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The Mammogram Post-Mortem

The Mammogram Post Mortem
Steve Novella whimsically opined on a recent phone call that irrationality must convey a survival advantage for humans. I’m afraid he has a point.
It’s much easier to scare people than to reassure them, and we have a difficult time with objectivity in the face of a good story. In fact, our brains seem to be hard wired for bias – and we’re great at drawing subtle inferences from interactions, and making our observations fit preconceived notions. A few of us try to fight that urge, and we call ourselves scientists.
Given this context of human frailty, it’s rather unsurprising that the recent USPSTF mammogram guidelines resulted in a national media meltdown of epic proportions. Just for fun, and because David Gorski nudged me towards this topic, I’m going to review some of the key reasons why the drama was both predictable and preventable.  (And for an excellent, and more detailed review of the science behind the kerfuffle, David’s recent SBM article is required reading. http://www.sciencebasedmedicine.org/?p=1926 )
Preamble
In an effort to increase early detection of breast cancer, American women have been encouraged to get annual screening mammograms starting at age 40. Even though mammograms aren’t as sensitive and specific as we’d like, they’re the best screening test we have – and so with all the caveats and vagaries associated with what I’d call a “messy test,” we somehow collectively agreed that it was worth it to do them.
Now, given the life-threatening nature of breast cancer, it’s only natural that advocacy groups and professional societies want to do everything in their power to save women from it. So of course they threw all their weight behind improving compliance with screening mammograms, and spent millions on educating women about the importance of the test. Because, after all, there is no good alternative.
However, the downside of an imprecise test is the false positive results that require (in some cases) invasive studies to refute them.  And so this leaves us with 2 value judgments:  how many women is it acceptable to harm (albeit it mildly to moderately) in order to save one life? Roughly, the answer is a maximum of 250 over 10 years (I came up with that number from the data here: http://www.sciencebasedmedicine.org/?p=565 if as many as half of women receive a “false alarm” mammogram over a period of 10 years of testing, and half of those undergo an unnecessary biopsy). And second: how many tests are we willing to do (this is more-or-less an economic question) to save 1 life? The answer is roughly 1900.
So when the USPSTF took a fresh look at the risks and benefits of mammography and recommended against screening average risk women between 40-50 (and reducing mammogram frequency to every other year for those over 50), what they were saying is that they would rather injure fewer women and do fewer costly tests for the trade off of saving fewer lives. In fact, their answer was that they were willing to perform 1300 mammograms to save 1 life, not 1900 (as has been our standard of care).
This value judgment is actually not, in and of itself, earth shattering or irresponsible. But it’s the societal context into which this judgment was released that made all the difference.
1. Timing Is Everything: Or, why not to bring a party hat to a funeral
First of all, it’s almost amusing how bad the timing of the USPSTF guidelines really were. The country was in the midst of trying to pass our country’s first serious healthcare reform bill in decades (at least, the house reform bill was being voted upon the week that the USPSTF guidelines were released) and opponents of the bill had already expressed vehement concern about arbitrary government rationing of healthcare services.
What worse time could there have been to announce that a government agency is (against the commonly held views of the rest of the medical establishment) recommending reduction in frequency  of a life-saving screening test for women? The fact that the guidelines leader said she hadn’t thought about the greater context when she scheduled the press release is quite astonishing. On the one hand, I suppose it shows how disconnected from potential political bias the workgroup really is. On the other hand, it is violates Public Relations 101 so completely as to call into question the judgment of those making… er… judgments.
2. You Can’t Replace Something With Nothing: Or How To Take Scissors From A Baby
Let’s just say for a moment that we all agree that mammograms aren’t the greatest screening test for breast cancer. They’re rather expensive, and wasteful perhaps one might even argue that in a healthcare system with limited resources, one healthy woman’s screening test is another woman’s insulin.  But – it’s all we have. And they do save lives… occasionally.
Anyone who’s seen a child pick up something harmful realizes that the only way to take it from them without tears is to replace it with something harmless. You can’t just take away mammograms from women who have come to expect it, without offering them something more sensible. If there is nothing, then I’m afraid that discontinuing them will result in considerable outrage which you may or may not wish to engage. Given the size and power of the breast lobby – I’d say it’s pretty much political suicide.
3. Know Your Opposition: Or Don’t Bring A Knife To A Gun Fight
And that brings me to point #3. The breast cancer movement is one of the most powerful and successful disease fighting machines in the history of medicine. And bravo to all the women and men who made it such a visible disease. The amount of funding, research, and PR that this cancer gets is astounding – it dwarfs many other worthy diseases (like pancreatic cancer or lymphoma), and is a force to be reckoned with.
Which is why, before you undermine a cherished tenet of such a group, you take a long hard look at what you’re going to say… Because it will be shouted from the hilltops, scrutinized from every conceivable angle, and used to rally all of Hollywood, the medical establishment, and everyone in Washington to its cause. Yeah, you better be darn sure you’re “right” (whatever that means in this context) before attempting to promote a service cut back to this group.
4. Know Who You Are: Or Unilateral Decision Making Is Not A Great Idea – Especially For Government
And finally, it’s important not only to know who you’re dealing with, but to know your mission in society so you can be maximally effective. The US government exists to honor the will of the people and serve its citizens. The best way to do that is to listen to them carefully, engage in consensus-building, and try to be a good steward of resources. When government behaves in ways counter to our expectations, it provokes some legitimate negativity.
So, for example, when a small group of civil servants hole themselves up in a room to create guidelines that will potentially take preventive health services away from women – resulting in a larger number of deaths each year… and they don’t invite input from key stakeholders, and announce their views in the midst of a firestorm about “rationing”
In summary
The new USPSTF guidelines for mammogram screenings debacle serves as a perfect public relations case study in what not to do in advancing healthcare reform. It was the perfect storm of high profile subject, bad timing, poor argument preparation, and lack of back up planning. Though we could have had a rational discussion about the cost/benefit analysis of this particular screening test, what we got instead was the appearance of a unilateral rationing decision by an out-of-touch government organization, devaluing women to the point of death. Throw that chum in the water of human frailty and you’ll get the same result every time: a media feeding frenzy that makes you regret the moment that guideline development became a twinkle in your task force eye.

Steve Novella whimsically opined on a recent phone call that irrationality must convey a survival advantage for humans. I’m afraid he has a point.

It’s much easier to scare people than to reassure them, and we have a difficult time with objectivity in the face of a good story. In fact, our brains seem to be hard wired for bias – and we’re great at drawing subtle inferences from interactions, and making our observations fit preconceived notions. A few of us try to fight that urge, and we call ourselves scientists.

Given this context of human frailty, it’s rather unsurprising that the recent USPSTF mammogram guidelines resulted in a national media meltdown of epic proportions. Just for fun, and because David Gorski nudged me towards this topic, I’m going to review some of the key reasons why the drama was both predictable and preventable.  (And for an excellent, and more detailed review of the science behind the kerfuffle, David’s recent SBM article is required reading.)

Preamble

In an effort to increase early detection of breast cancer, American women have been encouraged to get annual screening mammograms starting at age 40. Even though mammograms aren’t as sensitive and specific as we’d like, they’re the best screening test we have – and so with all the caveats and vagaries associated with what I’d call a “messy test,” we somehow collectively agreed that it was worth it to do them in this age group.

Now, given the life-threatening nature of breast cancer, it’s only natural that advocacy groups and professional societies want to do everything in their power to save women from it. So of course they threw all their weight behind improving compliance with screening mammograms, and spent millions on educating women about the importance of the test. Because, after all, there is no good alternative.

However, the downside of an imprecise test is the false positive results that require (in some cases) invasive studies to refute them.  And so this leaves us with 2 value judgments:

1. How many women is it acceptable to harm (with unnecessary biopsies) in order to save one life? Roughly, the answer is a maximum of 250 over 10 years (I came up with that number from the data here -  if as many as half of women receive a “false alarm” mammogram over a period of 10 years of testing, and half of those undergo an unnecessary biopsy).

2. How many tests are we willing to do (this is more-or-less an economic question) to save 1 life?  The answer is roughly 1900.

So when the USPSTF took a fresh look at the risks and benefits of mammography and recommended against screening average risk women between 40-50 (and reducing mammogram frequency to every other year for those over 50), what they were saying is that they would rather lose a few lives to save a vast number of injuries (unnecessary biopsies) and costly annual testing. In fact, their answer was that they were willing to perform 1300 mammograms to save 1 life, not 1900 (as has been our standard of care).

This value judgment is actually not, in and of itself, earth shattering or irresponsible. But it’s the societal context into which this judgment was released that made all the difference.

Timing Is Everything -Or – Why Not To Bring A Party Hat To A Funeral

First of all, the timing of the USPSTF guidelines couldn’t have been worse. The country was in the midst of trying to pass our first serious healthcare reform bill in decades (at least, the house reform bill was being voted upon the week that the USPSTF guidelines were released) and opponents of the bill had already expressed vehement concern about arbitrary government rationing of healthcare services.

Is there a more inopportune moment for a government agency to (against the commonly held views of the rest of the medical establishment) recommend reduction in frequency of a life-saving screening test for women? The fact that the vice chair of the USPSTF (Dr. Diana Petitti) said she hadn’t thought about the greater context when she scheduled the press release is quite astonishing. On the one hand, I suppose it shows that the workgroup wasn’t particularly politically biased. On the other hand, it violates Public Relations 101 so completely as to call into question the judgment of those making… er… judgments.

You Can’t Replace Something With Nothing -Or – How To Take Scissors From A Baby

Let’s just say for a moment that we all agree that mammograms aren’t the greatest screening test for breast cancer. They’re rather expensive, and wasteful. Perhaps one might even argue that in a healthcare system with limited resources, one healthy woman’s screening test is another woman’s insulin.  But – it’s all we have. And they do save lives… occasionally.

Anyone who’s seen a child pick up something harmful realizes that the only way to take it from them without tears is to replace it with something harmless. You can’t just take away mammograms from women who have come to expect it, without offering them something more sensible. If there is nothing, then I’m afraid that discontinuing them will result in considerable outrage which you may or may not wish to engage. Given the size and power of the breast cancer lobby – I’d say it’s pretty much political suicide. (And of course, after the USPSTF released their guidelines, HHS Secretary Kathleen Sebelius virtually denounced it, and congress moved immediately to create legislation to require health insurers to cover mammograms for women in their 40s-50s).

Know Your Opposition -Or- Don’t Bring A Knife To A Gun Fight

And that brings me to my next point. The breast cancer movement is one of the most powerful and successful disease fighting machines in the history of medicine. And bravo to all the women and men who made it such a visible disease. The amount of funding, research, and PR that this cancer gets is astounding – it dwarfs many other worthy diseases (like pancreatic cancer or lymphoma), and is a force to be reckoned with.

Which is why, before you undermine a cherished tenet of such a group, you take a long hard look at what you’re going to say… Because it will be shouted from the hilltops, scrutinized from every conceivable angle, and used to rally all of Hollywood, the medical establishment, and everyone in Washington to its cause. Yeah, you better be darn sure you’re “right” (whatever that means in this context) before attempting to promote a service cut back to this group.

Know Who You Are -Or- Unilateral Decision Making Is Not A Great Idea, Especially For Government

And finally, it’s important not only to know who you’re dealing with, but to know your mission in society so you can be maximally effective. The US government exists to honor the will of the people and serve its citizens. The best way to do that is to listen to them carefully, engage in consensus-building, and try to be a good steward of resources. When government behaves in ways counter to our expectations, it provokes legitimate negativity.

So, for example, when a small group of civil servants hole themselves up in a room to create guidelines that will potentially take preventive health services away from women – resulting in a larger number of deaths each year, they don’t invite input from key stakeholders, and then announce their views in the midst of a firestorm about “rationing,” you’re going to get nuclear level blowback.

Summary

The new USPSTF guidelines for mammogram screenings debacle serves as a perfect public relations case study in what not to do in advancing healthcare reform. It was the perfect storm of high profile subject, bad timing, poor argument preparation, and lack of back up planning. Though we could have had a rational discussion about the cost/benefit analysis of this particular screening test, what we got instead was the appearance of a unilateral rationing decision by an out-of-touch government organization, devaluing women to the point of death. Throw that chum in the water of human frailty and you’ll get the same result every time: a media feeding frenzy that makes you regret the moment that guideline development became a twinkle in your task-force eye.

Posted in: Cancer, Public Health, Science and the Media

Leave a Comment (15) ↓

15 thoughts on “The Mammogram Post-Mortem

  1. windriven says:

    Amen. Science often seems tone deaf when it comes to politics and public relations – to all of our detriment.

    As an aside – and with full knowledge that the costs of magnetic resonance imaging far outstrip those of standard mammography – from a purely diagnostic standpoint wouldn’t MRI offer a much higher confidence level? It would seem that the device cost isn’t the issue. Even a high end machine at, say, $3 million amortized over a seven year useful life is less than $100 per test (assuming 15 tests per day X 6 days per week X 50 weeks X 7 years). If (and here I speculate wildly) the diagnostic confidence with MRI was 10 times greater than mammography, might not the cost be comparable to mammography + all the unnecessary biopsies, yield far fewer false positives and save more lives?

  2. David Gorski says:

    Actually, MRI is very sensitive and its specificity is not adequate.

    Consequently, the problem is actually exacerbated with MRI, which picks up more lesions and even earlier lesions–and it’s over $1,000 a pop to do the test. That’s why MRI screening is currently only recommended for women estimated to have a greater than 20% lifetime risk of developing breast cancer.

  3. Harriet Hall says:

    The public response might have been better if the news had stressed that the new guidelines just bring the US into alignment with other countries. The news reports didn’t stress enough that the recommendations are for low risk women, and that risk factors still justify starting mammography at age 40, and that the decision should be left to the individual patient and doctor. They also misrepresented the recommendation against breast self-exam: we now know that teaching the formal BSE procedure to women does not reduce the death rate, but
    women are still encouraged to be aware of what their breasts normally feel like and to report any suspicious changes. (I love this because that’s exactly what I used to tell patients back when I was supposed to be teaching BSE.)

    It also might have been better if the public had any understanding of the risk/benefit considerations with any screening test. Perhaps it would help to present a hypothetical overkill screening scenario where every female got a mammogram every 3 months starting at puberty. Then they might realize that there is such a thing as too much screening and that it is complicated to decide how much is just enough.

  4. windriven says:

    “It also might have been better if the public had any understanding of the risk/benefit considerations with any screening test.”

    Sure it would. But that likelihood is vanishingly small.

    Look at the way even the most vital issues are marketed to and embraced by the American public: sound bites, bumper stickers, t-shirt slogans. And I don’t think I’m being cynical here. Straw men are erected in place of thoughtful analysis for a reason and it isn’t always to deceive.

    ‘Mammography is good because early detection saves lives’ is much easier to convey (and support) than a thoughtful discussion of the associated risk/benefit analysis which immediately would beget wide ranging opinions on the optimal risk/benefit balance.

    Perhaps there was no PR positive way to spin the change in recommended mammography frequency. It is too easy to demagogue it as rationing or a de facto death panel.

    Perhaps if the thrust had been: annual mammography leads to far too many painful, frightening and expensive biopsies among low risk women; see your doctor about the best mammography schedule for you. By default that would also have put the risk/benefit calculation in the hands of the two individuals best able to assess it.

  5. Zoe237 says:

    This is fascinating to me. There were probably five letters to the editor in my local paper, including one from the mammography expert at our local hospital. That is a tremendous amount for a topic such as this, and all against the new guidelines. People are beyond ticked. And the $1300 vs. $1900 for every life saved doesn’t make any intuitive sense, because the public (and many many doctors) don’t understand the risk of unnecessary tests and the interventions they can lead to. The hubbub was similar (not nearly as extensive though) when the USPTFS came out against routine ultrasound for low risk women.

  6. David Gorski says:

    There’s also a major element of turf protection going on here. For instance, my professional organization, the American Society of Breast Surgeons, immediately circled the wagons and implied that the guidelines would move us back to “pre-mammogram” days, which is utter poppycock. I wrote a strongly worded protest when I received that press release.

    However, that was nothing compared to the American College of Radiology, which has been like a pit bull protecting its turf. In fact, I’m half tempted to blog about it for Monday, although I might get myself into too much trouble by being too blunt. :-)

  7. Tom S says:

    Basically all the news outlets, in reporting on this story, have included at least one interview with a breast cancer survivor who says something like “I was 43 when a mammogram found my cancer, and that’s why I’m here today.” These women deserve hearty congratulations, of course, but it’s like publishing quotes from those who happen to WIN the lottery. We don’t hear from those women whose mammograms led them to needless biopsies, etc.

    And as to the matter of letting the woman and her doctor choose the best mammogram schedule: call it “rationing” if you want, but it is inevitable that the person or organization paying for it has to have a voice in this discussion.

  8. Harriet Hall says:

    Some of those women who testify that mammography saved their lives are probably mistaken. Some of them were diagnosed with cancers that would not have progressed; some may even be false diagnoses. Some of them would have developed a lump and sought treatment a little later without changing the final outcome.

  9. IndianaFran says:

    Dr Jones:
    Just to clarify, the USPSTF is not “a small group of civil servants holed up in a room”, in fact it is “the leading independent panel of private-sector experts in prevention and primary care”.

    http://www.ahrq.gov/clinic/uspstfab.htm

    Dr Gorski:
    I greatly admire your willingness to acknowledge that the medical professions are not immune to turf wars and sometimes less than rational responses to new findings (or the revisting of old ones).
    Thank you.

    From a consumer standpoint, I think the next question is to expand on the “somehow” alluded to above:
    “we somehow collectively agreed that it was worth it to do them in this age group.” What factors originally led the US opinion leaders to set guidelines that differed from those in the rest of the civilized world?

  10. David Gorski says:

    What factors originally led the US opinion leaders to set guidelines that differed from those in the rest of the civilized world?

    A combination of excessive faith in screening as the tool to reduce breast cancer mortality plus politics. None of this is new; the NCI has tried to issue guidelines not unlike the USPSTF guidelines before, to be met with much the same demagoguery as the USPSTF is being met with now:

    http://www.medpagetoday.com/HematologyOncology/BreastCancer/17127
    http://www.washingtonpost.com/wp-dyn/content/article/2009/11/17/AR2009111704197.html
    http://www.nytimes.com/2009/11/20/opinion/20aronowitz.html

    The science hasn’t really changed much in 12 years; if anything, the potential harms of routine mammographic screening of average risk women between the ages of 40-49 have accumulated more evidence.

  11. pmoran says:

    “What factors originally led the US opinion leaders to set guidelines that differed from those in the rest of the civilized world”

    The rest of the world (where I live and once practiced) also had more centralized systems than America, able to more ruthlessly ask themselves “where is the money best spent?”.

    There were also still some gaps in the information available and a sheer guess had to be made as to how early after inception a breast cancer has to be discovered to make a cost/effective difference.

    Through a combination of these factors, yearly mammography, and if anything MORE intensive attention to the 40-50 age groups (where breast cancer rates are increasing, but picking them up is more difficult) seemed reasonable approaches.

  12. geridoc says:

    Fascinating discussion. One problem that is often not considered is the very real role emotions play in medical decision making. For example, when a patient goes through a cancer scare after a false positive screening test, the dominant feelling may be relief they do not have cancer. They may forget that their whole experience was precipitated by a test that in the end did them more harm than good. Additional discussion of this issue can be found here:

    http://www.geripal.org/2009/12/overwhelming-relief.html

  13. rosemary says:

    I haven’t followed the uproar although it didn’t surprise me. I expected it. My guess is that it is a cultural thing. Americans really can’t believe that you can’t make life risk free and buy whatever you want and they can’t comprehend that technology is fallible so that there are risks no matter what you do, risks that have to be weighed rationally with the best currently available evidence. Doing that is most likely going to help most people but certainly there will be individual exceptions. Being the exception is the part most Americans simply can’t handle emotionally. I have an opinion on the reason for that too but won’t bother you with it here.

    Background. I’m 67 yo. Had breast CA at the age of 42. No one else in my family has ever had any kind of cancer. I saw one of my cats getting ready to jump into my bed one night. Since she’d land on my breasts, I covered them with my arm cupping my rt. breast with my hand and feeling a lump. I couldn’t see anything, but I could move it which told me it was unattached to the chest wall.

    I went to an internist. Told him where the lump was, watched his face and said, “You don’t feel it.” He said he didn’t. I put a finger on either side, told him to feel in the middle. He did and felt it. He sent me to a surgeon who felt it, did a needle biopsy which came back positive. I had a mammogram which didn’t show the lump. The doctors were very upset at that point sure I was going to die. The surgeon wanted to do a mastectomy. I refused. The major study showing that lumpectomies followed by radiation are as effective as mastectomies for early stage cancers had just come out. That was enough for me, but the surgeon wouldn’t feel comfortable until it had been replicated or at least passed the test of time.

    I was treated with a lumpectomy followed by radiation therapy. The oncologist and I decided it was stage 1, by size it was on the cusp between stage 1 & 2. The surgeon believed that finding the lump when I did saved my life. I have no opinion about that but believe that as a matter of public policy the recommendations that have just come out are correct. Of course, the only conclusion I expect anyone to draw from this is that you have heard from one person whose life may have been saved by early detection who doesn’t agree that that means that mammograms and breast self examination for younger women without risk factors are the best or even the most rational policy for everyone.

  14. JMB says:

    If you want to adhere to science based medicine, it should be devoid of value judgments (other than that death or loss of function is bad). Scientific observations can lead you to the most ‘effective’ screening strategy to reduce mortality. According to the USPSTF, the most effective screening strategy is annual mammography from age 40 to 79. If you introduce a value judgment, screening mammography results produce anxiety and discomfort, you can then calculate the most efficient strategy, reducing the harm while maintaining most of the benefit (20% less reduction in breast cancer mortality). You can search the supporting evidence articles included on the USPSTF website for its recommendations on mammogram screening (Nov 09 update) and colon cancer screening (Oct 08) to see how the USPSTF defines effective and efficient strategies.

    If you really want to be scientific about it, then you should understand the difference between scientific observation and decision analysis. If the decision analysis sticks to Bayes theorem, or stochastic simulation, it is still based solely on scientific observation. If you introduce a value judgment for a utility function in decision analysis, you have now stepped into economics (search for efficient frontier on the web… Nobel prize in economics). The science of the USPSTF was not criticized by the ACR or the ACS. It was the decision analysis incorporating a value judgment normally deferred to the patient. That is why science cannot lead you to decide why 1 in 1900 lives saved is not recommended, but saving 1 in 1300 lives is recommended. Only the declining slope of the efficient frontier graphs would lead to that distinction.

    A value judgment made by a scientist is still a value judgment.

    By the way, if mammography was so profitable, you would not have seen the steep decline in the number of mammography facilities and mobile mammogram units so evident in the last 15 years. Mammography was specifically excluded from the relative value scale used in medicare and most insurance reimbursement. The cost set by medicare was the cost advocated by mammographers 15 years ago to convince women to have it done ($65). When it became harder for women to find a facility still open, the cost for non medicare screening exams crept up. The only turf battle in breast cancer screening is over biopsies, which pay better.

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