The Burzynski Connection

There's an event coming up in Newcastle that I'm really looking forward to. There's a lot of excitement about Street Spice, a street food festival coming up at the end of February, dedicated to celebrating world spices and food. And, to make it even better, its being held to raise money for charity- Brain Tumour UK.

So how does this fantastic event cross over into the murky realms of Dr Burzynski's work? Many others have covered the Burzynski debacle much better than I would ever be able to do. If you do want to know more about it, I recommend starting at Josephine Jones' blog, as she has a pretty extensive list of her own blogposts, along with those written by many others in the skeptical community.

The event is being held in memory of Kuly Ral, who died of a brain tumour. I know very, very little of this chap, except for the information given on the Street  Spice website:

"Kuly Ral made up one third of super Urban-Bhangra group RDB when his devoted family and Three Records label colleagues discovered that he had a terminal brain tumour. Although Kuly sought to get treatment in America for this, it was not to be:"

It's a very sad fact that my heart sinks every time I read or hear the words "treatment in America" for cancer. I can't help but dread that it means Burzynski's clinic, and with a bit of digging, it seems that in this case it was indeed Burzynski's clinic that Kuly was receiving treatment from when he died. I know nothing of the circumstances of his treatment, or how he died, but given that Burzynski supporters have been known to use the names of dead patients as testimonials for successful cancer treatment, showing no respect whatsoever to the deceased or their loved ones, I'm frankly amazed that Burzynski and his cronies aren't shouting from the rooftops about how they were treating such a high profile Bhangra personality. (In the past I have emailled the Burzynski Patients Group to ask if they were going to take down the name of a patient who had been dead for months. Unsurprisingly, I received no reply.)

I'm making no judgement here on anyone who would choose to go to Burzynski. I'm also still really happy to be going to any supporting the event, as it's raising money for Brain Tumour UK rather than for Burzynski himself. The person who I judge the most in this situation is Burzynski himself, who seems rather happy to be making his millions providing unproven treatments, deceiving patients, making shoddy movies, and claiming an FDA conspiracy, when he could quite easily silence his critics-and the FDA- by simply publishing the results of his "clinical trials". If he spent half the time he spends on shameless self-promotion by sitting at his desk and actually writing up some results, then at least he could back up all of his miraculous claims, and all of us who are critical of him would have to sit down, shut up, and happily accept that there is a cure for cancer on the market. 

So here is my own tiny little memorial to Kuly Ral. It takes the shape of a simple plea, and goes thus:

"Dear Dr Burzynski,

Please publish the results of your trials.

Its the least you could do"

Alternative medicines and brain tumours

There's been a lot of press attention in recent days about the case of  Neon Roberts, whose mother had apparently ran away with him in order to avoid him being given post-surgery radiotherapy.

I will admit at this point that I haven't looked too closely into the case. I'm writing this on my lunch break so don't have time to go into all the details, but it appears that after being found, Neon has been taken into foster care and has been given the treatment he requires.

If the press reports are to be relied upon (and bear in mind my main source is the Daily Fail), this seems like a striking case of the sort of harm misinformation about alternative medicines can cause. Reportedly, the mother only wanted him to receive "natural remedies" as he recovers from his surgery. The implication is that natural remedies would be safer for the child, whereas conventional treatments like radiotherapy and chemotherapy are evil, toxic poisons.

And yet this distinction between "natural" and conventional medicines is highly blurred, particularly when it comes to chemotherapy. Some of our most powerful (and potentially toxic) chemotherapeutic agents are derived from plants- the taxols for example. Ultimately, the main difference between these agents and alternative medicines is that they have been tested and have been proven to work. If other natural, alternative medicines went through the same testing processes and also had positive results, they too would cease to be alternative and would become conventional medicines. Radiation, similarly, is an ultimately natural process. So how do the public at large decide what constitutes a "natural" remedy? We can see from this case the potential consequences of such misinformation.

Another thought that occurs to me is the distinction between complementary and alternative medicines. I think we can all agree that there is a potential benefit from some natural remedies for some cancer-associated symptoms or problems. So as an example I have no problem with a patient who decides to try a herbal remedy to treat say anxiety alongside their conventional treatment, providing they are doing so with a knowledge of the pros and cons of the treatment, and with their healthcare provider's knowledge. Complementary therapy, in other words. What's infinitely more worrying is the concept of alternative therapy, e.g. where a patient makes a decision to not use conventional medicine but to use a herbal remedy(or homeopathy, or acupuncture etc) instead. The evidence base for alternative medicines is absolutely nowhere near the level required to justify a patient using them instead of conventional medicines for something as serious as cancer.

And this brings me on to homeopathy. Yes, homeopathy again. I'm not going to cover how homeopathy works, as its been done much better at this site: http://www.howdoeshomeopathywork.com/ . What is particularly worrying about this modality is the advice given that conventional medicines need to be avoided to allow the homeopathy to work. This is bandied about in an inocuous sort of a way by websites such as this. So, by recommending a homeopathic treatment for a serious condition, homeopaths are directly harming their patient by encouraging them to not take conventional medicines (which may have a chance of working at least) and to replace them with Magic Woo Memory Water Sugar Pills (which have zero chance of working). One of the most heart-breaking things i have ever read on the internet are the letters of Penelope Dingle to her homeopath, who treated her pancreatic cancer. If you haven't seen this already, I highly recommend that you have a look, but warn you that it is likely to induce tears, then rage.

I've noticed that a few homeopaths on twitter have already picked up on the story of Neon Roberts, and are gleefully tweeting things like "UK Boy to Be Forced Into Chemotherapy" (forgetting the fact that it's actually radiotherapy that he will be receiving). Of course I'm Not Actually A Doctor Nancy Malik is involved. So I thought I'd have a look at what evidence there is that homeopathy can treat brain tumours, before they all start claiming that it can. So I've checked Medline and Embase, the leading medical literature databases in the world. My search stratedy was: Search for homeopathy. Search for brain tumours, and limit to therapy or treatment. Add the two together. See what comes out.  Makes sense, right?

So here are the results for EMBASE (links are only available to athens users):

	1	EMBASE	*HOMEOPATHY/	4263
	2	EMBASE	BRAIN TUMOR/dt, th [dt=Drug Therapy, th=Therapy]	7758
	3	EMBASE	1 AND 2	0

And here are the results for MEDLINE:

	1	MEDLINE	HOMEOPATHY/	3941
	2	MEDLINE	BRAIN NEOPLASMS/th [th=Therapy]	7433
	3	MEDLINE	1 AND 2	0

Now, you don't have to be an expert in literature searching to realise that that's a bit fat zero.

I'm Not Really A Dr Nancy Malik, however, has other ideas, and has helpfully sent me links to 4 sources that she claims are evidence that homeopathy can work in brian cancer treatment. Three of which are studies looking at  tissue cell culture, and one of which is for treatment of side effects (ergo as complementary, rather than alternative therapy, and which bears no resemblance to whether or not it could actually treat a brain cancer). The in vitro studies are very interesting i'm sure, but to use them as evidence that homeopathy can treat brain cancers in humans is an enormous stretch. With something so serious, would you really be willing to base a treatment decision on what happens to a couple of cells in a lab? Or would you rather base it on what happens to thousands, if not millions of other people in real-life? I know which one I would go with.

One other footnote to this news story is one which I fear may have been forgotten about. Imagine being a child, who has just undergone surgery for a brain tumour. Imagine the fear this poor boy feels on a daily basis, not to mention how physically ill he may be. Now imagine being taken by your mother on a trip elsewhere, then being taken into foster care and having to be given radiotherapy, whilst a court case battles on around you. I can't even begin to imagine what this child is feeling. This time would have been bad enough for him as it was, without any of this being added onto his trauma.