Five weeks ago, when last I touched on the case of Sarah Hershberger, the now 11-year-old Amish girl from Medina County, Ohio near Akron with lymphoblastic lymphoma whose parents had taken her off of chemotherapy after only two rounds, reports had been coming out of the cancer quackery underground that Sarah’s parents, Andy and Anna Hershberger, had fled to avoid a court order that appointed a medical guardian for her to make sure that she received appropriate science-based therapy. At the time I was unable to confirm these stories in the mainstream press. However, over the last month there have been significant developments in this case and even over the last week; so I thought that now would be a good time to update SBM readers on developments in the case.
The Thanksgiving confirmation
One thing that I didn’t mention a month ago is that David Michael and others have been actively raising money to support the Hershbergers’ legal battles. Then, over the long Thanksgiving Day weekend news reports began to trickle out confirming what the “alternative” health sites had been reporting, namely that the Hershbergers had fled. These reports started with story from a local Medina newspaper, then spread to a northeast Ohio television stations, and then to national news sources (like Good Morning America and CNN) and international news outlets. The Medina Gazette first reported:
If there’s one medical treatment that proponents of “alternative medicine” love to hate, it’s chemotherapy. Rants against “poisoning” are a regular staple on “alternative health” websites, usually coupled with insinuations or outright accusations that the only reason oncologists administer chemotherapy is because of the “cancer industrial complex” in which big pharma profits massively from selling chemotherapeutic agents and oncologists and hospitals profit massively from administering them. Indeed, I’ve lost track of the number of such rants I’ve deconstructed over the years. Usually, they boil down to two claims: (1) that chemotherapy doesn’t work against cancer (or, as I’ve called it before, the “2% gambit“) and (2) that the only reason it’s given is because doctors are brainwashed in medical school or because of the profit motive or, of course, because of a combination of the two. Of course, the 2% gambit is based on a fallacious cherry picking of data and confusing primary versus adjuvant chemotherapy, and chemotherapy does actually work rather well for many malignancies, but none of this stops the flow of misinformation.
Misinformation and demonization aside, it is also important to realize that the term “chemotherapy,” which was originally coined by German chemist Paul Ehrlich, was originally intended to mean the use of chemicals to treat disease. By this definition, virtually any drug is “chemotherapy,” including antibiotics. Indeed, one could argue that by this expansive definition, even the herbal remedies that some alternative medicine practitioners like to use to treat cancer would be chemotherapy for the simple reason that they contain chemicals and are being used to treat disease. Granted, the expansive definition evolved over the years, and these days the term “chemotherapy” is rarely used to describe anything other than the cytotoxic chemotherapy of cancer that in the popular mind causes so many horrific side effects. But in reality virtually any drug used to treat cancer is chemotherapy, which is why I like to point out to fans of Stanislaw Burzynski that his antineoplastons, if they actually worked against cancer, would be rightly considered chemotherapy, every bit as much as cyclophosphamide, 5-fluorouracil, and other common chemotherapeutics.
Editor’s note: Due to technical difficulties, SBM experienced considerable downtime yesterday. I therefore decided to delay publishing this post until now. Harriet’s normally scheduled Tuesday post will also appear later.
I like to think that one of the more important public services I provide here at Science-Based Medicine is my deconstructions of alternative cancer cure testimonials. After all, one of the most powerful marketing tools purveyors of cancer quackery have in their arsenal is a collection of stories of “real patients” with cancer who used their nostrums and are still alive and well. These sorts of analyses of alternative cancer cure testimonials began right near the very beginning of my not-so-super-secret other blog way back in 2004, metastasized—if you’ll excuse my use of the term—to SBM in 2008, and have continued intermittently to this very day, most recently with a bevy of posts showing why the testimonials of Stanislaw Burzynski’s patients do not constitute good evidence that he can cure cancers considered incurable by “standard” medicine. In other words, Burzynski’s “success stories” aren’t the slam-dunk evidence he and Eric Merola want you to believe them to be regarding the use of antineoplastons to cure brain cancers.
Sometimes, these patients who believe that alternative medicine somehow cured their cancers are so transformed, so energized, that they basically devote their lives to selling, in essence, their story, along with all the stuff they did to “cure” their cancer. I just came across one such person, a man by the name of Chris Wark, whose website and blog Chris Beat Cancer sells the idea that he beat his cancer with nutrition and “natural therapies” that he used to “heal himself.” All of this wouldn’t be quite so horrible—after all, there are lots of people who believe in woo and say so publicly—except that Wark is now also selling all sorts of misinformation about cancer, at $175 for a two hour phone consultation. Regular readers will recognize right away where Mr. Wark goes wrong in his story. Even so, I think it’s worthwhile to take a look because since discovering Mr. Wark’s site I’ve seen his name popping up all over the place promoting “natural” cures, and his site has become a repository of all sorts of “alternative cancer cure” testimonials, as well as credulously promotional material for quackery like Gerson therapy, the Beck protocol, and the Gonzalez protocol.
First, let’s take a look at Mr. Wark’s story. Since his story is so simple to deconstruct, I’ll then look at more of the material on his website. Right on the front page of Mr. Wark’s website, there is a brief blurb about him that reads:
Three weeks ago, I mentioned in a post that the week of October 7 to 14 was declared by our very own United States Senate to be Naturopathic Medicine Week, which I declared unilaterally through my power as managing editor of Science-Based Medicine (for what that’s worth) to be Quackery Week. One wonders where the Senate found the time to consider and vote for S.Res.221, which reads:
S.Res.221 – A resolution designating the week of October 7 through October 13, 2013, as “Naturopathic Medicine Week” to recognize the value of naturopathic medicine in providing safe, effective, and affordable health care.
I know, I know, it probably took all of five minutes to consider and vote for this, thanks to Sen. Barbara Mikulski (D-MD), who sponsored it. In any case, as October 7 approached, I thought about how I could keep my promise to blog about naturopathy this week, and I came up with a way to do it. It’s a bit roundabout, but I think it fits. The idea derives from a discussion I was having a while back about one of my “favorite” hospitals, namely the Cancer Treatment Centers of America, in which a colleague of mine questioned why there were so many CTCA ads on NPR and why CTCA is sponsoring shows on PBS such as the upcoming The Emperor of All Maladies by Ken Burns. Although I can’t wait to see this particular series, I am a bit worried that the infiltration of quackademic medicine will make an appearance, given that CTCA is a major sponsor. (more…)
In medicine, particularly oncology, it’s often the little things that matter. Sometimes, however, the “little things” aren’t actually little; they just seem that way. I was reminded of this by a story that was circulating late last week in the national media, often under titles like “Obese cancer patients often shorted on chemo doses”, ”Are obese people with cancer getting chemotherapy doses too small for them?”, and “Obese Cancer Patients Not Getting Full Doses of Chemotherapy Drugs”. It’s also interesting to me because it stands in marked contrast to something I’ve written about a lot on this blog: The overtreatment of cancer. In this case, this story is about the undertreatment of cancer in patients who are obese, and it’s a problem that has definite adverse effects on an obese person’s odds of surviving cancer.
I’ve been aware of this issue for some time and had been thinking of blogging about it for at least three years. The reason is that the oncologist who is best known for sounding the alarm on this issue is Jennifer Griggs at the University of Michigan and, being local and all, I’ve seen her speak on the topic several times at local breast cancer conferences. Now that I work with a statewide breast cancer care quality improvement initiative, I’m becoming more aware of her work. Indeed, I was rather puzzled why this issue bubbled up enough to be reported widely on the national news last week when the Nature Clinical Oncology paper by Gary H. Lyman and Alex Sparreboom that drew attention to the issue was published in August, and the original American Society of Clinical Oncology (ASCO) guidelines were published last year. Whatever the reason this issue has been getting more attention, it’s a good thing.
(Skip to the next section if you want to miss the self-referential blather about TAM.)
As I write this, I’m winging my way home from TAM, crammed uncomfortably—very uncomfortably—in a window seat in steerage—I mean, coach). I had been thinking of just rerunning a post and having done with it, sleeping the flight away, to arrive tanned, rested, and ready to continue the battle against pseudoscience and quackery at home, but this seat is just too damned uncomfortable. So I might as well use the three and a half hours or so left on this flight to write something. If this post ends abruptly, it will be because I’ve run out of time and a flight attendant is telling me to shut down my computer in those cloyingly polite but simultaneously imperious voices that they all seem to have.
I had thought of simply recounting the adventures of the SBM crew who did make it out to TAM to give talks at workshops and the main stage and to be on panels, but that seems too easy. Even easier, I could simply post my slides online. But, no, how on earth can I reasonably expect Mark Crislip to post while he’s at TAM if I’m too frikkin’ lazy to follow suit? I’m supposed to lead by example, right, even if what comes out is nearly as riddled with spelling and grammar errors (not to mention the occasional incoherent sentence) as a Mark Crislip post? Example or not, lazy or not, I would be remiss if, before delving into the topic of today’s post, I didn’t praise my fellow SBM bloggers who were with me, namely Steve Novella, Harriet Hall, and Mark Crislip, for their excellent talks and insightful analysis. Ditto Bob Blaskiewicz, with whom I tag-teamed a talk on everybody’s favorite cancer “researcher” and doctor, Stanislaw Burzynski. It’ll be fun to see the reaction of Eric Merola and all the other Burzynski sycophants, toadies, and lackeys when Bob’s and my talks finally hit YouTube. Sadly, we’ll have to wait several weeks for that. (Hmmm. Maybe I will post those slides later this week.)
Well, I’ve finally seen it, and it was even worse than I had feared.
After having heard of Eric Merola’s plan to make a sequel to his 2010 propaganda “documentary” about Stanislaw Burzynski, Burzynski The Movie: Cancer Is Serious Business, which I labeled a bad movie, bad medicine, and bad PR, I’ve finally actually seen the finished product, such as it is. Of course, during the months between when Eric Merola first offered me an “opportunity” to appear in the sequel based on my intense criticism of Burzynski’s science, abuse of the clinical trials process, and human subjects research ethics during the last 18 months or so, there has been intense speculation about what this movie would contain, particularly given how Merola’s publicity campaign involved demonizing skeptics, now rechristened by Merola as “The Skeptics,” a shadowy cabal of people apparently dedicated (according to Merola) to protecting big pharma and making sure that patients with deadly cancers don’t have access to Burzynski’s magic peptides, presumably cackling all the way to the bank to cash those big pharma checks.
“Targeted therapy.” It’s the holy grail of cancer research these days. If you listen to its most vocal proponents, it’s the path towards “personalized medicine” that improves survival with much lower toxicity. With the advent of the revolution in genomics that has transformed cancer research over the last decade, including the petabytes of sequence and gene expression data that pour out of universities and research institutes, the promise of one day being able to a patient’s tumor, determining the specific derangements in genome and gene expression that drive its uncontrolled proliferation, and finding drugs to target these abnormalities seems more tantalizingly close than ever. Indeed, it seems so close that even dubious practitioners, such as Stanislaw Burzynski, have jumped on the bandwagon, co-opting the terms used by real oncologists and real cancer researchers to sell “personalized gene-targeted cancer therapy,” which in their hands are really no more than a parody of efforts to synthesize the enormous quantity of genomic data each patient’s tumor possesses and figure out how best to take advantage of it, a “personalized genomic therapy for dummies,” if you will.
That’s not to say that there aren’t roadblocks to realizing this vision. The problems to be overcome are substantial, and I’ve discussed them multiple times before. For example, just a couple of weeks ago I discussed an example of just what it takes to apply these new genomic techniques to an individual patient. The resources required are staggering, and, more problematic, there often aren’t any single “magic bullet” molecular pathways identified that can be targeted with existing drugs. The case I discussed was a fortunate man indeed in that such a pathway was identified, but most tumors are driven by many derangements in growth control, metabolism, migration, and the other hallmarks of malignancy described by Robert Weinberg. Worse, in many cases we don’t even have drugs that can attack many of the abnormalities that drive cancer progression. Then there’s the issue of tumor heterogeneity, which comes about because cancer is as good example of a disease as I can think of in which evolution due to natural selection results in incredible differences in the cancer cells in one part of the tumor compared to other parts of the tumor or in the tumor metastases. A “targeted” therapy that targets the genetic abnormalities in one part of the cancer might well fail to target the genetic abnormalities driving another part of the tumor.
These, and many other reasons, are why we haven’t “cured cancer” yet.
Over the last couple of weeks, I’ve been spending a lot of time (and, characteristically, verbiage) analyzing the phenomenon known as Dr. Stanislaw Burzynski and his “cancer cure” known as antineoplastons. In part I of this series, Stanislaw Burzynski: Bad medicine, a bad movie, and bad P.R., I used the legal threats against bloggers criticizing the credulous promotion by the British press of fundraising campaigns to send children with terminal cancer to the Burzynski Clinic and the promotion of the medical propaganda movie Burzynski The Movie: Cancer Is Serious Business to review the movie’s claims and look into Burzynski’s claims for antineoplastons. Not surprisingly, I found the evidence for extravagant claims for their anticancer effects unconvincing. In part II, Dr. Stanislaw Burzynski’s “personalized gene-targeted cancer therapy”: Can he do what he claims for cancer?, I looked into Dr. Burzynski’s recent efforts to “diversify his portfolio, in which he has apparently decided to ride the new wave of genomic medicine to claim he can do “personalized, gene-targeted cancer therapy.” I concluded that he does appear to do that, only very badly, in essence “making it up as he goes along.”
In this third and final part, I want to come back to antineoplastons, because it has been pointed out to me that there is an aspect of this story that has received little attention. One reader in particular has helped enormously in my education about this aspect of the Burzynski saga. I wish I could credit this person by name, but, for reasons I fully understand, I can’t. However, this person’s input was essential, and I’ve even appropriated (with permission, of course) a little bit of text here and there from our e-mail exchanges to “integrate” into this post. Putting this together with information in my previous posts, I think we can come to some conclusions about what it is that Dr. Burzynski is really doing.
Burzynski and an orphan drug
In the first part of this series, I pointed out that back in the 1970s Dr. Burzynski claimed to have discovered cancer-fighting substances in human urine, which he dubbed “antineoplastons,” claiming that patients with cancer had lower levels of these substances in their blood and urine. However, I was pretty vague about just what these substances were, other than to point out that they were modified amino acids and that since 1980 Dr. Burzynski has been synthesizing them in a chemistry lab rather than isolating them from urine as he had done up until then. This vagueness came simply from my interest in moving straight to looking at Burzynski’s claims rather than what these substances were. In retrospect, that might have been a mistake. The reason is that understanding what two of Burzynski’s antineoplastons are is critical to understanding what he is doing with them and why he might occasionally appear to be observing an antitumor response.