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Sunday, 7 June 2009

A respectful disagreement with Ben Goldacre (and Jack Pickard)

Abacavir - a nucleoside analog reverse transcr...Image via Wikipedia

A post by my friend Jack Pickard calling alternative therapies mere placebos, echoing Ben Goldacre's arguments, has prompted me to write about a painful part of my past.

I should say first that I admire Goldacre, author of Bad Science, for his work on nailing down tricksters who sell stuff which doesn't do anything and has no science to back it up. In particular his posts about the media-driven hysteria around MMR.

Back in the 90s I worked with a therapist friend on testing whether any alternative therapies would help relieve AIDS symptoms. I could see that some of them did help and this makes sense as much conventional medicine is derived from nature: this is why drug companies send people out to indigenous peoples to find new therapies from amongst their traditional medicines, a process known as bioprospecting.

My generation of gay men, until the first effective medicine started to appear in the mid 90s, faced multiple funerals and would look at anything which might help.

When the efficacious medicines started to appear I witnessed something close to the sort of desperation I could imagine occurring in an Ethiopian refuge camp as the emaciated fight for the last scraps of food and water.

Two things in particular stick in my memory and my throat.

I had friends who literally were making choices between medicine, rent and food - they were poor. They did not have boyfriends or family to support them, they were isolated. Some were literally growing their own food. The largely middle-class and highly educated people living with HIV/AIDS who ran the decision making bodies and sat on government advisory panels only cared about drug trials, they refused to see that before those breakthroughs they were waiting for others would die from such situations and the stress they engendered.

When the drug trials really took a turn towards what would eventually become the therapies which keep people alive today the drug companies decided who lived and who died. Amongst those who couldn't get on them were women, 'because they might become pregnant'. It didn't matter if they were lesbian, as a friend of mine was, to protect themselves and maybe for scientific reasons, women had to be turned down.

The biggest problem myself and my friend faced in trying to produce science on alternative therapy was the impossibility of getting funding or any support to test them.

The system for 'proving' the efficacy of a substance is radically bent against the ability of alternative therapies to do that as it is so expensive, even simple blood tests - we had to do this by cheating or with the help of a few sympathetic doctors.

Unfortunately the experiment came to an end with the premature death of my friend. But I know others around the world at this time who were trying similar experiments and - much as the use of marijuana has been shown to be effective against glaucoma - despite all the odds there is scientific proof that some alternative therapies do work to relieve AIDS symptoms.

So it is a plain fact that alternative therapies are not all placebos.


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