No, this treatment won’t save Demi’s life

Picture of Stanislaw Burzynski, an elderly white man with brown hair and a short moustache but no beard, wearing an open-necked cream/white striped shirt and a white lab coat over the top, standing in front of a red and green wall display with some images of brain scans on it.This morning I came across an appeal to raise money to help an 11-year-old British girl, Demi Knight, to receive ‘treatment’ for her cancer in Houston, Texas, from a guy called Stanyslaw Burzynski at a private clinic. Today the papers were reporting that enough money had been raised (around £25,000) to help Demi start the treatment (and that the family had “cut some corners” and borrowed money) but they were still soliciting money for further treatment as a ‘course’ can cost up to £150,000 including flights and accommodation. The story was repeated in the Lincolnshire local press (such as here and here but the Sun was also promoting the story. Doctors in the UK have told the family that there is nothing more they can do and that the cancer is spreading, is likely to affect her senses and movement before long as it is in her brain and spine, and that she has months left. What the papers have not mentioned is that the treatment is most charitably described as unproven despite Burzynski having been in business for 40 years, and that he is widely accused of being a charlatan who sells false hope for money. (More: Respectful Insolence with more detail about past cases and links to articles exposing Burzynski’s methods and behaviour, and his run-ins with the law.)

A few years ago BBC’s Panorama did a 30-minute feature on Burzynski (which you can view here) and interviewed two British families and one American couple who had paid money to Burzynski for his treatments. The two British families both had daughters who were ill, and one of them found that Burzynski’s treatment made her daughter very ill with hypernatremia, or high sodium in the blood, and she ended up in intensive care at the nearby Texas Children’s Hospital, which is intensely opposed to Burzynski’s methods because they always end up clearing up his mess, and a doctor they interviewed said she had never known a Burzynski patient to survive (and by the way: if a Burzynski patient requires treatment in another American hospital, it costs money — people go bankrupt because of medical bills there). The American man had gone to Burzynski because he did not want to take ‘traditional’ chemotherapy or radiotherapy, but Burzynski said he was not eligible for the antineoplaston treatment which is his top selling point, but prescribed a cocktail of other drugs instead. His oncologists back in Georgia were appalled.

Burzynski is opposed by the medical community at large because he does not share his methods or the results of his ‘trials’ with the wider scientific or medical community. He claimed when approached by the Panorama team that he could not reveal how many patients he had treated and how many had survived because of FDA (Food & Drug Administration) rules, but the FDA says otherwise. Burzynski prefers to sell his treatment to patients directly by means of a film (which can be viewed on YouTube here) and trading on conspiracy theories about the medical profession, “Big Pharma” and why they supposedly sit on cures for cancer. He has been in this game since the 1970s and if antineoplastons worked, they would have gone mainstream many years ago, much as is the case with laetrile, the chemical extracted from apricot kernels and bitter almonds which supposedly cures cancer (if you do not die from cyanide poisoning first).

Burzynski has been peddling this treatment as “experimental” after forty years — that is simply too long to be credible. It is not normal to expect patients to pay to be included in a clinical trial. Not a single randomised, controlled trial has been published in any peer-reviewed journal, and the American Cancer Institute says there is no evidence of a single incident of cure or even that any patient’s life has been extended. According to USA Today, the clinic mainly prescribes chemotherapy rather than ANPs (despite its supporters in past decades having used the slogan “say no to chemo”), but even this has raised the suspicions of the Texas Medical Board which has accused it of prescribing chemotherapy drugs in “random and unapproved combinations, with no known benefits but clear harms” (Burzynski personally got off that charge by claiming that another doctor at his clinic wrote the prescription). In short, what they offer now is nothing more than you will get in any British hospital, and quite possibly more haphazardly and less well-targeted.

I have been told I should not sneer at someone for trying what they can when all other options have been tried and “conventional medicine” has not worked. However, this is not alternative medicine but, simply, wannabe conventional medicine or bad conventional medicine. It is an adult’s prerogative to try things like this either when conventional medicine has failed or, indeed, instead of it, but to subject a child to unnecessary suffering for this is cruelty. The money for this would be better spent on a trip to Disneyland, as it will enable her to have a trip of a lifetime and enjoy herself before she becomes too ill to travel anywhere, rather than suffering through futile and haphazard treatment in a clinic thousands of miles from home, and then dying anyway.

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