Stanislaw Burzynski and the cynical use of cancer patients as shields and weapons against the FDA

I realize that I just wrote about infamous cancer doctor Stanislaw Burzynski yesterday. (Note how I refuse to call him an “oncologist,” mainly because he isn’t one, having never completed an oncology fellowship—or even an internal medicine residency, the usual prerequisite to do an oncology fellowship.) However, there’s a bit more that I wanted to touch on before moving on to other topics. What brought this on was a Google Alert that appeared in my in box yesterday relevant to yesterday’s post. You might recall that yesterday I mentioned a campaign by the Alliance for Natural Health USA (ANH-USA) to encourage people to write to their legislators to put pressure on the FDA to allow Stanislaw Burzynski to treat patients with inoperable brain cancers on compassionate use protocols and, of course, to attack Burzynski’s critics, in particular Liz Szabo and the newspaper that published her expose of Burzynski, USA TODAY. A key aspect of this campaign by the ANH-USA was a claim that somehow the FDA had violated the privacy of one of Burzynski’s patients by providing to Szabo some of his medical records included in records of its investigation. This led ANH-USA to proclaim:

The FDA violated Burzynski patients’ privacy. “A lot of our patients were obviously very irked about the article, and called the USA Today team,” a Burzynski staff member told us. “The parents of one young patient called a USA Today reporter, who then sent the parents their own child’s confidential medical records—which the reporter had received from the FDA. The family frantically called us [the clinic], ‘I just got an email from USA Today, they sent me our son’s full medical records!’” The reporter had sent not only the son’s medical records, but those of other patients as well.

Don’t bother clicking on the link. As I mentioned in yesterday’s post, it’s dead. At the time, I wondered why. Now, thanks to my Google Alert, I know. The ANH-USA actually admitted screwing up:

In our recent article “Dying Patients Denied Access to Dr. Burzynski’s Potentially Lifesaving Treatment,” we quoted a Burzynski clinic employee who stated that the FDA shared private medical records with a USA Today reporter. We have since learned that this was not accurate.

USA Today’s reporter had previously stated, “I read about N’s case in a document that Dr. Burzynski sent to the FDA, in response to its ongoing investigation.” This seemed to confirm the allegation that the FDA had given the reporter confidential patient information. However, in response to our article, the reporter now says, “Those patient records did not come from the FDA, so there was no privacy violation on their part.” The first statement appears to have been an attempt to protect the identity of the person who did provide the confidential patient information.

My guess is that, given its previous history, the ANH-USA must have found out a doozy of a—shall we say?—inconvenient fact to have not only removed its original attack on Liz Szabo and USA TODAY but also to have admitted that it had screwed up. Anyone want to bet that it was the Burzynski Clinic that sent those records in error? It wouldn’t surprise me. Whatever the case, however those records got out of the Burzynski Clinic, this explains why the ANH-USA article is gone from its website. That might do it. Other ideas might come to your mind to explain this rather startling development.

Attacks from the ANH-USA on Szabo and Burzynski critics are understandable. That’s it’s MO, its raison d’être, if you will. It exists to promote “natural health” (whatever that means), and for whatever reason that toxic mass of chemically synthesized peptides known as antineoplastons, manufactured by brave maverick doctor Stanislaw Burzynski, has somehow become considered to be “natural healing,” rather than what it really is, chemotherapy. Again, although it’s puzzling that the ANH-USA would view chemotherapy like Burzynski’s ANPs as “natural,” it’s not at all surprising that, once having made that determination, it would attack Burzynski critics or anyone exposing the truth about what Burzynski does. Again, the ANH-USA is ideologically committed to treatments like Burzynski’s.

I can also understand why cancer patients and their families would rally around Burzynski, at least the ones who have come to believe in him. That’s even easier to understand than why the ANH-USA would rally around him. These patients and families really and truly believe that Burzynski is the only one who can save them or their loved ones. Faced with the prospect of impending death, no price is too much to pay, and no countering information can be tolerated, because the alternative if Burzynski can’t do what he claims to be able to do is too terrible to contemplate. This is why families like those of McKenzie Lowe, Refael Elisha Meir ben Devorah Cohen, and Eliza Cozad, for example, go to such lengths to raise money. Even after Szabo’s expose, these patients’s families believed. Burzynski is expensive, but who can put a price on the lives of their loved ones, even if there are critics and doubts? Before them there were many more, as I’ve documented over the last couple of years.

Szabo herself noticed this phenomenon. Indeed, there is now a two part story about her investigation of the Burzynski Clinic that is quite revealing, Q&A with Liz Szabo: Braving legal threats to investigate a medical folk hero and Q&A with Liz Szabo Part 2: Seeing the humanity in the harshest of critics. The first thing I couldn’t help but notice is this statement by Szabo:

The first was Burzynski himself. I first wrote about Burzynski very briefly in a cover story about a new book on alternative medicine, which was, as our lawyer described it, a “longish book review.” As part of my routine reporting, I emailed Burzynski for a response to the book, which was not flattering to him.

I expected Burzynski to ignore me or decline the interview. Instead, I got an 8-page response from his attorneys, warning us of the dangers of writing about their client. That was a first. I’ve never in my life gotten a legal warning about a story before I’ve even written a word. It was a red flag. Also, it was hard to believe that his lawyer could really whip up a letter like this in 24 hours. It seemed more likely that the lawyer had it on file and was perhaps in the habit of sending legal warnings to journalists. That bugged me. Whenever someone works that hard to keep a story from being published, it’s a pretty good sign that you need to write it.

Ironically, Stanislaw Burzynski and his lawyer Richard Jaffe might very well have brought Szabo’s investigation on themselves. If they had just ignored her or given a perfunctory or unenlightening response, her interest in the story might never have been piqued, and that devastating USA TODAY article might never have come to be. Worse, she discusses the families:

One couple wrote to say that they are still hoping to see Burzynski, and they’re actually petitioning the FDA to get his trials reopened. It was difficult to know what to say to them. They are undeterred by all the criticism.

She also notes that the people seeking out Burzynski and attacking her are, by and large, good people in bad situations. So even after the expose in USA TODAY, people still want to see Burzynski; they are still raising money; and, as I discussed yesterday, they’re even resurrecting an old strategy that Burzynski used the last time his back was really up against the wall in the mid-1990s. The fundraising campaigns and campaigns to lobby Congress suck in more than just those directly involved with the families and patients, too. They suck in local businessmen, who, for example, donate proceeds from their pizza restaurant to funds set up by the family of a Burzynski patient, reminiscent of the sorts of fundraising efforts inspired by patients like Hannah Bradley, Laura Hymas, Amelia Saunders, and many others.

I’ve always wondered what the source of the power of purveyors of dubious cancer treatments is. Patients and families are the source of their power, yes, but that doesn’t explain it all, because they are a relatively small number of people in the grand scheme of things. Their belief, however, is incredibly intense, and the intensity of their belief serves as the nidus of a community. That pizza shop owner in Nashua, NH believes he is doing great good by raising money for McKenzie Lowe’s campaign and by gathering signatures on petitions to the FDA and lawmakers to grant compassionate use exemption for ANPs for these patients. U.S. Sen. Kelly Ayotte (R-NH) believes she is doing good for one of her constituents by writing a letter to the FDA asking the FDA Commissioner not to “stand in the way when no other treatment options are available for an already terminally ill child.” The Jewish communities that have rallied around the plight of Raphael Elisha Meir ben Devorah Cohen to raise well over $100,000 and over 100,000 signatures on a We The People petition, enough signatures that the Obama administration will have to respond. The campaign has even gone international, with stories appearing in Israel and other Jewish communities around the world. Basically, what “brave maverick cancer doctors” like Burzynski do is to pervert the best instincts of humans, the desire to help a fellow human in distress and to build communities to do it. These communities spring up to help, and they end up becoming tools of the Burzynski advertising machine.

Aiding and abetting this is another good human trait, the desire to think the best of people, to respect others, to let them find their own way without interference. How this is used as a sword and shield, like the patients, against Burzynski critics is exemplified by a post by Randy Barnes, who argues that we should “respect” the parents of Elisha Cohen:

I am not a fan of the Burzynski Clinic, and I agree with many of the criticisms leveled at Stanislaw Burzynski and his treatments. But this is not about my opinion of the clinic. Raphael Elisha’s parents are the only ones with the right and responsibility to make the best decisions they can in a horrible situation that no one who has not faced the loss of a child can possibly understand. The Cohen family is fully aware of the controversy. They have read the articles on the clinic. However, they have also spoken to people who are convinced that Burzynski cured their cancer. As Raphael Elisha’s parents, they have decided to pursue this course of treatment if it is made available.

In the meantime, the family continues its frantic race against time as they search across the globe for other experimental medications that could be a fit for Raphael Elisha. And friends and supporters of the Cohens continue to pray, donate money, and sign the petition.

None of this, unfortunately, does Elisha any actual good with respect to his cancer. I realize that what I said can come across as harsh and that some families are likely to react very negatively to it, but it’s true. The community that has sprung up around Elisha Cohen might provide emotional support and make the family feel good, but ANPs will not help Elisha. These petitions will not help Elisha survive his cancer. The same is true of all the other cancer patients whose families are petitioning the White House, their legislators, and the FDA in Stanislaw Burzynski’s name. They will, however, help Stanislaw Burzynski in his battle against the FDA and the Texas Medical Board. Unwittingly, blinded by a noble desire not to cause the family any more pain than they are already enduring, people conflate “respecting the family’s decision” with not telling them they’re making a huge mistake, which, if they are successful, will result in their loved one undergoing a toxic therapy with no better chance of helping him than conventional treatment while, even worse, it will allow Stanislaw Burzynski to prey on cancer patients again. Desperate to help their loved ones, these families have become unwitting pawns in Burzynski’s battle with the authorities, while all the well-meaning, good people who do things like hold fundraisers in their pizza parlors to help these families have also become pawns.

Again, I realize that’s harsh, but that’s what Burzynski counts on: No matter how much his critics try to sugar coat their criticisms, they will be accused of “attacking patients.” Indeed, that’s a huge part of the entire message of the section on “The Skeptics” in Eric Merola’s second movie about Burzynski: To paint them as heartless bastards cackling over the misfortune of cancer patients seeking out Burzynski’s concoction and hoping that they die. Nothing could be further from the truth. My way of respecting the families of Burzynski patients is to assume that they will be able to handle coming across science-based analyses of Burzynski’s claims and actions in their Google searches and, yes, evenanalyses of the testimonials of patients who believe they’ve been cured by Burzynski to show that there’s no convincing evidence that Burzynski has been responsible for saving a single cancer patient. I realize that it’s probably too late for families like the ones described here. But if I prevent even a single new family from falling under Burzynski’s spell or even a single legislator from harassing the FDA on Burzynski’s behalf, I will consider my efforts to have been worth it. The real petitions and investigations that should be going on are asking our representatives and Kathleen Sebelius, Secretary of Health and Human Services, the Department in which the FDA is housed in the federal government, why the FDA has let Burzynski get away with his abuse of cancer patients and clinical trials for 37 years.