Lost Hope

By Ed Cara

There’s something about the death of a child that hits us in a particular way. Maybe it’s the feeling of perversion at seeing death come so early, unnaturally, or our hidden parental instincts kicking in high gear. In the case of 5-year-old Billie Bainbridge‘s untimely death at the hands of an aggressive tumor lodged in her brain last weekend though, there’s another feeling that should pop up from under there, a feeling of anger towards one Dr. Stanislaw Burzynski.

Because Billie’s story isn’t just about the terminal cancer that took less than a year since its diagnosis to take her life, it’s about the antics of Burzynski, a now Texas-based doctor who for over 30 years has peddled his particular brand of cancer treatment, antineoplaston therapy, as an experimental but pioneering cure-all for all sorts of otherwise incurable tumors. Though his supporters allege a smear campaign by the government to suppress his wondercure from the public, Burzynski’s spent the last several decades enrolling countless cancer patients at the end of their rope in so-called clinical trials (since he can’t legally treat anyone with his unproven antineoplastons) that the patients themselves pay for with little to show for it. While he champions his antineoplastons (his coined term for a group of peptides originally derived from the body itself) as a non-toxic solution to all form of cancers, former patients’ testimonials and the ongoing investigation by the Texas medical board have noted the use of off-label chemotherapy drugs during his treatment sessions, a mish-mash of drugs being thrown together without any precaution and at extremely high markups that leave his “patients” with a hole in their pocket anywhere from $100,000 to $200,000.

It was the drive by Billie’s family in the UK to raise funds for a visit to the Burzynski clinic that brought to light many of the unscrupulous actions of Burzynski, but as it turns out, there’s been a myriad of similar fundraising campaigns throughout the years to send children, husbands, brothers and wives to the Texas clinic in pursuit of one final chance to stave off disease and death, many of which have similarly ended just as Billie’s journey did. Not that any of the blame for their wild goose chase should be placed on the shoulders of cancer sufferers and their families; there’s no telling to what extent any of us would go to for the opportunity to save those we love from the grips of an incurable condition, no matter how low the chances, but that doesn’t excuse the actions of a rogue doctor who sells those families fake promise and optimism to turn a buck and generate publicity for his product. Billie’s death and the heartbreaking details of it on her fundraising site are another somber reminder that we still have so far to go in dealing with the complicated and multifaceted disease of cancer. It’s also a reminder that hope can come at a price that no one should be tricked into paying.

With the advent of a lawsuit by a former patient and the aforementioned attempt by Texas to once and for all revoke Burzynski’s medical license, perhaps the uncritical praising of this “pioneer” will finally turn on its head, and Stanislaw’ll be seen for what he really is: A snake oil salesman with a PhD and painted on coat of legitimacy.

UPDATES/EDIT: The former patient of Burzynski’s, Lola Quinlan of Jupiter, Fl, passed away May 17th.

The court case against Burzynski by the Texas medical board was indefinitely delayed again in April. No word as to its next scheduled hearing yet.

Catch Ed and his writings at his twitter, TheImprovateer.

Advertisements
This entry was posted in headline, opinion, Scepticism and tagged , , , , . Bookmark the permalink.

0 Responses to Lost Hope

  1. Ash Pryce says:

    Apparently, Laure (mentioned by Keir in another article) is getting better. sadly some are attributing this to Dr. Burzynski. Apparently if one eprson starts getting better it’s proof Burzynskis treatment works…. ignoring the massive death toll elsewhere 😦

  2. It is worth mentioning that Lola Quinlan (the patient in the court case0 has sadly passed away.

  3. Ed Cara says:

    Noted and updated on the article.

  4. Ric Schiff says:

    So let me get this straight. You ignore all other doctors in the world who are treating brain tumor patients with toxic treatments that their own Peer Review Articles show to have been repeatedly ineffective and non-curative so you can hammer Dr. Burzynski?

    Which doctor treating brain tumors right now do you exalt? Which ones do you feel are on the cutting edge of success and ethics?

    I would be fascinated to know….because its not Rodger Packer, or Finnaly, or Prados at UCSF. Those I know….and they torture children for a living. So which doctors are you happy with? Sure toxic chemotherapy cures 90% of childhood leukemia. Not pleasantly, but still pretty good if you have nothing else. But brain tumors…..who do you favor in that race?

    Not only does Dr. Burzynski treat terminally ill patients, but hundreds of them are alive and cured. What you’re missing is that ANYWHERE else…all of those patients would be dead.

    Patients have to pay for their own treatment? You’re right! Maybe you should ask the Oncologist that “advise” the insurance companies why patients have to take treatment which they know will not work in favor of Burzynski’s where they stand a pretty good chance (at least for brain tumors). I suspect that between the two of us, I’m the only one who has had to deal with raising money for patients who have failed treatments that NEVER had a chance of being curative. You think a $100,000 is a lot? Do you have any idea what one round of toxic (and useless) chemotherapy cost? Any idea what radio-oncologist charge for treatments using those big X-ray and Gamma-knife machines, secured behind their 3-foot concrete walls? My insurance spent $1,000,000 torturing my daughter to death….but would not give a penny towards the only potential cure that there was. Who do you think made out in that deal?

    You are worried about Dr. Burzynski profiteering from his patients? If insurance companies refuse to pay for the treatment, just who do you think is going to pay for it? Clinical trials are paid for by major pharmaceuticals that make enormous profits by selling their products to the very same doctors and hospitals running the clinical trails. Do you think that they are altruistic?

    The scary thing is that some reader might actually pass on Burzynski because you felt the need to write a one sided ridiculous article.

    Why don’t you try a comparison between Dr. Burzynski patients and any other oncologist treating brain tumors? You see, we all have had experience with both so the comparison is easy for us. We know who has no ethics and will lie for every dollar that they can get. Most importantly, we know that their patients are all dead. They never had a chance.

    Strangely enough, we the Burzynski patients who clearly have better information and experience than you, are willing to refer patients to the Burzynski clinic, help them raise money and fight for their lives. None of us get paid anything; in fact, it tends to be a lot of work.

    Go figure.

    By all means contact me.

    Ric Schiff
    Rschiff@pacbell.ne

  5. Lesmond says:

    It’s always puzzling when people think that if you’re critical of Burzynski then you must support pharmaceutical companies. I think they’re both full of shit and prefer to examine the objective evidence. Unfortunately, Burzynski hasn’t released any evidence beyond a string of conference abstracts and reviews. Shame.

    Also, Stan’s “ANPs” are very simple molecules which cost pennies to produce and he’s a multi-millionaire. Let’s just consider that when talking of the sums of money he charges his patients. “Antineoplastons” is just a rebranding of a bunch of simple chemicals that have existed in the medical canon since long before Stan grew hair on his balls. Don’t buy the line that he “discovered” anything.

  6. frozenwarnings says:

    Hi Ric,

    Not ignoring other doctors at all, it’s just that unlike you, we don’t think they are trying to kill children. Sometimes oncologists don’t know when to stop, just as sometimes patients don’t know when to stop, because some things are really hard to accept, especially where children are concerned. That has nothing to do with Burzynski. I admire all oncologists for doing a very difficult job in often harrowing circumstances. I don’t however exalt anyone. The mere fact that you accuse genuine oncologists of torturing children means you lose the argument right there. Totally irrational.

    If Burzynski, who by the way, isn’t an oncologist and shouldn’t be doling out chemotherapy in the first place, had actually cured hundreds of people with his “ANPs” which aren’t anything new as has been pointed out, then a real doctor/scientist would have published those results. He hasn’t published those results in 35 +years. Hundreds cured? Show me the evidence. You have none. All his fans say is talk to the patients. That is not good enough. I can find you hundreds of people who claim to have been cured by all sorts of dumb and dumber stuff, from drinking bleach to talking to aliens, doesn’t make it true.
    Patients should not be paying to take part in clinical trials. Patients should also not be paying for unproven treatments. All Burzynski has to do is publish his “amazing results” and the insurance companies will be falling over themselves to cover the costs.

    No-one has ever said that pharma companies are angels. You seem to forget that Burzynski owns a Pharma company or two himself, producing someone else’s drug. I notice he also promotes it as anti ageing cream. I mean, give me a break, if it walks like a duck…

    Odd isn’t it that Burzynski has managed to fund all those clinical trials and yet he can’t fund the definitive Phase 3? Please don’t give me the $300 million cost argument either, it’s baloney. He’s not developing a drug, he’s using off the shelf, cheap as chips simple chemicals. Too much scrutiny?

    It is simply not true that real medicine can’t cure brain tumours. Check it out:
    http://cancerhelp.cancerresearchuk.org/type/brain-tumour/treatment/statistics-and-outlook-for-brain-tumours#glioma

    Lastly, I really, really hope that people are put off ever going to Burzynski. No-one should be allowed to get away with taking money and precious time away from cancer patients.

    Not interested in contacting you, why would I? Burzynski can rid himself of critics by publishing his methods and results so that others can replicate it. Nothing else will do I’m afraid, that’s how science works.

    There are two scenarios to consider:
    1. Burzynski has found a cure for cancer. If true, then he is deliberately keeping that to himself so that he can make huge profits, and denying a cure to millions of desperately ill patients, in which case he is immoral and greedy.

    2. Burzynski hasn’t found a cure for cancer but he wants to keep that quiet by not publishing his results or collaborating with other scientists, because that would lead to him being found out and it would hurt his profit margins. That would make him immoral and greedy. This is where the big bets are lying right now.

  7. Lawrence says:

    @Ric – as a former patient of Dr. B, perhaps you could contact him and get the definitive answer as to why he has not published any of his work over the past 30 years.

    Also, you should ask him why anyone who has attempted to replicate his protocol has had to stop, due to the shear toxicity of the treatment.

    Good luck getting an answer.

  8. Ash Pryce says:

    Ric,

    sorry to take this down a notch with a ridiculous analogy but I find the ridiculous ones help hammer things home.

    You say as a aptient of Dr. B you are evidence his treatment works? Well, last time I had a chest infection I prayed to my MP3 player, a short while later I got better. I now know praying to MP3 players cures chest infections.

    The point, silly as it is, I am making, is that because you got or are better and you happened to use Dr. Bs treatment does not follow that it was his treatment that cured you because at this stage we have zero evidence his treatment works – much like praying to my iPod.

    Now *maybe* his treatment does work, if that is the case he shouldn’t be sitting on it for 30 years and charging people to take part in clinical trials.

  9. frozenwarnings says:

    “Why don’t you try a comparison between Dr. Burzynski patients and any other oncologist treating brain tumors?”

    Would love to do this. When will Burzynski publish so that it can happen?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s