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The Burzynski Clinic PDF Print E-mail
Swift
Written by Dr. Terry Simpson   

The Burzynski Clinic in Houston, Texas has been in the news lately – but not in a good way. They’re offering an experimental cancer therapy called “antineoplastons”.  The therapy costs patients thousands of dollars (not covered by insurance) and has not undergone randomized controlled trials to prove its efficacy over other treatments.

Ever since the discovery that mustard gas (an agent used in chemical warfare) was found to reduce lymphoma cells, the field of oncology was born.  This study of cancer is where you kill bad cells, and some good cells. Ultimately, the patient relies on the research in the field to have the most benefit with least toxicity.  Only, sometimes it doesn’t work out that way. Often the journey of the cancer patient is not a pleasant one, with nausea, vomiting, hair loss, lethargy, and the feeling that you have the flu.  Too often chemotherapy is like carpet bombing- you bomb everything and hope the good survives. When it doesn’t, the collateral damage can be a life – as it was with my brother who died after becoming septic from his first round of chemotherapy for lung cancer.

The holy grail of cancer chemotherapy has been to find the smart bomb that would kill only the cancer cells, or a way to turn the body’s immune system against cancer cells. In the United States hopeful agents that are ultimately paid for have to go through the same process- a trial by the National Cancer Institute (NCI), which happens in three phases:

 

Phase 1 trials – to determine toxicity of the agent.  Even the most promising discovery in the bench of a scientist can have toxicity in humans.  These are small trials, usually reserved for people who have not had remission from traditional treatments.

Phase 2 trials – once toxicity has been determined, the phase 2 is to determine if the agent works against cancer in people. Does it shrink the tumor at all is the question asked. There are lots of promising treatments in the lab that never make it past this trial because they just don’t work in humans.

Phase 3 trials - compare the new treatment to standard treatments. These are very large trials, hundreds of people. Sometimes they are stopped when early data shows either toxicity not seen in earlier trials, and happily some are stopped when they find it is of much more benefit than the therapy it was up against.

Phase 4 - looking at side effects or long term effects after the agent is on the market.

The Burzynski Clinic states they offer “innovative and cutting-edge personalized gene targeted cancer therapy. Customized for over 50 types of malignancies.”  This is all done and under a trial authorized by the Food and Drug Administration (FDA).  All that sounds great – but here is the rest of the story.

The antineoplastons did undergo Phase 1 and Phase 2 trials. In Phase 1 there were some side effects that were mild.  In Phase 2 trials of brain cancer patients there were some severe nervous system side effects. However, other investigators were not able to obtain the same results as reported by Burzynski.  Some results were seen in Japan, but not the same as Burzynski.  In 1991 the National Cancer Institute conducted trials and by 1995 only 9 people had enrolled. The FDA has not approved antineoplastons for the prevention or treatment of any disease.  The FDA did allow the Burzynski’s clinic to continue treating patients. No randomized trials have been approved, and part of this is because Burzynski chose to not go forward with them.

Recently, the “Burzynski Patient Support Group” threatened a 17-year-old blogger, Rhys Morgan when he questioned the validity of Burzynski’s claims.  Morgan’s wrath came about because of a money raising campaign for a patient. Morgan raised the ire because he doubted the claims that Burzynski’s antineoplastons could cure the tumor.

What remains for this skeptical physician is simply this: Burzynski refuses to work with government-sponsored researchers, to have his treatment evaluated. He charges tens if not hundreds of thousands of dollars for the treatment.  His supporters charge big Pharma doesn’t want him to succeed since cancer is big business. As far as conspiracy about big Pharma- well, seems like Burzynski, while he is making a lot, would make more if his antineoplastons worked and were sold by big Pharma than not.

It is horrible to have cancer, or a loved one with cancer. That disease has caused more people to seek out treatments that have not been tested than almost any other disease today.  

Physicians are trained in science – we want to see things go from the bench to randomized trials. We know things don’t always work out (look at Avastatin, works in the lab, but not in breast cancer) – and yet this is the system that provides a non-bias method of evaluating treatments. When someone says they alone have the answer, but the data cannot be reproduced by large numbers of physicians, or they refuse to work with them – it is every reason to shy away.  Is Burzynski a fraud, over charging a susceptible group of patients?  We won’t know unless his “treatments” are subjected to randomized trials.  

As a physician I applaud when an NCI trial is stopped because the agent tested is better than the agents on the market - and occasionally that happens. That has never happened with Burzynski’s antineoplastons.

 

Terry Simpson started out life as a basic scientist and decided he preferred people to petri dishes. He is a surgeon in Phoenix, authored several books, and has his musings on YourDoctorsOrders.com (among other blogs)  His view of the world became altered in the 1980's in conversations with of a  patient who was undergoing treatment in Seattle - Carl Sagan.

 

[Editor's note: Article edited to correct previous errors. Thanks to everyone for bringing this to my attention]

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Error in above article
written by endless_psych, December 01, 2011
Just a wee note to say you have conflated two separate fund raising campaigns for Burzynski listed above. The Hope for Laura fund and the Billie Butterfly fund.

The recent article in the observer related to the Billy Butterfly fund whereas the Hope For Laura fund prompted the initial surge of interest back in May due (in part) to this post and the comedian Rufus Hound supporting the campaign. http://www.thetwentyfirstfloor.com/?p=2375 The age of the child is also out by two years being four and not six.

As an aside I find the use of gendered language quite shocking in that it refers to her "father" being unable to pay for treatments. Surely we live in more enlightened times and we should acknowledge it is both her parents who have been persuaded to give up their life savings and pay through the nose for Burzynskis false hope.
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Also on legal threats
written by endless_psych, December 01, 2011
It is also worth knowing that the clinic issued a press statement that suggests they may yet be exploring litigation against UK bloggers.
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Just one more thing...
written by endless_psych, December 01, 2011
I suppose I may as well plug these ongoing and potential campaigns also: A petition to try and get the clinic to release it's results in peer reviewed journals:http://www.thetwentyfirstfloor.com/?p=3148

and a potential idea for skeptics to help those harmed by quackery: http://www.thetwentyfirstfloor.com/?p=3184

Much obliged if anyone can contribute to those.
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errata
written by LovleAnjel, December 01, 2011
Actually, the Laura of Hope for Laura is 24 years old, and neither she nor her fiancee can afford the quack treatment.
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...
written by krelnik, December 01, 2011
There has been quite a lot of blog and social media activity regarding Burzynski over the last two weeks or so. Even if you don't use Twitter, you can use this Twitter search to follow along in the action as it occurs.

A few major locations of skeptic commentary are Andy Lewis' Quackometer blog and the blog of Rhys Morgan, both of whom were threatened by Burzynski representatives.

Josephine Jones has been keeping a master list of Burzynski blog posts organized by topic and she has other material on her blog of interest too, including suggestions of what skeptics can do.

On the technology side, I helped organize an effort using this list of links to encourage skeptics to vote on Burzynski's reputation in the tool Web of Trust which I have previously blogged about here. This resulted in Burzyski's sites receiving a warning screen from that service.
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Errors in post
written by zenbuffy, December 01, 2011
Please do try to correct the errors in this post. There are currently a number of people trying to raise money for treatment with Burzynski in Ireland, the UK, the US, and likely elsewhere too, and their cases are quite different. As has been pointed out, this seems to be a mix-up between Billie Bainbridge (Billie Butterfly Fund) and Laura Hymas (Hope for Laura).
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Ethics of being a physician 101
written by tlsimpson, December 02, 2011
The information regarding the specific patient involved came from a newspaper and that may have been incorrect, that is far from the point of the blog.
As a physician we have ethical obligations, and expectations to our patients. One of them being autonomy – people are truly free to choose their treatment, but must have the information that is required to make a choice.
Another key tenet for physicians is nonmaleficence – to not use our skill and knowledge to harm a patient. Deliberate harm would be to put a patient at risk for a treatment we know doesn’t exist. Risk associated with procedure does not count as “doing harm” unless the procedure has no hope of benefit.
Innovation is different than research. In surgery we innovate every day- no two operations are the same, and sometimes we do operations that we have never done before. That requires an informed consent with a patient- and an open and honest discussion.

That is different than research. In research, which is the systematic acquisition of data for the purpose of generalizable inference – this requires equipoise. Equipoise requires that even though we believe our treatment might be best, we provide different treatment arms so that it can be tested. Clinical equipoise is satisfied if there is an uncertainty in the medical community regarding the therapy (antineoplastons) and this allows the clinical investigator to do a trial until there is statistical evidence to convince the medical community about this treatment.
Because Burzynski has not satisfied the medical community with equipoise, we question the treatment- and can only be convinced by a phase 3 trial.

We cannot compel Burzynski to release his data- but insurance companies won’t pay for it until it passes through our standard method. Burzynski may be the equivalent of Uri Geller- another who didn’t want the light of day to shine on his methods.
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...
written by endless_psych, December 02, 2011
I am well aware that is not the point of the blog. However the blog contains a factual error and this should be corrected.

As one of the grassroots bloggers who (along with zenbuffy) originally brought Burzynski back under scrutiny I would say it is very important that we ensure our reporting of this is factually correct. Thus the slightly defensive tone of the opening sentence above disappoints slightly. The error IMO should be corrected.
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written by Gorskon, December 02, 2011
Anyone interested in a detailed deconstruction of antineoplastons and the evidence the Burzynski uses to claim antineoplastons work, check this out:

http://www.sciencebasedmedicine.org/index.php/stanislaw-burzynski-bad-medicine-a-bad-movie/

I know it's crass self-promotion, but what is blogging for, if not that? :-)
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written by zoeyjordan, December 02, 2011
To quote your article Dr. Simpson:

"Burzynski refuses to work with government-sponsored researchers, to have his treatment evaluated. He charges tens if not hundreds of thousands of dollars for the treatment. His supporters charge big Pharma doesn’t want him to succeed since cancer is big business..."

I would argue that Burzynski is well versed in the concept that cancer is big business. He's charging thousands of dollars to people who are faced with life threatening illness and the emotional devastation that they suffer through. If his trials are legitimate, and offer promise and scientific discovery, why in the world, as an ethical physician, would he refuse legitimate evaluation of his proposed treatment methods?

To quote you again:
"Is Burzynski a fraud, over charging a susceptible group of patients? We won’t know unless his “treatments” are subjected to randomized trials..." - I don't know what else you would call a man such as this, other than a fraud. And that is where people's outrage should lie - so many cancer patients quite possibly being subjected to useless treatments, all the while, their cancer may continue to attack their bodies.

I appreciate your insight on the Burzynski Clinic and its questionable methods. It will be interesting to see if you also receive the same scrutiny as the UK blogger.

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Better way to see how this played out on Twitter
written by krelnik, December 03, 2011
I think my Twitter swearch link in my comment above broke somehow, it should be a search for #Burzynski.

Little matter, because @JoBrodie has created a much better way to observe how this whole Burzynski story played out via skeptics interacting on Twitter. I encourage Twitter skeptics to click that link and you can see exactly how Twitter is used to rally the support of the skeptic community and disseminate news.
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Medical Ethics
written by tlsimpson, December 03, 2011
I did a video review of this. You can find that at my site here http://budurl.com/badethics
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