The Birthday Of Burzynski – Skeptics Fundraise For St. Jude Children’s Research Hospital
February 1, 2013
On January 23, the Skeptics for the Protection of Cancer Patients delivered a birthday present to Houston cancer quack Dr. Stanislaw Burzynski and the Burzynski Clinic: a donation of around $13,000 raised in his name to St. Jude Children’s Research Hospital – with a request that the clinic match those funds for the hospital.
While the effort was initially to raise $30,000 (which happens to be as much money as it takes to enter a clinical trial of antineoplaston treatment at the Burzynski Clinic) every dollar helps and the site will continue to accept donations. I spoke to Bob Blaskiewicz and David Gorski about the fundraiser, and why the Burzynski clinic is such a concern.
Dr. David Gorski writes at Science Blogs as “Orac” for Respectful Insolence and at Science Based Medicine. He is an oncologist, cancer researcher, and patient advocate, and has written extensively about Burzynski.
Dr. Robert (Bob) Blaskiewicz is a Marion L. Brittain Postdoctoral Fellow at the Georgia Institute of Technology, where he teaches courses in writing and twentieth-century American literature. He specializes in World War II veterans’ writings, extraordinary/paranormal claims and conspiracy theory. He co-edits the blog Skeptical Humanities.
Kylie Sturgess: My first question is, why this joint fundraiser/awareness raising? Isn't it the job of the government to regulate medical claims or consumers to “buyer beware”? Why this particular approach?
Bob Blaskiewicz: What I'd really like to see happen is to turn a situation that is really quite bad into something positive. The magnitude of suffering that we see at the Burzynski clinic. It's something that I haven't really seen before. Since I've started following this issue, since about a year ago when Rhys Morgan and the other bloggers were threatened by people who'd been hired by Burzynski, my interest has only grown. I think that the best thing that we can do is put our money where our mouth is and support good science, while drawing attention to what's going on at the Burzynski clinic.
Kylie: David, Bob summed it up as “really quite bad.” I think the claims go far beyond that! You've been blogging about Burzynski for some time—what’s your take on his claims?
David Gorski: There are so many of them that it's hard to know where to start! There are two main things that he does. The first dates back more than thirty years, and that's the antineoplastons.
Basically, back in the 1970s or so, maybe even earlier, Burzynski claimed to have discovered endogenous compounds in the body, made by the body, that inhibit cancer. That's not really a new idea; there are such compounds, I used to study one back in the 90s.
The problem is, he never had the evidence to demonstrate that what he claimed were these compounds, which he dubbed antineoplastons, actually did what he claimed they would do. He has some in vitro data that suggests that they might have some activity against some cancers. But when it really came down to it, in human trials, Burzynski is yet to produce human trials that are convincing evidence that these compounds do what he claims that they do.
The second angle is what he calls “personalized gene targeted cancer therapy,” which is a recent development. This is basically him jumping on the bandwagon of personalised medicine by sending patient samples out to this commercial lab; I blogged about that about a year ago.
But, in any case, he's basically doing personalized therapy incompetently. What worries me about this is that he could very well besmirch the name of personalized therapy while it's still in its infancy and hasn't really been shown to reach its full potential—that we all hope and think that it probably will reach. He also charges a ton of money for what he’s doing.
The other thing that patients don't understand is he uses a lot of chemotherapy, even though he claims to be using natural, non‑toxic methods.
Bob: I haven't heard much from the man himself. I hear a lot more from his patients parroting apparently what they've heard at the clinic that it's non‑toxic. But when it comes to selling it, his most ardent promoters are people who have survived his treatment. I'm sure they're completely sincere in that, but we just don't have the evidence that separates the background noise, the spontaneous remission, or the misdiagnosis from the actual effect of these drugs. And so, he just doesn't really have grounds to charge that much.
If he has a cure for these childhood brain tumors, he may well have earned his $30,000 a pop or more. The treatment often runs into the hundreds of thousands of dollars. But, so far, he just hasn't produced the evidence to convince specialists that he's doing something useful.
Kylie: Why is he getting away with it?
David: Well, Kylie, that's where I was about to jump in, because the one thing that he does that burns me, as a cancer doctor and a researcher, is that he charges patients to be on his clinical trials. There are rare exceptions, and he's not one of them, but it's generally considered highly unethical to charge patients to be part of a clinical trial. Pharmaceutical companies don't even do that. If they did, people would be totally up in arms, but he charges patients to be in his clinical trials.
Now he's had since the mid‑90s about sixty some odd clinical trials, most of them Phase II, which is one of the more preliminary ones. He never really publishes in any decent journals the results of these clinical trials, but he apparently kept enrolling patients on them. It just drives me crazy, and I can't figure out how he does it, or how the FDA keeps letting him do it, but he does.
Bob: This will be something that the newly‑formed group, the Skeptics for the Protection of Cancer Patients, is going to investigate.
David: IRB in the U.S. stands for Institutional Review Board. All human subject research in the United States that is funded by the federal government has to abide by the Common Rule, which is a set of regulations governing human subjects’ protection administered by the Department of Health and Human Services. Not all research has to abide by the Common Rule, but most of it ends up having to. Anything funded by the federal government—that’s a no‑brainer. Anything done at a university that's funded by the federal government generally, or that receives federal funding falls under that. Any research being done to obtain FDA approval for a treatment, or a drug, or a device has to abide by the Common Rule, so that's the deal there.
He has his own IRB. The head of his IRB is a crony of his, someone who works for his clinic. These IRBs are supposed to be somewhat independent, and at universities, they are. Even though they are part of the university and made up of faculty and various people, they're very much kept off to the side, so that the university or individual researchers can't pressure it.
But Burzynski basically has people who work for him, as far as I can tell, in his IRB. It reminds me a lot of Mark and David Geier, the anti‑vaccine guys who basically did the same thing when they were trying to do clinical trials of their use of Lupron in autism.
Kylie: Fascinating. I guess that immediately leads on to my next question which I'll aim to you, Bob. What we're talking about here is people. When David's talking about clinical trials, we're talking about people who are putting their trust into these claims that Burzynski is making. What are some of the big cases that you've encountered, ones that you've documented?
Bob: This poor kid, Chase S., was in a coma for a long time. He steadily declined once he was on the ANP, and his parents were devoted to an alternative medical regime, fussing over the minutiae of diet. Meanwhile, this kid is just losing more and more functionality, and then he's basically lying in state in his parents’ living room for months. Even after he was no longer able to communicate, they're bringing in “intuitives” to talk to him, much like facilitated communication. You really had a sense that these parents just had a really hard time accepting the reality of the situation.
These people are extremely vulnerable. In some ways, it seems to me that some of these patients are almost determined to encounter every mystic, and faith healer, and quack. But that means the system needs to be better to help catch them before they end up in those people's clutches.
I've come across so many patients who have gone into the clinic with high hopes, and they always get that, “We think that there is a chance that we can do something.” For someone with a brain stem tumor, that's the first good news that they've had in their entire treatment. They latch onto that.
Over and over, we see symptoms that really look like they're getting worse being interpreted by the clinic and reported by the patients as something like a healing crisis, or they're getting well so fast it's hurting them. There's something about that strikes me as not right, especially when we see the outcome.
Kylie: I guess my next question is for David then. Are these so‑called cures growing in popularity? Has it become a big concern not just to the medical establishment but everyone in general? Are you getting more and more people saying, “I'm turning away and going to these alternative practitioners because I can't see medicine providing me with any hope?”
David: There have always been these sorts of things. You go back to the 1970s and 80s, you had Laetrile and various other alternative treatments. Just over the border from San Diego, in Tijuana, there are all sorts of alternative medicine clinics that cater to Americans. They've been there a long time. They're still there. The question is whether we're just hearing more about it because of the power of the Internet, or whether it's easier for patients to find out about them, or hear about them.
There's a group of Burzynski patients – Bob knows more about this than I do – that have this online community. They're very web savvy. They know how to get positive news and anecdotes and stuff about Burzynski high in the Google rankings. They suck patients in and they're true believers.
Bob: The Burzynski patient group is... I don't think they're intentionally deceptive, like you said—they offer powerful testimonials. There's a reason why testimonials are constantly repeated in churches, for example, about conversion and salvation. You get a very similar type of thing going on in the Burzynski patient group. It strikes me as cult‑y.
David: It's a lot cult‑y!
Bob: Cults thrive on dependence. The people there are dependent on an authority figure. These people are totally dependent on Burzynski. They think he has the only thing that will save them.
David: There's definitely a cult of personality about him!
Bob: The other thing that has been, I hate to say it, but an effective recruiting piece has been Eric Merola's movie, “Burzynski,” where cancer is a serious business. He doesn't appreciate the irony of that name.
David: No, and I didn't realize that movie was really that effective. I watched it and reviewed it a year, year and a half ago, and I couldn't believe how blatant it was. It was badly made. The narrator had this creepy, electronic undertone to it. It was low‑quality mp3 or something. It was so blatantly one‑sided that I can't believe anyone would believe this stuff, but people do—and he's making a new one!
Bob: You see it on Twitter hashtag. When you look at the number of hits, in the hundreds of thousands, they've reached a lot of people. A lot of people who firmly that there are forces conspiring against them and meaning to keep people sick with cancer because it's so profitable. What they don't seem to realize is that cancer, it's a disease that is eventually going to catch up with everybody. Whoever comes up with treatments will be able to save the lives of the people who are supposed to be guarding the cure.
David: There's something that drives me crazy too, the conspiracy theories. I've written about this before—think about it: cancer scientists, doctors, oncologists. Cancer is not just one disease, it's hundreds of diseases, so it's really, really hard. In fact, individual cancers are arguably hundreds of diseases, because cancer masses are heterogeneous. The cells in one part could be very different from the cells in another part.
But I digress. Think of it this way... Do you know people who had cancer? Do you have close relatives or friends who have come down with cancer or died of cancer? Almost everybody has. If you're above the age of about forty, it's got to approach 100 percent. Can you believe that all these scientists would be keeping this secret if they thought that they could use it to save their relatives who might have come down with cancer?
Think of the hundreds of thousands of people who would have to all keep this secret. It's ridiculous. Then, of course, this small band knows about it. It must be the most incompetent conspiracy ever.
Kylie: Of course, all of this revolves around the power of the Internet. Burzynski’s patients have been using the power of the Internet to promote him and downplay critics. Now, you've got a fundraiser that you've been organizing. What's the goal? What's going to be happening with this fundraiser?
Bob: What we're trying to do is raise $30,000, the cost of starting treatment. At least the most recent quote that I've seen for starting his antineoplaston treatment. Raise that money in honor of Stan's seventieth birthday. What do you get the cancer quack who has everything? So, we're going to try to raise this money for St. Jude Children's Research Hospital, which does fantastic work, and who helped a friend of mine when he was sick.
It seems like the most effective thing will ultimately be legislative reform, to protect subjects of cancer drug trials. But, in the short term, we want to raise $30,000 by his birthday, donate it to St. Jude in his name. And then, on his birthday, issue a challenge to the clinic to match what skeptics raise, regardless of whether or not he decides to participate. I have a feeling it's hard to shame the shameless. But regardless of whether or not he participates, we'll be able to say it's probably the best thing ever done in his name for cancer research.
David: Also, St. Jude's is an incredible cause; basically, no patient ever pays anything at St. Jude's. Regardless of Obamacare or whatever, right now, in this country, we do not have universal health care like most other countries in the developed world do. So having a place where children with cancer can go, where their families don't have to pay anything is huge in this country. Hopefully, if we get to the point where we have more of a universal health care, then more of that money could go to research, instead of paying for patients who don't have insurance.
We want to help people who are really fighting the good fight, do what they can do.
You can find out more about the challenge at the Skeptics for the Protection of Cancer Patients.