives were never actually threatened, says Gayle A. Sulik, author of “Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health.”

Sulik says the problems of over-diagnosis and over-treatment are rarely discussed in ads, promotional literature or advocacy messages. Neither of those terms appears anywhere on the websites for National Breast Cancer Awareness Month or Susan G. Komen for the Cure, the oldest and largest breast cancer advocacy group.

And that’s no accident, Welch says.

“It’s a common problem with disease awareness campaigns and patient advocacy groups,” he says. “If you look into their funding sources, you’ll often find a pharmaceutical company or device maker who stands to benefit from an expansion in the number of people with the condition.”

Welch calls AstraZeneca’s sponsorship of the awareness month “a huge conflict of interest,” since encouraging women to get screened will invariably increase the number of breast cancer diagnoses and thus the market for their breast cancer drugs Arimidex, Faslodex, Nolvadex and Zoladex.

That charge is vigorously denied by Casaday. “This is not about selling a breast cancer drug,” she says. “It’s about making sure woman are educated about their breast health.”

When the campaign began, women were less likely to seek immediate attention for a lump in their breast, while today woman are well-versed in the early signs of breast cancer, Casaday says. She notes that last month’s New England Journal of Medicine study pointed to breast cancer awareness as a key factor in reducing breast cancer deaths.

In addition, mammography rates climbed significantly in the 1980s and 1990s following the introduction of National Breast Cancer Awareness Month, says Dr. Otis Brawley, chief medical officer of the American Cancer Society, another of the campaign’s sponsors.

Mammography may be flawed, but the tests still save lives, he says.

“We advocate mammography, but we should not be complacent with the technology we currently have,” Brawley says. Even if every eligible woman got a mammogram, breast cancer would still claim 40,000 to 46,000 lives each year. Some women do everything right and still die, he says.

Indeed, some critics object to messages that emphasize the need for women to “take charge” of their breast health because they imply that women are at fault if they get the disease, says Angela Wall, communications manager for Breast Cancer Action, a San Francisco-based advocacy group.

“We walk down a very dangerous path when we say it’s about women being proactive, because then we’re blaming women for a disease that they have absolutely no control over,” she says.

Love is trying to change that by cultivating research aimed at identifying breast cancer’s causes so that women might someday have real control over the risks.

She has partnered with the Avon Foundation to create the Army of Women, an initiative that brings women and researchers together for breast cancer studies. One study that will begin recruiting participants this month is modeled on the Framingham Heart Study and will follow a cohort of women for 20 years to look for causes and risk factors for breast cancer. Another project will focus on a vaccine.

“We’re in this mind-set that cancer will be a chronic disease, but it doesn’t have to be,” Love says. By shifting the focus from early detection to prevention, “we can be the generation that stops it.”

health@latimes.com