Note: Cross-posted with Skepticality.
This is Bob Blaskiewicz from skepticalhumanities.com, but I’m going to step away from skepticism in the humanities this week to address another project that I have been increasingly involved in over the past year, the work of skeptics to raise awareness of what happens to cancer patients who end up at Stanislaw Burzynski’s Clinic in Houston. As skeptics who remember the threats issued to Rhys Morgan and others by someone hired by the clinic to do online reputation management in November 2011 know, Burzynski treats cancer patients with a form of chemotherapy he calls antineoplastons or ANP. These were originally isolated from human urine in the 1970s but are now synthesized by Burzynski in his plant. While it’s not impossible that he discovered endogenous compounds that would suppress cancer, in 35 years Burzynski has never once produced the type of evidence that could sort misdiagnoses, spontaneous remissions, and delayed responses the chemo and radiotherapy from any actual effect of the ANP, namely a controlled phase 3 clinical trial. Sure he has published case studies, case series and abstracts of poster presentations from unreviewed cancer symposia in low impact and alternative medicine journals, but never the gold standard phase 3 clinical trial.
Indeed, he has opened over 60 trials, but he’s finished only one and has published zero. This is important when you realize that Burzynski can only administer ANP to patients who have been entered into clinical trials and that, contrary to standard practice, Burzynski charges patients to enter his trials. The most recent numbers I’ve seen is that the initial consultation at the clinic costs patients $30,000 and subsequent “case management” routinely runs over $7,000 a month. Burzynski’s treatment bankrupts only the most desperate families, who often turn to the press to raise funds. I became interested and ultimately horrified when I found out that of all the patients who appeared in the press begging for money for whom I could find an outcome, all but two had died. And the ANP is really just the tip of the iceberg at this Clinic. The full range of Burzynski’s practices, including how Burzynski continues to generate revenue via genetic palm reading now that the FDA has placed a temporary hold on the ANP trials, can be seen in Orac’s very instructive series about Burzynski at Respectful Insolence.
Now, in the year and a half since Rhys and the others were threatened, skeptics have pushed very hard to raise awareness of Burzynski and put reliable information about ethical clinical trials in front of prospective patients. One of the most important outcomes of this, I think, was when Simon Singh tipped off the BBC’s investigative show Panorama to the story, who initiated an investigation. Numerous skeptics, myself included, were interviewed by phone for this documentary. So were many Burzynski’s supporters. Rhys Morgan was interviewed on camera about the threats against him. A number of cancer patients were interviewed as well. While we had originally thought that the episode was going to air around the end of April, it was finally released on June 3rd.
In some ways, it’s the best treatment of Burzynski that has been released; in other ways, the producers have inexplicably missed some of the most important stories. The first hint that this might be the case was when Rhys received a call notifying him that his interview had been dropped from the show. It didn’t fit the narrative, he was told. In some ways, that’s a type of decision I can grudgingly accept: critics being threatened is nowhere nearly as interesting as dissatisfied patients being threatened. And skeptics put Panorama in contact with pancreatic cancer patient Wayne Merritt, who was threatened by Burzynski, harassed at home no less, by the same clown who threatened Rhys. Panorama visited this family in the spring and interviewed them over 2 days at their home. Yet, inexplicably, the fact that the Clinic’s man threatened Burzynski’s Wayne and his wife Lisa Marie was not mentioned in the film!
Now there were a couple of interviews with physicians who said, basically, we have no evidence that Burzynski’s treatment works. We had a doctor at the children’s hospital in Houston who sees Burzynski’s patients when they come in suffering the powerful side effects of ANP or whose disease has progressed to the end stage. Panorama actually mentions that the Clinic has been exploiting a legal loophole in the FDA approval system, which is important. They stress that there is no good data to support the treatment. But they seem to have latched onto the human interest angle, which misses the overriding point about whether or not the treatment works. They don’t look into the quality of care that people are receiving there. For instance, they bring up the sad case of Amelia Saunders, a little girl in the UK who was on ANP for an incurable brain tumor. Following an MRI, Burzynski’s people told them that the tumor was breaking down because there were cysts in the middle of the tumor. David Gorski, who has specifically studied the growth of tumors said that this feature was far more characteristic of a tumor that had outgrown its blood supply. He pointed this out to the family, and they went to get a second opinion, and it turned out Gorski was right. The tumor was growing. Amelia eventually died. This was the first time that we had seen evidence of Burzynski letting patients believe that getting worse was a sign of getting better. And I have found that same pattern over and over and over in the online records of the patients that I and others have been researching for the last several months. Patients have unwittingly been reporting this behavior literally for decades. When you put these stories in proper context, what you see is that the betrayal of the Saunders’ trust no longer looks like an anomaly but an MO. We gave this information to Panorama. All of this research had been done and all they had to do was verify it. And they didn’t pick it up.
At the end of the show, the reporter wonders aloud, why has Burzynski has been able to sell the unproven treatment for decades? And they don’t answer it. It’s a question that should have guided the rest of the program. There’s a REAL STORY there, Panorama, one that is at the nexus of a number of crucial issues related to American health care, alternative medicine, cancer research, politics, government regulation, and law. It was handed to you, and I’m amazed that you missed it. I do think that you were wise to cut the interview with the patient who was looking to fundraise to see Burzynski. Perhaps it is my own bias, but I choose to think that was sort of judgment on your part as to whether or not the public good would be served by magnifying his plight. In closing, I understand that there was only half an hour to tell this complex, convoluted tale, but people will still be going to him after this. This is only a start.
You can read the patient stories at theotherburzynskipatientgroup.wordpress.com. Currently, those of us who are working on this story are looking for ways to amplify our signal, so if you have ideas, we’d love to hear from you. You can meet a number of people working on this important topic at the #burzynski hashtag on twitter.