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Who's participating in HIV research? Share your story

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Hi everyone

As I prepare to go to the NIH for their LTNP study it reminds me of the fact that many here at our AM family participate in all kinds of HIV/AIDS research both here in the USA and around the world.
These studies cover a full gamet of aspects of HIV including resistance, LTNP, bio medical, psych- social, adherence etc. There are I'm sure many interesting and very personal stories as we collectively endeavour to help researchers in their varied fields on enquiry.
If you're participating in a study please tell us about  it. We're a big family here at AM and each story is important


I've just been accepted for a "one-time" blood draw for Dr. Ueda's studies.  We're having a phone conf with one of her assistants in the a.m. so i guess I'll go later this week or next for my draw.  My thinking is that if I have the "wonder-genes" then they'll want to study me a little more in-depth.


the only reason to be a guinea pig for any new drugs is if you have no options left or you have no insurance or way of paying for drugs. I have been in three and there is no reason to do it. I will always regret being in the crixivan trial  I was in, but I had no choice. what a fucking nightmare.

Paul, I thought about trials and studies at the beginning and really looked into it.  My Doc was very particular about what studies that he would ever place his patients on.   He runs the studies out of his office which was pretty great.   Given the fact I wanted to give something back, I enrolled in a very basic study of Kaletra/Truvada vs Kaletra/Epzicom.   Pretty tried and proven drugs.   My doc is an avid hater of Big Pharma and is an advocate for us HIV'ers.  I have great health care benefits so this was not my reasoning.  I just really wanted to be monitored really closely for the first couple of years and this HEAT study sounded great.  Absolutely no risk as far as my doctor was concerned and by the time everything is said and done, maybe they will come back with some interesting statistics on this particular study.   I don't think I would ever risk a trial, but down the road when my options have dwindled, at least I will know how study/trial operations go...   So far I love the hand holding and the extra care I get learning the ropes...

I first participated in the vaccine trials at the Vaccine Research Center (VRC) at NIH when I was negative 6 years ago. After being attacked, I seroconverted and the VRC transitioned me into the NIAID clinic where I participated in a new combo study and where I'm still treated today. A year later, I got the orange envelope from NIH stating that I recieved the placebo. Recently, I was asked to think about participating in another study that monitors the level of Sustiva overtime, but I haven't decided to or not (each time I go, being the small person that I am and having all that blood taken from me, I feel so exhausted afterwards --I've fainted twice!). But I'll definitely participate again when time and energy permits...they need more Asian participants anyway.


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