Here's a warning for anyone out there considering blogging or tweeting anything questioning the greatness of cancer-curing Houston doc Stanislaw Burzynski: You will probably be threatened by the head of marketing for the Burzynski Patient Support Group.
We first heard about loose cannon Marc Stephens's weird diatribes Monday, when a guy in England informed us that Stephens had earlier this month threatened 17-year-old Welsh blogger Rhys Morgan with a libel suit if Morgan didn't remove any of his comments questioning the validity of Burzynski's claims. Morgan is one of several bloggers around the world that Stephens has been threatening.
Giving the false impression he was an attorney representing the Burzynski Clinic, Stephens demanded Morgan "immediately cease and desist in your actions defaming and libeling my clients. Please allow this correspondence to serve as notice to you that published libelous and defamatory information." Showing off his legal chops, Stephens busted out the all-caps to admonish Morgan that he best "GOVERN YOURSELF ACCORDINGLY."
Morgan replied cordially, explaining that "I am confirming I have read this email. I am, however, at high school for the rest of today....I notice you have stated that some tweets are defamatory. I would appreciate you linking to them please so I can deal with them appropriately."
Stephens never did share the allegedly defamatory passages, but he did write, "Please forward the notice to your parents if you are actually in High School....Because your statements have been read by third parties you are now also interfering with my clients business, and you are emotionally effecting Dr. Burzynski's as well as his cancer patients around the world [sic for spelling and grammar]." He ordered Morgan to "provide a public apology to Dr. Burzynski and his patients and post it on your websites, and social media sites."
Morgan first learned about Burzynski through the "Hope for Laura" campaign, wherein folks are raising money to send a young mother in Kent to Burzynski for treatment of a brain tumor. (Morgan explained in his blog that there have been many other similar campaigns, and Radiohead even donated a guitar to raise money for one girl's treatment.)
Morgan explained in an e-mail to Hair Balls that "I'm generally a science-based skeptic. I always do research into health claims I hear. When I saw the Hope for Laura campaign, I checked out the website and saw the costs....Then I looked for the evidence [of Burzynski's treatment], found none and instead [found] a bunch of conspiracies against the FDA. Typical of what other quacks say and do."
When Morgan figured out that Stephens was not a lawyer with a valid claim but just a goofball (our words, Stephens, not Morgan's, so direct your idiotic and hollow legal threats to us, not him), he didn't bow to his demands.
We've left several messages for Burzynski Clinic spokeswoman Renee Trimble, trying to find out if they knew about -- or approve of -- Stephens's actions, but we haven't heard back. That's what we call primo PR, Renee! Keep it up! We also e-mailed Stephens and have yet to hear back from him, either. But maybe we will as soon as he finds out that "third parties" read this blog. (Usually, we write for just first parties, and in some cases even second parties, but we figured this was deserving enough to reach out to that coveted third-party market.)
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We hate to run the risk of getting all saccharine, but we just want to say that every month or so, we hear from a loved one of a person with cancer who's considering going to Burzynski's clinic, and they ask us for advice, which we, as mere reporters, cannot give. If you ever want to tinker with your notions of the existence of God, or of justice, then we suggest you talk to a father of a six-year-old girl dying of brain cancer. That's what we did a while back. He explained that, not being a rich man, and being warned of the severity and time-sensitive nature of his daughter's condition, he was under the impression that he had one shot to save her life. One chance to liquidate every asset and every ounce of his life savings and put it all on one treatment, and hope it was the right one. Burzynski's treatment would wipe him out financially, so if it didn't work, he was afraid he wouldn't be able to afford any other treatment.
And that's basically what we've been wondering about this whole time. Burzynski fanatics like Stephens operate under this rubric whereby it's some vast Big Pharma-doctor conspiracy to keep kids sick and prevent Burzynski from helping people. But we think it's the exact opposite. In the past, when Burzynski had the opportunity to work with government-sponsored researchers and get on the path to get his treatment FDA-approved and covered by insurance, he aborted the study.
So instead, he just sits on what he claims is a remarkably effective cancer treatment, charging exorbitant amounts that most people have to mortgage their homes and sell everything they own to afford. In other words, he's the only guy in the world with the cure, but he doesn't want to give it away for free or share it with anyone else.
We don't know what the father of that six-year-old girl decided. Nor do we know if, in the event he opted for Burzynski's treatment, he would have even been able to afford it. But we wish we never looked at the photo of his daughter that he shared with us. It would have been much easier to not have been able to put a face to that particularly insidious brand of heartbreak.