This installment is going to be a little bit different as there is primarily one source, but it comes straight from the Houston Chronicle (5 Jan 1997), so I trust it is reliably trying to get the story correct. The reason why we tend to believe Edward’s widow, Michele, is because her account lines up precisely with so many other stories on this website.
Edward P. had brain cancer, a glioma. It was diagnosed in 1995, when he was 28. He underwent surgery and had radiation therapy, which seems to have delayed the progress of the disease. In March of 1996, however, the tumor came back. A course of chemotherapy was apparently offered, and with it a 30% chance of recovery. (This seems high to me.) Edward and Michele elected to go to Burzynski’s clinic based on something that they had seen on CBS’s 48 Hours, who I hold responsible for not protecting the community or doing due diligence on this case. This man is still out there, still doing exactly the same thing to patients, and you let him get by you.
In May 1996, the family went to Houston to begin the antineoplastons. They spent the customary 3 weeks learning how to administer the therapy. They were home by early June. On June 10th, Edward was behaving oddly. Michele called the clinic and Edward was admitted to the emergency room. There doctors found that the glioma had gotten into the lining of the brain and was blocking cerebrospinal fluid. (This made a friend of mine ineligible for an experimental treatment at St. Jude.)
What happened next is absolutely unfathomable.
While the doctors said that Edward was dying (such a blockage is a severe complication), Burzynski, when he was given the MRI, according to the Chronicle, told them “the medication was working and that he saw no evidence that the tumor had invaded the brains lining” (meninges). As Michele described her June 14th meeting with Burzynski to the reporter:
“He blew off the tumor. This man was telling me that my husband was going to make it when the other doctors were telling me my husband was going to die.”
They stuck with antineoplastons.
During the last week of June, they were told the same thing again. According to the Chronicle:
“[Michele] said [Burzynski] told her that the U.S. Food and Drug Administration said he could no longer treat her husband, but that he could not stop her from continuing. He told her the dosages to use.”
This is by itself bizarre. Edward continued to decline, and on July 12 Michele called the clinic to tell them that they were discontinuing treatment. Edward died on 14 July 1996.
By itself, maybe the doctor was just wrong. It happens. But we have seen this OVER AND OVER. Burzynski or his staff tell patients, apparently as a matter of routine, that worsening symptoms are indications that the patient is getting better. This is not a fluke. Need I list the patients who have reported over and over and over the same thing?!
“[…] she’s been there for 10 years & has seen this before & many times, the more severe symptoms that are seen as a result of the therapy is really a good sign that it’s working better.”
What about Leo D? And now Edward P. THIS is why this site exists. To put the experiences of patients in the context of the experiences of other patients. This has been going on for decades–this same line has been fed to how many patients? God only knows! And they put off other treatments to see this quack.
But that’s not all. There is some question about what this family was told, why they even decided on Burzynski in the first place. Michele claimed that they were told that they were told that there was an 80% chance of recovery. The Clinic’s spokesperson, Dean Moucher, replied:
“Every patient signs an informed consent that states very clearly that the treatment is experimental in nature, that we cannot promise a cure, that we cannot promise a response and we cannot promise anything whatsoever.”
I’m sure he means, “…other than a HUGE whopping bill.” Michele admits she signed the informed consent form, but she sticks by the statement that Burzynski and another doctor quoted 80%. I’m not going to accuse a cancer patient of lying.
This self-serving, legalistic defense of clearly deficient care–care that is part of a pattern now stretching back decades–is abominable.
Michele reported charges totaling $32,000 for seeing Burzynski. This included 15 charges of $200 for two-minute calls to the clinic. Barbara Tomaszewski, Burzynski’s account manager, said these were for calls that the clinic had made. Michele said that she initiated the call terminating treatment and that the clinic charged her $200 for it. I’m not going to accuse a cancer patient of lying.
Barbara was stone cold. She was the one who shook down breast cancer patient Denise D. As Denise told it at the time:
When I talked with Barbara T (the Financial Manager) at the Burzynski Clinic and told her that the charge of $1000 per infusion AND an Additional $1500/month to handle” the (3 small vials of) Zometa was just more than I could afford, she told me “Well, we have to survive here”.
Excuse me? How About Me Surviving Here? If I can’t afford to stay at the Clinic, then I can’t pay for You to “survive” and if I’m dead, then I certainly am not paying for Your “survival”…
And it’s not like the damage was limited to just Michele and Edward. Edward’s parents mortgaged their house to loan the couple $30,000. The Clinic benefited from their desperation too.
We challenge the members of the Burzynski Patient Group to consider this case. How is this ethical? How is this even competent? How could you support someone who has done this to so many people for so long? And why would you expect them to be any more honest with you, especially when you’ve shown that you are willing to fall all over them? There are dozens and dozens more cases just like this waiting to go up. Do you really support the people who are behind this? At what point will you doubt yourself?
We’ll let Michele have the last word:
“Maybe I’ll deter someone someone else from making a bad decision. And it was a bad decision.”