Experts warn: Don’t be so quick to cite ‘ living proof’

Other therapies, factors come into play with success stories

Mary Jo Siegel says she believes Burzynski cured her lymphoma 22 years ago. “I went to see a doctor at UCLA, and he told me I was going to die of this disease,” says Siegel, 63, of Ventura, Calif. “He is curing cancer. I am living proof.”

Yet independent oncologists say that appearances can be deceiving. Experts cite several reasons to be skeptical of Burzynski’s claims.

Anecdotes don’t tell full story. Individual success stories can be misleading says Arthur Ca- plan, a professor and head of the division of bioethics at NYU Langone Medical Center. For every patient who says he was cured, there could be more who can’t speak up, because they died or were harmed. Therapies are unproven. When doctors look for reasons why a patient does well on a therapy, they look for the most plausible explanation, says Jan Buckner, a professor and chairman of oncology at the Mayo Clinic in Minnesota. Burzynski’s therapies have never been proven effective in a definitive clinical trial, according to the National Cancer Institute. Misdiagnoses happen. “When I hear a story that is way out of the norm, the first question I ask is, ‘ OK, is the diagnosis even correct?’ ” Buckner says. “If the diagnosis wasn’t right to start with, it doesn’t matter what the treatment was.” Brain tumors are notoriously difficult to diagnose, he says, and it’s possible to mistake a benign tumor for a malignant one. When dealing with rare brain cancer, doctors may disagree about how to interpret imaging results up to 40% of the time. Some of Burzynski’s miracle patients may have not had a malignant tumor at all, he says.

Patients may have been cured by previous therapy.

Many of Burzynski’s patients have had one or more previous types of conventional cancer care — surgery, radiation or chemotheraphy

But these therapies may have delayed benefits, taking weeks or months to shrink a tumor. So patients treated by Burzynski may credit him for their progress just because he was the last doctor to treat them, says Peter Adamson, chair of the Children’s Oncology Group, an NCI- supported research network that conducts clinical trials in pediatric cancer.

Conventional cancer treatment can also cause tumors to swell temporarily, due to inflammation. A patient who isn’t familiar with this phenomenon may assume her tumor is growing. When that swelling subsides, patients may assume it’s because of Burzynski, Adamson says. In reality, their tumor was just returning to its previous size.

To avoid such confusion, researchers typically require patients to wait before starting a new treatment, Adamson says.

FDA inspections, obtained through the Freedom of Information Act, show that Burzynski has repeatedly failed to follow that basic practice. He has allowed patients to move straight from conventional therapy into his trials, according to inspections from 2001 and 2013. In one case last year, Burzynski allowed a patient to begin antineoplastons the day after finishing chemotherapy, according to FDA inspections.

In another case, in 1998, a patient received both radiation and antineoplastons at the same time, according to a 2001 FDA inspection.

In an interview, Burzynski brushed off criticism, describing his detractors as “competitors who want to put us out of business.”

“I don’t read this trash,” he said. “I have more important work to do.”

Burzynski’s attorney, Richard Jaffe, dismisses the notion that Burzynski’s success stories are all happy accidents.

“When your premise or bias is that it doesn’t work, there is always something you can say,” Jaffe says.

MICHAEL STRAVATO FOR USA TODAY Stanislaw Burzynski’s supporters are made up largely of people who credit him for curing them or their loved ones.

MICHAEL A. SCHWARZ USA TODAY Lisa and Wayne Merritt of Armuchee, Ga., say they got a “highpressure sales pitch” from the Burzynski Clinic. “We felt like he was out to get every penny he could get from us in a short amount of time,” Lisa says.