Burzynski Patient Priscilla P.’s Story

Priscilla P. had driven a school bus in numerous cities around the country. In November 1998, she was diagnosed with ovarian cancer. She had radical surgery, a complete hysterectomy and removal of her gall bladder, appendix and lymph nodes. Following that, she endured a year and a half of chemotherapy.

On 8 June 2000, her story appeared in the Atlanta Journal Constitution, raising awareness of a fundraiser for Burzynski:

The chemo slows the cancer, but it’s still growing. But [Priscilla] is upbeat, determined and not about to give up. Her bright blue eyes are animated as she explains Dr. Stanislaw Burzynski’s experimental treatment program in Houston, where she has been accepted as a patient. The treatment is called antineoplaston therapy. Very basically, antineoplastons act as a biochemical microswitch, turning on tumor ­suppressing genes to stop tumor growth.

“My son read about it in People magazine,” she said. “Basically, you have an infusion or take a pill which only attacks cancer cells, without destroying healthy cells. It teaches the cancer cells to die. . . . He’s had over 3,000 patients with great results and very good results with soft sarcomas, which is what I’ve got.”

There’s only one snag to the scenario, and that, of course, is money.

Of course. he has no track record–no basis to claim ANY results with sarcomas because he has never published a respectable account of his treatment. And there is similarly no evidence that ANP is a “biochemical microswitch,” an unnecessarily sciency term if I’ve ever seen it. The article continues:

Since the clinical trial has not yet been approved by the FDA, insurance companies won’t pay for the treatments, which would total about $50,000 for a five-­month program. Like most people, [Priscilla] doesn’t have access to those kinds of funds, and the clinic requires up-­front payment of $20,000 before treatment can be started.

“I can’t understand why insurance won’t pay,” said [Priscilla]. “The cost is a bout the same as chemo, and it would only be for five months, where the chemo can go on indefinitely. . . . Less than five percent of patients are able to go for these kinds of clinical trials because of the money situation, but this is how cures are found. If they don’t have the people to do the trials, how can they hope to find a cure?”

I hate to have to disagree with a patient, but this is NOT how cures are found. Respectable researchers secure funding on the basis of the merit of their ideas, their track record, their ability to convince knowledgeable peers at research foundations to sponsor their research, or their ability to attract investors. Disreputable quacks hit up the dying for cash and bleed the desperate dry, never publishing anything convincing.

Part of Priscilla’s mission, it seems, was to spread the gospel of Burzynski, and she and her family repeated his talking points to the press, who dutifully reprinted it without critical comment, which is deeply irresponsible. I guess fact-checking is something that other newspapers do.

Education of the public is part of what they hope to accomplish as well, said [Priscilla’s daughter].

“I just want people to be aware that these kinds of treatments are available, but people can’t use them because they don’t have the money, and insurance won’t pay,” said [Priscilla’s daughter].

“The other thing is that people like my mom get accepted after everything else is exhausted. She’s had a year and a half of chemo, and she’s completely run down by it. What would have happened if she went (for the treatment) right after surgery? She may have been completely cured by now. If they could go immediately when diagnosed, rather than after chemo brings them to death’s door, how much more effective would that treatment be?”

In all probability, the fact that Burzynski’s patients usually have had prior treatment has lengthened the lives of his patients, as there is no evidence that his treatment does anything. It also gives Burzynski a bogus out for whenever a patient dies: It was the prior treatment that killed them.

On the 22 June an update appears. The fundraiser was successful and raised enough money for Burzynski that he’d let her start.

After the second month of treatment doctors will know whether or not it is effective. If it is not, [Priscilla’s daughter] plans to donate the rest of the money to another candidate for the treatment. The obstacle of money is almost overcome, but now there is a challenge of finding a place to stay during the treatment. [Priscilla’s daughter] is looking into several possibilities, including the Ronald McDonald House, but hopes a local resident with ties to Houston will help. Right now, [Priscilla] is being treated at Kennestone Hospital for blood clots in her lungs.

The Ronald McDonald House has denied Burzynski’s patients housing in the past because of who their doctor is. Think about what that says about the doctor.

An update appeared on November 23 in the AJC. She’s on treatment, and the family is still raising money for Burzynski:

To fund an experimental cancer treatment in Texas, she is selling cookbooks at Curves for Women, a Woodstock business on Main Street that features exercise and health routines for women. The $10 cookbook features low-­fat recipes for busy people and was written by Dawn Hall. The treatment costs  $9,200 a month and lasts five months. [Priscilla], 58, undergoes a 24­-hour­ a ­day infusion of anticancer medication and ingests several dozen pills daily.

Priscilla died of her ovarian cancer on 23 August 2001.

For reliable information about clinical trials, visit clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay.

(Tip of the hat to the Research Ninja, whose hard work made the recent flurry of posts available. Many more to come.)