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Editor's Note: Back to the Drawing Board

September/October 2011

Jeff Berry

Jeff Berry. Photo: Chris Knight.

"Watershed moment." "Turning point." "A prevention revolution." These are just a few of the phrases that were used to describe the excitement over data generated from several important prevention studies presented at this year's 6th IAS Conference on Pathogenesis, Treatment and Prevention in Rome.

At the end of lead investigator Myron Cohen's presentation on the landmark HPTN 052 study, he received a long, standing ovation from the 3,000-plus crowd. During an interview with him immediately following his presentation, I asked what the enthusiastic response meant to him personally.

"Quite remarkable," he said. "Everybody has been saying, 'Yeah, treatment is prevention -- but what about 052? It isn't done yet.' This audience has been waiting for these results for a long time, and they appreciated the tenacity of all of the investigators and the support of the NIH."

"I didn't discover anything," said Cohen, "I proved an idea. I'm happy about that, but I don't hold myself out as Galileo."

HPTN 052 found a 96% reduction in HIV transmission among serodiscordant couples when the positive partner was on suppressive therapy. But treatment is not for everyone. It's an individual choice that each person must make on their own, once they are ready and fully informed about the ramifications of life-long treatment for HIV. And there are still issues like toxicity, side effects, drug interactions, stigma, and treatment adherence that all need to be factored into the equation, not to mention access. HIV advocate Sean Strub said it best recently: "I'm alive because of ART, but I'm also alive because of knowing when not to take it."


One of the statistics I heard in Rome which shouldn't have surprised me is that only 19% of HIV-positive people in the U.S. have a suppressed viral load -- 19%. That calls for some major treatment education. As International AIDS Society president Elly Katabira stated, it's the messaging that's going to be important, we'll need to put "relative risk" and "confidence interval" into simpler language in order to be understood.

In recent years, it has become more and more difficult to fund and maintain programs that are created and staffed by HIV-positive survivors to educate their peers. These programs are being replaced with a trend towards more traditional core medical services, and outcomes that can be easily measured and quantified.

The irony is that it is only because of those rapidly disappearing treatment education programs that many of us are still alive. I can't tell you how important it was to me when I first tested positive to find Test Positive Aware Network (which publishes Positively Aware), to which I turned for information and support. To discover that there were so many others like me who were HIV-positive, to learn from them about what they were doing to cope and to survive -- it was extremely empowering to me.

There is no way that we can expect to scale-up treatment without the education that is so vital to its very success. As programs continue to get slashed, doors closed, and positions eliminated, disaster awaits us all if we don't start now to insist on increased funding for treatment education.

Recently I was invited to Washington, D.C. to take part in the Department of Health and Human Services' Consultation with People Living with HIV/AIDS on the National HIV/AIDS Strategy (NHAS). The two-day meeting brought together federal partners and individuals from around the country to discuss the NHAS implementation. During the meeting, I brought up the importance of treatment education, and how we need to continue to make it a high priority as we move forward with the president's strategy. While no one in the room seemed to disagree with my point, we all need to be reminded that the NHAS doesn't have any new funding attached to it. It's up to us to continue to stress the importance of treatment education with our federal partners, legislators, and policy makers as funding priorities are set and shifted over the next few months and years.

This issue of Positively Aware is all about education. Whether you have been living with HIV for years, are newly diagnosed, or are caring for someone with HIV, this issue will touch on some of the basics that we all need to know. From an immune system overview and legal issues for people with HIV, to opportunistic infections and all those lab tests, there is something for everyone who wants to learn more and become empowered.

Of course, treatment education is not the answer to everything. But it is the solid foundation that we all need in order to build a better and more fulfilling life with HIV. Even Galileo had to start somewhere.

Take care of yourself, and each other.

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This article was provided by Positively Aware. It is a part of the publication Positively Aware. Visit Positively Aware's website to find out more about the publication.
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