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Talking Science With Patient Advocates

Laurie Edwards has a rare chronic disease called primary ciliary dyskinesia. Her symptoms are quite similar to those associated with cystic fibrosis, and her young life has been punctuated by numerous hospitalizations, physical limitations and the occasional near-death experience. She is a remarkably upbeat woman, and attributes her self confidence and optimistic outlook to her loving friends and family.

Laurie is part of the patient blogging community online. She reads physician blogs with interest, and wants to protect others like her from snake oil and misinformation. She recently interviewed me about my pro-science views for a new book that she’s writing. People like Laurie play a critical role in accurate health communication, and I welcome the chance to discuss science-based medicine with them. Here are some excerpts from our chat: (more…)

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Pseudo-expertise versus science-based medicine

I am a skeptic.

My support for science-based medicine, as important as it is and as much time, sweat, and treasure I spend supporting it, is not the be-all and end-all of my skepticism, which derives from a scientific world view. That’s why, every so often, I like to step back from medicine a bit and look at the broader picture. It’s a good idea to do this from time to time, because to me, many of the topics that I and my fellow SBM bloggers write about are not just manifestations of anti-science and pseudoscience in medicine, but rather of a broader problem of anti-science and pseudoscience in society at large. I concentrate on medicine because it’s what I do and because manifestations of pseudoscience in medicine have the potential to harm or even kill large numbers of people.

Look no further than the anti-vaccine movement if you don’t believe me. Already, a mere decade after Andrew Wakefield’s lawyer-funded, incompetent, and perhaps even fraudulent “study” about a supposed relationship between the MMR vaccine and autism, uptake of MMR vaccines have plummeted throughout the U.K., with some areas of London reporting only 50% uptake, far too low for effective herd immunity. Thanks to J.B. Handley, Jenny McCarthy, Jim Carrey, and the know-nothing band of celebrities and activists, we are in serious danger of having the same sort of thing happen right here in the U.S. Indeed, Jenny McCarthy herself has even acknowledged that, although in her characteristically self-absorbed and vulgar manner, she refused to take responsibility for her part in this impending public health debacle, dismissing her role by saying, “I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it’s their fucking fault that the diseases are coming back. They’re making a product that’s shit. If you give us a safe vaccine, we’ll use it. It shouldn’t be polio versus autism.” Meanwhile autistic children suffer from the quackery to which they are subjected in a futile attempt to “recover” them from “vaccine injury”-induced autism.

But it’s not just the anti-vaccine movement. It’s cancer quackery, promoted by “luminaries” such as Suzanne Somers and Bill Maher, given aid and comfort by doctors gone bad such as Dr. Rashid Buttar and Dr. Nicholas Gonzalez, “bioidentical hormone” woo promoted by the aforementioned Suzanne Somers and Dr. Christiane Northrup. It’s all manner of other faith-based and definitely non-science-based medicine so called “complementary and alternative medicine” (CAM, which is neither complementary nor medicine, although there is no doubt that it’s “alternative”) or “integrative medicine” (which “integrates” pseudoscience with effective medicine to the detriment of patients) finding its way into our academic medical schools, even to the point of being mandatory at at least one medical school and being a strongly touted option at many others. Meanwhile, the misbegotten behemoth of woo, funded by your tax dollars and mine, the National Center for Complementary and Alternative Medicine (NCCAM) promotes remedies based on a prescientific understanding of how the body works and what causes diseases, even going so far as to promote “integrative medicine” residencies. Meanwhile science-based medical students face a serious dilemma: Go with the flow or fight.
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Posted in: Politics and Regulation, Public Health, Science and the Media, Vaccines

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Yes, But. The Annotated Atlantic.

Reposted on 11/8 with multiple typo corrections.

The Atlantic recently published an article called “Does the Vaccine Matter?.” The quick answer is “yes”. If you want to know more, keep reading. They concluded, based on a narrow interpretation of a small subset of the data, that vaccines probably do not matter. The tone suggests that the vaccine is a vast boondoggle perpetuated on the American people by frightened doctors and greedy pharmaceutical companies. At least that is my take on the article, your mileage may vary. Lets look at that article, and its review of the influenza vaccine, and see whatthe authors  say, how they say it, and, perhaps more importantly, what they don’t say.

Unfortunately, I do not have a good story to tell with protagonists and antagonists and lone voices protesting the evil medical industrial complex. I don’t have a morality tale to tell, with good guys and bad guys. I have the medical literature, with its numbers and uncertainties and nuance. I also have patients I have to treat and have to apply the medical literature to as best I can.
This entry may be a bit of a repetition for those who read my previous entry on vaccine efficacy, but my entry hit the blogosphere a few days before the Atlantic article, so I did not get a chance to incorporate it into my entry. (more…)

Posted in: Science and the Media, Vaccines

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When Loud Wins: Will Your Tax Dollars Pay For Prayer?

Today the LA Times described a bizarre and troublesome healthcare reform bill provision that would require Medicare to pay for Christian Science Prayer as a medical treatment:

…a little-noticed provision in the healthcare overhaul bill would require insurers to consider covering Christian Science prayer treatments as medical expenses.

The provision was inserted by Sen. Orrin G. Hatch (R-Utah) with the support of Democratic Sens. John F. Kerry and the late Edward M. Kennedy, both of Massachusetts, home to the headquarters of the Church of Christ, Scientist.

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Posted in: Faith Healing & Spirituality, Politics and Regulation, Science and the Media

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The cancer screening kerfuffle erupts again: “Rethinking” screening for breast and prostate cancer

I see that the kerfuffle over screening for cancer has erupted again to the point where it’s found its way out of the rarified air of specialty journals to general medical journals and hence into the mainstream press.

Over the last couple of weeks, articles have appeared in newspapers such as the New York Times and Chicago Tribune, radio networks like NPR, and magazines such as TIME Magazine pointing out that a “rethinking” of routine screening for breast and prostate cancer is under way. The articles bear titles such as A Rethink On Prostate and Breast Cancer Screening, Cancer Society, in Shift, Has Concerns on Screenings, Cancers Can Vanish Without Treatment, but How?, Seniors face conflicting advice on cancer tests: Benefit-risk questions lead some to call for age cutoffs, and Rethinking the benefits of breast and prostate cancer screening. These articles were inspired by an editorial published in JAMA last month by Laura Esserman, Yiwey Shieh, and Ian Thompson entitled, appropriately enough, Rethinking Screening for Breast Cancer and Prostate Cancer. The article was a review and analysis of recent studies about the benefits of screening for breast and prostate cancer in asymptomatic populations and concluded that the benefits of large scale screening programs for breast cancer and prostate cancer tend to be oversold and that they come at a higher price than is usually acknowledged.

For regular readers of SBM, none of this should come as a major surprise, as I have been writing about just such issues for quite some time. Indeed, nearly a year and a half ago, I first wrote The early detection of cancer and improved survival: More complicated than most people think. and then followed it up with Early detection of cancer, part 2: Breast cancer and MRI. In these posts, I pointed out concepts such as lead time bias, length bias, and stage migration (a.k.a. the Will Rogers effect) that confound estimates of benefit due to screening. (Indeed, before you continue reading, I strongly suggest that you go back and read at least the first of the aforementioned two posts to review the concepts of lead time bias and length bias.) Several months later, I wrote an analysis of a fascinating study, entitling my post Do over one in five breast cancers detected by mammography alone really spontaneously regress? At the time, I was somewhat skeptical that the number of breast cancers detected by mammography that spontaneously regress was as high as 20%, but of late I’m becoming less skeptical that the number may be somewhere in that range. Even so, at the time I did not doubt that there likely is a proportion of breast cancers that do spontaneously regress and that that number is likely larger than I would have guessed before the study. Of course, the problem is that we do not currently have any way of figuring out which tumors detected by mammography will fall into the minority that do ultimately regress; so we are morally obligated to treat them all. My most recent foray into this topic was in July, when I analyzed another study that concluded that one in three breast cancers detected by screening are overdiagnosed and overtreated. That last post caused me the most angst, because women commented and wrote me asking me what to do, and I had to answer what I always answer: Follow the standard of care, which is yearly mammography over age 40. This data and these concerns have not yet altered that standard of care, and I am not going to change my practice or my general recommendations to women until a new consensus develops.
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Posted in: Cancer, Diagnostic tests & procedures, Public Health, Science and the Media

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J.B. Handley of the anti-vaccine group Generation Rescue: Misogynistic attacks on journalists who champion science

There’s been something I’ve been meaning to write about all week, but only just got around to it. There were lots of other things going on at my other online locale, and this topic is such old hat for so many that I really wasn’t sure if it was worth bothering with. My reluctance may also be, sadly, because I’ve become a bit jaded at the nastiness that anti-vaccine groups such as Generation Rescue (i.e., “Jenny McCarthy and Jim Carrey’s Autism Organization”–at least these days) and its erstwile founder J.B. Handley routinely lay down when someone points out that the emperor has no clothes, that vaccines do not cause autism. I’m referring, of course, to Amy Wallace, who wrote what is the best example of an article in the mainstream media about the anti-vaccine movement that “gets it.” The article was called An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All and appeared in WIRED Magazine.

It was a thing of beauty. There was no false “balance” that puts cranks pushing dangerous pseudoscience on the same plane as real scientists like Paul Offit. There was even a section calling out purveyors of vaccine misinformation. Several luminaries of the the anti-vaccine movement were there, including ones discussed frequently on this blog, like Jenny McCarthy and Jim Carrey, and Robert F. Kennedy, Jr. But that wasn’t all! There was even a section on how to debunk anti-vaccine canards. What more could an advocate of science-based medicine ask for?
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Posted in: Science and the Media, Vaccines

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Mainstreaming Science-Based Medicine: A Novel Approach

I have often mused about the difference between being right and being influential – especially in light of the relative success of the anti-vaccine movement. Despite the fact that there is no evidence for a link between vaccines and autism, celebrities like Jenny McCarthy have manufactured public mistrust in one of the safest, most cost effective means of combating disease known to humankind.

So if scientists are not persuading the public with appeals to carefully designed trials and factual data, how should they make their point? I’m not sure I have the full answer, but I think I might have struck a nerve with the public lately. I decided to try a novel approach to communicating my concerns about pseudoscience on the Internet – and presented 20 slides at 20 second intervals to a conference of ePatients in Philadelphia. I did it with powerful and humorous images, tied together with a long Limerick. Sound kooky? Maybe so… but it resonated, and was received with cheers and applause. Now that’s how we like science to be recognized! (more…)

Posted in: Cancer, Science and the Media

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The effective wordsmithing of Amy Wallace

One of the most engaging and clearly-written pieces of science journalism over the last year or so was published in Wired magazine last week. Now in the midst of a firestorm of attention, Amy Wallace’s, “An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All,” is part interview with rotavirus vaccine developer, pediatric infectious disease physician and immunologist, Dr Paul Offit, and description of the anti-vaccination movement in the United States.

Wallace’s work is the centerpiece of a masterful collection of smaller articles providing science-based information about vaccination that also refuts common anti-vaccination myths including “How To Win An Argument About Vaccines” and “The Misinformants: Prominent Voices in the Anti-Vaccine Crusade”.

Wired’s follow-up discussion of the issue includes, “A Short History of Vaccine Panic,” for those of us who “have a day job” and not enough time to read Paul Offit’s 2008 book, “Autism’s False Prophets.”
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Posted in: Public Health, Science and the Media, Vaccines

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Suzanne Somers’ Knockout: Dangerous misinformation about cancer (part 1)

If there’s one thing I’ve become utterly disgusted with in the time since I first became interested in science-based medicine as a concept, its promotion, and the refutation of quackery and medical pseudoscience, it’s empty-brained celebrities with an agenda. Be it from imbibing the atmosphere within the bubble of woo-friendly southern California or taking a crash course at the University of Google and, through the arrogance of ignorance, concluding that they know more than scientists who have devoted their lives to studying a problem, celebrities believing in and credulously promoting pseudoscience present a special problem because of the oversized soapboxes they command. Examples abound. There’s Bill Maher promoting anti-vaccine pseudoscience, germ theory denialism, and cancer quackery on his show Real Time with Bill Maher and getting the Richard Dawkins Award from the Atheist Alliance International in spite of his antiscience stances on vaccines and what he sneeringly calls “Western medicine.” Then there are, of course, the current public faces of the anti-vaccine movement, Jenny McCarthy and her boyfriend Jim Carrey, the former of whom thinks it’s just hunky dory (or at least doesn’t appear to be the least bit troubled) that her efforts are contributing to the return of vaccine-preventable infectious diseases because she apparently thinks that’s what it will take to make the pharmaceutical companies change their “shit” product (her words), and the latter of whom spreads conspiracy theories about vaccines and contempt on people suffering from restless leg syndrome. Finally, there’s the grand macher of celebrity woo promotion, Oprah Winfrey, who routinely promotes all manner of medical pseudoscience, be it “bioidentical” hormones, the myth that vaccines cause autism (even hiring Jenny McCarthy to do a blog and develop a talk show for her company Harpo Productions), or other nonsense, such as Christiane Northrup urging Oprah viewers to focus their qi to their vaginas for better sex.

Unfortunately, last week the latest celebrity know-nothing to promote health misinformation released a brand new book and has been all over the airwaves, including The Today Show, Larry King Live, and elsewhere promoting it. Yes, I’m talking about Suzanne Somers, formerly known for her testimonial of having “rejected chemotherapy and tamoxifen” for her breast cancer, as well as her promotion of “bioidentical hormones,” various exercise devices such as the Thighmaster and all manner of supplements. Her book is entitled Knockout: Interviews with Doctors Who Are Curing Cancer–And How to Prevent Getting It in the First Place. It is described on the Random House website thusly:
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Posted in: Book & movie reviews, Cancer, Science and the Media

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“Methodolatry”: My new favorite term for one of the shortcomings of evidence-based medicine

I’d like to thank revere right now publicly. He’s taught me a new word:

Methodolatry: The profane worship of the randomized clinical trial as the only valid method of investigation.

Many of you have e-mailed me and other SBM bloggers about a recent article in The Atlantic by Shannon Brownlee and Jeanne Lenzer, two reporters whose particular bias is that we as a nation are “over treated.” That may be true, although not to the extent that Brownlee, at least, seems to think, and her article on swine flu was truly biased and painful to read. Moreover, “methodalatry” perfectly describes one of the complaints we at SBM have about the “evidence-based medicine” paradigm. So I’m really glad that revere took it on and demolished it.

The hero of The Atlantic article, Tom Jefferson clearly has an agenda about flu vaccines. Indeed, he has such an agenda that he was invited to the National Vaccine Information Center’s vaccine conference in early October. The NVIC is the oldest and biggest antivaccine organization there is. Either he didn’t know that, in which case he’s clueless, or he didn’t care. In any case, it was clear that he was invited there because of his stance on flu vaccination, and he was even going to be awarded the NVIC “Courage in Science” Award. To his credit, Jefferson backed out when he found out that he would be sharing the stage with Andrew Wakefield, who was to be given the NVIC “Humanitarian Award.” He was appropriately horrified. Still, he should never have accepted in the first place, given that the NVIC clearly wanted to coopt him and use his gadfly status to make its anti-vaccine stance seem reasonable and science-based.

That’s just one reason why I don’t take Tom Jefferson particularly seriously anymore. I tend to agree with revere that Jefferson is drifting perilously close to crank territory with respect to flu vaccines. Indeed, “methodolatry” is an awesome term to describe his approach. Actually, it’s a great term to describe some of the Cochrane scientists responsible for analyzing the efficacy of mammography screening, as well; their conclusions and methods rather remind me of Jefferson’s.

Finally, you might also want to reread (or read for the first time if you haven’t read it already) Mark Crislip’s article on flu vaccine efficacy, which, although not directly written in response to Brownlee’s article, does address many of the shortcomings in its analysis of H1N1 vaccine efficacy.

Posted in: Science and Medicine, Science and the Media, Vaccines

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