On Stanislaw Burzynski, the Streisand Effect, and Standing Up for Skeptical Bloggers
December 19, 2011
An Interview with Andy Lewis of Quackometer
On the 20th of November, 2011, the Observer published a moving article about a four-year-old girl, Billie Bainbridge, and an effort to raise money to seek treatment for her inoperable brain tumor. Despite the noble goal and heartwarming fundraising campaign featuring the contributions of a number of celebrities, including rock band Radiohead and R&B artist Cheryl Cole, the treatment being sought was questionable: the family wished to send her to Stanislaw Burzynski’s “advanced alternative cancer treatment” clinic in Texas.
A number of bloggers who had been keeping track of the claims of this clinic over several years voiced their concern that patients like Bainbridge and their families were risking time and money and putting their health in danger. The first blogger to report a threat from an employee of the Burzynski Clinic itself was Andy Lewis of Quackometer, who has been lending support to fellow bloggers and maintaining a vigilant approach to communicating the facts despite significant pressure to be silent.
Kylie Sturgess: Who is Stanislaw Burzynski?
Andy Lewis: Well, that’s a very good question. As far as I can understand, he’s a doctor based in Texas who a number of years ago came up with an idea that certain sorts of chemicals were missing from cancer patients, and if you could inject those chemicals back into the cancer patient then you might cure all sorts of cancers. He found these chemicals in the patients’ urine, so he started off extracting these compounds. If this had worked, it would have been fantastic. This was an idea.
The problem was this was thirty years ago. Since then no real evidence has emerged that I have seen which shows this is anything but an idea.
Kylie: In fact, the Burzynski Clinic is in the United States? So it’s not even an English thing, all the attempts to silence criticism.
Andy: Absolutely. Most people in England, a vast majority of them, never heard of this chap. But ten days ago in a Sunday paper an article was published that highlighted this clinic. It was a heartbreaking story, really, about a young girl with a brain cancer that was just highly inoperable. And her parents were trying to raise hundreds of thousands of dollars to send her over to Texas for what might be the last months of her life, which sounded tragic. And when you look into this clinic, it looked like this was not in her best interest, I would say.
Kylie: So how did the Observer get ahold of this story in the first place? There are plenty of people who, at a very desperate time in their lives, are trying to find a cure for cancer. How did this group step in?
Andy: I understand that the little girl was the niece of an editor at the paper. So it was his story, really. You understand the problem here. It probably never went through a science desk or a health desk or anything like that at the paper. So it never really was checked. It was a feature article. This happens a lot in papers, where health claims sort of slip by the normal editorial process. But this time it was quite an important, serious one: people were being lured into this idea that our National Health Service is not offering this lifesaving treatment and these parents are having to raise hundreds of thousands of pounds through charitable concerts and so on to send her to the United States, which is the only place willing to treat this poor girl.
It played into a lot of these myths, I think, that the U.K. press like, about how our National Health Service is failing people and how the United States is so great with its free market approach and so on. It really is a collection of myths. And unfortunately because of that, I fear other people will be sucked down that route.
Kylie: In order to be accepted into the trial, according to the article, the family needed £200,000—it’s an incredibly compelling story, isn’t it?
Andy: Yeah. I think the sheer expense of it added to the allure, really. Who would charge that much for treatment that didn’t work? It’s even more disturbing because Burzynski is not allowed to offer this treatment on its own. He’s only allowed to treat people within a trial. So what he seems to be doing is setting dozens of trials—and he’s been doing this for decades now—and then asking the patients to pay money to join the trial. Even if this was a working treatment, I’d find it ethically very problematic. Because obviously you’re asking parents of terminally ill children to essentially mortgage their homes and raise huge amounts of money for one last chance for their child’s life.
This doesn’t happen elsewhere in medicine, really. This seems to be a pretty unique case, where the doctor is charging people to join trials. That raises lots of red flags all over and I think that’s a question that this clinic really needs to respond to.
Kylie: The thing that really got me about your article, which is on Quackometer.net (“The False Hope of the Burzynski Clinic”), is the part where you mention that this isn’t the first time this has happened.
Andy: I think lots of people were going back through the archives and so on and searching the internet for it. This seems to be cropping up fairly regularly, where young children have cancers and are obviously in a very poorly state and the parents are raising money. This is the sort of heartwarming story that tends to crop up in local papers quite regularly, but I think this is one of the first times it’s appeared in a national newspaper. So this would be a fairly common occurrence in how this clinic appears to operate: by asking patients to rely on the goodwill of friends, family, and other people to stump up huge amounts of money for this treatment, which appears... well, there’s no good evidence that I’ve seen that it’s effective.
Kylie: There’s even a film that’s been produced by the Burzynski Clinic in order to promote its claims?
Andy: This is where it gets really disturbing: Burzynski appears to be up against the Texas Medical Board, next April I believe, where he’s been charged with various things—using off‑label medications inappropriately and engaging in practices that might not be in the best interests of his patients. It’s online now, the sort of [questions] he’s got to answer to this committee. But it looks like there’s a chance that he could lose his license. If he is doing things that aren’t above‑board I think it would be a very good thing indeed.
You mentioned this film. This film is supposedly being made by an independent filmmaker. It’s ninety minutes long, showing what a wonderful doctor Burzynski is. It’s essentially a conspiracy‑theory film about how the medical profession is trying to stop this wonderful new cure from being given to poorly children. It doesn’t hold up to much scrutiny, really. He has a number of case histories in there that are not conclusive at all by the look of things. And the rest of the film is just a conspiracy theory. It may be that this clinic is whipping up support. He seems to get a lot of very, very emotional support from people who believe he’s doing wonderful things, particularly in the alternative medicine world, where the story plays into their worldview very nicely: that there is such a thing as the “cancer industry” that keeps people sick and pumps them full of poisons and makes huge amounts of money from dying people. It seems to me the exact opposite is true here.
Kylie: Why attack bloggers? How come you have suddenly appeared on their radar as someone worthy of getting threatening letters?
Andy: Well, I mean, I think one of the most amazing things about today is that bloggers can automatically appear quite high up in Google searches and so on. People have readerships and they talk to each other and reference each other. So people can easily find out if there are dissenting voices out there these days. That’s quite difficult for all businesses, really, legitimate ones as well as illegitimate ones. How do you manage PR around that? And obviously there are firms out there and people out there who specialize in trying to shut people up if they don’t like what you’re saying. And obviously you can be quite aggressive about that if you want to, particularly in the United Kingdom, which has some libel laws that are quite friendly to such approaches.
So I think it’s an easy route, really; rather than address the concerns raised by lots of people about this clinic, it’s much easier to try and make them disappear. It looks like for a number of months now a chap called Marc Stephens has been writing to bloggers worldwide and threatening all sorts of horrible things against them unless they remove their posts. Some people have; other people haven’t. And I think it just hit the perfect storm in the past week or two by threatening one too many people.
Kylie: Looking at your site, it appeared to have started with you, in fact. There’s a blog post called “The Burzynski Clinic Threatens My Family.” What’s the experience been like?
Andy: Oh, good grief!
Kylie: Sorry, but it has to be asked! It looks like it must have been dreadful.
Andy: It was within a week of my little baby girl being born as well. To be honest, it’s the second most important thing that’s happened to me this week. But it’s still quite amazing, and a large number of people have been talking about this on Twitter and writing posts. One of the most amazing things was that I think on Friday evening I got a frantic phone call from my web host saying, “What on Earth is going on with the servers?” I’m going to give them a plug now: Positive Internet. They’re wonderful. They wanted to make sure that their servers were Stephen Fry–proof! They wanted to make sure if Stephen Fry tweeted about it they could cope. So they spent an hour or two hardening up the servers and making sure everything was cached properly, which was exciting and fun.
And sure enough, Stephen Fry tweeted on Sunday, I believe, about all of this. And suddenly there were 100,000 hits on the server. And it stayed up, which was fantastic. From a technical point of view it’s been quite interesting. From an emotional point of view, my wife doesn’t know what’s been going on this week. And I didn’t want to worry her with trivialities like this, really. So, we keep our voices down while we are talking, OK?
Kylie: Well, one good thing is that the Internet is certainly shouting loudly about it. It is starting to become what is known as the “Streisand effect,” isn’t it?
Andy: Yes. I’m not quite sure. I think Barbra Streisand—I hope I’m right here, because I don’t want to libel her—a number of years ago tried to suppress someone saying something bad about her. I don’t know the details at all.
Kylie: I think it was photographs of her house. She didn’t want them out in the public eye. Someone said, “Well, it’s a house. Deal with it.”
Andy: Right. She was perfectly right to try and do that. The problem with the Internet is that things can get out of hand very quickly. This happened a few years ago when the Society of Homeopaths tried a very similar thing. They threatened me with all sorts of things for saying that their Code of Ethics was worth nothing, because they didn’t stop their members from trying to treat HIV and AIDS, which was likely to kill them. They didn’t like that. So they tried to threaten me there. Within a few days, my post had been replicated to about 100 sites.
So, far from shutting up criticism, the effect is that a lot more people tend to see it, which is what happened here. My original post, the one you mentioned, I think over the day had about 4,000 or 5,000 readers. Since they tried to threaten me, we have had well over 100,000 readers now. So, in general, I think it’s not a good idea to threaten people. It’s always best to try and talk to them first.
Kylie: Speaking of threats, it has become even more nefarious now. They started to threaten a seventeen‑year‑old blogger, Rhys Morgan, as well?
Andy: Yeah, Rhys Morgan. I knew about Morgan. Part of the reason I wrote about it was I knew that Morgan was being threatened. This was taken quite seriously to begin with. Morgan is seventeen. He became quite famous a year or so ago because he suffers from Crohn’s disease. He was looking on various websites, partaking in forums and so on that were saying people with Crohn’s disease ought to take something called Miracle Mineral Supplement, I believe it was called, which is basically bleach. It has been a worldwide thing.
He said this is nonsense. He was attacked by other people with Crohn’s for trying to stop what might be a really good treatment. People who believe in these things really tend to get quite emotional about them, don’t they?
Morgan said, “No. This is nonsense.” He was hounded off the forum. So he tried to do something about it. I think he wrote to Trading Standards. He wrote to the Welsh government as well, and various other people. He got on the BBC. Eventually I think a lot of websites were taken down that were selling [the product].
For his efforts, James Randi gave Morgan an award as Skeptical Activist of the Year or something like that, which is fantastic for having been sixteen years old [at the time]. So he’s got a bit of form. He decided to make a bit of a hobby of this, trying to expose things.
So he wrote about Burzynski six weeks ago now. He then got this horrible letter. What was even more amazing was this Marc Stephens chap, who wrote a very legalistic sounding letter. He also [mailed] a picture of Morgan’s house to him, saying basically, “We know where you live,” which is quite incredible.
What Stephens didn’t know is that he was talking to a schoolboy! Morgan has got a lot of good friends, people like Simon Singh, who was threatened by the chiropractors a few years ago. Singh gave him some very good advice.
So Morgan wrote to Stephens, saying, “I received your email. But I’ve just got to finish school for the day and then I’ll get back to you.” This must have been quite a shock to Stephens. I’m not sure Stephens has that much insight, because he continued to threaten him anyway, threatened to tell his school and all sorts of things.
That’s bad now, because I can generate so much publicity. But someone threatening a seventeen‑year‑old boy is going to get in the newspapers without a shadow of a doubt. So that was a very, very bad tactical mistake on Marc Stephens’s part.
Kylie: Who exactly is Marc Stephens? What part does he have to play in all of this?
Andy: He wrote to me claiming to represent the Burzynski Clinic and so on. The letter looked like a lawyer’s letter, though it didn’t explicitly say that. But a bit of searching quickly [revealed] that he doesn’t seem to be registered. Also, there is someone called Marc Stephens with the same spelling, M‑A‑R‑C, who works for the Burzynski Patients Forum, or something like this, as a PR person. So it looks like he is associated with this doctor, working in marketing and PR. Quite what the relationship [entails] is still a little bit up in the air. But we know emails have been [exchanged] between the Burzynski Clinic and Stephens. So we know that, well, it appears that the Burzynski Clinic was aware of what Stephens was doing. Whether they sanctioned it or not, I don’t know.
So the Burzynski Clinic [officials have] some questions to answer, really. Did they tell Marc Stephens to do this? Were they condoning? Were they happy with him doing it? What is their relationship with him exactly? Do they want to stand by what he said or did they want to disassociate themselves? I’m quite happy for them to just disassociate themselves from his threats. But that still means the Burzynski Clinic has a huge number of questions that need answering about how they it is treating its customers.
Kylie: Obviously Simon Singh is stepping in to help.
Andy: Yes. Well, do our libel laws help? No, they don’t. The laws are that people can be stupid here. Still, if the Burzynski Clinic decided to be really stupid, it could cause a lot of problems for an awful lot of people. So, people are speaking out with some risk, shall we say, that things could get pretty nasty. There is no automatic protection for voicing our concerns. What Simon Singh found, as other people have done, like Ben Goldacre and other people who have been defending malicious suits, is that even if you win it can cost you in time and money.
This is exactly why these people make these threats. They know that once they have made a threat it’s a no‑win situation for you. Something needs to change. Hopefully, in the Queen’s speech this year, the government will commit to making a more robust set of libel laws.
Of course, it has got to be seen from both points of view. We have got to protect people from the newspapers, as well, printing malicious things. So there is a balance to be found here. There is not an easy path through here, but there are a number of obvious improvements that could be made that I think would improve the situation to no end.
So let’s hope the government doesn’t flinch on this one—doesn’t bend to the power of vested interests that want to preserve their right to issue threats—and makes Britain, once again, a place where free speech is valued and protected.
Kylie: So, what is going to happen next? Obviously the network of bloggers is uniting together in order to raise awareness. Do you think that the media should be stepping up, as well?
Andy: Well, absolutely. I understand that some things are going to start being published now. It has reached a critical mass. So I understand that tomorrow there will be newspaper articles on this. I don’t know the specifics yet. What I would really like is the original newspaper, the Observer, to tackle this.
They really shouldn’t be trying to ignore this. So we will wait and see. I think worldwide, we are starting to see newspapers in Texas printing things, which is great. It’s the home of the Burzynski Clinic. The British Medical Journal, I understand, is going to be writing something. So this has gone beyond a few people at home at their desks writing blogs now. It’s going to be raising awareness of these issues.
I think entertainers are involved in raising money as well; it would be good for them to start engaging in conversation. I understand why they’re raising money for this poor little girl; I would too. I think now that they have committed to do it, of course that is a very difficult decision to turn back from. But there is a discussion to be had about how this money is spent. I know for the parents it’s going to be impossible, I would imagine, to turn their backs on the hope that this person has raised for them. I can’t imagine what it must be like. I don’t expect them to take part.
But I think there are many things here that need addressing whether you are a celebrity endorsing cancer treatments, whether you are newspaper writing about them, whether you are the clinic itself offering them, whether you are a charity that claims to help cancer patients—but really what you are doing is funneling them towards quacks. I know there are quite a few charities that do that.
There are lots of issues here that I think, hopefully, are going to be discussed and raised. That will help prevent people making terrible decisions in the future.
Kylie: Where can people go to find out more and keep up to date with the events that are going on?
Andy: Well, come to my blog, Quackometer.net. There are a number of good websites around. If you search for Josephine Jones’s blog, she is collating a list of sites that are writing about this. It’s getting up near 100 now, I believe.
Go to Rhys Morgan’s website, obviously. I think Googling “Burzynski Clinic” now will ensure you find lots and lots of discussions going on, which is something that I’m sure the Burzynski Clinic is not too happy about!
Kylie: No! Thank you very much for talking to me, Andy Lewis.
Andy: Thank you very much indeed.
True to Andy Lewis’ words, on Tuesday, the 29th of November, the Guardian newspaper reported on Rhys Morgan’s posting of the entire correspondence from Marc Stephens on his blog. The Burzynski Clinic has revealed that Stephens was only a web marketing contractor and that “no one approved [Stephens] sending pictures of Morgan’s house to him.” At time of writing, more and more bloggers are continuing to question claims by the Burzynski Clinic.