The trouble with Komen: Misusing statistics/Generating false hope

This article was edited since its original publication.


It is now widely known that the benefits of wholesale mammography screening were overpromised. Rates of overdiagnosis (i.e., when a diagnosed tumor lacks the potential to progress to a clinical stage, or is so slow-growing that the person would die from other causes) are higher than previously realized. We still do not know what causes breast cancer, how to prevent it, or why it recurs. The breast cancer that kills (i.e., metastatic) continues to strike hundreds of thousands of breast cancer “survivors” in the United States and, with bleak prognoses, more of them die each year. Rather than acknowledging what science has confirmed about breast cancer’s complexity, and what it has revealed about what is yet unknown (including why at least 70 percent of those screened do not have their lives saved as a result of that screening), groups like Komen divert public attention to an array of simple solutions.

Consider Komen’s 2011 “Less Talk. More Action” program and schedule of events. 

October 1

Susan G. Komen founder and CEO, Ambassdor Nancy G. Brinker, kicks off Breast Cancer Awareness Month with a special video message encouraging you to take action. View video.

October 2

The Dallas Cowboys will be honoring breast cancer survivors at Cowboys Stadium as Amb. Nancy G. Brinker does the coin toss in the game against Detroit. Check out the following new videos as Cowboys pledge to take action if the women in their lives get screened for Breast Cancer. Video Coming Soon!

October 3

Talk to your employer about participating in the Susan G. Komen Promise Action Campaign. Major
corporations can pledge what they’ll do to encourage employees to get screened. Learn more.

October 4

Take a moment today to tell us what you would have missed if you (or someone you loved) didn’t get screened for breast cancer in time. Your story could help urge other women to get screened. Start sharing.

October 5

Feeling hungry? Learn more about “Mike’s Way to a Cure Day” at Jersey Mike’s

. . . .

Komen’s 31 days of action can be boiled down into two things: get screened and support our sponsors.

As Journalist Christie Aschwanden has pointed out, one of the real scandals at Susan G. Komen for the Cure is “Science Denialism” and the fairytale 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. In reality some tumors are aggressive, and others are not; some will spread regardless of treatment, and others are not likely to spread in a lifetime; and “early detection” is a misnomer when breast cancer can recur ten or fifteen years after diagnosis regardless of initial staging. The selling of wholesale screening, along with accompanying lifestyle and product placements, replaces well-grounded hope with misleading hype.

Professors Steven Woloshin, MD, and Lisa M. Schwartz, MD, of the Department of Veterans Affairs Medical Center and the Dartmouth Institute for Health Policy and Clinical Practice, published an essay in British Medical Joural (BMJ) [2012;345:e5132] that also criticized Komen for exaggerating and distorting medical information in its 2011 advertising campaigns.

Here is the Press Release:

Breast cancer charity under fire for overstating the benefits of screening

Thursday, August 2, 2012 – 10:35

Experts challenge “pink ribbon” creator for misusing statistics to generate false hope

The world’s largest breast cancer charity comes under fire from experts today for using misleading statistics to persuade women to undergo mammography.

Professors Lisa Schwartz and Steven Woloshin of the Center for Medicine and the Media at The Dartmouth Institute for Health Policy and Clinical Practice argue that last year’s breast cancer awareness month campaign by Susan G Komen for the Cure “overstates the benefit of mammography and ignores harms altogether.”

Their views are published on bmj.com today as part of an occasional series highlighting the exaggerations, distortions, and selective reporting that make some news stories, advertising, and medical journal articles “not so.”

A growing and increasingly accepted body of evidence shows that although screening may reduce a woman’s chance of dying from breast cancer by a small amount, it also causes major harms, say the authors. Yet Komen’s public advertising campaign gives women no sense that screening is a close call.

Instead it states that the key to surviving breast cancer is for women to get screened because “early detection saves lives. The 5-year survival rate for breast cancer when caught early is 98%. When it’s not? 23%.”

This benefit of mammography looks so big that it is hard to imagine why any woman would forgo screening. But the authors explain that comparing survival between screened and unscreened women is “hopelessly biased.”

For example, imagine a group of 100 women who received diagnoses of breast cancer because they felt a breast lump at age 67, all of whom die at age 70. Five year survival for this group is 0%. Now imagine the women were screened, given their diagnosis three years earlier, at age 64, but still die at age 70. Five year survival is now 100%, even though no one lived a second longer.

Overdiagnosis (the detection of cancers that will not kill or even cause symptoms during a patient’s lifetime) also distorts survival statistics because the numbers now include people who have a diagnosis of cancer but who, by definition, survive the cancer, the authors add.

“If there were an Oscar for misleading statistics, using survival statistics to judge the benefit of screening would win a lifetime achievement award hands down,” they write.

But that doesn’t stop people from misinterpreting survival statistics. Disturbingly, in a recent survey, the authors found that most US primary care doctors also mistakenly interpret improved survival as evidence that screening saves lives.

Mammography certainly sounds better when stated in terms of improving five year survival – from 23% to 98%, a difference of 75 percentage points, they say. But in terms of its actual benefit, mammography can reduce the chance that a woman in her 50s will die from breast cancer over the next 10 years from 0.53% to 0.46%, a difference of 0.07 percentage points.

The Komen advertisement also ignores the harms of screening, they add. For every life saved by mammography, around two to 10 women are overdiagnosed. These women cannot benefit from unnecessary chemotherapy, radiation, or surgery. All they do experience is harm.

“Women need much more than marketing slogans about screening: they need – and deserve – the facts,” conclude the authors. “The Komen advertisement campaign failed to provide the facts. Worse, it undermined decision making by misusing statistics to generate false hope about the benefit of mammography screening. That kind of behaviour is not very charitable.”

Contact:

To contact the authors, please call Annmarie Christensen, The Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, New Hampshire, USA annmarie.christensen@dartmouth.edu

###

The late Rachel Cheetham Moro wrote considerably about the oddities and the failings of breast cancer culture on her blog The Cancer Culture Chronicles, and particularly those of the leading breast cancer charity, Komen. In a review of Komen’s October Awareness Activities that pointed to the real flaws of its fundraising/awareness-focused screening agenda, Rachel pointedly asked:

“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?”

Today would have been Rachel’s 42nd birthday. She died of metastatic breast cancer on February 6, 2012.

###



Update: CNN, ABC, and FOX News cover the story on August 3, 2012. Fox ends the article with “Pass it on: Getting mammograms decreases mortality.” Exaggeration and distortion through omission.



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16 comments to The trouble with Komen: Misusing statistics/Generating false hope

  • Ugh this is so frustrating. Komen lays all of the responsibility on individual women and none on society. Where is the research? What about environmental factors? What about access to care — how do they influence health? If Komen was your main source of breast cancer awareness, you wouldn’t think any of these influence health.
    Dangerous.

  • Thank you thank you thank you, Gayle.

    Katie

  • YAY…
    So glad you wrote this…. I’m so screwed up right now for a few personal reasons but I blogged about this today…. I’m going to add a note to come over here for the whole story…..
    I’m with Katie… thankyouthankyouthankyou..
    AnneMarie

  • People are listening. THIS MATTERS.

  • Mary

    I can really relate to this, Gayle! Regular mammograms missed both my cancers. Hmmmmm, wonder if it is still my fault that the first was larger and more aggressive. Mammography didn’t work for me. I had to let my fingers do the walking and talking. What we need are better imaging techniques and less blaming the victim. Wonder how much Komen money goes into those misleading campaigns when, it could be put to better purposes? How about more money for research into the cause and cure of BC.

  • Gayle – thank you for this and all of your posts. Sorting out the truth is important for everyone.

  • Lisa Valentine

    Excellent information throughout this post. Slowly but surely more people are seeing through the smoke and mirrors of the big business of breast cancer awareness and treatment. Continuing to tout the benefits of mammography has kept us from moving forward to find better, more consistent imaging techniques. Mammography is only part of the picture, and yes it helps some, but it is not the end all. Add me to the list of breast cancer patients who had a normal mammogram, but thanks to my primary care physician and a radiologist, both aware of my family history and dense breast tissue, recommended an MRI. That MRI found my invasive tumor. As Dr. Attai states, sorting out the truth is so important. Thanks for providing such an effective forum to do that. Thanks Gayle!

  • Gayle,

    Keep on with the truth telling and the sorting out. Getting people to listen sometimes feels tedious and repetitive, but I know we can all count on your voice and your perseverance. Thank you for that.

  • What an outrage, Gayle! Komen just won’t quit with all its wizardry regarding mammography statistics. The sad thing is so many people look up to Komen and defend them to the hilt. Good for you for exposing their true self. xx

  • Deb Ragosta

    NO…NO…NO! I had my first screening mammogram in 1990. at age 35. That mammogram showed what turned out to be stage 1 breast cancer. I was “cured” for just short of 20 years when an injury to my back showed mets up and down my spine. I did have early screening and NO it did not prevent me from getting metastatic breast cancer that will kill me (unless something else gets me first.) I was on the Komen bandwagon for many years until I realized they give only 2 to 3% of what the raise to metastatic breast cancer research. Early screening does not prevent deaths from breast cancer, but actually finding THE CURE will. Komen collects billions in the name of the cure. What cure? Maybe I am missing something other that the 4 young women I knew personally who have passed away since January – 3 in their 40s with young children and one at age 35.

  • Great post. The volume of misinformation in the media can be staggering. I was getting screened every six months and still got diagnosed with Stage IIIa breast cancer last year. I’m living proof that mammograms do not necessarily always detect it ‘early’. It’s certainly is NOT my ‘fault’ for ‘letting things go’ – I did everything I was supposed to do and still landed on the slippery slope above Stage IV. And I’m tired of people acting like surgery/chemo/radiation is a ‘cure’, when it’s just a treatment – JUST A TREATMENT. THERE IS NO CURE YET. Ugh.

  • KOB

    In the same vein, many people and awareness campaigns quote the “1 in 8″ statistic out of context as noted here:

    http://www.healthnewsreview.org/2011/09/with-best-wishes-for-andrea-mitchell-some-criticisms-of-her-message/

    As the National Cancer Institute explains thoroughly on its website:

    Women born now have an average risk of 12.2 percent (often expressed as “1 in 8″) of being diagnosed with breast cancer at some time in their lives. On the other hand, the chance that they will never have breast cancer is 87.8 percent (expressed as “7 in 8″).

    But that is a LIFETIME risk. Risk increases with age, so the NCI provides a more helpful way of looking at it – for all of those women watching who are of different ages:

    A woman’s chance of being diagnosed with breast cancer is:

    from age 30 through age 39 . . . . . . 0.43 percent (often expressed as “1 in 233″)
    from age 40 through age 49 . . . . . . 1.45 percent (often expressed as “1 in 69″)
    from age 50 through age 59 . . . . . . 2.38 percent (often expressed as “1 in 42″)
    from age 60 through age 69 . . . . . . 3.45 percent (often expressed as “1 in 29″)
    Do you see how misleading the “1 in 8″ can be?

  • Judy Berman

    Everyone is talking about mammograms, but what about a yearly pap test and internal exam by your gynecologist also. I would be dead right now if mine hadn’t found a tumor on my ovary, gave me an internal ultra sound and within 6 weeks I had an ouferectomy. I know this isn’t breast cancer but it was fast growing from the size of a lemon to an orange in six weeks. My maternal aunt is going through metastatic breast cancer for over 20 years now. She has been through hell and back both physically and mentally and she did “all the right things”. I agree that environment has a lot to do with breast cancer, but where are those statistics? Even break in down farther to where “baby boomers” grew up. All the air pollution controls were not around in the 40′s, 50′s and even 60′s. Big cities versus small less polluted ones.
    I could go on, but this is about breast cancer which I am terrified I will get even with self-examination and the new digital mammography I have had for the past five years.

  • Thank you all for your comments. Mammography is indeed only part of the picture, but it would be very difficult to know this from many promotional campaigns. Komen sets a standard but is not alone in distorting information. Katherine is right on to bring up that famed 1 in 8 statistic that is another oft-cited but decontextualized sound bite used to strike fear in women. As Judy also points out, the hype around breast cancer marginalizes information about other important women’s health issues. The overabundance of pink soundbites suggests that this is the ONLY health issue women need think about. Many thanks for sharing here and out in the world. — Gayle Sulik

  • Gayle, This ad campaign angers me tremendously. I recently posted about an encounter I had with a breast cancer widower. He was very careful to include in his story that his wife’s cancer was caught early and they “did everything, but it still came back.” Komen’s mammograms-save-lives chicanery puts this man in the position of defending his wife’s death as not their fault — an unjust burden on somebody in grief.

    I wish instead that Komen would stop misleading with statistics and invest in real science –– real prevention, humane and effective treatments, real cures.

    CB

  • Wow again thank you Gayle for exposing Komen for a ridiculous campaign. Both times my breast cancer was not detected by a mammogram. These misleading statistics are an insult to anyone who has had breast cancer and to those with MBC. It especially insults our friends who have died from breast cancer. The list of wrongdoing on the part of Komen just keeps growing and we are going to have to undo so much damage so we can truly put an end to this awful disease.

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