From Abracadabra to Zombies
Deception on the Burzynski Clinic Website?
The Success Story Page
29 November 2011. The Burzynski Clinic, operated by Stanislaw Rajmund Burzynski, has been offering clinical trials for an alternative cancer treatment using antineoplastons. 'Antineoplaston' is the name Burzynski gave to "a group of peptides, derivatives, and mixtures" that he uses in the trials. [Antineoplastons should not be confused with antineoplastics or anticancer drugs that prevent or inhibit the maturation and proliferation of neoplasms.] The compounds are not licensed as drugs and Burzynski is not licensed to treat cancer with his mixture. He has been doing clinical trials with his concoction since 1977. According to the Burzynski website:
Currently, there are 5 open clinical trials on Antineoplastons (as of January 2011). All of the clinical trials are registered with the FDA and result [sic] of the trials are reported to the FDA on an annual basis.
You would think that after several decades of trials, the verdict would be in. However, despite researching this type of treatment for over 35 years, Buryzinksi has not advanced beyond phase 1 and phase 2 trials.
These early phase trials test what dose of treatment people should have, how safe the treatment is, and how well it works. Early trials only give the treatment to small numbers of people. Although Dr Burzynski’s own clinic have reported positive results for these trials, no other researchers have been able to show that this type of treatment helps to treat cancer. Other researchers have criticised the way the Burzynski Clinic trials have been carried out. Despite researching this type of treatment for over 35 years, no phase 3 trials have been carried out or reported.*
Burzyniski's Clinic website page on clinical trials states that it was last updated in January 2011. The page was accessed on 4 December 2011 and there is a note that the "protocol for the Phase III trials is ready and that phase III trials are expected to start in 2011." Apparently, these trials have not begun or someone has forgotten to update the web page to let the world know how things are going. The page also notes that Phase 3 trials are done "to verify whether a new treatment is better than standard treatment" and phase 4 trials are done "to find more specific information about a new treatment that has been already approved for use in patients."
Burzynski has another website for the Burzynski Research Institute, where it states: "Research and developmental efforts are focused on cancer treatment with two pipeline drugs—antineoplastons (ANP) in one Phase III clinical trial and 5 Phase II clinical trials. Two additional Phase III trials are being discussed with the FDA." It is unclear to me whether this is saying that at least one phase 3 trial is underway. But it appears that the FDA gave approval for a phase 3 trial in January 2009.
Apparently nobody but those at his clinic can replicate his claims, so he is limited to testimonials and his own reports as his main evidence. He boasts of many successes and has a Success Story Page on his website. The first success story listed is about Tracey Edry.
Tracy was diagnosed with breast cancer in February 2005. As her life turned upside down into a series of tests, opinions, and doctors appointments, she came across the Burzynski Clinic and decided to undergo the treatment. Today, almost 3 years later, Tracey is cancer-free, a happy wife and a mom of two young boys.
I have no reason to doubt that this story is true. However, there is something left out of the story. We aren't told what kind of medical treatments she received. The same is true of the other seven stories on the Success Stories page. There is no claim that any of these patients received antineoplastons as part of a clinical trial. It is left to the reader to infer that at least some of them are alive today because of the experimental therapy. You would think that if his miracle treatment was involved, Burzynski would let the world know about it on his Success Story page. Anyway, the successful treatment of Tracey Edry may not have been due to antineoplastons. She was treated with chemotherapy and surgery. In response to my query asking her if she had also received antineoplaston therapy, she replied: "I took Dr. B's PB (sodium phenylbutyrate [Buphenyl]) treatment, which is a lower dose antineoplaston therapy than what the brain tumor patients take."
Is this deceptive? I suppose if the main reason one consults the Burzynski website is because of its reputation for treating "untreatable" cancers with an experimental drug, then one might jump to the conclusion that these success stories show that your "untreatable" cancer is treatable. The Success Story page might give you false hope.
On the other hand, if one looks closely at the Burzynski website, it is clear that the clinic offers many different kinds of treatments for cancer. Even though the Success Story page doesn't mention what treatment the successes underwent, it is unlikely that the majority of patients at the clinic are in clinical trials. The website clearly states that the clinic offers conventional therapy. So, while the success stories might have been success stories wherever the patients had gone for treatment, the Burzynski website does not claim that these patients would have died had they gone elsewhere for treatment.
Is the website deceptive? There certainly is no logical implication that the success stories listed wouldn't have been success stories at many other clinics, but there does seem to be a strong contextual implication that what makes these success stories special is the Burzynski clinic's treatment. And, the dispassionate, careful reader exploring the Burzynski website should see that these success stories may have nothing to do with the clinical trials going on at the clinic. On the other hand, if one is desperate, one might let one's emotions and hopes lead one to conclude that even though you or your child has been deemed a lost cause, there is a good chance that you might be the next success story. The real odds of being the next success story might be near zero, while the cost of the gamble might break the bank.
What is antineoplaston therapy? "Antineoplastons are chemical compounds found normally in blood and urine. They are made up of amino acids and peptides....[A]vailable scientific evidence does not support claims that antineoplaston therapy is effective in treating or preventing cancer."
The readers' editor on… kind hearts and a cruel illness "We had no intention of endorsing or otherwise the treatment that the Bainbridge family have chosen for Billie. The focus of the article was the extraordinary campaign to raise money for the course of action that the family, after careful consideration of the benefits and risks, had decided to pursue. It is a story of courage and generosity involving thousands of people. Of course, it is entirely legitimate to raise issues about the Burzynski clinic as a number of readers have done, and we should have done more to explain the controversy that it has provoked. But some participants in the debate have combined aggression, sanctimony and a disregard for the facts in a way which has predictably caused much distress to the Bainbridge family."
Stanislaw Burzynski, M.D., Facing Disciplinary Action by Stephen Barrett, M.D. "The Texas Medical Board has charged Stanislaw Burzynski, M.D. with (a) failure to meet standard of care, (b) negligence, (c) lack of diligence, (d) lack of informed consent, (e) unprofessional conduct, and (f) non-therapeutic prescribing. The charges are related to his management of two cancer patients."
Dr. Stanislaw Burzynski, antineoplastons, and the selling of an orphan drug as a cancer cure by David Gorski, M.D. It appears that during his urine and blood purification process so many decades ago, Burzynski stumbled on known compounds, PA and PAG, and has been using them to treat all sorts of cancers at extremely high doses based on weak evidence of clinical efficacy (probably brain tumours are the only real indication where it might be useful). Despite the persistent lack of evidence that these compounds have significant anticancer activity in humans, he continues to use and promote them at his clinic, charging patients through the nose to join his clinical trials rather than joining in a wider research effort test the drug in the right way....Burzynski didn’t “discover” these two chemicals. All he did was to purify them from urine, then throw them them at patients in extremely high doses. This he did for decades until, sometime in the last several years, he apparently discovered that these chemicals are metabolites of sodium phenylbutyrate; so he switched to that. Then, like the “brave maverick doctor” that he thinks himself to be, he decided that the way to sell his antineoplastons and phenylbutyrate was to “rebrand” them as part of his “personalized gene-targeted cancer therapy.”
new Another Burzynski patient dies by Orac "We can only hope that Burzynski is finally shut down in April after the Texas Medical Board hears his case again. In the meantime, remember these patients and mourn for them. They couldn't be saved from the relentless and insatiable growth and invasion of their cancers. that didn't stop Burzynski from charging huge sums of money to tell them that he could do what conventional medicine could not and save their lives." [/new]
An elderly cancer patient claims a doctor used his clinics and pharmacy to bilk her of nearly $100,000 by persuading her to undergo a proprietary cancer treatment that "was actually a clinical trial," and charging her $500 per pill for drugs she could buy elsewhere for a fraction of that price. Lola Quinlan sued Houston-based Dr. Stanislaw Burzynski and his companies, The Burzynski Clinic, the Burzynski Research Institute and Southern Family Pharmacy, in Harris County Court.