Stuff that occurs to me

All of my 'how to' posts are tagged here. The most popular posts are about blocking and private accounts on Twitter, also the science communication jobs list. None of the science or medical information I might post to this blog should be taken as medical advice (I'm not medically trained).

Think of this blog as a sort of nursery for my half-baked ideas hence 'stuff that occurs to me'.

Contact: @JoBrodie Email: jo DOT brodie AT gmail DOT com

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Friday, 8 November 2013

Ought we to be writing to the local newspapers that wrote about #Burzynski fundraising efforts

There is recent news on the Burzynski Cancer Clinic based in Texas and it is not good.

Yesterday saw the publication of two documents from the FDA (the US Food & Drug Administration) which reported on an audit of the clinic. They noted that the clinic failed to take proper medical care of the patients and failed to keep appropriate medical records. This is serious because of the harm that can be done to patients when they are taken an unproven cancer treatment but is also worrying from the point of view of 'governance' (ie are the people running the show behaving in a competent way).
"Reports published by the FDA show unrecorded adverse events, failure to obtain proper informed consent, failure to disclose additional costs and systematic destruction of the very patient records that might establish whether the treatment works or not."
Source: WWDDTYDTY blog - Breaking: Burzynski inspection reports
Some of the larger newspapers have written about the clinic, some have reported on fundraising attempts and some have written about the controversial treatment at this clinic. As far as I'm aware a reasonable number of local newspapers have also written stories about families who are trying to raise funds to send family members with inoperable brain tumours to the clinic. My impression (and it might be wrong) is that local newspapers have written more favourably about the clinic.

Generally when doctors, scientists, skeptic bloggers or anyone else has been critical of the clinic's unconventional methods(1) - often in the comments section of favourable newspaper articles - people who've undergone treatment or are thinking of doing so feel threatened. That's understandable, though there can be no criticism of anyone who wants to try everything to save their life or that of someone else, only of the clinic itself.

I wonder if there's a list of all the local newspapers that have reported uncritically about the clinic and if we might write to them with this new information that makes it clear why the clinic's activities are a cause for concern.

The treatment is delivered in liquid form which includes a great deal of salt, raising the level of sodium in the blood (hypernatraemia). This can be fatal though is treatable, however it appears from the information in the FDA's records that there was a failure to treat this effectively, which is harmful.
"You failed to monitor as required by Section 1 6 of your Monitoring Plan. The investigator did not report adverse events (AEs) experienced by study subjects, including 18 cases of hypernatremia."
Source: FDA reports, cited in: WWDDTYDTY blog - Breaking: Burzynski inspection reports

Thanks to @harpistkat and @dianthusmed for comments on Twitter too.

For an uncritical report on Burzynski's methods and other people playing at helping people with cancer you might enjoy this article from the comedy health magazine 'What Doctors Don't Tell You' which Google has cached here: The new soldiers of the cancer war

Sadly that magazine has not exactly covered itself in glory where Burzynski is concerned and has reported his activities uncritically in other articles too. This is an example of the poor information in the magazines that have led both Waitrose and Sainsbury's to stop stocking this title (and to go on record stating that fact) in their stores in the UK, however you can still take out a subscription to the magazine on their website.

(1) For one, charging patients large sums to participate in what the clinic calls 'clinical trials' (but didn't seem to keep records for) is a fairly unusual situation. In some cases trial participants may actually receive a (usually small) payment for expenses and inconvenience.

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