Skeptic Activists Fighting for Burzynski’s Cancer Patients
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Article
Robert Blaskiewicz
Volume 38.2, March/April 2014
A group of skeptical activists has been aggressively investigating and challenging the false claims of the Burzynski clinic and its dubious cancer treatments, presenting reliable information about them online. They even raised funds for a legitimate research hospital.
One of the most frustrating parts of the thirty-five-year saga of Stanislaw Burzynski is the fact that while it is clear to oncologists and researchers that he has engaged in disturbing business and research practices, legal and professional actions taken to correct the situation have uniformly failed to protect patients. Furthermore, the media have almost entirely ignored the “consumer protection” angle of the Burzynski story, instead focusing largely on “human interest” stories about patients desperately raising vast sums of money on apparently unpublishable clinical trials. (For background information on Burzynski and his claims, see David H. Gorski’s article “Stanislaw Burzynski: Four Decades of an Unproven Cancer Cure” in this issue.)
While skeptics cannot perform the protective and punitive roles that regulators and courts have been unable to serve, we can step up and do the investigating, reporting, and editorializing that the media have failed to do. A concerted, sustained effort to do just that began in November 2011, after bloggers Rhys Morgan, Andy Lewis, Peter Bowditch, Popehat, and others received pseudolegal threats from the Clinic’s representative, Marc Stephens, a web reputation manager with no legal qualifications. Stephens was sacked when the international media started writing about the story, but over the past year and a half, a core group of about a dozen skeptics have put ever-increasing pressure on the Burzynski Clinic by challenging its false claims whenever they appear online and by promoting reliable information about Burzynski’s cancer treatments in ways that are search-engine savvy.1
Just as interest in the Clinic’s bullying tactics seemed to be waning, in mid-June 2012, the Burzynski affair flared up again. This time, blogger Keir Liddel noticed that a server that hosted several websites of Marc Stephens also hosted jamesrandiusa.org, a new site devoted entirely to smearing skeptics who had been critical of Burzynski (myself included) as pedophiles.2 Burzynski was on the minds of several skeptics, then, during The Amazing Meeting (TAM) 2012 skeptics’ conference that July. There we met Shane Greenup, the developer of rbutr, a browser plugin that adds a layer of meta-commentary to the Internet by linking web pages to rebuttals. I wanted to use this new tool against Burzynski’s propaganda machine.
Among Burzynski’s most fervent promoters is animator Eric Merola, who released a 2010 movie called Burzynski: Cancer is a Serious Business, a conspiracy-tinged hagiography “exposing” Big Pharma and the FDA trying to suppress a cure for cancer, tracing Burzynski’s legal battles, and exploiting patients who believe that Burzynski cured them. The film received almost no attention whatsoever before March 2011, when TV’s Dr. Oz interviewed Burzynski and Merola on his radio show and über-crank Joe Mercola promoted it on his website. From that point on, it seemed to be how most people heard of the Burzynski Clinic. When I returned from TAM, I used rbutr to link Dr. David Gorski’s in-depth review of the movie to every single copy I could find on the Internet, over one hundred of them up to this point.3
Before TAM, the skeptics who were fighting Burzynski had simply been online acquaintances, but shortly thereafter they initiated the first coordinated attempt to draw attention to Burzynski’s pseudoscience by preparing a protest at the clinic. An online group was established on Facebook to put together an effective demonstration, but because cancer patients going to the clinic had enough on their plates without being protested at, we soon decided that we’d protest the Burzynski Clinic by raising funds for St. Jude Children’s Research Hospital. We sought to raise $30,000, the cost of starting one of Burzynski’s clinical trials of antineoplastons, and we chose to do it by Dr. Burzynski’s seventieth birthday, January 23, 2013. A website, thehoustoncancerquack.com, was set up by the new Facebook group, The Skeptics for the Protection of Cancer Patients (SPCP), to serve as a hub for the protests. The SPCP compiled a suite of resources and links for people who wanted to draw attention to the skeptics’ concerns about the Clinic; these resources included guidelines written up by Tim Farley for elbowing reliable information about clinical trials into Burzynski’s Google search results.4
About two weeks before Burzynski’s birthday, writer PZ Myers announced the campaign on his blog, and the fundraising began.5 James Randi Educational Foundation staff members (especially Brian Thompson and Carrie Poppy) informally advised the campaign. Brian devoted an episode of Consequence to the issue,6 and James Randi, a cancer survivor himself, shared his experiences and spoke up about Burzynski and his ilk on an episode of The Randi Show.7 Rebecca Watson and the Skepchicks led a fundraising team with Rhys Morgan. Journalist and breast cancer patient Xeni Jardin of Boing Boing covered the fundraiser. A number of prominent skeptics, including Harriet Hall, Blake Smith, Ben Radford, and Kylie Sturgess, auctioned off skeptical swag on eBay to raise money for the effort. The Skeptics’ Guide to the Universe devoted a segment to the protest, while Richard Saunders ran promo spots for the fundraiser on The Skeptic Zone, and Kylie Sturgess’s Token Skeptic devoted an episode to the topic. Innumerable skeptics donated time, talent, and money, and on Burzynski’s birthday, they delivered to the clinic via certified mail a challenge to match their $14,700 donation to St. Jude. They also sent Burzynski a birthday card. He declined to meet the challenge.
A demonstration in support of Dr. Stanislaw Burzynski and his antineoplastons cancer treatment drug. (Jerzy Dabrowski/ZUMAPRESS.com)At about the same time, a handful of skeptics started a new website, The Other Burzynski Patient Group (TOBPG). One of the most successful recruiting tools the clinic benefits from is the constellation of former and current patients who support the Clinic. (The Clinic seems to distribute the contact information of these supporters to prospective patients.) Many of these patients are members of the Burzynski Patient Group, where these patients, most of them alive, share their stories of triumph over cancer. TOBPG, in contrast, collects the stories of the patients who did not make it. At present, they have gathered over 550 names of such deceased patients, of which approximately sixty have already been fully researched, written up, and published.8
Originally, the idea behind TOBPG was to offer balance to the overly optimistic enthusiasm of the Burzynski Patient Group; we felt it was important that desperate and vulnerable patients encounter something other than uncritical praise of Burzynski. However, the project took on an unexpected importance when a number of disturbing patterns in the patient stories started to emerge. Patients like Denise D., Kathy B., and Supatra A.’s father reported odd billing practices. A far more disturbing pattern emerged after skeptics brought the case of Amelia S. to the attention of oncologist David Gorski. The parents of Amelia, a little girl with an inoperable, almost universally fatal brain tumor, ecstatically reported online that the center of her tumor was “breaking down.” Gorski pointed out that this pattern was far more likely to indicate that the tumor was outgrowing its blood supply, not a sign that treatment was working.9 Amelia died a few weeks later.
Taken by itself, Amelia’s MRI results might have been an anomaly, a one-off misreading of a scan, but when it was put in the context of other patients’ stories, something frankly horrifying began to emerge: a pattern of patients (or their parents) reporting that signs of getting worse were symptoms of improvement, often keeping patients on Burzynski’s treatment longer than they might otherwise decide to be. In fact, out of the first sixty patients written up, no fewer than seven over a period spanning decades excitedly reported that their tumors were “breaking up in the middle,” and many more reported that they were told their worsening symptoms were signs of getting better. When one considers that skeptics have written up only a tenth of the names they have found, and that those in total represent a tiny fraction of the patients who have been treated at the Clinic mostly in the last decade, and that the Clinic has been operating for over thirty-five years, the magnitude of what that place might ultimately represent becomes clear.
At the same time that the Burzynski Birthday Bash was coming together and the websites were going up, patients who felt they had been wronged by the Clinic started reaching out to the bloggers who were writing about Burzynski. Among these patients was Wayne Merritt, one of Burzynski’s former pancreatic cancer patients, who was threatened with legal action—called repeatedly at home no less—by not-a-lawyer Marc Stephens.10 A number of these patients did not know how to seek redress or who to complain to; others simply wanted to share their stories and warn other patients. Skeptics put these patients in contact with one another, with the proper regulatory authorities, and with people who would be able to help them with legal problems stemming from their dealings with the Clinic. We’ve also reached out to patients who have expressed displeasure to let them know that they are not alone. We’ve also established good relationships with the Clinic’s former employees, upon whom we have relied for putting new information in context. Knowing that most patients who have decided to fundraise for Burzynski will be unlikely to be dissuaded from seeing him, we developed a patient protection checklist for them with tips about documenting their entire experience at the Clinic.11
This screenshot from the Burzynski Patient Group’s Facebook page shows one of the doctors at the clinic posting a patients lab results, a clear violation of HIPAA.One of the most important things skeptics have been doing has been monitoring the Clinic’s public activities on a day-to-day basis and taking appropriate action when events warrant. For instance, when one of the physicians at the Clinic appeared to post a patient’s lab results on the Burzynski Patient Group’s Facebook page, skeptics grabbed a screenshot (Figure 1) and sent it to the Texas Medical Board to be evaluated as a possible federal HIPAA violation. (Shortly thereafter the patient group blocked all non-members from its page, effectively eliminating another avenue of misinformation.) Another important action skeptics have taken is to monitor the FDA’s interactions with the Clinic and to make sure that government agencies that might not be talking to one another are alerted to developments at the Clinic. At the beginning of 2013, the FDA was on the premises for several weeks reviewing Burzynski’s clinical trials. When the FDA released the relevant Form 483s (preliminary observations to which the Clinic has a right to respond before any further action is taken), skeptics had them immediately and were horrified by what they read. The inspectors found that the Clinic’s Institutional Review Board (IRB), among other things:
• . . . used an expedited review procedure for research which did not appear in an FDA list of categories eligible for expedited review, and which had not previously been approved by the IRB.
• . . . approved the conduct of research, but did not determine that the risks to subjects were reasonable in relation to the anticipated benefits (if any) to subjects, and to the importance of the knowledge that might be expected to result.
• [And that a] list of IRB members has not been prepared and maintained, identifying members by name, earned degrees, representative capacity, and any employment or other relationship between each member and the institution.12
Skeptics forwarded all of the currently available Form 483s to the Texas Medical Board, who seems to have opened a new investigation on the basis of these observations. If and when warning letters are released, copies will be sent to the Texas Medical Board and to other professional, state, and federal authorities who might have an interest in seeing such information.
An important development came when Simon Singh contacted the BBC investigative news program Panorama and interested them in the story of the Clinic. Numerous skeptics, including Rhys Morgan, David Gorski, the blogger known as Josephine Jones, and me, were interviewed by phone in the winter and spring, and we put the producers in contact with Wayne Merritt and answered questions relating to the treatment, the patients, and the Clinic. The half-hour episode aired on June 3, 2013, and while some crucial relevant elements—such as the smears and threats leveled against the Merritts and bloggers—were left unaddressed, as well as the decades of suspicious reports from patients, there was no doubt on the show’s Twitter stream that viewers were outraged by Burzynski and the fact that he has been allowed to extract money from the dying for so long.13 Even papers in the United Kingdom that had previously advertised fundraisers to send desperate patients to Burzynski revisited the story and informed readers that the patients who they’ve sent to Burzynski feel like they were “misled.”14
Skeptics also attended every North American pre-release screening of Eric Merola’s sequel about Burzynski, where they took copious notes, usually asked challenging questions, and generally gleaned useful information not only about the movie itself but also about the perspectives and activism of Burzynski’s supporters. This allowed skeptics with more experience with Burzynski’s shenanigans to prepare rather detailed responses to the movie even before it was widely available. At one of these showings, the director mentioned that members of the Burzynski Patient Group were preparing to launch a public awareness campaign called “ANP for All.” Skeptics immediately scooped up the Facebook page and Twitter feeds, as well as the URLs ANP4all.com and ANP4all.org, effectively hobbling the launch of that misguided venture. The replacement site, iwantanp.org, is now trademarked.
The results of this ongoing, ever-intensifying skeptical campaign are not yet complete. In its first year, The Other Burzynski Patient Group has surpassed the number of stories that it took Burzynski nearly forty years to accumulate. The same bloggers and activists who have worked the Burzynski story so hard for the last year and a half have no intention of letting up, and new tales from the Clinic come to us daily.15 Last, and most crucial, the Skeptics for the Protection of Cancer Patients are using a November 15 exposé of the Burzynski Clinic on the front page of USA Today and the recently released results of an abysmal site review by the FDA (and the subsequent warning letters) as an opportunity to press Congress to investigate how Burzynski managed to secure permission for phase III clinical trials without having ever published a single phase II trial. The SPCP encourages all skeptics to visit thehoustoncancerquack.com to find out how to lobby their representatives most effectively.
Burzynski’s supporters have publicly wondered whether Burzynski should leave the United States. A recent SEC filing reported that patient visits were down in the past year, an encouraging sign, to be sure.16 Nonetheless, these efforts have not been without some consequences for the skeptics involved. Skeptics have been so effective that Eric Merola’s most recent Burzynski hagiography spends a lot of screen time demonizing critics. Burzynski’s supporters have contacted our employers, have complained to state licensing boards, and defamed a number of us publicly. We are fully aware that when the Clinic dismissed Marc Stephens that it pointedly failed to retract the possibility of lawsuits against critics, a threat that hangs over all of these activists every day. If skeptics’ concerns are founded, however, the risks to activists pale in comparison to the risks already posed to those patients on whose behalf we are working.
Notes
1. By far the most comprehensive online resource regarding Burzynski’s career and practice is maintained by the blogger known as Josephine Jones at http://bit.ly/sDYDRg.
2. Hill, Sharon. 2012. “Vicious Web Site Attacks Prominent Skeptic James Randi and Others.” Doubtfulnews.com (June12). Available at http://bit.ly/14ECsVn.
3. Greenup, Shane. 2013. “Our First Rebuttal to Reach 100 Rebuttings!” Rbutr.com (May 4). Available at http://blog.rbutr.com/2013/05/our-first-rebuttal-to-reach-100-rebuttings/.
4. These search engine optimization strategies, skeptics’ most powerful tool of combating misinformation, may be found at http://bit.ly/18NXNxJ.
5. Myers, P.Z. 2013. “Let’s Make Houston Cancer Quack Burzynski Pay!” Pharyngula (January 6). Available at http://bit.ly/UZ0XYc.
6. Thompson, Brian. 2013. “The Burzynski Clinic.” Consequence: True Stories About False Things (January 14). Available at http://bit.ly/VFVbLo.
7. “The Burzynski Clinic and Cancer Quacks.” 2013. The Randi Show. (January 11). Available at http://bit.ly/19R9Mvd.
8. Among the most revealing patient stories at theotherburzynskipatientgroup.wordpress.com are those of Amelia S. (http://bit.ly/1aVX1LI), Denise D. (http://bit.ly/12quzSf), and Chase S. (http://bit.ly/16SgNv2).
9. Orac. 2012. “More Sad News About a Burzynski Patient.” Respectful Insolence (December 12). Available at http://bit.ly/ZgXsyI.
10. “Cancer Patients Threatened.” 2012. The Other Burzynski Patient Group (June 3). Available at http://bit.ly/14aTc0Y.
11. “Advice for Burzynski Patients.” n.d. The Other Burzynski Patient Group. Available at http://bit.ly/18NIGnS.
12. “FDA Inspection (FOIA Requests, Feb 2013).” n.d. The Other Burzynski Patient Group. Available at http://bit.ly/16yFNDc.
13. “Cancer: Hope for Sale?” 2013. Panorama (June 3). Available at http://bit.ly/11ruWKJ.
14. “Amelia’s Family ‘Misled by Cancer Clinic.’”2013. Reading Post (June 5). Available at http://bit.ly/1bdQTkV.
15. I’d be remiss if I did not mention the work that the Guerilla Skeptics have done to keep the Wikipedia page about Burzynski up to date and translated into several languages.
16. This filing is publicly available at the SEC website at http://1.usa.gov/1aB1oeT.
More from this issue of Skeptical Inquirer: "Stanislaw Burzynski: Four Decades of an Unproven Cancer Cure" by David H. Gorski.
