The Burzynski Clinic Problem
Tauriq Moosa is a tutor in ethics, bioethics and critical thinking at the University of Cape Town, South Africa. He is currently pursuing a Masters degree at the Centre for Applied Ethics, Stellenbosch University. He has published essays and articles on practical ethics, focusing on subjects like free expression, killing, sex, and religion in public life. He debated religion with Archbishop Desmond Tutu in the BBC documentary, the Tutu Talks, and has been featured on local radio shows. He is also an avid comic book writer and reader.
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by Tauriq Moosa
When someone defies the odds, it’s common practice for him or her to attribute their ‘winning’ to what we might call tokens: a lucky jacket, a prayer, some new therapy. Tokens are not phenomena which directly cause success, but are merely hope made manifest. We really want to defeat the odds and we’ve heard from people who have done so, ‘winners’ or survivors, that praying, giving gifts or using this therapy works. After all, so many have been defeated by the odds – because by definition the odds are against winning – that we have to factor out what makes these people winners and all these others losers. The problem however is that we tend to be quite bad at identifying the real things that aid us against the odds. And this can have dire consequences.
The problem is not learning from survivors, but what we learn. Here people are deluded into thinking it’s the token, rather than another aspect of the survivor’s life. For example, when someone claims he was cured of cancer because of some fringe medical clinic, many will take him at his word.
The reason is partially justified: Our survivor had some apparently incurable disease and is now better (not completely cured but perhaps still alive, which is incredible enough). We will look at him and compare him to other similar sufferers. What did our survivor do that the others didn’t? Well, he claims, he was on this new, maverick doctor’s treatment which medical science is not using. You dig a bit more and you find out that there are more survivors like him. It’s incredible: All these people had serious conditions and went to this doctor and are now cured!
Recently, an important scenario exactly like this has risen in the form of the Burzynski Clinic. There have been a few (read: plenty of) blogposts on the clinic, as it recently groped its way into our awareness because of the case of 4-year old Billie Bainbridge, who has inoperable brain cancer. It’s a case almost tailor-made for a tissue-fest Hollywood film and, unfortunately, because of that, many critical views of the science become diluted by the tears of the desperate and deluded. While the case discussed is incredibly sad, it doesn’t detract from the problems raised, which have been highlighted brilliantly elsewhere.
The clinic uses an unverified treatment therapy, ‘antineoplaston therapy’ which allegedly targets cancer cells. This therapy involves extracting antineoplastons from the patient’s urine, then getting it back into the patient. Its efficacy is, however, unverified, and is therefore not approved by the FDA. Dr Saul Green, a biochemist who researched cancer for 23-years, presents further reasons for thinking antineoplastons are quackery.
Despite this, Dr Burzynski – who originally made the claims for antineoplaston therapy – is allowed to continue his using the therapy, as long as he claims its for research reasons: thus, his patients are on trials to help obtain evidence for his treatment’s supposed efficacy. Of course, people that want to be on his therapy must pay exorbitant amounts, which raises plenty of ethical issues on its own (Should you pay for a therapy which is not even approved, but would only make you part of the study for its efficacy?)
But he’s been doing it for more than three decades and has produced no results that could be either replicated or taken seriously by his colleagues. Despite what Hollywood tells us, scientific advancement usually doesn’t arrive ex nihilo into a maverick’s mind. Fringe workers don’t always mean Galileos. They could, like Burzynski, just be dodgy snake-oil peddlers.
It appears that Dr Burzynski has a shield of sycophants, whose justifications rest with tearful conviction and thumb-to-chest justifications. They themselves claim to be evidence for the clinic’s importance and its claims’ veracity. When criticism has been raised of Burzynski, his supporters have emerged to shout down or drown out the criticism. Some have even gone as far as to threaten (libel against) bloggers, though I believe the clinic has distanced itself from the person who originally did this.
Even on fairly benign online forums, like Yahoo! Answers, the Burzynskites have emerged with “was told "nothing more can be done" by my onc and then began antineoplaston therapy (intravenous) for 10 months then capsules for 7 months. Achieved complete remission by 4/99 and I have remained cancer free ever since- no medicine, no therapies.” Or “I know that Dr. Burzynski is legitimate. I have my 30 year old son, Paul, as living proof of that fact.” And so on.
Diagoras of Melos is considered by some historians, like Jennifer Hecht, as the most famous atheist of the fifth century. Walking with a friend one day, votive gifts were pointed out to him. “You think the gods have no care for man?” his friend barked. “Why, you can see from all these votive pictures here, how many people have escaped the fury of storms at sea by praying to the gods who have brought them safe to harbour.”* Diagoras reply is an important one. “Yes, indeed,” Diagoras said, “but where are the pictures of all those who suffered shipwreck and perished in the waves?”
They are silent. No matter how many tears are shed or voices raised in Burzynski’s defence, it will not alter the scientific credibility of the treatment. Though perhaps it shouldn’t, many will look on such a reaction as evidence against the claims, since if you require emotions and anecdotes to justify your claims, you probably don’t have anything else. If you did, you wouldn’t be using (only) emotions and anecdotes.
Burzynski’s treatment is a token, like prayer or votive gifts. Patients who were on his treatment and survived will attribute their survival – or ‘winning’ despite the odds – to his treatment. Like those who survived the stormy seas, tokens undermine those things which probably really aided the survival.
Every time I rub my ear, someone in the world blinks. But you would think me mad if I said it’s because I rub my ear that someone in the world blinks. That is mistaking correlation for causation (though that is itself a messy distinction). Like my ear-rubbing and people blinking, giving votive gifts doesn’t do anything to aid survival, except perhaps to provide psychological confidence, which pays off pragmatically later. We undermine those truly helpful aspects because we are awed by tokens and winners attributing their winning to the tokens.
What about proper medical treatment that occurred concurrently with Burzynski’s? What about random remissions? Like surviving a stormy sea, cancers suddenly disappearing or going into remission is not something ‘miraculous’ or unheard of it. It does occur and many times, as with much in medicine, we can’t explain it with certainty. That lack of certainty leaves a gap conveniently shaped like a token.
By peddling to token-worship, we ignore and don’t build on those aspects which could really help us survive. Was there a particular regimen or diet that someone had, which actually aided them in their fight? Was the hull of this particular ship made of something different to all the other broken ships? We forget such questions if we keep peddling tokens. As I said, we are correct to look to survivors and ask what they did differently – but we must look as broadly as possible, not simply on the ear-rubbing (aka. Token pandering) they claim is the cause of their survival.
In this current case, there has been plenty of money and celebrity endorsement and media coverage to get the pretty young girl to the US, into Burzynski’s clinic. But what about funding proper science studies? What about treatment for many children who die everyday from easily preventable diseases? That money could be used in proper medical trials or at least be used to make young Billie’s final days the best she’s ever had.
Instead, the piss is literally taken out of her to ‘cure’ her cancer. A young girl is being poked and prodded with an unverified treatment, while she dies.
So the dangers are manifold in token-praising. Not only will we forsake possibly legitimate treatment – as in the many manslaughter cases where parents pray instead of medically treating their child, leading to an easily-preventable death; giving votive gifts instead of engineering better ships – but we would ignore these legitimate treatments’ efficacy even if we used them.
However unfortunate, being aware of the odds is the first step toward being more effective in beating them. We ignore information not only to our own detriment, but others, as well.
* The quoted parts are taken directly from Hecht’s Doubt: a History.
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