The Secret of Burzynskis “success”?

By Keir Liddle

Dr Burzynskis Antineoplasteon (ANP) therapy has a tragically impressive list of failures but he appears to have a few success stories (even after you account for those who didn’t actually survive). But do these prove the effectiveness of ANPs as a treatment for cancer or is there perhaps something else that could explain the lucky few who his treatment appears to help?

The Burzynski clinic provides information for new patientsabout what treatment involves and what drugs patients will be taking alongside ANP treatment. This document explains how ANPs Atengenal (A10) and Astugenal (AS2-1) are to be delivered via an infusion pump. It details how ANP should be stored and shipped, they should be at a controlled temperature within the storage range (15-30 degrees Celsius or 59-86 degrees Fahrenheit) and tells the patients nurses will demonstrate the process the patients should use themselves for dressing changes, flushing, disconnecting, and reconnecting and medication administration via Hickman line.

Among other details the information provided to patients also details the other kinds of drugs they may also be prescribed alongside their course of ANP: anticonvulsants and steroids. Which are fairly standard types of drug to prescribe someone with a brain tumour, alongside treatment, as they aid recovery and assist with common side effects.

Anticonvulsants and steroids are routinely prescribed to combat the side effects of brain tumours including intercranial swelling fluid leaking into surrounding brain areas causing edema (pressure that disrupts the function of surrounding brain regions). These drugs are used to deal with side effects as diverse as grand mal seizures, language difficulties and other cognitive impairments.

However certain steroids used in cancer patients can have another surprising result, one that has implications when attempting to determine if Dr Burzynskis patients response on Magnetic Resonance Imaging (MRI) scans.

Dexamethasone, a steroid commonly used to combat the symptoms of tumour growth and brain swelling, is the steroid listed in Burzynskis patient information as being administered alongside ANP. Dexamethasone has become the steroid of choice in brain oedema due to its minimal salt retention and its relative potency when compared with other steroids.

A number of studies have revealed that prescription of dexamethasone has interesting implications when it comes to determining tumour progression or remission using MRI scans. As it can make it appear as if tumours are shrinking, or indeed vanishing, when they are not.

In a case reported in the Journal of Neurology, Neurosurgery and Psychiatry in 1997 a 56 year old man was treated for a left frontoparietal mass with oedema (brain tumour with swelling) with  2 mg dexamethasone three times daily. This treatment resulted in a resolution of his symptoms and after the patients brain was scanned and the oedema and the tumour had apparently disappeared (even with the use of contrast enhancement) the patient was sent home. The patient was scheduled for a biopsy three weeks later and was readmitted and rescanned. Having been removed from steroid treatment the tumour was again visible on the scan and massive brain swelling has occurred. The histology of the tumour showed it was a glioblastoma multiforme. He was admitted to intensive care and tragically he died within a few hours.

The doctors concluded that:

"You cannot be sure what the lesion is unless you have tissue for histology. It also shows that steroids can reduce the peritumorous oedema and apparent tumour size so that the tumour effectively disappears on the scans."

A similar case is reported in the Journal of Clinical Neuroscience where a 59-year-old man presented with a history of headache and confusion. A CT scan of the brain showed a tumour on the left parietal lobe adjacent to the posterior horn of the lateral ventricle. Again the patient received dexamethasone (16 mg/day), again the enhancing lesion seen on CT scan faded following dexamethasone therapy and again teh subsequent biopsy revealed the tumour to be a glioblastoma multiforme. The study authors note that:

"Various intrinsic cerebral lesions have been noted to disappear on CT imaging after the administration of corticosteriods,1 but it is less common for a glioma to do so.”

They further conclude that:

"This report reiterates the potential pitfall of presumptive diagnosis and highlights the importance of MRI guided biopsy in patients where a tumor fades on CT imaging after corticosteroid therapy. We also highlight the need to clarify the actions of corticosteroids on specific tumor types."

Again highlighting that one cannot rely on MRI scans as reliable proof of remission in cases of brain cancer other factors, such as the impact of steroid treatment, may make these scans less than fully reliable.

A paper published as recently as July of this year further highlights the diagnostic dilemma faced by physicians and oncologists in interpreting MRI results where the steroids that are prescribed may give rise to a situation where an MRI gives the false impression that a patients tumour is shrinking or has even vanished when it hasn’t.

Could Burzynskis much touted MRI scans showing dramatic improvement in tumour size, and indeed vanishing tumours, be simply down to the effects of Dexamethasone or could he have stumbled upon dexamethasone as an as of yet undiscovered effective treatment for brain stem cancers?

Research published in the Journal of Clinical Neuroscience throws cold water on the second interpretation as the authors undertook a search of the literature and found:

"only three other similar cases of rapidly vanishing glioblastomas after steroid treatment [4] and [5] (Table 1). All three cases were histologically proven glioblastoma multiforme and were given high doses of dexamethasone over a few weeks. Serial imaging performed within a few weeks of commencement of steroids showed a significant degree of resolution of the tumor

From the review, the daily dexamethasone dose ranged from 6 mg to 16 mg per day. The recurrence of the tumor typically was very aggressive and occurred within 1–4 weeks from the time of disappearance.

The glioblastomas that vanish rapidly are frequently multicentric with a predilection for the corpus callosum and are associated with rapid clinical deterioration and demise of the patient.”

The authors conclude that despite indications from MRI scans the prognosis of patients on high dose Dexamethasone remains poor and deterioration is often rapid.

It seems tragically plausible that Dr Burzynskis reported success and tumour reductions are nothing more miraculous than the clinically understood and scientifically reported side effects of steroid treatment. This might explain why so many family and patient blogs happily report successful treatment before going on to report rapid and unexpected deterioration.

Whether Dr Burzynski is aware of the effects and implications of prescribing high dose dexamethasone in determining tumour progression remains unknown. If he is unaware this implies nothing more than incompetence on his part but if he is aware it implies something much more sinister: that he is perhaps knowingly misleading his patients.

Whatever the truth of the matter it will remain unknown until the day Dr Burzynski decides to properly record and publish his results and submit them to the scrutiny of medical science.

Though given he has steadfastly avoided doing so for over 35 years I wouldn’t advise anyone hold their breath.

The Secret of Burzynskis “success”?

By Keir Liddle

Dr Burzynskis Antineoplasteon (ANP) therapy has a tragically impressive list of failures but he appears to have a few success stories (even after you account for those who didn’t actually survive). But do these prove the effectiveness of ANPs as a treatment for cancer or is there perhaps something else that could explain the lucky few who his treatment appears to help?

The Burzynski clinic provides information for new patientsabout what treatment involves and what drugs patients will be taking alongside ANP treatment. This document explains how ANPs Atengenal (A10) and Astugenal (AS2-1) are to be delivered via an infusion pump. It details how ANP should be stored and shipped, they should be at a controlled temperature within the storage range (15-30 degrees Celsius or 59-86 degrees Fahrenheit) and tells the patients nurses will demonstrate the process the patients should use themselves for dressing changes, flushing, disconnecting, and reconnecting and medication administration via Hickman line.

Among other details the information provided to patients also details the other kinds of drugs they may also be prescribed alongside their course of ANP: anticonvulsants and steroids. Which are fairly standard types of drug to prescribe someone with a brain tumour, alongside treatment, as they aid recovery and assist with common side effects.

Anticonvulsants and steroids are routinely prescribed to combat the side effects of brain tumours including intercranial swelling fluid leaking into surrounding brain areas causing edema (pressure that disrupts the function of surrounding brain regions). These drugs are used to deal with side effects as diverse as grand mal seizures, language difficulties and other cognitive impairments.

However certain steroids used in cancer patients can have another surprising result, one that has implications when attempting to determine if Dr Burzynskis patients response on Magnetic Resonance Imaging (MRI) scans.

Dexamethasone, a steroid commonly used to combat the symptoms of tumour growth and brain swelling, is the steroid listed in Burzynskis patient information as being administered alongside ANP. Dexamethasone has become the steroid of choice in brain oedema due to its minimal salt retention and its relative potency when compared with other steroids.

A number of studies have revealed that prescription of dexamethasone has interesting implications when it comes to determining tumour progression or remission using MRI scans. As it can make it appear as if tumours are shrinking, or indeed vanishing, when they are not.

In a case reported in the Journal of Neurology, Neurosurgery and Psychiatry in 1997 a 56 year old man was treated for a left frontoparietal mass with oedema (brain tumour with swelling) with  2 mg dexamethasone three times daily. This treatment resulted in a resolution of his symptoms and after the patients brain was scanned and the oedema and the tumour had apparently disappeared (even with the use of contrast enhancement) the patient was sent home. The patient was scheduled for a biopsy three weeks later and was readmitted and rescanned. Having been removed from steroid treatment the tumour was again visible on the scan and massive brain swelling has occurred. The histology of the tumour showed it was a glioblastoma multiforme. He was admitted to intensive care and tragically he died within a few hours.

The doctors concluded that:

"You cannot be sure what the lesion is unless you have tissue for histology. It also shows that steroids can reduce the peritumorous oedema and apparent tumour size so that the tumour effectively disappears on the scans."

A similar case is reported in the Journal of Clinical Neuroscience where a 59-year-old man presented with a history of headache and confusion. A CT scan of the brain showed a tumour on the left parietal lobe adjacent to the posterior horn of the lateral ventricle. Again the patient received dexamethasone (16 mg/day), again the enhancing lesion seen on CT scan faded following dexamethasone therapy and again teh subsequent biopsy revealed the tumour to be a glioblastoma multiforme. The study authors note that:

"Various intrinsic cerebral lesions have been noted to disappear on CT imaging after the administration of corticosteriods,1 but it is less common for a glioma to do so.”

They further conclude that:

"This report reiterates the potential pitfall of presumptive diagnosis and highlights the importance of MRI guided biopsy in patients where a tumor fades on CT imaging after corticosteroid therapy. We also highlight the need to clarify the actions of corticosteroids on specific tumor types."

Again highlighting that one cannot rely on MRI scans as reliable proof of remission in cases of brain cancer other factors, such as the impact of steroid treatment, may make these scans less than fully reliable.

A paper published as recently as July of this year further highlights the diagnostic dilemma faced by physicians and oncologists in interpreting MRI results where the steroids that are prescribed may give rise to a situation where an MRI gives the false impression that a patients tumour is shrinking or has even vanished when it hasn’t.

Could Burzynskis much touted MRI scans showing dramatic improvement in tumour size, and indeed vanishing tumours, be simply down to the effects of Dexamethasone or could he have stumbled upon dexamethasone as an as of yet undiscovered effective treatment for brain stem cancers?

Research published in the Journal of Clinical Neuroscience throws cold water on the second interpretation as the authors undertook a search of the literature and found:

"only three other similar cases of rapidly vanishing glioblastomas after steroid treatment [4] and [5] (Table 1). All three cases were histologically proven glioblastoma multiforme and were given high doses of dexamethasone over a few weeks. Serial imaging performed within a few weeks of commencement of steroids showed a significant degree of resolution of the tumor

From the review, the daily dexamethasone dose ranged from 6 mg to 16 mg per day. The recurrence of the tumor typically was very aggressive and occurred within 1–4 weeks from the time of disappearance.

The glioblastomas that vanish rapidly are frequently multicentric with a predilection for the corpus callosum and are associated with rapid clinical deterioration and demise of the patient.”

The authors conclude that despite indications from MRI scans the prognosis of patients on high dose Dexamethasone remains poor and deterioration is often rapid.

It seems tragically plausible that Dr Burzynskis reported success and tumour reductions are nothing more miraculous than the clinically understood and scientifically reported side effects of steroid treatment. This might explain why so many family and patient blogs happily report successful treatment before going on to report rapid and unexpected deterioration.

Whether Dr Burzynski is aware of the effects and implications of prescribing high dose dexamethasone in determining tumour progression remains unknown. If he is unaware this implies nothing more than incompetence on his part but if he is aware it implies something much more sinister: that he is perhaps knowingly misleading his patients.

Whatever the truth of the matter it will remain unknown until the day Dr Burzynski decides to properly record and publish his results and submit them to the scrutiny of medical science.

Though given he has steadfastly avoided doing so for over 35 years I wouldn’t advise anyone hold their breath.

Balancing Act

By Jennifer Keane

What would you do if someone claimed that, because of “geopathic stress”, moving your bed could be the key to avoiding cancer?

Well, if you’re the Irish Independent, you give that someone the most prominent picture and article space in a section about cancer prevention and treatment, with the bold headline “The truth about avoiding cancer”.

The man in the picture holding the magical pieces of wire is Brendan Murphy, and the article is little more than an advertising piece for his company, Positive Energy. Though the piece starts promisingly by pointing out that geopathic stress is “an area that is still open to debate”, sadly, it fails to deliver that debate. Instead, the reader is treated to a number of claims with a dearth of supporting evidence.

  • By ‘dousing’ (an ancient practice of using two wires to find underground waterways) Brendan can identify where water runs under a house and has found a strong correlation between that and illness.
  • If you’re constantly waking tired and unrefreshed it could be a sign that you’re sleeping over geopathic stress.
  • There’s a growing interest in how geopathic stress or ‘sick building syndrome’ affects health, with planners in several countries now considering geopathic stress lines when building houses. 
  • On the basis that electromagnetic waves affect the body’s ability to restore itself during sleep, Brendan advises also keeping mobile phones and electricity boxes an arm’s length from the bed - as well as keeping WiFI switched off at night.

The piece neither provides, nor suggests where you might find evidence to support the claims about Murphy’s dousing abilities (or anybody’s ability to accurately douse), or why electricity boxes and wifi might prevent your body from “restoring itself”, and if you found yourself wondering what planners are interested in geopathic stress lines, and how they could possible hope to avoid them all if they are as prevalent as claimed, you are not alone. A quick search through any academic database will cure what ails you - geopathic stress turning up only in low quality journals and those that focus on complementary and alternative therapies. Whatever strong correlations Murphy claims to have found between illnesses and these imaginary stress lines, it certainly hasn’t been documented in any research papers.

Continuing to largely ignore the seemingly fictional nature of the piece, the author concludes that there has been “little investigation into the area, but if something as small as changing where you sleep, or moving your phone, might impact on your health it could be worth thinking about.” A statement of equal legitimacy might be “there has been little investigation into the area of alien-induced head colds, but if something as small as wearing these protective alien UFO blocking nose plugs might impact on your health, it could be worth thinking about”.

Further down the page, nestled between largely sensible articles from an Irish Cancer Society representative and a dietician, Dr. Aileen O’Kane, now an Ayurvedic practitioner tells us that “if the digestive system is overtaxed the immune system is compromised and can’t gobble up the cancer cells that the body is always producing, the way it normally would”, and in a nod to the thoroughly debunked “alkaline diet” craze, that ”Many people who have cancer have excess acid in the body.” The conclusion, highlighted for you in a section of its own, is to “keep acidic foods to a minimum”. O’Kane believes that any illness, including cancer, is the body’s warning sign that our lives are out of balance.

Our lives aren’t the only things suffering from a lack of balance - increasingly, in the name of journalistic balance, legitimate and accurate information is overshadowed by misleading quotes and scaremongering by those brought in to “balance” the piece. It’s one thing to include dissenting opinions when discussing the latest trend in fashionable shoes, or whether some movie lives up to the hype, but medical science isn’t about which opinion is more popular or compelling, it’s about evidence.

These articles might pay lip service to the lack of evidence by saying things like “still up for debate” or “Dr. Someone  believes that”, but placing these articles next to pieces by legitimate medical professionals lends them a degree of credibility which they often don’t deserve. When articles like these are published, the trust that is placed in well-respected and nationally read newspapers such as The Irish Independent is extended to the people who make claims about alternative therapies. They are claims that shouldn’t be trusted, claims for which they should have to provide evidence - but the mere fact of publication often means they don’t have to.

Every time an author discusses serious medical conditions like cancer, and decides that appearing to be “neutral” is more important than reporting accurately, they perpetuate the idea that alternative and unproven therapies are as legitimate as proven ones, and that when it comes to treating these conditions, everyone’s opinion is equal, even if those opinions come with no pertinent training, no supporting evidence, or an eye-watering price tag. Encouraging people to “think about” these alleged cancer causes and prevention methods essentially encourages baseless worry, reaching down to a fear of terminal illness and death that we all possess, and as no effort is made to draw a distinction between the sensible advice (eat a healthy, varied diet) and the more ridiculous advice (magical invisible lines under your bed), the overall impression one is left with is that each of these “truths” about cancer prevention are equally valid. Alternative therapies are alternative because they have either not been proved to work, or have been proven not to work, and including these therapies, simply so that you can call your piece balanced is irresponsible to the point of dangerous - a lesson which The Independent sorely needs to learn.

CANCERactive Concerns

By Josephine Jones

I have some strong concerns about CANCERactive. I think some of the information on their website is inaccurate. Some is misleading. Some is dangerously irresponsible.

But who are CANCERactive?

In their own words,

CANCERactive is Britain´s Number 1 holistic cancer charity. (Some people call us an Integrative, or Integrated Cancer Charity).

They pride themselves on being the ‘Patient’s Champion’ and boast that they take no remuneration for the work that they do. They also point out that they

do not receive funds directly or indirectly from large corporations such as pharmaceutical companies, and so this site is truly independent with no vested interests and based on the research that is available, interpreted in a balanced way

They even claim to pride themselves on being evidence-based.

Laudable though this appears, there are some big problems here. I believe there’s an implication that those who dismiss alternative cancer treatments are doing so because they have vested interests. I believe there’s an implication that CANCERactive look carefully at all the available research while reputable medical professionals and other cancer charities only look at the research that suits them.

This conspiracy theory can drive a wedge between cancer patients and their doctors, leading them to ignore good advice, even to deny themselves essential treatment. It can drive a wedge between patients and their loved ones, at the worst possible time. It can allow the most vulnerable people to simply believe what they want to believe, spending money they don’t have on treatments that don’t work.

But I must choose my words very carefully.

CANCERactive founder, Chris Woollams wrote here

Professor David Colquhoun and his inaccuracy, lack of research, lack of attention to detail and defamatory comments of both Chris Woollams and the charity CANCERactive has prompted legal action against him and his DC’s Improbable Science blog.

This is unfortunate.

I wouldn’t say that CANCERactive are pushing dangerous quackery at the desperately ill. After all, they do state, in red:

We are an information-only site presenting you with information that is already available in the public domain; we do not give advice even though our patrons and advisors number Professors, Doctors and experts in many fields. The provision of information on the website does not constitute our recommendation or endorsement of that information or its provider.

Of course the site doesn’t advertise cancer treatments. Nor does it give advice about cancer treatments as part of any form of advertising. That would be against the law. (Incidentally, Chris Woollams isn’t a fan of the Cancer Act.)

So, there are no adverts on the CANCERactive site. They just prominently mention a couple of books by Chris Woollams and also prominently link to the Natural Selection shop. This sells a wide range of ‘health’ products, apparently chosen and used by a selection team including Chris Woollams. I must point out here that Chris Woollams is not an employee or a director of the shop, nor does he take any remuneration from it.

But what information on the CANCERactive site is misleading, inaccurate or dangerously irresponsible..?

It’s hard to know where to begin.

This is what they say about Dr Burzysnki and antineoplastons:

His work - which is non-toxic - with brain tumour patients and those with other cancers produced results that beat the statistics seen for standard radiotherapy and chemotherapy treatment.

That is simply untrue.

Here is what CANCERactive say about Gerson Therapy:

The basic idea of the Therapy is to stimulate the body´s own immune defences to do what they normally do in a healthy body, whilst readjusting the balance of the molecules and atoms within the cells, returning them to levels normally found in healthy cells.

It doesn’t really matter what the ‘basic idea’ is, if that idea is based on imaginative pseudoscientific drivel.

Once both parts of this Therapy are fully established the theory is that a diseased body will be restored to full health. There is no doubt that this therapy has had notable successes, especially given that patients have often tried and failed with all available orthodox treatments first.

There is no reliable evidence that this therapy has had any successes, notable or otherwise.

In the case of cancer, diseased cells have been known to liquefy, which in itself creates a further problem. The process of breaking down tumours can be so effective that large amounts of toxins are released by the diseased cells into the blood stream. However, the largest detoxification organ, namely the liver, is often seriously impaired when cancer is in the body and so it needs to be cleansed and stimulated to deal with the extreme levels of toxins.

More pseudoscience. More wishful thinking. Gerson Therapy consists of a strict diet (with a very heavy emphasis on ‘juicing’) and up to five coffee enemas a day. This doesn’t cure cancer, nor does it ‘cleanse’ or ‘stimulate’ the liver.

I could continue. Visit the site yourself. Look at the information they give on the idea of homeopathy as a cancer treatment or the theory that cancer is caused by an excess of Candida albicans and may be cured with sodium bicarbonate. More dangerous, irresponsible, pseudoscientific nonsense.

And if you thought that was bad, I’ve not even started on the list of Cancer treatment centres and clinics discussed here.

Naturally, there’s a disclaimer (on this page):

We want to make it absolutely clear, up front, that we do not differentiate between them, nor endorse them; we do not intend to ´promote´ any of them - we seek merely to INFORM. We aim to treat every one of these equally and fairly, be they alternative or orthodox.

CANCERactive are unintentionally promoting some very dubious clinics.

These include the Raphael Medical Centre - a residential clinic in Kent, based on the anthroposophic image of man. They treat cancer with mistletoe.

And before you call me narrow minded for doubting the efficacy of mistletoe for cancer, please read the systematic review.

In addition to several other unproven treatments, mistletoe therapy is also used by the Klinik St Georg, the Hospital Dr Herzog and the Parascelcus Klinik, all listed by CANCERactive. Some of these places even carry out holistic dentistry, in the belief that teeth have energy connections to different organs all over the body.

American clinics listed by CANCERactive include, naturally, the much blogged Burzynski Clinic, the Gerson Institute and the Oasis of Hope hospital in Mexico, which provides a range of dubious treatments, including laetrile. There isn’t any evidence that laetrile is an effective cancer treatment. Furthermore, laetrile contains cyanide, which means that the side effects can be severe, even leading to death.

Given the existence of the Cancer Act, you might be surprised at how much alternative cancer treatment is available in the United Kingdom, again, listed for our convenience by CANCERactive. Just to be clear, I don’t mean complementary therapies such as massage, which may help patients relax and help them cope better with symptoms and side effects of conventional treatment. I mean things like intravenous vitamin C - used by CANCERactive’s expert Dr Andre Young-Snell at his Vision of Hope Clinic in Brighton. And things like Carctol - a herbal mixture (not a licensed medicine) which is recommended by Dr Rosy Daniel, who also happens to be one of CANCERactive’s experts.

There is no reliable evidence to support the use of such treatments for cancer. And yet it’s perfectly understandable that given a stark diagnosis, people will grasp at straws. If there is the tiniest glimmer of hope, desperate parents would do anything to save their child. It is crucial that difficult decisions about cancer treatment are made based on good, accurate information, not on wishful thinking.

False hope can be very cruel indeed.

Related articles

Bad advice about cancer from ICON / canceractive David Colquhoun, DC’s Improbable Science (currently offline), 10/09/06

There’s no conspiracy – sometimes it just doesn’t work Kat Arney, Science Update blog, Cancer Research UK, 06/07/11

Hope or false hope? Kat Arney, Science Update blog, Cancer Research UK, 25/11/11

Burzynski and Patient Choice Jennifer Keane, And another thing…, 03/12/12

The hope that holds desperate parents to ransom Jan Moir, MailOnline, 30/06/12

Bad advice about cancer from icon / CANCERactive Chris Woollams, Junk Science?, 07/07/12

The Confusing Case of the “Cancer Active” Charity jdc, Stuff and Nonsense, 08/07/12

Cancer “cures” Guy Chapman, Guy Chapman’s Blahg, 11/07/12

Skeptic News: Alternative therapy kills

20120630-180351.jpgIn Perth, Australia, an alternative treatment offered for cancer has killed four patients.

Deputy State Coroner Evelyn Vicker investigated the deaths of Sandra McCarty, Pia Bosso, Sandra Kokalis, Deborah Gruber, and Carmelo Vinciullo. Four cancer patient whoall undertook an alternative cancer therapy at Kathi Preston Memorial Health Centre – which operated a “clinic” out of a Dr Boyd’s home in 2005.

The treatment, invented by Austrian doctor Hellfried Sartori involved an IV High pH Cancer Therapy, using a range of substances including caesium, the industrial solvent DMSO, and laetrile – all of which are potentially toxic.

Sartori hid his criminal record in order to practice in Australia after losing his medical license in several US states for previous involvement in AIDS and cancer cure scams.

Sartori told the inquest he believed that it was treatment the patients received under proper medical supervision that killed them.

Sartori has failed to save at least 24 patients in Australia alone and may faces charges.

ANP: Not gene targeted. Almost certainly not curative.

By Lightbluesquare, edited by Josephine Jones

This post concerns the implications that ‘antineoplastons’ are ‘gene targeted drugs’. Something which is not only untrue, but I believe is specifically designed to mislead potential patients into thinking they will receive state of the art, targeted drug treatments with little or no toxicity. In reality, they are likely to be receiving a very old, not at all ‘gene-targeted’ drug by the popularly accepted definition of the term. While this may or may not be of therapeutic benefit, it does carry considerable risk.

Firstly it is important to understand what a gene targeted drug actually is, so I will use an example. A type of leukaemia, called chronic myeloid leukaemia (CML) was until the late 1990s almost entirely incurable, with a dismal five year survival rate of around 10%. This particular type of leukaemia is caused by something called a fusion gene (or chromosomal translocation), where two bits of DNA that are normally supposed to be separate, actually fuse together causing the normal functions of these two genes to be disrupted. In the case of CML, the gene is called the Philadelphia chromosome where two genes called BCR and ABL (a protein called a tyrosine kinase) join together to cause BCR/ABL.  This turns the normally inactive ABL on and results in leukaemia.

BCR/ABL was discovered by Dr Janet Rowley in the 1970s, a truly inspiring woman and scientist and for many years, CML patients were still succumbing to their illness. However, in the late 1990s, a drug company research group from Novartis in combination with Dr Brian Druker, and groups from elsewhere in the US, Italy and the UK specifically designed a drug which would target ABL and turn it off again, stopping the disease in its tracks. This single drug transformed the five year survival rate for CML from less than 10% to over 95%. The phase III trial carried out in the year 2000 randomised patients onto conventional treatment containing a range of chemotherapy agents or Imatinib, and the results were so staggering in favour of Imatinib, the trial was finished early for ethical reasons and all patients in the trial were treated with Imatinib. In 2001, the drug was approved by the FDA for treatment of CML (shortly followed by other countries), and holds the record for the quickest ever approval of a drug by the FDA, less than five years from discovery to widespread approval for CML patients.

Imatinib is not only a potent example of a truly targeted drug (although it must be mentioned that it does have some residual effect on other tyrosine kinase proteins such as KIT, but this is a different and complex story) with few associated side effects, but a lesson to the entire medical and scientific community in how to identify the root cause of a disease as Dr Rowley did in 1973, collaborate extensively to develop a targeted drug, test the drug quickly and efficiently and get it helping cancer patients as soon as possible.

So, onto Burzynski. Others have written about his ‘antineoplastons’, notably David Gorski with an excellent critical appraisal, summed up perfectly by the observation that what Burzynski calls antineoplastons are nothing more than the byproducts of the body’s metabolism of the orphan drug sodium phenylbutyrate. I would like to expand a little more on what antineoplastons ‘might’ do theoretically, and why I feel that even if they do have any action against cancers, there are better alternatives now available.  Burzynski calls his drugs ‘antineoplastons’, but essentially, we know that a lot of the time, he gives ‘antineoplastons’ to patients by using a recognised drug called sodium phenylbutyrate. Sodium phenylbutyrate (PB) is converted to phenylacetate (PA) and phenylacetylglutamate (PAG) by the liver and kidneys (along with a few other chemicals summarised on the Burzynski website), so although these chemicals may have slightly different effects, we can presume that treatment with PB will result in ‘antineoplastons’ being in the bloodstream. It is a little similar to giving someone a cup of tea or giving them the tea bag and some hot water to make their own tea. Either way, they will end up with a cup of tea, albeit the strength of the tea might be slightly different.

Burzynski is not the only one using antineoplastons, or the pro-drug PB. PB is approved for some other conditions such as urea cycle disorder (again summarised perfectly by David Gorski) and has been trialled in other cancer types. So what do other scientists and doctors say about it?

In a 2001 study by Gilbert et al, 28 patients with a range of solid tumours were treated with PB. Notably the paper states ‘no patient had a partial or complete response’. The paper also details side effects, particularly at the higher PB doses used, including extreme fatigue and in one case, severe neurological toxicity. Supporters of the Burzynski Clinic (including the Burzynski Patient Group, recommended by the clinic to patients) believe that the treatment is non-toxic.  This is despite patient experiences of severe hypokalaemia (low potassium), hypernatraemia (high sodium), seizures, fatigue and kidney failure. All of these can be life threatening and in the case of the kidney failure, would appear to be the cause of death in one paediatric Burzynski patient. I suspect that Burzynski uses doses at the higher range of those stated in this paper, meaning that severe side effects may occur far more regularly than he seems to let on. Indeed, in 1998, the FDA noted that 65% of the 404 patients participating in a study were suffering from hypernatraemia, which they said may have contributed to the deaths of at least seven patients.

So, the big question is – does the treatment actually work? Unfortunately, Dr Burzynski has failed to publish any information on almost all of his clinical trials in order to answer this question. This is astounding in many ways, but mainly because if the treatment was as successful as he claims, publications would give him credibility, recognition (which it seems he badly craves and believes he is entitled to) and an increased customer base leading to, well… money (something which he also seems to enjoy). So, without any information of it in his hands – theoretically could it work?

Sadly the answer is as you might expect - not yes or no. PB is proposed to work as a histone deacetylase inhibitor (HDACi). Histone acetylation basically influences which genes are expressed in a cell and which are not expressed.  If a gene is expressed, protein can be made from it and then that protein can have any number of effects on the cell, such as making it divide, move to another part of the body or even die. Histone acetylation plays a role in controlling this and generally DNA which is very acetylated, expresses lots of genes, whereas DNA which is not highly acetylated expresses few. Therefore, disrupting histone acetylation with HDACi can alter the expression of some genes.

Sounds good so far, except there are a number of issues both with the drug and the way Burzynski sells it:

Burzynski claims that Antineoplastons ‘switch on’ tumour suppressor genes and ‘switch off’ oncogenes.

Histone deacetylase inhibitors will certainly ‘switch on’ certain genes and ‘switch off’ others (or more accurately, decrease the levels of some genes and increase the levels of others), but this spiel from Burzynski essentially claims that PB has conscious thought to switch on the good guys and turn off the bad ones. This is simply not possible. Genes in DNA are all a mixture of four DNA bases; A, T, G and C, regardless of whether they produce tumour suppressor genes or oncogenes. Although the roles of some of these genes are now apparent to us through years of research, it is ridiculous at best to suggest that a small molecule is capable of telling histones which genes to repress and which to activate. It frankly is just not that simple.

As for the drugs being ‘gene targeted’, this is quite simply untrue. The description of Imatinib above shows a truly gene targeted agent whereby activated ABL protein, characteristic of the root cause of the disease, is inhibited. Imatinib does have a few ‘off-target effects’ on a handful of other proteins, due to their structural similarity to ABL, and this has actually been used to therapeutic advantage in various other cancers such as a certain type of gastrointestinal tumour called GIST, which has an overexpression of a protein called KIT. Regardless, Imatinib can be considered to be gene targeted to just a handful of genes. PB however, will have effects on hundreds of genes via histone deacetylation, mostly not oncogenes or tumour suppressor genes, but ‘other’ genes, making the possibility of side effects quite large. Having an effect on ‘hundreds of genes’ is absolutely not a gene-targeted therapy, and it would appear that Burzynski is badly confused.

Of course, if he could publish his data regarding the mechanism of action of PB/antineoplastons in a reputable, reliable journal, maybe his claims would have more credence. The entire experiment could be achieved using now reasonably cheap ‘Gene expression microarrays’ at a cost of just a few thousand pounds – a drop in the ocean in research terms. Again, the fact that he hasn’t published this data, but continues to offer the treatment without any evidence of how it works, is astoundingly poor. At best, he doesn’t know what he is talking about, at worst, he is actively making all of this up.

Burzynski promotional literature has even gone so far to suggest that he is heralding in a new era of ‘gene targeted, personalised cancer therapy’. This is egotistical nonsense and frankly insulting to the scientists like Dr Brian Druker who truly are revolutionaries in the development of gene targeted therapies for cancer such as Imatinib. Burzynski has realised there is a party going on and attempted to gatecrash. Sadly it seems that he doesn’t even know where the party is, and has turned up a number of years late anyway. Its frankly a bit embarrassing from an outsider’s perspective.

If patients wish to try HDACi drugs, they should consider going on clinical trials using new, better HDACi drugs.

PB was discovered decades ago, and although it has been successful in treating a few disorders such as urea cycle diseases, there is little to suggest it is particularly useful in cancer. New generation HDACi drugs are in clinical trials across the US and other countries, which will likely have a higher efficacy (less drug needed for same effect), fewer side effects and may target histones in a different way. Regardless, there is a reason why PB has been largely forgotten about by mainstream medicine (and it’s not because Burzynski owns it, he doesn’t… it is owned by a mainstream pharmaceutical company he has no connection with). It is not as good as other available alternatives and is largely obsolete. Clinicaltrials.gov currently offers 145 open trials for HDACi drugs, almost all in a variety of cancers . In contrast, there is not a single trial listed for PB in any cancer. Uninformed critics may claim this is due to money and drugs companies not profiting from old drugs. This belief can be easily quashed by the observation that there are 28 open clinical trials for another HDACi drug; valproic acid, which has been around for in excess of 30 years (albeit in treatment for epilepsy – its HDACi properties were discovered comparatively recently), hence it is off-patent, exceptionally cheap and drug companies will likely only be able to make minimal profit from it. PB has not passed even phase II clinical trials for most applications, let alone phase III (a milestone which all drugs must normally pass, before being offered widely to the general public - another black mark on the dealings of Burzynski). However there are some phase I clinical trials (such as Gilbert et al, mentioned earlier), which appear not to have been followed up, indicating that the researchers were not pleased enough with the outcome to pursue the drug any further. In contrast newer HDACi Vorinostat is approved for treatment for a type of lymphoma (passed phase III)  and 95 open clinical trials are investigating its use in a range of other cancers.

There is very little evidence that HDACi are useful in cancer when used alone.

There is some preliminary evidence that HDACi in combination with other agents may be useful. For example, HDACi Vorinostat has been proposed to increase sensitivity of tumour cells to radiotherapy. Evidence suggesting that HDACi is useful alone in treatment of cancers, as various patient blogs and Twitter accounts have implied, is severely lacking.

Essentially, flogging a dead horse does not even begin to describe the way that Burzynski is using ‘antineoplastons’. I suspect he knows they don’t work very well either and is just attempting to engorge the Burzynski pension fund as much as possible. Potential Burzynski patients should know that yes, HDACi may have some effects in some tumours, but putting their trust in Burzynski who:

  • Is not an oncologist, but is arrogant enough to presume he can dabble in one of the most complicated medical disciplines with no formal training;
  • Is not a paediatrician, but experiments on children with a drug which has not even passed (or begun) phase III trials;
  • Seems to be happy for patients to believe his treatment is non-toxic when this is simply not the case;
  • Continues to sell antineoplastons as novel agents, when in fact PB is metabolised into the same chemicals;
  • Implies that antineoplastons are gene targeted, when this is clearly not the case at all;

…may be a big mistake.

I understand that a lot of these patients are in truly impossible situations where their cancer is terminal. I would urge them to speak to their oncologists regarding current trials, and even search the Clinicaltrials.gov website themselves, to find properly controlled clinical trials of new drugs, or new combinations of drugs that they may be eligible for. Most of the CML patients who opted in for the first phase III trial with Imatinib are probably still alive to this day, over ten years later. It would be unfair to claim that ‘Imatinib style successes’ happen frequently in clinical trials, as this is not the case, but improvement in outcome, whether it be months more than conventional treatment regimes, years or sometimes as in the case of Imatinib, a ‘cure’, do happen in clinical trials. Even a small chance of achieving a cure, or more time might be an improvement on Burzynski. His absolute reluctance to produce any kind of data and subject it to scrutiny from his peers indicates that Burzynski has no confidence in his outcomes either and this should set alarm bells ringing for any patients considering his treatment.

If patients are particularly interested in pursuing HDACi drug treatment, then I would suggest researching alternatives to Burzynski and be aware that very few bona fide, well respected centres will offer them on their own, due to absolutely no proof that they are ‘curative’ as single agents. The Burzynski treatment is out of date, will probably have worse side effects and as described by many others, the level of care received at the clinic seems simply inadequate for cancer patients trying an experimental treatment. After starting a new treatment in trials, patients should be closely monitored, not sent to nearby hotels and then rushed to other, mainstream hospitals if treatment complications arise - as recommended in Burzynski patient literature and as described in a recent patient blog.

Cancer treatment is complex, can be dangerous for the patient and should be studiously monitored by professionals. Burzynski appears to underestimate many of these critical factors and his patients may be suffering as a result.

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.

Bite Sized Science: Plants are harmless, right?

By Sonia Watson

Of all fallacies none get my attention more than the naturalistic fallacy, the claim that anything “natural” is good and “unnatural” is bad. You can eat “natural” food and treat yourself with “natural” medicines, because of course the human body just can’t deal with ikky man-made products…honestly, have these people never been pushed maliciously by their younger cousin into a bush of nettles? Nature can be a stingy, itchy bitch. But she can be a lot crueller. Deadly even.

A new study published in PNAS adds to the decade of evidence that use of extracts from Aristolochia plants in herbal medicine can have fatal consequences. Aristolochic acid (AA), a compound produced by the plants, was first red flagged in 2001 after being linked to kidney damage and urinary tract cancers in Belgian women prescribed a weight-loss treatment containing the compound. It was subsequently found that AA causes tumours that have specific gene mutations. The new study into the effects of AA was conducted in Taiwan where the use of Aristolochia herbal remedies for, among other things, kidney stones, snake bites and to ease childbirth (the plants are also known as birthworts) is widespread and the incidence of upper urinary tract carcinoma (UUC) is the highest in the world. It found that patients with UUC carried this gene mutation specific to AA induced tumours, while those in their control group (patients with renal cell cancer) did not.

Although use of Aristolochia is now banned in Europe it is still widely available in Taiwan and interestingly its use is still legal in the US.

"Natural" may sound like a nice, fuzzy marketing word in today’s world but it is certainly not a synonym for "good".

Link to study: [http://www.pnas.org/content/early/2012/04/03/1119920109.short]

Chen et al., Aristolochic acid-associated urothelial cancer in Taiwan PNAS 2012 ; published ahead of print April 9, 2012, doi:10.1073/pnas.1119920109

Burzynski and Patient Choice

By Jennifer Keane

It’s difficult to know where to start a post like this, perhaps because I most often start my posts by noting something which has been asserted as fact, and then proceed to debunk it. This post is about Burzynski, a subject which is becoming increasingly hard to write about, because two issues - namely the validity of the treatment (incorporating Burzynski’s practices, honesty, publication, etc), and the patients being treated - have become so entangled that it is difficult to discuss one without treading on ground covered by the other. Last week, after being contacted by a tweeter who asked me some leading questions about Burzynski, I tweeted the following messages:

This sparked a series of messages (excerpts of this particular exchange can be seen here, many examples can be seen by simply searching for #Burzynski on Twitter) the general form of which have become par for the course for any people critically discussing Burzynski on Twitter. It isn’t long before I am being asked to comment on specific patient cases (in this case, Laura Hymas of HopeForLaura), and before that specific patient is drawn in to the conversation. Despite the fact that it was a supporter of Burzysnki who originally began to include Laura in the conversation, it quickly becomes a case of “skeptics attacking a patient”.

Though I suspect our reasons will differ wildly, there is one point on which myself and @BurzynskiSaves agree on here - it is all very sad indeed; a conversation which started about a treatment, and the need to publish data, has devolved into mudslinging with patients and supporters.

Stanislaw Burzynski & Antineoplastons

At the heart of all of these exchanges are the questions of validity, honesty, and integrity - does Burzynski’s treatment work as advertised, is he being honest about the protocols that he is using and the results he is getting, and is it correct for him to be operating as he does. At the risk of treading over old ground, I do not currently believe that Burzynski’s treatment works as advertised. However, this belief is not because I blindly believe whatever the FDA tells me, or because I want to help suppress a revolutionary cancer cure; it is because I have examined the evidence presented to me, and concluded that it does not support the assertions that he is making. Burzynski’s website tells us that he discovered antineoplastons in 1967, the same year he graduated. It also tells us that he founded his clinic and began treating patients in 1977. Burzynski’s resume notes that he made a presentation on April 9th, 1988, in Kurume, Japan, at the Kurume University School of Medicine. The title of this presentation was “Clinical Results of Antineoplaston Therapy”. In order for such a presentation to be made (assuming that the details about the presentation are accurate), there would have to be clinical results, and in order for there to be results, there would have to be clinical trials. One can postulate, then, that Burzynski began trying his antineoplaston therapy, in humans, at some date before the presentation. It has been approximately 45 years since he discovered antineoplastons, approximately 35 years since he began treating patients with them, and approximately 24 years since that first presentation in which he discussed the clinical results of his treatment. This is an extremely long time to be testing a treatment without publishing significant results, moving further through the trial process, or reaching a stage where the product can be marketed to the general public. The FDA estimates that it takes approximately 8.5 years for a new cancer drug to reach the market, from inception, through trialling, and to delivery. This 8.5 year timeline includes laboratory and animal testing. The FDA have recognised that some drugs are a priority, and have even made special processes available to try to shorten this timeframe further, to allow patients to benefit from lifesaving drugs. Even allowing for extra time in laboratory development, typical delays in the process, and other factors, 45 years is an extremely long time for anyone to be trialling a drug, especially one with such astonishing results.

There have also been some questions raised about the honesty of Burzynski, and this is of particular importance when it pertains to his treatment protocols. Patients go to Burzynski when they have no other treatment options available, or when those treatment options available have proved unsuccessful or too dangerous. They do so because what Burzynski advertises is a targeted gene therapy using his antineoplastons. I suspect that many are not expecting to be given chemotheraputic drugs as part of their treatment, and it is certainly not something that is featured prominently on his website, but Burzynski isn’t just treating with antineoplastons - he’s often prescribing multiple chemotheraputic drugs for off-label use, at highly inflated prices from his own pharmacy. One patient blog talks about Afinitor and Votrient, and mentions that the patient is taking a combination of five off-label chemo drugs, along with the antineoplastons. This is not the only mention of Afinitor, there are numerous comments (scroll to comments for those) and patient blogs which mention that they are taking this (and other) chemo drug in addition to the antineoplastons. This couple maintain that they were not told that some of the drugs were chemotheraputic drugs, and that taking those drugs has cause problems with eligibility for other trials (though I am uncertain of the veracity of this site). Though the Burzynski clinic website prominently features the antineoplastons as the cure for cancer, it seems that many (if not all) of the patients are being given traditional chemotherapy in addition to the antineoplastons.

Finally, many have questioned Burzynski’s integrity, due to the prices of treatment at his clinic. Reported prices vary, but are generally in the tens of thousands per year of treatment. The FDA permits charging during clinical trials under very specific circumstances (related to investigational drugs), though it does not regulate what is charged. The FDA permits the charging so that drug manufacturers can recover the costs for making these drugs while trialling them. Although one patient blog mentions that the charge is not for the trial but for “case management” (suggesting that they are not being prescribed under this investigational drug regulation), it is possible that things have changed since this blog (and indeed, the law changed to allow for charges around the time of that blog). One can only speculate what it costs to produce antineoplastons, though Burzynski sells capsules containing antineoplastons for approximately $1 per capsule (0r $0.78, if you buy in bulk), though Burzynski seems to make most of his cash charging inflated rates for case management and off-label chemo drugs.

Data is important

It would be more than a little hypocritical of me to point out the fallacy of ad hominem attacks, and then base my own criticism of Burzynski solely on personal actions which are questionable. Whether or not Burzynski is himself ethical, honest, or even nice, if he has developed a miracle drug, he has as much right to trial it as anyone else (and even to be lauded for his discovery). Though I don’t like the stories which suggest dishonesty, they are just stories, and are as liable to bias as the patient anecdotes that “skeptics” dismiss as “not proof”. One thing which is more telling than any stories, and the point which should be focused on, is the lack of any real data to support Burzynski’s treatment. Though his website has many patient anecdotes and success stories, there are also plenty of examples where the treatment did not work, and as he seems to exclusively list success stories, they can not be counted on as reliable evidence. Most articles about antineoplastons published in scientific journals have been authored or co-authored by Burzynski himself. When people use these to point out that he has published data, they overlook the mediating factors - namely that the research hasn’t been replicated (to any significant degree) by completely external researchers, and that the journals in question are often considered poor quality. When it comes to drug development, data is king - this is simply the application of the scientific method. An assertion must have the data to support it, or else it should be considered false, and in this case, the data to support it is not reliable. It is true that there have been cases where data has been withheld from the FDA, and where drug companies have behaved unscrupulously - I absolutely won’t claim that “big pharma” is perfect - but these cases do not override the need to produce data which supports your assertion that your treatment works.

Patient Choice & Informed Consent

It has been said to me that patients don’t care about data, they care about people. They speak to people treated by Burzynski and they are given hope, and hope is the most important thing. It would be easy to keep discussing Burzynski in a very detached way, focusing only on the data (or lack thereof), but for many, this discussion is too shallow, because there are patients involved, and those patients have families and friends, and a whole host of people who would give anything for them to be better again. More than this, the patients have been drawn into the discussion, either willingly or unwillingly, and for them, attacks on Burzynski must often seem very personal, for a number of reasons.

One issue that is often raised is that of patient choice - the right of a patient to chose their treatment without criticism. Cancer treatment can be brutal, and even though treatments have improved, and the side effects are more manageable than before, there is an undeniable effect on the patient. Sometimes, patients decide that the side effects of the treatment outweigh the potential gain, and either decide to seek no more active treatment (e.g. pursuing palliative care only), or decide to seek an alternative, whether it be conventional treatment in another country/hospital, or an alternative therapy. Patient advocates, and Burzynski supporters, all maintain that patient choice is important, and I’m inclined to agree. I imagine that, if I were very ill, and the chances of a cure were not good, I would like the ability to choose whether to pursue further treatment. I wouldn’t like to deny this choice to anyone, but what I would like is for that choice to be based on the best information possible.

People say that patients don’t care about data, journals, and FDA squabbles, but even if that is true, patients do deserve the truth about their treatment, their prognosis, and everything associated with it. A patient has every right to choose alternative medicine over conventional treatment, but it is a poorly informed choice if it is based on informercials, advertising websites, and unproven claims. The fault, and the criticism, lies not with the patient, but with those who would prey on people when they are feeling vulnerable or desperate. Scientific papers are often dry and inaccessible (both because of the content, and because of the expensive paid access required to read them), and it is not as easy to relate to data points on a graph as it is to relate to a named patient, with an adorable picture and a heart-warming cure story. Quacks know this, and use it to manipulate people, helping only their own bank balance, and often leaving families devastated when the promised cure does not come about. I have been accused of attacking patients seeking Burzynski treatment, of wanting to deny their freedom of choice, or take away their last hope; this has never been the case. I don’t attack patients because I am aware of how difficult it is when a family member is sick, and when the treatment is difficult. I don’t attack patients, because I believe the blame should be laid squarely at the feet of those who manipulate and deceive patients.

A final, thorny issue is that of fake patients. Even as people call for Burzynski to publish data, there are various patient blogs reporting successes and shrinking tumours, and a multitude of patient anecdotes and youtube videos featuring people who were given a very poor prognosis, and have lived far longer than expected. Whenever Burzynski is discussed, these patients are mentioned as proof, and I have more than once been asked to comment on specific patient cases, or asked if I am, in criticising Burzynski, calling these patients fakes, shills, or liars. The truth is, I can’t comment on these cases, because I just don’t know the circumstances. I am not privy to medical treatment details, personal information, or anything like it. I see the information that is made public by the patients and nothing more. I am glad to know that there are people beating the odds, living longer than expected, and even going into remission where before there was little hope for a cure, but I can’t say what causes these events any more than a Burzynski supporter can claim them as definite proof of efficacy. I would certainly prefer to believe that we do not live in a world where people pretend to have terminal illnesses to make money, sell a treatment, or otherwise deceive people, though I know there are those who have. Asking me to comment on patient cases is ultimately fruitless - I have no way to know if people are legitimate, or if they are telling the truth when they update their blogs - and, importantly, my quibble has never been with the patients. If there are people acting as paid marks for Burzynski, then they are doing something which my conscience would not allow me to do, but they are ultimately in the employ of Burzynski, and this is where the buck should stop.

This is not, and has never been, about me wanting to take away hope, or be malicious to patients. The onus is on Burzynski to publish data to support his claims, and I believe that patients are entitled to know what data there is (or is not). Patients deserve real information to help them make their treatment choices, they do not deserve to be manipulated or lied to. This has only ever been about one thing: information. Patients deserve information, not infomercials.

 Also appears on “And Another Thing…”