Stanislaw Burzynski versus the BBC

After yesterday’s epic deconstruction of the latest propaganda-fest from everybody’s favorite Leni Riefenstahl without the talent, Eric Merola, on his most admired subject, “brave maverick doctor” Stanislaw Burzynski, I needed something science-based to cleanse the rancid taste of intelligence-insulting nonsense from my mind. Through a quirk of fate that couldn’t have worked out better if I had planned it myself, a long-expected investigation of the Burzynski Clinic by the BBC, presented on its venerable news program Panorama. It was entitled, appropriately enough, Cancer: Hope for Sale? Ever since learning that the BBC was working on this back in January or February, skeptics have been looking forward to it with a mixture of anticipation and dread, anticipation because we expected that the Panorama crew would “get it” (full disclosure: I was interviewed over the phone by a producer of the show and exchanged e-mails to answer questions), but a bit of dread because we feared the bane of all news reporting on issues of science and medicine: False balance.

So now that the report is finally out, how was it?

Although it’s better than the vast majority of reports on Burzynski that I’ve seen, I’m afraid it’s still a mixed bag. I’ll start with my general impression and then discuss some specifics that particularly stood out to me. Fortunately, there are parts of the report that hit home, and hit home hard. Unfortunately, every time I think that Panorama is going in for the kill, the reporter (Richard Bilton) seems to back off. Perhaps it’s the editing. From reports that I’ve had, the producers seemed to “get it,” but one wonders if something got watered down in the final edit. Or perhaps it’s the story structure imposed on this report, which is simultaneously a “he said, she said” portrait of a patient who believes in Burzynski and think he saved her, two Burzynski patients who died but whose families still express little or no regret over having decided to make the trip to Houston, and one patient who thinks Burzynski ripped him off. Interspersed with these stories is an overarching “where’s Waldo?” meta-story of Bilton trying to score an interview with the elusive subject of his report (which, of course, finally does happen near the end of the report), all peppered with brief interviews with experts whose comments are generally critical but often softened with caveats that turn some of the criticisms into mush.

What is simultaneously the greatest strength and greatest weakness of this episode is its relentless focus on patients. Specifically, the stories of four patients are covered: Hannah Bradley, Luna Petagine, Amelia Saunders, and Wayne Merritt. The first three patients were U.K. patients who travelled to Houston to be treated by Burzynski; Merritt lives in Georgia. This focus is a strength, because it provides an emotional hook upon which viewers can hang their attention, and, of course, the reason Stanislaw Burzynski However, it’s simultaneously a near-fatal weakness in that the obsessive focus on the patients seems to prevent the report from delving into a lot of issues that are also very important in any discussion of Stanislaw Burzynski. For instance, there is no mention of the recent FDA investigation of the Burzynski Clinic, zero mention of how Burzynski recently managed to beat an effort by the Texas Medical Board to strip him of his medical license by throwing his employed doctors under the bus, and only the most superficial treatment of how in general it is considered unethical to demand payment from patients to participate in clinical trials. No, and there isn’t any mention of how the Burzynski Clinic waged a campaign of harassment against bloggers who criticized Burzynski back in 2011. Indeed, one of the victims of that harassment, Rhys Morgan, was interviewed by the Panorama crew, but he was informed that his interview was cut from the final version because it didn’t fit the narrative. There is even at least one howler in which Bilton intones that “nobody knows exactly what’s in his treatment,” when in fact it is fairly well known what antineoplastons are and has been for at least 25 years. All you have to do is to read Saul Green’s reports on Quackwatch and in The Cancer Letter from the 1990s.

Unfortunately, the story repeatedly falls prey to that weakness and devolves into, in essence, a “he said, she said” narrative, in which one patient believes Burzynski saved her, the family of two patients who died despite Burzynski’s ministrations express no regrets, and only one of the four patients complains that he felt ripped off by Burzynski. The overall impression of Burzynski is not entirely unfavorable. Of the patients, Luna Petagine’s and Amelia Saunders’ stories are the most heart-wrenching. Indeed, Luna’s story was featured last year on a BBC documentary about the Great Ormond Street Hospital, and some excerpts from this documentary are shown to introduce Luna and her story. One of them reminded me very much of the conversation with her NHS oncologist that Laura Hymas recorded and allowed Eric Merola to include in his propaganda piece, except that in video it is so much more intense. In this scene, the oncologist tries to point out to Ms. Petagine that he doesn’t know what Burzynski is doing or how to take care of her daughter when she returns. I really felt for this oncologist, too. However, this segment on Luna also highlights another irritating aspect of this report, which hit me over the head in the very next scene, when Ms. Petagine in essence lambastes the NHS oncologists because they couldn’t save her daughter’s life, saying, “The NHS told me Luna’s going to die. This man is telling me that he thinks he can cure her.”

The report includes interviews with experts like Professor Richard Grundy of Nottingham Children’s Hospital. Grundy points out that Burzynski has not published the complete results of any of his phase II clinical trials. Right after him Professor Peter Johnson of Cancer Research U.K. discussing the importance of reproduction of results. Actually, this is one of the stronger segments in that it points out the importance of publishing scientific results in the medical literature and how that is the key to convincing other scientists of the validity of your work. That was very clear and concise. It’s also, unfortunately, simultaneously one of the weaker segments in that it ends up sounding as though there’s just no evidence and we don’t know about antineoplastons. In other words, it sounds as though they very well could work, if only the clinical trials were done. It’s a theme that is repeated throughout the report but that ignores the astounding level of sheer deception that goes on at the Burzynski Clinic, the allegations of overfilling, and how Burzynski has abused the clinical trial process to keep treating patients with antineoplastons without actually having to do the science that any other doctor would be required to do to validate a new treatment. True, not all the doctors who question Burzynski’s treatment are that wishy-washy. Dr. Elloise Garside, a research scientists, echoes a lot of the questions I have, such as how Burzynski never explains which genes are targeted by antineoplastons, what the preclinical evidence supporting their efficacy are, or what the scientific rationale is to expect that they might have antitumor activity. (Yes, we’re talking prior plausibility, baby!) This explanation was provided right after Bilton and she sat through a screening of the first Burzynski movie, which was a fairly nice touch.

None of this is to say that there weren’t aspects of the report that were very powerful and spot on. I just wish there were more of them or that more time had been allotted for them. For instance, there was the discussion of how Burzynski attracts new patients, which led to a trip to a screening of Eric Merola’s first foray into medical propaganda; i.e., his first movie in 2010 extolling the glory that to him is Stanislaw Burzynski. There’s even a sarcastic little rejoinder about how Burzynski takes his message to the movies rather than publishing in the peer-reviewed scientific literature. Particularly amusing is how Panorama includes a scene from the first Burzynski movie in which Burzynski lambastes the panel evaluating him, saying how he will get his antineoplastons approved all over the world and bring them to justice, while promising the hundreds of patients who died because of them will come back to haunt them until their deaths.

Yeah, Stan’s as warm and fuzzy as ever.

Panorama also confirms what skeptics have suspected for a long time now, namely that the Burzynski movie has been very, very effective in attracting patients to the Burzynski Clinic. During an interview with Hannah Bradley, whom we’ve met before. There’s no real evidence that Burzynski’s treatment is responsible for Bradley’s good fortune in having lived more than two years with her cancer thus far, but she attributes her survival to him. Unfortunately, she is also incorrect when she says that there’s no evidence that antineoplastons work or that they don’t work. The preponderance of evidence supports the contention that they dont’ work, but there is uncertainty, which Burzynski exploits to the max. In any case, as lovely a young woman as I think Ms. Bradley is, the whole segment is painful to watch, as she asks ignorant questions like, “What says radiotherapy works?” When the reporter points out that the peer-reviewed literature says it works, Ms. Bradley says, “But not for everyone,” which is technically true but ignores that there isn’t any evidence comparable to that for radiotherapy that antineoplastons work for anyone. As much as I like Hannah Bradley and her boyfriend Pete Cohen and hope Hannah continues to do well, I can’t let such statements go unchallenged.

Ironically, I can’t help but note that Pete Cohen also showed up on the radio to be interviewed by Victoria Derbyshire on BBC Radio 5 Live (at around the 1:44 mark). I can’t help but mention it here, because Mr. Cohen gives away several interesting tidbits. For instance, it’s very obvious that the Burzynski Clinic is in communication with him, because Mr. Cohen claims that Burzynski is preparing manuscripts for publication and that he has even submitted several to “top journals.” He even claims that Burzynski has asked that they be independently reviewed. In doing so, Cohen echoes the claims in some of the Q&A’s after screenings of Eric Merola’s most recent movie that Burzynski’s papers have been rejected without being sent out for peer review. It’s also not exactly clear what Cohen means by that. Studies submitted to journals won’t be published without going out for peer-review. Maybe he’s referring to some of the papers we’ve heard about from Mr. Cohen and others that were editorially rejected and not even sent out for peer review because the editor either didn’t think them appropriate or didn’t want to waste the reviewers’ time. Mr. Cohen also repeatedly says how he has approached experts in brain cancer and begged them to come out to the Burzynski Clinic to “see for themselves.” Seemingly, he can’t understand that it is not necessary for a scientist or doctor to meet Dr. Burzynski or visit his clinic. It means nothing. Nada. Zero. Zip. In science, all that matters is what you publish, and Burzynski hasn’t published anything other than case reports, tiny case series, and unconvincing studies, mostly (at least over the last decade or so) in crappy journals not even indexed on PubMed.

Without a doubt, the most effective part of the story is the segment in which Dr. Jeanine Graf of the Texas Children’s Hospital is introduced. Dr. Graf is the director of the pediatric intensive care unit there and has taken care of lots of Burzynski patients, as her hospital is “just down the road” from the Burzynski Clinic and these unfortunate children are brought to her hospital when they decompensate. Indeed, coupled with this segment is an interlude where Luna Petagine’s mother complains that the staff there know and recognize Burzynski patients (and, she notes, hate the Burzynski Clinic). Particularly damning is how Ms. Petagine said that the Texas Children’s Hospital Staff “were always cleaning up Burzynski’s messes.” Luna was brought to the Texas Children’s Hospital during her time in Houston, and the staff there recognized right away that she was a Burzynski patient because they had seen so many similar patients suffering the same complications before. It was also clear how much contempt the staff there had for the Burzynski Clinic. If there’s one thing Panorama did right in this report, it’s showing how seeing so many already dying children show up in our ICU because of hypernatremia due to antineoplaston therapy will do that. Perhaps the most devastating part of this segment was seeing Dr. Graf stating, point blank, that she’s never seen a Burzynski patient survive. True, she does point out that patients don’t come to her until they are in extremis, but the fact remains that she’s never seen any of them live.

It’s a sad and devastating segment.

Unfortunately, during the most critical part of the story of all, in which Bilton finally “finds Waldo” and is granted an audience with Stanislaw Burzynski, Bilton came across (to me, at least) as rather unprepared. Fortunately for Bilton, Burzynski was his own worst enemy, smirking and behaving in his usual arrogant, dismissive manner to any sort of challenge. (You can see a sample of it here, towards the end of the promo.) If Burzynski were a bit less full of himself and the greatness that he thinks he possesses, he could have wiped the floor with Bilton. As it is, the interview was pretty much a draw. Burzynski claims that antineoplastons can cure cancer, but not for everyone. Burzynski smirks when asked how many patients he’s treated and how many have survived, dodging the question by saying that the FDA won’t let him until he’s published his results. Bilton tells him that’s not true; the FDA has told him that Burzynski can tell him as long as he doesn’t promote antineoplastons. Burzynski asks Bilton why he doesn’t have a letter from the FDA. Burzynski dismisses Bilton with dismissive retorts like:

You look like a bright man but you’re asking me the same question again and again. Are you catching Alzheimer’s disease or what?

As I said, Burzynski’s arrogance, dismissiveness, and condescension make him his own worst enemy. Bilton was very, very lucky.

Burzynski also pulls out the old trope that, if the FDA has been letting him use antineoplastons for 20 years in clinical trials if they weren’t safe and potentially effective, that the FDA wouldn’t let him “sell hope without evidence.” (Those of us following Burzynski for a while know, unfortunately, that that isn’t necessarily true.) Burzynski then promises that antineoplastons will be approved “soon” (they almost certainly won’t), after which he goes on to repeat the same refrain he’s been repeating for the last decade or so about how he’s on the verge of publishing all the results that will convince everyone. “Just you wait,” Burzynski is saying, in effect, “I’ll show them. I’ll show them all!”

One notes that we’re still waiting.

Ultimately, the Burzynski Clinic did release some results, stating that 776 patients with brain tumors were treated in trials and that 15.5% have survived five years. Of course, this is an utterly meaningless factoid (if factual it even is), because we don’t know what kinds of tumors, what gradess, how they were treated beforehand, or any other confounding factors. Burzynski needs to publish, but I highly doubt that he will, at least not in a form that is informative to real oncologists.

Overall, the producers of Panorama did a decent, but flawed, job of taking on Burzynski. Part of the problem might have been that a half hour is just too short. It’s really difficult to explain 36 years of history and the ins and outs of Burzynski’s battles with the law and patients in just a half hour; so apparently Panorama didn’t even try. That left it asking the question at the beginning of how Burzynski has gotten away with this for so long but not really even trying to give an answer at the end. It also might be that expectations were too high in the skeptic community, myself included. While I can understand the decision to concentrate on patients as the center of the story, the problem with that decision is that it it’s a well-trod path that crowds out too many other important issues that ended up getting short (or, far more commonly, no) shrift in this Panorama episode. In the end, Panorama played it safe, and its report ended up being fairly unoriginal and guaranteed not to be the definitive look at Burzynski. It’s a very good thing that Panorama decided to shine a light into the recesses of the Burzynski Clinic, but at best it’s a first, flawed step. As good as much of this episode is, some of it is not, and I fear that an opportunity has been lost.