One common theme that has been revisited time and time again on this blog since its very founding is the problem of how science and medicine are reported. For example, back when I first started blogging, one thing that used to drive me absolutely bonkers was the tendency of the press to include in any story about vaccines an antivaccine activist to “tell the other side” or for “balance” to the story. So in a story on vaccines, on the one side you would have Paul Offit, a bona fide, legitimate vaccine expert, and on the other side you would have J.B. Handley, Jenny McCarthy, Andrew Wakefield, or a lesser light among the antivaccine movement. Alternatively, a reporter would do a human interest story about a family struggling with raising an autistic child and let the parents spout antivaccine misinformation, with only a brief token quote by a scientist for “balance,” thus, whether they intended it or not, letting the emotional impact of the story serve as persuasion to believe the parents’ antivaccine views. So, even though there was not (and hasn’t been at least since 2001 or probably much earlier) a legitimate scientific controversy over the question of whether vaccines cause or contribute to autism, the press aided the antivaccine movement in keeping alive the appearance of a controversy. It was, as I like to call these things, a manufactroversy, a controversy manufactured by the antivaccine movement to give the appearance of an actual scientific controversy. It’s a time-dishonored journalistic failing that is still a major problem with reporting on, for example, anthropogenic global climate change and genetically modified organisms (GMOs).
Sometimes, however, the press is teachable. A few years ago, after already having blogged about vaccines and autism for several years, I started noticing fewer stories with false “balance” and more stories that simply treated the antivaccine movement like the fringe movement it was, either not bothering to mention it or, if it had to mention it, basically letting scientists explain why it’s bad science and dangerous to public health. These days, false balance and stories that are antivaccine propaganda are relatively rare, aside from stories by fringe journalists like Sharyl Attkisson and Ben Swann. That’s a good thing. Unfortunately, I wish I could say that I really believe it was due to the efforts of skeptics and science advocates more than it was due to the discrediting of a major antivaccine figure, Andrew Wakefield, but even six years after Wakefield lost his medical license I'm not entirely sure. Be that as it may, there still remain blind spots in the press.
One of these blind spots, it would seem, is Stanislaw Burzynski. I can understand why his story might still be a blind spot. It's nowhere near as big as the whole vaccine-autism or anti-climate science manufactroversies. Being a niche story that not a lot of people know about, it's a hard one for us to educate journalists about. Be that as it may, I saw just such an example of false balance in the form of a credulous human interest story featuring Burzynski’s cancer quackery in the same way that a lot of stories about autistic children were done ten years ago. It’s a story by Bob Tedeschi and Sheila Kaplan for STAT News (usually a fairly reliable source of medical news but one that’s slipped up recently) entitled He’s 20. Has brain cancer. And is caught in the crossfire between the FDA and a renegade doctor. It’s about a very appealing and unfortunate young man named Neil Fachon:
The dizziness didn’t much worry Neil Fachon. Neither did the double vision. He was recovering from concussions he had sustained while playing sports, and the symptoms weren’t enough to keep him from his engineering classes at Northeastern University in Boston.
Then came some inexplicable struggles with handwriting and swallowing.
Doctors scheduled an MRI. On March 4, his life came unhinged.
If you’re a regular reader of this blog and have read some of my posts about Stanislaw Burzynski, you can guess what’s coming next. Fachon had a brainstem mass. It was diffuse intrinsic pontine glioma (DIPG), a form of brain cancer that’s usually inoperable when discovered because of its connection to the brainstem. Unfortunately, a diagnosis of DIPG is more or less a death sentence, although there are rare survivors, contrary to Burzynski’s claim that there are no cases of anyone surviving DIPG in the medical literature—other than some of his patients, of course.
I can only imagine what Fachon and others with the same diagnosis go through, the desperation they feel. From the comfortable “old” age that I’ve achieved, I can’t imagine what it would have been like at that age to face such a fate. I wouldn’t have graduated from college, wouldn’t have become a physician, wouldn’t have gotten married, wouldn’t have become a scientist, wouldn’t have achieved my minor notoriety as a blogger. You get the idea. I can understand why a young man of 20 would want to try anything to have a shot at all those things.
Unfortunately, so does Stanislaw Burzynski.
Burzynski’s been a fairly frequent topic on this blog ever since I really became aware of him in 2011. For details, you can learn all you need about Stanislaw Burzynski from my article in Skeptical Inquirer, Stanislaw Burzynski: Four Decades of an Unproven Cancer Cure, and Bob Blaskiewicz’s article Skeptic Activists Fighting for Burzynski’s Cancer Patients. There have also been some excellent reporting on Burzynski, including the USA TODAY feature by Liz Szabo, a segment on the long-running BBC News program Panorama, and a recent NEWSWEEK article by Tamar Wilner. Then there's The Other Burzynski Patient Group, which tells the tales of patients who died after having been taken advantage of by Burzynski. That's part of the reason that to me there's no excuse for STAT News publishing an article like the one under discussion: There's so much easily available on the web telling the ugly story of just how Burzynski has operated over the last 40 years and, in particular, since the late 1990s. A simple Google search is all it takes.
Be that as it may, the CliffsNote version of the infuriating saga of Stanislaw Burzynski is as follows. Burzynski is a Polish expat who, by the accounts we can find, was a promising medical student. In 1970, he fled to the US in order to avoid being inducted into the Polish Army as a result of his refusal to join the Communist Party. Arriving with only $20 in his pocket, he stayed with an uncle and eventually got a job doing research at the Baylor College of Medicine, where he became interested in endogenous substances that prevented cancer. During that time, he discovered what he later dubbed “antineoplastons” (ANPs) substances isolated from the blood and urine that appeared to have antitumor activity in cell culture. So far, so good. There was nothing out of the ordinary, and Burzynski seemed to be a promising medical researcher.
However, it didn’t take him long to “go rogue” and start treating cancer patients in his private clinic with ANPs beginning around 1976. Since then he’s been in near-constant battles with medical authorities as he built an empire based on treating the most hopeless cancer patients with ANPs, particularly patients with brain cancer. There were multiple attempts by the Texas Medical Board to remove his medical license. In the 1990s, Burzynski was facing prosecution for insurance fraud, but, as the result of a judge’s ruling, was allowed to continue to use ANPs as long as that use was part of an FDA-sanctioned clinical trial. So, as Burzynski’s then-lawyer Robert Jaffe put it, ““If the judge wants clinical trials, we’ll give him clinical trials.” So that’s just what they did. As further described by Jaffe:
The CAN-1 protocol had almost two hundred patients in it and there were at least a dozen different types of cancers being treated. And since all the patients were already on treatment, there could not be any possibility of meaningful data coming out of the so-called clinical trial. It was all an artifice, a vehicle we and the FDA created to legally give the patients Burzynski’s treatment. The FDA wanted all of Burzynski’s patients to be on an IND, so that’s what we did.
As a result:
CAN-1 allowed Burzynski to treat all his existing patients. That solved the patients’ problems, but not the clinic’s. A cancer clinic cannot survive on existing patients. It needs a constant flow of new patients. So in addition to getting the CAN-1 trial approved, we had to make sure Burzynski could treat new patients. Mindful that he would likely only get one chance to get them approved, Burzynski personally put together seventy-two protocols to treat every type of cancer the clinic had treated and everything Burzynski wanted to treat in the future.
That’s basically been Burzynski’s modus operandi since 1997: Enroll desperate cancer patients on his bogus clinical trials and charge them huge “management fees” without charging for the actual drug itself. Thanks to word of mouth and rumor, not to mention two deeply deceptive propaganda films disguised as documentaries by Eric Merola, Burzynski built up quite a following, with dying cancer patients from all over the world wending their way to Houston, often after having raised huge sums of money to pay for the treatment by various means, including celebrity assistance, from kind-hearted individuals. Through it all, he managed never to publish the results of any of his clinical trials until recently, and, not surprisingly, they showed deeply unimpressive results; basically there’s no good evidence, even 40 years after Burzynski started peddling ANPs, that they have significant anticancer activity. Meanwhile, patients who put their hope in Burzynski die just as surely as they would have if they hadn’t.
In the interim, Burzynski grossly abused the clinical trial process, in particular with his deeply unethical practices. Also part of his MO has been to use sympathetic cancer patients as shields whenever the Texas Medical Board, the FDA, or other governmental authorities try to shut him down, having them show up and proclaim either that Burzynski saved their lives or that they will die if Burzynski’s operation is shut down. Because, thanks to the hype and Burzynski’s blandishments, these patients really believe they will die without him, they are very, very convincing. They’re trying the same thing at Burzynski’s ongoing hearing in front of the Texas Medical Board.
It’s an effective technique, too. A few years back, when the death of a six year old child named Josiah Cotto due to severe hypernatremia (too much sodium in the blood, a common sequelae of ANP administration), led the FDA to put a partial clinical hold on Burzynski’s clinical trials, it was in part the lobbying of patients that apparently persuaded the FDA to back down and reinstate Burzynski’s trials.
It doesn't help that over the years Burzynski patients have been featured in articles like the one by Tedeschi and Kaplan that use the lazy trope of the brave patient fighting the system and doing whatever it takes to gain access to the only therapy that might save his life. (Never mind that in this case it won't.) We've been down this road before with Burzynski many times. The story usually takes a variation of the form used by Tedeschi and Kaplan: A young adult or a child is diagnosed with DIPG or some similarly deadly cancer. The patient usually (but not always) undergoes conventional therapy that, predictably, fails and ultimately finds out about Burzynski. That patient then overcomes all obstacles, be they financial, government interference, or whatever, to reach the Great Man and undergo his magical ANP therapy. In general, the main obstacle is financial, hence the stories of Burzynski patients raising hundreds of thousands of dollars to obtain ANPs. Examples include Chiane Cloete, whose family was "hoping to raise £130,000 to send her to a US clinic which could be the only chance of saving her life"; Billie Bainbridge, whose family raised hundreds of thousands of pounds and got celebrities involved to see Burzynski's care; and Rachel Mackey. All were young. All had families who managed to raise prodigious sums of money to go to the Burzynski Clinic. All died. But before they died, credulous journalists did stories very much like the STAT News story about Neil Fachon, spinning the story as a tragic but hopeful story of a brave young person battling all odds to obtain the one treatment that might save his or her life. It has become such a common trope, stretching back at least 20 years, in stories about Burzynski patients, that four years ago I referred to it as "kind-hearted strangers and the failure of medical journalism." Nor is Tedeschi and Kaplan's story about Fachon by any means the first story about a young person battling for his life but not being allowed to access ANPs because of the FDA. When the FDA placed its first partial clinical hold on Burzynski's trials in 2013, there were a spate of stories about children with brain cancer who couldn't access ANPs because of the cold-hearted FDA; e.g., Mackenzie Lowe (complete with video) and Liza Cozad.
In Fachon's case, the obstacle to be overcome is not financial, but the framing of the story is exactly the same. Thanks to the failure of the FDA and their failure to dig deeper and provide actual context, Tedeschi and Kaplan frame Fachon’s story as a battle against the FDA using the same sort of frame as advocates of “right to try” legislation do. Worse, they do exactly what reporters did with the vaccine-autism link, “balancing” the story of a very sympathetic, suffering person who believes in an unscientific treatment with the facts and science of the treatment shaded in a way to leave open the plausibility that it works. Thus, we see statements from Fachone and his family plus claims of evidence of efficacy taken at face value interspersed with statements from scientists about ethics and the lack of evidence for ANPs plus a dispassionate description of Burzynski’s battles against the FDA and Texas Medical Board.
Science and evidence never had a chance. The story is factually accurate, but the impression and message it leaves are profoundly misleading. For example:
Despite his record, the Food and Drug Administration authorized Burzynski to run a clinical trial of his treatment on a brain stem tumor. The clinical trial meant the family would not have to pay for the treatment, which can run in the tens of thousands of dollars and is not covered by insurance.
In mid-April, Neil became the one and only patient enrolled.
The Fachon family, who live in East Greenwich, R.I., had read critiques of Burzynski’s treatment on the websites of the National Cancer Institute (which says there’s no known benefit), and Memorial Sloan Kettering Cancer Center (which says it could be useful as a supplemental therapy for breast cancer). They’d read testimony, too, from Burzynki’s many impassioned, though less credentialed, fans. Neil and his sister, Evie, a senior at Northeastern, had even held a Skype conversation with a woman in Argentina who credited Burzynski with curing her fatal brain tumor.
Everyone was shocked when the FDA abruptly ordered the trial shut down, without making public the reason. The agency reversed course just as abruptly, and just as mysteriously, last week, after the Fachon family filed their lawsuit. A federal court order dated May 27 indicated that the FDA would let Neil Fachon continue his therapy.
“I can’t put into words the stress and the mental trauma that the FDA put us through,” Wendy Fachon said. “How they treated us was absolutely abysmal.”
I understand completely why Ms. Fachon might feel that way. I really do. In reality, what the FDA was doing was to try to protect her son from exploitation by a quack, a con man, to protect him from subjecting himself to risk with no potential for benefit. That’s what the FDA is there to do.
I have actually been meaning to blog about this story for a while, as I did see news reports nearly two weeks ago in which US District Court Judge John J. McConnell, Jr. ruled that the “Defendants [FDA] are restrained and enjoined from interfering with this treatment for Mr. Fachon until a full hearing on a preliminary injunction takes place. The Court finds that there is a likelihood of success on the merits because Mr. Fachon has a liberty interest in continuing to receive a drug addressing his life-threatening disease that the FDA had previously allowed him to receive.” Of course, there is no good evidence that this drug actually addresses the life-threatening disease of Neil Fachon—or anyone else, for that matter. It also strikes me as a very dangerous precedent for a federal judge to overrule an FDA decision, as such rulings are seldom made based on science.
In fairness, though, I can see one point that the judge made, namely this: The reason the FDA shut down Burzynski’s clinical trial in April 2016 was on the basis of an inspection of ANP manufacturing facilities in March 2015, a delay that Judge McConnell characterized as “extraordinarily long and unexplained.” He not unreasonably wondered why the FDA took no action during the 13-month period between the inspection and the placing of a hold on the clinical trial in which Fachon was enrolled. Personally, I, too wonder that.
As you know, in general I support the FDA. Indeed, I have on occasion written paeans to FDA heros like Frances Kelsey, who prevented the approval of thalidomide in the early 1960s. I have explained how “right to try” laws are cruel shams of placebo legislation that promise cures to terminally ill patients but deliver, in essence, nothing and are in fact an long game to gut the authority of the FDA in the name of a libertarian ideology. Indeed, given that Texas recently passed its own “right to try” legislation, I’m rather surprised that Burzynski didn’t just administer ANPs to Fachon in Houston under Texas’ new law. There was nothing to stop him. On the other hand, perhaps Burzynski was concerned that his clinical trial being under a clinical hold might have invalidated right-to-try in this case, particularly if he were to do it while his trial in front of the Texas Medical Board was still in progress.
Unfortunately, as much as I’ve defended the FDA, I can’t defend its utter failure to protect the public from Stanislaw Burzynski. It’s failed time and time and time again, and it failed yet again in this instance. It’s handling of the Stanislaw Burzynski case has been a travesty. I could (sort of) understand why the FDA backed down in the 1990s. Back then, Burzynski had powerful allies in Congress, such as Rep. Joe Barton (R-Texas), who used his powerful committee chair to torture then FDA Director David Kessler over the FDA’s treatment of Burzynski, complete with the aforementioned political theater of Burzynski patients pleading for their lives; more specifically, pleading for the FDA to let Burzynski continue.
Unfortunately, Neil Fachon’s family is cut from the same cloth. Wendy Fachon, for instance, works for a magazine called Natural Awakenings Rhode Island. I’m familiar with Natural Awakenings. We have our own version called Natural Awakenings Detroit. Basically, it’s a quack magazine. No wonder Neil Fachon was so open to the claims of Stanislaw Burzynski.
Overall, despite being factually accurate, the STAT News story gives a profoundly misleading impression, namely that there might be benefit due to ANPs and that Burzynski, despite his checkered past, should be allowed to continue. If you don’t believe me, look at the conclusion of Tedeschi and Kaplan’s article:
“Especially for kids going through this kind of thing — myself included — it’s something we need to be reminded of, because the whole situation can become so oppressive at times,” he said. “So to have that message of positivity and laughter and love for life … that’s the message I’m trying to bring to people.”
Meanwhile, Wendy Fachon said she is considering supporting legislative initiatives that might help patients in similar situations gain more control over their medical treatment. She has already heard of at least one other child who was blocked by the FDA from joining her son on Burzynski’s trial.
“My heart goes out to those families, because I know what it’s like,” she said.
As for Neil’s future, she said: “We are very optimistic for his recovery. His story can’t end now. I think his story is just beginning.”
“I’m feeling pretty good,” he said. “I don’t plan to stop feeling pretty good any time soon.”
Unfortunately, this is almost certainly not true. I realize that it's not at all unlikely that the family might see this piece, and it gives me no pleasure that they might. No doubt Burzynski supporters will label me insensitive for being blunt, but it needs to be said, because pretending that Burzynski's ANPs might be giving Fachon a fighting chance, as Tedeschi and Kaplan have done whether they realize it or not, does neither Fachon nor his family any favors. Worse, publishing an article like this potentially does other cancer patients damage by planting the idea that Burzynski might be on to something in their minds. I stand for cancer patients, and part of that stand is to provide accurate information in as empathetic a manner as I can. Unfortunately, from my perspective, cancer patients are being deceived by Burzynski advocates who cloak Burzynski’s profoundly unethical activities in the mantle of “right to try.” Neil Fachon is a victim. He’s been dealt a horrible hand. Burzynski isn’t going to make it any better. Rather, he’s using Neil Fachon, and unfortunate patients like him, as advertising fodder, in essence victimizing him a second time, after the DIPG made him a victim the first time. Basically, in structure, this story is no different than the many stories I saw a decade ago that featured for antivaccine parents who blamed their child's autism on vaccines and, based on that belief, subjected them to all manner of quack treatments based on that belief. Sure, the denials of scientists were included, but the overall impression left was of brave parents bucking the system and doing anything the thought necessary to cure their children.
In the end, especially given the way that Tedeschi and Kaplan chose to conclude their article, the overall impression left by it is that the FDA was wrong to shut down Burzynski’s clinical trial, that Fachon should be allowed the “right to try” Burzynski’s disproven—that’s right, not unproven, disproven—treatment, and that his struggle could benefit other cancer patients by forcing the FDA to let patients have more access to experimental therapies. It will not, at least not if it prolongs the farce that is the Burzynski Clinic. In fact, it would be a great thing for patients with DIPG if the Burzynski Clinic were to shut down today. Stanislaw Burzynski has had 40 years to prove that his ANPs have anticancer activity. Even given opportunity after opportunity, he’s utterly failed. Tedeschi and Kaplan should realize that, but they didn’t. After all, that wouldn’t be a very uplifting message. It would, however, save others from making the same mistake that so many others have.
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I guess it's appropriate to add this link to The Other Burzynski Patient Group (the ones Burzynski doesn't like to talk about).
And of course there is no way to leave a comment on that news article.
The journalists are on Twitter, though.
I was more thinking along the lines of perhaps linking to this blog entry on the article itself - not to "fight" with the journalist, but to warn other readers...
And sadly the follow up article on how Mr Fachon fought bravely to the end but it wasn't Burzynski's fault that he didn't survive, says the apologists, can be written now and posted when the time comes.
I hope Mr Fachon does survive but if you read the other patient group site, you don't have a warm fuzzy feeling on his behalf.
"Tedeschi and Kaplan should realize that, but they didn’t."
It can be hard to convince people when they don't want to see.
As a more cheerful (in some sense of the word) here is a link to a real doctor and his battle to treat DIPG. http://www.humansofnewyork.com/tagged/pediatric-cancer#20
The Humans of New York web site did a whole series on Pediatric Cancer at Sloan Ketterling hospital. It is a combination of heartbreak and inspiration. The site also raised something like $2 million for the hospital, with a good chunk of that earmarked for the DIPG doctor's research.
The story has gone missing from both the Globe.com front page and the "Today's paper" front page.
Justawriter @7: I read through a couple of stories on there and couldn't read any more. I was crying too much. I don't know how the medical staff at that center can cope with their jobs.
Now I just want to get within punching distance of Burzynski.
He took vitamins and high doses of curcumin, a substance in tumeric, prescribed by a woman with a degree in naturopathic medicine who studied with Cherokee elders.
Is there no kind of scam that Tedeschi and Sheila Kaplan won't pimp? Their fact-checking does not even go as far as looking up how to spell "turmeric".
Slightly OT: I keep a picture of Frances Kelsey pinned to my cube wall. Partly to remind myself to do the right thing for patients and take a stand against bad science. But also because I read an article that said if you keep a "moral, spiritual or religious object" at your desk you boss is less likely to ask you to do something unethical. (Sadly I had to add a caption to the picture because no one knew who Kelsey was.)
Burzynskis' lies are like a bad Shaker lemon pie. It smells wonderful, but every bite is more bitter than the last.
Yep, I can certainly vouch for @BySheilaKaplan being a thin-skinned hack who doesn't even understand what "false balance" means. The Boston Globe clearly doesn't make 'em like it used to. What a shame Cardinal Law didn't think to Tweet sternly at them back in 2002: they'd have run right away. #StatNews #MedicalFraudEnablers #ForShame
Does it make me a particularly bad person to say I really don't give a crap if he doesn't? Dude is almost certainly screwed by his cancer, which is tragic for him and his family, and definitely screwed by his decision on how to treat it.
But once you go beyond lying to yourself to lying to other people as well, my sympathy evaporates. You choose to throw your lot in with religion over evidence, that's your funeral, but don't you dare drag others down with you as well. And there's a billion people on the planet who don't know where their next meal is coming from and another billion who ain't sure about the meal after that, so as far as I'm concerned you should just hurry up and get out of the way and hopefully someone more deserving might have the chance to take your place.
(And if that does seem harsh, mind that it's nothing I don't already say to myself every day. Perhaps if others had spoken bluntly and unforgivingly to me back when I was destroying my own life for the second time through exactly the same willfull self-delusion as the first, it might have saved not just me but more importantly everyone around me a load of extra pain and heartache.)
has, I agree with you because Mr. Fachon is an adult. I would have a different opinion in the case of a child; my opinion of the parents would be a different story.
The biggest issue is if Mr. Fachon survives or survives for a period longer than normal. Mr. Fachon survival would provide Quack B. a certain false validation.
Indeed. The problem isn't so much survivor bias but that everyone's too piss scared to call survivors on it. Which is understandable, but also unforgivable: all such cowardice does is make more non-survivors in future. People don't want to say anything because they don't want to be cruel, but honestly what is crueler than that?
a story by Bob Tedeschi and Sheila Kaplan for STAT News
One recurring theme in the story is the essential role of positivity. Tedeschi and Kaplan appear to have swallowed the positive-thinking-is-crucial line of bafflegab (fighting spirit! Those who die, should have tried harder!)
Coyne and Tennen:
Of note: I had a couple of additional thoughts of how Tedeschi and Kaplan's story follows the familiar script of stories about Burzynski patients; so I added a couple of paragraphs expounding on that in the middle of the post.
Mrs. Grimble #9 - I had the exact same experience. So sad. So angry.
A 'false balance' critique based on the fact 'both sides' are presented does not apply to this type of article. This is not a 'human interest' story. It's a sub-genre of what journalists call 'depth stories', with conventions similar to a certain type of documentary film. Unlike standard news, it's a dramatic narrative in form, presenting and contextualizing the factual details of one case that serves as a paradigm of some larger topic of 'controversy'. It's the sort of reporting NPR uses regularly to cover social issues, and overall, Tedeschi and Kaplan do it pretty well. This genre of reporting maintains an overall objective stance, so it actually functions to some extent as 'we report, you decide'. The 'balance' in them is 'organic': in that it comes out of the dramatis personae in the story. Any spin representing what the authors think is very subtle, and will disappear into most readers' confirmation biases. In this case, the broader issue is the debate over "right to try". It's presented from the POV of the desperate patient with an terminal diagnosis, offered as a paradigm case of the terms of the controversy. Thus, the authors begin with the optimism of the Fachons, in the terms those folks use. Which is then countered with the judgement of the FDA, presented in the terms that agency uses. Where the subtle 'spin' comes is in how the narrative arc is constructed.
The story is not about Burzynski, it's about Neil Fachon. He's the sort of patient who presents a 'best case' for right-to-try. He's young, vital and doomed in terms of current standard of care. His position on right-to-try is represented by the first big pull quote from his mom: “Neil wanted to be part of this research. What did he have to lose — his life?” Given the framing of Neil as the subject, it's hard to find fault with the implicit argument. At least, at that point... But that's just Act 1.
In choosing to tell the story of Neil Fachon, Tedeschi and Kaplan are starting with a frame inherently 'unbalanced' toward right-to-try. However, there's no dramatic conflict in that, and that's introduced here through what I call 'the hook structure'... after establishing audience sympathy with one perspective, the storyteller turns the tables on the audience with a reversal: a contradictory rebutting POV that turns out to be at least equally credible if not (usually) more credible
Everything in storytelling involves a host of choices. Any sort of story could be told in many way at different points, and one way to uncover the meaning of stories is to consider what choices that were readily available were NOT made. The key choice here is that in dramatizing right-to-try, Tedeschi and Kaplan chose to focus on a sympathetic kid getting treatment from Stan Burzynski because Burzynski is a disreputable scamming quack. They could have dug up an equally sympathetic patient facing regulatory obstacles in pursuing right-to-try with some far more legit might-actually-work treatment – a 'real' clinical trial from researchers and/or pharmaceutical companies with track records of at least some success. If they were 'in the bag' in support of right-to-try, that's what they would have done. Instead, if only to maximize the drama, they chose the sketchiest 'clinical trial' scam they could find. They chose for their story a case where Mrs. Fachon's position has the sharpest 'organic' counter possible.
The drama, then, is defined by comparing that first big pull quote with the second big pull quote from the FDA that answers it. "Dr. Stanislaw Burzynski has 'failed to protect the rights, safety and welfare of subjects' under his care in clinical trials." Again, look at the choice. Of the many negative things the authorities have said about Burzinski, they pass on his treatment's uselessness – who cares, if the kid is going to die anyway? It wouldn 't rebut the family's perspective. But failing to protect patients under his care? Boom.
The story then returns us to Neil Fachon's optimism with the knowledge it is most likely tragically unwarranted. We learn about his mom's beliefs in naturopathic remedies, which helps explain why the family has fallen for woo. We learn Neil is trying to maintain a brave optimistic face for the sake of other people, regardless of what fate has in store for him, which helps explain the family's blinders to reality. To any reader who does not have a woo-ish interpretive bias, the ending – with Neil's upbeat “I don’t plan to stop feeling pretty good any time soon" statement – will be shaded with sad irony.
I completely disagree. The impression I get from the article is that Fachon's efforts will lead more cancer patients to be prey for medical scams. Sure, if you reprint this at NN or some similar source, those readers will likely see the 'message' that worries Orac. But it's not in NN, it's in STAT. For an audience of medical professionals who may not be as familiar as Orac with how cancer scammers appeal to afflicted patients, the article provides a useful example of how patients like Fachon may view their situation and give undue credit to quacks. Only by taking Fachon's POV could the authors make that seem real and relatable. The piece also shows those who may encounter folks like the Fachon family that simply debunking the treatment claims may not dissuade them from their rose-colored-glasses view of quack promises.
For a piece like this, 'what does is mean?' may be less pertinent than 'what can/should we do with it?' Meaning is not only contextual, but contexts of reception change over time. By taking the STAT article as a jumping off point for publicly engaging right-to-try via the story of Neil Fachon, sbm-advocates can change the context away from one that might encourage the FDA to allow more access to bad trials to just the opposite.
I take the subtext of the article as being critical of the FDA on three points:
1) Bureaucratic insensitivity toward the Fachons "when the FDA abruptly ordered the trial shut down, without making public the reason."
2) Cowardice in failing to protect Fachon (and by extention other victims of quackery) by an apparently politically motivated decision to reverse course and allow the treatments in the face of the family's lawsuit.
3) Lack of transparency, and more crucially a failure of responsibility to inform the public about the nature of Burzynski's 'research'.
Tedeschi and Kaplan tell us Neil Fachon's 'clinical trial' was approved by the FDA "despite [Burzynski's] record" of bad behavior, including "repeatedly jeopardizing his patients with risky treatments and drug overdoses." They tell us that in 2013, the FDA again concluded Burzynski “failed to protect the rights, safety and welfare" of the participants in his trials. They don't come right out and say the recent reversal giving Neil's treatment the go-ahead stinks of CYA on the original approval, but they shouldn't have to. They're handing out a platter of fuel to light a fire of embarrassment under the FDA for not being tough enough on Burzynski.
And Orac's mad at them? They're reporters, not pundits. Scourging Burzynski and/or the FDA's lax attitude toward him isn't their job, and it wouldn't work out well if they tried to take it on. It's up to all of us to define what the Fachon story means going forward.
For example, while I'll agree the article would have been better if it had referenced some of the negative reports from Burzinski patients collected on the site Hellanthus linked, there's nothing keeping us from using the timeliness of the STAT publication to direct attention to that material.
Physicians might even take some of those statements, combine them with the STAT article and add a framing intro and conclusion to create an educational packet for cancer patients and their families on the dangerous allure of quack promises. I hate to say this, but one way the context of reception of the Neil Fachon story is likely to change is that Burzynski's miracle cure is unlikely to produce miracles, making the irony that ends Tedeschi and Kaplan's tale all the more cautionary...
A better way to counteract Burzynski is to criticize his papers, like this guy has done:
You mean like this about the same study?
Straw man. I'm not asking them to do either thing, although the FDA's handling of the Burzynski affair would be an awesome story if some reporter could take it on successfully. I've actually discussed this very issue with a couple of reporters who wanted to find out why the FDA keeps approving Burzynski's clinical trials, but they've run into a brick wall of bureaucracy, and thus far no one's succeeded. FOIA doesn't help either because FOIA protects "proprietary" information from disclosure, and until a drug is approved by the FDA the information submitted by an applicant for FDA approval is considered proprietary.
In any case, my objections are not that the reporters didn't turn their article into a jeremiad against Burzynski or the FDA of the sort that I routinely write on the topic, but rather that they did churn out a lazy narrative that I've seen at least a dozen times over the last five years from multiple countries (although mostly from the UK) in which Burzynski patients overcome all odds to make their way to his antineoplastons and Burzynski is portrayed as a "brave maverick doctor." It's a narrative that is by far the preferred narrative about any Burzynski patient, probably because it's much more "positive" and "uplifting" than a narrative in which a dying cancer patient is taken advantage of by a quack.
Nor is Tedeschi and Kaplan's story about Fachon by any means the first story about a young person battling for his life but not being allowed to access ANPs because of the FDA. When the FDA placed its first partial clinical hold on Burzynski's trials in 2013, there were a spate of stories about children with brain cancer who couldn't access ANPs because of the cold-hearted FDA; e.g., Mackenzie Lowe (complete with video) and Liza Cozad. I wrote about Mackenzie Lowe and Liza Cozad at the time. Just search.
Indeed, the way the investigations by the FDA were reported are no different from any number of stories that I've seen, only now up to date, and serve far more to push the narrative that Burzynski is a "maverick" and "They" don't like him and want to shut him down, than a narrative that what he is pushing is dangerous quackery.
These stories are part of the reason the Burzynski myth persists.
Yes, you did a very good job on this one. Why don't you put your comments on PubMed Commons?
Hmmm. I just noticed that she blocked me on Twitter. After one Tweet responding to her with a link to this post. Not promising.
Orac@22: This. The press would never pursue this type of narrative for blue-collar fraud. That dodgy white van man who parks up outside your nan's house one day and kindly tells her she's some shingles loose, and he'll be happy to fix them for a few quid. It doesn't matter how much your nan liked that nice young man and praises his lovely manners and how helpful he was in driving her down to the cashpoint, and how generous he was to offer to fix the rest of the roof and the driveway and the windows and will be back to fill in all the gaping holes any day now: the press will publicly flay him to death for what he's done and is still doing, even before the law has gotten its shoes on.
So how the hell is there one press narrative for sub-working class fraud that leaves your nan broke and homeless, yet another completely different one for white-collar middle class fraud that leaves children dead after the most miserable last months of existence and their parents and family and friends in massive debt and unrelenting pain? Simplest answer? Tedeschi and Kaplan and their editors and employers are hypocrites as well as incompetents. It's not that they're selling Fachon down the river - he's already doomed by his own free will - but that they're actively recruiting the next generation of victims for Burzynski and all the other scum quacks just because telling people what they want to hear is now valued more than telling them what they need to hear, and thus is an easier sell.
It's like (as I said to Brave Sir @BySheilaKaplan right before she told me I needed to try harder to be funny and blocked us) saying that: okay, so some Catholic priests in Boston fiddled kids, but look at all the good in the community they do too. It was that very attitude that allowed that whole Boston - US - global pedophile priest merry-go-round - which was already known about in the 70s - to persist several decades more, because nobody wanted to speak up and say what needed to be said, because nobody wanted to upset people's most precious and deeply held beliefs. Yet by choosing to hold their tongues, they damned thousands - hell, probably hundreds of thousands - more kids to that abuse. Or the BBC and Sir Jimmy Saville? Same thing. The list goes on. And on. And on. And on.
Yeah, everybody's guilty and complicit on some level, but not everyone elected themselves harbringers of truth only to welch on the deal through ignorance, vanity, or cowardice. As in Medicine, if you want to be Press, you should hold yourselves to even higher standards or else GTFO before you hurt someone.
"Silence in the face of evil is itself evil: God will not hold us guiltless." But apparently the Boston Globe now will. How far our free press has fallen, and so fast.
I have been pretty disappointed in STAT recently, too, which is a shame. They got off to such a good start. It seems they have fallen prey to the same 'clicks over solid content' thing that ruins so many good online journalism efforts. Still, there a lot of good writers and good stories on STAT, but the reaction of a supposed scientific journalist to legitimate criticism of the testimonial tone of her article pretty much tells you everything you need to know about how much they value credible content. I am, of course, assuming that their goal is to provide credible, evidence-based info, which may be a false assumption. I also think it's odd that they don't allow comments. I get that comments sections are the devil's playground, but purposely exempting yourself from the very sort of immediate feedback that might improve quality is suspect.
Orac@24: Perhaps my doing, for using "Reply All", as it were? She blocked me after three, after telling me I was 1. being rude and 2. needed to try harder at being funny. (You can form your own opinions from the half of the exchange that's still visible.) Perhaps she blocked you and @ABatemanHouse at the same time just to be safe? Hey, you've heard one Big Pharma Shill, you've heard them all; after all, we're all Bonnie Offit.
FWIW I tweeted links to your article and the Other Burzynksi Group to @bobtedeschi and @statnews, and was neither blocked nor replied to there. I see others are taking him to task and I see he's also playing the "It's not journalism to take sides" card, which I'm sure would come as a huge surprise to Bob Woodward and Carl Bernstein, Robby Robinson &co, and other hacks who actually do the job, dig the dirt, and explain exactly where it leads no matter how foul, eternal empires and eggshell egos be damned.
These two preening Polly Fillers wouldn't last two seconds in a real science knife fight. They should run, not walk, to vacuous lifestyle columns where I'm sure they'll fit right in and the amount of harm they can do is hopefully a bit more limited.
(obligatory palate cleanser)
a lazy narrative that I’ve seen at least a dozen times over the last five years from multiple countries (although mostly from the UK) in which Burzynski patients overcome all odds to make their way to his antineoplastons and Burzynski is portrayed as a “brave maverick doctor.”
Andy Lewis @ Quackometer:
I've posted this a lot on American websites. Some people may not have seen it yet. False balance.
Hell, I'm trying to score a gig by savaging this item that was belched up by the employer. ("Lively language," I've heard, is a positive feature of cover letters.)
Yes, this guy (PDF).
savaging this item
How much would be left after taking out the neurobollocks?
I've got a lot else to pack into one accessibly intriguing page. I might even have to ditch the footnote to David Dodd, which would put me back to square 1 while time's a-wastin'.
You probably already know about the Dartmouth salmon fMRI study, but in case not:
ORAC, I can understand your criticism (sometimes)of certain unproven treatments,but what I cannot fathom is your unwillingness to share the same outrage at pharma co's & the FDA,who do the exact same thing as you accuse Burzynski of.
Haven't pharma co's sold drugs that don't work ?
Haven't pharma co's sold drugs that do harm ?
Didn't these drugs go through extensive trials ?
The only question I would really like you to answer ORAC
is what treatment would you seek out, if conventional treatment for,let's say,an aggressive form of brain tumour had failed you ?
It's Human nature to try anything we can to survive,isn't it ?
Look ORAC, it's obvious that you & your loyal band of yes men & women are very smart,but the arrogance that comes from you all is quite surprising,considering the absolute failings of medical science in its "war on cancer".
I can't imagine the amount of money spent worldwide, on finding a cure for cancer in the last 50 years.
The system you work in is corrupt,broken and even if you can't see it,not interested in a cure.
As I said,you white coats are smart,but there has always been two kinds of smart.
Book & Street.
You obviously have no problem navigating your way through a library
But you wouldn't last 2 minutes on the street.
Because your first instinct isn't to question the motives of those entrenched in positions of authority & power.
Thinking that pharma co's really do want, more than anything,a cure for cancer.
Health care costs in US alone I read,would be the 7th biggest economy in the world if it were a country.
No, the cancer industry is to big for a cure now.
The people in the street know it.
What about those in the libraries?
@K: The answers to your questions;
Haven’t pharma co’s sold drugs that don’t work ? No, not since the FDA has required clinical trials.
Haven’t pharma co’s sold drugs that do harm ? Yes, but those drugs get pulled off the market as soon as the harm is identified. OR the public is notified so they can make the decision, with their doctor, whether the potential harm is worth it. SB claims his drug is "natural" and "harmless". He also prescibes chemotherapy - which he requires the poor suckers to purchase from HIM at inflated prices.
Didn’t these drugs go through extensive trials ? No. There have been NO good clinical trials of the drugs. As you would know, if you'd done any research on them. Burzynski has not published any results, has not allowed others to perform clinical trials, and has modified or destroyed medical records that contradict his word.
Oddly enough, my friend was treated for childhood leukemia some 24 years ago, with pharma drugs.
Even more bizarre is, if it is like you say and "the street" knows those drugs weren't meant to cure, she remains cancer free today still....
And the strangest of all, she's not the only one. Nor is leukemia the only cancer with which this happens...
@K you need to get your information from better sources for in the UK alone cancer survival rates have doubled in the last 40 years. Admittedly, some of the more aggressive cancers, like the pancreas, have seen only marginal improvements. But some, like the testes and malignant melanoma now see survival rates climb to over 90% and 85% respectively over the last forty years. Overall, taking all cancers into account, over 50% now survive it in the UK and some European countries have even higher survival numbers. For a corrupt system dealing with a whole hosts of different cancers, while there is always room for improvement, as any cancer specialist will be the first to tell you, they don't seem to be that corrupt to me, unlike the crooked monster that is Stanislaw Burzynski.
"As I said,you white coats are smart,but there has always been two kinds of smart.
Book & Street."
Those who are street smart do not fall for "cancer cure" cons.
@ DB, the irony of that last sentence of K's in a thread about Stanislaw Burzynskis boggles the mind. I get the feeling that they are barely self aware.
The existence and success of curative Hep C drugs like Harvoni suggest that there is good money in cures. Why would cancer be any different?
K: "It’s Human nature to try anything we can to survive,isn’t it ?"
And it is the Con Man's nature to take advantage of those who are vulnerable. Lots of families have suffered by losing lots of money and their sick child because they believed Burzynski had the answer. He did not, he just had a way to get cash from their misery.
"What about those in the libraries?
Perhaps you should try going to your local library. Go to it, get a library card and then check out the following two books:
The Confidence Game: Why We Fall for It . . . Every Time by Maria Konnikova
The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee
Yes, pharma's have sometimes not just sold, but actively promoted drugs that do harm. However, these meds did not always get approved due to honest extensive trials simply getting it wrong, as sometimes happens with even the best science. Some of these approvals came after weak or corrupted trails, influenced by political pressure or profit motives. This hardly damns the system as a whole, since pretty much every large field of human endeavor has a few bad actors gaming the rules. The existence of a few bad apples doesn't mean apples are bad sui generis.
If the FDA was NOT interested in a cure for cancer, it never would have approved Burzynski's trials scams in the first place.
Even if pharmas DID 'do the exact same thing as Burzynski' these sins would be aberrations that occur only infrequently, while in Stan's case that's all he does.
The notion that pharma's don't want to find a cure for cancer because that would upend the huge profits they make on treating cancer is not only inconsistent with the facts (cancer treatments aren't where the pharma's make the big $$), it vastly underestimates the pharma's ability to 'monetize' their products. A real cancer cure would indeed make the owners of the firm that developed it very, VERY wealthy.
The idea that 50 years of well-funded research would have yielded a cure if done on the up and up betrays (oddly?) too much faith in the power of science to solve any sort of problem. This magic-power-of-science belief is what sociologists of science refer to as 'scientism', and actual working scientists know better. They know that some of the problems they work on might not ever be solved.
Cancer is such a psychologically devastating disease for families and friends of the afflicted that cancer research is very well funded through an assortment of non-profit charities. The pharma's aren't in a position to deflect this research off track even if they wanted too, which they don't. If you want a broad-scale profit motive, here it is: the pharmas could give away a cancer cure for free because they'd make massive bank on the treatments for routine chronic maladies the cancer survivors will experience by staying alive – more sales for antipsychotics, BP meds, cholesteral meds, asthma meds, and acid pump inhibitors, which is where the big profits lie.
Also, cancer is not one disease. It is hundreds. Even breast cancer has at least four major subtypes based on molecular profiling, and those subtypes can be further subdivided, and the systemic treatment is different for the major subtypes. Worse, cancer can rapidly mutate to evolve resistance. That's why we are unlikely ever to conquer cancer completely. We cure some cancers now and will figure out how to cure more in the future, but we will never cure "cancer."
That's the reason why I despise the term "cancer moonshot." When Kennedy promised to land a man on the moon within ten years, as crazy as it sounded then, the task was much more straightforward than curing cancer. Back then the science existed to do it; getting to the moon was therefore more of an engineering problem than anything else, a problem that did not require breakthrough scientific discoveries. Curing cancers will require much deeper scientific understanding.
Re the 'moonshot approach' to cancer.
I heard an interesting talk* last week entitled "Why we can't go to Mars," by Stephen Fleming.** Part of his discussion focused on how detrimental JFK's challenge was to the development of the space program. Instead of a broad-based approach, building the foundations for a long-lasting space exploration effort, we American taxpayers funded a narrowly targeted, testosterone-fueled, military-focused effort toward a milestone. Once that milestone was reached it was easy to put up our 'Mission Accomplished' sign and turn our attention elsewhere.
Another major barrier is the US Senate. The USA has an unmatched expertise in space construction. No other nation can build things in orbit with anything near the efficiency of the US. However, in it's infinite wisdom the US Senate has decided that any craft used for exploring the moon, Mars or any other extraterrestrial location must be launched as a single payload with a booster provided by a manufacturer located in the state of Utah.***
Just think of the opportunities for directing funds to politically-favored providers in a cancer moonshot scenario.
* Page down for the audio plus slides of the original version of this talk:
** Mr Flemings CV, written before he left Georgia Tech: http://c.ymcdn.com/sites/www.sbia.org/resource/resmgr/vci/stephen_flemi…
*** I wish I were kidding.
With the GOP in control of the Senate, and Jason Chafetz chairing the Committee for Mud Slinging and Reputation Destruction, the funds for a cancer moonshot would probably go to Utah as well. Supplements, baby!
I wish I was just kidding, too.
Sometimes I think it's a good thing that all the researchers over at the cancer research center next door are too busy working to read comments like K's, because there's nothing quite like busting your tail for your whole career, and finding all kinds of new understandings and new treatments only to be told that you have actually accomplished nothing because you haven't managed to stand on the sun.
Cancer treatments (s! plural!) have come a heck of a long way in the past 50 years, and anyone who disputes that is ignorant.
From a brief look around, Fleming is not exactly a disinterested observer. I sorely doubt that the legislation itself specifies ATK. (What was the J-2X doing in development?)
Did he use the phrase "Senate Launch System"? Space tourism ain't going to send no steamboats to Mars.
Narad @ #48: " I sorely doubt that the legislation itself specifies ATK."
So would I. However I spent a career in government, much of it involving federal legislation. I would fully expect to find some virtually impenetrable language, tucked into an innocuous, unrelated piece of legislation, written by a lawyer for ATK, which rules out use of any SRB made outside of Utah and provides that ALL launches utilize SRBs.
The phrase "Senate Launch System" is shorthand for political interference in science decisions, usually to make sure that funds are spent in the proper district/state. The fact that NASA headquarters is in Houston has nothing whatsoever to do with weather, location or any other rational factor. It was politics, pure and simple.
The last two paragraphs are my response.
Apart from calling Dr Burzynski a quack , Orac does not make many other significant points or debate any factual information about Burzynski's issue. Burzynski is a quack, because he is a quack and therefore he is a quack is not very convincing. Several issues for clarification I raised below.
Issue 1: The Burzynski 2016 movie ( watch on youtube from 1:12:20 ) discusses the patent application by the US Department of Health and Elan Pharmaceuticals for the antineoplastons (Burzynski's technology). That patent application (apart from being an attempt to hijack Burzynski's invention by an ex-employee as alleged by the movie) contains the following statement. ..."Current approaches to combat cancer rely primarily on the use of chemicals and radiation, which are themselves carcinogenic and may promote recurrences and the development of the metastatic disease ..." . This is a profound information. Question : is that statement made by the US Department of Health correct ? if yes, do oncologists (including Orac) inform patients prior to treatment that chemo and radiation which they going to receive may promote the recurrence and spread of cancer ?
Issue 2 : The "Burzynski" 2016 movie (watch from 0:59:00 to 1:06:40) discusses the phase II trail of the Burzynski's antineoplastons by the National Cancer Institute. The trial was not successful and was eventually interrupted by NCA.
The NCA significantly altered Burzynski's protocol against Burzynski's advice and intentionally administered significantly lower doses of antineoplastons during the trial. Question : 1. Why do you think would NCA alter the protocol and refuse to share the patient's records with Burzynski, who after all provided technology and had the best clinical experience in the use of antineoplastons ? is such behaviour ethical since it can put in danger patients who participate in the trial ?
2. Why the US Department of Health together with Elan Pharmaceuticals lodged the patent applications for antineoplastons, if there was no evidence of their potential effectiveness?