*An appeal to encourage Congress to investigate this follows Andrea’s story*
In June 1997, 26-year old Andrea W. was diagnosed with a glioblastoma, a brain tumor, and this one was growing fast. Andrea was a nurse in Jordanville, NY, and after surgery, she was offered chemotherapy and radiotherapy. In August, she was in Houston with her family at the Burzynski Clinic. The clinic, according to the family, told them that Andrea had a 30% chance of recovery. Now, imagine that you have been told that the best chemotherapy and radiotherapy could offer you would be a few months, but you had a 1/3 chance of a life if you went with Burzynski. Well, hands down, this is what gets people into the clinic. Whether or not those claims can ever stand up to scrutiny, we won’t know because Burzynski apparently won’t publish.
The family put $16,000 up to start treatment at the Burzynski Clinic.
According to a 2000 article in US News and World Report (the source of much of this story):
Over the following six weeks, [Andrea's mother] says, her daughter suffered side effects ranging from disorientation and high fevers to constant thirst. She and her husband [...] repeatedly complained to clinic personnel. Each time, she says, “the nurses were jubilant. They said this [side effect] was a sign the tumor was breaking up.”
Burzynski’s staff have been feeding people this line for decades: getting worse is getting better. See the cases of Evan W, Justin B, Georgia M, Cody G, Leslie S, Domenica P., and Chase S. Think of Amelia S. Again, I think of the nurse told John D.:
“[...] 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.”
How is this allowed to continue, and for how much longer? The mere existence of this misery factory baffles.
On September 22nd, the family received results of a scan that showed that the tumor had DOUBLED in size, the Clinic said that Andrea had to come back down to Houston or she would be dropped from the clinical trial. On the 28th, instead of going into hospice and receiving palliative care, Andrea went to Houston with her best friend Mary. What we hear next is stunning:
After they arrived, according to [Andrea's friends and family], another doctor at the Burzynski clinic told the two women the tumor was dissolving. That doctor called Andrea’s parents on September 29, telling them the tumor was shrinking and their daughter would be back to work. “I can’t tell you how happy we were,” says [Andrea's] mother. She and [her husband] ran up their credit cards to come up with the $7,000 for the next month’s treatment.
This is extremely important. The family had just sunk a lot of money into the treatment, having been told that Andrea was improving:
On October 1 [Andrea's] brain swelled massively, just as her flight home was beginning its descent. Henry Friedman, a neuro-oncologist at Duke University, and Victor Levin, a brain-tumor specialist at MD Anderson Cancer Center in Houston, and Boehm, her neurosurgeon, say she should never have traveled any distance from a hospital emergency room. Counters Burzynski: “It’s not up to us; that’s up to the local physician.” Boehm says the Burzynski clinic never called to ask him whether Andrea was fit to fly.
The patient history in Burzynski’s report to the FDA states that [Andrea] did not die under his care. She is listed as having withdrawn from treatment September 30, two days before she died. But according to the [W]s and [Andrea's friend], a nurse, Andrea was still receiving antineoplastons just before she boarded the plane. “If she withdrew, why was she carrying a suitcase full of the medicine?” [her father] asks. Burzynski says he listed [Andrea] as having withdrawn on September 30 because that was the last day she was treated.
This is some dark, dark stuff here. As far as I can tell, it is cold, merciless exploitation of the desperate. Having read so many dozens of patient stories, I am of the opinion that not a word that comes out of that place is to be believed, not a prognosis, not an interpretation of a scan. Not a patient record. My heart goes out to Andrea’s family.
According to the Globe and Mail (9 March 2000), Andrea’s parents were still paying off the debt that they had run up for Burzynski two and a half years later.
Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again. Find out about real clinical trials by visiting clinicaltrials.gov.