Friday, June 8, 2012

I Am Not An Anecdote

Whenever enemies of breast density awareness are faced with stories of women who have been harmed by lack of density notification, there are two words they reach for to discredit us. One of them is the hot button word "emotional." 

Leslie Moran, representing New York Health Plan Association (NYHPA) pulls it out here (fast fwd to 21:52)
 "Breast cancer is a very emotional issue. No one can deny that. But I think when legislating how things are covered we need to be able to put some of the emotion aside."
Notice the subtle straw man insertion "no one can deny that." Why, who would deny that a late-stage cancer survivor would be very emotional? Presto. I'm automatically discredited as a credible voice in this argument just because I have breast cancer. As if it's bad enough having a disease, suddenly anything I say is suspect. Because even I can't deny that having breast cancer is an emotional experience.

(What's funny about all this is that opponents of this bill are not exactly a bunch of Mr. Spocks. See  this three-page brawl debate with radiologists  in a radiology forum; registration required to view. One radiologist even called us "breast density nazis.")

But watch out, opponents of breast density notification, because when I and the other density advocates get emotional, this is what we look like:

(Image from Tumblr.)
The fact is that my film mammogram had only a 40% chance of detecting my breast cancer. To quote Ms. Moran, no one can deny that.

Another buzzword opponents of breast density notification keep handy is the word "anecdotal." Leslie Moran deploys both emotional and anecdotal in one sentence later in the same clip (fast forward to 22:39):
"We need to make sure that when we are talking about coverage of medical treatments that it makes the best medical sense, not the best legislative or emotional anecdotal sense."
 I almost feel sorry for Ms. Moran, because part of her job is to go on television and sound like a tool, and that can't be fun.

And to be fair, Moran was winging it. This legislation was barely on the insurance lobby's radar screen; they were counting on radiologists (ACR) and gynecologists (ACOG) to do the heavy lifting and kill it in committee, and suddenly the media drags the insurance lobby in for comment. They didn't have a prepared statement, so of course they hid behind ACOG's skirt letter of opposition, and then tap danced a little. Halfway through Moran's sentence she realizes she is not making sense at all (what could be wrong with a piece of legislation making legislative sense?) And that's when she pulls out the two-for-one, "emotional anecdotal."

A word about "anecdotal." It justifiably has a bad name in science but it's misapplied in this case. An anecdote is a dubious substitute for evidence, as in "I know a woman who ate twelve goji berries a day and her cancer disappeared."

But I am not an anecdote. 40,000 to 45,000 women in the US receive false negatives on mammograms every year (American Cancer Society). I'm just one example.  It's estimated that 10,000 women lose their lives every year from breast cancers that could have been treated at an earlier stage.

That's a lot of anecdotes.

But Ms. Moran has already won; the requirement for insurance coverage for additional screening was stripped from the bill last week despite documentation of a denial in coverage for a screening sonogram. Shame. However, the bill survives in its amputated form, and once the bill passes we can track whether insurers cover screening sonograms, and then come back to Albany and correct this if necessary. It's not ideal, but what's important is getting the notification bill across the finish line this month.

If it's any consolation, the bill now has one less deep-pocketed enemy.

I've heard that language has been tweaked in the bill to mollify Assembly Health Committee Chair Gottfried's concerns (without diluting the bill) so my fingers are crossed that the bill (now called S6769A/A9586C to reflect amendments) will get out of Gottfried's committee and onto the floor for a vote.


  1. Wonderful distinction between anecdotal and evidence. Marvelous!

    1. Thanks Harriet! I'm a poster child but I'm not an anecdote.

  2. This is not the context in which one wishes to hear the old paternalistic trope about women being too emotional and not understanding science.

    1. Yes and especially shocking when it's a sister making the argument!

    2. That's what I've been thinking all day. Shame on anyone for trotting out that old device - the women-are-too-emotional-to-be-rational argument - especially when talking about a cancer that overwhelmingly afflicts women.

  3. Excellent article. I don't understand the opposition. Is someone worrying about being sued for past misdiagnoses? Are mammogram manufacturer's worried they'll be less in demand? Are insurance companies worried they will have to pay more? (If the latter, why? Isn't early detection and treatment cheaper than later?) What's the point of opposing patients getting better screenings when there is reason to believe they need it?

    These issues do not make sense. You, Hallie, emotion and anecdotes included, make sense.

    1. Thanks Jeff. Legal ass-covering is part of it. Another part of it is an unwillingness to adapt a one-size-fits-all mammogram business model that works so well financially. (We're just the collateral damage.) Insurers reflexively oppose mandates period even if it makes financial sense as it would in this case.

    2. I suspect the insurance companies have done the numbers, Hallie and Jeff. I bet it's cheaper to treat 10,000 women each each year for later stage breast cancer (even though their chances of survival are much lower) than dish out the funds to provide additional screening for what is likely to be several hundred thousand women each year (I just shot that additional screening number out of my ass). The bottom line: additional screening will cut into profits. However, I didn't think about the lawsuits...

  4. I am now curious about the standard of care for breast density screenings in Canada and Europe, where the political climate around this type of issue must be pretty different. Anyone?

    1. Re Canada:

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  6. Ok, I know it's a hot-button piece of legislation. But strip away the politics, and there is a common-sense side to this:


    For the time-being, while the various special-interest groups are bickering and stall these bills, doctors should simply be EDUCATING their patients regardless.
    Susan-Komen style.
    (I know the Komen foundation itself is evil but I'm using their example of spreading the word with women which you have to admit is highly effective.)

    Pink buttons that say 'DENSE TISSUE' if you have to.

    When women know these things, they will request it from their doctors. If they don't their doctors SHOULD be educating them. If not, they shouldn't be doctors.

    It sucks right now that the insurance industry cannot be counted on to provide such an INCREDIBLY SIMPLE and INEXPENSIVE SERVICE as a sonogram, but isn't it better to KNOW and simply pay for it yourself, than to NOT know and suffer this?

    It's like if you own a car and your mechanic didn't tell you that you had to change the oil every 6 months. No one else is going to pay for it but you at least KNOW you have to do it or the engine will FAIL, right?

    Sonograms are thankfully not prohibitively expensive and are widely accessible.

    More women and voices will eventually put enormous pressure on the insurance industry to cover this service. But for the time being, forget all the Catch-22 politics and at least spread the word.

  7. Ross, the pink "dense tissue" buttons are a great idea. (How about dense tissue pocket facial tissue too?) Do you know about "Are You Dense?" It is a nonprofit that dedicated to informing the public about dense breast tissue and its significance for the early detection of breast cancer, so send any dollars there that you would have sent to Komen ( I have no financial connection to them.) They sell "exposing the secret" jewelry and last valentine's day sold chocolates in a pink box ("Do you know what's inside?) and are having a music fest in August in CT. That said, they're not cause-marketing-obsessed like Komen and more focused on plain patient education and advocacy. And that includes legislative advocacy.

    Re "doctors should simply be EDUCATING their patients regardless"--That's what this bill is about. Doctors (especially radiologists) have an interest in NOT informing patients about dense breast tissue. Physicians' groups are fighting tooth-and-nail for the right to continue *not* informing/educating their patients about density, and that's mainly what we're fighting (especially now that the insurance has been stripped from the bill--it's now an inform-only bill). We still hope to eventually get the insurance requirement in there for those who find even annual sonograms prohibitively expensive. (We want all socioeconomic groups to be protected.) In the meantime, advocates are also working very hard to get the word out in the media. We're starting to break through, so look out for some major media appearances soon. Also, now that people have soured on Komen, I am confident that this coming breast cancer awareness month the media and the public will be more receptive to the message that mammograms are not the be-all and end-all in breast cancer early detection, although they are part of it.

    1. And I also want to stress that there are some individual doctors who are informing their patients, but doctors are not required to so many don't. In my PBS interview I told the story about a woman who learned about dense breast tissue and to request a sonogram from Oprah. That's great, but patients should not have to rely on the media for medical information they should be getting from their doctors. Ultimately, there is just no substitute for honest physician/patient communication. That's why legislation is essential to advocacy efforts even as we do media and public outreach.