*An appeal to help get Congress to take action follows this story*
This week it seems the Burzynski Clinic put up a new statement on their homepage:
LIFE IS PRECIOUS
A birthday, an anniversary, a graduation, a wedding, the birth of a new child. New memories…
When we hear at Burzynski Clinic that our patients are celebrating new milestones, just enjoying life, well… it brings smiles to our faces. We believe so strongly in what we do for our patients. It is not just about the concierge care we provide when they come in the door scared about their evaluation and treatment. It is about helping them fight every day, helping them fight to win the battle. That is why we share some of the stories from our large family of patients:
I’ll hold you to the statement that you believe strongly in what you do for your patients. Let’s see what you did for Andy C.?
31-year old Andy C. was diagnosed with anaplastic astrocytoma after he had a massive seizure during band practice. He went to the Burzynski Clinic. Andy’s story was well documented in the local press, as it was covered extensively by the Harford Courant. What we see is an infuriating, unthinkable botch.
Hilary Waldman covered story for the paper. In the article, “Dose of Hope,” she gave the backstory about how Andy came to be a patient of Burzynski, then she gave an account of the controversy surrounding Burzynski, and finally we follow him on a trip to the Clinic. A few salient quotes from this article, which I encourage you to read in full:
“So far, their insurance has refused to pay for the $5,000-a-month treatment. They’ve run through $25,000. They’ve already borrowed from Andy’s mom and dipped into Allison’s 401K. The down paymentfor the house is long gone. And while the clinic has agreed to take only $3,000 a month up front each month, their debt is accumulating.” [...]
In a darkened cubicle down the hall [from Burzynski's exam room], Dr. Benjamin Saling was reading the MRI. [...]
Saling had good news for Andy. He saw an 84 percent decrease in the size of his tumor when he compared the pictures of his brain from July and October.
Andy was speechless. He smiled for the first time all weekend. Nurse Laura Dominguez, who had trained earlier, gave him a big hug. If this continued, Andy could be off the treatment in eight months, Burzynski told him.
Allison wrote checks for another 30-day supply of antineoplastons and made an appointment to return in November.
Back home, Dr. Lantner was skeptical, but said he would be willing to look at copies of the latest scans. All Andy had to do was drop the pictures by his office. He had compared Andy’s MRIs from June and July and said it was too soon to see any appreciable change in the tumor. Now it’s been four months, and one part of Andy would like to know what Lantner thinks.
84%. Wow. That would be great news. How did the independent doctor evaluate the scans? We find out in another article a few weeks later:
A month later, with a Hartford television news program documenting his story, Andy returned to Houston, where Burzynski noted more progress.
Andy was suspicious. In the waiting room, he had seen a report from the independent lab that interpreted his brain scans. All it said was the tumor was stable, no recurrence. But Andy still wanted to believe.
Back home, Andy had set up an appointment with St. Francis neurosurgeon Howard Lantner, who had removed part of the egg-sized mass from his head in April.
“I wanted to show him all of my [records] and he was going to confirm my great progress for the news crew,” Andy said.
In his office the next day, Lantner explained that Burzynski’s staff had read the scans wrong. They were not measuring the tumor, they were measuring the hole where a portion of the tumor had been removed. What they saw as a shrinking mass was actually the healing from the surgery. The remaining tumor cells were just where Lantner had left them.
Andy and Allison were devastated. It was a day before Thanksgiving. “It was like we were back in May, it was like six months wasted,” Andy said.
What was the Clinic’s response to this colossal failure, which conveniently would have kept Andy off of legitimate treatment for at least 8 more months ($40,000)?
[Andy] started calling the clinic demanding answers and a refund. Burzynski and other clinic doctors told him to get a second opinion.
They have since stopped taking his phone calls.
Dean Mouscher, director of clinical trials for the clinic, said Saturday that Burzynski still contends that Andy was doing well on the treatment and should have continued it.
But even if it turns out that the treatment failed, Mouscher said, Andy went into it knowing there were no guarantees.
“I’m sympathetic, but he signed an informed consent stating that [the treatment] was experimental,” Mouscher said.
This is why this site exists, because I trust you when you say you “believe so strongly in what we do for our patients.” Andy died in July 2000. A fund was established for his daughter.
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.