POZ Exclusives : Questions Toward a Cure - by Tim Horn

POZ - Health, Life and HIV
Subscribe to:
POZ magazine
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join

Back to home » POZ Exclusives » December 2011

Most Popular Links
Most Popular Lessons

The HIV Life Cycle


Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV

20 Years Ago In POZ

More Web Exclusives

Click here for more news

Have news about HIV? Send press releases, news tips and other announcements to news@poz.com.


December 6, 2011

Questions Toward a Cure

by Tim Horn

A group of activists has launched a quick and easy survey aimed to help guide and speed along cure-related studies. Your input is important because these studies will ultimately require the participation and steadfast support of people living with HIV.

What expectations do you have, and risks are you willing to take, when faced with the option of participating in clinical trials of therapies that might help develop a cure? These are essential questions community advocates are looking to answer as they begin working with researchers and regulatory agencies like the U.S. Food and Drug Administration (FDA) on the development of ethical human studies.

An online survey, developed by Project Inform’s David Evans and the Program for Wellness’s Nelson Vergel with assistance from the Treatment Action Group’s Richard Jefferys, is seeking input from all people living with HIV. “The survey shouldn’t take any more than 10 minutes to complete, and we hope it will go a long way in helping us speed the pace of HIV cure research,” Evans says.

At issue are the kinds of risks that the FDA will allow in early phase clinical studies of promising treatments to either eradicate HIV from the body or to help the immune system better control the virus without the need for antiretroviral drugs.

“There are complex considerations in the FDA’s regulation of early studies that might carry certain health risks, especially if those studies are designed more to move the science forward than to achieve an immediate cure in the individual,” explains Evans, a former senior editor of AIDSmeds. “We believe that soliciting the opinions of people with HIV regarding the potential risks involved will help inform discussions regarding the design of these trials, and shed light on the extent to which individuals are willing to assume some risk—even if the study would only help people further down the road.”

Evans and his colleagues designed the survey to help measure the willingness of people with HIV to participate in research for more altruistic reasons, and to gauge the factors that are most strongly associated with a person’s willingness. The activists hope that the survey results will lead to frank, well-supported discussions with the FDA divisions that will ultimately be responsible for reviewing many cure-oriented HIV treatments.

The survey is timely, given that a number of research teams are designing studies that may require HIV-positive volunteers to take some risks and to understand that they may not necessarily benefit medically, on a personal level, from the approaches being tested.

To provide survey participants with some context and background information before they complete the online questionnaire, the activists have also drafted a detailed summary of research that is either currently under way or earmarked for development, along with descriptions of the potential risks and benefits involved. (Editor's note: We also recommend an AIDSmeds web exclusive, entitled "What Would You Do to Cure HIV?," authored by Evans and published in May 2011).

“The more people we can get to take the survey and the greater the diversity of our respondents, the more legitimate our results will be,” Evans notes. “If we’re to have frank discussions with researchers and FDA staff, we’re going to need data of our own when addressing community wishes and concerns. This is our chance to ensure that people living with HIV are fairly represented as we begin advocating for research that we’ve been waiting three decades for. Now more than ever, we need the voices of people living with HIV in research advocacy, and this survey is a great first step in this direction.”

In addition to using the survey results in their advocacy work, Evans and his colleagues intend to share their findings, likely in connection with the 2012 International AIDS Conference that will take place in July in Washington, DC.

Search: cure, eradication, survey, activism, advocacy, FDA, research, altruism, risks, benefits, Evans, Vergel, Jefferys, TAG, Project Inform, Wellness Restoration

Scroll down to comment on this story.


(will display; 2-50 characters)


(will NOT display)


(will display; optional)

Comment (500 characters left):

(Note: The POZ team reviews all comments before they are posted. Please do not include either ":" or "@" in your comment. The opinions expressed by people providing comments are theirs alone. They do not necessarily reflect the opinions of Smart + Strong, which is not responsible for the accuracy of any of the information supplied by people providing comments.)

Comments require captcha.
Please enter this number for verification:

| Posting Rules

Hide comments

Previous Comments:

  comments 1 - 5 (of 5 total)    

harleymc, , 2012-03-13 07:42:06
Self limiting survey. By requiring answers (where the options don't cover all experiences) to every question a lot of potential survey participants will never complete it. It seems foolish to exclude a mass of responses because of poor survey design.

ive grunewald, Jerusalem, 2012-01-23 13:08:34
helo i would appreciate a reply from Mr. Evans or Mr.Nelson Vergel. Why is this survey not being published ,announced and impelled in Israel ? Is the attitude variance, divergence,and, heterogeneity of data supplied by people across the usa matters ? Thank you. Ive

Starks, , 2011-12-13 15:59:23
Reading this report has giving me hope,and I will be willing to participate in a survey and a research that may cure me of HIV.

John Patrick Young, St. Louis, 2011-12-07 12:43:55
Diagnosed in 2005 with a co-diagnosis of encephalitis lead to one of the greatest challenges I am still facing today. I am always willing to give my opinion to an HIV survey.

James Wolfe, Buckeye Lake, 2011-12-06 08:23:20
I would certainly like to participate in the survey and have my opinions heard. 20+ years of living with this virus qualifies me to speak for many.

comments 1 - 5 (of 5 total)    

[Go to top]

Facebook Twitter Google+ MySpace YouTube Tumblr Flickr Instagram
Quick Links
Current Issue

HIV Testing
Safer Sex
Find a Date
Newly Diagnosed
HIV 101
Disclosing Your Status
Starting Treatment
Help Paying for Meds
Search for the Cure
POZ Stories
POZ Opinion
POZ Exclusives
Read the Blogs
Visit the Forums
Job Listings
Events Calendar
POZ on Twitter

Ask POZ Pharmacist

Talk to Us
Has a pet helped you deal with your HIV?


more surveys
Contact Us
We welcome your comments!
[ about Smart + Strong | about POZ | POZ advisory board | partner links | advertising policy | advertise/contact us | site map]
© 2016 Smart + Strong. All Rights Reserved. Terms of use and Your privacy.
Smart + Strong® is a registered trademark of CDM Publishing, LLC.