Open Data Campaign

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"

A call to arms: Why pharmacists should call for Open Data

Pharmacists of the world, unite and take over.

Pharmacy has been hit hard over the past few weeks. We've had MPs accusing us of being smartie counters, and a badly written BBC News expose implying that we are all merrily dealing benzo's to make a quick buck. (I may attempt another blog post on this at some point)

I believe that historically, pharmacy has drawn the short straw. In my opinion. our professional body, the Royal Pharmaceutical Society, seems to lag behind other bodies when it comes to media savviness, and it often feels like we have very little impact or voice when it comes to the healthcare profession as a whole. Even now, its still a rare occastion that a pharmacy-related story will actually have a pharmacist commenting on it in the news- GPs, doctors and nurses are simply much more vocal and recognisable to an audience. 

But here is an opportunity, and it has been handed to us on a silver platter by Ben Goldacre and the BMJ. I'm sure you may have heard by now, but there is a pretty large campaign on the go to allow for more transparent reporting of clinical trial data. This has been prompted by the case of Roche's Tamiflu, but its wider implications on patient safety and care are huge.

All the information you need about the BMJ's Open Data campaign can be found here.  

Today I tweeted Ben Goldacre to ask what involvement there has been from the pharmacy bodies. The answer? A big fat zero. There has been no involvement at all, from any of them.

So here is my call to arms. If you are a pharmacist, or if you are affiliated with the pharmacy profession, lets contact the RPS, the GPhC, NPA, PSNC, and anyone else who will listen. Lets tell them how important this is to us and how we want them to represent us and get our voice heard.

After all, to be experts in medicine, we need to have access to information about medicine. And that information has to be accurate, reliable, accessible, and unbiased. Without open data, we simply cannot do our jobs properly or with the degree of safety that we would like to. It may seem like a trial not being published is far removed from handing over a prescription to a patient over the counter, but the fact of the matter is that patients are dying due to the lack of transparency. How can we counsel a patient on side effects, for example, when patient level data from trials has been withheld? How can a patient be prescribed the best medicine for their condition when most of the trials involving the drug haven't been published? 

Moreover, what a great way to represent ourselves as a profession who, more than anything, care about the health- and safety- of our patients, and who are willing to speak up when it counts. What a fantastic opportunity for our professional bodies to prove what they can do. 

H xxx