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Author Topic: Cure Research Survey  (Read 3516 times)

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Offline Tim Horn

  • Member
  • Posts: 799
Cure Research Survey
« on: December 06, 2011, 08:14:13 AM »
Hi Everyone...

I've been working with David Evans and a few other amazing activists on a survey they've developed regarding participation in cure-related HIV research. In short, they need as much data as possible as they begin the process of talking with researchers and U.S. Food and Drug Administration officials about the ethics of cure-related clinical studies that may likely require a great deal of altruism (many approaches being evaluated may not offer up an personal benefits to study volunteers, at least not initially) and may involve some degree of risk.

Questions Toward a Cure

If everyone could take a few moments to complete the survey -- it shouldn't take any longer than ten minutes -- the information collected will go to good use. Not only will it serve as the basis of many conversations in the months (and years) ahead, the responses will be reviewed and presented at (or immediately before) the International AIDS Conference this summer in Washington, DC.

Thanks much,

Tim

Edited to add: David has also blogged about the survey. Click here.
« Last Edit: December 06, 2011, 09:06:45 AM by Tim Horn »

Offline phildinftlaudy

  • Member
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  • sweet Ann what you think babe...
Re: Cure Research Survey
« Reply #1 on: December 06, 2011, 08:34:14 AM »
Thanks for the info and link Tim!
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Basquo

  • Member
  • Posts: 3,254
Re: Cure Research Survey
« Reply #2 on: December 06, 2011, 09:26:09 AM »
Tim, I was not able to complete the survey. There are questions that require answers but are not applicable to all respondents.

For example:

9. If a study would require you to go off of your ARV medication for a period of time, which might carry health risks, how willing would you be to participate?

I guess I could pretend I might be on ARVs at the time of the study and answer that way.

26. Have you experienced side effects from antiretroviral medications?

No option for "I've never taken antiretroviral medications." So I guess truthfully, the answer would be no, but I don't feel it applies to me.

27. If you experienced side effects, how serious where they?

This required question is written as an "If" question but give no option for expressing "If" the respondent had no side effects or has never taken ARVs.

And by question 28 I began to wonder if the survey was still asking about ARV medications or medication in general.

I was hoping to reply with "Done" but I'm not. Sorry.

Offline Tim Horn

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  • Posts: 799
Re: Cure Research Survey
« Reply #3 on: December 06, 2011, 09:27:43 AM »
Tim, I was not able to complete the survey. There are questions that require answers but are not applicable to all respondents.

For example:

9. If a study would require you to go off of your ARV medication for a period of time, which might carry health risks, how willing would you be to participate?

I guess I could pretend I might be on ARVs at the time of the study and answer that way.

26. Have you experienced side effects from antiretroviral medications?

No option for "I've never taken antiretroviral medications." So I guess truthfully, the answer would be no, but I don't feel it applies to me.

27. If you experienced side effects, how serious where they?

This required question is written as an "If" question but give no option for expressing "If" the respondent had no side effects or has never taken ARVs.

And by question 28 I began to wonder if the survey was still asking about ARV medications or medication in general.

I was hoping to reply with "Done" but I'm not. Sorry.

Excellent feedback. Will let David and the others know ASAP.

Offline wolfter

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Re: Cure Research Survey
« Reply #4 on: December 06, 2011, 09:29:25 AM »
I have not been able to find the survey yet.  Must be that cognition thingy this morning.  I'll try again in a little while.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Tim Horn

  • Member
  • Posts: 799
Re: Cure Research Survey
« Reply #5 on: December 06, 2011, 09:30:45 AM »
It's hyperlinked in the AIDSmeds story above.

Here's the direct link to the survey:

https://www.surveymonkey.com/s/V26FVKZ


Offline aztecan

  • Member
  • Posts: 5,394
  • 29 years positive, 57 years a pain in the butt
Re: Cure Research Survey
« Reply #6 on: December 06, 2011, 09:55:30 AM »
OK, completed the survey.

I'm probably too old for clinical trials, but it was interesting anyway.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline leatherman

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Re: Cure Research Survey
« Reply #7 on: December 06, 2011, 10:18:37 AM »
done ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Jeff G

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  • How am I doing Beren ?
Re: Cure Research Survey
« Reply #8 on: December 06, 2011, 10:49:12 AM »
Done !

Offline emeraldize

  • Member
  • Posts: 3,343
Re: Cure Research Survey
« Reply #9 on: December 06, 2011, 11:17:32 AM »
27. If you experienced side effects, how serious where they?

This required question is written as an "If" question but give no option for expressing "If" the respondent had no side effects or has never taken ARVs.


Same experience as Basquo - forced an answer in order to move on. Completed with nearest option to none which was mild.

Offline PozJeepGuy

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  • Posts: 249
  • Facebook - Jacob Perry
Re: Cure Research Survey
« Reply #10 on: December 06, 2011, 11:28:36 AM »
I have to say I'm glad someone is asking these questions. I remember someone on here recently starting a thread about how nice it was starting meds and how easy it was.  Well it's not like that for all of us. I don't regret doing a drug study but with that first round of meds being as horrible ( yes I mean horrible)  folks need to really think about joining a drug study.   It unfortunately has left a bad taste for meds for me and relunctly 6 months later just now starting a new regiment.
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline bufguy

  • Member
  • Posts: 161
Re: Cure Research Survey
« Reply #11 on: December 06, 2011, 11:37:18 AM »
Thanks for the survey...It's actually very thought provoking...I'm on meds now, doing quite well, yet I want to contribute to better treatment and ultimately a cure...What am I willing to sacrifice to do that?
At the very least I hope one day to be challenged by that question.
5/29/08 confirmed HIV+
6/23/08 Vl 47500  CD4 511/29% CD8 .60
start atripla
8/1/08 Vl 130  CD4 667/31% CD8 .70
9/18/08 Vl un  CD4 not tested
12/19/08 Vl un CD4 723/32% CD8 .80
4/3/09 Vl un CD4 615/36% CD8  .98
8/7/09 vl un CD4 689/35% CD8 .9
12/11/09 vl un CD4 712/38% CD8 .89
4/9/10 vl un CD4 796/39% CD8 1.0
8/20/10 vl un CD4 787/38% CD8 1.0
4/6/10 vl un CD4 865/35% CD8 .9
8/16/10 vl un CD4 924/37% CD8 1.0
12/23/10 vl un CD4 1006/35% CD8 .9
5/2/10 vl un CD4 1040/39% CD8 .9
8/7/13 vl un CD4 840/39% CD8 .9

Offline AlexMerida

  • Member
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Re: Cure Research Survey
« Reply #12 on: December 06, 2011, 12:22:09 PM »
done !

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Cure Research Survey
« Reply #13 on: December 06, 2011, 12:22:41 PM »
I also cannot complete the survey for the same reasons as Basquo.

Please let us know if David will be revising the survey to accommodate those of us who are treatment naive but would be interested in participating in cure research. Thanks!
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline GSOgymrat

  • Member
  • Posts: 5,009
  • HIV+ since 1993. INTJ
Re: Cure Research Survey
« Reply #14 on: December 06, 2011, 12:31:10 PM »
Done.

Offline spacebarsux

  • Member
  • Posts: 1,350
  • Survival of the Fittest
Re: Cure Research Survey
« Reply #15 on: December 06, 2011, 01:04:54 PM »
Done.

I'm also treatment naive- so the same problem as Ann and Basquo.

Also, I don't know whether people from the Indian Subcontinent are covered under the ethnicity "Asian"- as per the American definition of that term.  ;). I ticked it anyhow.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline weasel

  • Member
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Re: Cure Research Survey
« Reply #16 on: December 06, 2011, 01:36:46 PM »


  Done  :)
" Live and let Live "

Offline Billy B

  • Member
  • Posts: 374
Re: Cure Research Survey
« Reply #17 on: December 06, 2011, 01:45:19 PM »
Done.
VL 4420 CD4 340 CD4% 24   3/15/10 Started I&T
VL  UD   CD4 340 CD4% 26.5 05/13/10
VL  UD   CD4 360 CD4% 27.1 08/3/10
VL  UD   CD4 310 CD4% 28.4 11/22/10
VL  UD   CD4 420 CD4% 27.9 02/11/11
VL  UD   CD4 370 CD4% 26.4 06/08/11
VL  UD   CD4 360 CD4% 27.7 09/23/11
VL  UD   CD4 370 CD4% 28.3 01/20/12
VL  UD   CD4 430 CD4% 28.8 05/11/12
VL  UD   CD4 370 CD4% 28.1 09/07/12
VL  UD   CD4 390 CD4% 32.3 03/14/13

Offline Growler

  • Member
  • Posts: 567
Re: Cure Research Survey
« Reply #18 on: December 06, 2011, 01:47:33 PM »
Done

GROWLER
“If loving someone is putting them in a straitjacket and kicking them down a flight of stairs, then yes, I have loved a few people.”

Offline hope_for_a_cure

  • Member
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Re: Cure Research Survey
« Reply #19 on: December 06, 2011, 04:56:36 PM »
OkeyDokey Smokie!!  Done....

Offline WillyWump

  • Member
  • Posts: 7,162
  • your ramblings bore Yamaguchi Kitteh
Re: Cure Research Survey
« Reply #20 on: December 06, 2011, 06:27:52 PM »
completed
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline sam66

  • Member
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  • Keep The Faith ; Fight The Fight
Re: Cure Research Survey
« Reply #21 on: December 06, 2011, 08:51:19 PM »
Done
december 2007 diagnosed +ve ,

Offline surf18

  • Member
  • Posts: 525
Re: Cure Research Survey
« Reply #22 on: December 06, 2011, 09:04:40 PM »
DONE

Offline Cojo

  • Member
  • Posts: 196
Re: Cure Research Survey
« Reply #23 on: December 06, 2011, 09:51:16 PM »
done
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay

Offline bocker3

  • Member
  • Posts: 3,374
  • You gotta enjoy life......
Re: Cure Research Survey
« Reply #24 on: December 06, 2011, 10:13:23 PM »
Completed
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline buginme2

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  • Posts: 2,837
Re: Cure Research Survey
« Reply #25 on: December 06, 2011, 11:47:45 PM »
Good survey! Brings up some interesting topics such as "are you willing to stop your medication if its necessary in the clinical trial."  I had to think long and hard about this question.

Offline wolfter

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  • Posts: 4,460
Re: Cure Research Survey
« Reply #26 on: December 07, 2011, 08:46:50 AM »
Done, but question 11 posed a thought.  It didn't apply but I couldn't skip it.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Cure Research Survey
« Reply #27 on: December 07, 2011, 11:57:55 AM »
OK, completed the survey.

I'm probably too old for clinical trials, but it was interesting anyway.

HUGS,

Mark


I'm curious about this. 

In some ways, if one is picking among volunteers, shouldn't risks be borne first by those with less to lose?  Not that I'm heading off into the ice floes anytime soon, but I find that in some ways being older makes me less risk averse if the cause is good.

Assurbanipal (almost as old as his avatar)
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline zach

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  • not fade away
Re: Cure Research Survey
« Reply #28 on: December 07, 2011, 03:34:22 PM »
done

Offline John2038

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    • HIV Research News (Twitter)
Re: Cure Research Survey
« Reply #29 on: December 07, 2011, 04:10:37 PM »
Thx for ur activism
« Last Edit: December 08, 2011, 06:47:14 PM by John2038 »

Offline Inchlingblue

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  • Chad Ochocinco PETA Ad
Re: Cure Research Survey
« Reply #30 on: December 07, 2011, 08:03:07 PM »
I would participate in cure research if there were more of a health care safety net in the US.

My concern with participating in a study that could adversely affect my health is not having health insurance for treatment that may become necessary due to the adverse effects of the study.

I started taking the survey and realized my answers wouldn't be valid based on the above caveat.

Offline wolfter

  • Member
  • Posts: 4,460
Re: Cure Research Survey
« Reply #31 on: December 07, 2011, 08:45:27 PM »
I would participate in cure research if there were more of a health care safety net in the US.

My concern with participating in a study that could adversely affect my health is not having health insurance for treatment that may become necessary due to the adverse effects of the study.

I started taking the survey and realized my answers wouldn't be valid based on the above caveat.

When I participated in the AZT clinical trials, they were required to provide indemnity insurance to cover any harm that arises from participation.  I would imagine that is still the case.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Gio

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  • Posts: 92
Re: Cure Research Survey
« Reply #32 on: December 07, 2011, 09:00:42 PM »
done and it was very very thought provoking especially the risk that i am willing to take..  but i put it this way i took a risk with unprotected sex and here i am.  Everything in life is a risk it just depends how much you are willing to take..  just my thought

Offline Inchlingblue

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Re: Cure Research Survey
« Reply #33 on: December 10, 2011, 11:36:58 AM »
When I participated in the AZT clinical trials, they were required to provide indemnity insurance to cover any harm that arises from participation.  I would imagine that is still the case.

Wolfie

That's good to know. I wonder if that applies to all research studies.

Offline Since2005

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Re: Cure Research Survey
« Reply #34 on: December 11, 2011, 10:01:36 AM »
Done!

Offline Friday

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Re: Cure Research Survey
« Reply #35 on: December 21, 2011, 07:21:26 AM »
Tim,

thanks for bringing this up.

Just one general question: after reading David's blog entry for the survey I get the impression that the survey findings will specifically be used for the discussion with the FDA in regards to the design/risk/general rules of future HIV clinical trials.

Not sure which target group you had in mind when the survey was created - I have completed the survey even though I am neither a US citizen nor living in the US.
If indeed you are interested to recieve and include international resonses it might be a good idea to have that survey available in languages other than English.

If you need assistance with that I would be happy to help out for Dutch, German and French.


Offline Tim Horn

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Re: Cure Research Survey
« Reply #36 on: December 21, 2011, 07:46:29 AM »
Friday:

While the survey findings will be primarily used in discussions with the FDA, it's important to note that the FDA oversees studies both led by U.S. researchers who plan to enroll international volunteers and studies led by non-U.S. researchers hoping to enroll sites in this country. In turn, there was no reason to exclude responses for individuals not residing in the U.S.

As for the offer to translate the survey and its supporting documentation, I'll pass along the suggestion to David. However, I'm not sure if they want to get into this level of data collection.

Thanks much,

Tim

Offline poz91

  • Member
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Re: Cure Research Survey
« Reply #37 on: December 21, 2011, 12:04:48 PM »
"...the ethics of cure-related clinical studies that may likely require a great deal of altruism (many approaches being evaluated may not offer up an personal benefits to study volunteers, at least not initially) and may involve some degree of risk..."

I'd be exponentially more inclined to participate in a drug study for little or no compensation if I had some assurance that the drug would be affordable and readily available to those who need it.

But with HIV treatment being a billion dollar industry propelling many of these pharmaceutical companies to the top of the Fortune 500 list, #@!$ altruism... show me the money.

In the very least, study "volunteers" should be compensated with free meds for life.

Offline LM

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Re: Cure Research Survey
« Reply #38 on: December 21, 2011, 12:19:54 PM »
done.

Online Buckmark

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Re: Cure Research Survey
« Reply #39 on: December 21, 2011, 02:24:00 PM »
Done.  I've never participated in a clinical trial.  None of my doctors ever suggested this.  But I'd be willing to give it a try if it would help others.
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline pozniceguy

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  • Niceguy Dallas
Re: Cure Research Survey
« Reply #40 on: December 21, 2011, 06:49:49 PM »
done...   have  participated in 2  surveys   ...
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

 


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