A respectful disagreement with Ben Goldacre (and Jack Pickard)

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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.

Health sites and memories

A friend pinged with with info about a patient community website he'd just found; Patients Like Me.

He'd found it very useful to exchange experiences and information with those with his condition. I had a look around the site and found thriving communities, including one for HIV/AIDS.

This took me right back to two decades ago (gulp) when the first internet responses to AIDS appeared. In the early 90s I edited a magazine which needed the latest research information. This, literally, came off the boat, so was several months old. So when I encountered the net it was with astonishment that all this info was there and brand new!

The info was pure text and basically a fairly unusable, certainly unsearchable, database interface. But it was astonishing.

What I was looking at was the AIDS Education Global Information System (AEGiS), which is now the world's largest Database of AIDS information. (The only resource larger is the U.S. National Library of Medicine, but it only offers some of its information on a website).

Since 1992, AEGiS has sought out scientific abstracts from local, regional and international AIDS conferences, related news, reports, and journal articles and compiled them a fully-indexed, cross-referenced and keywords searchable database.

The site is deliberately light on visuals that would make it difficult to access for those with slower computers.

It was originally started as a small electronic bulletin board system (BBS) by Jamie Jemison in 1986. Sister Mary Elizabeth Clark, a transsexual pioneer, and US Navy/US Army veteran took it over in 1990, inspired by meeting an isolated young man with AIDS in rural Missouri. Under her direction and tireless effort, the database grew and grew.

She worked 18-hour days from the living room of the mobile home she shared with her aging parents. It sits just across San Juan Creek near LA from the new 1,700-square-foot office, which Clark's 93-year-old father, Ed, happened upon and recommended for AEGiS just months before he died. They moved into that office only a few years ago.

AEGiS is nowadays funded by the US National Library of Medicine, Elton John AIDS Foundation, Boehringer Ingelheim, Bristol-Myers Squibb, John M Lloyd Foundation, Roche / Trimeris, and the Bridgestone/Firestone Trust.

Sister Clark is one of my heroes, a real web pioneer and a true inspiration.

She's received many awards including the 'Award of Courage' from the American Foundation for AIDS Research, and the Human Rights Award from the International Assn. of Physicians in AIDS Care. AEGiS was nominated for U.N. honors in 1999, 2001 and 2003.

Another hero and inspiration is epidemiologist Elizabeth Pisani.

HIV/AIDS work is very political, including in affected communities, and that slants priorities and funding.

A good example would be the lack of promotion for many years of a 'negative' status for gay men - it was seen as somehow undermining HIV+ gay men. I suffered a lot of grief for that view when I worked in the area.

Pisani talks a lot of sense on these sorts of topics:

The problem, Pisani says, is that 80% of the Pepfar (Bush's AIDS initiative) budget goes on treatment. "Pepfar says great, we've got 1.8 million people in treatment. And next year it will be another 1.8 million! That will mean 3.6 million people. It's exponential - and that's the biggest question mark over the entire approach to Africa. The more treatment you have, the more infection you get."

ARVs [antiretroviral drugs] reduce people's viral load, she agrees, making them less likely to infect someone else - as long as they don't miss a single dose. "But it also keeps them alive longer, and healthy enough to want to have sex. You only have to look at the experience of the UK or US gay communities where we've had more or less universal access to ARVs for at least eight or nine years, and the number of new infections are rising. More people are living longer with HIV, and there is what we call behavioural disinhibition: 'Fuck the condoms, I don't need them any more, because if he's positive he'll be on drugs, so he probably won't infect me. And if I do get infected, it would be annoying, but not the end of the world.'

"But having Aids is not a picnic. Yes, it's great that all this stuff on treatment is happening. But it becomes all the more urgent to have effective prevention. And that's not happening."

"Is not a picnic" is putting it mildly, you can expect to live around 25 years on ARVs. It makes me despair that so many young gay men are condemning themselves to shorter lives without a single clue that this is what they're doing by ignoring the condoms. Plus the government is cutting back on preventions spend.

Pisani did a few interviews in the UK last month for her brilliant book The Wisdom of Whores: Bureaucrats, Brothels, and the Business of AIDS.

On News24's HardTalk, professional dick Stephen Sackur spent a lot of time quizzing her about 'mafia connections'.

• You can watch the interview here (23 minutes, RealVideo)

By contrast Andrew Marr, was more interested and asked great questions.

Her blog is also called The Wisdom of Whores.