A heartstring-tugging appeal in the NZ Herald doesn’t tell the full story.
Jesse Bessant is a little boy from Auckland with a very rare brain tumour. He has a ganglioglioma, a tumour that arises from ganglion cells in the central nervous system. As these tumours are very slow-growing, and with the location of his tumour (close to his brain stem) making surgery very risky, Jesse’s doctors have advised a ‘wait and see’ approach. However, the Bessant family have opted instead to try the Burzynski clinic in Houston, Texas, where Dr Stanislaw Burzynski offers his ‘pioneering’ antineoplastin treatment.
The catch? It’s going to cost the Bessants $375,000 to join one of Dr Burzynski’s clinical trials. The family’s fundraising appeal was covered by the NZ Herald in early March under the headline: “Hope for toddler with rare tumour”.
So what are antineoplastins and why is a clinical trial at the Burzynski clinic so expensive? Let’s start with those ‘pioneering’ antineoplastins. Might they be the next big thing in the treatment of cancer? I’m afraid to say that this is unlikely, as it turns out that Dr Burzynski has been trialling antineoplastins for over 35 years and has never produced strong evidence that his approach actually cures patients or increases their chances of long-term survival.
In fact the results of his trials don’t seem to have been published in the peer-reviewed medical literature and the American Cancer Society has gone so far as to recommend that people don’t spend their money on antineoplastin therapy. Dr Burzynski coined the phrase to describe a group of peptides that he identified first in human blood and then in urine and which he claimed to be “natural, non-toxic compounds that cure cancer”.
It turns out that the peptides can also be made by the body metabolising the drug sodium phenylbutyrate, which is how Dr Burzynski has been administering them for several decades now. Rather alarmingly, each 500 mg tablet of sodium phenylbutyrate contains approximately 62 mg sodium, meaning there is considerable risk of side effects including lethargy, weakness, irritability, seizures, coma and even death.
So if antineoplastins are just the by-product of sodium phenylbutyrate, why are Dr Burzynski’s clinical trials so expensive? After all, patients don’t usually have to pay hundreds of thousands of dollars to join a clinical trial. Sometimes they might even be reimbursed for taking part! It turns out that Dr Burzynski doesn’t just treat patients with his ‘antineoplastins’ anymore. Instead, he seems to be exploiting a very legitimate trend in real cancer therapy, often referred to as personalised medicine. Here patients are tested for particular disease markers which have been shown to respond to specific therapies. Orac, of the Respectful Insolence blog, has described Dr Burzynski’s “Personalized Gene Targeted Cancer Therapy” approach as “throwing everything but the kitchen sink” at the tumours. In fact, Dr Burzynski’s personalised therapy is part of a complaint against him by the Texas Medical Board, which is currently awaiting a hearing date. The complaint describes Dr Burzynski’s treatment of a patient with metastasised breast cancer, which included prescribing sodium phenylbutyrate with another four very expensive immunotherapy agents, none of which are approved for the treatment of breast cancer, and in combination with a chemotherapy agent.
In fact, it also transpires that Dr Burzynski owns the pharmacy that supplies the drugs he prescribes. His pharmacy is also accused of overcharging for drugs. A former patient, Lola Quinlan, has filed a lawsuit, claiming Dr Burzynski swindled her out of nearly $100,000 by using false and misleading tactics, including charging $500 per pill for drugs that could be bought elsewhere for a fraction of that price. And as well as the cost of drugs, there are his consultation fees, listed on one potential patient’s blog as:
- Review of medical records prior to commencing treatment – $500
- Initial consultation appointment – $1,000
- “Genetic Tumor Markers” test – $4,000
- Monthly treatment fee (with treatment suggested to last 4 to 12 months) – $4,500 – $6,000
All of which might explain why Dr Burzynski lives in a mansion with his initials in gold on the gates! But none of this was covered in the NZ Herald article. Don’t those being asked to donate deserve to know where their money is going? Instead, my emails to the journalist remain unanswered and Letter to the Editor unpublished. And the Bessant family continue to raise funds to send their child to be treated by a man who is accused by the Texas Medical Board of “unprofessional or dishonorable conduct that is likely to deceive or defraud the public or injure the public”. Pioneering? More like profiteering, if you ask me.