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Reports

Mammogram Backlash Is About Mistrust

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Posted on Nov 25, 2009

By Ellen Goodman

Is there such a thing as communications malpractice? If so, we might consider the case of Women v. the U.S. Preventive Services Task Force.

I’m not talking about medical malpractice. The scientists who surveyed the mammogram studies did their job honorably. They looked at research that has slowly and without a lot of fanfare questioned the value of routine mammograms for women in their 40s without other risk factors. They concluded—as had others before them—that the benefits from screening younger women were oversold and the risks were undersold.

They went on to recommend that women start having mammograms at 50 and then have them every other year instead of annually. But then they dropped these guidelines onto an unprepared public like leaflets from a helicopter of experts who didn’t understand the conditions on the ground.

There was something charming about the innocence of the independent task force. Did the scientists assume the public would just accept the information as given? Or, should I say, as revised? Anyone who has spent time in a waiting room with women taught to equate early detection with prevention could have warned them.

Within hours, stories poured in from women who deeply believe “my life was saved” by an early mammogram. Then came suspicions about what new guidelines would mean to their insurance providers. Women recoiled as well from an analysis that listed “anxiety” as a risk component of early mammograms—as if they couldn’t handle a little A in preference to a big C.

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If the experts didn’t realize how women would react, they were truly disconnected from the poisonous political atmosphere around health care reform. Quickly and deliberately, politicians turned “recommendations” into “rationing.” As Rep. Marsha Blackburn, R-Tenn., darkly warned, “This is how rationing begins. This is when you start getting a bureaucrat between you and your physician.”

Not surprisingly, the Obama administration backed away from the recommendations as fast as Kathleen Sebelius could say, “This panel was appointed by the prior administration.”

In fairness, the independent body of experts was charged with keeping science away from politics. And it wasn’t allowed to consider costs. But the end result was a kind of tone-deaf naivete.

As the task force’s Dr. Diane Petitti said with classic understatement, “We probably, in retrospect, could have been more clear.”

What the scientists did, says Carnegie Mellon’s Baruch Fischhoff, who studies the fine art of risk communication, “is give an external view of what’s true at the population level.” In other words, they told the statistical story from up high.

“What people want is an internal view—what does this mean for my life?” Fischhoff said. “They [the scientists] were off in their own world.”

This was never going to be an easy message. The breast cancer research is more complex and controversial than the cervical cancer research that was released just days later with recommendations to delay and reduce Pap smears. But nevertheless, this perfect storm created a perfect case on how not to deliver a public health message.

It’s important because—and I say this as someone whose mother, aunt and sister have all had breast cancer—the task force had a strong story to tell. The benefits of mammography for younger women have been oversold. As Laura Nikolaides of the National Breast Cancer Coalition, and a cancer survivor, says, “People have been doing mammography as a security blanket: If you have a mammogram, you won’t die of breast cancer. We wish that were true.” The biology of the tumor—how aggressively it grows—is now judged more important than the size at which it was discovered. And the terrible reality is that we haven’t done much to change the survival rate of younger women who get this disease.

It’s important also because we all have a stake in evidence-based medicine—what’s the alternative?—and have to accept that he evidence keeps changing. This is not true just for mammograms and Pap smears. We’ve learned the downside of screening older men for prostate cancer. And we keep revising advice on everything from virtual colonoscopies to bone marrow treatment for breast cancer.

No one wants scientists who bow to politics or trim research to provide false comfort. But facts do not speak for themselves. They need to be delivered by people who can listen, frame a message and prepare the ground.

So now we have a cost-benefit analysis for medical miscommunication. The evidence so far points to a backlash of mistrust. Memo to the next panel: Remember the old Hippocratic oath, first do no harm.
   
Ellen Goodman’s e-mail address is ellengoodman1(at)me.com.
   
© 2009, Washington Post Writers Group


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Anarcissie's avatar

By Anarcissie, November 28, 2009 at 7:14 pm Link to this comment

In addition to the important problems which Jane lists, there is the fact that the medical industry is a closed, authoritarian system—a system which is largely impervious to public scrutiny and criticism for that reason.  There is no reason to trust it.  Learn what you can about health and make your own decisions.

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By lexicron, November 28, 2009 at 3:23 pm Link to this comment

For years, women have been told to do self-exams, as well as mammograms. Now, suddenly, we’ve got NOTHING, if this panel’s recommendations are adopted by insurers and MDs.

When public policy makes a sudden 180, we’ve got a right to be upset. Yet we’re all too eager to turn medical recommendations into absolutes, in this country. As Goodman shows, the mammogram issue has been around for quite a while, and some of us opted out of the annual exam until later in life. Similarly, studies now indicate that other “lifesaving” medical interventions, such as angioplasty, may not be helpful.

Advice reversals happen all the time, and it’s frustrating for a society that’s invested in getting clear answers to all problems. That’s not how medical science works, however. Perhaps we should rename it medical “arts.”

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By liecatcher, November 28, 2009 at 1:10 pm Link to this comment

jane, November 28 at 4:23 pm #
(Unregistered commenter)

You are surprised at the lack of trust in women in a
very misogynistic society??
We all know that doctors and the government are not
only in each others pockets
but that most of them are men. A society that argues
endlessly about outlawing
abortion, and refusing to fill prescriptions for
birth control pills at the same time
covers the cost of viagra by most health insurance
companies.

Hey Jane:
I’m not surprised at all. I remember when “OUR
BODIES, OURSELVES” was a best seller & women fought
back. La leche league encouraged breast feeding &
truth meant something. Think of the out pouring of
emotions when Oprah announced her retirement just 2
days before the tenth anniversary of 9/11. Let’s
encourage women to stop wasting their lives sitting
in front of the greatest brainwashing tool ever
invented & start helping themselves. A good beginning
would be to wear comfortable shoes, stop consuming
toxic chemicals like alcohol, tobacco, & caffeine.
And for God’s sake stop texting & farding while
driving.

Report this

By jane, November 28, 2009 at 12:23 pm Link to this comment
(Unregistered commenter)

You are surprised at the lack of trust in women in a very misogynistic society??
We all know that doctors and the government are not only in each others pockets
but that most of them are men. A society that argues endlessly about outlawing
abortion, and refusing to fill prescriptions for birth control pills at the same time
covers the cost of viagra by most health insurance companies.  A society that says
that pregnancy is a pre existing condition and offers little in the way of pre-
school for children while cutting public education. A society that allows doctors to
yell at and berate women for having a miscarriage. A society that provides no
support for women who work, but then requires mothers to work. A society that
does everything to keep labor unions from existing and pays women workers only
a percentage of what it would pay a man. A society that screams against abortion
but supports the male form of abortion, abandonment. You’re surprised?!?!

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By liecatcher, November 27, 2009 at 11:12 pm Link to this comment

Mammogram Backlash Is About Mistrust
Posted on Nov 25, 2009
By Ellen Goodman

Hey Ellen Goodman:

Now that you’ve looked at mammograms under the
microscope,

it’s time to look through the macroscope. What you’ll
see is

misogyny. Depending on the culture, you’ll find
everything from

blatant slavery, forced clitorectomies, clothing
restrictions, starvation

if sex is refused, &, in the good old USA, where
Mammon rules,

a relentless brainwashing campaign to convince women
that without:

botox, designer vaginas, breast augmentation,
liposuction, various

stomach reduction & other surgical procedures,
happiness will

elude them. However, the most odious, objectionable &
pathogenic

findings will

be the theme that God made lots of mistakes when
woman was

created. Therefore, infant formula is better than
mother’s milk.

C-sections are preferred over vaginal deliveries.
Hospital birthing

is good, home deliveries are bad,  midwives just
can’t compare

to obstetricians, stirrups, episiotomies,induced
labor & scheduled

deliveries. So don’t even think about natural
childbirth or the

Chinese peasants who, for millennia, used gravity to
facilitate

delivery without being cut or drugged, and whose
newborn

didn’t have to be spanked to jump-start breathing, &
who waited

several minutes until the heart/lungs transitioned
from an

amniotic to an air evironment before cutting the
umbilical cord so

the newborn’s brain received optimum oxygen. In fact,
don’t

think at all, just follow MIPIC guidelines & just
“trust us”.

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By Jackie, November 27, 2009 at 1:02 pm Link to this comment
(Unregistered commenter)

I’d say the problems are fear and ignorance. Of course we can’t trust insurance
based health care or our elected representatives so we have to trust and educate
ourselves, and we have to recognize and deal with the enormous fear that seems
to have overtaken almost everyone. Just reacting negatively isn’t going to help.
Have we become just a bunch of victims?
We need to question not only diagnostic practices but the treatment options
available to us. This report confirms what any thinking individual could have
already thought about. Why suspect scientists of trying to contain costs more than
doctors trying to expand them? We have become too accustomed to believing so-
called experts, accepting and doing what the doctor says, and wanting ‘a pill’ to
fix everything, instead of thinking about and taking responsibility for our own
lives. A shift in our attitudes about life, and death, are sorely needed.

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By liecatcher, November 27, 2009 at 12:47 am Link to this comment

Mammogram Backlash Is About Mistrust
Posted on Nov 25, 2009
By Ellen Goodman

Hey Ellen Goodman:

Now please Google “mammograms cause cancer” & educate
yourself. Then rewrite your article with a new title:

“Mammogram Backlash Is About Money & MIPIC”

MIPIC,MEDICAL INSURANCE PHARMACEUTICAL INDUSTRIAL
CONSPIRACY, wants fear & not facts to determine
decisions. And in your rewrite, please include the
women who had double mammectomies
to stop the pain of uncertainty, and also include how
obesity increases cancer rates.

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Samson's avatar

By Samson, November 26, 2009 at 2:04 am Link to this comment

Ms.Goodman hits the key point, and then ignores it.

The key is ‘trust’.  Ideally, you’d have an independent panel of smart scientists you could trust who could weigh the risks of the radiation exposure in early mammograms versus at what age women typically see tumors develop.

The problem is that in America there is no trust in this area at all.  The government is in the hands of the big corporations, so there’s no trust at all that such a panel wouldn’t be stacked in favor of corporate interests.  Don’t know if it was or not. I just know that very few Americans have any trust that today’s government is acting in their best interests.  In fact, the general fact that can be learned from watching both Democrat and Republican administrations and congresses is that none of these people give a dang about what’s best for the people.

So, of course there’s no trust at all when such a report comes out.  Nor should there be, given all that we’ve seen in the last few decades.

That’s the problem.  That’s the sign that our society and our government are severely broken and damaged.  Too many lies, too many rigged panels, too much bs that makes corporations money.  We’ve seen it all to much.

No one in their right mind would trust a government report these days.  And that’s the problem.

How to fix it? Get money out of politics.  Get back to the point where politicians have to look out for the interests of the citizens in their district.  If we can get back to having a government of the people, by the people and for the people, then maybe we could get to the point where we could trust that a study done by such a government would have the best interests of the people at its heart.  Today .. who know if it does or not?  You certainly can’t just trust that it does.

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Samson's avatar

By Samson, November 26, 2009 at 1:47 am Link to this comment

Mammograms are x-rays.  x-rays are an exposure to radiation.  The general rule about radiation is to keep any exposure as low as reasonably possible.

Exposure to radiation can cause tumors.  When you do a mammogram, you are running the risk that the the exposure to radiation could cause exactly the sort of tumor that is feared.

Sometimes, you can spot a bad argument by taking it to extremes.  So, how about this? If early detection is everything, why don’t we tell every woman to have an annual mammogram from the time they turn 18?

The reason is rather obvious. You’d be giving healthy women with little chance of breast cancer needless doses of radiation. And you’d likely be causing more breast cancers than you prevent through early detection.

Of course, no one is saying that we should start this at 18.  That’s trying to spot a bad argument at an extreme.  But, what the report does appear to be saying is that too many mammograms are done needlessly.  And that this is an unnecessary exposure to radiation.  And that this is not without a cost, and that this exposure to radiation has the potential to cause extra breast cancers. 

I have no idea whether the correct age to start taking annual mammograms is 40 or 50, or 45, or 47 or 42.  But there’s nothing at all wrong with people trying to watch and make sure we aren’t giving too many too early in life.  Because too many early mammograms has the potential to create the cancer that is so feared.

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By Filler Crowley, November 26, 2009 at 12:05 am Link to this comment

So what do you make of the fact that the report also recommended not teaching women how to self-examine for tumors? Or that this report was transparently an effort to reduce costs for insurance companies, even if women die because of it? Or that my mother would be dead right now if not for the mammogram she had when she was 43?

I guess what I’m trying to say is, the Washington Post can go fuck itself.

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