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Matthew Dingman

I've read Project Inform's statement. While paying lip service to values that no one can disagree with, such as the right of HIV positive people to health, the right to choose to be tested and treated and the principle of informed consent, all these values are in fact trashed as one reads through the statement. Choice that is not informed, and worse, misinformed can be seen as coercive. There is disagreement among experts about the value of starting treatment between 350 and 500. Yet this document, in giving arguments favoring an early start, is unbalanced, and far from what PI claims. The document is in this way disrespectful of the rights of HIV infected individuals and can even be seen to be abusive. They say treatment should be offered within the limits of the NIH guidelines. Why? They don’t say that the NIH guidelines are the only ones in the world advocating a start at 500, even higher depending on interpretation. Do they warn individuals that many of writers of these guidelines have financial arrangements with entities that stand to profit from their decisions. Or is it too controversial to even suggest this? At the end they say they support START. How can they be serious? If their advice is followed, START has no hope of enrolling. They pay lip service to values no one can disagree with, including a respect for evidence-based recommendations, but then go to make specific recommendations that are insults to these values. Respect for people means truly accepting their right to full information when making a choice. Full information means stating that there is disagreement when this is the case. Presenting arguments for and against. That the best evidence to help decide is not available when this is the case but could be obtained (through the START trial). Belief, even belief by Project Inform, is no substitute for information that could be obtained from appropriate trials. Asking people to accept what Project Inform believes actually hinders finding out what is true. The NIH guidelines, far from being held up as some sort of paragon, are a disgrace. They are the shameful confused results of a corrupt process. They ask: “Is it ethical to ask people to engage in treatment as prevention?” Of course it is. What’s not ethical is to deprive people of clear and honest information to inform their decisions.

May 19, 2010