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December 6, 2011

Activists launch new survey, ask people with HIV to take 10

minutes to help speed HIV cure research

Please forward to others who would like to participate

Find the survey here.

San Francisco, CA-A coalition of HIV advocacy groups are

calling on all people with HIV to take 10 minutes to complete a survey they hope

will help speed the pace of HIV cure research.

At issue are the kinds of risks that the U.S. Food and Drug

Administration (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, " said , director of research advocacy for Project

Inform in San Francisco.

" 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, " continued.

, in partnership with Vergel, director of the

Program for Wellness in Houston, and Jefferys from the Treatment Action

Group in New York City, devised 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 persons willingness.

The activists are hoping that the results of the survey may

lead to more openness toward community input on the part of the branch of the

FDA that will be responsible for reviewing many cure-oriented treatments, called

the Center for Biologics and Evaluation Research (CBER).

" Several researchers are designing studies right now that will

soon ask people to take some risks to learn more about new approaches to cure

HIV. It is important for the HIV community to let them and the FDA know what it

is willing to do to advance a cure of an illness that kills more than 2 million

people per year " , said Vergel.

Vergel and his colleagues are hoping that people with HIV and

their service providers will spread word widely about the survey. The larger the

number of people who take it, and the greater the diversity of the

survey-takers, the more legitimacy the survey results will have. The group

intends to make the results of the survey public before the launch of the 2012

International AIDS Conference that will take place in July in Washington, DC.

Survey.