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Should Jerry Brown Just Ignore His Cancer?

  • By
  • Shannon Brownlee,
  • New America Foundation
January 2, 2013 |

As California’s oldest governor, Jerry Brown has gone out of his way to demonstrate his vigorous good health, jogging around the Capitol and even challenging reporters to pull-up contests—which he won. Now that he’s been diagnosed with prostate cancer and begun radiation therapy, some news outlets seem to be experiencing a bit of schadenfreude, gleefully calling the 74-year-old governor’s diagnosis a “blow to his healthy image.”

Cancer Screening: Emotion vs. Data

November 1, 2012
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We've just closed out a month where everything from the White House to professional football players' cleats turned pink to raise awareness of breast cancer. Every year during October, there's a constant focus on raising money for breast cancer research, and on reminding women to get screened. The mantra is always, "Early detection saves lives."

As we've written before, it's an article of faith for many patient advocates and medical organizations that cancer screening is an unadulterated good. But a new study in the Lancet on breast cancer screening provides yet more evidence that while mammography can save lives, screening also causes serious harms. They find that for every woman whose life is saved, three other women will be overdiagnosed and face unnecessary treatment. That doesn't even count the harm caused by false positives on screening mammograms, which lead to unnecessary stress as well as biopsies and other tests. It's worth noting that the population in the Lancet study includes women over 50, in line with the US Preventive Services Task Force's recommendations. Expanding screening to women under 50 means that fewer of the women screened will have harmful cancers, so the harm of overdiagnosis is more likely to outweigh benefits from catching cancer early.

To go along with the Lancet study, the New England Journal of Medicine has a new Perspective piece by Drs. Steve Woloshin, Lisa Schwartz, William Black, and Barnett Kramer. They make a forceful argument against one-sided pro-screening campaigns that present the benefits of screening, while ignoring the harms. The piece is linked to a great slide show with some of the most egregious pro-screening advertizements.

Science, Denialism, and Shibboleths

July 9, 2012
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This April the University of Wisconsin hosted a conference called "Science Writing in the Age of Denial." The conference set out to brief science writers on strategies to deal with skepticism toward and denial of evidence based discoveries (think: people hanging on to the fabricated link between vaccines & autism; denial of evidence that some cancer screenings and drugs don't work, and claims that proponents of evidence-based medicine are trying to "kill cancer patients;" vehement denial of climate change).

Gary Schwitzer, creator of HealthNewsReview.org, gave a keynote address entitled: "Cheerleading, Shibboleths and Uncertainty." Here are links to the video of his presentation and his slides.

'Shibboleth’ is a Hebrew term that was referenced in the Bible. In a story from the book of Judges, the word "shibboleth" is used to sort one tribe from another, and from that time the word has been used to mean a signal that members of a group give each other to show membership.

Mr. Schweitzer suggests that for some medical and journalism groups, unlimited advocacy for medical screening is a shibboleth. He describes these “cheerleading” groups as having a "cult-like advocacy for screening tests." His main example was the "media cacophony" that surrounded the release of USPSTF's revised breast cancer screening guidelines.  His presentation contains other examples of screening shibboleths.

Gary's work, and the work of this conference, represents an important step toward evidence based medicine. It will be incredibly hard to get evidence used in medical practice until we get better at acknowledging and counteracting forces that will push back against any threatening or uncomfortable truth. As it stands, 25-40% of all that is done in medicine is not evidence based. If we want care that is safer, more cost effective, and patient centered we need to regularly stop and evaluate ourselves and what we have learned. Then we need to keep what is working, and have the courage to leave behind our shibboleths that don’t hold up anymore.

Don't discard shared decision-making!

February 29, 2012
Austin Frakt, health economics blogger extraordinaire at The Incidental Economist, has a post up commenting on Kenny Lin's post about shared decision-making and PSA testing. The following is an edited comment I posted on that article:
I have to disagree with Kenny on this one, despite having written an article in the NYTimes Magazine that strongly supported Kenny’s work at the US Preventive Services Task Force, which found that PSA testing does not offer a mortality benefit.
Shared decision making is not about getting the patient to do what the doctor wants him to do, which judging from Kenny’s blog he thinks it is (and his opinion about the PSA test is, understandably, “Just don’t do it!”).
Frankly, as a patient, I find myself bristling when doctors (even those who are caring and well-informed) insist that they know best about what I want to do with my body. The point of shared decision making is to help patients: a) understand that ELECTIVE decisions mean the patient has a choice; b) understand the tradeoffs involved in each of the choices; and c) come to a decision that is in keeping with their values and preferences. It doesn't remove the doctor from the decision-making process, but it's not just telling patients what to do and using research to cover it up.
What I think Kenny is saying (apologies if I'm misinterpreting!) is that PSA testing shouldn't be considered an elective test—it shouldn't be presented as an option at all. I don’t know what the right answer is there, but there is a reasonable case to be made that some men might still want it, even after understanding as much as Kenny does about how lousy the test is. And it is a lousy test — as one researcher puts it, PSA predicts whether you have prostate cancer about as well as your eye color predicts the same. But while the randomized controlled trials did not find an all-cause mortality benefit from PSA testing, there’s evidence to suggest that it might possibly reduce your chances of dying from prostate cancer, though not by much. So for a man who would rather die of ANYTHING but prostate cancer (and would even prefer to die from the treatment for it) the test might be a good choice. He values avoiding a prostate cancer death, and while early diagnosis is no guarantee that he will, he might.
So while I think getting a PSA test is a really bad idea, and I don’t think I would get one myself if I were a man, and I’m glad my husband decided to forgo the test after viewing a patient decision aid, maybe it should still be considered an elective decision.
More broadly, what do the data say about shared decision making and its effect on patient decisions? A Cochrane Collaboration systematic review of more than 80 prospective RCTs comparing patients who had access to a patient decision aid (for lots of different elective decisions) and those who got usual care (the doctor tells them about their choices) found that patients who have access to an aid are better informed about the risks and benefits involved in their choices; are more realistic about those tradeoffs; and are on average 20% less likely to choose more invasive options. (That last finding is why policy makers get all excited about shared decision making.)
When you look specifically at studies of shared decision making for PSA testing, it’s not so clear that men are less likely to choose the test. There are a couple of possible reasons. I can’t pretend to have looked at all of the studies, but from a few that I’ve seen, it’s not surprising that men opt for the test because the so-called patient decision aid that was used urged them to get tested. The other reason I think its hard to dissuade men from getting tested is we have been beating the screening drum in the US for a long time. It is an article of faith that catching cancer early is universally good. It is going to take a long time to unlearn that myth.
Conclusion: discarding all of shared decision making on the basis of PSA testing is a bad idea.

Loss Leaders, Ahoy!

February 13, 2012
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In her latest installment at TIME Ideas, Shannon Brownlee takes on hospitals that use marketing tactics like offering free screening tests to patients to generate revenue and find new recurring patients, and then claim the cost of those tests as charitable activity to become eligible for billions of dollars in tax breaks. As Brownlee points out, those tactics (minus the tax exemption part) are common across retail--and nobody accuses Amazon of being a charity:

"Hewlett Packard and other manufacturers sell computer printers at rock bottom prices. Once you run out of ink, you find out the cartridge costs almost as much as the printer did. The biggest product launch of last Christmas — Amazon’s Kindle Fire tablet — sold for less than the price of its components, even without accounting for Amazon’s advertising costs. Amazon makes it up on the e-books, TV shows, and Amazon Prime subscriptions purchased by Fire users."

You can read the full piece here: http://ideas.time.com/2012/02/13/direct-marketing-and-deep-discounts-come-to-health-care/#ixzz1mHdv3qXb

Just Say "No" To Ineffective Treatments

November 28, 2011
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Shannon Brownlee's newest piece at TIME Ideas calls the FDA's de-labeling of Avastin as a breast cancer treatment "one of the most important decisions ever made by a federal agency for the nation’s long-term fiscal outlook." We don't think that's an understatement.

The importance of the Avastin decision is twofold: it strengthens the institution, and it paves the way for making the hard-but-inevitable choices that will allow us to contain health care costs in the future.

As we've noted, the whole purpose of the FDA is to determine which drugs are safe and effective. Avastin used to treat breast cancer is neither for most patients, and until the manufacturer can show that there is a sub-population of patients that can benefit, women who take it are more likely to be harmed by the drug than helped.

Now, we need to go one step further, and acknowledge that when the FDA rejects a drug--not just when it has not approved it, but when it has actively rejected it--the fiscally and medically responsible choice is not to continue paying for the treatment. As Brownlee notes in the piece, it's not a small part of the cost problem:

"Avastin is just one example of the dozens, perhaps even hundreds of drugs, tests, surgeries and medical devices that offer marginal, if any benefit to patients, which we pay for nevertheless. To take just a single example, it’s estimated that about one-third of the imaging tests, the hundreds of millions of X rays, CT scans and MRIs that are performed each year, do little if anything to improve doctors’ ability to diagnose their patients’ conditions or change the course of treatment they recommend."

Props to the FDA

November 18, 2011
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The FDA did the right thing last week when it removed its seal of approval from the use of Avastin in treating advanced breast cancer. The decision is a long time coming, given that its own expert panel recommended against approval in the first place, and that another panel recommended removing the breast cancer indication nearly a year and a half ago.

Still, this is an important and courageous move for the FDA: important because it implicitly acknowledges the FDA's duty to only approve drugs that are safe and effective; courageous because the agency will undoubtedly be raked over the coals for the decision. Members of the breast cancer advocacy community, like most other people, have a bias toward preferring action over inaction. Their frustration is understandable, as advanced breast cancer is a terrible diagnosis. For advocates of evidence-based medicine, however, it's time to stand behind the FDA. They're doing their job, and doing it well.

Several other blogs have made important points about the decision. The Incidental Economist provided an excellent list of all the things the FDA didn't do, including:

  • "Pulling Avastin from the market;
  • Banning use of Avastin for metastatic breast cancer;
  • Punishing doctors who use it off-label;
  • Banning reimbursement for off-label use; or
  • Making a death panel decision based on inadequate scientific evidence."

Of course, the FDA can't do many of these things, but many advocates seem to forget that Avastin is still available, and it will surely still be used off-label. But at least oncologists and patients will be on notice that the risks of the drug are not worth taking, at least for most, perhaps even all patients. (There might be a small sub-population of women who benefit from the drug -- and maybe not. Genentech, the manufacturer, would have to do further study to identify those women.) We echo the Incidental Economist's exhortation to journalists: please don't make these mistakes again. Don't even imply them. No excuses.

GoozNews also pointed out that insurers are unlikely to drop coverage of Avastin for breast cancer, even without the FDA's word:

"most insurance companies and Medicare will continue to follow the National Comprehensive Cancer Network guidelines. NCCN’s guideline writing committee, a third of whom have financial ties to Roche/Genentech, has said it will not withdraw Avastin’s use in metastatic patients." (emphasis added)

Under the bus you go!

October 13, 2011

We've been expecting this news for a while: organized urology has fired up its PR message machine to attack the recent USPSTF recommendation against routine PSA testing. Not surprisingly, the message's intent is to scare patients into calling their Congressmen to complain.

Here are a couple of the "Action Alerts:" 

From the American Association of Clinical Urologists...

Tens of Thousands Condemned?

October 14, 2011
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Here’s a list of the recent fibs, misdirections, misstatements and outright lies uttered by a wide variety of opinionmongers in reaction to the new guidelines on prostate cancer screening with the PSA test issued by the U.S. Preventive Services Task Force.


“There weren’t any urologists on the task force!” This was uttered by none other than Newt Gingrich, former Speaker of the House and now-presidential candidate, during the Republican debate at Dartmouth College this week. The charge was also leveled by Dr. Patrick Walsh, University Distinguished Professor of Urology at Johns Hopkins Medical Institutions. (Walsh also pioneered “nerve sparing surgery,” a technique for removing the prostate that helps preserve a man’s ability to get an erection.)

They’re right: there were no urologists on the task force. Instead, there were 15 experts, all of whom have advanced degrees in addition to their medical training, and the statistical knowledge to parse medical evidence. You don’t need to be a urologist to dissect a scientific study, and there are plenty of urologists out there who wouldn’t know the first thing about doing so.

Perhaps Paul Goldberg, publisher of The Cancer Letter, said it best when describing the urologist Gingrich cited: “I wouldn’t call him an expert in prevention; I would call him a urologist.”

Faith-Based Medicine Doesn't Save Lives - Evidence Does.

October 12, 2011
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Whenever a deeply held belief comes into conflict with evidence, the stage is set for the sort of pitched battle we’re now seeing over the U.S. Preventive Services Task Force (USPSTF) guidelines for prostate cancer screening. We’ve got headlines proclaiming “Men Can't Afford to Skip the PSA Test,” letters to Congress saying “the U.S. Government is putting the lives of thousands at risk,” and a doctor telling the New York Times, “We will not allow patients to die, which is what will happen if this recommendation is accepted.”


The reality? The report (full version here) says that there is “moderate or high certainty that [routine PSA testing] has no net benefit or that the harms outweigh the benefits,” and thus gives it a “D” rating. “D,” in this case, means “discourage this service.”


Note what the recommendation doesn’t say. It never tells doctors to “deny this service.” Nor does it say to insurers, “don’t pay for this service.” The USPSTF does not ration care, determine what private insurance has to cover, or even determine what Medicare will pay for.* Rather, the task force’s sole purpose is to distill research findings into concise advisory opinions for medical providers.


The effect of all the fearmongering -- in addition to misinforming men about the potential risks and benefits of the PSA test – is to set the stage for some potentially dangerous political theater. Congress has a habit of threatening research agencies when their findings displease some important constituency. The last controversial recommendation from the USPSTF (which said there was no need for women ages 40-49 to have annual mammograms) generated such fallout that the current recommendation was held back for nearly two years – depriving men and their doctors of crucial information about the risks of getting a prostate screening test.

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