Categories
Current Affairs

Burzynski and Patient Choice

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.

 

Categories
Current Affairs Science

It’s Burzynski, Jim, but not as we know it.

Stanislaw Burzynski has been in the spotlight for some time now, and if you’re reading this, there’s a good chance that you’re already aware of the controversy surrounding his alternative cancer treatment: Antineoplastons. Burzynski claims unheard of success rates with his treatment, and his website is full of testimonials from patients who say they have been cured of incurable cancers. Given all of the publicity, one might be convinced that Burzynski has just one string to his bow, but it seems that we may have been too quick to judge. Cancer patients can allegedly benefit from antineoplastons, but it seems that we can too.

Aminocare is the genetic solution to anti-ageing, brought to you by the Burzynski Clinic. It will solve all of our ageing problems with a whole new approach which focuses on genetics. As there are a whole host of problems associated with advanced age, many of them more significant than wrinkly skin, something which could combat these problems at a genetic level could be revolutionary – imagine a world free, not only of cancer, but of Alzheimer’s, for example.

Aminocare Brain Longevity Supplement is marketed as possibly preventative of Alzheimer’s (yours for the bargain price of $60 for 60 capsules!), and two of the ingredients stand out as significant. The first is curcumin, a compound which is part of the tumeric spice. Curcumin is the subject of ongoing trials because it has demonstrated some promising results in animal and in vitro studies, and it is true that in animal tests with transgenic Alzheimer mice, there a marked reduction in the plaques and inflammation which are characteristic of Alzheimer’s. So why aren’t we using this revolutionary treatment in humans? Simply, because we are not mice. Mice and humans absorb curcumin quite differently, resulting in drastically lowered amounts of free curcumin (that is, curcumin which has not bound to another molecule as part of metabolic processes) in humans. Curcumin which has bound to another molecule (most often glucuronic acid) can not pass through the blood brain barrier, and thus, cannot target the plaques and inflammation. Because we are aware that curcumin is absorbed differently, much research has been done on combining curcumin with other compounds, to try to increase the absorption. One such compound is found on the ingredients list: piperine.  A note in the product information tells us that piperine is something which increases the absorption of curcumin, and piperine was one of the first compounds tested which appeared to increase the bioavailability of curcumin. However, the overall levels of curcumin absorbed still do not match those seen in prior animal testing. There are some compounds which appear to be performing well in making curcumin absorb more readily, but those compounds are still in the early stages of testing, and piperine is not one of them. The inclusion of that animal test titbit in the product information is a subtle ploy; even though it is technically true, it is not the whole truth.

The second ingredient which caught my eye was “Glutamine Derivative (PG)”, which is described in the product information as a proprietary amino acid derivative phenylacetylglutamine. If you think that looks familiar, you’d be quite right – Burzynski says that it’s the active ingredient in A-10-I, one of his antineoplastons, which apparently cure Alzheimer’s as well as cancer.

Not content with ridding the world of cancer and degenerative  brain conditions, Burzynski also wants to tackle the scourge of make-up wearers everywhere – ageing. With Aminocare A10 Dietary Supplement, you can genetically slow down ageing. That’s powerful stuff (especially as there is still a ways to go before there is certainty about the genetic causes of ageing), let’s take a look at what’s in it. A10 Dietary Supplement claims to be a blend of amino acids, vitamin B12, and our old friend L-Glutamine Derivative (a.k.a. Dr. Burzynski’s proprietary ingredient, a.k.a. antineoplastons). Below are some of the claims made by this product, and I have highlighted some pertinent information:

A10 Supplement Claims

 

Absolutely none of the statements made about the efficacy of the product have been verified by an external body. This should be enough to make anyone very wary of spending money on such a product ($120 per box!), but if that’s not enough to give you pause for thought, a sidebar note about the product certainly should:

A10 Pic and Blurb

Aminocare A10 slows down the ageing process by gene expression modification. This is hinted at in the product description (“aids the regulation of normal cell division”) and is stated in the sidebar advertisement for the product (pictured left). This over-the-expensive-counter, completely untested, unregulated, and unverified capsule is going to stop you ageing by messing with your gene expression. How will it do this? Presumably, with the magic of antineoplastons, which are advertised as targeted gene therapy, because they “turn off” the “cancer genes”.

Perhaps you, like me, do not relish the thought of swallowing tablets. Never fear, as you may modify your gene expression and stay looking young simply by rubbing antineoplastons onto your skin.  The two antineoplaston ingredients in the  Aminocare Cream and Lotion cream “may restore the proper balance in gene expression” by turning off ageing genes, such as the icky wrinkly gene, and turning on other genes (such as the forever young gene) which are silenced during the normal ageing process. I have used chemicals in the lab which had the potential to mess with your genes and they are, in a word, scary. They are not something I would be in a hurry to smear all over my skin, so it is a very good thing that antineoplastons have an in-built identifier to know which are the “good” genes, and which are the “bad” genes.

A substance which claims to cure everything is called a panacea, and if you investigate this word, it’s likely that the only cures you’ll find are mythical ones, such as the philosopher’s stone, or the elixir of life, and this is not an accident. Throughout history, people have touted various substances as panaceas (tree sap, silver, mercury,etc.), and they have all been proven false. The truth is that we suffer from diseases which are so diverse that there is no one substance that could hope to conquer them all. The patter has changed, the terminology is littered with pseudo-scientific jargon, but the message is still the same. Come one, come all – you can inject them, eat them, or even just rub them all over your body. Antineoplastons are good for the soul!

Categories
Current Affairs

Burzynski in Ireland; arguing with believers

Earlier this morning, I tweeted a link to this very sad article, in which we are told that a toddler has passed away after a battle with cancer. Though devastating for the family, the story would be otherwise unremarkable, except for the brief mention of the treatment the toddler received. According to the article, the family opted to refuse the chemotherapy (due to the high risk), and instead, opted for Burzynski’s treatment.

I have spoken here before about Burzynski’s treatment, and the fact that I believe it to be ineffective. While I accept that some people will want to supplement conventional treatment with things that help them to maintain a positive outlook, I believe that it is dangerous to eschew conventional (and proven) treatments in favour of unproven and/or dangerous quack treatments, and I believe that it is wrong when this decision is made, not by adults for their own treatment, but by adults, on behalf of children. I realise that this is occasionally a controversial opinion to hold, and this was reaffirmed today, when I tweeted the link to that article, saying:

A #burzynski victim from Ireland – a toddler has passed away after eschewing chemo for quackery.

This prompted a series of increasingly irrational responses from a twitter user known as mrs_bopp, aka, Kate Bopp. I’d like to address some of the arguments that she made in greater detail than twitter will allow, so to my blog I’ve come. I’ve used Storify to capture the conversation in full, and you can see it here, but for the purposes of clarity, I’ll extract some individual tweets/arguments below.

  • You have no first hand experience with cancer, and therefore are ill-informed

Leaving aside for the moment the fact that my father is battling cancer for the second time, thus providing me with plenty of experience with cancer, its treatment, etc., this is a weak argument. I also have no first hand experience with Hogwarts, but I can assure you that, having thoroughly read and re-read the Harry Potter series, I am extremely well informed about it. Even if there was no one in my family or circle of friends who had ever had cancer (and extremely unlikely situation), merely having been around someone with cancer does not magically make you well informed. Research, keeping up with medical journals, reading about clinical trials; these things will help you to be informed about cancer.

  • Someone close to me died of cancer, so my opinion is more valid

Without meaning to sound callous, is there a single one of us out there who has not had a brush with cancer? I too have seen family struggle with cancer, and have seen friends die of cancer. I have had the unfortunate experience of seeing a child who I babysat occasionally succumb to cancer, and of comforting her friend (whom I also babysat), on the evening of the funeral. Cancer is extremely prevalent, and while I don’t mean to diminish the upset that anyone might feel upon losing a friend or a relative, the loss of a friend or relative does not make your opinion more important than someone else’s, nor does it make it scientific fact.

  • People who have made this difficult choice don’t need to hear your negativity

It’s true that reading comments or articles that question the legitimacy of Burzynski’s treatment will not help, in that they will not bring the child, parent, husband, sister, etc. back from the dead, nor will they cure the cancer of anyone considering undergoing treatment with Burzynski. The aim of my comments, blogs, or any other input, is not to upset grieving families, or to “steal hope” from those who have been told that the prognosis with conventional treatment is bleak. My hope is that people who research alternative therapies will also come across information about the controversies surrounding those therapies, and perhaps think the better of spending their life savings, and their last few months, on a treatment which will ultimately leave them unfulfilled, and not cured. My hope is that people will realise that convincing patient anecdotes are not necessarily proof of efficacy, and that they will not be taken in by them.

In recent weeks and months, several people have been taken to court to face charges ranging from criminal mistreatment to manslaughter. The reason? Rather than bring their child to a medical professional, they opted to use “faith healing”. In the case of the Hickmans, this resulted in the death of their son. Is it better that we spare these parents the difficulty of agonising over their choice, than inform people so that others will seek medical treatment? Is it better that we don’t discuss these cases, and stay silent while more people are allowed to succumb to treatable conditions due to their reliance on alternative medicines and faith healing? I have no doubt that the loss of a child is absolutely awful, and I have no wish to bully the parents of these children, but I also do not believe that we should hide from the controversy surrounding these treatments merely to prevent upset.

  • Do you have kids?

In the last paragraph, I mentioned that I don’t doubt how awful it is to lose a child. I can’t be certain of how I would feel in this circumstance, because I don’t have a child (or children) of my own, and therefore, have never lost a child. The “Do you have kids” argument is often thrown out as a hook – you reply that you do not, and are told that you, therefore, couldn’t possibly know what it’s like to have a sick child. While I don’t understand the exact specific feelings one has when their child is sick, I do understand that this argument is weak, and essentially baseless. The fact that I haven’t got children does not change the outcome of clinical trials, the misinformation spread about alternative medicinal cures, or the evidence upon which their debunking is based. The fact that I do not have children proves just one thing: that I don’t have children. Another twitter user (@Saoili) replied to this one, and though the tweet isn’t included in the storify, I wanted to include it here, because I believe it speaks volumes:

  • Oh yeah? Well chemo costs lots of money, and natural cures are just being held back by big pharma because they can’t make a profit on them.

Late in this conversation, some spectacular back-pedalling occurred, when @mrs_bopp, having first brought the issue of the cost of chemotherapy into the conversation, attempts to turn it around, and say that she never mentioned such things. Unfortunately, the exact free/cheap phrase is one I took from her own tweet, whereby she claims we are naive because we don’t know how much chemotherapy costs.

This is a familiar tactic – chemotherapy exists only to make money for big pharma, and other cures are suppressed to the detriment of the public. Of course, mrs_bopp, like many others, refused to be drawn on the fact that Burzynski’s treatment is far from cheap or free. Even after multiple deflections, and plenty of question dodging, there was no acknowledgement of the fact that, this treatment at least, costs rather a lot. If someone is truly convinced that there is a big pharma conspiracy, there is little that can be said which will change their minds, so the best one can hope for is to point out the logical flaws and call them on the back-pedalling.

  • You’re just close-minded

If in doubt, question my ability to believe things which are, obviously, beyond my comprehension. Ultimately, if clinical trials prove that Burzynski’s treatment (or any other alternative treatment) is effective against cancer, I will be delighted. It will represent a significant step forward in the treatment of cancers, and an improvement in the condition of patients while they are being treated. I look forward to the day when chemotherapy is not the gold standard of cancer treatments, and when there are more effective, and less toxic alternatives available. Unfortunately, that is not the case. Clinical trials have not proven the efficacy of a whole host of alternative treatments, and chemotherapy remains the gold standard because it works, and has been proven to work. I agree that patient anecdotes are compelling, and the videos and pictures do paint a very rosy picture of Burzynski’s treatment, but until I see some real clinical data, I find it difficult to believe that it is the miracle cure it is purported to be. It is important to keep an open mind, so that when new evidence arises, which contradicts beliefs that you previously held to be true, you can look at the new evidence with an objective, critical eye, and decide if it is conclusive enough to change your beliefs. It is important, also, to make sure that your mind is not so open that all your brains fall out.

The arguments that I saw this morning are by no means atypical, but they continue to be wheeled out whenever someone asks for proof, or evidence, or even just some common sense, so let me be quite clear. I am not out to make sure that people abandon all hope. I am not trying to upset families or ruin lives. I value the truth, even if that truth is not something that I particularly like, and I will continue to do so, regardless of how many people around me do or do not have cancer, regardless of whether I have children, and regardless of how many times I am accused of being heartless, or of lacking integrity. You are entitled to your opinion, and so am I, but neither of us are entitled to our own facts, and nor are we entitled to fill in the perceived blanks in scientific knowledge with whatever nonsense we chose to make up. I will continue to publish my opinion, and will expect that a percentage of people reading will disagree – and if you also wish to publicise your opinion, you too should expect some debate and disagreement – but the mere fact of your disagreement will no more detract from scientific fact than it will stop me publishing those facts.

I typically finish up my blog posts with a summation paragraph, and an attempt at some sort of dry wit, but in this case, I’m going to leave you with a Tim Minchin beat poem which resonates deeply with me (and not just because of these rose quartz healing crystals I’ve been carrying).

 

 

Categories
Current Affairs Science

How much does hope cost?

How much would you pay for hope? £75,000? How about $140,000? Given a life-threatening illness, or a chance to completely change your circumstances, I’d guess that most people would say that hope is priceless, and that they would pay anything, and indeed, everything, for that chance at hope. The fact that hope is priceless often comes up when discussing medical treatments, particularly those for terminally ill people.

Skeptics are often decried as horrible people who aim to steal hope from people when they debunk various quack treatments, dangerous cults,  or weird beliefs; in many cases, these quack treatments have successfully preyed on very vulnerable people who are trying to fight something that we probably all fear – an early, or untimely, death. And who are we, the nameless, soulless skeptic, to come and tear this last hope from the hands of the dying?

Well, in answer, I’d first like to turn my initial question around – we all probably have a good idea of exactly how much we’d pay for that last dash of hope, but how much do you suppose you’d charge for it? An assertion oft put forward by proponents of alternative medicine, for example, is that there are cheap and effective treatments available for many life-threatening conditions, such as cancer and AIDS, but that because the molecule can’t be patented, “big pharma” can’t make a profit, and therefore isn’t interested. It is lucky for us, therefore, that these renegade magicians are available to offer this cure, at this extremely cheap price, to everyone, profit-free. Oh, wait. That’s not quite right. Actually, each “cheap and effective” cure that “big pharma” ignores because it can’t turn a profit is usually bundled up with some appropriate pseudo-science sounding nonsense, perhaps tacked to someone with a dubious qualification, and usually offered to the public at the phenomenal price of approximately $your life savings$…

One such treatment recently brought to light is provided by the infamous Stanislaw R. Burzynski. While his name is often followed by a string of letters indicating credentials, I won’t include them here. Their legitimacy is questionable at best:

Burzynski’s claim to a Ph.D. is questionable. When I investigated, I found:

  • An official from the Ministry of Health in Warsaw informed me that when Burzynski was in school, medical schools did not give a Ph.D. [1].
  • Faculty members from at the Medical Academy at Lubin informed me that Burzynski received his D.Msc. in 1968 after completing a one-year laboratory project and passing an exam [2] and that he had done no independent research while in medical school [3].
  • In 1973, when Burzinski applied for a federal grant to study “antineoplaston peptides from urine,” he identified himself as “Stanislaw Burzynski, M.D, D.Msc.” [4]

Quackwatch, Nov 2006

This treatment, involving an unproven substance derived from human urine, will allegedly cure numerous forms of cancer with virtually no side-effects, and far fewer damaging effects than the standard treatments of chemotherapy and radiotherapy. It’s a treatment that one British woman, Laura Hymas, is saving hard for, because both she and her family are banking on it giving her back her life.

It is at this point that skeptics tread a very narrow line, and agonise over writing posts like this. Do you tell this young, photogenic woman with her adoring husband, and their adorable son, that their last hope is hopeless? Or do you let them scrimp and save for the treatment, knowing with a good degree of certainty that it’s likely to result in her spending her last days away from her husband and son, squandering both time and money on a treatment that will do nothing good, and may even worsen her condition.

Many people adopt a hard line, saying that if people are gullible enough to be sucked in, then, as the saying goes, fools and their money are soon parted. That’s a bit too hard for me; when you are desperate, the blinkers must surely be hard to shake off, and the drive to see only the information which gives you hope must be immense. And often, these charlatans are convincing. Burzynski’s website is not a laughable hack-job – it’s full of official looking documentation, attractive patient before and after photos and stories, and pages full of pseudo-medical jargon that could easily mislead anyone who is not looking to disprove the treatment (and, after all, if it’s your last hope, are you looking to disprove it?)

Whenever skeptics debunk pseudo-science, nonsense treatments, or other questionable beliefs, there is always someone who will say “what’s the harm” or “why does it matter if someone believes that <insert treatment here> will cure them”. It’s true that, in a lot of cases, there’s little harm; your headache will go away whether you do nothing, take aspirin, or take homoeopathic belladonna, and the only difference is likely to be the time it takes to go away. But what of those who don’t just spend a few euro on sugar pills to rid themselves of a headache? What becomes of those people who spend their last months receiving IV urine derivatives, or forcing down juices while receiving coffee enemas, all while their life savings dwindle away? They die, and often, their families are left in severe debt, paying for the treatment that “big pharma” doesn’t want you to know about.

Earlier, I asked how much you would pay for hope. £75,000? $140,000? £75,000 is the cost of one 12-month cycle of Burzynski’s “life-saving” treatment, not including transport and accommodation costs, etc. This is the amount that will not be covered by the NHS or by health insurance, because the treatment is not sanctioned, and is, to date, completely unproven.

$140,000? This is the amount of money recently paid by one Robert Fitzpatrick to spread the message that the Rapture was coming on May 21st. He is a retired American man, and it represents his life savings. On May 21st, he stood in Times Square, clutching a bible and handing out leaflets explaining what would happen, and when nothing did, he was left dumbfounded, saying “I did what I had to do. I did what the Bible said. I don’t understand why nothing has happened.” Unfortunately for Mr. Fitzpatrick, life goes on, and he’s now broke, and likely, a broken man. The Rapture was a joke to many, but some people invested heart and soul, and significant finance, in it, and now, they have been left with nothing.

Pedalling false hope is a charlatans game, practised by the lowest of the low. They prey on people who have found themselves in desperate situations, and who have found themselves low on hope. They take advantage of vulnerable people, and leave them financially destitute, and once again, hopeless. Sometimes, the nonsense they sell (whether it is a physical product, or the promise of the metaphysical divine) is so laughable that it’s easy to forget that it’s not a victimless crime.

I can only suggest that anyone who truly wishes to help cure the diseases which rob us of friends, relatives, and loved ones, should donate to a respected and established charity or trust, or even donate time to help care for those who are dealing with these illnesses. Medical science is making huge advances, and diseases once thought deadly are now treatable, and in some cases, curable. As for the rest, we’ll get there. I hope that Burzynski doesn’t get a cent of that money, and that instead, the Hymas family can use the money to ensure that the time Laura has left is as amazing as it can be. I hope that she is the outlier, and that she does recover with conventional treatment. I hope that Robert Fitzpatrick manages to find some solid ground to stand on, and that he is not now rendered so hopeless as to consider his life meaningless. Mostly, though, I hope that people who pedal false hope are found out and stopped.

While writing this post, I was reminded of a poem by Emily Dickinson, which I studied in school. It is called “Hope is the thing with feathers”, and for me, it has always spoken right to the heart of hope itself – it never stops, it is not abashed, and it asks for nothing.

Hope is the thing with feathers
That perches in the soul,
And sings the tune–without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I’ve heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me

 

Update (28/11/11): You may be interested in another, more recent, post about Burzynski.