The real scandal: science denialism at Susan G. Komen for the Cure®

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Is breast cancer threatening your life? This Susan G. Komen for the Cure® ad leaves no doubt about who’s to blame —you are.

Over the last 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 intertubes quickly blamed the move on Komen’s new Vice-President of Public Policy, Karen Handel, a failed GOP candidate who ran for governor in Georgia on a platform that called for defunding Planned Parenthood.** Komen’s founder, Ambassador Nancy Brinker, awkwardly attempted to explain the decision, and yesterday, Handel resigned her position. (Whether she’ll receive a golden parachute remains unclear, but former CEO Hala Moddelmog received $277,864 in 2010, despite her resignation at the end of 2009.)

The Planned Parenthood debacle brought renewed attention to other controversies that have hounded Komen in 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 unmistakeable takeaway? It’s your fault if you die of cancer. 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, the deadly trait that’s necessary to 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 denialist message? They owe Moro an answer.

 

Footnotes:
*In fact, Komen has a long and cozy association with the Republican Party. George W. Bush rewarded founder Nancy Brinker’s generous donations to the GOP—more than $175,000 since 1990—by awarding her an ambassadorship to Hungary in 2001 and later, the position of chief protocol officer. The Komen board has a couple women of color and several democrats, but is predominately rich, white GOP donors.

**Apparently, some abortion foes think that eliminating Planned Parenthood would also abolish abortion. Will Saletan at Slate debunks this notion by explaining that the way to drive Planned Parenthood out of the abortion business is to give them more money.

***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.

Photos:

Race for the Cure banner by Ladybugbkt (via Flickr)

Fnck cancer by Michaelhyman300 (via Flickr)

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31 thoughts on “The real scandal: science denialism at Susan G. Komen for the Cure®

  1. Wow, Christie, this is a fabulous discussion. I have never read anything that more clearly explains the pros and cons of screening mammograms, not to mention giving the whole topic a substantial and passionate context.

    Do you think Komen’s role in advancing the false narrative is economically driven? That is, would their business model work less well if they promoted research on prevention (for example) instead of screenings? Do they have ties to the screening industry that drive this marketing strategy?

  2. My grandmother was diagnosed with breast cancer when she was in her fifties, and had a mastectomy. She was later diagnosed with a slow-growing tumor in her other breast, which was untreated, and she died – at 98, of old age.

  3. I finally came out of the closet, so to speak, regarding my feelings about Komen last week. I had not spoken up (outside of my circle of friends) as I somewhat feared backlash. Imagine my shock to receive 43 comments from people who feel the same way as I do!

    http://dinoiafamily.typepad.com/the_dinoia_family/2012/02/i-never-thought-id-blog.html

    Many of us have been angry with Komen for years; we are just happy now that the rest of the world is waking up to what their brand is really all about!

  4. This really was a great article and is a good example of how the public is regularly bilked into thinking that simplified science is always right. I hate to sound judgemental, but I can’t understand why anyone trusted those Komen people. The minute I saw the Red Sox in those ridiculous pink uniforms and Gap t-shirts masquerading as breast cancer donations, I knew something was horribly off with that group. Quite honestly the pink ribbon thing disgusted me.

    On a side note, I’d love to subscribe to this blog, but it does not work on my WP.com site and one of the volunteers said (to be blunt) that it was because you guys had settings you had to change. Any ideas?

    http://en.forums.wordpress.com/topic/i-cant-add-this-wp-page-to-my-add-blogs-section?replies=2#post-809009

  5. YES, YES, YES!! Thank you for this excellent piece & for quoting my dear, brilliant friend Rachel. This past Saturday, while we were waiting to find out the results of Rachel’s latest tests, while we hoped that her finally being moved out of ICU was a good sign, I blogged about Komen’s central hypocrisy myself. At the very least, you would think that Komen’s priorities would reflect the realities of Susan Komen herself, of the fact that she was diagnosed in her early thirties, an age years younger than the screening guidelines that Komen espouses; that mammography for younger women in particular is grossly ineffective; that her medical course was rife with mistakes made because of a lack of medical knowledge about the type and course of her particular cancer; that she died of metastases within a few years of diagnosis, with almost no options for effective treatment to slow or stop them. None of these realities has apparently informed Komen’s path or Komen’s leadership. Susan Komen’s sister Nancy continues to be one of the most publicly ill-informed spokespersons for breast cancer on the planet. And it galls me & has galled me since my own diagnosis. So I wrote about it this past Saturday. Again. Thinking of Rachel. And two days later, Rachel died.

    Komen has a lot to answer for.

  6. And then there are the terror marketing tactics…. the one where we, those with breast cancer dx, were turned into what amounted to a lottery ticket. I blogged about that and Rachel was the first one to comment. It was on January 20th and this was Rachel’s opinion:

    Great post here AM in wading through the subliminal tricks and slick marketing techniques we see all too often in the breast cancer universe. But I think you really hit it home in demanding honesty and transparency rather than playing on our fears. Some have interpreted my posts about Komen to mean that I’m anti-pink. No what I want to see is this honesty and transparency. Given the amount of money that is at stake, why should we expect anything less?

    We have discussed “billions of dollars and decades of research” and where are we today? Still pushing mammography….. I often wonder if 19 years of mammography starting at age 30 because I was/am “high risk” was a contributing factor to my breast cancer (which was invasive and the screening WAS the important thing)…..

    Rachel’s voice will be missed. She had a way of dissecting everything and sharing it with us. She had a wit and wisdom that made her uniquely able to summon the masses. We were making noise and Komen did us a BIG favor with this Planned Parenthood nonsense. There actions propelled the Pink Stink forward.

    As for Rachel, her shoes will never be filled—-even if 50 of us “bitchbloggers” attempted to climb in as a group. I didn’t expect to see you end the post with that sentence. Tears and being blinked back and I’m desperately trying to swallow the lump in my throat. Yes, the OWE Rachel an answer. And all of the others who are living with metastatic disease hoping, as Elizabeth Edwards said, that the research would catch up before the disease killed her.

    Thank you for this. The research has far to go. Too far after too long…

  7. This is the best piece I’ve read on this topic–clear, compact, and accurate. Critically important stuff…and proof that the general public deserves–and can understand–nuanced arguments. I’m circulating it, and hope others will as well.

    Ellen Ruppel Shell
    Professor and Co-Director
    Graduate Program in Science and Medical Journalism, Boston University

  8. I get so tired of the 98% survival statistic. So many people are comforted by it, but don’t have any idea what it really means. It sounds like such a success. If you are breathing, but barely alive at 5 yrs, you count. But for most of us, that might not be considered a huge medical success. I get so annoyed with Komen & others (including docs) who throw around feel-good stats without really explaining their meaning of success.

  9. Excellent post! I do some writing for the National Cancer Institute and we often discuss cancer screening issues. You did a great job of putting things into perspective in a clear, no-nonsense manner.

  10. I thoroughly appreciate this post! The clarity of the controversy over mammography makes much more sense. I really could not keep up with the media when it all hit the fan. And, to see more clearly the Komen Foundation’s misguided beliefs that go nowhere has been helpful. Thanks for posting this!

  11. This line summarizes exactly what I don’t like about Komen (and unfortunately far too many other similar foundations): “former CEO Hala Moddelmog received $277,864 in 2010, despite her resignation at the end of 2009.” That is more money than an R01 grant. How is that money best spent, on a lavish “golden parachute” for a former executive, or in a breast cancer research lab, looking “For the Cure”? I wonder how their fundraising would go if such expenditures were public knowledge…

  12. Excellent. Timely. Intelligent. Truthful.

    I sincerely hope people are finally pating attention to what so many of us have been saying for so long. We need to change the focus and the conversation about this disease.

  13. Thank you for this great article! As one who has been living with metastatic breast cancer for nearly 8 years, education and finding support networks have been empowering.
    I have not been impressed with the ethics of the local Komen affiliate due to multiple conflicts of interest, and their change of name to “the Cure” really pushed me over the edge to not being a Komen supporter with its implication that all bc is the same and will have one cure! Groups more friendly to stage IV bc include: National Breast Cancer Coalition, Metastatic Breast Cancer Network Metavivor, and Y-Me. Many don’t know that included in the Department of Defense budget is a line item for bc research. DOD is responsible for health care for active and retired military plus families of active duty military. In 2011, this was funded in the amount of $120 million. Those who write letters might see if their members of Congress have supported this and write to them thanking them for support or asking them to support if they have not. This program includes patient advocates at all levels of decision making regarding what grants receive funding.
    Something I have learned this past year is that research is hampered by the fact that most researchers spend about 60% if their time chasing funding! Many research sites work under competitive models which keep researchers from communicating with one another, which also slows things down.
    Again, thank you.
    For the roughly 40,000 a year who continue to die in the US of breast cancer in spite of early detection, and improved treatment.

  14. What a wonderful and intelligently written piece. Komen has been perpetuating their myths for quite some time now. People are finally starting to scrutinize the organization more, partly because of the questions my friend, Rachel Cheetam Moro, dared to ask. Thank you for asking them as well.

  15. That is spot on!
    You know though; it’s exactly the same with Cervical cancer too. Just cos you get regularly screened and get your HPV jab doesn’t mean you won’t get it.
    I was as proactive as could be and still ended up with a wierd cervical/endometrial hybrid cancer under 40 years of age :(.
    There needs to be damn cancer CURE; not a continuous blaming of the patient!

  16. I’d like to add something here. Autocorrect is seriously pissing me off. I can’t “edit” within these little boxes and when I go back and read some of my replies, I feel like an epic moron. From now on, I’m creating a macro to add to the bottom of everything I write…

    “If any of my words look like they don’t make sense, many thanks to autocorrect for trying to read my mind”

  17. Where is the education once women are “screened” and are “negative” of how to stay that way…..How about a serious prevention methododlogy around indoor air quality as we seal up our homes, the food we eat that is GMO tainted, the connection between new engineered foods and cancer? Where or where IS THE true education and why do we bash the folks that bring another idea to the marketplace?

  18. This article had lots of valuable information that I was not aware of, so thanks for that. Many of the same concerns about screening have come up with prostate cancer and the PSA test. Another good article about breast cancer becoming an industry was in the Washington Post today: http://www.washingtonpost.com/lifestyle/style/detailing-the-problems-of-breast-cancer-culture/2012/02/09/gIQA3DiT2Q_story.html.

    I don’t know enough about Komen to talk about motives. But at the risk of sounding like an apologist, I’d like to point out that communicating with the public about any science, including cancer, is a tall order. A campaign that says, “Get screened. It’s the key to saving your life,” may very well be oversimplified, but it’s a clear message. Contrast that with a campaign that says, “Well, there are 3 classes of breast cancer, and one of them doesn’t require screening at all, because most women who get these cancers will be fine. But that doesn’t mean don’t get screened. And in another category of cancers, screening will be too little, too late, most of the time. So screening won’t help you there, which stinks, but it’s the best we’ve got. So, it’s really only the third category in which screening does any good, but you can’t know ahead of time which category you’re in, so get screened. But it may not help you. But it might, so it’s really up to you to decide what to do.” Um, which one is an effective message?

  19. re: mammography
    i recently spoke to an M.D./breast cancer researcher working at a huge medical research center in the San Francsico Bay Area.
    This researcher was not from this country.
    She asked me if my mammography examinatiion was done using a film image or digital. My breast imaging exams are digital imaging.
    This doctor then said that in their country
    “…the Standard of Care is Digital imaging for everyone.”
    FFDM – Full Field Digital Mammography.
    We are in the dark ages.
    Breast Imaging is moving at ‘warp speed’ —
    Check out Tomosysthesis, and other imaging
    techniques. We are in the dark ages.
    A tiny tumor will be seen on FFDM early on.
    A tumor must be large to be seen on x-ray film mammography (the U.S. Standard of Care).
    Doctors never tell you if you have
    Dense Breast Tissue which means you would get one of these fancy-dancy far superior imaging techonologies right from the start of one’s start of mammogram exams. Remember, the fight is framed as getting or not getting an exam on the horrible, old x-ray film technology.
    The U.S. insurance companies, government, private U.S. companies lagging behind their world competitors, do not want to pay for the newer superior imaging machines available now.
    All the negative research about the failure of mammography refer to high radiation, x-ray film mammography. Large Med Center that have the new great machines keep it so very secret.
    Those who have money get this imaging upfront.
    The MRI machines have huge improvements–so
    check this all out for yourself as i did.
    You must research “breast imaging machines”–
    as i said at the beginning, the imaging is advancing very fast. Very expensive, but true early detection.
    I apologize for the poor grammer and the length of this comment–i would clean it up, but i have some work to do before i go to bed.
    To the Gatekeeper: there are those who will want to protect their power/viewpoint and not print this email. If you do not publish, I will not be surprised. Thanks for publishing the original story.

  20. This is one of the finest essays I’ve read about the “false narrative” and its use in selling wholesale screening to the masses. The advertising is shameful.

    You identify the three possible outcomes of population screening: 1) it finds a cancer than never needed finding, and you go from being a healthy person to a cancer survivor with a happy story to share; 2) the mammogram finds a cancer that’s the really bad kind, and you die anyway (but you’re in treatment longer); 3) You find a cancer that’s amenable to treatment and instead of dying like you would without treatment, your life is saved (e.g., you live longer).

    Outcome #3 only occurs about 15-20% of the time in women over 50. Not good odds. And, for Rachel Cheetham Moro it is far from a happy ending. Yes, Komen sure does owe Moro an explanation, though I doubt there will be one forthcoming.

    Thanks for this informative essay.

    Gayle Sulik

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