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Angelina Jolie, radical strategies for cancer prevention, and genetics denialism

I had been debating whether to blog about Angelina Jolie’s announcement last week in a New York Times editorial entitled My Medical Choice that she had undergone bilateral prophylactic mastectomy because she had been discovered to have a mutation in the BRCA1 gene that is associated with a very high risk of breast cancer. On the one hand, it is my area of expertise and was a big news story. On the other hand, it’s been nearly a week since she announced her decision, and the news story is no longer as topical as it was. Also, I’ve already written about it a couple of times on my not-so-super-secret other blog, making the division of blogging…problematic. So, if some of this is a bit repetitive to those who are also fans of my more—shall we say?—insolent persona, I apologize, but try to be patient. I will be doing more than just rehashing a couple of posts from last week (although there will unavoidably be at least a little of that), because there have been even more examples of reactions to Jolie’s announcement that provide what I like to consider “teachable moments.” I will start by asserting quite bluntly that in my medical opinion, from the information I have available, Angelina Jolie made a rational, science-based decision. How she went about the actual mechanics might have had some less than scientific glitches along the way (more about that later), but the basic decision to remove both of her breasts to prevent breast cancer associated with a BRCA1 mutation that she carried was quite reasonable and very defensible from a scientific standpoint.

One advantage of waiting nearly a week to write about this story is that it provided me with the opportunity to sit back and observe the reactions that Jolie’s decision provoked. One thing that I really didn’t expect (although in retrospect maybe I should have) is the pure denialism on display that genes have any effect whatsoever on cancer. I say “in retrospect I should have” because I’ve written at least a couple of times before about how quacks use and abuse the term “epigenetics” in the same way that they abuse the word “quantum” and how they seem to believe that wishing makes it so (through epigenetics, of course!) to the point where they believe that genetics is irrelevant to cancer. Indeed, they go far beyond that, asserting that, in essence, environment is all. From what I’ve been reading thus far, the second strongest strain of reaction to Jolie’s announcement (after revulsion at the “mutilation” of women that it represented to certain quacks) is pure denial that mutations in BRCA1 and BRCA2 genes portend such a high risk of ultimately developing breast cancer. This denial is often accompanied by conspiracy mongering about BRCA1 and BRCA2 mutations being a “conspiracy” on the part of the “cancer industry” and Myriad Genetics & Laboratories, the company that holds the patents on BRCA1 and BRCA2, to increase genetic testing and preventative mastectomies. Myriad happens to have a complete monopoly on BRCA1 and BRCA2 testing because of this patent and has been criticized for its high prices and stifling of competition. There is currently a case before the U.S. Supreme Court regarding whether human genes are patentable under the law. I’m not a big fan of Myriad, and I’ll tell you why later. (Not that it matters; I’m stuck with them for now.) My personal distaste for Myriad Genetics aside, this sort of conspiracy mongering is part and parcel of the quack approach to denying the significance of BRCA1 mutations.

This denial is usually coupled with confident blather that Angelina Jolie didn’t need to undergo “disfiguring” surgery to prevent BRCA1-associated breast cancer but instead could have achieved the same—or even better!—risk reduction if only she had used this magic herb or that miracle supplement and making certain “lifestyle” changes. It’s utter nonsense, of course, but it’s everywhere.

Before I get to the reactions to Jolie’s announcement, let’s first take a look at what she did, why, and the science behind it.
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Posted in: Basic Science, Cancer, Medical Ethics, Science and the Media

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The deceptive rebranding of aspects of science-based medicine as “alternative” by naturopaths continues apace

That naturopathy is a veritable cornucopia of quackery mixed with the odd sensible, science-based suggestion here and there is not in doubt, at least not to supporters of science-based medicine (SBM). However, what naturopaths are very good at doing is representing their pseudoscience as somehow being scientific and thus on par with conventional SBM. So how do they accomplish this? Certainly, it’s not through the validation of any of the cornucopia of pseudoscience and quackery that naturopaths apply to their patients as though picking “one from column A and one from column B” from a proverbial Chinese menu of woo. Naturopaths’ favored modalities include homeopathy (which remains to this day an integral part of naturopathy that all naturopaths are taught), acupuncture and traditional Chinese medicine (TCM), “detoxification” practices (a key precept of a lot of naturopathy) such as juicing, enemas, and chelation therapy, and the various other quack modalities that make up the practice of naturopathy. Treatments like these (especially homeopathy, whose precepts would require a massive rewriting of the laws of physics and chemistry for it to work) have not been and almost certainly cannot ever be scientifically validated with an evidence base of the quality and quantity supporting SBM.

So, instead naturopaths play a very clever game. In all fairness, naturopaths are not the only practitioners of so-called “complementary and alternative medicine” (CAM) or “integrative medicine” who play this game, but from my observations they appear to be the most talented at it. Their skill at obfuscating the line between SBM and naturopathy is evidenced by the success they have had in state legislatures in expanding their scope of practice, most recently in Colorado, where, if there is not a groundswell of support urging the Governor to veto SB-215 (or, as Jann Bellamy aptly called it, the quack full employment act), consumer protections against quackery in Colorado will be laid waste. At the same time, there is a naturopath licensing act (HB-1111) sitting on the Governor’s desk as well that would license naturopaths and give them the path to mandatory reimbursement from insurance companies. Instructions to write to the Governor opposing both bills can be found here and here; they would be disastrous for efforts to keep full vaccination in Colorado. A direct link to write the Governor can be found here.
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Posted in: Clinical Trials, Homeopathy, Naturopathy, Nutrition, Science and the Media

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The Sleep Bank

The following article is entirely made up. It’s satire. I am making fun of treatment modalities which are claimed by proponents to cure everything, from real medical ailments to fictional entities like “adrenal fatigue”. I am also poking fun at the state of medical reporting these days. If the concepts discussed seem similar to actual alternative medical practice, it is because a great deal of what goes on out there in the real world really isn’t distinguishable from purposefully outlandish fictional treatments made up by someone with a doctoral degree in Feng Shui from Thunderwood College. (more…)

Posted in: Humor, Science and the Media

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Too Much Information!

Some people would like to manage their own health care without having to depend on a doctor. They consult Google, diagnose themselves, and treat themselves. The Do-It-Yourself trend in lab tests continues apace. Without a doctor’s order, patients can get legitimate and/or questionable lab tests directly from various companies such as Any Lab Test Now and Doctor’s Data (which has sued Stephen Barrett for exposing their fraudulent “urine toxic metals” test on Quackwatch). Now a new company, Talking20, has jumped on the self-testing bandwagon with an innovative product that allows people to prick their finger, put a drop of blood on a card, and mail it in from anywhere in the world. Multiple tests are done on a single drop of blood. Results will be available online within a week or even sooner.
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Posted in: Computers & Internet, Diagnostic tests & procedures, Science and the Media

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Eric Merola’s conspiracy-mongering and more of Dr. Stanislaw Burzynski’s cancer “success” stories

About a month ago, Eric Merola screened his second movie about “brave maverick doctor” Stanislaw Burzynski, Burzynski: Cancer Is A Serious Business, Part 2 (henceforth referred to as “Burzynski II”), a screening that Brian Thompson and an unnamed colleague from the James Randi Educational Foundation (JREF) attended, took notes, and even managed to ask a question. At the time, I took advantage of Brian’s awesome commentary about his experience on the JREF Swift Blog, his copious notes, and my read on Eric Merola’s trailers for the movie, what he said in the first movie, and his own promotional material to write about how Merola dishonestly demonizes what he refers to as “The Skeptics” (i.e., us) and five major misconceptions about Burzynski, cancer, and skeptics promoted in Burzynski II, all with a heapin’ helpin’ of conspiracy mongering. In this post, I will delve into a little more detail about the fundamental intellectual dishonesty behind Eric Merola’s conspiracy mongering and discuss two of the cases being used to “prove” that Burzynski can cure cancer, mainly because they are appearing along with Merola on the publicity trail. Merola himself, thankfully (I guess) has allowed me to do this by posting an edited version of that original Q&A to YouTube:

In particular, note how everything I said in my previous post about what went on at the Q&A is verified, and, in fact, you now have the details. I will try to mention the specific time points to refer to as I go along. Also note that there is a segment at about the 47:45 mark in which JREF’s Brian Thompson (blurred out but still recognizable) speaks with the husband of one of Burzynski’s patients that is worth watching and that I will briefly discuss further into this post.
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Posted in: Cancer, Clinical Trials, Science and the Media

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The “no compassion” gambit

As usual, I was impressed with Mark Crislip’s post on Friday in which he discussed the boundaries between science-based medicine and what we sometimes refer to as woo or what Mark often refers to as sCAM. It got me to thinking a bit, which is always a dangerous thing, particularly when such thinking leads to my writing something for my not-so-super-secret other blog (NSSSOB). Of course, this is not my NSSSOB, but that doesn’t make it that much less dangerous. Be that as it may, I started thinking about a gambit I started noticing a few years ago being directed at me by the targets of my logorrheic deconstructions. Actually, I noticed it from the very beginning, when I first started blogging about SBM versus quackery way back in 2004 and even before, back when I was one of a doughty band of pro-science types who waded into the Wild West of online forums known as Usenet, in particular the misc.health.alternative newsgroup.

I happen to be in Washington, DC as I write this. In fact, as I write this I’m here to attend the annual meeting of the American Association for Cancer Research (AACR), the better to soak in all that cancer science goodness and (hopefully) be pumped up to go back and keep trying to do good science and, hopefully, manage to get my lab funded. Of course, the latter task is a really daunting these days, a truly depressing thing to contemplate, given that the current payline for the National Cancer Institute is around the 7th percentile, which makes me worry about how much longer my lab will be open. My self pity aside, Mark got me to thinking about the characteristics of purveyors of non-science-based medicine (i.e., quackery and quackademic medicine) compared to SBM. More precisely, I started thinking about a difference that what Mark calls sCAMmers try to pin on those of us who try to defend SBM against the forces of pseudoscience. To introduce this concept, I think it’s worth going back a few years to a comment I got a long, long time ago on a blog far, far away (i.e., my NSSSOB):

When it comes to autism, you seem to have lost something that I think every physician is well-served to have in abundance: compassion.

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Posted in: Cancer, Health Fraud, Public Health, Science and the Media, Vaccines

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Once more into the screening breach: The New York Times did not kill your patient

One of the more depressing things about getting much more interested in the debate over how we should screen for common cancers, particularly breast and prostate cancer, is my increasing realization of just how little physicians themselves understand about the complexities involved in weighing the value of such tests. It’s become increasingly apparent to me that most physicians believe that early detection is always good and that it always saves lives, having little or no conception of lead time or length bias. Sadly, just last week, I saw another example of just this phenomenon in the form of an article written by Dr. George Lombardi entitled My Patient, Killed By The New York Times. The depth of Dr. Lombardi’s misunderstanding of screening tests permeates the entire article, which begins with his recounting a story about a patient of his, whose death he blames on The New York Times. After describing the funeral of this 73-year-old man who died of prostate cancer, Dr. Lombardi then makes an accusation:

This one filled me with a special discomfort as I knew a secret: He didn’t have to die. I knew it and he had known it. Had he told?

About 5 years ago he had just retired and had a lot more time on his hands. He was a careful man, lived alone, considered himself well informed. He got into the habit of clipping articles on medical issues and either mailing them to me or bringing them in. They came from a variety of sources and were on a variety of topics. He wasn’t trying to show me up. He was genuinely curious. I kidded him that maybe he’d like to go to medical school in his retirement. ‘No’ he laughed, ‘I just like to be in the know.’

When he came in for his physical in 2008 he told me he’d agree to the DRE but not the PSA (his medical sophistication extended to the use of acronyms: DRE stands for digital rectal exam where I feel the prostate with my gloved finger for any abnormality and PSA for prostatic [sic] specific antigen which is a blood protein unique to the prostate and often elevated in prostate cancer). He had read that the use of PSA as a screening test was controversial. This was the year that the United States Preventive Services Task Force, a government panel that issues screening guidelines, recommended against routine PSA screens for older men. It was often a false positive (the PSA was elevated but there was no cancer), led to unnecessary biopsies, and besides most prostate cancers at his age were indolent and didn’t need to be treated. I countered that prostate cancer was the second leading cause of cancer deaths in men and that it was better to know than not to know. This way it would be our decision. The patient with his doctor deciding what was best. But no, he wanted to stick to his guns and since the DRE was normal no PSA blood test was sent.

After describing a conversation with the man’s daughter, who said, “My father was killed by The New York Times,” Dr. Lombardi then goes on to anecdotal evidence and a cherry-picked publication to support his view, quoting an oncologist who says he’s “seeing more men presenting with advanced prostate cancer” and then referring to a single paper in the current Annals of Internal Medicine about PSA screening. Before I look at the article and a recently published paper on screening mammography that made the news, I can’t help but point out that I (mostly) agree with Dr. Lombardi when he says:

Public health doctors, policy experts and journalists tend to look at the population as a whole. It is a better story if it is one story. It makes a better headline. Their statistics are people I sit across from everyday trying to figure out what the future holds. We each have our job to do.

The problem is, of course, that Dr. Lombardi takes that observation and draws the wrong conclusion, namely that his patient died because of lack of screening. He attacks a straw man, sidestepping the true argument, namely that evidence shows that PSA screening probably causes more harm than good for men at average risk of prostate cancer. Unfortunately, Dr. Lombardi obviously does not understand some very basic concepts behind cancer screening, nor does he apparently recognize that doctors who deal with the population-level data that we have regarding screening tests and try to apply them to individual patients are actually looking in a very systematic way about what the benefits of screening are to the individual patient. More on that later. In the meantime, although I wouldn’t go quite as far as Dr. John Schumann did in criticizing Dr. Lombardi, I do view his lament as a jumping off point to look at some recent data on screening for the two most common cancers, breast and prostate.

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Posted in: Cancer, Diagnostic tests & procedures, Politics and Regulation, Public Health, Science and the Media

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Burzynski: Cancer Is A Serious Business, Part 2: Like the first Burzynski movie, only more so?

Film producer Eric Merola seems to think that there is a conspiracy of skeptics (whom he calls The Skeptics) who are fanatically hell-bent on harassing his hero, Brave Maverick Doctor Stanislaw Burzynski. According to his latest film Burzynski: Cancer Is A Serious Business, Part 2 (henceforth referred to as Burzynski II, to distinguish it from part 1, to which I will refer as Burzynski I), there is a shadowy cabal of Skeptics out there just waiting to swoop down on any Burzynski supporter who has the temerity to Tweet support for him, any cancer patient being treated by Burzynski who Tweets or blogs about it, and any cancer patient even thinking about going to the Burzynski Clinic. I know this because he’s made it very clear in the promotional materials of his movie that that’s what he thinks and that skeptics were going to be the main target of his “film making” in his latest hagiography devoted to Stanislaw Burzynski. Very clear indeed. And, given how ham-fisted he was in his conspiracy mongering in Burzynski I, I’d be lying if I didn’t admit that I was at least a little concerned, because Merola made an explicit promise to “name names.” So were some other skeptics. After all, Merola isn’t exactly known for intellectual honesty (or even talent) in film making. We expected a heavy duty sliming, and curiosity (not to mention concern over our reputations) made us very—shall we say?—curious about what Merola was going to say about us.

So it was with great interest that I learned that Burzynski II was going to be screened at a film festival in San Luis Obispo last weekend. Its DVD release having been delayed from March 5 to July 1, I had thought that my curiosity about the contents of the movie would probably have to wait, and it will, at least as far as seeing the movie. A review of the movie suggested dark insinuations about Burzynski critics abounded, but that was not enough. Fortunately, a small posse of skeptics, lead by the intrepid Brian Thompson, made posthaste for San Luis Obispo. When the reports and copious handwritten notes in perfect encoded reptilian script came back, however, I was faced with a problem. How does one review or discuss a movie second-hand? How does one report on a movie that one hasn’t seen, about which one has to trust the powers of observation (and not to mention the note taking capabilities) of someone else, no matter how well briefed beforehand about what to look for? I decided that there was only one thing to do, and that’s just to go ahead and do it. I realize that there are likely huge swaths of information missing, but I definitely got a flavor of the movie from Brian’s detailed account plus discussions, and a definite idea of how it is going to be promoted from what was reported to have been said during the Q&A. Then I’ll discuss each of these points, thus inflating the rather thin observations I have from our Skeptics into a real post. Unfortunately, more detail from me will have to wait until the official release of the movie, or until such a time as Merola tries to bring the movie to somewhere in my neck of the woods. (Wouldn’t that be amusing?)

So here are the five things I learned (secondhand) from the Burzynski II screening, thanks to The Skeptics.
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Posted in: Cancer, Clinical Trials, Science and the Media

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Three myths about Stanislaw Burzynski and The Skeptics

As I finished last week’s post, I promised myself that I wouldn’t write about Stanislaw Burzynski again this week. After all, counting this post I will have done 13 posts so far in 2013, and, counting this one, four of them will have been about Burzynski, and three out of the last five posts (three out of four, really, if we eliminate my blatant self-promotion for the talk I gave to the National Capital Area Skeptics over the weekend). It’s the same sort of thing that I sometimes comment about over at my not-so-super-secret other blog when seemingly all my posts are about the antivaccine movement for days at a time. Still, as Michael Corleone said in The Godfather, Part III (admittedly the weakest of the Godfather movies), “Just when I thought I was out…they pull me back in.” Except, I guess, that I never really was out and, as long as Burzynski’s propagandist is coming after skeptics, myself included, I’ve come to the reluctant conclusion that I can’t be out for a long time.

Besides, with the first screening of the Burzynski sequel, Burzynski: Cancer Is Serious Business, Part II (which I’ll simply call Burzynski II, given Eric Merola’s penchant for long titles with multiple subtitles) at the San Luis Obispo International Film Festival yesterday, it looks as though I will find myself on the receiving end of what, from what I can gather, will be a withering and deceptive campaign of personal attack directed against myself and other skeptics who are critical of Burzynski’s treatments and methods. Like Josephine Jones, I can’t help but admit to feeling a little trepidation over this. Meanwhile, given that the Burzynski movie is now finding its way out into the wild, I thought it would be worthwhile to compare the myth-making about Burzynski in the movie with reality. There are so many myths being perpetuated by Merola and Burzynski, so I thought I’d take on three of the most flagrant ones. At some point, once I know the nature of the attacks against me, I will have to respond to specific allegations. Unfortunately, that might not be possible until after the DVD release in July. However, for now, I hope to make this post a resource that takes on the most blatant examples of exaggeration, cherry picking, and spin likely to be in the movie. Hopefully after that I can leave this topic alone for a while and explore more of the big wide world of science-based medicine and offenses against it.
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Posted in: Cancer, Science and the Media

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Dr. Stanislaw Burzynski’s cancer “success” stories update: Why is the release of the Burzynski sequel being delayed?

It’s no secret that I happen to be on several mailing lists of groups or doctors whose dedication to science is—shall we say?—questionable. Of course, the reason I join such mailing lists is to keep my finger on the pulse of pseudoscience, so to speak. Between such lists and strategically selected Google Alerts (the latter of which appear to be failing me these days), I’m usually aware of potential blogging material fast on selected topics that have become my bailiwick on this blog. So it was that I became aware on Saturday of a development regarding the movie about Stanislaw Burzynski that was going to be released direct to DVD this week.

I wrote about this “documentary” a couple of weeks ago, because it had become pretty clear that a significant part of the movie will be dedicated to a PR counterattack (more like a smear job) on skeptics who have been critical of Burzynski, criticism that apparently goaded him to use a rather unhinged individual by the name of Marc Stephens to threaten skeptical bloggers who had written posts critical of Burzynski’s science (more appropriately, his lack of science), and his proclivity for charging patients huge amounts of money to be in clinical trials, a practice that is in general considered at best questionable. The brouhaha in the blogosphere led me to pay attention to Burzynski in a way that I hadn’t before. Sure, I had heard of him, but I hadn’t really delved deeply into his claims. That situation was rectified in late 2011, as I reviewed the first propaganda movie made about Burzynski by Eric Merola, Burzynski The Movie: Cancer Is Serious Business. As I delved deeper, I learned that Burzynski’s evidence for the anticancer efficacy of his “antineoplaston therapy” doesn’t hold up; that his “personalized gene-targeted cancer therapy” is anything but personalized or gene-targeted; and that he’s using an orphan drug now in what appears to me to be a strategy to bypass restrictions on his use of antineoplastons that he agreed to in a consent agreement with the Texas Attorney General back in 1998 that allow him only to use these drugs as part of a valid clinical trial.

So I awaited the approach of this week with a mixture of anticipation and trepidation; anticipation because I wanted to see what sort of bizarre new conspiracy theories (or new twists on old conspiracy theories) that Merola could weave, and trepidation because I don’t know how badly Merola will trash me (and people I know) in his movie and such attacks could cause me difficulties. Suffice to say, it looked very much as though Merola was going to resurrect Jake Crosby’s scurrilous attacks against me from three years ago. So it was with great surprise that I read this e-mail on Saturday morning, sent to the Burzynski Movie mailing list:

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Posted in: Cancer, Clinical Trials, Science and the Media

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