/ 4 May 2005

An invidious form of Aids censorship

The Treatment Action Campaign (TAC) is taking legal action against what it sees as a charlatan flogging vitamins to people with Aids so that they can avoid taking anti-retroviral treatments which is said to be poisonous.

That is what the TAC does, and should do, so well. But there is a trap in this case and it lies in the use of individual words and concepts that have quietly become off-limits in writing about this disease and which have produced an invidious form of self-censorship in the field.

The words that form the trap in this case are ”vitamins”, ”nutritional supplements”, ”nutrition” — and of course, ”toxicity” and ”anti-retrovirals”.

By the end of the case, the TAC will look like a wholesale agent for the manufacturers of anti-retrovirals, and it is already being cast in that mould in this case. By the same token, anybody questioning ARV treatment without good nutrition will look like a garlic-and-African-potato salesperson.

Or to put that bluntly -— writing about the value of nutrition in HIV/Aids makes one the president or health minister’s lackey and punting the need for ARVs makes one a multinational drug company’s sales representative.

Not nearly enough has been written about the links between poverty and the spread of HIV/Aids because to emphasise the links would be to give cheer to the denialists.

Another example: the pressure to find medicines for the disease seems to have dampened a necessary development in journalism, which was at its height over the Thalidomide scandal some decades ago and which changed the way drugs are brought to the market with the safety of the public taking centre stage in this process. The scandal also gave the media a healthy scepticism of drug company behaviour.

ARVs are now part of ”fast track” plans to get medicines through the regulatory processes and to the market. The critical questioning of drug companies’ behaviour on ARVs has disappeared. Actually, not entirely. A reputable group in the United Kingdom, which publishes Drugs and Therapeutics Bulletin, questioned aspects of ARVs in the early days — and was immediately adopted by the denialists, who brought them to this country to discuss the long-settled issue of whether the virus led to the ”syndrome” — another pregnant word.

Because we need ARVs, and because they are a wonderful invention, does this mean that every manufacturer suddenly became flawless in its clinical trials behaviour, marketing and warnings to consumers? But aiming questions about clinical trials, marketing and warnings to consumers at nevirapine’s manufacturers, Boehringer Ingelheim, carries the stigma of being ”Manto’s lackey”.

The trouble with certain Indian generic ARVs and their bioequivalence properties should have prompted a few more questions like: Who carries the can when these drugs are substandard? Did the World Health Organisation put the drugs on its list without checking properly? Did the NGOs go on giving them out? Did the company concerned take out adverts in the local papers with batch numbers of the suspect drugs and get them off the shelves? It is much easier, of course, to bash the multinationals on price, but has anybody noticed how little innovation in HIV medication is being produced by these companies. Dare one ask whether this is related to price pressure without being labelled for this ”crime”.

I want to restate for the record that Aids denialists are to me no better than Holocaust denialists.

But I do believe there is cause for concern at the creeping censorship that makes writing properly about HIV/Aids difficult.

Pat Sidley, of the Council for Medical Schemes, writes in her personal capacity