Komen for the Cure’s Biggest Mistake Is About Science, Not Politics

By Christie Aschwanden | February 10, 2012 12:08 pm

Christie Aschwanden is a 2011 National Magazine Award finalist whose work has appeared in The New York Times, Mother Jones, Reader’s Digest, Men’s Journal, and New Scientist. She’s a contributing editor for Runner’s World and writes about medicine for Slate. Follow her on Twitter @cragcrest or find her online at christieaschwanden.com.

This post originally ran on the blog Last Word on Nothing.

Over the week or so, critics have found many reasons to fault Susan G. Komen for the Cure. The scrutiny began with the revelation that the group was halting its grants to Planned Parenthood. The decision seemed like a punitive act that would harm low-income women (the money had funded health services like clinical breast exams), and Komen’s public entry into the culture wars came as a shock to supporters who’d viewed the group as nonpartisan. Chatter on the Internet quickly blamed the move on Komen’s new vice president of Public Policy, Karen Handel, a GOP candidate who ran for governor in Georgia on a platform that included a call to defund Planned Parenthood. Komen’s founder, Ambassador Nancy Brinker, attempted to explain away the decision, and on Tuesdy, Handel resigned her position.

The Planned Parenthood debacle brought renewed attention to other controversies about Komen from recent years—like its “lawsuits for the cure” program that spent nearly $1 million suing groups like “cupcakes for the cure” and “kites for the cure” over their daring attempts to use the now-trademarked phrase “for the cure.” Critics also pointed to Komen’s relentless marketing of pink ribbon-themed products, including a Komen-branded perfume alleged to contain carcinogens, and pink buckets of fried chicken, a campaign that led one rival breast cancer advocacy group to ask, “what the cluck?”

But these problems are minuscule compared to Komen’s biggest failing—its near outright denial of tumor biology. The pink arrow ads they ran in magazines a few months back provide a prime example. “What’s key to surviving breast cancer? YOU. Get screened now,” the ad says. The takeaway? It’s your responsibility to prevent cancer in your body. The blurb below the big arrow explains why. “Early detection saves lives. The 5-year survival rate for breast cancer when caught early is 98%. When it’s not? 23%.”

If only it were that simple. As I’ve written previously here, the notion that breast cancer is a uniformly progressive disease that starts small and only grows and spreads if you don’t stop it in time is flat out wrong. I call it breast cancer’s false narrative, and it’s a fairy tale that Komen has relentlessly perpetuated.

It was a mistake that most everyone made in the early days. When mammography was new and breast cancer had not yet become a discussion for the dinner table, it really did seem like all it would take to stop breast cancer was awareness and vigilant screening. The thing about the false narrative is that it makes intuitive sense—a tumor starts as one rogue cell that grows out of control, eventually becoming a palpable tumor that gets bigger and bigger until it escapes its local environment and becomes metastatic, when it can kill you. And this story has a grain of truth to it—it’s just that it’s far more complicated than that.

Years of research have led scientists to discover that breast tumors are not all alike. Some are fast moving and aggressive, others are never fated to metastasize. The problem is that right now we don’t have a surefire way to predict in advance whether a cancer will spread or how aggressive it might become. (Scientists are working on the problem though.)

Some breast cancers will never become invasive and don’t need treatment. These are the ones most apt to be found on a screening mammogram, and they’re the ones that make people such devoted advocates of mammography. H. Gilbert Welch of the Dartmouth Institute for Health Policy and Clinical Practice, calls this the overdiagnosis paradox. Overdiagnosis is what happens when a mammogram finds an indolent cancer. A healthy person whose life was never threatened by breast cancer is suddenly turned into a cancer survivor. She thinks the mammogram saved her life, and so she becomes an advocate of the test.

Some cancers behave just the opposite of these slow-growing, indolent ones. Researchers now know that some cancers are extremely aggressive from the start. There’s simply no such thing as “early” detection for these cancers. By the time they’re detectable by any of our existing methods, they’ve already metastasized. These are the really awful, most deadly cancers, and screening mammograms* will not stop them.

Then there are cancers that fall somewhere in between the two extremes. These are the ones most likely to be helped by screening mammography, and they’re the lives that mammography saves. How many? For women age 50 to 70, routine screening mammography decreases mortality by 15 to 20% (numbers are lower for younger women). One thousand women in their 50′s have to be screened for 10 years for a single life to be saved.

So let’s recap. Getting “screened now,” as the Komen ad instructs can lead to three possible outcomes. One, it finds a cancer than never needed finding. You go from being a healthy person to a cancer survivor, and if you got the mammogram because of Komen’s prodding, you probably become a Komen supporter. Perhaps a staunch one, because hey—they saved your life and now you have a happy story to share with other supporters. Another possibility is that the mammogram finds a cancer that’s the really bad kind, but you die anyway. You probably don’t die later than you would have without the mammogram, but it might look that way because of a problem called “lead time bias.” The third possibility is that you find a cancer that’s amenable to treatment and instead of dying like you would without treatment, your life is saved. Here again, you’re grateful to Komen, and in this case, your life truly was saved.

Right now, breast cancer screening sucks. It’s not very effective, and if you measure it solely based on the number of lives saved versus healthy people unnecessarily subjected to cancer treatments, it seems to cause more harm than good. For every life saved, about 10 more lives are unnecessarily turned upside down by a cancer diagnosis that will only harm them. In a study published online in November, Danish researchers concluded that, “Avoiding getting screening mammograms reduces the risk of becoming a breast cancer patient by one-third.”

But it’s not quite that simple. Some people really are helped by mammography screening, and if you’re the one helped, it’s hard to discount that one life. Right now mammography is the best tool we have. Welch, who has spent more time than probably anyone else in America studying this issue, has deemed the decision about whether or not to get breast cancer screening a “close call.”

Reasonable women can decide that for them, the potential benefits outweigh the risks. Other reasonable women will decide that for them, the risks outweigh the potential benefits.

Komen isn’t wrong to encourage women to consider mammography. But they’re dead wrong to imply that “the key to surviving breast cancer” is “you” and the difference between a 98% survival rate and a 23% one is vigilance on the part of the victim. This message flies in the face of basic cancer biology.

Between 2004 to 2009, Komen allocated 47% of it $1.54 billion toward education and screening.  Much of its education messaging promotes the same false narrative as its ads, which means they are not only not furthering the search for a cure, they are harming the cause. By implying that the solution to breast cancer is screening, Komen distracts attention from the real problem, which is that way too many women (and men) are still dying of breast cancer, and screening is not saving them. We still can’t prevent breast cancer, because we don’t know what causes it.

To explain why Komen’s fixation on an unscientific story matters, I want to introduce you to Rachel Cheetham Moro. Moro was a cancer blogger, but she won’t be weighing in on this latest Komen controversy, because she died Monday of metastatic breast cancer. Before she left us, she had plenty to say about the false narrative Komen was peddling. Last October she wrote,

How dare Komen so FALSELY suggest that a screening mammogram is all it takes to avoid metastatic breast cancer? How dare Komen so CRUELLY suggest that “not getting screened for breast cancer in time” would be THE reason and the FAULT of the person with metastatic disease who misses out on all the experiences and joyous events of a long and healthy life that so many others take for granted? How dare you, Komen? How dare you?

In August of 2009, I wrote about the overdiagnosis problem for the Los Angeles Times. I happened to be attending a conference with several executives from Komen. When I asked them about overdiagnosis, they were dumbfounded. They had no idea what I was talking about. Nor did they seem very interested. (Interestingly enough, two of these women were breast cancer survivors, and told me they’d found their cancers on their own—in the shower or the like—without a self-exam or mammogram.) VP of health sciences Elizabeth Thompson told me that they just needed to keep plugging their message—“early detection saves lives.”

By contrast, Komen’s chief scientific advisor, Eric Winer of the Dana-Farber Cancer Institute, was fully aware of the problem. He told me that “As painful as it is to admit, we have oversold mammography to the American public.”

That was more than two years ago. Why is Komen clinging to their oversimplified message? They owe Moro an answer.

 

*It’s important to distinguish a screening mammogram from a diagnostic one. Screening mammograms are done on women without any symptoms. A diagnostic mammogram is done to check out a suspicious lump. Disagreements over mammograms center over whether and how often women should have screening mammograms. Diagnostic mammograms are not in dispute. If you find a lump, you need a diagnostic mammogram.

For more on this issue, read Barbara Ehrenreich’s 2001 famous Harper’s piece, “Welcome to Cancerland.”

CATEGORIZED UNDER: Health & Medicine, Top Posts
  • vel

    why are they clinging to a simplified message, because it’s simple and they don’t have to be responsible. They are a marketing company, not a non-profit for women’s health.

  • Paul

    If screening doesn’t help, and if the money SGK was giving to PP was for screening, then that money was being wasted anyway. What am I missing here?

  • DS

    So 47% of their budget is for education and detection. I thought they were trying to find a cure. I’m curious as to how much of their budget actually goes towards a cure. It seems like another 47% goes towards advertising because they always have commercials on.

    -d

  • Kim

    Re Paul: The money PP was getting/is getting is not specifically for mammography, but for breast cancer screening, including (usually) breast exams and education about self-exams. Where PP found a reason to refer for mammography – a suspicious lump, for instance – it referred. I don’t know for sure but I suspect there was a voucher funded by Komen involved in the mammography referral, because PP clinics generally – like most clinics – don’t have their own mammography equipment.

  • JJ

    great article focused on the real issue at hand. We need to find out how to prevent breast cancer and prevent/stop it from spreading for those already affected.

  • http://chemo-brain.blogspot.com/ AnneMarie

    I am a breast cancer “survivor” and the problem most of us have with SGK (those of us that have problems with SGK) is that they spend TOO much on screening and not enough on research. Screening is the best tool we have right now because there is no cure. There is no way to prevent the disease. Early detection is best in MOST cases but this is SAME tool and that is where the problem lies. Some tumors are so aggressive they will spread beyond the breast regardless of how early they are found. You aren’t missing anything, Paul…. it’s the disproportionate amount of funding for screening while they tout themselves as “for the cure.” And, they are so determined to keep their “brand,” they have spent plenty of donor dollars on lawsuits over the use of “for the cure.” One such organization is called “Kites for a Cure” which is a lung cancer foundation (I was involved in their first ever event for a highly personal reason so I was quite upset to see SGK going after them…. ).

    I have a family “cluster” of disease which started with my mom whose initial diagnosis was in 1987. My diagnosis came 19 years later. We were both “early onset” since we were under 50. My treatment was IDENTICAL to hers. In almost 20 years, the best progress made by SGK? Mom’s chemo was “pushed” and mine was dripped. Basically, it came down to an IV pole. Apparently dripping the drugs, reduced the side effects…. Seriously?

    There are other organizations out there that are focused more on research. Others are community minded and seek to help the underserved women. Bottom line. Komen is nothing more than a “middle man” … they take your money. Grab their piece for high salaries and VERY pricey marketing (and apparently attorneys) and then they decide where to send your dollars. Why? In this day and age, a simple internet search would yield several organizations. I suggest people decide if they want research or to help women or to promote awareness…. find an organization whose mission speaks to their beliefs and DONATE DIRECTLY.

    I resent that I have been turned into a “for profit” commodity for the likes of SGK and since my breast cancer diagnosis, my mom developed cancer in her other breast and both of my sisters, too. Obviously, for me…. research is the most important thing. I have a daughter. I do not want her to walk this path.

    Apologies if this is all over the place….. I’m not feeling too great and generally, part of my “chemo fallout” is the need to edit and re-read because sometimes things don’t flow as easily as they did.

    That’s just my two cents from the inside of this messy circle. And, Rachel (who is quoted above) was an acquaintance of mine. In ten days, three women I knew personally all died from metastatic breast cancer. Rachel was the oldest. She was 41. Across the board almost NO money is devoted to the research of metastatic disease yet that is why women die. That number has remained fairly steady in the US for the past 20 years. 40,000 women. I don’t want to be “aware” …. I want action and I want good research….. an IV pole really didn’t do it for me….

    Thanks for listening to my ranting…..

    AM

    ps-between autocorrect and my inability to “see” errors unless I can expand the box, I’m sure I will read a sentence or two once this posts and appear to be illiterate……

  • prochoice

    @ Paul: most women who got screening financed, had (still have) no health insurance, and need free access to an MD, which is provided by PP.
    The outcome for several thousand is, that they have NO breast cancer, a PAP I or II (meaning no cervix cancer), and so on.
    Then they are “free” to worry how to finace their medications for blood pressure, diabetes, and other much more common chronic, but not letal conditions.
    And most people do feel, that the common worries of poverty are preferable to a condition lethal in short time.
    Perhaps access to a MD even means, that they think of getting some vegetable and fruit with the food stamps, or some idea of “If I want to go to school, I should better not begin smoking” for the next generation!!!
    So it was for me. Although I am out of job now, I still think that this last idea was a good one for life.
    Thanks Planned Parenthood!

  • http://discovermagazine.com opinionaire

    Paul, the Planned Parenthood money did not go toward mammograms, which Plannned Parenthood does not provide directly. They refer out those women who meet some criteria for being at risk.

  • KK

    One worry about over testing….If a mammogram picks up a lump…an indolent tumor (love that phrase) and I get it treated. Not only am I am mammogram fan; I am not known my the insurance industry as a very poor risk for insurance of all sorts because now I’m a cancer survivor. If I lose my health benefits and had to pay for health insurance myself I’m sure the cost would be astronomical because I am a known cancer survivor.

    Another reason to avoid mammograms if you don’t have any history of breast cancer in your family.

  • Pingback: Weight, Breast Cancer, and Just World Theory | closetpuritan

  • http://www.menstruationresearch.org/blog Laura Wershler

    I totally agree about the mammography dilemma. It remains to be seen what SGK will do to move past their heavy emphasis on early detection and mammography screening, or if they will continue to trumpet these messages. As a women’s health critic, I think the push may end up coming from women themselves, who will start to rethink regular mammography screening.

    There are some clues on how to prevent breast cancer.

    Dr. Jerilynn Prior, endocrinologist and scientific director of the Centre for Menstrual Cycle and Ovulation Research (associated with the University of British Columbia http://www.cemcor.ubc.ca) has written a series of articles on the evidence supporting the premise that consistent, ovulatory menstruation protects women from breast cancer, heart disease and osteoporosis. Ovulatory disturbances are more common than is widely known in pre-menopausal women, and certainly more common during perimenopause.

    Women who experience symptoms of estrogen dominance – heavy bleeding, sore breasts for example – might benefit from cyclic progesterone use to counteract the cell proliferation caused by unopposed estrogen.

    You can read three of a series of articles on the importance of ovulatory menstruation to women’s health here:

    http://bit.ly/breasthealthovulation

    http://bit.ly/bonehealthovulation

    http://bit.ly/hearts-and-ovulation

    @laurawershler

NEW ON DISCOVER
OPEN
CITIZEN SCIENCE
ADVERTISEMENT

Discover's Newsletter

Sign up to get the latest science news delivered weekly right to your inbox!

The Crux

A collection of bright and big ideas about timely and important science from a community of experts.
ADVERTISEMENT

See More

ADVERTISEMENT
Collapse bottom bar
+

Login to your Account

X
E-mail address:
Password:
Remember me
Forgot your password?
No problem. Click here to have it e-mailed to you.

Not Registered Yet?

Register now for FREE. Registration only takes a few minutes to complete. Register now »