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Author Topic: Who's participating in HIV research? Share your story  (Read 5298 times)

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Offline OzPaul

  • Member
  • Posts: 414
  • a very blessed 39 year ’elite controller’ EC
Who's participating in HIV research? Share your story
« on: June 12, 2006, 01:20:24 pm »
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

« Last Edit: June 12, 2006, 05:04:24 pm by OzPaul »

Offline Basquo

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  • Posts: 3,385
Re: Who's participating in HIV research? Share your story
« Reply #1 on: June 12, 2006, 04:56:40 pm »
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.


Offline jack

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  • fomerly the loser known as Jake
Re: Who's participating in HIV research? Share your story
« Reply #2 on: June 12, 2006, 06:43:05 pm »
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.

Offline Life

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  • Posts: 2,389
  • Member 2005
Re: Who's participating in HIV research? Share your story
« Reply #3 on: June 12, 2006, 08:36:17 pm »
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...

Offline terpie82

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  • Posts: 100
Re: Who's participating in HIV research? Share your story
« Reply #4 on: June 12, 2006, 09:15:02 pm »
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.
Diagnosed in 2003
UD since 2004 and >35%
Three-month treatment interruption for NIH study and back on Stribild 1/8/16

Offline TedEBearNC

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  • ~Cuddly~
Re: Who's participating in HIV research? Share your story
« Reply #5 on: June 12, 2006, 09:45:23 pm »
I go Fri. for my blood draw for Dr. Ueda's studies.  I think I'll have them draw for my regular tests at the same time so I won't need to have another the next week.  We'll see if anything more comes of it.
Member since March 2004

Offline Blixer

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Re: Who's participating in HIV research? Share your story
« Reply #6 on: June 12, 2006, 09:54:20 pm »
I just started meds two months ago. I have good health insurance benefits but decided to participate in a study because I've always been an advocate for research and the study I was in was looking at sustiva or reyataz combined with epzicom or truvada.  It was a double blinded study but after all my research all four possible combinations were considered first line and great.  Unfortunately, I suffered some intolerable rare side effects (extrement pain) and the fact that the study was double blinded actually slowed down my doctors response to my situation. I'm also not one to complain, so I may not have let them know how bad things really were.  I was removed from the meds and the study was unblinded.  A different med was substituted for the most likely culpret but I've still had significant pain.  When I went into the study I was under the impression that if there was a seroius side effect I could just be switched to another arm. That is not the case.  I can stay in the study and have some other drugs substituted, but I cannot be placed on a combination that would be equivalent to one of the other arms.  So that immediately removed two other potential combinations that might have been better for me.  It has caused me to lost some confidence in my doctor and made me question whether I'm getting totally unbiased treatment.  Only time will tell. I'm still in the study with Videx EC substituted for the abacavir that was considered the most likely culpret.  Hindsight is always great.  Knowing what I know now, I probably would have skipped the study and just started with Sustiva and Truvada.  But, one of the purposes of the study was to look at the tolerability of the combos.  And they should have some excellent data from my experience.  I'm also a bit disappointed that after going through all that I've been through my VL is still 414 and not undetectable after 8 weeks (only 5 on meds though, there was a 3 week break in there).
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline Christine

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Re: Who's participating in HIV research? Share your story
« Reply #7 on: June 13, 2006, 10:46:16 am »
A few weeks ago I screened for the GS-9137 Integrase Inhibitor. I passed the screening, and have another screening appointment on Friday.

I have been in other studies- Crixivan, TMC 114, and T-20 (fuzeon). I believe in research, and feel it is a way to help others.
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline OzPaul

  • Member
  • Posts: 414
  • a very blessed 39 year ’elite controller’ EC
Re: Who's participating in HIV research? Share your story
« Reply #8 on: June 13, 2006, 11:36:40 am »
Thanks Christine, TedEBear, Minh, Eric, Jack and Basquo for writing about you're experiences !!

I believe  that through these individual efforts working in tandem with researchers that we have made the progress we have since the very bad old days of the 80's and early 90's. Without these stories of participation and sometimes sacrifice as to our health we would not have the medications we have today. Every story, every persons experiences are important, equally.

I'm looking forward to reading more stories as I know that amoung our AM Family there are many more HIV research tales to be told.

With Peace and Love


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