Recently in Consumer anger/confusion Category

TMI on health for young women? Or too much of wrong kind?

| No Comments | No TrackBacks

Interesting piece by Elizabeth Cooney in the Boston Globe, "TMI! - Too much information? Chat rooms, infomercials, tweeting: Young women face new challenges in search for solid answers about their health."

Interesting sidebar:

Top 10 questions from young women


Dr. Hope Ricciotti, gynecologist-obstetrician, says these are among the most frequent queries she gets from her youngest patients:

1. How can I get rid of PMS?
2. Does what I eat really make any difference?
3. I'm thin, so I don't have to exercise, right?
4. Do I have to exercise?
5. How can I have better sex?
6. Do I really have to tell you everything?
7. Can a Pap test detect sexually transmitted infections?
8. Can my underwire bra cause breast cancer?
9. Is a manicure good or bad for my health?
10. What does that vaginal discharge mean?

The story quotes one young woman with an interesting perspective: "I usually go to the Internet, but it can be troublesome. I make sure I look at the credentials of whatever I'm looking at. On WebMD, it can be nerve-wracking when you list several symptoms and it may make you seem like you have a bigger problem than you actually do.''

And the story lists resources for young men as well.


All you have to do is use our search engine on HealthNewsReview.org to search for "Alzheimer's" and you'll get countless returns of stories and claims such as:

• Spinal-Fluid Test Is Found to Predict Alzheimer's


• Drug for Immune Disorders Helps Alzheimer's

• Miracle drug for Alzheimer's patients

• A cocktail to remember? Nutrient elixir shows promise against Alzheimer's

I could go on and on listing a litany of claims about abilities to diagnose Alzheimer's Disease earlier and better, surely leading the way to better treatments. Some stories already make sensational claims about treatments.

Now read Derek Lowe's important blog post, "Lilly's Gamma Secretase Inhibitor for Alzheimer's: Worse Than Nothing." Excerpts:

"Well, well, well. We finally have solid clinical data from a large trial of a gamma-secretase inhibitor for Alzheimer's disease. And it doesn't work.
...
And now we have the results.


Nothing. Worse than nothing - they saw real declines in cognitive function compared to the placebo group. It's not getting as much play in the news this morning, but it also appears - insult to injury - that the drug was associated with a greater risk of skin cancer. Lilly has halted any development, and told all the study centers to stop dosing immediately. All the patients who received it will be monitored to see how they do over the next few months.

This is about as bad a result as could possibly be obtained, and I think it really has to torpedo the idea of gamma secretase as a drug target. Unless someone comes up with a very compelling and intricate argument to explain these results, I don't see how anyone can risk going down this particular road again. What must they be thinking today over at Bristol-Myers Squibb, where they've been developing a direct competitor, BMS708163?

And what does this say about the amyloid hypothesis itself? Nothing good. This is the crucial period for the whole idea, with several different approaches finally yielding late-stage clinical data. And it's starting to look as if the whole idea may have been just a terrible diversion."

This is an example of why we react negatively to stories that mention "new pathways to a cure" after a study of just 3 people - as the NYT piece yesterday on Lou Gehrig's Disease did.

This is why we react negatively to Alzheimer's Disease stories that emphasize what scans can show when we don't fully understand what the images and findings mean.

This is why we react negatively to Alzheimer's stories about treatments that hype results from small, preliminary studies.

We think it's wrong - bordering on malicious - for journalists to sensationalize research findings in an area where sick people are desperate for evidence and for solid information on benefits and harms. Hope has value; sick people have told me that THEY can decide where to invest their hope - they don't need journalists doing it for them. False hope is a harm. And it's a harm that is committed far too often in news coverage of diseases like ALS and Alzheimer's disease.

ADDENDA ON AUGUST 18:

See the Harvard Health Blog post,
"Alzheimer's study on biomarkers generates debate."

See also Robert Langreth's column on Forbes.com,
"The Man Who Predicted Eli Lilly Alzheimer Failure."


A well-intentioned ad campaign run by the American Cancer Society is too vague, and, therefore, may leave impressions that are imbalanced, incomplete and unsubstantiated - the kind of common tactic seen in many drug company ads.

That's my opinion based on my analysis of the ad and based on my reading of the text.


A Cancer Society news release states:

The American Cancer Society Cancer Action Network (ACS CAN) is launching a new print and online advertising campaign in congressional districts across the country this week, urging lawmakers to fully fund a lifesaving cancer prevention, early detection and diagnostic program that is celebrating 20 years of screening low income, uninsured, and medically underserved women for breast and cervical cancer. The ads also send the message that when it comes to increasing your odds of surviving cancer, access to evidence-based early detection tools is critical.


The ads reference the Centers for Disease Control and Prevention's (CDC) National Breast and Cervical Cancer Early Detection Program (NBCCEDP), which has a track record of reducing deaths from breast and cervical cancer. The program has provided more than 9 million screening exams to more than 3 million women and diagnosed more than 40,000 cases of breast cancer and more than 2,000 cases of cervical cancer since it launched in 1990. But with limited funding, the program is able to serve fewer than 1 in 5 eligible women.

The accomplishments of the CDC NBCCEDP are noteworthy. So this blog entry is no knock on that program.

It's a criticism of the ad.

We can't fight cancer if we can't see it AD.jpg
jpg

There is no specific mention of the specific goals of the CDC NBCCEDP. The ad doesn't state what the news release states that this is promoting "20 years of screening low income, uninsured, and medically underserved women for breast and cervical cancer."

Instead, the ad promotes unspecified screening - all screening, one could infer. "We can't fight cancer if we can't see it....When it comes to cancer, screening is seeing...It's time to take the blindfolds off and stop cancer before it starts." Catchy phrases from an ad agency or from someone creative at the Cancer Society. But are we talking about prostate cancer screening? Lung cancer CT scan screening? Ovarian cancer screening? Show me where it does NOT say that. And show me where it DOES say this was about breast & pap smear screening for medically underserved women?

But this is a fund raising and political message: "current funding isn't enough...tell your members of Congress (to) increase funding..."

And when you're raising funds, a little vague fear-mongering can't hurt, right?

Wrong.

One other piece of copy from the ad demands scrutiny: "60% of cancer deaths could be prevented." The implication is that's all from screening because screening is the only prevention method mentioned in the ad. Nothing about stop smoking or other lifestyle changes. If the ad meant to imply that 60% of cancer deaths could be prevented just from screening, it should provide the evidence for that. If the ad did not mean to imply that, but was just misleadingly vague, then I call for the ACS to pull this ad. In either case, I think they have a problem.

That unsubstantiated 60% figure is especially ironic since the ACS news release includes this line: "Access to evidence-based prevention is just one component of the fight to defeat cancer." We needed a little more clear evidence here - evidence that would show that screening is just one part of prevention.

Earlier this summer I criticized a federal agency's vague screening promotion ads. I'll end this note in a fashion similar to the way I ended that note:

I know that the folks at the American Cancer Society (or their ad agency) had their hearts in the right place with this campaign. But their heads have to do a better job of learning how to communicate about screening. Or else they'll be guilty of the same disease-mongering techniques that are so prevalent in so many other messages in general circulation these days. The worried well are constantly whipped into a frenzy over the supposed weapons of mass destruction inside all of us. As a physician-colleague reminded me: "All screening tests cause harm; some may do good as well."

You'd never know it from the ACS ad. But then again, it's "only" a fundraising ad, right?

Stem cells scams "preying on desperate people"

| No Comments | No TrackBacks

Important piece by NPR's Richard Knox, "Offshore Stem Cell Clinics Sell Hope, Not Science." Read by following the link, or listen:

People are not dumb. Even if - or maybe especially if - news stories don't point out the limitations of observational studies and the fact that they can't establish cause-and-effect, many readers seem to get it.

Here are some of the online user comments in response to a CNN.com story that is headlined, "Coffee may cut risk for some cancers."

* "i love how an article starts with something positive and then slowly becomes a little gloomy. so is it good or not? i'm still where i was with coffee, it's all in moderation, it ain't gonna solve your health woes."


* "The statistics book in a class I'm taking right know uses coffee as an example of statistics run amok. It seems coffee has caused all the cancers and cures them at the same time."

* "Could it be that instead of having mysterious compounds, coffee drinkers just drink more coffee than they drink alcohol or smoke?"

* "I am so f-ing sick of these studies, or more precicesly how these "risk factors" are interpreted as "facts" by newspaper headlines. If you can't explain why something happens other than surmising, stop wasting our time."

* "...correlation IS NOT causation!!!! So people that drink 4 or more cups of coffee have a lower incidence of two certain types of head and neck cancers, and this is supposed to mean that coffee is actually "warding off" these cancers???"

We reviewed the CNN story and a WebMD story - both inaccurate because of the inappropriate use of terms like "benefit...lowers risk...protective effect" - when none of these can be proven by the kind of study they were reporting on.

And in both we referred the journalists and news consumers to a primer on our site, "Does The Language Fit The Evidence? - Association Versus Causation," that explains why it's important to get this right.

The Project for Excellence in Journalism has published an analysis of news covergae of the health care reform debate from June 2009 through March 2010. If you care about such stuff as much as we do, you should read the full report. But here's a key excerpt from their conclusion:

"No one lavished more attention on the subject than the talk show hosts, who spend much of their time engaging in ideological warfare. And the terms that resonated in the media narrative, perhaps most notably "death panels," were those that packed a polarizing punch.


All of which raises the question of the extent to which the media shed light versus heat when it came to health care reform. Certainly, many outlets did good work covering the numerous layers of the complex issue. But it's also true that the public seemed consistently confused by the health care debate and had a difficult time sorting out fact from fiction.

That was by no means entirely attributable to the media. But to the extent that the health care experience may shape the rest of the Obama presidency, it may also offer lessons for the journalists who cover it as they navigate in a changing media world."

Care to nominate your favorite (least fave?) polarizer on this topic? Do so in the comments area.


E-patient Dave (Dave deBronkart, diagnosed two years ago with stage 4 kidney cancer), blogs today under the headline, "e-Patients and doctors both, wise up. If you haven't already." If you don't know about Dave, you should. He's one of the hottest speakers at health care meetings these days. He begins today's blog:

friendDave.jpg

"I've only been studying healthcare for two years - far less than most people on this blog - and I hesitate to be overly assertive. But I have, finally, reached the point where I feel confident in citing cases where people are simply being unscientific: ignoring evidence. That's always hazardous, and it becomes insidious when it's caused by a blind, unquestioning belief in our institutions."

One of those institutions, he points out, is the peer-review system. He quotes Richard Smith, longtime editor of the British Medical Journal, who wrote in the Journal of Participatory Medicine:

"...evidence on the upside of peer review is sparse, while evidence on the downside is abundant. We struggle to find convincing evidence of its benefit, but we know that it is slow, expensive, largely a lottery, poor at detecting error, ineffective at diagnosing fraud, biased, and prone to abuse. Sadly we also know--from hundreds of systematic reviews of different subjects and from studies of the methodological and statistical standards of published papers--that most of what appears in peer-reviewed journals is scientifically weak."

Finally, Dave plugged our project, which he calls a "wise-up tool."

Read his entire column. I've only given you a few points from it.

Serving Size Silliness

| No Comments | No TrackBacks

Who eats just six chips? That's one of the questions William Neuman asks in a video on the New York Times website, "Serving Size Sleight of Hand." He also explores how these serving sizes ever came to be set as they have been - finding that the answer goes back to consumer surveys of 30-40 years ago.


Screen shot 2010-02-13 at 9.26.40 AM.png

WSJ follows the mammogram money & lobbying

| No Comments | No TrackBacks

Alicia Mundy of the Wall Street Journal reports: "The final health-care bill is likely to require coverage for more mammograms than the new guidelines recommend after women's groups, doctors and imaging-equipment makers stepped up pressure on lawmakers -- one of many threads of the bill negotiated behind the scenes."

CBS Early Show's confusing breast screening info

| 1 Comment | No TrackBacks

Someone suggested that we comment on a CBS segment from two weeks ago. We reviewed it and found it to be the most confusing jumbling of breast cancer screening information we've seen from a major news organization.

The anchor began by saying, "Now it seems like we're getting new recommendations every week and it's confusing."

Every week? Only if you make it seem that way.

Then the anchor and physician-correspondent began discussing "the latest study" showing that "mammograms in younger women could increase their risk of cancer." They discussed an unspecified study in high-risk women, some of whom had mammograms before the age of 20.

Huh? If this was supposed to follow up the US Preventive Services Task Force recommendations for women in their 40s, why were they suddenly talking about mammograms in high-risk women including teenagers? And when you look for breast cancer in high risk women it is no longer accurate to refer to this as "screening." Screening refers to looking for disease in broad populations of apparently healthy people with unknown risk.

The semantics are important. Or else you're confusing people even more.

The physician-correspondent immediately followed this discussion by saying that the American Cancer Society stands by its recommendations that the benefits of screening far outweigh the risks.

Again, huh? In the teenagers the segment had just discussed? That's ludicrous.

Then the segment, which was labeled as being about alternatives to mammograms, discussed only one - ultrasound - calling it "our most important test." That, dear readers, is a completely unfounded statement.

The anchor quickly shut off the discussion. No other "alternatives" were discussed and the segment whizzed by anyone who was watching in a whirlwind of misinformation that ran one minute and 43 seconds.

Let's hope most viewers were instead brushing their teeth or getting their first cup of coffee at the time. Better yet, that they had the TV turned off.

Bioethicist worries about "crying wolf" over H1N1

| No Comments | No TrackBacks

On MedPageToday.com, physician-bioethicist Jeffrey Hall Dobken suggests that "perhaps we can tone down the sky-is-falling just a bit" on H1N1. And he includes news coverage in his review of the "tension...reinforced by the endless health warnings."

I would ignore this except that it's in the Washington Post and despite the fact that they're closing bureaus in Chicago, Los Angeles and New York, what's in what remains of the paper is still influential.

So I feel compelled to address Dana Milbank's column in the Post about the US Preventive Services Task Force breast cancer screening recommendations.

He characterized the USPSTF recommendations as a "cruel and clumsy blow" that "wiped out much of the progress" in breast cancer detection.

Huh?

It got worse, as he wrote:.

"With a drumbeat of recommendations raising doubts about various cancer screenings, the public could easily get the mistaken impression that all cancer screening is a waste of time and money."

Stop the foolishness.

The USPSTF said nothing about any cancer screening being a waste of time and money. In fact, it recommends biennial screening mammography for women aged 50 to 74 years. It recommended against routine screening mammography in women aged 40 to 49 years, stating "The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient's values regarding specific benefits and harms."

How "cruel" to try to ensure that women are fully informed about benefits and harms, and to state that this should be an individual decision based on individual values.

If the public can get the impression that all cancer screening is a waste of time and money from those statements, then Milbank might better spend his time educating the public on how to read.

It got worse. Much worse. As he continued:

"Luckily, Congress has a simpler solution at hand: It can abolish the task force and turn it into a group that is more accountable to the public. Under the House version of health-care legislation, the task force, whose members need not subject themselves or their opinions to public comment or public hearings, would be reorganized as a federal advisory committee subject to oversight. Their scientific judgments would stay independent, but the group would no longer be able to go rogue with surprise recommendations."

Oh, that would be a grand idea. Make science accountable to the public? Let's make science ignore the evidence and tell us fairy tales that we want to hear. That everything is terrific, risk-free and without a price tag? And let's make the independent task force subject to federal government oversight. Then we can make science ignore the evidence and only spew out what is politically popular at the moment.

Milbank believes his ideas mean that the task force would no longer be able to "go rogue with surprise recommendations." Read your own paper, Dana.

Dan Eggen and Rob Stein reported that "The findings underscore a decades-long debate in the medical community about the benefits and risks of routine breast cancer screening for younger women." So this is not "rogue" and not "surprising" to anyone who has made any attempt to follow the issue.

Why did he choose to give only Nancy Brinker's side of the story? His own paper reported this praise for the USPSTF recommendations:

"It's about time," said Fran Visco, president of the National Breast Cancer Coalition, a Washington-based patient advocacy group. "Women deserve the truth -- and the truth is the evidence says this is not always helpful and can be harmful."

But it's really sick when a columnist suggests that task force members be sent to Gitmo and that they be sent "to the Death Panel for a humane end."

If he thought this was humorous, it wasn't. If he thought his column clarified anything, it didn't. Confusion and rhetoric will reign as long as we continue to get one-sided, vacuous, inaccurate columns like this. If, indeed, anyone is reading it.

The disconnect between the facts and women's beliefs about breast cancer was shown again in a USA Today story. Excerpts:

"A vast majority of American women plan to ignore controversial new recommendations about mammograms, a USA TODAY/Gallup Poll shows. The poll also shows that most women sharply overestimate their risk of developing the disease. ...


Forty percent of women estimate that a 40-year-old's chance of developing breast cancer over the next decade is 20% to 50%. The real risk is 1.4%, according to the National Cancer Institute."

Woloshin chart.png Is it any wonder that women say they'll ignore the USPSTF recommendations when they over-estimate their own risk by such a huge degree! And such over-estimation of risk is not new - having been reported consistently through the years.

The story includes this chart, with figures that get lost in the rhetoric.

Paul Scott has an opinion piece in the Rochester Post-Bulletin in which he criticizes what he calls the Mayo Clinic's "vague and surprisingly unprepared" response to the US Preventive Services Task Force's mammography recommendations.

"Taking unspecified issue with "the modeling data used in the analysis," it stated "a substantial number of women who receive biopsies because of a screening mammogram are found to have cancer." Mayo's Dr. Sandhya Pruthi added "there are many stories about younger women who have found cancer early as a result of screening."


I'm not sure why she made mention of stories. Dr. Pruthi is surely a talented clinician, but in supporting mammograms for women in their 40s here she is citing anecdotes, not data. It would have been better for her to acknowledge that when it comes to population-wide recommendations about screening and illness, medicine always eventually draws a line in the sand somewhere. People invariably will fall on either side of that line wrongly, but if we don't draw a line somewhere, you have to screen everybody for everything, and screening sets in motion the potential for new harms."

It seems that anyone who opposes the USPSTF recommendations trots out personal anecdotes to bolster their argument. Scott countered and concluded with an anecdote of his own:

"I would like nothing more than for our society to prevent the incidence of breast cancer. It took the life of my mom, who identified a tumor on her own at 37, was treated surgically at Mayo in the mid 1970s, and who then lived another 26 years. But my mom believed in science, and in trusting science, and in this case, the science says what it says. I hope that Mayo can do the same, even when doing so runs against that which is popular."

The first online comment posted in response to Scott's opinion piece stated that "there isn't one single oncologist on the US Preventive Services Task Force." I've heard that curious argument before. Evidence is evidence - regardless of whether you're a primary care doc, an oncologist, an epidemiologist, an ob-gyn or a breast surgeon. Evidence-based medicine should be guided by the best evidence, not by the personal experiences or preferences of any specialty group.

John Crewdson in The Atlantic:

"The current controversy over the task force's report owes much to the media's confusing coverage, some of which has been misinformed, including by TV doctors who ought to know better.


The confusion has been abetted by the American Cancer Society, whose position appeared to have softened, then hardened again, in recent weeks.

There are multiple reasons women are ill-informed about breast cancer. The fault lies primarily with their physicians, the cancer establishment, and the news media--especially the news media. Until coverage of breast cancer rises above the level of scary warnings mixed with heartwarming stories of cancer survivors, women are likely to go on being perplexed."

Washington Post media columnist Howard Kurtz strayed beyond media observations and injected his own comments about the US Preventive Services Task Force breast screening recommendations.

He calls the task force recommendation a "don't-worry-be-happy-till-you're-50 finding."

He defines "the essential problem with such studies" as "in the end it's a very personal decision."

Exactly. And that was the entire point of the USPSTF recommendation - that women need to weigh the harms and benefits in consultation with their doctors. But Kurtz must not have read that far.

And then he goes on to cite a list of journalists who wrote about their own personal opposition to the recommendations.

But he didn't quote even one person who wrote in a more balanced way about the evidence behind the recommendations. So, while his column was headlined, "A battle over breasts," he didn't present much about "the other side" in this battle.

Then again, Kurtz has exhibited an advocacy stance for the screen-screen-screen mentality in the past in his handling of a friend's promotion of prostate cancer screening.

My friend Robert Davis writes about five popular falsehoods he's seen this week in the "the widespread confusion, consternation, and even anger that the new (US Preventive Services Task Force mammography) guidelines have unleashed." His five:

1. This is all about saving money.


2. This is about rationing.

3. Early detection saves lives.

4. The fact that I or someone I know was saved by a mammogram proves that more testing is better.

5. The shifting recommendations prove that scientists are clueless.

Read his entire column. He's a smart guy and his summary is insightful.

I am a frequent critic of TV health news - and especially of much of this week's TV coverage of the US Preventive Services Task Force mammography recommendations. So I want to make special note this week of some of the fine work by Dr. Nancy Snyderman on this issue. I've seen several examples where she offered more explanation and context than her network TV competitors.

Case in point: this clip on yesterday's NBC Today Show.

In it, Snyderman said: "What we as a population were unwilling to accept - which has become very apparent in the last 48 hours - is that we didn't like the message." Yet she emphasized that the message was what the science shows.

She said HHS secretary Sebelius threw the task force under the bus and oversimplified the message by telling women "keep doing what you're doing."

She said "emotion, anecdote, lobbying, advocacy groups, doctors and patients" led to a political reversal.

She said "This is the role of scientists to take the emotion out of the science. That was their charge - look at the hard numbers and give recommendations back."

While she editorialized on Sebelius, her even-handed comments on the work of the task force stood in sharp contrast to some of what was broadcast on ABC, CBS, CNN and Fox.

For a long time, I've urged health care journalists to refer to the recommendations of the US Preventive Services Task Force and to educate readers/viewers about how the group operates.

Perhaps one of the reasons the task force's recommendations this week caught so many people by surprise is that journalism hasn't done a good enough job of:

• explaining the uncertainties that still exist and always have existed about mammography
• explaining the work of the USPSTF

Gina Kolata of the NYT offers somewhat of a backgrounder/explainer today.

All of their work - how they do it - what they base their recommendations on -who they are - is available online - and has been.

Since they're an independent group of experts from across the country, they have no PR machine like the American Cancer Society does. So it's easy for the ACS to rule the airwaves and the columns when they disagree with something the USPSTF states.

But I think journalists have failed badly in explaining this work. And the harm done to evidence-based medicine this week may be lasting.

More on the reactions to the US Preventive Services Task Force mammography recommendations. Susan Perry writes on MinnPost.com about:

"... the rampant, breathless fear-mongering rhetoric that has framed much of the media's response to the recommendations. ...


On ABC's daytime talk show "The View," co-host Elisabeth Hasselbeck made the stunning claim that the recommendations were "gender genocide."

I can't tell you how many times I've used that line in interviews recently.

So it was refreshing to see someone else - Steven Pearlstein - use it today in the Washington Post. (* Actually, either he or the copy desk butchered the quote, leaving out the "not." Surely they meant well, but the quote and the point makes no sense without it, and indeed, is NOT what the standard line is. I've added it in the following excerpt with a * and hope the Post corrects this soon.)


"I should acknowledge that I have no idea who should and should not get routine mammograms. But I know enough about statistics to say that the issue is not settled just because you know of someone in her 40s whose breast cancer was detected by a mammogram and cured. As economists and medical researchers are fond of saying, the plural of anecdote is *(not) data. ...


As is often the case in such matters, those raising the most fuss were those with greatest financial interest in mammography (the radiologists and the makers of mammography machines) and the disease groups (in this case, the American Cancer Society), which tend to resist recognizing limits on how much time, money and attention is devoted to their cause.

"How many mothers, sisters, aunts, grandmothers, daughters and friends are we willing to lose to breast cancer while the debate goes on about the limitations of mammography?" Otis Brawley, chief medical officer of the American Cancer Society, asked in an op-ed article in Thursday's Washington Post. Dr. Brawley cleverly didn't answer his own question, but the clear implication of his question was that the only acceptable number should be zero. And it is that very attitude, applied across the board to every patient and every disease, which goes a long way in explaining why ours is the most expensive, and one of the least effective, health-care systems in the industrialized world."

Not only did Dr. Sanjay Gupta of CNN show his imbalanced perspective on the US Preventive Services Task Force breast screening recommendation. But CNN's non-physician medical correspondent, Elizabeth Cohen, also offered her opinion on the air.

She said:

"This task force is the only big group that is saying this. There are lots of groups that disagree with this. So for me, a woman in her 40s who has to make this decision, I look at it this way. I say, alright, government task force says I don't necessarily need a mammogram. On the other hand, the American College of Obstetrics and Gynecologists says I should get one. The American Society for Clinical Oncology says I should get one. The American Cancer Society (a chuckle and smirk now appear in her voice and on her voice) say I should get one. I think you can see how that decision - how that weighs out."

No, Elizabeth, I don't see from what you cited how that decision should play out.

Because you haven't explained any evidence to me.

You haven't explained the need for shared decision-making between informed patients and their health care providers.

You've merely drawn a red state/blue state map for me - except that your map was incomplete. What do you mean by "big group"? Do you mean the organizations with big PR machines that usually spin their stories through you?

Because the National Breast Cancer Coalition, Breast Cancer Action, and the National Women's Health Network are among the "little groups" - as you must define them - who support the US Preventive Services Task Force recommendations.

CNN, what have you done to educate viewers on this issue?

What have you done to explain the data?

And why should I care about what Elizabeth Cohen decides?

Why should I care any more about her decision than about the story of women who regret that they ever were screened? (A story she chose not to tell.)

You can hear what Cohen said and how she said it in the clip below from Newsy.com.

You'll also see the comments from Fox News' "Dr. Manny." Perhaps CNN has achieved its goal. In an attempt to catch Fox News in the ratings, it has become just like Fox News.

Slate republishes a five-year old piece that does two things:

• a good job of explaining the potential harms of screening
• re-establishes the fact that this is NOT a new debate (by the very fact that it's 5 years old and could have just as easily been 15 years old).

In the stories reported by major news organizations all across the US, there have been countless quotes that make wild, unsubstantiated charges about the motivation behind the US Preventive Services Task Force's breast screening recommendations.

A quote in a New York Times story yesterday:


"Why all of a sudden this change?" said Karen Sun, 41, who was loading her groceries into her car here in Los Angeles. "It feels out of nowhere."

It's not all of a sudden and out of nowhere.


As the Washington Post led with in their story, this has been a decades-long debate. What we have seen in the past 3 days is akin to what happened with the uproar 12 years ago after a NIH Consensus Conference on this issue made a concluding statement that many women - and their politicians - disagreed with.


In an ugly clash between science and politics, confusion reigned.

And now it's happening again.

From the LA Times:

Some Republicans jumped on the report as the kind of government intervention in medical decisions that Obama's healthcare plan would bring.


"This is really the first step toward that business of rationing care based on cost," said Rep. Phil Gingrey (R-Ga.), a physician.

Where is the evidence for that? That is fear-mongering rhetoric.

In the Washington Post:

"We can't allow the insurance industry to continue to drive health-care decisions," said Rep. Debbie Wasserman Schultz (D-Fla.), who said earlier this year that she had undergone treatment for breast cancer.

Wasserman-Schultz, whose legislation promoting breast cancer education in young women was widely criticized by evidence-based experts, should be forced to produce evidence for her claim as well.

And on ABC last night, a physician was allowed to say - unchallenged - that mammograms pick up early cancers when they need less treatment. If anecdotes are going to rule the day, then that physician should have to counter the anecdotes I've heard from women whose early DCIS or ductal carcinoma in situ - often called "pre-malignant" or "pre-cancerous" - was picked up by mammograms. And the range of treatment options then thrown at them - as aggressive as prophylatic bilateral mastectomy - left the DCIS-diagnosed to wish that they had actually received a diagnosis of invasive cancer because the choices were easier and more clear cut. These are real stories I heard from real women. The story - the discussion - isn't complete without taking into account the experiences of women like that.

I watched all three TV networks' lead stories from last night's newscasts - all three on the US Preventive Services Task Force's new breast cancer screening recommendations. Lots of talk about "anger, confusion, concern, fear, outright revolt, disturbing, shocking" reactions from women and doctors all across the country.

First, I'll note a reasonably well-balanced job by CBS' Dr. Jon LaPook and by NBC's Dr. Nancy Snyderman. LaPook included a woman who had experienced a false positive mammogram. Snyderman talked about data versus personal anecdotes.

But ABC's Dr. Timothy Johnson gave a personal recommendation - perhaps only because he was asked to by anchor Charles Gibson - and recommended "sticking with the current guidelines." He said he understood concerns about costs and quality. But that misses the underpinning of much of the USPSTF's recommendation and rationale. It implies that the USPSTF considered costs, which they have repeatedly reiterated they did not. He never addressed false positives and the harms thereof. So his summary was misleading and incomplete.

And CBS again allowed Dr. Jennifer Ashton to give her own personal medical opinion, saying "I am not telling (women) to deviate from their screening practices."

I have a lot of problems with the networks giving airtime to the opinions of their physician-correspondents. Do they ask political reporters about their voting habits? Do they ask economics reporters what their investments are? Do they ask the White House correspondent if they personally like the President or support his stances?

I don't personally care what Timothy Johnson or Jennifer Ashton recommend - and I don't think there's any reason for anyone in the viewing audience to care. In this venue, they are supposed to be journalists. Not recommenders. Not opinion-promoters.

Instead of promoting their celebrity docs, the networks should use that precious air time to educate people on the evidence behind the USPSTF recommendations.

All three networks - and many other news organizations - are treating this issue as if it's new. There never has been certainty about mammography recommendations for women in their 40s. And it was just 12 years ago that an NIH Consensus Conference on this issue resulted in a great uproar - what one editorialist described as "what took place seemed more akin to the Queen's order in Alice's Adventures in Wonderland: "Off with her head!" Thus began the latest round in the debate over recommendations for breast-cancer screening."

Journalism has to take responsibility for conveying far too much certainty about screening issues. And at times like this, when evidence-based bodies speak up, journalists - and the public they serve - act as if their worlds have been shaken. But, in fact, their world on this issue never was cast in concrete. Anyone who spends anytime following this issue would know that.

In the face of the confusion, journalists can fuel the flames by interviewing endless women about their personal anecdotes. Or they can explain, give context, history, guide readers and viewers through the confusion.

Dr. Nancy Snyderman of NBC News appeared on the Today Show with Matt Lauer last week, profiling a physician-author who has written that the best science does not establish a causal link between childhood vaccines and autism. Matt & Nancy.png

Lauer, in a followup question, mis-spoke and called it a "casual" link - not causal. One wonders whether he truly knows what the words mean.

Snyderman talked about how the physician-author, Dr. Paul Offit (author of "Autism's False Prophets"), has received death threats. Snyderman herself said she had been physically ambushed by those who contend that vaccines cause autism.

As Snyderman was wrapping up the segment, Lauer said - in typical anchor throwaway language:
"Controversial subject ..."

Snyderman immediately shot back, "Not controversial subject , Matt. ...It's time for kids to get vaccinated. The science is the science. It's not controversial."

You can see the video here or here.

Kudos to Snyderman for educating her big-bucks anchor colleague live on-the-air.

As we flip the calendar over from a very busy May into a sunny June, I want to reflect on the common themes in the blog entries of the past four days:

1. My PLoS Medicine article, “How Do US Journalists Cover Treatments, Tests, Products and Procedures? An Evaluation of 500 Stories.�

2. The Commonwealth Fund analysis on variations in child health care across the US.

3. Another "more care isn't always better care" study - this time in JAMA.

4. Consumer Reports releasing an online tool using Dartmouth Atlas data to allow you to look at aggressive vs. conservative care - comparing hospitals on this scale.

Connect the dots. Jack Wennberg's work rings through these themes.

Inexplicably widespread variations exist in the way health care is practiced in this country and more data comes in every day. More evidence also comes in every day that "more and newer isn't always better" in health care. And journalists are spending too much time on the "more" and the "newer" rather than on questions of evidence, costs, quality and access to care.

As a result, many consumers aren't getting much smarter at a time when some policymakers, employers and insurance company marketing folks push "consumer-driven health care" plans. Americans don't know what they're buying with the health care dollar and giving them more "skin in the game" doesn't make them smarter - only makes them hurt more - if they're not educated in the dots.

A study in the journal Cancer Epidemiology, Biomarkers and Prevention reports widespread confusion in America about cancer and cancer prevention.

Nearly half of respondents (47.1%) agreed that "It seems like almost everything causes cancer," 27.0% agreed that "There's not much people can do to lower their chances of getting cancer," and 71.5% agreed that "There are so many recommendations about preventing cancer, it's hard to know which ones to follow."

I'm a journalist so I always look in the mirror first and I blame journalists for creating much of this confusion. The "cure" or "killer" emphasis in many stories - in order to compete for space or airtime - shows no appreciation for public understanding. Fulltime health, medical and science reporting jobs are being slashed all over the country.

Just look at how some top news organizations recently handled cancer screening stories.

And then we have health insurance marketing people shoveling "consumer driven health care plans" at us. This study is further evidence of how far away many Americans are from understanding how to be in the driver's seat of their own health care - admirable though that goal may be.

CNN’s House Call with Dr. Sanjay Gupta once again showed its one-sided, pro-screening bias this weekend. Excerpt:

We're starting with a change in what's been standard medical advice for a long time. For years, women over 40 have been told they need routine mammograms. Now the American College of Physicians says women with no risk factors for breast cancer should talk to their doctors first, that perhaps they could postpone their mammogram until they turn 50.

The American Cancer Society says annual mammograms starting at age 40 are still the way to go. You know what? It's leaving a lot of women wondering who they should believe.

So here to clear things up is Dr. Larry Norton. He's director of Breast Cancer Programs at Memorial Sloan-Kettering Cancer Center.

Well, Dr. Norton doesn’t accept the College of Physicians’ reasoning, writing them off as “an organization of internists��? – not cancer specialists or surgeons. He said:

"But the fact is that every woman that I speak with would much rather have a needle biopsy, which is not such a big deal, to make sure that the thing that the mammogram finds is not cancer, than actually miss a cancer that could cost her her life, or cost her her breasts."

OK, but that's personal anecdote, not evidence. There's an old saying: the plural of anecdote is not data. One big chunk of evidence he didn’t address is DCIS – or ductal carcinoma in situ – which shows up more often in earlier mammograms and leaves women confused about whether it’s a cancer, or, as it’s often called, pre-malignant or precancerous. And there is no consensus about what to do about DCIS once you find it. Why didn’t he talk about these cases? And why didn’t Gupta ask about them?

And why did Gupta and CNN only give airtime to one side of the argument? The perspective of the American College of Physicians (ACP)- the largest medical specialty organization and the second-largest physician group in the United States, representing 120,000 members - was simply not represented.

The ACP says its "clinical guidelines are developed in an explicit, rigorous process based on extensive review of available scientific evidence. They are considered 'evidence-based' rather than “expert-opinion��? or consensus guidelines. In addition to publications from the original mammography trials, ACP reviewed 117 studies to evaluate the evidence about the risks and benefits of mammography screening for women between the ages of 40 and 49."

Yet CNN didn't give ACP a voice in this segment, and let its guest get away with saying "We still need to figure out why they made this recommendation." Why not ask them on the air?

Three times in the segment, Gupta said his guest “cleared up��? the confusion. I guess it’s easy to view something as clear if you only open your mind to what you want to believe.

CNN has shown a pro-screening, evidence-be-damned mentality before. It is not balanced. It is not complete. And it is not journalism. It is advocacy.

On the listserv of the Association of Health Care Journalists, a journalist raises an important issue that we don't hear enough about. That journalist wrote:

"May I suggest that while Washington is obsessing about Walter Reed, the rest of us should be paying attention to what’s happening in our back yards in the run-up to the deadline for switching Medicare Advantage plans? In many areas, plans have contracted with independent brokers/agents to make a last push to persuade beneficiaries to switch plans. Many broker/agents who signed beneficiaries up for one plan in the fall (to begin Jan. 1) are now urging them to switch before the deadline; that way, they collect commissions twice. There’s a lot of misinformation being spread, a lot of dirty tricks. By the time we get around to reporting on it, the March 31 deadline will have passed and the misinformation campaigns will have been successful."

Have you heard anything about this from your news organizations in your market?

About this Archive

This page is an archive of recent entries in the Consumer anger/confusion category.

Conflicts of interest is the previous category.

Disease mongering is the next category.

Find recent content on the main index or look in the archives to find all content.