A patient you won’t hear about from Stanislaw Burzynski or his apologists

It’s been a while since I mentioned Dr. Stanislaw Burzynski, the Houston doctor who has somehow managed over the last thirty-plus years to treat cancer patients with something he calls “antineoplastons” without ever actually producing strong evidence that they actually cure patients, increase the chances of long-term survival, or even improve disease-free progression. Although there was a tiny bit of prior plausibility behind the concept–albeit only very tiny–back in the 1980s, the relentless drip, drip, drip of negative evidence, coupled with Burzynski’s failure to advance his therapy beyond phase I and II preliminary trials (he has a phase III trial that remains, after a considerable period of time, unopened) or to publish any compelling evidence that his antineoplaston chemotherapy works (and, make no mistake, it is chemotherapy, Burzynski’s efforts to represent it as “not chemotherapy” not withstanding), has completely eroded even the minimal plausibility his therapy had. More recently, Burzynski has tried his hand at what he calls “personalized, gene-targeted cancer therapy,” which basically boils down to his looking at genomic tests and biomarkers and then using the results to pick a cocktail of chemotherapy and targeted therapies to throw at the cancer without much thought, rhyme, or reason. In other words, what Burzynski does is at best a parody of real personalized, gene-targeted cancer therapy, which is currently in its infancy. What Burzynski does is basically making it up as he goes along. More recently, Burzynski has latched onto an orphan drug (sodium phenylbutyrate) because it is a prodrug for one of his antineoplastons.

While Burzynski’s abuse of science and medicine takes protean forms, one thing that’s remained consistent through it all is his charging tens (sometimes hundreds) of thousands of dollars to treat desperate cancer patients. Worse, because the FDA has banned him from treating patients with antineoplastons outside the context of a clinical trial, Burzynski has a whole bunch of scientifically dubious clinical trials for which he charges his patients to enroll, a practice that is usually at least frowned upon and, more appropriately, viewed very dimly because it is generally considered unethical. Worse still, because Burzynski charges so much, a fair number of his patients resort to fundraisers or, as I call it, harnessing the generosity of strangers to pay for woo and in general building up a cult of personality around himself in the “alternative” medicine world and threatening skeptical bloggers who had the temerity to write about him. activities. More recently, Burzynski has been sued for misrepresenting his clinical trial and requiring a patient to buy the expensive chemotherapy and targeted drugs he prescribed from a pharmacy that he owns–without informing the patient that he owned the pharmacy. The only thing that’s not surprising, then, is that Dr. Burzynski is being pursued by the Texas Medical Board. What is surprising is that the TMB failed to strip him of his license back in the 1990s, which was the last time it paid significant attention to him.

It’s sad, too. Over the last few months, there have been a procession of children, in particular from the U.K., whose parents have raised money to bring their children to Houston to be treated by Burzynski. All of them are desperate to save the lives of their children. All of them are being preyed upon by Dr. Burzynski.

Earlier this week, I learned via Skeptic that one of them died:

St. John, Kan. — Four-year-old Brynlin Sanders lost her battle with brain stem glioma, – an inoperable form of brain tumor – at her home Saturday.

The daughter of Michael and Heather Sanders, the young girl touched the hearts of many and figuratively became a daughter of the county with numerous fund raising events and gatherings for her benefit.

Over 600 people attended a New Year’s Eve fund-raiser that netted over $50,000 for Bryn’s medical fund. It was one of many events held for the darling blonde with the infectious smile.

Brynlin was diagnosed with the tumor in November of 2011. When it was determined that the tumor was inoperable, Bryn was enrolled in a special treatment program at Burzynski Clinic in Houston. She returned to St. John to continue home-based treatments in late December.

Brynlin’s funeral was yesterday.

I can’t imagine what it must feel like to lose a child. I’ve lost relatives, even close relatives, but there’s something different about a child suffering from a terminal illness. I can to a great extent understand how the parents might be so desperate that they would be easy prey for someone like Burzynski. Doctors tell the parents that there is nothing further they can do. Then along comes Burzynski telling them the opposite. With utter confidence, he tells them that his antineoplastons might be able to cure their precious little girl when the doctors tell them that all they can offer is palliative care. The parents listen, but then find out from Burzynski’s finance people that is treatment is really, really expensive and Burzynski wants cash up front, tens of thousands of dollars. The Sanders’ neighbors find out about little Brynlin’s plight. Because they are kind-hearted people, they want to help. So they help the Sanders organize and hold a fundraiser on New Years Eve, and people came. In fact, enough people came that the Sanders were able to raise over $50,000 through attractions at the fundraiser such as a hog feed and a live and silent auction. How much of that money went straight into Burzysnki’s pockets I don’t know, but if the Sanders had medical insurance (and even if they did not, thanks to the SCHIP program, chances are good that Brynlin did), the expenses for standard-of-care cancer treatments should have been at least mostly taken care of. The only reason they would need to raise $50,000 would be to pay for non-standard cancer treatments that neither private health insurance nor SCHIP will pay for.

Treatments like Burzynski’s antineoplastons.

Burzynski couldn’t save Brynlin. He offered hope, demanded money, and the end result was the same. Little Brynlin died. Burzynski didn’t kill her, but he didn’t help her either. What he did do was to offer tantalizing hope, hope that Brynlin might survive her terminal disease. It was a false hope that drained the Sanders’ bank accounts and made a mockery of the generosity of so many good people who donated to the Sanders’ medical fund thinking that their money was going to help a little girl with a deadly brain tumor.

It’s very difficult to write a post like this because, no matter what I say, there will always be someone who will interpret it as attacking the Sanders, as kicking parents who’ve just lost a child while they’re down. That is not my intent. The Sanders did what they thought was right for their child. Unfortunately, they very much made the wrong choice. Their child died anyway because Burzynski can’t offer anything better than what science-based medicine can offer, his claims otherwise notwithstanding. What he can do is to make the remaining time of children like Brynlin worse than it needs to be. What he can do is to take parents who are already under unbelievable, sometimes unbearable, pressure and add the additional pressure to raise huge sums of money to pay his exorbitant charges for his ineffective treatments and incompetent “personalized gene-targeted cancer therapy.” What Burzynski can and does do is to provide false hope that keeps parents chasing money to pay him and keeps them from concentrating on what is needed: Making their child’s last days on earth as happy and bearable as possible. When it’s over, the end result is the same. The child is dead, but the child’s family is worse off, their bank accounts drained and money begged from kind-hearted strangers flushed down the sewer that is the Burzynski Clinic.

Burzynski touts his seeming successes, the patients whom he treats who survive longer than would normally be expected. Brynlin, alas, followed a more typical course for a children like this, dying only three months after diagnosis. In fact, she did worse than average in Burzynski’s care. You’ll not infrequently hear from apologists of doctors like Burzynski a single question: What’s the harm? Children like Brynlin Sanders are the harm. It’s a harm you won’t hear about from Burzynski or his apologists.