As Stanislaw Burzynski stands in front of the Texas Medical Board to answer for yet another litany of abominations, patients are no doubt planning to protest in front of the courthouse so they can beg for their lives. Many of his supporters in the past have been then-current patients who were convinced that Burzynski was their only chance at life. Burzynski’s patients often have dismal prognoses and their prospects do not improve when they buy into his medical adventurism. In anticipation of such patients being used as human shields yet again, we are focusing on stories of people who have testified on Burzynski’s behalf, begged for their lives in courts and in the public, but who of course died anyway. These patients, so far, include Burzynski patient Elke B., Burzynski patient Douglas W.,Burzynski patient Janet C., Burzynski patient Sen. Ed G., and McKenzie L. These patients may not be testifying in the upcoming trial, but their stories are perhaps the most important and are far more eloquent and revealing.
Alice C.’s story begins in August 1994, when after 2 years of a steadily growing lymph gland in her neck, she switched to a doctor who took the symptom to be something more serious than a mere infection. In December she received the diagnosis, non-Hodgkin’s lymphoma. She reports that the diagnosis was left unceremoniously on her answering machine, which might have been a massive privacy violation and she has every right and reason to be disgusted by that.
Alice’s story is shared in the book Women Confront Cancer: Twenty-one Leaders Making Medical History by Choosing Alternative and Complementary Therapies, in which she is described as a “real-estate broker, master gardener, and former flight attendant” (33).
In January of 1995, she began working with an oncologist who explained the prognosis, that it was not a curable cancer, but that it was treatable with chemotherapy. She reconstructed the conversation:
“I asked him, “Well, how soon do I need to start it?’
“He said, ‘Today.’
“I asked him, ‘Well, what kind of time are we talking about?’
“He said, ‘Ten years doing chemotherapy, five years if you don’t do the therapy.'” (34)
Alice insisted on an independent second opinion, a completely reasonable course of action. A bone biopsy showed the cancer in the marrow, meaning that the cancer was stage 4. The first mention of Burzynski in the account comes at this cancer center:”
“At the cancer center she asked one of the doctors what his opinion was of antineoplaston treatment, and he dismissed Dr. Burzynski as the ‘pee doctor.’ (His antineoplastons were originally derived from urine.)
Burzynski’s treatment was originally isolated from urine and the claim is that cancer patients lack these endogenous, cancer-fighting compounds. No other physician, researcher, or scientist has ever confirmed this, nor do they recognize antineoplaston as a risk factor for cancer. And the treatment has not gotten any mintier smelling since the early days, it seems. According to one recent patient, whose daughter was being treated with ANP:
BTW if you come over, expect our house to smell funny. Alynn’s medicine has a strong smell. I think it smells like a hamster cage.
The BBC’s flagship investigative journalism show Panorama, in their “Hope for Sale?” which looked into the Clinic. According to the BBC:
It looked like something out of Willy Wonka’s factory. A room full of pipes and noise; a production process that flowed through steel tubes, steaming boilers and glass tanks of bubbling liquid.
But there was one striking difference from a chocolate factory – the whole room smelled of urine.
And USA Today reports that the drugs have an unpleasant odor. Burzynski’s nickname, it seems, is not unearned.
Alice talked to other lymphoma patients and eventually decide to pursue alternative medicine. Part of her regimen was “a concoction of mistletoe and a few other ingredients” (35). And this is the interesting bit. A few months after deciding to not pursue traditional therapy, around February of 1995, she got the results of a scan. Her doctor told her:
“…that I was a case of spontaneous remission. This was either from the herbs that I was doing or from what doctors say about lymphoma, the waxing and waning process.” (35)
When there is no need to invoke the magic potion thrown together with no demonstrable medical skills, don’t. This type of cancer waxes and wanes. It would seem that whatever she happens to be doing as the cancer runs its natural unopposed course in her body will share credit for what the cancer would be doing anyway. This will include Burzynski’s treatment and all the other alt med remedies.
As is often the case, Alice’s doctors do not want to work with Burzynski. According to her story:
When she became [Burzynski’s] patient, she found that most other doctors were unwilling to work with her. ‘I didn’t get help from anywhere. I felt abandoned and alone.”
This, I’m certain, is misleading. Burzynski’s treatment requires a doctor to work with the patient in their home state while they are on treatment. Patients often have a hard time finding someone, especially finding a qualified oncologist, who will work with the Clinic. It’s not that they won’t work with the patient, you see, but with the Clinic. She has a hard time getting the port installed in her chest, where she will take in the ANP. When she does, she has numerous complications, including the port breaking and a piece of it traveling to her heart, where it needs to be removed. As far as I can tell, these are unnecessary complications of the treatment. These are the reasons why doctors don’t work with Burzynski.
Because of complications, including pain from necrotic tissue and swollen lymph nodes, she went off of ANP on 26 October 1996. A few weeks later, she learns that there was a 58% reduction in her cancer. (Of course, it’s still a waxing and waning cancer, so there is no need to give Burzynski any credit.)
It is during Alice’s treatment that Burzynski’s big fraud trial was underway. She appears in the Dallas Morning News at the height of the drama:
“The FDA is violating my constitutional rights to treatment,” said Alice [C], a 45-year old Dallas woman suffering from non-Hodgkins lymphoma. The agency, she said, “has made a list of who will live and who will die. I guess I’m not on the list.”
The article gives an example of a strategy that has worked for Burzynski in the past, letting his desperate patients stand as human shields between him and justice:
“Dozens of Dr. Burzynski’s tearful patients gathered Tuesday to accuse the U.S. Food and Drug Administration of murder for obtaining a court order that could close his practice beginning Wednesday.”
Alice had not ruled out chemotherapy, and she saw it as something to fall back on after she tried alternative medicine. We don’t know if she did rely on chemotherapy in the end. She died on 10 December 2004, however, right in line with her original prognosis if she took chemotherapy. But we simply don’t know. There is no reason to think that Burzynski’s treatment helped her, as the disease would flare up and go into remission on its own. Even if she never had conventional therapy, we can’t in principle know that she wasn’t a statistical outlier or if Burzynski’s treatment helped because both outcomes look exactly the same.
And that’s why testimonials are not evidence of efficacy.