I was asked to clarify the research question I'm here to study... following is my explanation if you care to get into more details (sorry, no photos for this post!):
Well, I did over-simplify the question a bit for the blog.
The question is really: do people want more access to the first-line drugs, or would they prefer less access to the first-line but guaranteed access to second-line drugs if they become resistant to the first line? This is a little more complicated. When an HIV infected patient needs to go on anti-HIV drugs, we start them on "first-line" drugs (same as you start your first-string players in a game); if they fail because the virus mutates or there is a side effect we can give these patients our "second-line" (which may also fail, but if you don't put them in you forfeit the game).
It turns out that the second-line drugs are ~10-20x as expensive as the first-line drugs. In the US we say "who cares? we can pay so second-line for everybody that needs them". However, in Sub-Saharan Africa, only 1 in 10 people who need drugs get ANY drugs. This is the reason that HIV is a chronic disease in the US but a death sentence for 9 in 10 HIV infected persons in Sub-Saharan Africa.
So, why the heck am I working at a Bioethics center? Well, we have a question about distributing severely limited resources that will determine who lives and who dies. This decision has a very strong moral dimension.
Imagine that you're the captain of a ship (the Titanic 2) that just got hit by an iceberg; it is going down in the freezing Atlantic and your first-mate sheepishly admits that not only are there barely enough life rafts for 1 in 10 passengers... some of the life rafts are also way beyond their life expectancy and so they will certainly sink. Since the supplier Rafts-R-Us never bothered to label which ones are old and which new, we do not know which will sink and which will float. Although an obvious solution is to randomly distribute what rafts they have and accept that some will drown when the bad rafts spring a leak, another solution would be to put an extra life raft aboard some of the rafts in order to give those lucky enough to get on any raft a second chance in case the first raft starts to sink.
This analogy fails because doctors claim that they have an ethical responsibility not to let their patients sink if they get on a raft. Docs would say that all rafts should have a backup; they say this because their contract is with the individual patient and letting the individual patient drown would be abandonment, even if such a policy would overall end more lives.
But what if the passengers were all gathered on the slowly tilting deck of the sinking ship while the band played and unanimously said that they wanted the rafts to be distributed one way or the other? That is what we want to know- 1) whether there is consensus among patients about distributing their drug life rafts and 2) what should we do with that information- does it negate the physician ethic of non-abandonment because you are giving the patients what they would prefer?
Oddly, nobody has ever asked HIV-infected folks in Africa, where HIV has been doing the most devastation, what they prefer as the ship goes down.
Sunday, June 3, 2007
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