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.

Current Affairs Science

No Accounting For Accountability

Not so long ago, there was a time when medical experts thought that they were close to eliminating measles permanently. Now, the World Health Organisation has had to push that target date back to 2015, at the earliest. Many people, particularly those of a more skeptical nature, will attribute this to the infamous Dr. Andrew Wakefield, who was responsible for the publishing of a paper which irresponsibly linked the MMR vaccine to Autism (a link which has been subsequently disproved, and a paper which has been so thoroughly debunked that Wakefield has been struck off the medical register in the UK). However, Andrew Wakefield is not the only person responsible for the spread of these baseless lies. He may have originally authored and published the paper, but what of those who are responsible for ensuring that its contents spread far and wide?

Well, now they’re publishing articles warning us of the dangers of measles, a disease that was once close to complete eradication, and reminding us, in the smallest of bullet points, that there is no link between the MMR vaccine and Autism. One such article, published just the other day, is by the BBC – Measles outbreak warning as cases rise in Europe and UK. In this article, we’re told about the epidemic of measles in France, and warned that, particularly for families travelling with young children, the risk is high. They also helpfully remind us that the only way to definitely prevent measles is to receive the vaccine. The fact that there is no link to Autism is mentioned as a small bullet point under a column entitled “Measles Facts”. The presence of such a bullet point is extremely annoying, for two main reasons; firstly, the continued linking of the terms measles, MMR, and Autism only serves to reinforce the notion that there ever was a legitimate link between those terms, and secondly, and most importnatly, the only reason that such a bullet point is needed is because of the irresponsible and lazy reporting by organisations such as the BBC in the first place.

You need only look in the archives of the BBC to find numerous articles about the MMR vaccine and its purported link with Autism. In 2004, they invited readers to comment on the idea that the vaccine had been declared “safe”, and while they make sure to tell us that the comments shown reflect the balance of opinion they have received, the inclusion of the word safe in inverted commas belies their alleged balanced view. Indeed, the BBC, like most other news sources at the time, reported extensively on the “discovery” that the vaccine was linked to Autism, and was neither cautious nor balanced in the headlines they published – “Child Vaccine Linked To Autism”.

The finger has been pointed at Wakefield, but the journalists, news channels, newspapers, and other pundits shouldn’t also escape blame. The media furore was what caused the spread of the story, about a paper which otherwise would likely not have been read by many, and this furore was caused by the media themselves. It is very easy for the BBC to report on the GMCs rulings about Wakefield, and to casually remind us all that the link has not been proved, but while the Lancet has issued a retraction, and admitted that the paper should never have been published, no news organisation has apologised for the part that they played in it, or issued a retraction for the irresponsible scaremongering that they engaged in. Every time an article like this is published, we are reminded of two things; one, irresponsible research and publication is damaging, and two, when it comes to reporting, there is simply no accounting for accountability.