By Keir Liddle
Edwin (Ed) Allen Gochenour was a Georgia state Senator who testified in Burzynskis defence claiming his treatment worked. 21 months later he was dead. He is just one of Burzynski’s ghosts, there are many others. The case of Ryan Werthwein is also cited as one of the clinics success stories but tragically also appears to have died after seeking treatment at the clinic. Skeptical Humanities has found several more cases like the two cited here where patients have undergone treatment believing it to be their last hope but ultimately losing their personal battles. Leaving behind family and friends at best wondering if they could or should have done more and at worst struggling with the debts that undertaking the clinics expensive treatments have incurred.
There appears to be little in the way of support for these patients despite the existence of the Burzynski patient group which appears to exist to promote Burzynski more than it does to support and help those suffering with cancer.
The Patients Group stated mission is to:
“raise public awareness of Dr. Stanislaw Burzynski’s breakthrough treatment for cancer using Antineoplastons and gene-targeted therapy. We also provide useful information and emotional support to cancer patients and their families. Our website is a place where Dr Burzynski’s patients can share their personal stories with one another and the world.”
The Burzynski Patient Group consists of
“current and former patients of the Burzynski Clinic, their families, friends, and supporters. We are a group that is filled with individuals who have the determination to fight and survive. We are bonded by our gratitude, respect, and admiration for Dr. Burzynski, The Burzynski Clinic and its staff.”
There are 45 patients with brainstem cancers on the Burzynski patient group website each giving testimony to demonstrate the effectiveness of Burzynski treatment. There is only one problem with this. Some of those sharing personal stories are dead.
The website lists five cases who have died after receiving treatment. Kyla Freitag, Lester Mouscher, Tracy Hall, Marisa Hislop and Crystin Schiff.
Kyla Freitag received treatment in 1996-97 at the clinic and initially seemed to do well. But the cancer returned and she died in November of 1999. Lester Mouscher died after undergoing antineoplasteon therapy against the advisement of his doctors. According to the Burzynski Patient Group website the families of both the deceased credit the clinics treatment with extending their life if not saving them. Tracy Hall is reported to have died due to complications arising from the radiation therapy he received in 1995. Marisa Hislop died whilst undergoing antineoplasteon therapy in 2000 from complications related to steroid use. Her family believe that the treatment was working but that she was simply not strong enough to survive long enough for them to fully beat her cancer.
Crystin Schiff underwent treatment as a child at the Burzynski clinic in 1993-1994 and her parents were informed that at the conclusion of her treatment she had gone into complete recovery. Her parents, presented with the “evidence” of ever improving MRI scans, believed her cancer was gone and stopped treatment on December 1st 1994 by December 27th 1994 her cancer had returned. The doctors advised the Schiffs that it was not Burzynski’s therapy that had saved her but rather the delayed effects of conventional therapies. The Schiffs ignored the doctors and took Crystin back to Burzynski and the clinic reported a 20% reduction in her tumour in just three weeks though despite this Crystin tragically died on the 29th July 1995. Her parents then sued her doctor for not making it known to them that antineoplasteon therapy was available, they lost the case.
A common theme running through these stories is that Burzynski did not fail to treat these cancers but that he simply ran out of time. This is a sentiment that you will find repeated time and again on the blogs and sites of patients undergoing treatment at the Burzynski clinic. The treatment is always working it is never Burzynski or his clinic that have failed rather it is conventional medicine denying the patients the treatment until it is too late that is seen as the problem. Despite an absence of published and peer reviewed evidence that supports the efficacy of Burzynskis methods.
As well as the five the group believes conventional medicine stopped Burzynski saving there are at least four testimonials supporting Burzynski on the site from patients that have since died. Eric Zielinski who appears to have died in 2003, Jane Kammet in 2008, Joshua Thompson in 2003 and Timothy Lally who died in 2005 requesting people donate to the Burzynski patient group. There is no mention of their deaths on the site, no memorial to them to be found and their stories simply tail off.
More worryingly many other members of the group appear to have no digital footprint on the internet. No blogs. No social media. No newspaper reports or notices reporting their success in beating cancer. Nothing appears forthcoming. Though I and others continue to search most often it results in a trail leading back to the Burzynski Patient Group or Marc Stephens. There seems to be no way, independent of the Burzynski patient group or it’s promotional materials, of determining whether these individuals have survived or perished.
They are in effect ghosts on the internet.
Reading the Burzynski patient group testimonials and then looking deeper into the information provided is a powerful lesson in the value of evidence over anecdote as the case of Braiden Norton highlights. It is presented as the story of another miraculous cure but in reality it appears to be anything but. Firstly, the child has a low grade Pylocyic Astrocytoma, a benign tumour that was resected as far as possible but couldn’t be removed completely due to brain stem involvement. So far, so conventional. Slow growing tumour, talk of possible chemo regimes. But then the family turned to “alternative” treatments and found themselves at the Burzynski clinic. Braiden has been on Burzynski’s treatment for 4 years and he still has a brain tumour. Far from a miracle cure it seems more likely that he has experienced nothing more than the natural progression of some of these tumours because after incomplete resection, the 10-year survival rate is as high as 45%. We wish Braiden every success against his cancer but the evidence that Burzynski has helped in any way is simply not convincing.
But as we know anecdote and personal experience are far more powerfully convincing than evidence and data and people are still swayed by organisations like the Burzynski Patient Group and “documentaries” like Burzynski: The Movie.
Hope is a powerful opiate even when it proves to be false.
However I would hope those considering undergoing Burzynski’s “natural” and “non-toxic” therapy read the case here. Where a three year old girl died from kidney failure whilst on antineoplasteon treatment (skeptics have raised fears previously that this was a potential side effect of ANP) for brain cancer. Her parents unprepared for her death because they believed she was getting better.
She may well be the first of Burzynskis ghosts where his treatment has not proven neutral and has in fact done more harm than good.
If Burzynski truly believes that his treatment works he is morally bound to research it properly and to release his results to the scrutiny of scientists, oncologists and medical professionals. Burzynski has thus far fought this battle in the court room as opposed to the lab and by doing so has either deprived thousands of cancer patients either a cure or of precious time spent with their families and loved ones at the end of their days.
The skeptics message may not be a comforting one but it is an important one. False hope is worthless.