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What's next?

Sep 25, 2005

Hello Dr. Young, Wohl, and Pierone,

I want to first let you know how much I appreciate your participation on this website. You have helped many people through quite a crisis, including myself. But on to my questions.

I recently discovered that I was HIV+ . I'm a 22 year old male, almost 23. This whole thing is still settling in but I'm doing okay. Luckily I have friends in similar situations to coax me through this. I have an HIV-negative partner of three months now who is quite scared, but dealing, and we are giving eachother support through this.

I don't have medical insurance and so I recently enrolled with a UCSF study so I could acquire free lab work and advice. From what I understand I'll be able to get free meds through the Ryan White Fund until my benefits at my job start in about 30 days.

The main question here is, when do I start treatment? I have heard several mixed theories from different individuals on what to do. I have definitely made the choice to take HART as soon as possible, but I am scared that this will impair my abilities to impact the viral load later on in life. I'd presume that the best thing to do would be to wait to see how my labs look when they come back in about a week before making any critical decisions. The woman at the UCSF study informed me that there is no concrete evidence to support whether early treatment provides any real benefit over waiting, but in my mind it only makes sense to arrest the viral load immediately before any permanent damage starts to take place. Would you be able to offer any input on this topic? I'm young and still have a long life ahead of me, and would like to make the right choice to ensure that happens. We all die sometime, and chances are something else will snatch me from this world before HIV does. This is something I will have to deal with possibly for the rest of my life, but anything I can do now to ensure that it won't become too much of a hindrance later on would be much appreciated.

Also, would you be able to reccommend any health care provider where I can find access to a good nutritionist, HIV specialist, and hopefully free medications? Any well-reputed support groups would be great too.

I won't lie, I'm terrified, but for the moment it's manageable. It's very tough for me to give myself the support I need and be that support for my boyfriend as well. I referred him to this site and he has done a bit of reading which seems to have him heading in the right direction.

Alright well, I seem to be rambling here. I'm confused as to what the next to take is, and so on and so forth. Any words of wisdom you could offer would be most appreciated. Thank you so much.


Response from Dr. Wohl

You are right, deciding when to start HIV therapy is confusing. There has been a major shift over the years to delay therapy and now we are seeing a swing back the other way. Part of the issue is the limitations of the data we have to work with. There just aren't the kind of large longer term studies we need to determine exactly when is the best time to start HIV meds given the currently available crop of HIV therapies. As you can imagine, such a study would take many years and the treatments would advance while we waited for the results.

What we do know is that starting HIV meds below a CD4 cell count of 200 is to be avoided. The risk of bad things happening is higher when CD4 cell counts are low despite HAART initiation. There are some good data suggesting start of therapy around a CD4 of 350 produces best results. Would starting at even higher CD4 counts yield better outcomes? It's not clear and the enthusiasm for early treatment is tempered by the side effects (short and long term) and the risk of failing a regime or two and then finding yourself with a high CD4 but a multi-drug resistant virus.

If we had a simple, potent (and cheap) therapy that had very low risk of resistance development and no side effects, we would be treating everyone after HIV diagnosis. We do not have such a silver bullet but as we nudge closer the starting line moves to higher and higher CD4 cell counts.

Let's see what your CD4 and viral load are and then I will tell you what I would do if I were you.

As far as the other services you asked about, I have limited first hand knowledge of Bay Area resources but you know, of course, that you probably have more access to such help than those of us not as fortunate to live in such a wonderful city. I would ask at the clinic you are going to. I expect you will have much to chose from.


Returning KS and undetectable viral load
GEMINI study (Truvada study)

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