Where’s the Advocacy, Komen?

In a Susan G. Komen for the Cure® blog post (Jul. 20, 2011) the organization writes;

The American College of Obstetrician and Gynecologists today recommended annual mammograms for women 40-49, modifying earlier recommendations in what Susan G. Komen for the Cure is hailing as a “victory for women’s health.”

In the same week, Nancy Brinker, Komen’s self-styled global leader of the breast cancer movement appeared on the CBS Early Show in a segment hosted by Rebecca Jarvis, and CBS’ own in-house medical attaché’, Dr. Jennifer Ashton, to discuss this latest development in mammography screening guidelines.

Ms. Brinker’s public comments and appearances are to be expected in relation to the ongoing debate about the benefits, limitations, and risks of one-size-fits-all screening guidelines. The debate has a long history, and the Komen organization has been deeply committed to mammograms for thirty years without, unfortunately, much regard for the concerns raised in the medical and scientific community that call for improved accuracy, quality, and the development of specific risk profiles to determine which groups of people have the greatest chance of benefitting from screening.

However, Brinkers’ appearances at this point in contemporary history involve more than the simple offering of an “advocate perspective” on screening. Brinker consistently uses her message to sell her brand.

Nancy Brinker on CBS Early Show

Although a departure from her usual pink ensemble, Ms. Brinker appeared resplendent on the CBS Early Show wearing a tailored orange jacket embroidered with Komen’s trademarked running ribbon logo. As the key figure head for Komen’s pink-ribbon brand, most of Ms. Brinker’s outfits feature the trademarked running ribbon. The Komen organization imprints the logo on a multitude of products from t-shirts to eggs to perfume to their founder. To our knowledge Brinker has yet to have the running ribbon tattooed on her body.

Dr. Jennifer Ashton on CBS Early Show

As reporters, pundits, individuals, and MDs set up camp on one side or the other of the mammogram screening war zone they too get caught up in the branding.

CBS’s own medical reporter, Dr. Jennifer Ashton, had Komen’s embroidered logo on her blouse. Is Dr. Ashton an employee of the Komen organization? Is CBS running an advertorial for Komen? Is the television spot another marketing strategy involving Komen product placement? Thankfully the host, Rebecca Jarvis, appeared to be trademark-free perhaps to indicate that CBS was committed in some regard to a more objective discussion of the issue.

Screenshot of CBC Early Show segment

In the CBS video, Dr. Ashton outlined three of the more recent mammogram screening recommendations about when an average risk woman should begin screening and with what frequency. This is not an exhaustive list of organizations offering recommendations on screening, but it includes the American College of Obstetricians and Gynecologists (ACOG), the American Cancer Society (ACS),  the National Cancer Institute (NCI) and  the U.S. Preventive Services Task Force (USPSTF).

The simple difference in these guidelines begs an important question that Ms. Jarvis asked of Ms. Brinker;

“Why can’t they get together and pool their data and come to one conclusion on this?”

Fascinating question, Ms. Jarvis!  As the “leader” of the global breast cancer movement Komen would be in a strong position to convene and moderate such a meeting of the minds. Review the data. Establish strong and objective standards for analyzing the data. Identify gaps. Point out risks, benefits, and limitations. Determine the conditions under which screening works for particular groups of women. The USPSTF actually did this already. Here’s a video with one of the members of the task force, Dr. Russ Harris, discussing the information. But okay, let’s bring more groups to the table. Why not? Clearly, there is A LOT at stake in this issue. Instead of engaging the question, Ms. Brinker said this;

“Well, we’ve had a conclusion for many, many years at Susan. G. Komen, almost a generation.  Screening saves lives. The 5-year survival rates for breast cancer diagnosed early is 98 percent…and this is largely due to screening and early diagnosis.”

Ms. Brinker believes, and therefore Komen believes, that screening saves lives. Specifically, mammography screening. Not MRI. Not ultrasound. Not access to quality care. Not newer and better treatments. Not targeted therapies. Not biological, genetic, and molecular factors that are yet unknown. Not avoiding the disease in the first place. Screening. Brinker’s unflinching attachment to this 30-year-old conclusion is astounding. By stating this message over and over in an echo chamber, she loses sight of the forest for the trees. Even ACOG – which supports the general age 40 annual screening guideline – admits openly:

“What’s clear is that guidelines aren’t hard and fast rules,” says Thomas J. Herzog, MD, clinical professor of obstetrics and gynecology at Columbia University Medical Center in new York City. “Guidelines often need to be individualized to the patient.”

Guidelines, Ms. Brinker, aren’t hard and fast rules. Your new best friend ACOG said so. Yet Brinker lives in a world that relies on hard and fast rules. Screening saves lives. Buy the brand. End of story. In an attempt to delegitimize the Task Force that reached a conclusion different from hers, Brinker remarked;

“…The Healthcare Prevention Taskforce was highly confusing twenty months ago when they took this on, because they were scientists looking at data that most of us already knew.”

This statement deserves some active listening. The Healthcare Prevention Taskforce to which Brinker refers is the U.S. Preventive Services Task Force (USPSTF) – a government mandated working group, that is

“…[a]n independent panel of non-Federal experts in prevention and evidence-based medicine and is composed of primary care providers (such as internists, pediatricians, family physicians, gynecologists/obstetricians, nurses, and health behavior specialists).”

The USPSTF did not “take this on.” They were mandated to systematically and comprehensively investigate and analyze the existing data on screening. Of all of the groups who have made recommendations on the subject it is, in reality, the only body that does not have a clearly vested stake in the findings. This is not to say that the merit of the findings, the procedures used, and the translational capacity of the conclusions should not be evaluated in their own right. They should. But there is no conflict of interest concerning this group of investigators and the issue at hand. And, if “most of us” already “knew” about that data, then why didn’t this information come out ten years earlier? Wait, it did. In 2001 a critical review of the clinical trials on screening was published in the medical journal The Lancet. It pooled the results and found only a 16% reduction in the risk of dying of breast cancer for women who were screened.

Komen, on the other hand, does have a vested interest in screening. It has been the organization’s rallying call for three decades. It comprises the bulk of Komen’s messaging and has become the raison d’etre of its existence (besides selling pink-ribbon products). Komen spends some money on research (as we have pointed out previously), but the bulk of the program spending is in “education.” What are people educated about? Screening. And the education stops with “Get your mammogram. It saves lives.”

Ms. Brinker brings the point home in her rhetorical monologue when she shares her vision of the future;

“Mammography is not 100% perfect.  It should be. We have the ability to make it perfect in the U.S. today.  It’s political will. You know it should be more accurate.”

It would be nice if mammograms were 100% perfect. Agreed. If they didn’t have a rate of false positives that approached 80%. If they didn’t miss 25-40% of tumors that were cancerous. If they could indicate whether a pre-cancer would progress or not into something dangerous. If “perfection” were achieved, however, the result would be a reduction in overtreatment and overdiagnosis (a good thing), but based on current knowledge about breast cancer and treatment it is not likely to reduce the number of deaths from the disease, and it would do nothing in terms of prevention. It would do a better job of diagnosing cancers, perhaps, but it would not stop people from dying of breast cancer.

Ms. Jarvis then asks Ms. Brinker to clarify what she means by “political will.” Given that the federal government enacted the Breast and Cervical Cancer Mortality Prevention Act (1990) to insure access to screening for low-income, uninsured, and underinsured women and the Breast and Cervical Cancer Treatment Act (2000), which gives States the option of providing Medicaid coverage to low-income, uninsured and underinsured women, under 65 years of age, who have been screened and diagnosed through the National Breast and Cervical Cancer Early Detection Program and need treatment, political will does not seem to be at issue with regard to a commitment to screening. Acknowledging the limitations of screening, the lobbying of technology manufacturers, and the development of new diagnostic tools is another story.

Unfortunately Ms. Brinker does not attend to these issues or give any clear account of her perception of political will. She discusses the ability of airport screening technology to see what people have eaten. How this relates to the diagnosis of malignant breast cancers eludes us. Instead Ms. Brinker reins in the discussion to Komen’s agenda on screening mammography;

“[B]ut the issue is it does work. It works.  It works in a broad population and people are now living longer because of it.”

It does work. Sometimes. Depending upon the study cited there has been a documented reduction in mortality due to screening that is somewhere between 10 and 30 percent. That’s a pretty low percentage really. But Nancy just repeats over and over. It works. It works. It’s a “victory for women’s health.“

• What about the studies that show 70 to 90% of people do not have their lives lengthened as a result of routine screening.

• What  about the 5 to 50% of people who are overdiagnosed?

• What about the 20 to 30% of people who are over-treated, sometimes for conditions that are not life-threatening?

• What about the estimated one-third of the people considered to be “cured” of breast cancer who will then have a recurrence or develop metastatic disease, even those who were diagnosed at an early stage?

• What about the fact that the actual number of women and men dying from metastatic breast cancer has hovered around 40,000 per year, with no significant decrease since 1990?

Do any of these statistics feel like a “victory for women’s health?”

As the largest breast cancer fundraising and advocacy organization in the world, we expect more from Komen. Why is the Komen organization not asking these questions? Why are they aggressively promoting a stance on screening that is clearly questionable given existing evidence? Why is Komen avoiding the complicated questions and concerns that others have about screening? Isn’t it Komen’s job to advocate for the best interests of the entire breast cancer community? Doesn’t that include pragmatic criticism and scientific analysis of existing research as well funding new research to answer lingering questions?

A victory for women’s health would be eradication of breast cancer.  Not a screening technology, which is diagnostic at best, and doesn’t reduce the chances of dying from breast cancer for 70 to 90 percent of the population.

Where’s the advocacy, Komen? Who do you work for?

KomenWatch grants full permission to republish our editorials in their entirety, with proper citation and link.

Citation for this editorial: KomenWatch. (2011, July 26). Where’s The Advocacy Komen? Retrieved from http://www.komenwatch.org/.

Candidates: Support breast cancer research to get our vote

Title: Candidates: Support breast cancer research to get our vote

Author: Open Letter from Mary Boyd, Gloria Scienski and Neel Stallings, all of the Komen Advocacy Alliance

Publication: Charlotte Observer

Publication Date: October 28, 2010

Between today and Election Day, close to 3,000 women, and a few men, will be diagnosed with breast cancer across the United States. Tumors don’t care what party you belong to.

In North Carolina last year, an estimated 5,470 women heard the words “You have invasive breast cancer,” and 1,310 died of the disease.

We know you recognize the Komen name. Since 1982, Susan G. Komen for the Cure has meant increasing awareness and detection of breast cancer and funding research for its cures. The organization’s promise is to save lives and end breast cancer forever. Komen thinks big.

The five Komen Affiliates that serve North Carolina invested $5.4 million in their local communities last year for early detection and treatment of breast cancer, breast health education and outreach. Since 1990, Komen has awarded more than $17 million in research grants in North Carolina to Duke University, National Institute of Environmental Health Sciences, University of North Carolina and Wake Forest University.

Stepping up the lobbying

Now you need to learn the name “Komen Advocacy Alliance.” We’re not new to the political scene, but we’re getting more visible. Our goal is to translate Susan G. Komen for the Cure’s promise into action at all levels of government to discover and deliver the cures. Many Alliance members are survivors, as the writers of this letter are, and we mind our manners but never lose sight of our mission.

Link to Full Article

CONFRONTING CANCER; Advocates Strive to Defeat Cancer but Disagree on Methods

Title: CONFRONTING CANCER; Advocates Strive to Defeat Cancer but Disagree on Methods

Author: Sheryl Gay Stolberg

Publication: New York Times

Publication Date: April 9, 2002

When senators convened a hearing in February on the effectiveness of mammograms, it was only natural that they would call Fran Visco to testify.

At 54, Ms. Visco, president of the National Breast Cancer Coalition, is widely regarded as Washington’s most powerful advocate for women with the disease. She has almost single-handedly persuaded lawmakers to appropriate millions for research. To do otherwise would be political suicide, they have learned from Ms. Visco and her vocal coalition of more than 600 member organizations and 70,000 people.

”For legislators,” Joann Schellenbach, a longtime official of the American Cancer Society, said, ”Fran is the spokeswoman for what they see as the advocacy community.”

But on mammography, there is little community among the advocates. Most embrace the government’s recommendation that all women older than 40 undergo routine screening. But not Ms. Visco. She and her coalition advise women to study the benefits and risks of screening and then decide for themselves.

Link to Full Article