Note to PBS viewers: The work started here has continued at theotherburzynskipatientgroup.wordpress.com, where you can hear stories of patients’ hopes dashed and pockets emptied in their own words, giving you a sense of the magnitude of suffering at the Burzynski Clinic. We added 20 patients yesterday. I recommend the stories of Wayne Merritt, Denise D., Luna P., and John D.
We have hundreds of cases waiting to go up. You might also look at an oncologists’ interpretation of the evidence in the Merola film. Spoiler: he’s horrified how misleadingly these cases are presented in the film.
I’m going to put aside the conspiracy theories for a minute to talk about an issue that has suddenly gotten quite big quite on the Internet, though my interest in this topic goes back about 15 years.
Many years ago, the son of a friend was diagnosed with brain cancer. He held on for about a year and had the best treatment possible at St. Jude’s. His mom had done everything possible, but in the last stages, he was too sick to participate in an experimental trial. My friend began looking for another option. From her perspective, anything that even looked like an option was preferable to what surely awaited her.
One day, near the end, I got a call. It was my friend, and she wanted to bounce an idea off of me. She had heard about a doctor somewhere in the south who had an experimental treatment. The main ingredient? An extract of urine. I listened to her, and then I crushed her. If this guy had a cure for cancer, then he’d have multiple Nobel Prizes right now. Of course, I did not mean or even want to extinguish that last bit of hope, but the doctor forced me to. I don’t know who this doctor was, but I have never forgiven him for putting me in that position, for preying on my friend’s misery, or for trying to take away the last days she had with her son.
Her son died shortly thereafter, at home, which is something, I guess.
Stanislaw Burzynski, M.D. [for now] runs a clinic in Houston, TX. He’s been running “clinical trials” on people with extracts from urine for decades. Is this the same guy? I don’t know. I don’t care.
If you take a look at the public record, Dr. [for now] Burzynski has assembled quite a record of getting people to raise enormous amounts of money for desperate causes which usually end in failure.
- On Nov. 1, the Irish Times reported that one patient had to raise EUR 50,000. Keith Gibbons’ friends are still trying to raise money, but I’ve seen no update of his progress. [UPDATE 8/10/12: It's with a heavy heart that I report that Keith Gibbons succumbed to his tumor. My condolences go out to his loved ones.]
- On 26 June, 2011, The News of the World reported that the parents of Zoe Lehane Levarde were trying to raise 1 million for treatment at the Burzynski Clinic (1 million to get into a drug trial?). Zoe is now dead.
- On 5 June, The Sunday Express reported that Luna Petagine needed to raise $20,000 to just find out if she was eligible for the unproved treatment. [UPDATE 8/10/12: I am distressed to report that Luna has passed away. The $100,000 raised to take her to Burzynski did not help, as the treatment was suspended after a month.]
- In January of last year, an 8-year old girl from Australia, who had raised $135,000 for treatment, died, according to the West Australian.
- The Evening Standard reported on 23 July that Wayne and Zorzia intended to take their son to the Burzynski Clinic. According to the article: “The clinic says its antineoplaston therapy, which targets cancer cells without destroying normal cells, could give Fabian a 30 to 50 per cent chance of survival. But the treatment will cost £100,000 for the first year and is not eligble for NHS funding. A spokesman for Great Ormond Street Hospital said there was no medical evidence to suggest it would be more effective than chemotherapy.” The poor kid died that September, having only raised $50,000.
- In March 2005, the Montreal Gazette reported that a five-year old girl, Raphaelle Lanterne, died after her parents went against medical advice and saw Burzynski.
- In October 2003, The Gazette reported that the parents of Antonio Luk were looking for $200,000. I found that his foundation raised $30,000. Treatment was $10,000/month. Antonio died in 2004. Featured in the same article was teenager, Wesley Stefanik, another patient of Burzynski, who it seems also succumbed to his cancer.
- On 29 September 2002, the Dallas Morning News reported that Burzynski patient Christian Titera’s costs were $13,000/month. The family raised $61,000. He died in April 2003.
- On 21 April 2002, the New York Daily News reported that Taylor Mouzakes’ family was paying $10,000/month. Taylor died in 2006.
- Mirjam Binnendyk, 24, went to Burzynski’s clinic, reports the Montreal Gazette in 2001, and she was happy with the treatment at the time, though the $200,000 price tag was an out-of-pocket expense. She appears to have died in 2008, but I have not been able to pin down the year.
- Brandon Hamm, reports the Dallas Morning News on Feb 17 2002, was delivered into the care of Burzynski. It cost his family $13,425 to begin treatment. “‘I just hope this treatment at the Burzynski Clinic has him up and running in a year like the other children I read about,’ said Ms. LeJeune [Brandon's mother], referring to testimonials on the Burzynski Clinic’s website.” He died the next day, and the death was reported in the paper on the 20th.
- From the Globe and Mail, 9 March 2o00:
“Jean and Tom Walsh also found Dr. Burzynski on the Internet. Their 26-year-old daughter, Andrea, had also been diagnosed with a fast-growing brain tumour. They borrowed $16,000 to start her treatment, then borrowed more. Andrea suffered severe side-effects, including high fevers, disorientation and constant thirst. When Jean complained, the nurses told her these were signs the tumour was breaking up. A few weeks later, she was told that Andrea would soon be back to work. “I can’t tell you how happy we were,” Jean recalled. Her daughter died two days later, on the plane on her way home. That was 2½ years ago. Jean and Tom are still paying off their debts.”
- In the same article, the Globe and Mail reports that Rosmari Brezak, whose treatment was projected to cost $300,000, after five weeks in treatment at the clinic, had a massive seizure and lapsed into a coma. She died on March 9.
- The St. Petersburg Times of 3 Feb 2000 said that the husband of 29-year old Tracy Bolton was attempting to raise $10,000 to take his wife to Burzynski. When she died on the 9th, her husband was reported by the Times as saying: ”If only we had gotten the money a week sooner, we would have been out there.”
- Norma Chaimberlain of Cardiff, reported The People on 26 July 1998, was receiving £4000/month supplies of intravenous antineoplastin, and her family was tasked with raising the projected £90,000. She did not live through the year.
Need I go on? And this is the public record, people. Of the records I searched, I found one girl who seems to have beaten cancer into a 3rd remission. Almost everyone else I saw who had been touched by this guy is dead.
Now we hear that this guy’s representatives are threatening bloggers who question the unproven treatment? They started with Quackometer, who caught wind of yet another international fundraising event (I think that is how most of these cases ended up in the newspapers I researched–so many fundraisers). Andy came up with some reasonable concerns about Burzynski’s practices, and I quote at length:
- Burzynski is a ‘lone genius’. Great scientific medical cures rarely stem from single individuals. They are the result of collaboration and teams. Such breakthroughs need to be assessed by peers to ensure that the researcher is not mistaken or overstating their case.
- Burzynski is claiming he has found the ‘cause of cancer’ and his antineoplaston therapy is its cure. Cancer is a name given to many different diseases. There is not a single cause and treatments need to be targeted as specific forms. It is a common quack claim that they have found the ‘single cause’ and they have a ‘unique cure’.
- The ‘cure’ – Antineoplastons – which were extracted from urine (yes – its the piss treatment) – has no good independent peer-reviewed RCT evidence suggesting it is effective.
- Consequently, the treatment is not approved by US regulators. However, it is approved if treatment is part of a trial.
- The Burzynski clinic charges hundreds of thousands of dollars for people to enroll themselves in a trial.
- These trials of this ‘new and pioneering treatment’ have been going on for decades – since 1977. No end appears to be in sight.
- The website Quackwatch has raised concerns about the origin of Burzynski’s claimed PhD.
Someone who apparently represents this unproven piss peddler then released a barrage of positively unhinged rants and threats against not only Andy, but also his family. This bloke doesn’t seem to understand that not only do we have the right to question Burzynski’s “miraculous” treatments, but an obligation to question them.
The threats, then, are unforgivable. And skeptics have noticed, including Orac, before whose mighty word processor the very mountains tremble. (Update: Numerous lists are going up of bloggers writing about this. Here’s LizDitz’s running tally of articles.)
It’s time for Burzynski, after decades of trials, to submit his data to peer-review or to stop treating and charging patients.
Please donate to St. Jude’s, who don’t turn people away, even if they can’t pay. Unlike Burzynski, who was once found guilty of fraud.