This is a man known for not being—shall we say?—shy about using and abusing any celebrity cancer or health story that he comes across in the vilest way his fevered little brain can imagine to promote his favored quackery. He did it, for instance, when Patrick Swayze had pancreatic cancer. Swayze also had the temerity (and smarts) to say that he was eschewing quackery and sticking with science-based medicine, thank you very much:

If anybody had that cure out there, like so many people swear they do, you’d be two things. You’d be very rich, and you’d be very famous. Otherwise, shut up.

This, not surprisingly, infuriated Adams, who wrote up quite the tirade about it. Adams was similarly quick to pounce on the deaths of Michael Jackson of a drug overdose, the death of former Bush administration press secretary Tony Snow of colon cancer, and Tim Russert’s death from heart disease. Then, of course, he worked himself into a fine lather of righteous indignation over her “maiming” when Christina Applegate announced that she had undergone bilateral mastectomies for her breast cancer, who also had a BRCA mutation. So you can only imagine what sorts of vile article Adams came up with in response to Jolie’s decision to undergo bilateral mastectomy as a preventative measure, even though she didn’t have cancer yet. Yes, you can tell a lot by the title, Angelina Jolie inspires women to maim themselves by celebrating medically perverted double mastectomies.

Say what you will about Mikey. He’s consistent. Consistently vile. He’s also dead wrong, as usual.

First, you need to take note. The purpose of this article is blatant, and it’s to sell stuff. After Adams has seemingly gotten his readers all fired up over the horror of Jolie’s decision to “maim” herself, the very last section of the article advertises this:

Inform yourself and you can protect your body from the insane, knife-wielding cancer surgeons. Get the New Cancer Solutions CD set and empower yourself with real answers rather than cancer industry disinformation and deadly propaganda.

It comes complete with a video (included in Adams’ despicable article) that has to be seen to be believed, entitled The female anatomy of Modern Medicine. In any case, the CD includes a talk by Adams himself entitled The Consciousness of Cancer, which is billed as a “new way” of looking at cancer. No doubt it is, but also no cout it is a way that has nothing to do with science. From the title, my guess is that Adams subscribes to something similar to the German New Medicine or Andreas Moritz’s “wisdom of cancer cells” quackery, in which cancer is represented as a survival mechanism. There are also talks by “luminaries” of the “integrative” oncology and alternative cancer cure world, such as Thomas Lodi, Keith I. Block, and Richard Linchitz. It all looks to be a lot about “detoxification” and woo. (One notes that the Pink Lotus Breast Center, where Jolie had her surgery, is not above capitalizingon her announcement either, with a prominent splash page with a picture of her and a link to the details of her decision.”

Now that that point is out of the way (and it’s arguably the most important point, which is why I skipped to the end of Adams’ screed first), Let’s get a real taste of what Adams thinks, if you can stand it and if you can call it “thinking”:

Angelina Jolie announced yesterday that she had both of her breasts surgically removed even though she had no breast cancer. She carries the BRCA1 gene, and she has been tricked into believing that genetic code is some sort of absolute blueprint to disease expression — which it most certainly is not. Countless millions of women carry the BRCA1 gene and never express breast cancer because they lead healthy, anti-cancer lifestyles based on smart nutrition, exercise, sensible sunlight exposure and avoidance of cancer-causing chemicals.

Jolie, like many other women who have been deluded by cancer quackery, decided the best way to prevent the risk of breast cancer was not to lead a healthy, anti-cancer lifestyle, but rather to surgically remove her breasts in what she describes as “three months of medical procedures.”

…just in case, you know. Because you can never be too careful these days, with the cancer industry scaring women half to death at every opportunity. “My breasts might murder me!” seems to be the slogan of many women these days, all of whom are victims of outrageous cancer industry propaganda and fear mongering.

And later:

Oh, what a mess Jolie has made of herself. She has maimed her own body with no medical justification whatsoever, then celebrated this horrible disfiguration through some sort of twisted perception of what womanhood really is. Being an empowered woman doesn’t mean cutting off your breasts and aborting live babies — even though both of these things are often celebrated by delusional women’s groups. Being an empowered woman means protecting your health, your body and your womanhood by honoring and respecting your body, not maiming it.

And, the “coup de grace”:

Wonderful? To cut off parts of your body that have NO disease? With this logic, abortions are cancer prevention, too, because those babies might one day grow up and develop tumors. Better to kill them early and “prevent cancer,” right?

The mind boggles.

One can’t help but note that Adams is indulging in a favorite pastime of quacks every where: Denialism of genetics and wishful thinking that genetics don’t rule. OK, it’s true that in some cases they don’t. If a gene doesn’t have a high penetrance, interacts with other genes, or has an activity that is highly influenced by environment, genetics isn’t always destiny, but in the case of the particular BRCA1 mutation that Jolie reports having, there is an 85% lifetime risk of developing breast cancer. Given that breast cancer is a type of cancer that is not highly lifestyle- and diet-dependent (note, that is not to say that lifestyle and diet have no effect, just that the effect tends to be relatively small), no amount of “anticancer lifestyle, “smart nutrition,” and “avoidance of cancer-causing chemicals” is going to lower that 85% chance of breast cancer by very much, no matter how much Adams’ wishful thinking might try to mislead other women that such interventions can.

Now, it needs to be pointed out here that a BRCA1 mutation, such as the one that Jolie had, is a very special situation, where the risk of cancer is known and very high. I’m normally not a fan of prophylactic surgery, and I tend not to do bilateral mastectomies in my practice except under certain circumstances (such as BRCA1 mutations). Few women fall into that category, and, mutation carriers aside, there is no good evidence that doing bilateral mastectomies for breast cancer improves overall survival and decreases the odds of a woman dying of breast cancer. Personally, I’ve been rather disturbed at how much the demand for bilateral mastectomies has been driven by patients; it hasn’t really been driven by physicians. In this, I’m mostly in agreement with Monica Morrow, one of the most prominent breast surgeons there is, when she says:

“It’s important to make it clear that a BRCA mutation is a special, high-risk situation,” said Dr. Monica Morrow, chief of the breast service at Sloan-Kettering. For women at very high risk, preventive mastectomy makes sense, but few women fall into that category, she said.

For women’s health advocates, the trend toward double mastectomies in women who do not have mutations is frustrating. Studies in the 1970s and 1980s proved that for many patients, lumpectomy was as safe as mastectomy, and the findings were seen as a victory for women.

Even so, there is increasing demand for mastectomy. Dr. Morrow says that she has often tried to talk patients out of it without success. Some imagine their risk of new or recurring cancer to be far higher than it really is. Others think that their breasts will match up better if both are removed and reconstructed.

And it’s true. Jolie is a special case. We don’t see too many BRCA1 carriers. In Jolie’s case, bilateral mastectomy was entirely appropriate and medically indicated. That’s not always the case for a lot of bilateral mastectomies that are being done these days. Not surprisingly, part of what drove Jolie’s decision was the death of her mother at a young age (56). In any case, I’m not alone in being a bit worried that this announcement will provoke a run of patients demanding what Angelina Jolie had, regardless of whether it’s appropriate or not. Expressing concern about that, as some breast surgeons have in the wake of Jolie’s announcement, however, is not what Adams is about. He is about portraying modern medicine as “maiming” women and implying that it is surgeons who are promoting bilateral mastectomy when in fact the vast majority of us are not. Indeed, the drive over the last 30 years has been towards increasingly less invasive surgery for breast cancer (a trend driven, I would point out, not just by breast cancer advocates but by science and surgeons themselves, at the cost of revenue, given that larger surgeries like mastectomies are certainly better reimbursed than smaller surgeries).

There are also other issues brought up by Jolie’s decision. For instance, the way she went about it is not entirely science-based. If you peruse the blog post describing the process, you’ll find that she underwent a “nipple delay” procedure, in which the tissue underlying the nipple is cut in order to rule out cancer right behind the nipple and to “improve the blood flow.” The idea is that the nipple delay procedure cuts the normal blood supply to the nipple and “forces” it to rely on the surrounding skin for its blood supply, thus making the chance of nipple necrosis (in which the nipple turns black and falls off due to low blood flow) much less likely. It’s a procedure for which the evidence, in my estimation, is fairly shaky at best and is usually reserved only for patients who have had previous breast surgery around the nipple. After the surgery, Jolie apparently used a whole bunch of supplements at the instruction of the Pink Lotus Breast Center (which is apparently very much into “holistic medicine“), including vitamin C and a homeopathic remedy, Arnica Forte, which, it is claimed, improves wound healing. In her editorial describing her journey, Jolie herself writes:

I acknowledge that there are many wonderful holistic doctors working on alternatives to surgery. My own regimen will be posted in due course on the Web site of the Pink Lotus Breast Center. I hope that this will be helpful to other women.

Another issue to discuss might have to wait, as this post is getting long, and I need to wrap it up. (I might revisit this issue again next week on my not-so-super-secret other blog that has my real name on it, not unlike The Name of The Doctor.) Specifically, that’s the issue of BRCA1 testing itself. Myriad Genetics holds the patent on all BRCA testing, which means that it holds a monopoly on the process. No other gene test for BRCA1 is legal right now because Myriad holds the patent on the genes BRCA1 and BRCA2. There’s also the issue of Jolie’s extreme wealth, which provides her options average women don’t have, given that insurance companies will sometimes not pay for BRCA testing and preventative surgery. These might well be the topic for another post. In the meantime, contrary to Adams’ spew otherwise, Jolie made a reasonable, medically justifiable decision based on her family history. The only question I have remaining is whether she will remove her ovaries too (no mention was made of it in her op-ed).

That, and how Mike Adams can live with himself, but that’s a question I’ll probably never have the answer to.

Image of atopic dermatitis from www.itchfreepet.com

Dr. Kerstin Lindblad-Toh at Uppsala University (Sweden) who specializes in comparative genomics and Dr. Åke Hedhammar, SLU (Sweden) recently identified a novel gene in German shepherd dogs, PKP-2, that encodes a protein (plakophilin-2) important for regulating proper skin structure and function. This protein was found to be associated with canine atopic dermatitis (i.e. doggy eczema), a condition that affects 3-10% of man’s best friends. Researchers hope that the discovery of this gene relationship may lead to better understanding of, and novel treatments for, eczema in both dogs and the 10-30% of humans who share this condition.

Source:

Uppsala University press release

As I explored, however, I learned that the documents there were not so much about Stanislaw Burzynski per se. In fact, they were more about the state of the underground “alternative cancer cures” industry in the late 1970s, which interested me greatly. The reason is that, when it comes to having delved so deeply into cancer quackery, I’m a relative newbie. Compared to, for example, Wally Sampson, Stephen Barrett, Peter Moran, or even Kimball Atwood, I’m inexperienced, having only noticed this phenomenon in a big way in the Usenet newsgroup misc.health.alternative back around 2001 or so, give or take a year. As a result, I don’t have the shared historical perspective that they do, mainly because I can only learn about that era from reading, studying, and talking to people who were active then. After all, in the late 1970s I was still in high school, and in the 1980s I was in college and medical school. There was no Internet (at least none that I had access to and that contained the wealth of easily accessible information to which we have become accustomed). In any case, in high school I had other interests, and throughout the 1980s I was too focused on getting an education and training to be a surgeon and researcher, a process that extended into the late 1990s. (Yes, it takes that long sometimes, particularly if you are masochistic enough to want to get a PhD, complete a general surgery residency, and do a fellowship in surgical oncology.)

The articles I came across were actually from a rather surprising source: Penthouse magazine. I suppose that, in retrospect, I should not be quite so surprised. Penthouse publisher Bob Guccione was apparently always into dubious cancer cures, later in 1995 having achieved some notoriety by promoting claims that hydrazine sulfate had cured his wife Kathy Keeton of metastatic breast cancer. Ultimately Keeton did go on to die of complications of surgery for upper intestinal obstruction, which sounds as though it was probably due to a recurrence of her cancer. Before her death, Keeton was a journalist and co-founder of Omni and Longevity magazines, the former of which, I’m ashamed to admit, I used to read rather frequently. In any case, she appears to have been a person who survived longer than expected while being treated with conventional therapy (Tamoxifen) and hydrazine sulfate, surviving two years after her diagnosis, which is certainly not outside the expected survival time for metastatic breast cancer in the 1990s, particularly if it was estrogen-receptor positive.

Be that as it may, back in the fall of 1979 I was in high school, and if I got my hands on a copy of Penthouse magazine, you can be sure that I probably wasn’t interested in the articles, with the possible exception of the Penthouse Forum. (What can I say? I was a typical teen in the late 1970s.) In any case, back at that time I would also never have heard of one of the co-authors of this trilogy of articles, namely Gary Null, who is still at it more than 33 years later. The articles appeared in the following issues of Penthouse (click on the cover to go to the direct link to scanned PDF of the article from the UCSF Legacy Tobacco Documents Library (fear not—what’s on the covers is tamer than what you can find in a typical Sports Illustrated swimsuit issue; it’s another way that times have changed over the last three decades):

The Song Remains the Same, although the names do change

The first article in the trilogy, The Great Cancer Fraud by Gary Null and Robert Houston, is as good a place to start as any. It’s the longest of the three and the most comprehensive (if you can call it that) broadside against conventional cancer care that Gary Null can apparently muster. If you leave out a couple of the quackeries that I had never heard of, it’s also completely, utterly, and depressingly familiar to me, so much so that all Null would have to do would be to change some dates, update some figures, and add a couple of newer cancer quackeries, and it could very easily be published today on Null’s website, NaturalNews.com, or Whale.to. If you want evidence that the arguments made by promoters of “alternative cancer cures” are all variations on the same theme, a theme unchanged for decades, you really do need to read this article. It’s also amusing to look at the one ad left in for adult movies offering five Marilyn Chambers hardcore videos on sale for $366, marked down from $525. Who remembered porn was so expensive back in 1979? I just hope people who paid that much didn’t buy the Beta version. Oh, the horror of obsolescence!

But I digress. Sorry about that. I’m like Dug the Dog sometimes, and you never know what sort of thing will affect me like the word “squirrel” affected Dug.

Regular readers of SBM will likely find this article as utterly familiar as I did, with the possible exception of the last section of the article being taken up by touting Laetrile, which is rarely mentioned in SBM because in 2013 even cancer quacks don’t promote it much anymore, because even they seem to have accepted that it doesn’t work and can have nasty side effect of cyanide toxicity. (Whoops! Maybe I spoke too soon.) Indeed, if you read the Quackwatch article on Laetrile and compare it with the version of Laetrile discussed in Null’s article, you’ll wonder if the two are even on the same planet. Probably not. Either way, truly The Great Cancer Fraud is a blast from the past, except that when it was published, Gary Null was a young quackery supporter just building his reputation, and Laetrile was actually new news, having gained some traction in legislation thanks to the efforts of an incipient “health freedom” movement. (Remember, after all, that 1979 was the year that Led Zeppelin released its last album, In Through the Out Door, and The Cars released their second album, Candy-O.) Still, it’s worthwhile to look at some of the arguments and one or two of the “alternative cancer cures” that I hadn’t heard of.

Null began, as is his wont, by discussing what he saw as the skyrocketing incidence of cancer, which at the time was estimated to affect one in four people, meanwhile trotting out what are now tried-and-not-so-true gambits, lamenting the “failure” of the war on cancer (which was not even eight years old when this article was published), ranting about the “suppression” of real cures, and insinuating all sorts of dire conspiracies of the medical establishment and the media, which, to him, were all in collusion, along with the government to push only the “cut-poison-burn” approach to cancer. Actually, according to Null, the combination included the National Cancer Institute, the American Medical Association, “powerful chemical and drug industries,” the American Cancer Society, the Food and Drug Administration, and “many science writers who work for the national media.” This latter part of the conspiracy is particularly interesting to me, because my fellow bloggers and I have often lamented the fall of science writers and science/medical reporters in the “traditional” media. Remember that back then there was no Internet (at least the Internet at the time was restricted to relatively few academic, industrial, and military institutions), and there was no World Wide Web. Nor were there blogs and Twitter and Facebook. Science writers and science journalists were it for disseminating reliable scientific information to the masses in a form that people without scientific training could understand. No wonder Eric Merola, in his propaganda movie for Stanislaw Burzynski, so viciously goes after skeptical bloggers. He’s only doing exactly what Gary Null did 33 years ago when he attacked science and medical writers. As science journalism declined, science and medical blogging rushed in to fill the void as best as it could. So now we’re the new targets of people like Gary Null.

In fact, Null accused the American Cancer Society of, in essence, training journalists:

Let us look at how the cancer establishment influences these reporters — and then see how the reporters go into action to quash new cancer treatments.

The action begins every spring, when the American Cancer Society, one of the largest “charitable” organizations in the world, holds its national Science Writers’ Seminar at a resort locale. Here, selected health reporters from the leading media are soireed and surfeited in poolside luxury — a luxury that bespeaks the $126 million the ACS raised last year from the public — and slipped rah-rah cancer progress stories from acceptable researchers. The American Cancer Society seminars are essentially the spring fashion shows of cancer research, letting health and science reporters know where the big money’s going — although in actuality the expense has yielded almost complete failure at reducing the overall mortality level. There is always a “breakthrough” or two announced, and this right around contribution time, which nearly and coincidentally dovetails with the science writers’ conference.

Who knew the American Cancer Society was so powerful? Who knew it indoctrinated generations of health and science writers like that? What horrible things and dark secrets did the ACS inculcate into the science writers of the 1970s at these conferences? Well, it turns out that the UCSF archive actually has a summary of one of these seminars, the one held in 1975. Let’s take a look. According to the document, the seminar consists of daily morning and afternoon sessions in which noted cancer scientists give presentations followed by Q&A sessions, along with a general discussion after the end of each session. In 1975, there were sessions on genetics, the meaning of “high risk” when it comes to cancer, viruses in cancer (a hot topic even back in the 1970s), immunotherapy, hormones and breast cancer, and treatment advances in cancer. It all sounds so mundane and science-based. Of course, that’s the problem to someone like Null. Teaching journalists the latest in the science of cancer is generally considered a good thing, because journalists with a solid understanding of what they are reporting are more likely to get the science right, which is exactly what Null didn’t want and doesn’t want to this day. To him, it was all a conspiracy to indoctrinate science writers. Elsewhere in the article, Null lauds the rise of “self help” groups and writers as an antidote to that, the same way quacks laud the rise of alt-med bloggers today.

The more things change…

Does ACS still hold its Science Writers’ Seminar? I could see that the ACS was still doing them at least into the late 1990s, but I couldn’t find much after that. Maybe the ACS should resurrect the seminar series and include bloggers as well.

Null also touted a bunch of the usual quackery, such as the Gerson therapy, which is nonsense. One thing that piqued my interest was a treatment called Koch’s Glyoxylide. The reason that this caught my attention was the local connection. Dr. William F. Koch was a Detroit physician, and Null was particularly incensed at how the Wayne County Medical Society wrote a report in 1923 condemning Glyoxylide as worthless:

Koch’s work was judged and condemned to be worthless by the “Cancer Committee” of the Wayne County Medical Society in 1923 — a committee made up for the most part of surgeons and radium or X-ray “experts,” a class of people that assumed cancer to be curable only by these methods. As a result, both Koch and his cancer treatment were suppressed, and the oppression extended to the other doctors who attempted to use his methods in any kind of test.

Good going, Wayne County Medical Society! It apparently correctly identified the issue with glyoxylide, namely that it probably didn’t exist as a chemical and that his methods didn’t appear to do anything for cancer. The story of glyoxylide is actually rather fascinating, and perhaps I’ll revisit it sometime. For now, however, it suffices (to me at least) to say that it doesn’t work.

In that, glyoxylide was a lot like Lincoln’s Bacteriophage Method, which was promoted by Dr. Robert E. Lincoln:

Lincoln identified bacterial strains as contributing factors in hundreds of perplexing disease symptoms plaguing the human body, symptoms ranging from tiredness to leg cramps to mental depression to the common cold — and, ultimately, to cancer. In the late forties, Lincoln isolated two such strains of pathogens and with various diseases achieved a successful cure rate by using certain viruses (bacteriophages) against them. One cured cancer patient was the son of Sen. Charles Tobey, who spread the word about Lincoln’s therapy.

In 1952, after Lincoln was expelled from the Massachusetts Medical Society, Senator Tobey became so incensed that he presented the particulars to Congress: (1) in 1946 the Journal of the American Medical Association rejected Lincoln’s paper on clinical results with his ‘antibiotics”; (2) in 1948 the same paper was rejected by the New England Journal of Medicine; (3) in 1948 the director of a large Boston hospital was “unable to find the time” to review Lincoln’s work, after being invited to do so; and (4) Lincoln’s requests for assistance in publication were ignored by science editors.

So basically, Lincoln used bacteriophages (viruses that attack bacteria that today are commonly used to genetically engineer bacteria) to lyse Staphylococcus aureus. These lysates were either injected subcutaneously, applied intranasally, or administered orally or applied topically. The claim was that these lysates would somehow boost the “defensive mechanisms” of the body, particularly if “ubiquitous staph infection is a complication.” Unfortunately, the investigation of the Massachusetts Medical Society was quite thorough and concluded that there was no scientifically valid or convincing evidence presented that the phage lysates impacted the biology of cancer in any way. No wonder Null liked it.

Of course, the greatest evidence that the ACS was “suppressing” alternative “cancer cures” to Null was the existence of something that I really wish were still in existence today: The ACS list of unproven methods:

The unproven-methods list is in effect a blacklist of remedies that include some of the most promising methods for the control of cancer in the world today, among them many dietary and nutritional programs. Once a treatment gets on the list, it becomes virtually impossible for any of its proponents to continue their research. Grants dry up; doors to publications are closed. The unproven-methods list can be compared to the index of heresy in the Catholic Church in medieval times. It is a fast and efficient way of dealing with new remedies without the fuss and bother of “trials.”

Yes, indeed. Some tropes have been around forever, seemingly, and that applies to the “science is a religion” trope that is trotted out whenever professional societies try to uphold scientific standards against quackery. In fact, these days, the ACS appears not to maintain the dreaded list anymore and even has a “complementary and alternative medicine” section on its website. Maybe it’s a good idea not to segregate treatments into an entire category for “unproven” therapies and just list them in another way but say the same thing about therapies that are, in fact, unproven. I don’t know. But Null sure didn’t like it; so it couldn’t have been all bad.

Stanislaw Burzynski: The Early Years

Part II of the Null trilogy was written by Gary Null only and entitled The Suppression of Cancer Cures, lest you have any misconception where Null is coming from. Although other “brave maverick doctors” were mentioned in it, the article was primarily about Stanislaw Burzynski. In a way, I like to call this article, which is the shortest of the bunch, “Burzynski: The Early Years.” Although at the time the article was published Burzynski had isolated antineoplastons from urine, he hadn’t yet found a way to chemically synthesize them, mainly (apparently) because he hadn’t fully chemically characterized them yet. This meant that he actually was isolating them from gallons and gallons of human urine, all in order to do his experiments and, unfortunately, treat patients, which led to a hilarious analogy from Null:

Although antineoplastons are found in all normal body tissues and fluids, they are most easily extracted from urine. They appear to “normalize” cancer cells without inhibiting the growth of normal cells. Actually, urine therapy has been used as a folk remedy for cancer and other ailments for over 2,000 years. Even within the past 30 years, at least 45.000 injections of urine or urine extract were given in the United States and throughout Europe without any toxic side effects.

I’m guessing that Dr. Burzynski wasn’t too thrilled with that passage. To this day, he gets pretty irate when people refer to antineoplastons as coming from urine, being quick to correct them and tell them that he synthesizes them in a laboratory now. For an example, scroll down to question #3 in Eric Merola’s FAQ about Burzynski and Merola’s movie.

The real point of this article, however, is here:

The list of scientists who have been harassed includes names like Durovic, Ivy, Koch, Lincoln, Gerson—names that are, probably unknown to most people. But they can be compared with such innovators in science as Galileo, Pasteur, Semmelweis, and Jenner, all of whom were practically destroyed in their time by various powerful organizations, such as the Church and the medical establishment.

Today this kind of suppression is reserved not for astronomy, ecology, antisepsis, or vaccinations, but for the most steadily increasing and least understood disease of our time—cancer. The suppression of valuable treatments is the cancer blackout.

And so begins the narrative about Stanislaw Burzynski supposedly having a cure for cancer (or at least some cancers) that is being “suppressed” by mainstream oncology because…well, it’s never quite clear why: Because it interferes with profits; because it’s against the dogma of the time; because doctors and scientists apparently just can’t stand something that’s outside of the mainstream. The reasons why mainstream oncology would want to suppress these alleged cures are ever-morphing, seemingly into endless variants, depending upon the needs of the myth builder of the time spinning the yarn of a Great Man (or Woman) whose work is unappreciated by mere peons, who are either too unimaginative to understand or too threatened by the work ever to accept it. When you come right down to it, it’s not unlike Ayn Rand, and, in fact, reading this article by Null about Burzynski I couldn’t help but shake the image of Hank Rearden in Atlas Shrugged, a man who invented Rearden Metal, the best alloy in the world, and as a result had his competitors plotting against him and spreading lies about its danger. Or maybe he’s John Galt. Whatever. There is the attitude that somehow Stanislaw Burzynski is a Great Man being persecuted by fleas who fear his genius and want to mooch off of it. Null plays up this narrative.

For instance, Burzynski left Communist Poland in the late 1960s, as so many young Polish scientists did. The reason, it is implied, was because he was so much better than that, although it’s not particularly surprising that a man with few opportunities to pursue his dreams in Soviet-controlled Poland would yearn for the freedom of the West. In any case, Burzynski arrived in Houston and secured a job as a Research Associate at the Baylor College of Medicine, which is higher than a technician but not usually a faculty position. Generally, it’s the sort of position that PhDs who are either ineligible for a postdoctoral position or don’t qualify for a tenure-track position take doing research in someone else’s laboratory. He then managed to score an assistant professor position at Baylor, which is good. Clearly, he showed enough promise to compete for and obtain the position. He was even funded by the NCI from 1974 to 1977. According to this article, Burzynski got an NCI grant from 1974 to 1976 to fund his research involving gel filtration techniques to isolate peptides from urine and for testing their ability to inhibit in vitro growth of several types of cultured human cells. Ironically, as Null quotes Burzynski as saying, the NCI actually did fund Burzynski’s discovery of antineoplastons to some extent.

Unfortunately, when Burzynski applied to renew his grant in 1976, he apparently failed, although his funding continued until 1977. Not so coincidentally (to me, at least) 1977 was also the year that Burzynski left Baylor to form his own research institute. I can probably guess what happened. He failed to renew his grant; so he was probably told he would have to shut down his lab and either start seeing patients full time to support his position or find a job in someone else’s lab. Given that he had been there for five years, a common time after which medical researchers go up for tenure, he might have even failed to win tenure and been told to find another position. Whatever happened at Baylor, combine his failure to renew his grant with his being faculty in the Department of Anesthesiology, and what happened next doesn’t seem quite as conspiratorial as Null makes it sound:

Dr. Burzynski presented his startling results to the annual meeting of the Federation of the American Societies for Experimental Biology. When he met with enthusiastic responses, he knew then that it was time to begin human research.

However, soon after this Dr. Burzynski’s funding was decreased: then it was discontinued. His work was channeled into other areas of research, and his superiors discouraged his pursuit of cancer therapy. He couldn’t know at this time that this was only the beginning of his long battle with the medical establishment. Determined to continue, Dr. Burzynski struck out on his own and leased a 2,500-square-foot garage space in Houston, which he turned into an impressive private lab and office despite warnings that the medical establishment would challenge his activities.

Or, it could have been that Burzynski failed to renew his grant, and his Chair, being a Chair of a department of anesthesia and all, didn’t see the point in his continuing to do cancer research, which is more appropriately carried out in an oncology department, biochemistry department, or pharmacology department. Somehow, I doubt that there was any sort of grand conspiracy by The Man to keep Burzynski down. Whatever happened at Baylor, clearly there was some sort of a falling-out between Burzynski and the administration of the department of anesthesia, whether it was from his lack of grant funding or other conflicts. However, Burzynski used what happened to his advantage to construct the myth of the Great Man whose vision forced him to leave to pursue his scientific dream. Perhaps there was a grain of truth to that at the time he left, but over time in retrospect, now that we know what happened and how Burzynski turned out, it’s harder for an objective observer to accept that narrative. After all, why would a department of anesthesia support cancer chemotherapy research—which, let’s face it, Burzynski was doing—particularly if the investigator was losing his NIH funding? My guess, which could be wrong, is that Burzynski chewed through his startup funds between 1972 and 1974, parlaying them into an NIH grant, but was unable to keep the momentum going and renew that grant. Probably his department put up with him because he had achieved NIH funding and every department in a medical school loves an investigator with NIH funding, but was less enthusiastic about it when he lost that funding. In any case, the 1970s were a critical period in the development of the myth that is Burzynski. I’d love to know what really happened in the years leading up to 1977 that led to his leaving Baylor. All we get now are stories designed to make Burzynski look like a “brave maverick doctor” and a scientist on par with Galileo.

That myth-making and legend-building clearly had begun before Null wrote his article, the rest of which follows a script that was new back in 1979 but has become old and tiresome now. Any time anyone or any professional organization investigates Burzynski for unethical conduct, in this case administering his antineoplastons to patients even though (1) they were not approved drugs, (2) he hadn’t done any tests in animal tumor models yet, and (3) he wasn’t doing proper clinical trials, all of which were indications for an investigation, it couldn’t possibly have been because there were legitimate concerns about his activities. Oh, no. To Burzynski and his supporters like Null, it was (and still is) because the medical establishment was closing ranks to suppress a promising new cancer therapy.

Let’s compare and contrast to my situation. (Why not?) When I fail to get a grant or to renew one that I’ve had before, I view it as being because funding has tightened up (which it has), making what was good enough a few years ago no longer good enough, and/or because that time around I just didn’t do a good enough job convincing the reviewers. In other words, I view failure to be funded as being either my failing and/or due to circumstances not directed at me personally (e.g., the really crappy NIH funding situation right now). That wasn’t, however, how Burzynski thought. If he didn’t get a grant, it was obviously because the NCI was plotting against him. If his department discouraged him from pursuing antineoplaston research, it couldn’t possibly have been because Burzynski was losing his NIH funding and was not doing the sort of research that a department of anesthesia would generally take an interest in. Oh, no. It had to be because his department was trying to suppress his work as well, possibly because the government was putting pressure on it. When the AACR doesn’t accept my abstract for its annual meeting, I don’t blame the AACR; I ask myself what I could have done better and try again. Not Burzynski. If his abstract wasn’t accepted, it must have been part of a conspiracy by the “cancer establishment” to suppress his work, just as when Eric Merola recently related the story of Burzynski’s recent attempt to publish in The Lancet being rejected rapidly he not-so-subtly suggested that it must be either groupthink or a conspiracy among journal editors.

In this, Eric Merola is following a well-established script that was developed 30 years before his first movie. His “innovation” (if you can call it that) is to add The Skeptics™ as a new enemy keeping The Great Man down and trying to keep cancer patients from being cured of their cancers.

Plus ça change, plus c’est la même chose

The third installment of Gary Null’s 1979 trilogy of woo was co-written by Anne Pitrone and entitled Alternative Cancer Therapies. It was basically a tour of cancer quackery, circa 1979, combined with—you guessed it!—more conspiracy mongering about suppression of cancer cures and a lot of excuses, such as this:

Many of the clinics where we interviewed are understaffed or don’t have the funds to do important statistical analysis and follow-up of patients that would provide the general public, as well as the scientific community, with some idea of the results they’re getting. Many are so new that the statistics have limited meaning. Records of patient response are sometimes sketchy because of the nature of the treatment, which often involves the patient’s taking responsibility for a complete change of life-style as well as self-medication. Sometimes it is impossible for these clinics and doctors to get proper testing and/or cooperation with the medical community, although this has been changing dramatically as more positive research to support the alternative therapies has been discovered.

Part of the problem in analyzing statistics is that there is no single standard for measuring “positive results” in cancer. For example, when a doctor says he’s getting good results, does it mean that he’s getting objective (measurable) responses, such as tumor stabilization or regression? Or does he mean that he is getting subjective improvements, such as increased appetite, elimination of cachexia (wasting away), overall well-being, or elimination of pain? For some doctors “positive results” means simply that the patient dies in one month rather than in two weeks.

Regrettably, there is an element of vagueness in today’s alternative-therapy network not only because of the nature of the disease (cancer is not limited to one type, organ, or system) and the nature of the treatment (which is often self-administered), but also because there is a lack of long-term statistical observation. There are few doctors that have been able to keep statistically thorough records over a five- or ten-year period. Most clinics have at least some strong subjective results to report.

Null even conceded that, because of this lack of outcomes data, it would be “unwise” to “throw out conventional therapy altogether.”

More than 33 years later, nothing has changed. The same three self-excusing paragraphs could be written by Gary Null, Joe Mercola, Mike Adams, Julian Whitaker, Suzanne Somers, or any of the many apologists for and promoters of “alternative cancer cures” and published in a book or on a website today. Basically, there is no statistical evidence, because alternative cancer clinics are not about rigorous science and tracking of patient outcomes. They are about belief, standing against conventional cancer therapy, and magical thinking.

After that passage laying the groundwork for excuses as to why “alternative cancer clinics” can’t prove that what they do actually helps cancer patients or could do any better than what “conventional” cancer therapy could do at the time, Null then took Penthouse readers on a tour of cancer quackery: Gerson therapy, Linus Pauling’s high dose vitamin C, other high dose vitamin regimens, chelation therapy (yes, chelation therapy for cancer) and, of course Laetrile. The sad thing is, most of these treatments (if you can call them that) are still around and still being used by quacks, just in different combinations. For instance, I could easily find clinics for which a description like this would still apply:

“The main problem is that people wait until it’s too late, and then they want to take Laetrile and expect it to be a miracle for them,” said Dr. Robert Gibson of Ponca City, Okla. Basically using Laetrile in conjunction with a salt-free, high-fiber, and high-vegetable diet very similar to Dr. Gerson’s, Dr. Gibson also makes use of vitamins A, C, and E and enzymes. Formerly involved in a large general practice, Dr. Gibson has treated more than 2,000 cancer patients over the last three years, many of whom have “waited too long.” “For the very ill,” said Dr. Gibson, “we can relieve the pain with Laetrile and the diet and many times extend their lives beyond the expected survival; actually, the use of Laetrile is a little bit unpredictable. But if the medication does work, we’ve been getting very good responses with many different tumors. And with those patients that are in better shape than ‘terminal’ over the past three years, I’d say we’ve been getting about sixty-eight percent positive results.” Dr. Gibson points out that this is not really an adequate statistic, since most data on recovery require a “five-year survival time.”

Ah, yes. The old “If only the patient hadn’t waited too long to come to me” gambit.

Just for the heck of it, I tried to see how many of the clinics mentioned by Null 33 years ago are still around. As you might expect, many of these 1970s-era promoters of “alternative cancer cures,” like Dr. Dean Burk, have since died. (One notes that Dr. Burk was also an anti-fluoridation crackpot who was known for saying that “fluoridation is a form of public mass murder.”) Dr. Ray Evers, a promoter of chelation therapy for everything, including cancer, apparently died in 1990, and his fellow quacks paid tribute to him in 1991. Dr. R. Glen Green was apparently inducted into the Orthomolecular Medicine Hall of Fame in 2007 at age 84 but died in 2010. Nor is the Livingston Clinic still in operation, its not having been able to survive too many years after the death of its founder. In 2004, Dr. Jack Slingluff pled guilty to one count of introducing an unapproved new drug (Laetrile) into interstate commerce. The State Medical Board of Ohio suspended his medical license for a year and permanently revoked it in 2008, and he died in 2011. Similarly Dr. Emmanuel Revici died in the 1990s, but his clinic still exists and is still seeing patients.

In some cases, it’s not always clear whether the clinic is still in operation. For instance, it isn’t clear whether the Gibson Clinic still exists in Ponca City, OK; if it does it doesn’t have a web presence, although it’s listed in Whale.to. It does, however, turn out that one of these “brave maverick doctors” featured by Null is apparently still practicing. I’m referring to Dr. Michael Schachter, who runs the Schacter Center for Complementary Medicine, where he treats cancer using a combination of chelation therapy, various nutritional interventions, detoxification, intravenous H₂O₂ and/or vitamin C, and other woo. His center’s website even includes a Quack Miranda warning right here.

Oh, and Stanislaw Burzynski, as we all know, is still practicing.

Sadly, however, even though the unavoidable ravages of time have taken their toll on the “brave maverick doctors” profiled in Null’s article, each and every dubious and unproven therapy espoused by them is still being practiced today by someone somewhere. No matter how often the stake of science is driven into their heart (or, if you prefer The Walking Dead, the arrow or katana of science is driven into their brains), they always rise again. What taking this little step back into a time when I was still in high school has shown me is that, as the French say, plus ça change, plus c’est la même chose, or, as I like to say, there is nothing new under the sun, at least when it comes to “alternative cancer cures.” It’s kind of depressing to think that, not only has nothing really changed much in the last 33 years, but that, if anything, elements of what was once called quackery are more accepted than they were when Gary Null first published his trilogy of woo in Penthouse.

So it was that when I wrote about Fabio Lanzoni teaming up with Eric Merola to promote Stanislaw Burzynski, multiple people asked me about a new patient, one who appeared for the first time in a Burzynski advertisement—excuse me, Q&A by Eric Merola. This is a patient who of late has been very active on Twitter both attacking Burzynski critics and singing the praises of Stanislaw Burzynski, all the while touting how Burzynski cured her stage IV triple negative breast cancer. She has also recently become one of the main users of the @BurzynskiSaves Twitter account, which formerly was run by someone whom many Burzynski critics suspected to be an employee of the Burzynski Clinic but was recently apparently handed off to a cadre of Burzynski patients, as revealed in Merola’s last video. Clearly, she is a new recruit to the patients whose testimonials Burzynski and Merola use to promote the Burzynski Clinic. Her story, that Burzynski saved her from stage IV triple negative breast cancer, seems very compelling at first glance. But is it?

It is with a bit of trepidation that I tackle this case, because, no matter how careful, respectful, and nuanced I am, I can reasonably expect that I will be accused of “attacking” this patient. It is even possible that someone will call my university again to complain about me. Of course, I’m doing nothing of the sort and have no doubt that this patient genuinely believes that Burzynski saved her. My analysis of her anecdote, however, leads me to believe that she is probably not correct in attributing her survival to Burzynski. I also know that to a patient who is not an expert in cancer, a story like hers can seem all the world as though Burzynski really did save her and realize that I’m not going to change this patient’s mind, no matter what I say. I do, however, want to critically examine her story, as told on various pro-Burzynski websites, because her story is being touted by Burzynski and Merola as yet another “success story” that proves that Burzynski can cure cancers that others can’t.

The patient, Sheila Herron, touts her experience as a nurse for over 30 years and is a passionate defender of Burzynski, so much so that she sometimes gets a bit—shall we say?—carried away, invoking stormtrooper analogies and calling Burzynski critics “fascists,” then trying to make nice with them not long after. She was diagnosed with triple negative breast cancer three years ago, and that happens to be my area of specialty. Triple negative breast cancer is an aggressive subtype of breast cancer that lacks hormone receptors or the HER2 receptor. Stage for stage, it tends to have a worse prognosis, with a higher recurrence rate and lower survival rate. Worse, contrary to hormone receptor positive breast cancer, which can be treated with Tamoxifen or aromatase inhibitors (drugs that block the action of estrogen) or HER2-positive tumors, which can be treated like Herceptin, triple negative breast cancer has no molecular targets for therapy that have been identified and validated yet. As a result cytotoxic chemotherapy is the only systemic treatment. It turns out that triple negative breast cancer is often very sensitive to chemotherapy—more so than estrogen receptor-positive cancers, by and large; the problem is that it rapidly develops resistance.

So what’s Ms. Herron’s story? The official version is recounted at—where else?—the Burzynski Patient Group’s website. There’s also a version of her story on Cancer Compass, which touts itself as a website that advocates the use of alternative cancer therapies. (No kidding.) On the Burzynski Patient Group website, the story is told thusly:

In Nov. 2009 I developed pneumonia and had a chest x-ray which showed a mass on the left upper lobe of my lung. This proved to be cancer. The PET scan leading up to the lung surgery, showed masses in my breasts. I had a left upper lobectomy in Nov. 2009, and bilateral mastectomies with reconstruction in Feb. 2010. I chose to take the holistic route, as I have seen the ravages that traditional chemotherapy inflict on the human body in the patients I have cared for. I will attach the link to the “Cancer Note” I wrote on Facebook which describes the steps I took to build up my immune system. (Let me know if the link doesn’t work, and I will cut and paste it to you. A few weeks ago I had a local recurrence of my breast cancer and had surgery to remove it. This led me to call the Burzynski Clinic

It’s not entirely clear from the account above (at least not to me) whether Ms. Herron had an early stage lung cancer successfully treated surgically and then was soon after diagnosed with breast cancer (in other words, had two independent primary tumors, each successfully treated with surgery) or whether her lung cancer was actually a metastasis from her breast cancer that was resected, followed by her diagnosis with breast cancer and successful surgical treatment (i.e., stage 4 disease). Her Cancer Compass account doesn’t help in this regard, as it concentrates only on her treatment with Burzynski (and, as we will see, a whole lot of other woo), and her initial treatment was before she found her way to the Burzynski Clinic, although she does say she has “thanked my cancers (lung and breast) for all they have taught me, and have told them they can leave now,” which sounds as though she had a lung cancer and a breast cancer. A little deeper digging was required.

It turns out that there is more information on this part of Ms. Herron’s treatment odyssey on Facebook, contemporaneously dated April 2010. In a comment, she writes:

My cancers were discovered in Nov. 2009.

By MIRACULOUS good luck I got the flu (probably H1N1). I got pneumonia, went to urgent care and they did a chest x-ray, which showed a mass on my left upper lobe. I had a CT the next day, a thoracic surgeon consult 3 days after that, then a CT guided biopsy, a PET scan and a pulmonary function study done in the 3 days after that, and the next week had a mediastinoscopy/bronchoscopy and video assisted left upper lobectomy (12 days after the first x-ray- an example of the allegedly “terrible” healthcare system we have. In Canada I might just now be seeing the thoracic surgeon or having the PET scan. I am SOOOOO grateful to live here!!!). The PET scan I had (where they inject radioactive sugar and do a CT looking for metastastis) showed no lung metastasis, but a weird area on my left breast. After I recovered from the lung surgery, I had a mammogram, and an ultrasound guided biopsy (it turned out to be another, seperate cancer from the lung). I then had an MRI and underwent bilateral mastectomies with reconstruction in Feb…

My final reconstruction surgery will be May 4th- the new and improved me, breast cancer free.

What a miracle that flu was!!!!! I would have been walking around oblivious to both cancers if I hadn’t needed that initial chest x-ray for the flu. My breast cancer turned out to be in both breasts as well. Amazing!! It never showed up on mammograms, (35% of breast tumors don’t- surprise to me!)

I am taking the naturopathic route vs/ chemo/radiation and am doing great. There is SOOOOOO much we can do to help our incredible immune systems heal our bodies and/ OR (preferably) STAY healthy!! I was certainly not paying attention, or taking care of my body before this happened.

I AM now.

In a comment made on the Burzynski Scam blog, Herron writes (you’ll need to scroll down a bit):

I was diagnosed with Adenocarcinoma of the left upper lobe of my lung in Nov. 2009, and had a lobectomy. The pre-op PET scan found my breast cancer, which turned out to be Stage III triple negative invasive ductal carcinoma. I went the naturopathic route vs/ chemo and radiation, because as an RN for 34 years, I have seen the ravages the traditional route can cause.

This clarifies things. Up to this point, these accounts are most consistent with two separate primaries, one an adenocarcinoma of the lung, which was resected thoracoscopically, and a second cancer in the left breast, arising from the breast. Consequently, up until this point, what we most likely have is a woman who was unfortunate enough to have two different cancers in two different organs, but fortunate enough that both of them were sufficiently early stage that they could be successfully resected surgically. Like so many testimonials I’ve discussed before, she refused chemotherapy and radiation in favor of lots and lots of woo, including naturopathy, massive changes in diet, green tea, juicing, Resveratol, reiki, “detox,” and acupuncture. (And that’s not all.) As is so frequently the case, by refusing adjuvant chemotherapy and radiation, which are the “icing on the cake” for surgery in breast cancer that decrease the chance of recurrence, she decreased her chance of survival. I did a bit of prognosticating using Adjuvant! Online, which allows me to estimate 10 year survival rates for cancers with various characteristics. If Ms. Herron had a stage III cancer, that means it was either rather large (greater than 5 cm), had a lot of positive lymph nodes, or both. According to Adjuvant! Online estimation, a patient with a stage III triple negative cancer treated with surgery alone has, depending on the specific features of the tumor, between a 24% and 57% chance of being alive in 10 years. (I ran the estimate using the worse features I could think of consistent with a stage III triple negative cancer, ran it again with the most favorable features I could think of, using an estimate of Ms. Herron’s age to be around 58 based on her time in nursing.) Sure, those odds aren’t fantastic, and I doubt she’s at the 57% end of the scale, but even though Ms. Herron’s odds were most likely less than 50-50 without adjuvant chemotherapy, they weren’t so horrible that it would be considered highly unusual or rare for her to have survived.

So why did she go to the Burzynski Clinic? She tells the tale in multiple places. First, here’s a continuation of the account on the Burzynski Scam blog:

I developed a small localized recurrence in Aug. 2011. After surgery, I went to the Burzynski Clinic in Sept. 2011. They ordered a PET scan which discovered my T-2 spinal metastasis. I started on his treatment and was followed up by an oncologist near me who works with Dr, Burzynski for my monthly labs and an injection. Twelve weeks, almost to the day of starting his treatment, my cancer was gone, as verified by my follow up PET scan Dec. 22, 2011. The radiologist had the before and after films up and showed me that it was all gone and that “there is no active cancer anywhere”. This treatment had no side effects, I did not lose my hair, and my monthly labs remained normal. How many other cancer treatments out there can say this? NONE!!!

And on the Burzynski Patient Group website:

I was encouraged to stay a few more days. A whirlwind of actions occurred the next 2 1/2 days. I had thorough blood and urine work-ups, as well as an echo-cardiogram and a PET scan, which was miraculous, for the PET scan showed a metastasis to T-2 on my spine. I was started on his medication on the first day and then low dose chemo for my metastasis and an injectable to keep my bone strong and prevent further metastasis. It is a miracle!! I would not have known about this situation until it had spread further, or until, possibly, my spine had a pathological fracture, which, that high up, could have caused quadriplegic, so I can, and I DO, say that Dr. B and his team have already saved my life by finding this tumor and getting me on their gene targeted regimen to remove it.

So about a year and a half after Ms. Herron’s radical surgery rendered her disease-free, she developed a local recurrence. This is unfortunate. We also don’t know for sure whether she underwent radiation therapy, although the story sounds very much as though she did not. Radiation therapy is indicated after surgery for a stage III breast cancer, because that can greatly decrease the risk of a local recurrence, even after a mastectomy. In any case, this recurrence must have been small, localized, and amenable to resection with a wide margin. In this, Ms. Herron was again fortunate, because all too frequently chest wall recurrences like hers presage metastatic disease, and all too often they tend to be too extensive to be amenable to a simple surgical excision.

But, wait, you say. Wasn’t the spine lesion on PET metastatic disease? The answer to that question is: Maybe. We don’t know. Why do I say that? The reason is simple. As far as I can tell, there was never a tissue diagnosis to prove that that T2 lesion was in fact metastatic disease to the spine. Most oncologists will not treat a breast cancer patient for metastatic disease without first doing everything within reason to obtain a biopsy and thus proof that the lesion is a metastasis. Just as important, tissue allows the oncologist to look at markers; sometimes estrogen receptor-positive tumors turn negative as they metastasize or sometimes the HER2 status changes. Such information is very useful for planning therapy, rather than just basing additional therapy on the original surgical specimen. I’ve looked around, and nowhere have I been able to find an account of Ms. Herron’s treatment in which Burzynski got a biopsy of the spinal lesion before initiating treatment. PET scans can be misleading; they can have a not insignificant false positive rate. Actually, in fact, depending upon the clinical situation, they can have a high false positive rate. There are lesions on PET that can mimic metastasis. For instance, fibrous dysplasia of the bone can mimic skeletal metastases, as can osteonecrosis, inflammatory lesions, and others. Quite frequently, these lesions disappear when a patient is rescanned a few months later.

True, there are exceptions to the “tissue rule,” such as if it’s unsafe to biopsy due to location or patient comorbid conditions or if the lesion is so characteristic on an MRI or CT of the involved vertebrae that there is no doubt. (One notes that no mention of imaging of the spine is made other than the PET scan.) Even accepting those exceptions, a tissue diagnosis would still be essential, especially in this case, before starting treatment of bone metastases. Remember, this is a patient who apparently had two different cancers diagnosed three and a half years ago. Although less likely than breast, the spine metastasis, if it was real, could have been lung cancer. However, despite every indication for obtaining a tissue diagnosis, as far as I can tell Burzynski apparently never got a biopsy of the lesion detected on PET scan before beginning treatment in order to confirm metastatic disease and identify tissue type. In retrospect, given the clinical behavior of this “metastasis,” most likely what happened is that Burzynski treated a false positive PET lesion, and it did what nearly all false positive PET lesions do: It disappeared within a few months.

Alternatively, it is possible that this lesion was a metastasis and that the chemotherapy that Burzynski administered shrank the tumor to microscopic disease, but, most likely, did not eliminate it entirely. Personally, I’d prefer the first possibility over the second. No, the reason is not because it would mean that Burzynski’s “personalized gene-targeted cancer therapy” doesn’t work, but because the first possibility would imply a good chance of long term survival for Ms. Herron. The second possibility would be much less favorable for her; it would mean that, sooner or later, her cancer will likely recur. I do not want that to be the case. Regardless of my wishes and whatever the case really is, without a report of a tissue diagnosis, it’s impossible to distinguish between the two possibilities. The point, of course, is that Ms. Herron’s case, like virtually every other Burzynski patient case I’ve analyzed, is not convincing evidence for an antitumor effect due to Burzynski’s treatment, although it is also possible that her story could mean an antitumor effect due to Burzynski’s “everything but the kitchen sink” approach to combining chemotherapy and targeted therapies. As is always the case whenever Burzynski mixes and matches chemotherapy and targeted therapies, he might have gotten lucky, and Ms. Herron’s tumor was responsive to the cocktail. Without a lot more information, we just can’t tell which possibility is most likely. We can tell, however, that it’s unlikely that Burzynski is the cause of Ms. Herron’s good fortune.

Finally, Ms. Herron is not undergoing antineoplaston therapy, but rather Burzynski’s “gene-targeted therapy.” This led me to wonder: On what basis is he “targeting” his therapy? As I’ve recounted before, Burzynski usually sends off blood and tissue samples to Caris for testing. The Caris Target Now™ test, which since my discussion of Burzynski’s “personalized therapy” appears to have been renamed Caris Molecular Intelligence and is now available at more levels of service (although its reports look much the same to me), is nothing unique to the Burzynski Clinic. Anyone who is willing to pay for it can have it, and the report will be the same. Given that Burzynski appears not to have gotten tissue before treating Ms. Herron, what did he send to Caris for testing? Maybe he sent blocks from her original tumor. Who knows? In any event, there is as yet no convincing evidence that the Caris tests (or any of the other competing tests) result in better outcomes.

I’d like to conclude by saying that I wish Ms. Herron well. Really, I do, despite her intemperate behavior on Twitter. That’s actually why I hope that Burzynski really did treat a false positive PET lesion, because that explanation for her good fortune would be most consistent with its continuing indefinitely, in contrast to an actual treatment effect, which would imply eventual relapse. When it comes to Burzynski, on the other hand, I’m not nearly so benevolent. In my ever-Insolent opinion, he and his propagandist Eric Merola are cynically using patients like Ms. Herron as human shields to deflect criticism. I can put up with a lot from cancer patients, even Burzynski cancer patients, and never respond in kind. Burzynski’s activities I cannot countenance.

The database released on Wednesday by the federal Centers for Medicare and Medicaid Services lays out for the first time and in voluminous detail how much the vast majority of American hospitals charge for the 100 most common inpatient procedures billed to Medicare. The database — which covers claims filed within fiscal year 2011 — spans 163,065 individual charges recorded at 3,337 hospitals located in 306 metropolitan areas.
…
Within the nation’s largest metropolitan area, the New York City area, a joint replacement runs anywhere between $15,000 and $155,000. At two hospitals in the Los Angeles area, the cost of the same treatment for pneumonia varies by $100,000, according to the database.

We discussed this issue before when it was brought to the public’s attention by Brill’s “Bitter Pill” piece in Time. Hospitals have a wildly-irrational billing scheme that represents a war they are in with payers. However, Brill was wrong to attribute excess costs of US healthcare to the charge master problem, while the HuffPo piece gets this issue right. It’s not a problem for insurance companies, or government, since they don’t pay these bills. It only screws payers without negotiating power or knowledge of how to navigate these bills – the uninsured:

“The charge masters are totally irrational,” Robert Laszewski, a former health insurance company executive who consults for health care companies as president of Alexandria, Va.-based Health Policy and Strategy Associates, wrote in an email to The Huffington Post.

Hospitals used to base prices on health care costs and on the need for profit that would, among other things, enable them to make investments in their facilities, Laszewski explained. “They became the baseline from which the hospitals started,” he wrote. But over time, hospitals raised charges in anticipation of negotiating discounts with private health insurance companies while maintaining their revenue streams, he said.

Prices have continued growing over decades to the point where there is no plausible justification for them, according to Laszewski: “Over the years, the charge masters have become more and more disconnected from reality.”

And since they haven’t been public or shared before now, I suspect each hospital probably has some set of services that appear to be priced excessively compared to their near neighbor. The costs haven’t grown so much from a response to the treatments they provide, so much as the perceived ability to force insurers to pay a larger portion. Each hospital has probably independently evolved a strategy to do this, hence the wide variability in pricing.

The charges are the prices hospitals establish themselves for the services they provide. Although Medicare and Medicaid don’t base their payment rates on these figures, private health insurance companies typically do, which means they usually pay more for the same health care than the government does. That translates into higher premiums for people with insurance. And uninsured people are expected to pay the full list price or a discount from that number, which tends to mean they pay more than anyone else.

When a hospital doesn’t get paid as much as it wants from one source, it tries to make up the difference in other ways, such as billing so-called self-pay patients — almost always the uninsured — for the full list price of a service, said Robert Huckman, a health care expert at Harvard Business School. Even when hospitals agree to huge discounts for patients who can’t pay the bill, those discounts are taken from inflated prices much higher than those the government or private insurance companies pay, he said.

“The charge master is complete nonsense that really doesn’t matter — unless you are an uninsured person and you’re getting these huge bills driving you toward bankruptcy,” Laszewski wrote. “The biggest irony of the U.S. health care system is that only the uninsured — often people who don’t have a lot of money — are the only ones the hospital expects to pay these incredibly inflated list prices!”

Hospitals also inflate charges to raise money for things that aren’t related to treatments, said former Sen. David Durenberger (R-Minn.), who is senior health policy fellow at the University of St. Thomas in Minneapolis.

“The biggest factor by far, in my experience, is what are you trying to cross-subsidize,” he said. Hospitals will increase charges to finance things like technology upgrades and education and research and to compensate for their operational efficiencies, Durenberger said.

We’ve discussed extensively the sources of excess costs in US healthcare. It’s not the chargemaster. It’s excessive administrative costs of private health insurance, excessive drug costs (everything from direct-to-consumer advertising, the fact US citizens are charged more and GWB made it so medicare can’t negotiate for lower drug prices), inefficient delivery (primary care in the ER), redundant delivery, lack of a government-implemented or regulated standardized electronic medical record (EMRs from private companies actually increase costs), defensive medicine, excessive end-of-life care, and excessive reimbursements of procedures and diagnostic testing.

What will this data release mean for health care costs? Probably not much as the hospitals will now just normalize excessive bills to each other, rather than just having their own individually-irrational billing scheme. The charge master is unjust, but it’s not why we pay more for healthcare overall.

There is a solution to the charge master problem though, and it was found in New Jersey. Force hospitals to charge the uninsured what they charge Medicare. It’s that simple. It’s that easy.

None of that stops Burzynski, and his propagandist, Eric Merola, from claiming that Burzynski is a “pioneer” in the field who is only now being emulated by the big cancer centers like M.D. Anderson and Memorial Sloan-Kettering. Such risible hyperbole would induce fits of laughter in me if it weren’t such a complete lie. I’ve searched Burzynski’s publications, and there’s no evidence that he was doing anything resembling targeted therapy 20 years ago, but to hear him tell it, you’d think he invented the concept of oncogenes and targeted agents based on genomic analyses of tumors. Truly, Burzynski’s arrogance of ignorance is astounding.

One thing, however, I’ve tried very hard not to do when discussing Stanislaw Burzynski and his propagandist Eric Merola is not to attack his patients or their families, even though Merola cynically exploits patient stories to present Burzynski as some sort of genius in cancer therapy. The reason, of course, is that I’m a cancer surgeon and hence feel honor-bound not to do so. I do cancer research and take care of cancer patients for a living; I could never (intentionally) do anything to harm one or attack one. Another reason is that I realize that the patients whose stories are being exploited by Eric Merola and Stanislaw Burzynski genuinely believe that Stanislaw Burzynski is the man who saved their lives or the lives of their loved ones. Moreover they genuinely believe that Burzynski is the only person who could have saved them. It is honestly how they see skeptics: As evil people trying to keep the Great Man from doing his work and saving lives. Why? Does it matter? Either we’re in the pay of big pharma, we can’t stand having our paradigms “challenged” by Burzynski, or we just plain enjoy watching cancer patients die. At least, the first two are dominant reasons frequently cited, and the last one is only a slight exaggeration, if exaggeration it even is at all. I also note that this refusal to “fight fire with fire,” as I sometimes do with quacks, pseudoscientists, and cranks, has in essence tied one arm behind my back and left me at a huge disadvantage, as certain Burzynski patients can say anything they want about me (one on Twitter has called other skeptics and me “fascists” and “stormtroopers”), and they know I just have to take it.

However, I do not have to take their misinformation and let it go unanswered. That, I do answer, but not in a way that attacks patients. For example, on April 27, there was a screening of Eric Merola’s latest hagiography of a “documentary” about Burzynski, Burzynski II:Electric Boogaloo, or whatever he calls it, at the Newport Beach Film Festival, followed by a Q&A, as Merola had done in Toronto and San Luis Obispo before. As was the case before, Merola and a bunch of Burzynski patients fielded questions from the audience and in general attacked what Merola called The Skeptics™, an apparently shadowy, evil cabal of pharma drones who, if Merola and Burzynski’s patients are to be believed, delight in crushing the hope of patients and cackle as they try to prevent them from reaching the only man in all the world who can save their lives, Stanislaw Burzynski. As was not the case before, there was a special “surprise” celebrity guest, a man represented as a former spokesperson for the American Cancer Society.

I’m referring to bodice-ripper model and sometime actor, Fabio Lanzoni. We saw a preview last week, and the misinformation was bad enough. This week, we get the full serving, and, between Fabio, Merola, and the rest of the panel the misinformation was staggering in its sheer mass, a black hole of pure nonsense from whose event horizon no rationality could escape, just as light cannot escape a black hole. Check it out, but be forewarned. It will require a strong stomach:

But, wait, Orac, you say. Fabio is is the family member of a cancer patient. His sister has ovarian cancer and clearly was reaching the end of the road. Aren’t you attacking Fabio? Not at all. Parts of the video are actually moving. Fabio clearly loves his sister, who developed ovarian cancer three and a half years ago. Clearly, he would go to great lengths to save her—and already has, having brought her to the Burzynski Clinic. Yet, whatever sympathy I might feel for Fabio and his pain right now, the fact remains that his understanding of science is…substandard, bizarre, even. And that’s putting it mildly. It would be one thing if he kept his misinformed beliefs about cancer to himself, but he doesn’t. He has gone from being a spokesperson for evidence-based cancer care (the American Cancer Society) to actively promoting a man whose treatment is unproven, whose clinic and research institute play fast and loose with human subjects protections, and who charges patients exorbitant sums of money to be on clinical trials.

For instance, Fabio repeats his line from the preview about radiation causing cancer, which I discussed before, even repeating his particularly despicable line, “Just ask the Japanese about radiation and cancer if you don’t believe me.” He repeats his line about there only being “chemo, radiation, and surgery,” and adds to it his recounting of his telling his sister never to undergo radiation. He even uses the outright false fear mongering claim that “chemotherapy kills far more people than cancer” and that it will “kill you faster than cancer.” One trope that Fabio enlists is the claim that chemotherapy is a “70 year old technology,” in which he’s clearly trying to frame it as being as obsolete as a 70 year old computer or a 70 year old car (the latter of which he explicitly used as an example). The further implication is that Burzynski is the future, the latest technology. He’s the iPhone 5 or the Galaxy S4 compared to chemotherapy being one of the brick-like phones from the 1990s. I must admit, this is a new one on me, but the answer, however, to the question of why we continue to use a 70 year old technology is easy: We use it because it still works when used properly. After all, would Fabio question the use of aspirin, which is way more than 70 years old? Would he question the use of appendectomy to treat appendicitis, an operation that dates back to the 1700s and is still the standard of care? Until you invent something better, you use what works.

Fabio, sadly, is too blinded by false hope to see through Burzynski’s B.S. and realize that he has not invented anything better than chemotherapy, his claims otherwise notwithstanding. In fact, Burzynski’s just invented another one, because antineoplastons are chemotherapy. No, worse than that. He’s just happened to appropriate one. The key antineoplastons have been intermittently studied for their efficacy against cancer since the 1950s. That’s right. Burzynski’s antineoplastons are at least 55 year-old “technologies”! Moreover, the chemotherapies he uses in his cocktails of “personalized, gene-targeted cancer therapies” are also “70 year old technology.”

Featuring prominently is a horror story about Fabio’s sister, who was diagnosed with ovarian cancer. Briefly, she apparently had an ovarian cyst that was not identified preoperatively as cancer and underwent surgery to remove her ovaries and uterus. A while later, she developed a recurrence, leading to surgery to resect a “three foot piece of bowel.” Clearly, she had developed a bowel obstruction. At one point, Fabio recounts a story where his sister had started a special diet at his urging. Around the same time she underwent chemotherapy. Fabio contemptuously tells how a doctor told his sister that diet didn’t matter and that she should eat whatever she likes. When her tumor markers plummeted, a doctor told her that the “chemo’s working.” Fabio, of course, attributed the decline to the special diet. Then, when his sister started eating whatever she wanted and recurred, Fabio blamed it on that. Yes, Fabio confuses correlation and causation. He also goes on and on about how she got chemotherapy that is for “sarcoma.” I tried to figure out what he was talking about. (I’m not a gynecologic oncologist.) Now, cisplatin-based treatments are the standard of care for first line treatment of ovarian cancer, but there are drugs used for salvage therapy. One of them is ifosfamide, which is also used for sarcoma. So is gemcitabine sometimes (geez, that’s chemotherapy for pancreatic cancer).

One can’t help but mention that Burzynski himself uses chemotherapies all the time designed for other tumor types against brain cancer and other cancers for which they are not approved. He calls it “personalized, gene-targeted cancer therapy.”

Although Fabio dominated the Q&A, a lot of the usual suspects were there again, as before. There was Tori Moreno, who hardly said anything during the entire Q&A, although her father said many of the same sorts of things that he said last time, and multiple panelists pointed to her as proof that Burzynski cures cancer. So were the Siegels, Steve and Mary Jo (although Mary Jo didn’t say much of anything—in fact she said even less than she said last time). Predictably, Steve Siegel went through his now familiar routine of claiming that Burzynski has published two to three papers a year for many years. Maybe he has, but if he has they’re not in PubMed, at least not that many since 2006, and a lot of them are in crappy, bottom-feeding journals or, even worse, in alternative medicine journals. Nor, as I have pointed out time and time again, has Burzynski published complete results of any of his phase 2 clinical trials (of which there are over 60). In any case, as I’ve explained before in detail, it is not at all clear that Burzynski saved the lives of Mary Jo Siegel or Tori Moreno.

Then there was Sgt. Ric Schiff, whom we first met a year and a half ago in the first Burzynski movie, a police officer whose daughter was treated by Burzynski but died. One can’t help but feel sorrow for his loss, as no one should have to see the death of a child. However, in the years since his daughter died in the 1990s, Schiff has become a regular promoter of Burzynski and his clinic, because, although his daughter did not survive and, in all fairness, almost certainly no one could have saved her, he doesn’t blame her death on Burzynski. He blames it on chemotherapy and radiation. and repeatedly tells audiences how, as a cop, he can spot fraud a mile away, but finds no fraud in Burzynski. It’s a bizarre appeal to his authority as a police officer, and an irrelevant one. His skill at spotting run-of-the-mill frauds does not magically give him the ability to judge whether a medical intervention is safe and efficacious or not or to weigh the science on cancer chemotherapy. The other thing Sgt. Schiff likes to do is to insinuate that skeptics are afraid to engage with him by claiming that every time he sees his name mentioned in a skeptical post about Burzynski he e-mails the skeptic and then bragging that none of them have ever responded to him. Interestingly, I asked around among skeptics who blog about Burzynski and, to a person, they all said that Schiff had never e-mailed them. Maybe he’ll contact me. My e-mail address for this blog is orac@scienceblogs.com, and if he wants to e-mail me under my real name I’m sure he can easily find it.

Then there was Lt. Col. James Treadwell (ret.), who, it is claimed, was cured of glioblastoma multiforme by Burzynski. Oddly enough, he said very little (or what he did say was edited out); so I won’t discuss him. At some point I might have to examine his case, because it’s one I haven’t looked at in detail before and he pops up from time to time promoting Burzynski.

Last of all, there was another newcomer besides Fabio Lanzoni, a patient named Sheila Herron. She is a woman who attributes her survival from metastatic triple negative breast cancer to Burzynski and recently has taken up engaging skeptics on Twitter. Unfortunately, she also has a penchant for insulting them and even pulling a Godwin gambit. Indeed, on one occasion, she even called skeptics (myself included) “stormtroopers” and “fascists,” all the while equating criticism of Burzynski with attacking patients. None of this is surprising. As I’ve said before, it’s really how a lot of Burzynski patients see us. It’s also, as I’ve noted before, how antivaccinationists see us as well. In any case, I don’t find her story as much of a slam-dunk piece of evidence that Burzynski can cure triple negative breast cancer, but that might be fodder for another post. Suffice to say, I think that surgery probably cured her, but that’s all I’ll say for now.

Finally, running throughout the entire panel was an intense hatred for skeptics. The hostility in the room must have been palpable for one skeptic, Bruce Gleason, who entered the lions’ den. Unfortunately, he screwed up. Big time. He got up (see around 16:10) and said how he had been convinced and that he would now recommend Merola’s film to the 1,000 members of his Orange County skeptic organization. He also tried to distance himself from “those” skeptics apparently portrayed in the film. It was, I hate to say, a rather nauseating performance. Fortunately for Gleason and greatly to his credit, he soon realized his error and three days later wrote a post admitting his mistake, thus mostly redeeming himself. As soon as a couple of skeptics calmly explained things to Gleason, he realized his error, something I suspect that Merola will never do. Merola, not surprisingly, was completely intellectually dishonest and never mentioned this “recantation” of his “conversion” in the video. Instead, he left Gleason’s appearance in the video uncommented upon.

The last 15 minutes of the film had a lot more hostility towards skeptics, beginning with Fabio saying this:

You know, if you are still skeptical, in my book you are ignorant, because, I’m telling you, what’s count is action.

Why? Well, in what is perhaps the most amusing exaggeration, a talking point no doubt fed straight from Stanislaw Burzynski to Eric Merola to Fabio Lanzoni, Fabio declares that Burzynski submitted “two and a half million pages” of clinical trials to the FDA and demands, “What more do they want of him?” Well, some real science indicating that antineoplastons have significant anti-tumor activity against the cancers tested, as well as full reports of the results of actual clinical trials showing outcomes data would be nice.

Later, Fabio lambastes skeptics some more:

If the FDA couldn’t find this much on this guy, you think just a regular skeptic’s going to find something? And plus, all the skeptics out there. Who they are? Probably people —I tell you, it doesn’t take a genius to figure out—or they’re people being paid by the pharmaceutical industry. Or they are people with no life. So my advice to them: Get a life. You know. Get a life. Dr. Burzynski is busy saving lives. Don’t. Waste. Any. More. Of. His. Time.

Yes, he really said that and really did emphasize the last sentence. Go to 38:20 if you don’t believe me and see it for yourself. Seeing Fabio’s demeanor and hearing his intonations will make you appreciate that what he said was far more insulting and offensive than mere words typed on a blog can adequately convey. So, in one brief paragraph, we have Fabio using the pharma shill gambit, a blatant use of the logical fallacy known as poisoning the well, along with just plain insults, in which he portrays skeptics not-so-subtly as basement dwelling young adults who aren’t married, don’t have any children, and are basically, unlike the apparent magnificence that is Fabio, geeks, nerds, dorks, pointy-headed science types. In brief, Fabio played a stereotypical jock dismissing intellectuals as losers who don’t understand the real world. Well, guess what? Even if all of that were true, it wouldn’t invalidate the arguments against Burzynski. I suppose I should be grateful to some extent, though, that Fabio restrained himself from likening Burzynski patients and families to rape victims being told they have to rally for stronger laws against rape, an analogy that Steve Siegel used (at around 45:45). Oh, sure, he apologizes for the poor analogy, but then he goes and uses the rape analogy analogy anyway. That analogy isn’t just a poor analogy; it’s highly offensive. A few minutes later (48:45), Siegel says:

We have been under such pressure from the skeptics, and patients are literally losing time, not going to see Burzynski, wasting time. Children are not getting to see him. You can join us on Twitter @BurzynskiSaves, where a number of us are speaking back to the skeptics, because there’s a lot of negativity up there.

That’s right. According to Steve Siegel, skeptics are killing cancer patients and babies! So, I guess that means we must be a double evil: Wasting The Great Man’s time and forcing him to swat at fleas and at the same time killing patients. Yes, this is the message that Merola is promoting through these Burzynski patients. It’s utterly despicable, of course, a tactic compared (quite appropriately, I think) to using cancer patients as human shields against criticism. As for the @BurzynskiSaves Twitter handle, that appears to be a “Hail Mary” pass to draw attention away from skeptic suspicions, based on some rather intemperate and ill-considered Tweets, that @BurzynskiSaves was in the past run by a rather high-placed employee of the Burzynski Clinic.

The Q&A ends with a lot of grandiose fantasies: That the movement is going to be so huge that it will be on the scale of what Gandhi and Martin Luther King achieved; that it will be bigger than the civil rights movement of the 1960s, the HIV/AIDS cure movement of the 1980s, and the like. Meanwhile, standing against this brave maverick doctor is the FDA, which is compared unfavorably with the mafia. Again, I suppose I should be grateful that Merola and crew didn’t explicitly pull a Godwin, but the implication was definitely there when he talked about the FDA showing up at the Burzynski Clinic in January for its most recent inspection. As I said, all grandiose, and not particularly rooted in reality. Ric Schiff tells a tale of a parent being told by Nancy Pelosi’s office that Burzynski was a charlatan. He claimed to have intervened and persuaded Nancy Pelosi about how great Burzynski supposedly is to the point that, according to Schiff, Pelosi is now asking how she can help. Whether the story is as advertised or not, I don’t know. It could be like Merola’s telling a story about David Axelrod having seen his first movie and speculated that it could destroy the pharmaceutical industry (one notes that he either didn’t tell this story again in this Q&A or edited it out), or it could be true. Maybe a letter or call to Nancy Pelosi’s office would tell us what her position on Stanislaw Burzynski is now, particularly if it came from a constituent.

All of this tells us skeptics: Our job is not done. As was discussed in the first Q&A session, Burzynski followers plan on trying to make their influence known at the federal level to try to “rein in” the FDA and get antineoplastons approved by fast track. It’s an effort that will probably fail, largely because Burzynski’s followers are relatively few and made up of mostly cranks. Indeed, consistent with the crank nature of the movement, Fabio even repeatedly issued challenges for a debate on live television with him and Burzynski on one side and a skeptics or skeptics on the other side, a favored crank ploy that I wrote about just a couple of weeks ago, when antivaccinationist Andrew Wakefield used it. Let me tell you that it was a challenge that almost made me think about violating my general personal rule that I don’t debate cranks. In any case, pro-science advocates and patient protection advocates can’t be too complacent, because the sorts of stories used and spun so cynically by a propagandist like Eric Merola are stories that lawmakers, not informed of the background and lack fo science, can find compelling. Lawmakers also don’t know that getting fast track approval for antineoplastons is part of an explicit plan by Burzynski to get approval and then intentionally market antineoplastons off label, something most lawmakers would not look favorably upon if a drug company did it.

In the end, Merola makes it clear that the propaganda war will continue. Fortunately, it’s also clear from the Q&A that the Burzynski Clinic is hurting as well. Investigated by the FDA, its antineoplaston profit center on hold, one notes a rather desperate air about the entire affair, up to and including Eric Merola’s and Greg Burzynski’s (or, as I like to call the latter of the two, Mini-B) trotting out Fabio as the celebrity story that’s going to change everything. Meanwhile, the Burzynski Clinic continues to use cancer patients as human shields.

“I remember when dentists didn’t wear gloves, or masks, or eye protection.”

I not only recall the bare hands of my dentist circa 1970-1980, I also remember the hullabaloo from dentists when new federal regulations were proposed in 1989 requiring them to provide such protection for their hygienists.   At the time, the term “AIDS’ was less than 10 years old, and exposure to HIV in the U.S. was considered a death sentence.

The OSHA proposal was based in part on guidelines from the Centers for Disease Control and Prevention (CDC) on methods to reduce healthcare workers’ exposure to bloodborne pathogens, such as HIV and Hepatitis B.  The guidelines embraced the concept of “universal precautions” to protect against exposure to blood and other body fluids.   The CDC noted that in dental settings, saliva should be considered a hazardous body fluid because it is likely to be contaminated with blood during typical dental procedures.  The dentists scoffed.  No, they did more than scoff.

The sky was falling, and it would be the end of dental care as we knew it.  Children would be frightened by hygienists in surgical masks.   Gloves would hinder a dentist’s fine motor skills.   The excuses went on and on.   The letters flooded OSHA’s offices.  I worked at OSHA during the time and remember it well.  We answered letter after letter from Members of Congress who were writing on behalf of the dentists in their districts.   Why was OSHA killing the tooth fairy?

It was ridiculous at the time, and looking back, still ridiculous.

The American Dental Association (ADA) was leading the charge against OSHA’s bloodborne pathogens rule.  The ADA argued, among other things, that there was little evidence to show that dentists or hygienists were at risk of exposure to bloodborne pathogens.  “I don’t have any hygienists who’ve developed AIDS or contracted hepatitis,” the dentists would say.   Even if they admitted that they or their employees were at risk of exposure to bloodborne pathogens, the ADA insisted that dentists were highly trained professionals.  They could decide for themselves and for their employees if, or when gloves, masks for goggles should be worn.  Dentists didn’t need the government telling them how to run their businesses.

The ADA pulled out all the stops to try to avoid the OSHA regulation.   They participated actively in the public rulemaking process, organized letter writing campaigns and sought Congressional intervention.  In an op-ed published in the New York Times on November 12, 1989, New Haven, CT periodontist Avrum Goldstein expressed his opposition this way:

“…these regulations will bring about changes in the dentist-patient relationship and make it more difficult to practice dentistry.  By its nature, dentistry is an intimate occupation.  The dentist works within an inch of a patient’s head, probing sensitive, often tender areas of the patient’s body.  The mouth embodies our ability to smile, kiss, talk and eat—all very emotional qualities.  Patients needs a warm and trusting relationship with their dentist to help overcome fears and make necessary dentistry possible.  It will be more difficult to establish this relationship when the dentist is gowned, shielded, and masked.  [These barriers] will have a profound effect on the relationship between the dentist and patient.”

But shielding against deadly viruses with common sense protections would eventually trump arguments about emotions.  When the rule was finalized in December 1991, the ADA exercised their right under the OSH Act to challenge the rule before the U.S. Court of Appeals.  The court didn’t buy their arguments either.   In January 1993, the OSHA rule was upheld and would apply to dental practices.

Seeing my dental hygienists snazzy eye protection and matching gloves, the ADA’s opposition to OSHA’s bloodborne pathogens rule now seems so ludicrous.  But their claims about the demise of dentistry because of OSHA were just another in a long list of over-reaction to proposed worker safety regulation.  Some can probably be attributed to innocent misunderstanding, but others are orchestrated campaigns that spread false information to rally opposition to a new public protection.   (One recent example of the latter was the Farm Bureau’s attack on the Labor Department’s rule to protect young workers employed on farms from certain hazardous tasks.   Sadly, even the Obama Administration caved to their false claims.)

The Cry Wolf Project has compiled loads of quotes from industry representatives and others who alleged the terrible harm that will come from regulating wages, auto emissions, pharmaceuticals and other hazards.   Some date back decades, others are more recent.  A few key themes emerge from all the wolf cries: regulations are burdensome, costly and unnecessary.

During my next visit to the dentist, I’m going to ask him flat out:  are the steps you take to protect yourself and your employees from bloodborne pathogens burdensome, costly or unnecessary?

Clingfish (Gobiesox maeandricus).
Image credit: Thomas Kleinteich

Live Science posted a story recently on the sticking power of clingfish. Northern clingfish, like the one shown in the image above, live in turbulent waters off the Pacific Coast of North America. In order to cling to surfaces, the animals have what are called adhesion discs on their bellies that they use to hold on tightly to various surfaces.

Biologist Adam Summers at the University of Washington has been studying how these fish cling to surfaces. His research team put a variety of sandpaper textures into a tank of water and placed either commercial suction cups or dead clingfish on the sandpaper (to remove any physiological actors leaving just the adhesion discs to study). They then measured the force needed to pull either the cups or the dead fish off the various surfaces. The dead animals clung better to all but the smooth surfaces better than suction cups. The trick, they discovered, were tiny hairs (microvilli) that induce friction and help the adhesion disc stick to rough surfaces.

Summers and colleagues are now trying to create commercial adhesive structures similar to the microvilli on clingfish. They believe this technology will be useful in the advancement of medicine, home and technology.

Source:

Live Science

Speaking of Autism One, last week I wrote about just what a quackfest that yearly gathering of antivaccinationists and autism quacks. Although it was a throwaway line, I mentioned that our old “friend” Jake Crosby was slated to give a talk entitled Challenging the Consensus Through Effective Advocacy. I hadn’t planned on mentioning it again, but then last night I got one of those blogging gifts that bloggers dream about every day, a target topic so big, fat, juicy, and full of comedy gold that it makes you want to drop everything else and make it the topic du jour. Now, you might ask why I didn’t take advantage of the topic of Jake’s upcoming talk last week when I first mentioned it. A fair question. The answer is easy. Last week I didn’t have the handout containing the slides for his talk in my hot little hands. Thank you my readers for pointing out that in the interim since last week Jake had given me this most excellent gift. Upon reading the slides, I couldn’t help but think of Dale Carnegie, because Jake’s talk looks like a warped version of Now Not To Win Friends and Influence People, antivaccine version.

The hilarity begins right at the very beginning of the talk, in which Jake promises to show us six things, beginning with “why engaging the other side is so important.” If Jake’s past behavior is any indication, engaging the other side is propaganda. The problem, of course, is that Jake’s just not very good at it. His version of “engaging” the other side basically involves stalking scientists like Dr. Paul Offit (or myself) at talks, waiting for the Q&A, and then basically making an obnoxious ass of himself. Jake also claims he will demonstrate how to “effectively frame the debate.” Of course, there is no real “debate.” It’s a manufactroversy, in which antivaccine cranks like Jake try very, very hard to convince you that there really is a scientific “debate” when there is not. The evidence is so overwhelming that vaccines are not correlated with autism or all the neurodevelopmental disorders and autoimmune diseases that antivaccinationists try to pin on them. Neither is the mercury-containing preservative thimerosal, which used to be in childhood vaccine until around 2001-2002.

The next two objectives are to “follow the money” and “track down connections.” When Jake “follows the money” and “tracks down connections,” you know hilarity will ensue. You might remember a few years ago, which was the first time I had a little fun at Jake’s expense over his “tracking down connections” between Adam Bly and Seed Media and, of course, big pharma. Of course, back then I was more favorably inclined towards Jake than I am now. He was, after all, still barely out of high school then and had clearly fallen in with the wrong crowd, at least in terms of critical thinking, science, and ethics. Also, back then, I thought he was still potentially salvageable. Four years and and a ridiculous number of screeds against scientists and journalists later, Jake is fully an adult now and doesn’t rate such consideration considering how low he’s chosen to sink. These days, he’s accusing me of having undisclosed conflicts of interest that are neither undisclosed nor conflicts of interest and using the tired old “pharma shill” gambit. He’s even gone so far as to insinuate conflicts of interest and nefarious behavior by a judge. Not a great idea if you don’t have really strong evidence supporting your accusation.

Oh, well, there are fits and starts in developing as an antivaccine propagandist. I do find a false dichotomy that Jake lays down highly amusing:

• Is the problem that the government is not doing enough?
• Or is it that the government is doing an awful lot, but to cover up that vaccines are causing the autism epidemic?

I’ll take “None of the above” for $2,000, Alex.

Jake’s characterization of scientific consensus is rather amusing, too. He laments that the Institute of Medicine (IOM) defines “consensus” using a “small group of panelists” and “closed meetings.” One is tempted to respond: “Scientific consensus”? You keep using that term. I do not think it means what you think it means. A scientific consensus is developed by far more than just committees associated with the IOM. It’s developed by the community of scientists at large studying a problem, and the overwhelming consensus is that vaccines do not cause autism. The IOM reports, such as the most recent one a few months ago, are merely a reflection of that existing consensus, not a mandate. Yet it serves the purpose of antivaccinationists to represent the IOM as some sort of shadowy cabal in the thrall of big pharma dictating the “scientific consensus” from on high. It’s utter piffle, of course, but that’s never stopped Jake before. Nearly everything he says is utter piffle.

Jake saves the best for last, though. If you thought the first half of his talk was pure comedy gold (and it was), then you might want to take a deep breath before diving into the last half, in which he “defines the problem” and tells the tale of his advocacy. Of course, his advocacy seems to involve smearing anyone and everyone who doesn’t toe the line on the now discredited myth that mercury in vaccines causes autism. Most amusing, that seems to include a lot of people ostensibly on “his side.” He attacks what any reasonable person would consider rabid antivaccinationists, such as SafeMinds, the Canary Party and Mark Blaxill. I’m guessing that he’ll rehash his overheated conspiracy theories that he dreamt up when he decided that SafeMinds was far too squishy on vaccines and “stole” the antivaccine Congressional autism hearing away from Jake’s new best bud forever, Brian Hooker. I don’t really want to rehash all that old territory again; so I’ll refer you to a bit of the back and forth bickering between Jake and his former allies. One really wonders how well Jake’s broadsides against some of the leaders of the antivaccine movement who have been at Autism One in the past will go over with this year’s attendees. (Actually, one wonders how well attended Jaek’s talk will even be.) The list of “culprits” on Jake’s part includes Mark Blaxill, Sallie Bernard, Lyn Redwood, Ginger Taylor (oh, goody!), and Gary Kompothecras, the last of which came to me as a huge surprise. He’s a guy we’ve met before, a prominent antivaccine chiropractor in Florida who was affiliated with the father-son antivaccine tag team of Mark and David Geier. Apparently, in Jake’s fevered imagination, Kompothecras told Brian Hooker about the Congressional hearing that got Brian Hooker, and through him, Jake Crosby all hot and bothered. Is it true? Who knows? Who cares? I just like seeing Jake fire napalm-grade burning stupid at his former allies.

All of this brings us to the grand finale, in which Jake explains his methods, in which you—yes, you!—can be just like Jake. He explains how to look for conflicts of interest in obituaries (nice touch!), wedding announcements, Twitter accounts, Facebook profiles, news articles, and the like. The hilarious thing is that his handout says that not all publicity is good publicity, particularly if you’re “trying to convince people of a scientific truth.” Of course, Jake’s definition of “truth” is more akin to “truthiness,” not truth, and, besides, there is no such thing as “scientific truth.” There are scientific findings, which are always provisional and always changeable in the face of new evidence. The problem, however, is that there just hasn’t been any convincing evidence that vaccines are in any way correlated with autism. Instead of actually producing evidence, Jake finds it easier to stalk scientists and harass them. He purports to tell his audience how to deal with how speakers might respond, and this is the part of the talk that had me stifling a full-on laugh, particularly when he says that speakers might respond by bluffing, lying, changing the subject, ad hominem attacks, or “ordering you to leave.” Of course, I did none of these things when Jake tried his “technique” on me.

I lost it when I read the slides telling the audience to try to engage with the speaker after the talk and what to do “if you get attacked.” First, Jake says “don’t attack back.” Of course, in my encounter with Jake, he rather forgot his own rule. When I told him that he didn’t know what he was talking about, he called me a liar. Bad boy, Jake. That’s not taking your own advice.

In the end, I guess that Jake wants to create an army of mini-Jakes to harass pro-science advocates and skeptics speaking out against the antivaccine movement, the better to harass them. I can hardly wait the next time I give a talk.