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Very Very Scared!

Sep 16, 2001

I am scared, I am scared becaue I am unsure of what I am being told by others is true or not? I have been told by MD's and others that HIV is now managable and those infected can live can exspect to live to thier normal lifespan. IF this is true it would be great and it would help me a lot to know that it is true. I am affraid my MD who is a friend may be telling me this becaue he is a friend and wants to comfort me. The reason I doubt him is I read yesterday that 16,000 people died last year in the US from AIDS. If it is managable and people with HIV can be expected to live to thier normal life span why are they dying? Please help me I am very confussed and scared but know at least here I will hear the honest truth. Thank you

Response from Dr. Cohen

The reason we can be optimistic is that it appears that we are increasingly understanding the rules of what it takes to make treatment successful in stopping HIV. It takes just a few things to be in place:

(1) that we pick meds that are active against whatever strain of HIV you have. While most people start with a strain of HIV that is sensitive to all of our meds, some start with a resistant strain - and this is an even bigger problem when switching treatment for those on meds - since we need to find meds that are active despite whatever resistance already developed.

(2) The meds must be potent enough. The standard 3 drug combos are potent for most - but not for all. For example, those with a viral load of over one hundred thousand before treatment are harder to treat. Similarly, those with low Cd4 cell counts pre treatment are harder to control (in general, low means below 100-150 or so). We can compensate for this by altering which combinations we use - but this is a factor that must be considered when it is relevant.

(3) Someone must take the meds. This turns out in research to be the most frequent problem - because people simply forget to take meds every day each dose every day every dose each day... most of us are not programmed to take pills every day. So we come up with ways to compensate for this - but this is a big issue since "missing" is a common event... and has consequences.

Now if all these are in place - HIV is often controlled. And then we deal with any side effects of our meds. Which are real and not a small issue. And often lead to some missing doses... so our job is to compensate when we can for side effects - changing the combo to minimize whatever we can do...

There are other issues - including ensuring the drug levels are on target for all - this is a new challenge we are working on to decrease the problems of inadequate response to treatment.

So if this is all that is needed, why all this death? Well, these three rules are not so simple to implement - particularly those who have HIV resistance - finding enough active meds is often a problem we cannot fix. And so HIV then does what it used to do - destroy the immune system.

So it means we must not only learn the rules - but learn how to ensure that we can make them real for all who need them. Which means that research into new treatments is critical since some no longer respond to the current crop. Research into improving adherence - since some just have trouble even with the risks this high...

Hope that clarifies.

Stuborn HIV+

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