Sunday, December 4, 2011

What would you do if you were a celebrity Burzynski supporter?

Firstly, a quick redux.

Stanislaw Burzynski runs a clinic in the US which claims to be able to cure people of cancer. The treatment costs tens to hundreds of thousands of dollars although any evidence that the treatment has even the slightest effect is extremely hard to find .

I first heard about this story via a very moving and brave blogpost on The 21st Floor about the Hope For Laura campaign. This story follows a similar heartbreaking narrative to others, where someone has been diagnosed with some form of cancer at a horrifically young age, and a groundswell of goodwill and love erupts from those close to them desperate to help in whatever way they can. Places like the Burzynski Clinic can offer the miniscular glimmer of hope that they need to concentrate their efforts towards a goal. Other stories such as Billie Bainbridge have also been in the media in recent weeks.

Depending on the situation, a celebrity may end up promoting the cause - the campaign can be given a huge boost by celebrity endorsement and in my view, this is one of the most important roles that celebrities can play in return for their exulted status. Peter Kay put on extra gigs recently for Billie and also an EBay auction in aid of Billie included a guitar donated by Radiohead.

[For the full ongoing story of libel threats & the complete lack of evidence for what looks and sounds like quackery, Josephine Jones has a comprehensive list of blogs covering the story from many angles. A few key ones that I'd recommend are from Andy Lewis: The False Hope, and The Burzynski Clinic Threathens my Family, and also TiD buddy Rhys Morgan's Guardian Comment is Free piece.]

If you haven't come across this story yet, you can probably very quickly see the pitfalls - huge, disastrous and painful pitfalls that belie anyone not carefully appreciating the different situations that each person is in.

It's pretty clear to me from the complete lack of evidence, the aggresive libel threats, the fact it's not available on the NHS, the fact that Cancer Research UK say there is little solid evidence, the fact Burzynski also sells his own range of vitamin pills etc etc etc that this is not a treatment worth pursuing, and some of the blogposts above have discussed the thorny issue of whether false hope is better than no hope.

My own thoughts on this story come from a conversation with Mrs Dr*T about celebrity endorsement. (There are many other angles of morality and pyschology which are dealt with elsewhere). As I said above, this is a really positive thing that celebs can do (they get repaid in terms of goodwill, which will translate into sales of tickets or merch, but that's an acceptable agreement, I feel. It's an interesting point whether raising lots of money for an individual rather than a group or disease is the most efficient way to progress). Most of them are not trained scientists, and it takes a fairly disciplined sort of person to not immediately do what they can to help a dying child, but first putting in some research time to reach a rational decision.

To try and avoid the personalisation, let's imagine that a well-known celebrity with plenty of media purchase is asked to do a benefit gig/stunt/interview/whatever in aid of a person with cancer who wants to try and get enough money to go to the Burzynski Clinic.

After agreeing to do it, a fairly high profile story gets aired about how the clinic does not have robust evidence for its practices, and there are concerns that it is nothing more than expensive snake oil. (Stephen Fry, Ben Goldacre, Graham Linehan and many many others have been tweeting about this over the last few days).

The celebrity is made aware of this directly by tweets and conversations, which leads her to think about the benefit gig/stunt/interview/whatever that she did in aid of the patient.

If the tweetstorm is right, this is a pretty grim situation. She has an immediate choice - blank out the criticism, stick to the story. Bury her head in the sand. This is the one I think will be most common with the celebs. I should add that there's room in there for a lack of understanding on behalf of the celeb.

Let's say she doesn't blank out the criticism and does understand, but either does some research and takes some advice and feels she's done something that will do no good except fill someone's pockets with cash at the expense of painful goodwill. The ethics get altogether more fudgy. Our conversation led to the following options:

1. Don't give the money to the patient, give it to Cancer Research UK (e.g.) instead. Explain to family why. Risk massive backlash from media by not keeping promise to dying cancer patient.
2. Do give money to patient. Explain to family about the clinic and that if she'd known then what she knows now she wouldn't have done the event. Suggests spending the Cancer Research UK or improved quality of remaining life. Family still have choice and I reckon would probably still spend the money at the clinic.
3. Do give money to patient but on the proviso that it doesn't go to the Burzynski Clinic. Explain to family about the clinic and that if she'd known then what she knows now she wouldn't have done the event. Suggests spending the Cancer Research UK or improved quality of remaining life. Risk mediastorm about broken promises and attaching strings, not to mention legality.
4. Give the money to the patient and say nothing but make sure not to get caught again in the future. Everyone is happy apart from the celeb who knows that they have actively helped in funding something they feel is extremely dubious.

Mrs Dr*T and I settled on (2) after flirting around a bit with (4). Neither are satisfactory in entirety, because in both cases the money will most likely go to the clinic.

I'm interested in other options we haven't thought of - feel free to add them below.


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