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.

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19 thoughts on “How much does hope cost?

  1. I’m one of those people, often talked about but rarely invited to speak, who has a serious disease. My illness is progressive and incurable and may well kill me within the next few years. My partner Donald has been through the same thing, almost dying from leukaemia, though his chances are good now, ten years out from a bone marrow transplant. We have lost a few close friends to similar things along the way.

    “Imagine if it happened to you!” I always hear people exclaiming, but few people successfully do. The fact is, those of us it does happen to are as varied as other people, and we’re not all willing to throw away everything we have on the offchance of increasing our life expectancy (if you think this sounds odd, ask yourself: do you always exercise fastidiously and eat your five a day?). Many of us, in fact, develop a very hard-nosed, realistic idea of what life is worth.

    As a journalist I have worked with some shady people and I’ve also encountered a more drastic version of this scenario; the time a contact, whom I liked quite a bit, came round desperately trying to borrow money to pay off a drug gang who had threatened to kill him. I told him no, I couldn’t give him the little I had. I needed to keep a roof over my head and food on the table; his life wasn’t worth me losing that. He understood. We all put a price on life. It’s part of survival.

    As far as my own life is concerned, I have concerns that go beyond it. I want my family to be okay when I’m gone. I don’t want my friends to be out of pocket. I’d rather the charity I work for had my money than that it be left in the hands of some quack. And I’d say that even if I thought there was a treatment out there with some slim chance of working (beyond alleviating the symptoms a bit, which conventional medicine can do). Because life isn’t about chasing rare chances, it’s about making balanced decisions.

    Ultimately, we’re all going to die. I want more life. I want it with a passion. But I also recognise that, sooner or later, my time will run out, and what matters is what is left behind. Ally Sheldon once described humans as a nesting species. As individuals we’re flimsy things but our civilisation matters. For the sake of that civilisation, as well as our individual dignity, we must refrain from squandering our resources and nourishing the exploitative in the process.
    Jennie Kermode´s last blog post ..Asking for it

  2. So you ask how much is too much for hope? Well as a mother I can tell you no amount is too much. No avenue is too risky to ensure another day with my children. I completely disagree that life is about chasing rare chances, it is. It’s about grabbing hold tightly of something that could give you another minute holding on to your child, your loved ones, your own life.

    Treatments stemming from Urine are spreading right across the medical world, even some using fecal matter, with success. As does placebo therapies.

    Perhaps this doctor is an asshole, he’s not the first. But perhaps you could save your words and not tag this in #hopeforlaura It’s a self serving a shitty thing to do. The family have made their decision and you should back off, tackle this man and his therapy some other time. I doubt you will, it won’t ensure people read your blog will it, without the handy hashtag and awful use of the word ‘moving’ when describing it.

    You really should be ashamed of yourself, using someone else’s pain to inflate your ego when people read your blog.

  3. Brilliant post. Posie, I think it is important that people read this while it is relevant and use of the hope for Laura hashtag is entirely acceptable. The phrase “As a mother” is incredibly insulting, like people without children have no compassion?

    I’d love to see the proof that this expensive-piss treatment works.

    People will always do whatever they can to save loved ones, it is not them at fault. Its the fraudsters profiting from peoples desperation that need to be stopped. I wish Laura and her family all the best and hope they make the most of their time left together, be it 6 months or 80 years.

  4. 1. Do a bit more research.
    2. Think about what you’d do if it was you or a loved one?
    3. This family have found this place because a family friend went there, they were given months to live and decided on this option, it saved their life and they’re here years later.

    It’s very easy for people like you to throw in your opinion and try to make yourself look big and clever. You’re a waste of space quite frankly and strike me as the sort of person that’d give up if told they had any serious disease.
    Why shouldn’t Laura try something that she has seen work for her friend???

    People like you are an extremely small minority that love to just argue the point. You haven’t had many replies to this but I just though I’d give my opinion.

    Thankyou and I very much hope you lead a long happy healthy life.

  5. I recommend you do your research properly there are a lot of inaccuracies in your statements.

    also:

    He talks of IV urine derivatives when burzynski hasn’t got peptides from urine since approx 1980 he has been able to synthesize these products, and coffeee enemas – no mention of this from burzynski as a treatment you are thinking of Dr Gonzalez.

    Secondly it IS covered by some Health insurance providers in america

    It passed phase 2 clinical trials with a 67% response rate in Astrocytoma – 30% the tumour dissapeared and 37% had tumour shrink more than 50% THIS HAS NEVER HAPPENED IN ANY CLINICAL TRIAL FOR ANY BRAIN CANCER

    I would personally ask you to remove any references to Laura especially her surname and stop plugging your argument/blog using and damaging her cause, this is her freedom of choice to choose this method of treatment and perhaps take this up directly with the Burzynski Clinic and let them answer for themselves?

  6. @Joe this family friend of theirs, were they receiving other treatment at the same time?

    @James If you take off your tin foil hat for a moment, don’t you think that if this treatment worked the way the Doctor claimed, the news, other clinics, his peers and the journals would be all over him? You are implying the authorities are deliberately ignoring his amazing work? Why would they do that?

    The fact is the results he claims to have had can not be verified by third parties. Phase two trials, correct me if I’m wrong just look for anti-cancer properties and most of the subjects were receiving conventional treatment at the same time? Until he can prove his treatment (with or without conventional treatment) has any benefit over just conventional treatment (Phase three) no one should claim it is effective. That’s why the FDA does not approve Antineoplastons as a treatment for any disease.

  7. I just want to add some inportant facts. Whilst the FDA were trying to put burzynski in prison for false charges the American government actually filed patent papers trying to patent the same range Of antineoplastons that burzynski had already patented. The evidence is there is you care to look. On the patent papers they state that their chemicals (the same as antineoplastons) show anti cancer activity and state that current cancer fighting efforts all cause major toxicity, disability and actually are carcinogenic. So let’s just clarify here. The FDA and NCI were trying to incarcerate burzynski and were so confident they would win (rendering him a criminal unable to fight against the theft of his patents) that they filed these patents on record.

  8. Bob (or may I call you Joe?), I see you’ve posted exactly the same wild claims about the American government filing patents on another site. It’s not true, is it?

    If anyone is interested in the precise reasons why “Bob”‘s claims don’t stand up to scrutiny, they have been thoroughly debunked in the other place he posted exactly the same claims:

    http://www.thetwentyfirstfloor.com/?p=2375

  9. That Burzynski Movie derived stuff Bob’s posted looks like conspiracy theory laden and patent system illiterate¹ mud slinging rather than “important facts” to me too. Firstly, it appears the FDA were (quite rightly) just trying to stop Burzynski doing quackish and illegal things:
    http://en.wikipedia.org/wiki/Stanislaw_Burzynski Secondly, he apparently wasn’t even doing the science properly to find out if his ideas really do work: http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/PharmacologicalandBiologicalTreatment/antineoplaston-therapy?sitearea=ETO Lastly, that stuff about “patent theft” is hysterical nonsense. Sometimes one does find wrongly granted duplicate or partially duplicate patents, but these appear to be just run of the mill follow-on/improvement patents. I’ve seen some shocking patents in my time but a duplicate application which references (directly or indirectly) the patent prior art it’s duplicating and even then is granted?! That would be something.

    PS.

    “current cancer fighting efforts all cause major toxicity, disability and actually are carcinogenic.”

    That’s paraphrasing that risibly silly and tin foil hatted remark near the bottom of that webpage¹, I believe. The patent – like all patents – discusses its potential advantages over the prior art. In this case the obvious advantage of having fewer/less harmful side effects than the current best treatments are very well known to have. But the narrator tries to portray this pope-is-catholic ‘revelation’ as some kind of unwitting slip by the medical establishment conspirators – an admission of the wilfulness of their evil ways. *sigh*

    ¹ http://www.burzynskimovie.com/index.php?option=com_content&view=article&id=104&Itemid=86

  10. Thanks for this post..

    @Posie.. promoting woo to anyone is reprehensible, and thankfully this post exposes some of it..

    Bob: as someone else pointed out, your arguments have been debunked elsewhere, you should probably come up with a new spiel..

    False hope is nothing but a lie, giving false hope to the critically ill is effed up..

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  15. Burzynski soaked my late wife for about 50k. She was looking at spending 35k or so every month with this clinic. Reading these Burzynski posts bring back many bad memories. Once I sought out info, I wasn’t exactly behind her going to Texas for ‘treatment.’ The one thing we have to remember that for someone staring down death, they look for the people around them to give them hope. Specifically those who are going through the same hardships they are. It’s like if you are having a good day, then I can have on too. They literally live for that. And it’s just devastating to see these people preyed upon like that.
    With that said, you don’t get much better from traditional medicine. Just more people who believe they know what they’re doing.

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