False Hope.

Monday , 25, November 2013 Leave a comment

Last week, USA Today published a informative, persuasive and scathing report on the cancer treatment methods of Texas-based Dr. Stanislaw Burzynski.

Burzynski has claimed he is able to treat rare, even terminal, cancers at a miraculous rate, thanks to his discovery of a compound originally derived from the body’s own bodily fluids. Coined antineoplastons (ANPs), Burzynski’s treatment has languished in the experimental stage of drug-testing, with little advancement in FDA legitimacy in the thirty-plus years since its discovery.

His supporters have claimed this is the result of an elaborate conspiracy interested in silencing the Gaileo of our time from toppling the mainstream medical establishment with his revolutionary cure. As Liz Szabo dutifully reported in USA Today, the actual truth is that Burzynski is a charlatan who has skated federal regulations, violated medical ethics and manipulated the clinical trial system in order to hand out an unapproved, ineffective drug to patients at the end of their rope for decades.

The public unraveling of Stanislaw Burzynski and his cancer clinic may very well be the biggest success of the so-called skeptical movement.

Years before a major newspaper came along and made Burzynski’s bogus practices front page news, a groundswell of writers and bloggers, hailing from spheres of life as disconnected as oncology to high school student, have tried their best to expose Burzynski. (For what it’s worth, I once wrote about the death of Billie Bainbridge, a young girl with a terminal cancer who secured funding to visit the clinic in 2011)

Though controversy has surrounded the good, untrained in cancer treatment, doctor for quite some time, it’s only been in the past few years that the extent of his quackery has been laid out in such excruciating detail.

Earlier this year, Professor Bob Blaskiewicz spearheaded a project devoted to showcasing the inevitable stories of Burzynski patients who succumbed to their illness despite antineoplaston therapy and of the families who were forced to shell out ten of thousands of dollars in treatment fees to purchase the uninsured drugs. David Gorski, an oncologist and blogger for Science Based Medicine, has similarly spent novels worth of time in deciphering and debunking the claims of Burzynski and his supporters.

Though Burzynski has evaded serious personal repercussions from the likes of the Texas Medical Board, the death of Jamia Cotto while on antineoplastons, as detailed in the USA Today report, spurred a damning investigation by the FDA and led to the temporary suspension of any new clinical trials, trials which his clinic had been using to prescribe these unlicensed drugs.

That suspension came into effect last year. This is a Change.org petition started up two weeks ago and now currently featured on its home page:

We are the family of McKenzie (Lowe) — a vibrant, giving, and sweet 12-year-old girl who was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable brain tumor, on November 28, 2012. The median overall survival of children diagnosed with DIPG is approximately 9 months, making it one of the most devastating pediatric malignancies. But McKenzie still has hope in the form of Antineoplastons therapy – a treatment that could save her life if the FDA grants her compassionate use.

The Lowe family’s ordeal can be seen as early as last January, when they detailed the beginning of treatment sessions and the outpouring of community efforts to cover some of their uninsured costs to a local paper; efforts that obviously continue today as the petition – and accompanying letter to be sent to the Governor of New Hampshire – was created by the Friends of McKenzie Lowe.

Since being featured on its front page, the petition has accrued more than twenty thousand signatures, pleading the FDA to allow McKenzie to receive antineoplastons as part of their “compassionate use” exemption. The petition has received local media coverage in Boston and New Hampshire and the Boston Bruins Facebook account even decided to share it on their front page.

Practically no mention of Burzynski’s critics or the dubious nature of his treatment exist in these heartfelt pleas to find help for McKenzie. Much like they didn’t in the fundraising campaign for UK resident Billie Bainbridge. Or for medical administrative secretary Sharie M. who died in 2012. Or for State Senator Ed G. who died in 1999. All tragic stories of temporarily bought and slipping salvation.* History, as they say, has a horrible way of repeating itself.

In this instance, even that hope might be taken away before it begins. With the clinical trial suspension enacted in 2012, there is no compassionate use exemption to evoke. The most that the Burzynski Clinic is allowed to engage in now is conventional chemotherapy, which despite claims to the contrary by his supporters, Burzynski has long provided alongside his ANPs, albeit under the moniker of “personalized gene-targeted cancer treatment”. The petition is a no-starter, barring a dramatic upheaval of FDA regulations. And rightfully so.

Regardless, it’s sorrowful to see the same story play out again. A family on the brink of despair, clinging onto the last gleam of possibility. While hope is a powerful tool that inspires the best of our humanity, it’s also one that can blind people to the worst of it. Dr. Stanislaw Burzynski has knowingly banked on faith and desperation for some-thirty years and has little to show for it but unpublished, fraudulent research and penniless families. Whether he believes his own sales pitch or not, Burzynski has not found anything but a way to profit off the hopeless and compassionate.

And it’s more than a bit shameful to see that we continue to allow him to do so. While I’m not aware of Change‘s internal policy, nor would it be fair to simply remove the Lowe family’s petition, it’s maddening that no less a week after being exposed to potentially hundreds of thousands of readers as a fraud, Burzynski is once again held up as the brave cancer-curing maverick he models himself to be. The rock eternally slides back down the mountain.

And until Burzynski is stripped of his license or his treatments are permanently ended by the FDA, what else is there to do but educate others about this King Midas of empty promises? Educate and empathize with those who want to believe Burzynski’s claims.

Nothing to do but to roll that rock back up again.

*The latter two stories, along with many others, can be found on Bob Blaskiewicz’s website, The Other Burzynski Patient Group.

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