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Folk Heroism: Lessons from USA Today’s cancer doctor investigation
December 06, 2013
Liz Szabo just did something brave. She took on a medical folk hero whose patients were certain had cured a disease other doctors had declared untreatable. She took on the FDA, too. And she waded into three decades of tangled legal history, exactly the type of document morass that can trip up lesser reporters. Her story in USA Today, Doctor accused of selling false hope to families, is one of the best medical investigations I have read. Here are a few lessons from the piece.
Choose wisely. Pick a disease and chances are that you can find someone claiming to have a “cure.” I drove past a sign the other day saying, “Cure your diabetes forever!” But how much damage are most wild claims doing? In choosing Houston-based Stanislaw Burzynski, Szabo found a doctor who was, as she wrote, “claiming to be able to do what no one else can: cure inoperable pediatric brainstem tumors.” In doing so, he gives hope to desperate people. The question is whether that hope is justified by the evidence. And that’s what makes Szabo’s story so compelling. Beyond that, what makes Burzynski more interesting than the average doctor selling unusual treatments is that he has done battle with the FDA and won. He has passionate patients on both sides – those who love him and those who despise him. One family, the parents of the Josia Cotto, watched their son die after being persuaded by Burzynski to try his cure for a $100,000 fee. Szabo wrote:
Virtually any other doctor might have recited the same sad statistics: Although doctors can now cure 83% of pediatric cancers in the U.S., there is usually no hope for kids with Josia's tumor. Perhaps 5% survive five years. Burzynski — an internist with no board certification or formal training in oncology — has said publicly that he can cure half of the estimated 200 children a year diagnosed with brainstem tumors.
Document it. In reporting this story, it was important for Szabo to show her notes because criticism of a folk hero like Burzynski will bring out the shouters and the conspiracy theorists and because Burzynski – like many physicians – has a team of lawyers and consultants ready to fire off threats. She linked to 42 documents, including legal claims, SEC documents, web pages, and financial records. Szabo also made copies of those documents from the Internet and posted them, because web pages have a way of changing when a critical story is published. By my count, Szabo wrote 179 sentences in this piece, meaning that for about every four sentences, she posted one record. She wrote:
[FDA] Inspectors charged Burzynski, as principal investigator, with a variety of other serious offenses, some dating to 2001. Among them:
• Inflating success rates in 67% of cases, by inaccurately reporting how tumors responded to treatment.
• Destroying patients' original records.
• Failing to report "unanticipated problems" to the institutional review board — sometimes for six or seven years. …
In Burzynski's defense, [his attorney Richard] Jaffe notes that inspection reports represent preliminary findings. The FDA has not yet issued final conclusions.
And Burzynski has taken issue with many of the FDA's findings.
In his written response about the FDA's claims that he inflated his success rates, Burzynski said that he "complied with all criteria for evaluation of response and made accurate assessments for tumor response."
Make it about more than the doctor. Everyone knows that doctors make mistakes; that some doctors make big claims that they can’t back up; and that medicine can’t save everyone from everything. Szabo not only zeros in on Burzynski’s methods, but also the way the FDA has handled his yet unproven cancer treatments.
Burzynski’s not hiding from regulators, either. In fact, he, with the help of his patients, persuaded regulators to make the system work for him. Szabo wrote:
In 1995, a federal grand jury indicted Burzynski on 75 felony charges, including criminal contempt, mail fraud and violations of the Food, Drug and Cosmetic Act. As a condition of his bail, a judge ordered him to stop prescribing antineoplastons. For a time, it looked as if Burzynski might never treat another patient.
Dozens of Burzynski's patients flocked to Washington to defend him, arguing that taking away antineoplastons was akin to a death sentence. Siegel, who credits Burzynski with curing her lymphoma 22 years ago, has testified on his behalf five times — once at his criminal trial and four times at hearings on Capitol Hill.
Facing both a political and public relations firestorm, the FDA in 1996 abruptly changed course. It offered to allow Burzynski to continue treating patients, but only through an official trial.
Persuade people to speak forthrightly. Finding physicians willing to criticize another physician publicly can be tough, especially when the physician in question is litigious. Szabo was able to bring plain speak to both sides of the discussion about Burzynski. Here’s one example:
"He's a snake oil salesman," says pediatric oncologist Peter Adamson, a professor of pediatrics and pharmacology at Children's Hospital of Philadelphia. "This has gone on for so many years, it's really unbelievable."
But Szabo brings in a comment from Bruzynski’s attorney, Richard Jaffe, that explains quite a bit about why Burzynski continues to practice.
"With one stroke of the pen, the FDA made legal what it had previously said was illegal," says Burzynski's attorney, Richard Jaffe.
Yet even Jaffe has acknowledged that the trial — now in its 17th year — was more about politics than science. In his 2008 memoirs, Galileo's Lawyer, Jaffe called it "a joke."
"It was all an artifice, a vehicle we and the FDA created to legally give the patients Burzynski's treatment," Jaffe said.
It’s important to note that Szabo is building on the work of many other writers over the years. This is not an exhaustive list, but if you’re very interested in the topic, you can read more by David Gorski on Science-Based Medicine and Andy Lewis at The Quackometer. You also can see how Burzynski’s supporters describe what’s going on via Erica Merola.
Have an opinion about Szabo’s piece? Send me a note at askantidote [at] gmail.com or via Twitter @wheisel.