Regular readers might remember this unfortunate young girl, who was diagnosed with a diffuse intrinsic pontine glioma of the brainstem last year. The tumor was inoperable, and, unfortunately, Billie’s parents turned, as all too frequently happens, to a dubious doctor by the name of Stanislaw Burzynski. Dr. Burzynski, as you will recall, is a doctor in Houston who claims to have discovered and purified anti-cancer compounds from urine (which he dubbed “antineoplastons”) that he now synthesizes and uses to treat cancer with no convincing evidence that they have anticancer properties in patients, billing them as “natural” and, above all, “non-toxic.” Whether they are any more “natural” than something like angiostatin is arguable, that they are not non-toxic is not. He also charges his patients huge sums of money to be on clinical trials that somehow never finish accruing and are almost never published in reputable journals. He also peddles what I like to call Personalized Gene-Targeted Cancer Therapy for Dummies because it’s clear that he doesn’t know what he is doing and is putting the cart before the horse. Of late, Dr. Burzynski has rebranded his antineoplastons as being the product of the metabolism of an orphan drug.
The reasons that Billie Bainbridge came to my attention are two-fold. First, when a skeptical blogger named Rhys Morgan criticized Dr. Burzynski and cited Billie’s case in particular, the result was the Burzynski Clinic sending its utterly inept PR flack to issue vacuous legal threats. Hilarity ensued, and the Burzynski Clinic disavowed this flack but did not disavow his methods. The other reason is that Billie is emblematic of what Burzynski does. Her parents raised hundreds of thousands of pounds to take her to Houston to be treated by Burzynski, in the process recruiting some famous U.K. entertainers to stage benefits to support that treatment, a process I’ve referred to before as kind-hearted strangers being hit up to support woo. There are so many issues: Desperate parents and relatives scrambling to raise money from kind-hearted strangers who don’t know that what they are supporting is dubious at best and quackery at worst; the cult of personality that Burzynski has cultivated; and, above all, why the Texas Medical Board and the FDA are seemingly powerless to stop him. Meanwhile, despite the picture of Dr. Burzynski being painted by his admirers as the only one who can save these children, despite his claims that he can do better than conventional therapy, his patients continue to die.
Patients like Billie Bainbridge.
Billie’s death is a tragedy, just as all deaths of children are. In our society, children aren’t supposed to die. Old people are. And, in fact, the deaths of children, which used to be common before modern medicine drastically decreased childhood mortality, mostly due to infectious diseases, are now thankfully very uncommon. This magnifies the grief and sense of loss when a child like Billie does die. So much life, so much promise, all cut ridiculously short by the vagaries of biology. Our hearts bleed for the parents, because losing a child is rightly considered by most people to be the worst loss a person can endure.
Certainly, the false hope that Burzynski gave, coupled with what he put the family through to raise exorbitant sums of money for his woo, didn’t help.