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.
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