POZ December 2012 by Smart + Strong

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THE

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100 Standing ACCELERATING Strong Against THE END OF AIDS Hate and HIV

David Kuria of the Gay and Lesbian Coalition of Kenya fights homophobic hate crimes in Africa.

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Ken Harvin participated in Housing Works’ fundraising bike ride from Boston to New York.

34 LOVE IS THE CURE In an excerpt from his latest book, Sir Elton John describes an unexpected meeting with a U.S. president and outlines what governments around the world can—and should—do to help end the epidemic. 38 THE POZ 100 From scientists and researchers making groundbreaking discoveries to the advocates and politicians on the front lines of the epidemic, this year’s list recognizes people who have made a signiﬁcant contribution to speeding up the end of AIDS. Through their efforts, the cure might be closer than you think. 8 FROM THE EDITOR

24 VOICES

12 FEEDBACK

26 CARE AND TREATMENT

More Than a Feeling

Your letters and comments

14 POZ Q+A

Researcher and clinician Steven G. Deeks, MD, explains important aspects of cure science and gives us reasons for hope.

21 POZ PLANET

GMHC’s annual Latex Ball makes prevention fashionable • Google bombing the Russian Ministry of Health • are over-the-counter HIV tests helpful or harmful? • a new film about buyers’ clubs • a roundup of sex ed in schools • Paris Hilton’s latest controversy • an iPad game that teaches prevention

POZ bloggers on the importance of support Low doses of aspirin may reduce heart attack risk • a single application for pharma assistance programs • Stribild is approved • why monitoring free testosterone levels is key • a potential new way to protect brain function

28 RESEARCH NOTES

The latest info on prevention, treatment, cure research and more

33 SURVEY SAYS

Using digital technology for your health

48 POZ HEROES

Ken Harvin cycles for awareness.

POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for a 8-issue subscription) by Smart + Strong, 462 Seventh Ave., 19th Floor, New York, NY 10018-7424. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 184. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2012 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® is a registered trademark of CDM Publishing, LLC.

FROM THE EDITOR ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF

JENNIFER MORTON MANAGING EDITOR

More Than a Feeling

8 POZ DECEMBER 2012 poz.com

EXECUTIVE EDITOR

KATE FERGUSON SENIOR EDITOR

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ART PRODUCTION MANAGER

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CONTRIBUTING WRITERS

TOMIKA ANDERSON, SHAWN DECKER, AUNDARAY GUESS, MARK LEYDORF, TIM MURPHY, RACHEL RABKIN PECHMAN, RITA RUBIN, BENJAMIN RYAN CONTRIBUTING ARTISTS

sent the countless people worldwide working on a cure and biomedical prevention, as well as the advocacy to make them accessible and to overcome HIV stigma and discrimination. Also in the POZ 100 this year is Steven G. Deeks, MD, cochair of the International AIDS Society Working Group on HIV Cure. Read his overview of cure research on page 14. Last but not least, I want to acknowledge that Regan Hofmann, our former editor-inchief, has started an exciting new chapter in her life as a global health consultant. Go to blogs.poz.com/regan to read more about her next steps. All of us at POZ wish her the best. As you flip through this issue, I encourage you to notice the additional changes to our lineup and look. Let us know what you think. I’m looking forward to the challenge and privilege of being at the helm of POZ at such a hopeful time in the HIV/AIDS pandemic. I’m especially excited about the opportunity to tell your stories. Happy holidays!

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(FLASK) ISTOCKPHOTO.COM/ARTIST/ILLUSTRATOR; (GUTIERREZ) STEVE MORRISON

TESTED HIV POSITIVE IN 1992. My commanding officer in the Marine Corps read my diagnosis to me from a script. It was the day after my 22nd birthday. The shame and guilt I carried for more than a decade later were only equaled by the rejection, stigma and discrimination that I (and many of you) experienced too often. I feared that I wouldn’t live to see my 30th birthday. I’m grateful that the universe had other plans for me. As an openly HIV-positive gay Latino, I know how difficult it can be to come out and to live your life with dignity and hope. After 20 years of living with HIV, I’m proud to say, as our cover guy Sir Elton John so famously sang, “I’m still standing!” We excerpt a chapter from John’s latest book, Love Is the Cure, on page 34. The memoir details his life in the fight against HIV. The founder of the Elton John AIDS Foundation explains why we need allies, not enemies. As we mark another World AIDS Day, it will undoubtedly take teamwork to end the pandemic. Above all else, however, it will take a cure and effective prevention, as well as the resources to implement them. We spent a lot of time this year at POZ telling you about the cure, explaining why now more than ever we’re closer to it than you might think. It felt fitting that we close out the year by showing you how close. We believe the cure is—to borrow a phrase from the rock group Boston—”more than a feeling” (a new take on that tune, for sure). The 2012 POZ 100 list on page 38 honors people helping to speed up the end of the pandemic. No list is ever complete, but these researchers, clinicians, advocates, politicians and celebrities—including Sir Elton—repre-

TIM HORN

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activism. Longtime AIDS journalist and ﬁrst-time ﬁlmmaker David France used archival footage to show the impact of the AIDS Coalition to Unleash Power (ACT UP) and the Treatment Action Group (TAG). Readers responded to Staley:

OVERCOMING TRAUMA

The article “Healing the Hurt” (September 2012) examined the link between HIV and violence against women. The women proﬁled in the story are proof that helping HIV-positive women deal with and recover from trauma can improve their lives and their health. Thanks so much for this important article about an issue that has been silently festering for so many years. How can a woman improve her health, when her life is so ﬁlled with emotional pain? This was a major theme at the 2012 International AIDS Conference. This is the year for American women to take a strong united stand for action and services during the 16 Days campaign to end violence against women [November 25 to December 10].

the foundation of a sociopolitical, socioeconomic and a newly framed gender schema. The message and self-determination of these abused women must rise to the ears of hegemony who haven’t lived their experience. LUIS MARCUS MORALES III, SAN ANTONIO

All of our stories show that these are things that can be overcome, but we need to start early. Fighting abuse is one way to ensure an AIDS-free generation of women and girls. KAT G

Peter Staley in How to Survive a Plague

LOREN JONES, BERKELEY

Because HIV/AIDS is an ever-evolving disease, spanning across all cultures in the United States, I wish to extend a loud round of applause to the women in this article who have the courage to [tell their story]. Clearly their voices are not those of victims; they are

12 POZ DECEMBER 2012 poz.com

THE POWER OF FILM Peter Staley’s blog entry, “How to Survive a Plague Opens Friday!” (September 19, 2012), promoted the theatrical release of the documentary about the history of AIDS treatment

JILL CADMAN

The perseverance [of the activists] left me speechless. I cried and cried, but I was so proud to be gay as I watched this documentary. I also felt guilty that I didn’t do more when I came out in the early ’90s and was terriﬁed of getting HIV. I volunteered for prevention and behavioral studies and ultimately became positive in 2005. Peter and all those in ACT UP and TAG, you are my heroes. SCOTT, NEW YORK

I saw this brilliant movie last Friday. I was diagnosed [more than] 23 years ago and can’t imagine making the decision to get tested and surviving without ACT UP. Peter, you are a freakin’ movie star, and I can’t possibly thank you enough for your courage and inspiration. Everyone—see this ﬁlm! LEE RAINES

I saw the ﬁlm as part of the Dayton, Ohio, lesbian and gay ﬁlm festival. I was truly moved by it. It brought back some powerful memories of the outrageous tactics of the brave ACT UP people and how necessary those tactics were—and often still are! This should be required viewing for all who think we can’t change the system. It can be done. ACT UP proved it! RICHARD

TAXICAB CONFESSIONS

The article “Paris Hilton Says Most Gay Guys ‘Probably Have AIDS’” (September 20, 2012) covered the controversy on the hotel heiress’s private remarks to a friend that were recorded by a taxi driver. She later apologized. (See page 23 for more details.) Based on Paris Hilton’s past behavior, I would have to say that her apology is disingenuous. If she were truly sorry, she would not have made these comments to begin with. DANIEL

It’s obvious Paris needs an education. I believe she meant what she said because she thought no one was listening. [Since] it was taped, she had to apologize to get the egg off her face. LINDA, BERKELEY

Why is anyone shocked or angered by yet another display of Paris Hilton’s ignorance? It was a private conversation. We all say things that are cruel or not PC when we are with those we assume are “friends.” And with all the Internet hookup sites, the message sadly is that some gay men are sex obsessed. DALE SMITH

People still care what Paris has to say? Really? YVONNE2012

CORRECTION

In “Hip-Hop Soul” (October/ November 2012), the correct spelling of Kathleen Adams’s organization is Momma’s Hip Hop Kitchen.

(CHUNG) JEFF SINGER; (STALEY) COURTESY OF PETER STALEY; (HILTON) ISTOCKPHOTO.COM/GYI NSEA

Cecilia Chung in the September 2012 issue of POZ

I saw the film with my mother and friends. We all found the film incredibly powerful. I worked at GMHC and an HIV research/doctor’s office in the ’90s. I knew some of the story of ACT UP and TAG, but not all of it. I am glad it has been documented so lovingly. What you did was amazing and saved so many lives. Thank you.

Paris Hilton

THE POZ Q+A

BY ORIOL R. GUTIERREZ JR.

TOWARDS AN HIV CURE

TEVEN G. DEEKS, MD, IS A PROFESSOR OF MEDICINE IN RESIDENCE at the University of California at San Francisco (UCSF). For nearly two decades at UCSF, he has both studied HIV and treated people living with the virus. In his most current role as cochair of the International AIDS Society (IAS) Scientific Working Group on HIV Cure, Deeks and 36 other scientists and clinicians authored a report titled “Towards an HIV Cure.” Here, he shares his insights on cure research. Tell us about the IAS working group and the report.

The objectives were to have a diverse international group of scientists outline the obstacles to a cure and to develop a road map of how we as scientists might address those obstacles. We hope that through this strategy we will engage the community, inspire people to work in this area and use this document to raise interest and perhaps funding. The group identified several key priorities. We need to know where the virus resides in people who are on long-term therapy—what types of tissues, what types of cells. These are things we have surprisingly little information about. We also need to know where the molecular pathways are that get turned on within a cell that force a virus to go into hiding and stay there. This gets down to some of the details about how HIV DNA—and in fact how DNA in general—is regulated. We need to figure out what role the immune system has as a mechanism for those systems. Does chronic inflammation contribute to why HIV persists indefinitely? We need to understand why certain people who acquire HIV appear on the surface to have been cured of HIV, the so-called elite controllers. We need to understand the mechanisms that account for that.

14 POZ DECEMBER 2012 poz.com

We need to come up with ways to measure the virus. Very few cells contain true replication competent virus, and measuring these cells will become a big issue in terms of doing clinical trials. And finally we need to identify agents that sort of interrupt the various mechanisms of persistence, and [then we need] to move them into the clinical trial setting. At this point, the group has no specific future tasks, but the work that the group is hoping to inspire is only just getting started. What is your role in the Martin Delaney Collaboratory?

Recognizing that the cure was going to be a major part of the future HIV research agenda, the [National Institutes of Health, the NIH,] a few years ago funded three collaboratories [under the umbrella name the Martin Delaney Collaboratory, named in honor of the late AIDS activist]. These are three large groups of researchers, each with a different focus. CARE, the Collaboratory of AIDS Re-

SHUTTERSTOCK/RAJ CREATIONZS

Researcher and clinician Steven G. Deeks, MD, explains the cure science and gives us reasons for hope.

searchers for Eradication, works on the molecular biology of HIV latency. Defeat HIV, the Delaney Cell and Genome Engineering Initiative, works on developing gene therapy approaches. And then there’s DARE, the Delaney AIDS Research Enterprise, which I codirect with my colleagues. Our focus is on harnessing the immune system to prevent persistence or to clear the virus. Please explain your disulfiram research.

The primary barrier to a cure is the fact that the genetic information for HIV gets integrated into long-lived CD4 cells, so they basically exist for years and years and become silent. To cure people, we need drugs that activate this resting HIV, forcing it out of its hiding place. This in theory should result in the death of the infected cell. A few years ago, Bob Siliciano found that disulfiram—[better known as Antabuse, which is used to treat alcohol dependency]—reverses HIV latency in cell culture. Through mechanisms yet to be defined, the drug appears to activate HIV from resting cells. The level of drug exposure necessary to cause this effect is similar to that obtained when the drug is given to people with alcohol problems. Since this drug has actually been around for almost 60 years and is clearly safe, at least in people who don’t drink, we designed a series of clinical trials to advance this idea into patients. We first performed a pilot study to confirm its safety. We found in that study that the drug might increase HIV production. With funding from amfAR and now the NIH, we are about to launch a more definitive study to see if this drug actually might contribute to a cure.

COURTESY OF STEVEN DEEKS

Why are you studying elite controllers?

There are two types of cure: a functional cure in which the patient’s immune system controls the virus and a sterilizing cure in which all virus is removed from the body. We think the former is possible because about one in 100 people who have HIV essentially appear to have a functional cure. These so-called elite controllers have undetectable viral loads in the absence of therapy and gen-

erally remain undetectable for years to decades without therapy. Based on work done by our group and others, [we now know that] about 50 percent of these individuals are controlling because they have powerful HIV-specific T-cells. Based on this finding, there’s been some interest in trying to develop vaccines that generate such T-cells. Our group has been interested in two completely different questions. First, what is the mechanism of control in the other 50 percent, those people who don’t have evidence of strong, HIV-specific Tcells? Knowledge gained in these studies might lead to novel interventions aimed at curing people. Second, are elite controllers truly protected from getting any HIV-related

ease. We’re trying to figure out why that is and what to do about it. What still drives you?

I truly enjoy my job. There is a picture of me at work with the comment, “Thank God it’s Monday.” I have the fortune every day of working with a wonderful group of talented and highly committed people. I also interact in the clinic and in the research clinic with a group of highly engaged patients. HIV care and HIV science are very dynamic. There are always interesting questions to address. My job is basically the same as it’s been since I started this work in 1993. I was hired as a part-time clinician and to help out in various clinical research projects, most of which were “translational”

“ There are two types

Steven Deeks

of cure: a functional cure and a sterilizing cure. We think the former is possible.”

disease? Along these lines we’ve found that many elite controllers indeed have chronic inflammation, perhaps early heart disease and maybe even some subtle immunological abnormalities. Based in large part on that last series of observations, our group is now looking at whether or not treating elite controllers with therapy might be beneficial. The study of inflammation has been the driving force for our group since 1996. We became interested in inflammation as an explanation for why some people with drug-resistant HIV do well in therapy. This work led to our interest in studying inflammation in elite controllers, and more recently to determine if chronic inflammation contributes to early heart disease and/or HIV persistence during long-term therapy. Chronic inflammation is central to much of what happens in untreated and treated dis-

in nature and involved the link between the laboratory and the clinic. The only thing that has changed since I arrived in 1993 is that my clinic time has been reduced slightly and our research program has grown. The questions often change, but they have remained very much grounded in our clinic and in our local community. We are now working on what will likely be the most challenging question: Can HIV be cured? Timothy Brown (a.k.a. the “Berlin Patient”) has moved to San Francisco and joined our research cohort. His presence has inspired our team and collaborators to work on issues related to the cure. He is in many ways the public figure of what we have been doing for years, which is working closely with the HIV community in performing cutting-edge and, we hope, highly relevant research. ■

poz.com DECEMBER 2012 POZ 15

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BY TRENTON STRAUBE

A VERY BIG KIKI

Strike a Pose at GMHC’s House of Latex Vogueing is still in fashion—and so is HIV prevention. Both shared the runway at the Gay Men’s Health Crisis (GMHC) annual House of Latex Ball, in which “houses” competed in 26 dance and fashion categories at Roseland Ballroom in Manhattan. (The 1990 documentary Paris Is Burning captures

(HOUSE OF LATEX BALL) COURTESY OF KEVIN TACHMAN/BACKSTAGEAT.COM; (IAS) COURTESY OF IAS/RYAN RAYBURN

Caption goes here in this space.

the ball and house scene; that same year, Madonna’s “Vogue” struck its pose.) GMHC, a New York City AIDS service group, started House of Latex in 1989 as an HIV prevention program. More than 2,000 people attended the latest Latex Ball, pictured below, raising nearly $28,000. In a word: Legendary.

RUSSIANS DEPLOY “GOOGLE BOMBS”

When the Russian Ministry of Health failed to procure HIV meds for its citizens, Alexandra Volgina “Google bombed” the ministry. As NPR reported, Volgina, an HIV-positive mother and a member of Patients in Control, launched the digital offensive in which advocates went online and linked the phrase “Ministry of Health” with photos showing empty stocks of meds; that way, when anyone Googled the phrase “Ministry of Health,” those images came up. (Famous U.S. Google bombs include Dan Savage linking “Santorum”—as in the antigay presidential hopeful—to a certain aspect of anal sex.) Volgina’s tactic got the ministry’s attention and improved the drug supply. Such innovative actions also helped earn Patients in Control a Red Ribbon Award for advocacy and human rights at July’s XIX International AIDS Conference (AIDS 2012), where she gave a talk, “How to Use Social Media When Censorship Gets in Your Way: Experiences From Russia’s ‘Funeral Bureau.’” Bombs away!

Hot Dates / December 1: World AIDS Day

Volgina, right, gets a Red Ribbon.

poz.com DECEMBER 2012 POZ 21

POZ PLANET

BY TRENTON STRAUBE

HOME ALONE

Over-the-counter HIV tests: helpful or harmful? The first at-home rapid HIV test kit became available over the counter in October. Is this a treat, or a trick? Depends on whom you ask. The U.S. Food and Drug Administration approved the OraQuick test in hopes of reaching people who wouldn’t get tested in other situations. It costs about $40 and gives results in 20 to 40 minutes after you swab the inside of your mouth (no blood is involved). OraSure, makers of the test, has set up a bilingual, 24/7 support center to direct referrals and answer questions. The home tests don’t always detect HIV during the first three months of infection—the so-called “window period”—and there will be false positives (one out of every 5,000 tests of people who are actually negative) and false negatives (about one out of every 12 tests of people who are in fact positive). This is called 99.98 percent specificity and 92 percent sensitivity, respectively. What happens if people use the tests to screen their hookups? To find out, Columbia University researcher Alex Carballo-Dieguez, PhD, gave home HIV tests to 32 “high, high Caption goes risk” men who had unprotected anal sex here in this with multiple men. Of their nearly 140 sexual space. partners in New York City, 72 percent agreed

22 POZ DECEMBER 2012 poz.com

to the tests and 10 tested positive; there were seven verbally aggressive reactions but no physical violence. The men liked having the testing option and said it helped them curb their risk-taking. (For further details, search “Carballo-Dieguez” on POZ.com.) POZ online readers expressed their own thoughts on the subject. An edited sampling: This absolutely gives a false sense of security and is the wrong direction. —Chris, Tampa Do we care about people once they’ve tested positive, or is any cost OK so the bareback party crowd can decrease their risk? —Horrified

Matthew McConaughey has morphed from studly stripper to scary skinny to play real-life Texan Ron Woodroof, the rebellious figure who started The Dallas Buyer’s Club (also the film’s title) and who died of AIDS in 1992. While this dramatic weight loss may garner much publicity, the movie is sure to bring attention to a little-known aspect of the epidemic: buyers’ clubs. Before the advent of modern antiretrovirals in 1996, so-called buyers’ clubs sprung up as a way to provide HIV-positive people with experimental treatments not approved by the FDA. Woodroof, a homophobic electrician who contracted the virus through drug use, smuggled illegal meds from as far away as Japan then distributed them along an underground network. According to The Hollywood Reporter, Gael Garcia Bernal costars as a club member and filming was slated to start this fall. Will Oscar be far behind?

People have a right to know the positive status of their sexual partners. —Jeton, Harlem, NY This test will create more prejudice toward us. People should know that condoms work for them, not against them. —Mike Testing and treatment of HIV should be left up to the professionals. —Keith, Portland This provides people the choice to get tested in the most comfortable surroundings they can make. —SoulAsylum, Minneapolis

Matthew McConaughey

(HOUSE) ISTOCKPHOTO.COM/STEPAN POPOV; (MCCONAUGHEY) ISTOCKPHOTO.COM/JASON MERRITT

WHAT’S A BUYERS’ CLUB? MATTHEW KNOWS.

“Gay guys are the horniest people in the world. They’re disgusting. Dude, most of them probably have AIDS.” SAY WHAT? The charming quote above arrived via Paris Hilton in September. But

context is key. A cab driver recorded the hotel heiress’s private conversation with a gay friend who had just described hookup app Grindr and how an HIV-positive gay dude used it to have unprotected sex. Hilton soon issued an apology, telling the Gay & Lesbian Alliance Against Defamation:

“HIV/AIDS can hurt anyone, gay and straight, men and women. It’s something I take very seriously. Gay people are the strongest and most inspiring people I know.”

Back to School Californians Sue for Better Sex Ed

(HILTON) ISTOCKPHOTO.COM/MICHAEL CAULFIELD; (PAPER PLANES) ISTOCKPHOTO.COM/KIMIKODATE

The Golden State requires public schools to teach about HIV/AIDS, and it prohibits abstinence-only education. But Clovis Unified School District is playing hooky; a lawsuit from the American Academy of Pediatrics, the Gay-Straight Alliance Network and students’ parents alleges the school textbooks still promote abstinence and fail to mention condoms. That’s bad because, as the complaint spells out: “Clovis adolescents live in…a region with limited access to reproductive health care and…with high rates of teen pregnancy.”

Abstinence-Only Linked to HIV Rates

Researchers in New Orleans linked abstinence-only sex ed to high HIV rates among Louisiana youth—specifically low-income African Americans. Youth ages 13 to 24 make up nearly 25 percent of new infections in the state, the only age group to see an uptick from 2009 to 2010. Lawmakers need to get schooled. They voted down a measure to teach comprehensive sex ed.

Oral Sex Less Common Among Youth

iPad Video Game to Teach HIV Prevention Skills What’s new in Elm City?

The games people play might lower their HIV risks. That’s what researchers hope as they develop an iPad video game for at-risk youth of color. “Our game aims to change behavior in teens before they begin having sex,” says Kimberly Hieftje, PhD, who works with Yale’s Play2Prevent initiative to develop “serious games.” Based on interviews with kids in New Haven, Connecticut, the interactive, educational game— titled PlayForward: Elm City Stories—allows youths to create avatars that face real-life decisions. Once players find out the results of their actions, they can go back in time to make better choices. This way, in reality they won’t need a do-over.

Nearly two-thirds of 15- to 24-year-olds have had heterosexual intercourse, according to a CDC survey, but only 26 percent of girls and 24 percent of boys engaged in oral sex first. This challenges the idea that most young people have oral sex before vaginal sex. What’s more, fewer teens have intercourse today (43 percent in 2010 versus 51 percent in 1988) and more use condoms. Sound good? Not so fast: In 2010, half of sexually transmitted infections occurred among 15- to 24-year-olds. Clearly, comprehensive sex ed is in order. And let’s include same-sex activity in these surveys; our LGBT students count too!

Hershey School Settles HIV Suit

After Milton Hershey School in Pennsylvania allegedly denied an HIV-positive teenager admittance because of fears he might have sex with other students, the boy fought back in court. The school apologized this summer, changed its policy and invited the student to attend, but he didn’t drop the case. Good thing: In September, a $715,000 settlement was reached. Sweet.

Caption goes here in this space.

poz.com DECEMBER 2012 POZ 23

VOICES

THE BE BEST ST OF THE PO POZ Z BLOG B BLOGS LOGS LOG S

Tried and True WHAT FRIENDS ARE FOR

An acquaintance whom I had always been attracted to began to show interest in me.... He made me laugh; we talked on the phone as if we had been close friends for years; and when we spent time together he showered me with affection…. After I broke the news to him [that I have HIV], he held me, shared some secrets of his own, and expressed kindness and empathy with both his words and his touch. He told me he wasn’t sure if he was prepared for all that came with my status, but said he wanted to be there for me and hinted that he may just need some time to get used to the idea…. He did slowly distance himself from me, revealing his conflicted emotions, and it became increasingly evident that he was not able to think of me in the same way he used to, now that I had disclosed my status. Throughout all of this, I was lucky to have the incredible support of a few trusted friends and a new peer support group, which I started attending earlier this year. I can’t say enough how crucial finding a support group has been. Connecting face-to-face with peers who are dealing with similar issues, and who could truly empathize with my struggles and fears, helps to lift some

24 POZ DECEMBER 2012 poz.com

of the heavy weight off my shoulders (and heart) this disease often brings. —Anonymous blogs.poz.com/anonymous

since I was crying like one. I was no longer in this battle alone. —Aundaray Guess blogs.poz.com/aundarayguess

YOU ARE NOT ALONE

GAY OK

My best friend Tracy opened the door, and although I tried to put on a happy face she could always read me.... We sat on the edge of her bed and she put her arms around my shoulder. Up until that time I felt like I was all alone in the world, but that simple contact between me and her opened up the floodgates of everything I was hiding. It was so powerful because up until then I didn’t allow anyone to touch me or hug me as I felt dirty. Even if it was the shaking of hands, I didn’t want human contact. It had been two years since I was told I was HIV positive, and I never told anyone, not even myself. I was scared. I was scared no one would love me. I was scared of the rejection, and I was scared of the secret I carried. And although Tracy and I had been good friends for many years, I was scared of what she would think; she was a rock to me in this crazy world. With no melodrama I just told her I had HIV, and the tears fell like a monsoon. The hug she gave me didn’t get weaker but stronger. She held me like I was a baby, which is no surprise

My beloved hometown of Charlottesville, Virginia, hosted its first-ever Pride festival.… I couldn’t resist being a part of this event to show my support for a community that has shown me so much support since I decided to speak out about being HIV positive…. Undoubtedly the result…will make this an annual event, one I look forward to attending every year. Why? Because my life today wouldn’t be possible without my “gay allies” (a.k.a. friends). When I was just a confused, 20-year-old straight kid in Waynesboro, Virginia, with a website, it was a group of gay men at POZ magazine that opened my handwritten letter and invited me to New York City. It really was a portion of the gay community that gave me confidence in knowing that, as a positoid, I was a catch as a single man. And when I wrote My Pet Virus, once again it was the gay community that pulled the strings to get that book published. I am forever indebted, and forever grateful. —Shawn Decker blogs.poz.com/shawn

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The support of family and friends is indispensable for all of us, but it’s especially so for people with HIV/AIDS, who often deal with rejection, stigma and discrimination. The following excerpts from POZ bloggers Anonymous, Aundaray Guess and Shawn Decker give testimony to the importance the support of others has in our lives.

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CARE AND TREATMENT

BY TIM HORN

Low doses of aspirin may inhibit clots.

ONE A DAY TO KEEP HEART ATTACKS AWAY?

Aspirin. It’s inexpensive, widely available and may reduce the risk of heart attacks and strokes among people living with HIV, but it’s not being used by many of those who might benefit, according to two new studies. Many heart attacks and strokes begin when a cholesterol plaque causes the wall of an artery to tear, which results in platelets rushing to the area to clot the blood. If too many platelets accumulate, the tiny cells can block the blood vessel and cut off oxygen needed to keep the heart or brain working properly. According to a recent New York University study, people on HIV meds have platelets that are even more likely to clump together, compared with HIV-negative folks. This may partly explain the higher rate of heart attacks among HIV-positive people. Low doses of aspirin, the study suggested, may inhibit these clots. It also minimized markers of immune activation and inflammation, which can weaken blood vessels and increase the risk of tears. So should those living with HIV start taking daily low-dose aspirin? Upon noting that a scant 17 percent of patients with cardio risks at a University of Alabama at Birmingham HIV clinic were being recommended to do so, study lead researcher Greer Burkholder, MD, and his colleagues said health care providers need more prompting to follow general guidelines for recommending aspirin, such as those published by the U.S. Preventive Services Task Force in 2009. But more research is necessary. For example, he says, it’s unclear if some people living with HIV may face a higher risk of a potential serious side effect of daily aspirin therapy—hemorrhaging in the gut. “The decision over whether or not to take aspirin for primary prevention [of heart attacks or strokes] is something each individual should discuss with a health care provider in order to weigh the potential risks and benefits.”

26 POZ DECEMBER 2012 poz.com

For uninsured HIV-positive people with low incomes, applying for free or discounted HIV meds just got a little bit easier. Seven major HIV drug-producing pharmaceutical companies have agreed to accept a single application for their individual assistance programs, ultimately doing away with the cumbersome and time-consuming multiple forms of years past. The Common Patient Assistance Program Application was announced by Health and Human Services Secretary Kathleen Sebelius at July’s International AIDS Conference and went into effect in September. “The last thing someone living with HIV wants to think about is filling out another form,” she said. “This application streamlines and simplifies the process, reduces barriers to medication access, and speeds access to lifesaving drugs.” The form is available at: http://hab.hrsa.gov/ patientassistance.

Senator Bernie Sanders (I-Vt.)

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One Form to Rule Them All

New Booster STRIBILD in Town: Cobicistat

Check your “free” testosterone.

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IS HERE

Who comes up with these names, anyway? Formerly known as the Quad, the single-tablet regimen Stribild (pronounced STRY-build) was approved in late August and landed on pharmacy shelves soon thereafter. Stribild contains three drugs active against HIV: the new integrase inhibitor elvitegravir and the tried-and-true backbone nukes tenofovir and emtricitabine. The tablet also contains cobicistat, a novel pharmacokinetic (PK) enhancer needed to boost blood levels of elvitegravir. U.S. HIV treatment guidelines rank Stribild as an “alternative” option for first-time treatment takers. “This is a one-pill, once daily treatment option that has fewer central nervous system and rash side effects, compared with Atripla,” says Paul Sax, MD, of Brigham and Women’s Hospital in Boston, though he adds that nausea is still an issue and Stribild is probably best avoided by those with kidney disease. “Responses were every bit as good as Atripla in one study and as Norvir-boosted Reyataz plus Truvada in another.” Some docs, however, question where Stribild fits in the HIV treatment toolbox. “What’s better about [Stribild] compared to what we have?” asks Howard Grossman, MD, a private physician with AlphaBetterCare in New York. “It doesn’t have superior action, I’m not aware of any resistance advantage, and it’s far more expensive.” As pricey as it may be—it costs 35 percent more than Atripla—the good news is that assistance is available: Reduced pricing for ADAP has already been solidified, and both co-pay and patient assistance programs are available from Gilead, Stribild’s manufacturer.

T-TOTALLER

If you’re an HIV-positive guy on the lookout for low testosterone—and you should be; hypogonadism, or low T, is common in men with the virus and can cause problems like fatigue, depression and bone loss—make sure you and your doc are checking for both “total” and “free” levels of the hormone in blood samples that are collected first thing in the morning. “Using total testosterone to diagnose hypogonadism will result in missing about 30 percent of the cases,” says Anne Monroe, MD, MPH, an author of a recent study at Johns Hopkins University. She says that free testosterone, which is the proportion of total testosterone not bound to a protein (SHBG) that can prevent the hormone from working as it should, is the test to keep an eye on. “Any man who has symptoms of hypogonadism with a low free T”—even if the total T level is within the normal range—“should be considered for testosterone therapy,” she says, adding that “older and obese men are at higher risk for low testosterone. Increasing physical activity to lose weight is a great way to increase testosterone without hormone replacement.”

Nature’s Little Helpers A group of plant chemicals is being eyed by Johns Hopkins University (JHU) researchers for its ability to protect brain function in people living with HIV. Best of all? The chemicals of interest are abundant in three delectable digestibles: green tea, dark chocolate and red wine. Though the JHU paper published earlier this summer raises many more questions than answers, the science is intriguing. Plant polyphenols known as catechins—notably epicatechin and EGCG—can induce the production of a protein called brain-derived neurotrophic factor (BDNF). It turns out that people living with HIV tend to have lower-than-average levels of BDNF, potentially explaining our higher rates of neurocognitive impairment. Whether catechin-based therapies, or regular consumption of the real deals, can prevent or improve HIV-related brain disease isn’t firmly established as of yet. But it may turn out that warding off neurological problems never tasted so good.

poz.com DECEMBER 2012 POZ 27

BY TIM HORN

PREVENTION

TREATMENT

CURE

CONCERNS

Is Selzentry (maraviroc) the next best pre-exposure prophylaxis, or PrEP, for HIV-negative individuals looking to avoid contracting the virus? A clinical trial dubbed NEXT-PrEP, which was announced in July, is looking to find out. Selzentry could be a useful alternative to Truvada, the only approved PrEP option, as it targets CD4 cells, not the virus. This potentially means less drug resistance—a concern for Truvada PrEP users who may need the drug, and others like it, if they later become infected. Curiously, just one week after the clinical trial was announced, CDC scientists reported that maraviroc failed to protect monkeys from rectal infection with the virus. The results might not bode well for humans—only studies will tell—though NEXT-PrEP researchers say Selzentry doesn’t work as well on monkey cells as it does on human cells.

Dolutegravir, the once-daily integrase inhibitor that doesn’t require boosting, continues to leave a trail of encouraging news on its path to approval. Combined with the dual-nuke tablet Epzicom (abacavir and lamivudine)—and a pill containing all three drugs is in development—dolutegravir made a rare achievement in an ongoing Phase III clinical trial: an efficacy advantage over that of a tried-and-true standard, Atripla, in first-time treatment takers. Reported at a September conference, preliminary data from the 830-person SINGLE study found that 88 percent of those using dolutegravir and Epzicom had undetectable viral loads, compared with 81 percent using Atripla— a difference that was statistically significant, meaning it was too great to have occurred by chance. Also encouraging: Dolutegravir is active against strains of HIV resistant to Isentress (raltegravir) and elvitegravir, suggesting that it may also be useful for people who no longer respond to them.

A group of HIV-positive French individuals—14 at last count—may be yet another piece of the cure puzzle. Comprising the VISCONTI cohort, they were all started on HIV treatment within 10 weeks of becoming infected, remained on therapy for an average of three years, and have subsequently stayed off treatment for roughly six years, all the while maintaining undetectable viral loads. They’re not “elite controllers”—they don’t have the same immunologic characteristics as those able to naturally control the infection—and their prolonged time off treatment makes them unique among other early treaters. Have these individuals been “functionally cured,” whereby HIV is still present but effectively controlled without the need for meds? Nobody has declared them as such. But they’re a model for this approach as scientists continue to tease out what separates these individuals from the rest.

HIV-positive people who experience a heart attack and require hospitalization are more likely to die, compared with those not living with the virus, say the sobering results of a U.S. data analysis. The review included 1.5 million hospital admissions related to heart attacks recorded between 1997 and 2006 by a nationwide survey. After adjusting the data for differences between individuals with and without HIV, the risk of death was roughly 38 percent higher among those living with the virus. Though the reasons for this disparity aren’t yet clear, the study authors noted that HIV-positive patients were less likely to receive standard cardio care while hospitalized, such as anticoagulants, angiography or bypass surgery. More research is necessary, but in the meantime, the researchers warn that health care providers need to recognize the increased risk of death among people Senator living with HIV and act Bernie accordingly. Sanders

Selzentry Is PrEP Contender

28 POZ DECEMBER 2012 poz.com

Dolutegravir Shows Promise

Curious Cohort on Early Treatment

Fewer Comebacks From Heart Attacks

(I-Vt.)

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RESEARCH NOTES

ISSUES

Treatment

DECEMBER 2012

Redeﬁning EAPs for Patients With MDR-HIV By Nelson Vergel and Dan Tietz

Introduction We have repeatedly heard the following statements about multi-drug resistant HIV (MDR-HIV) patients in a host of meetings on treatment access and HIV research: “These patients no longer exist – they’re either dead or have responded to the latest ARVs”; “Only patients who do not adhere to their HIV regimens have MDR-HIV”; and “Our clinic cannot provide expanded access programs (EAPs) due to cost and staff restraints.” However, after surveying physicians around the country, we have found that although these patients are in a minority, they do exist and are anxiously waiting for access to viable regimens that could save their lives. No one can deny that many patients can now suppress their HIV with effective regimens that cause fewer side effects. However, a vulnerable and often forgotten minority of people are still struggling with MDR-HIV while they anxiously await for access to life-saving regimens that would ﬁnally control their virus replication. Although some of these patients may have developed resistant HIV due to lack of adherence or other issues, many of them have been strictly following their doctor’s orders for years. They’re often veterans of drug development research who have accumulated HIV resistance as they repeatedly joined antiretroviral (ARV) studies or traditional EAPs of a single new drug out of desperation to control their HIV viral load. As they signed up for studies that helped companies get their drugs approved by the FDA, many of these patients were exposed to suboptimal HIV regimens (namely, functional monotherapy or the addition of a single new active ARV to a failing HIV regimen). It is time to create a new paradigm to break the vicious cycle of single drug access that has failed these patients. A complicating factor for these patients’ fate is the fact that the current HIV investigational drug pipeline has very few ARVs in similar phases of development to enable multiple drug access to help them. Continuing with traditional EAPs that provide access to a single investigational ARV will only ensure the demise of these patients by repeating past mistakes of functional monotherapy.

Although most clinicians would agree that MDR-HIV patients are a minority, there is no way to quantify this vulnerable population since no patient registry exists for them. Due to several factors to be reviewed in this article, it is imperative that a new type of smaller expanded access program of multiple concurrent investigational ARVs is created to help patients that could fall through the cracks due to geographical and/or clinic cost and staff limitations. Fortunately, some physicians treating patients that have run out of treatment options have started campaigning along with activists to have pharmaceutical companies collaborate in providing early access to multiple investigational ARVs. This article will describe a new approach to addressing the urgent treatment needs of this easily forgotten minority in the era of successful ARV treatment.

It is time to create a new paradigm to break the vicious cycle of single drug access that has failed these patients.

Background The management of drug resistant HIV has improved dramatically in recent years with the approval of a number of highly effective ARVs, including raltegravir, maraviroc, darunavir, and etravirine. Among this recent generation of FDA approved HIV drugs, perhaps the most promising is raltegravir, the first inhibitor of HIV integrase to become available. When used in combination with other active drugs, raltegravir has proven to be very potent, well-tolerated, and highly effective. In phase II and phase III clinical trials, the vast majority of patients who were able to combine raltegravir with at least one other active drug achieved durable viral suppression. Despite the impressive efficacy of these drugs in clinical trials, a subset of patients has exhibited virologic failure. Most failures likely occurred because of the inability to construct a regimen that contained two to three fully effective agents. Adverse events, drug-drug interactions and non-adherence also likely contributed to the inability of these drugs to result in durable viral suppression. As a consequence of these factors, the failure rates in recent phase III studies such as DUET (etravirine+darunavir), MOTIVATE (maraviroc), and BENCHMRK (raltegravir) were in the 27-40 % range. The picture gets even less encouraging when

looking at longer term data. Patients using raltegravir for 144 weeks show failure rates of 40-56%, even in those patients with one or more active agents in their background therapy. This is reflected by their HIV’s genotypic sensitivity score (GSS), a score reflective of how many active ARVs they have left to fight their HIV. A GSS of zero means no ready options for suppressing HIV replication. It is assumed that many of the patients who failed these recent studies were subsequently unable to construct a suppressive regimen, although the long-term outcome of those failing these clinical trials is unknown. Most dropped out of these studies in search of something that may save their lives. And others have died in that search. The prevalence of multi-regimen failure in clinical practice is unknown. Dr. Steven Deeks and his colleagues at the University of California, San Francisco, in partnership with San Francisco General Hospital, have an ongoing observational cohort of patients who have developed drug resistant HIV (known as the SCOPE cohort). Most of these patients have been able to construct a fully suppressive regimen and are currently doing well. But of the original 300 patients, approximately 40 now have evidence of having failed all six therapeutic drug classes currently available. These 40 patients have a GSS of zero, and have no ready options for suppressing HIV replication. Many have advanced disease (CD4 < 100) and, hence, may not be able to wait for the development and approval of multiple new options. Some clinicians refer to them as patients in “deep salvage.” There is no registry in the U. S. that includes patients with HIV who have developed resistance to all commercially available ARVs. In an effort to gather data about this vulnerable population, an informal online survey was prepared with the help of a team of investigators and activists that was presented in a meeting with the Food and Drug Administration (FDA) and clinicians, sponsored by the Forum for Collaborative HIV Research in November 2009. It is important to note that this survey was done two years after raltegravir’s approval, so results reflect patients who had already been exposed to that drug. The survey obtained replies from 83 physicians around the U.S. Two thirds of them reported having at least one patient with MDR-HIV, with a total of 252 patients with a GSS of zero or one (zero or one active commercial ARV left in their HIV treatment options). Possibly the most surprising finding is the wide geographical distribution of the patients, with physicians from 47 cities. Although the largest cities had the most patients, many lived in small towns that are far from research sites or large medical practices that maybe better equipped to handle EAPs.

as possible. The goal is to make HIV drugs under review and not yet FDA approved available to patients who have exhausted all currently approved therapies. Early in the HIV epidemic, HIV activist organizations challenged the existing drug approval process as too cautious, particularly in the face of a deadly epidemic that was claiming thousands of lives for lack of effective therapies. Their efforts shifted the balance from the strictly protective model, with an emphasis on preventing harm to patients, toward increasing access to potentially effective therapies for patients who are in need. The emergence of the HIV epidemic and the advocacy of HIV activists increased public awareness of the consequences of delaying drug approval. HIV activists argued that they were willing to accept the risks associated with early access in exchange for the potential life-saving beneﬁts the drugs could provide. The FDA responded to the demands of HIV patients and clinicians by streamlining the approval process for drugs for serious and lifethreatening conditions, and by codifying mechanisms for providing access to drug therapies prior to FDA approval. As a result, in the late 1980s and early 1990s, thousands of patients accessed the nucleoside agents that were progressing through clinical development. For example, the EAPs for zidovudine (AZT) and didanosine (DDI) occurred via the treatment investigational new drug (IND) pathway, which allows access to drugs that have demonstrated some level of efficacy and safety. The clinical experience in these large trials provided useful clinical information that was subsequently published in the literature. The FDA also responded to the demand for ARVs by revising and updating the approval process. Beginning in 1987, the review of HIV medications received the highest priority at all stages of the approval process. The agency also developed an expedited review process for HIV medications, which has improved to the point that the FDA now frequently approves HIV medications for use in the U.S. before virtually any other country. There are a number of mechanisms through which patients may obtain access to unapproved therapies. Clinical trials constitute the most common way that patients receive drugs before they are approved. Given the controlled nature of clinical trials, which are designed to look at very speciﬁc efficacy and safety outcomes of one new drug at a time, enrollment qualifications are generally highly selective. This limits enrollment only to those patients who meet strict entry criteria. In addition to clinical trials, there are a number of expanded access mechanisms by which drug companies can make unapproved drugs available to patients in need, but most have not included two investigational medications from different manufacturers taken at the same time. The FDA also allows for a physician to apply to a pharmaceutical company for access of a research drug for a patient in dire need (Single Patient Treatment IND). However, most physicians

The emergence of the HIV epidemic and the advocacy of HIV activists increased public awareness of the consequences of delaying drug approval.

Expanded Access Programs Expanded access programs (EAP’s) were developed in order to make promising treatments available to patients who need them as early in the drug evaluation process

GMHC

DECEMBER 2012

are not familiar with this process or may not have the necessary staff to handle its requirements. And in most cases, access to more than one drug is needed, which means applying to a concurrent EAP or clinical study for access to the second active ARV. Furthermore, the FDA does not require that pharmaceutical companies agree to provide access to a patient in need. It is important to note that drug safety and dosing (phase II clinical trials) data are needed before providing any potential access. Finally, the company can deny the physician’s request without any penalties or actions from the FDA or activists. The number of patients enrolled in EAPs in the U.S. has slowly declined as more therapies in different treatment classes became available and more people were able to control viral replication with increasingly effective and newer treatments. EAPs usually start after full enrollment of the drug’s phase III studies is completed, with an average of 6 to 18 months prior to the approval of the drug. Due to activist pressure, pharmaceutical companies have allowed access to other companies’ research drugs in some recent EAPs (daruunavir-Prezista, raltegravir-Isentress and maraviroc-Selzentry) to enable patients to construct a viable HIV regimen. For instance, Merck allowed the use of Prezista, a protease inhibitor then available via EAP, in their phase III studies of Isentress. This meant that a physician had to apply for an EAP and a phase III study to provide access for patients in need, an approach that is time and resource consuming. Unfortunately, most EAP documentation and related nurse/physician staff time are not reimbursable or covered by study resources. Physicians who have traditionally provided EAP access did so out of generosity and a commitment to help the considerable number of salvage patients in the past. But as salvage patient numbers decreased, it became difficult for many teaching hospitals and clinics to justify the additional staff time to complete the EAP documentation, particularly given many clinics’ ﬁnancial, administrative and other limitations. Given that patients who are unable to construct a viable regimen often fail therapy, the FDA and others have advocated that future clinical trials only enroll patients able to construct background treatment regimens with a GSS greater or equal to one. In other words, the patient is rejected from a clinical trial for a new drug unless the patient’s HIV is still susceptible to at least one other drug currently on the market. Although this is an ethically sound recommendation, an unfortunate consequence is that those who have now progressed to multi-drug resistant deep salvage are no longer able to access experimental drugs via clinical trials. Making matters worse, the HIV drug pipeline has fewer new agents with new modes of action in development due to the relatively competitive U.S. market, high drug development costs, and the difficulty of ﬁnding treatment experienced patients with one or more active ARVs with which

to combine an investigational drug. As a result, pharmaceutical companies have abandoned further development of some promising new treatments that could help people with MDR-HIV. Luckily, the FDA has proposed a new trial design that may facilitate the development of medications for treatment experienced patients, which may encourage pharmaceutical companies to continue HIV drug development. However, even this new proposal does not address the needs of deep salvage patients with a GSS of zero. For the moment, however, it will remain virtually impossible to construct an effective treatment regimen (at least two active agents plus background therapy) for those who have MDR-HIV. In the meantime, many patients with low CD4 cell counts are not likely to survive. Only collaboration among pharmaceutical companies can shift the current access paradigm by providing an innovative early EAP which makes available a combination of at least two new investigational agents that have progressed beyond phase II trials (for which safety and dosing data are known).

A Proposed Solution A multi-drug expanded access program (MDEAP) has been proposed by a coalition of leading medical providers and advocacy organizations. Leading investigators championing this effort include Dr. Steven Deeks and Dr. Jay Lalezari from San Francisco and Dr. Jerry Ernst from ACRIA in New York. Two pharmaceutical companies with new ARVs in development also support this initiative, at least in principle. One of the companies is ViiV Healthcare, makers of the new integrase inhibitor dolutegravir that has completed phase III studies and which seems to be active against many raltegravir-resistant HIV. The other is TaiMed Biologics, the maker of ibalizumab, an entry inhibitor (monoclonal antibody), which has gone through two phase II studies. Dosing and safety data are available for both drugs. Used together, these drugs may help to suppress MDR-HIV, as long as they are combined with another active ARV to which the patient’s HIV has not developed resistance. This proposal consists of a pilot phase in New York and San Francisco with 40 patients, then an expansion phase to the rest of the country. It is also proposed that a centralized Institutional Review Board (IRB) be used nationally to provide access to patients in small cities from clinics that do not have access to IRB’s. A non-proﬁt clinical organization could handle the administrative burden of documenting potential significant adverse events and managing report forms for physicians around the country, especially for those who lack the resources to do so. Since the deep salvage population is relatively small and spread out geographically, a centralized administrative organization would facilitate access that otherwise would not be available to these patients due to limitations in their clinics.

Only collaboration among pharmaceutical companies can shift the current access paradigm by providing an innovative early EAP.

GMHC.ORG

EDITOR: ROBERT VALADÉZ ASSISTANT EDITOR: ELIZABETH LOVINGER ART DIRECTOR: ADAM FREDERICKS GMHC Treatment Issues is published by GMHC, Inc. All rights reserved. Noncommercial reproduction is encouraged. GMHC Treatment Issues 446 West 33 Street, New York, NY 10001 gmhc.org © 2012 Gay Men’s Health Crisis, Inc.

may be decreasing as more people are able to sustain viral suppression with newer and more tolerable ARVs, there is still a need to ﬁnd effective ARV combinations for those who have not fared as well due to accumulated resistance. Smaller and innovative EAPs that include several investigational agents will not only potentially save lives by preventing functional monotherapy, but also gather safety data on new ARV combinations before they are widely used in the ﬁeld. We can only hope that pharmaceutical companies cooperate to make this a reality with the support of the community, the FDA, and clinicians around the country.

Help for Patients Who Are Running Out of Time ViiV Healthcare recently initiated an expanded access program for dolutegravir, an integrase inhibitor, which completed phase III studies in patients with raltegravir resistance. For the reasons described above, however, patients with a GSS of zero cannot construct an effective treatment regimen with this drug alone even if accessing it through ViiV’s new EAP. Dolutegravir may be FDA approved in the coming months. TaiMed’s ibalizumab recently ended phase II studies. It is a genetically-engineered monoclonal antibody that could be administered intravenously once every two weeks and the company is also developing an injectable, subcutaneous formulation of this drug. Because ibalizumab has a completely new mode of action, most patients could be expected to respond to it when used with at least one other active agent. It is different from the CCR5 receptor entry inhibitor maraviroc (Selzentry) in that it blocks the CD4 receptor on T-cells rather than blocking a co-receptor. This means it could be effective against a virus that uses either the CCR5 or CRX4 co-receptor. Unfortunately, due to its small size and limited funding, TaiMed cannot proceed with phase III studies to get ibalizumab approved until a development partner is found. Neither TaiMed nor ViiV expect any negative interactions if dolutegravir and ibalizumab were to be combined. While ViiV and TaiMed have expressed interest in helping patients in deep salvage and will provide their unapproved drugs free of charge for patients with declining health and at high risk of death, TaiMed’s need for a new development partner means that ibalizumab cannot presently be provided as part of a MDEAP. As a result, the project is on hold and patients in great need continue to wait. Luckily, ViiV is also developing a non-nucleoside reverse transcriptase inhibitor (NNRTI) that shows promising activity against NNRTI-resistant virus. In addition, Bristol-Myers Squibb (BMS) is developing a new entry inhibitor that holds promise for people who have MDRHIV. Although BMS has not been a part of discussions regarding this MDEAP, it is our hope that the company will consider joining the conversation as the new drug’s safety and dosing data become available.

Conclusion HIV treatment has made great strides in the past few years. But multidrug resistance is here to stay until a cure is found. Although the number of patients with MDR-HIV

How to apply for Emergency Treatment IND (Single Patient) access of a single investigational drug. While it may seem intimidating at ﬁrst to a primary care provider, the process for a single patient emergency IND is rather straightforward. The patient must have evidence of resistance to all commercially available ARVs and a viral load that suggests that their HIV disease is not responding to a current drug regimen. The usual laboratory tests include a phenotypic resistance test and an HIV tropism assay. It is important to also know if phenotypic resistance to T-20 (Fuzeon) is present. Additionally, genotypic integrase mutations need to be characterized to assess the patient’s potential response to dolutegravir. If the patient’s health is at risk, i.e. a CD4 cell count under 100 cells/ml and a declining clinical outlook, and the patient’s HIV has developed resistance to all commercially available or expanded access ARVs, then the treating provider should: Contact the pharmaceutical companies with the investigational ARVs to obtain free drugs in advance of FDA approval for the commercial market. Upon each manufacturer’s agreement, the provider should follow the procedure described in this FDA link (http://1.usa.gov/ODDgPk ), to complete the required forms and obtain institutional review board (IRB) approval. Admittedly, this single-patient IND procedure is seldom used by physicians due either to a lack of information or concerns about its complexity. While it may be a bit time consuming the first time, it is not particularly complex. And the FDA will permit its use for small groups of similarly situated patients. Moreover, many local IRBs will expedite approval in urgent circumstances and the FDA will orally approve a single patient IND if the patient has an expected survival of less than 30 days (called an emergency IND). Indeed, the drug company will ship the drug in an expedited manner while the provider completes the forms. For a sample consent form and cover letter for IRB submission go to www.salvagetherapies.org. For more information on the content provided by the authors, please contact NelsonVergel@yahoo.com. Nelson Vergel has lived with MDR-HIV for many years and knows ﬁrst-hand the issues surrounding salvage therapy. He created www.salvagetherapies.org to help people like him who have run out of HIV treatment options. Daniel Tietz is the Executive Director of the AIDS Community Research Initiative of America (ACRIA).

GMHC

DECEMBER 2012

THE POZ SURVEY SAYS

BY JENNIFER MORTON

Healthy Technology

Mobile and digital information technology can help health care providers and patients in many ways. In addition to making the health care system more efямБcient, it can help doctors diagnose health problems sooner, reduce medical errors and provide care at lower costs. Our June 2012 survey asked readers to weigh in on how they use health-related technology and how comfortable they are with the idea of sharing their medical information electronically.

68 % 86

WOULD USE A WEBSITE TO STORE AND UPDATE THEIR HEALTH INFORMATION

26% 74% YES

HAVE YOU USED A HEALTH-RELATED MOBILE PHONE APPLICATION?

WOULD USE A WEBSITE TO CHECK FOR DRUG INTERACTIONS

92%

OF READERS HAVE INTERNET ACCESS

% 91 OF READERS OWN A MOBILE PHONE

% 49 OF READERS OWN A SMARTPHONE

YES

77% (PILL BOTTLE) ISTOCKPHOTO.COM/DNY59; (IPHONE) ISTOCKPHOTO.COM/BAHADIRTANRIOVER

NO NO

41%

YES

59% NO

HAVE YOU EVER FILLED OR RENEWED A PRESCRIPTION ONLINE?

Source: June 2012 POZ Survey

HAVE YOU REQUESTED AN ELECTRONIC COPY OF YOUR PERSONAL MEDICAL RECORDS?

87 % 46

HAVE SEARCHED ONLINE FOR INFORMATION ABOUT HIV/AIDS

HAVE SEARCHED ONLINE FOR INFORMATION ABOUT AN HIV/AIDS DOCTOR

NOT CONCERNED

32% 60%

SOMEWHAT CONCERNED

VERY CONCERNED

YES

HOW CONCERNED ARE YOU ABOUT THE PRIVACY OF YOUR PERSONAL MEDICAL RECORDS?

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LOVE IS THE WHEN IT COMES TO THE FIGHT AGAINST HIV, THE FOUNDER OF THE ELTON JOHN AIDS FOUNDATION BELIEVES WE NEED ALLIES, NOT ENEMIES. 34 POZ DECEMBER 2012 poz.com

GETTY IMAGES/KEVIN MAZUR

CURE

IR ELTON JOHN ADMITS IN HIS latest book, Love Is the Cure, that he could have done more to fight AIDS in the beginning of the epidemic. While he did what he could to help friends and loved ones as they succumbed to the disease, at the time, the legendary musician, songwriter and performer was battling his own demons. For years, John struggled with drugs and alcohol. It was the AIDSrelated death of his young friend Ryan White in 1990 that inspired John not only to get sober but also to fully engage in the battle against HIV/AIDS. The Elton John AIDS Foundation (EJAF) was created in 1992. Its mission is to address the importance of eliminating stigma and discrimination and allowing HIV-positive people to live with dignity. Early on, John recognized the need for EJAF to fund the programs and services that no one else would touch, such as needle exchange programs or outreach to sex workers. To date, EJAF has raised more than $275 million in support of worthy projects around the world. This July, John gave the keynote address at the XIX International AIDS Conference in Washington, DC. The message of his speech was the same as the message in his book: Love is what’s needed to truly end the AIDS epidemic. We now have the tools to stop HIV in its tracks, but without compassion and understanding for those living with the virus, we will never defeat it. In the following excerpt from his book, John describes an unexpected meeting with a U.S. president and outlines what governments around the world can—and should— do to help end the epidemic.

medallion. After a few kind words, Colin Powell, the secretary of state, hung the medallion around my neck. When I got back to my seat, David and I chuckled to ourselves, because as it turns out the medallion itself is several metal bars with a big, rainbow-colored ribbon that looks identical to the Gay Pride flag. And I was very proud to wear it, of course. The next day, we went to the White House for the formal citation reading ceremony. As we walked up those grand steps, it wasn’t excitement we felt but apprehension. We were entering the lion’s den, we thought. David and I had no idea how we would be treated or what the experience would be like for a same-sex couple visiting a Republican White House that seemed openly hostile to gays. But we were immediately put at ease by an Air Force pilot who was assigned to be our White House escort. You’ve never seen a more handsome man in your life, especially in that uniform! And what’s more, I instantly knew he was gay. These were the days when you weren’t supposed to “ask” and they weren’t supposed to “tell.” But, of course, I couldn’t help myself. “You’re gay, aren’t you?” I said. He smiled and nodded. To this day, our Air Force escort is a great friend of ours. The award presentation was in one of the beautifully ornate receiving rooms at the White House. President Bush read citations for each honoree. When it came to my turn, the president began to list some of my hit songs over the years, including “Crocodile Rock,” “Daniel” and—in one of the president’s legendary verbal miscues—“Bernie and the Jets.” Just then, First Lady Laura Bush interrupted the president and yelled out, “It’s Bennie and the Jets!” The president and everyone in the audience had quite a laugh. That is, except Dick Cheney. When President Bush finished reading my citation and the audience applauded, David

was very surprised and flattered to be selected to receive the prestigious Kennedy Center Honors [in 2004], which are given to only a few entertainers each year in recognition of their cultural contributions to American life. It is a big deal—I knew that much. But to be quite honest, at the time [my partner] David and I were quite torn about whether I should accept the honor. The award itself is presented by the sitting president of United States, and I was no great fan of George W. Bush, apart from his position on AIDS. More than that, I was morally opposed to many of his policies, and I took personal offense to many of his pronouncements. Ultimately, however, David and I came to realize that the Kennedy Center Honors were bestowed not by a president but by a nation, and my love and respect for America were much more important than any political statement I could make by refusing to accept an award from George W. Bush. Caption David and I flew to Washington, and the first order of in busigoes this space. Capness was a formal dinner at the U.S. State Department, during tion goes in which each Kennedy Center honoree is presented thiswith space. a

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You see, at that point, France had not yet made a significant commitment to fighting the global AIDS epidemic, and President Bush was truly angry about it. The French government has since spearheaded the creation of a wonderful multigovernment program called UNITAID, which funds the purchase of HIV/ AIDS medications and other global health needs for poor countries through a small tax on the purchase of airline tickets. But back in 2004, President Bush was lobbying for them to do more. This wasn’t a political issue to him, or some side project. He genuinely cared about people around the world who were dying of AIDS. I’ll never forget our meeting that night. President Bush and I haven’t seen each other or talked since, and like many people, I deeply regret much of what he did in office, especially the wars he waged in Iraq and Afghanistan. But my encounter with George W. Bush reminded me not to rush to judgment about people, especially when it comes to fighting AIDS. More than anything, we need allies in this fight, not enemies. hat was one important lesson learned from the implementation of PEPFAR. The other was one I grew to understand, not just from watching PEPFAR’s creation but from my own experience testifying before Congress, and from years of EJAF’s work around the world: There is no institution on earth, not one, that is as capable of making sweeping changes as government. Governments have the power to entirely remake the societies they govern. They have the power to battle, to wage war, not just on other nations but on poverty, on injustice, on epidemics.

(KENNEDY CENTER HONORS) GETTY IMAGES/EVON AGOSTIN; (ALL OTHERS) COURTESY OF THE ELTON JOHN AIDS FOUNDATION

and I were stunned to see the VP sitting there with his arms folded and a scowl on his face. It may have been that he still had bad feelings about my quote to a British publication a few weeks prior, that “Bush and this administration are the worst thing that has ever happened to America.” I suppose I can’t blame him for being unhappy with me about that! That evening, it was a wonderful gala concert at the Kennedy Center Opera House—a very moving event during which my friends Billy Joel and Kid Rock serenaded me with my own songs. David and I sat in the special box with my fellow awardees: Warren Beatty, Ossie Davis and Ruby Dee, Joan Sutherland, and John Williams. At intermission, our group filed into the hospitality area behind the box. Our seats were next to the president’s, and little did I realize that our boxes shared this hospitality room in common. Suddenly I was standing next to a bunch you wouldn’t think of as my usual concertgoers: Donald Rumsfeld, Dick Cheney, Condoleezza Rice, Colin Powell and, yes, President Bush. It was a surprising moment indeed, but the real surprise would come when the president and I had a chance to speak. I remember having the greatest conversation with him. He was warm, charming and very complimentary, not only about my music but also about the work of my foundation. He knew all about what we were doing, and he was endlessly knowledgeable about HIV/AIDS as well. President Bush and I discussed the epidemic for quite a while, and he asked if there was anything he could do to help EJAF. I thanked him for his offer, but I said that his commitment to PEPFAR [the U.S. President’s Emergency Plan for AIDS Relief] had already done a world of good, and I commended him for all he was doing to fight AIDS abroad. At that point, I felt compelled to ask if there was anything I could do to help him. “Yeah,” he said, with a look of dead seriousness on his face. “Tell the French they need to give more money.”

“IT DOESN’T MATTER WHO YOU ARE OR WHERE YOU COME FROM, YOU DESERVE THE DIGNITY OF HAVING YOUR LIFE VALUED AS MUCH AS THE REST OF US.” They have the resources and influence to change the future, and the choice of whether or not to do so. And with a disease such as AIDS in particular, they have a unique ability to fund treatment and care, education and prevention. They can ensure that all their citizens have access to lifesaving medicine. Governments are, without question, the From left: Elton single biggest factor in determining John and Ryan White in 1986; whether AIDS will be a death sentence for at the Kennedy their people, or whether their HIV-positive Center Honors in 2004; with citizens will survive. Freddie Mercury Governments of the world are more at the Live Aid concert in 1985; than just resources for funding. They also with David Furnish, EJAF-UK have an unmatched abilit y, w ithout executive director spending a penny, to fight the terrible Anne Aslett, torment of stigma. Government, after Desmond Tutu and former EJAF-UK all, has the ultimate megaphone. All it executive director Robert Key in takes is a president or prime minister to 2005; with a child say, “It doesn’t matter who you are or at a motherbaby clinic in where you come from, you deserve the Cape Town, South Africa dignit y of having your life valued as

much as the rest of us.” All it takes is for lawmakers to speak up for their marginalized constituents. All it takes is leaders to proclaim that they will not let a disease ravage people living in their communities. In an age of ubiquitous communications, these statements alone can have a tremendous impact. It is all too easy for political leaders to think about AIDS only in the abstract. It is all too easy for them to forget that there are real people counting on them for help, people who deserve the same chance to live a long life as anyone else. In the end, the only way we will end AIDS is with a commitment to do so not just from one government but from all governments. A commitment from governors and presidents. From premiers and prime ministers. From Asia to Africa to Europe. Governments can be the greatest force in the fight to rid the world of AIDS. But only if they so choose. This is an excerpt from Love Is the Cure by Elton John. Copyright © 2012 by Elton John. Reprinted by permission of Little, Brown and Company, New York, NY. All rights reserved.

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DREAMSTIME.COM/SGAME

INCE THE BEGINNING of the AIDS pandemic, hopes for a cure have been raised and dashed, leading many to wonder if it could ever become a reality. But things have changed—radically. For starters, one person has already been cured of HIV. His name is Timothy Brown, a.k.a. “the Berlin Patient,” and scientists confirmed in 2010 that he has indeed been cured. Although his situation is unique and complex (see our glossary on cure terminology on page 45), he may no longer be the only person cured of the virus. In July during the XIX International AIDS Conference (AIDS 2012) in Washington, DC, scientists hinted at an additional two possible cases, though it’s too early to know for sure. Also at AIDS 2012, researchers revealed data on 14 people with HIV who were treated with antiretroviral therapy early in their infection and have now achieved “viral controller” status— they appear able to control the virus without remaining on meds. Findings like this may provide a path to what’s called a “functional” cure, when the virus still lives inside the body, but it does little or no harm; this compares with a “sterilizing” cure, when the virus is eradicated from the body. Researchers are exploring paths to both types of cures, along with an array of vaccines, biomedical preventions and other solutions. As the science rapidly evolves, so does our understanding of what the end of AIDS would look like and how we would go about erasing the virus off the planet. Never before has that goal seemed more attainable. As Secretary of State Hillary Clinton declared last year and President Barack Obama has reaffirmed, we can achieve an AIDS-free generation. The question for world leaders is no longer can we, but will we.

o honor that goal, the 2012 POZ 100 recognizes people who have made a significant contribution to speeding up the end of AIDS. We round up the Seekers and Hunters, those scientists who make the groundbreaking discoveries that inch us closer to a cure. We also include the Defenders, those researchers who explore ways to prevent others from getting HIV (think: vaccines and pre-exposure prophylaxis). And we salute the Soldiers, those advocates, politicians and celebrities on the front lines in the fight to end AIDS. No list is ever complete, but the people compiled here are representative of the multitudes seeking to stop the pandemic. They have hope for a future without HIV, and so do we.

The International AIDS Society (IAS) Scientific Working Group on HIV Cure is a group of scientists and clinicians who have launched a new road map to ending AIDS. Their report “Towards an HIV Cure” outlines and prioritizes areas of research to reach that goal. Steven Deeks, who cochairs the working group along with IAS president Françoise BarréSinoussi, says the report’s larger goal is “to engage the community, inspire people to work in this area and use this document to raise interest and perhaps funding.” Below are the 37 members of the group. Brigitte Autran and Christine Katlama Autran is a professor at the Pitié-Salpêtrière Hospital of the Pierre and Marie Curie University (UPMC) in Paris, France. Katlama is head of its AIDS Clinical Research Unit. Their ERAMUNE-1 clinical trial is investigating if HIV can be eradicated with increased antiretroviral treatment and the IL-7 vaccine. (See “Hunter” Robert Murphy for info on the sister trial ERAMUNE-2.) Françoise Barré-Sinoussi The virologist won a Nobel Prize in 2008 for her role in the 1983 discovery of HIV, but instead of slowing down she’s doubling down on the fight. This year she became IAS president, and she cochairs (with Steven Deeks) its Scientific Working Group on HIV Cure. Monsef Benkirane A researcher at the Institute of Human Genetics at the National Center of Scientific Research in France, he’s been involved in the study of a protein called SAMHD1, which helps protect the molecular material in some cells that HIV needs to reproduce. Such knowledge may slow or stop the ability of HIV to spread. Ben Berkhout A professor of human retrovirology at the University of Amsterdam, the Netherlands, Berkhout has been experimenting with gene-silencing therapy—technically known as RNA interference (RNAi)—to make RNAi-producing genes that can shut down HIV replication and to deliver them to immune cells. J. Scott Cairns A former program officer for the Division of AIDS at the National Institute of Allergy and Infectious Diseases, Cairns consulted with IAS, offering pivotal help to the first three gatherings of its Scientific Working Group on HIV Cure and their agenda-driving reports. Nicolas Chomont How can we activate HIV hiding in reservoirs? As an assistant member and a principal investigator at the Vaccine & Gene Therapy Institute of Florida, Chomont and his lab are exploring a variety of approaches to reactivate HIV production in long-lived cells. Tae-Wook Chun A scientist at the National Institute of Allergy and Infectious Diseases, Chun and his colleagues were among the first to find HIV reservoirs, those long-lived, HIV-infected CD4 cells impervious to ARVs. That was in 1997; since then, he’s been heavily involved in researching ways to eradicate them.

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Melissa Churchill As associate professor and head of the HIV Neuropathogenesis Laboratory at the Burnet Institute in Melbourne, Churchill is studying how HIV enters the central nervous system and infects cells there, with the hope of figuring out how to remove the virus safely and effectively—and how to keep it out. Steven Deeks Using disulfiram (better known as Antabuse, used to treat alcohol dependency) against HIV reservoirs is one of the many areas of research for the professor of medicine in residence at the University of California at San Francisco. (Read the POZ Q&A with Deeks on page 14.) Michele Di Mascio He’s the chief of the AIDS Imaging Research Section at the National Institute of Allergy and Infectious Diseases. To help accelerate cure research, his group is utilizing technology that allows researchers to actually see where HIV’s counterpart SIV hides in primates. Alain Lafeuillade This HIV researcher is chief of the Infectious Diseases Department at General Hospital in Toulon, France, and an adjunct professor at the Institute of Human Virology at the University of Maryland School of Medicine. He’s also a coeditor of the journal HIV Clinical Trials. Alan Landay The professor and chair of the Department of Immunology/ Microbiology at Rush University Medical Center in Chicago helped establish its HIV research program about 30 years ago. As cochair of the Office of AIDS Research Panel on Pathogenesis at the National Institutes of Health, he is currently focusing on immune-based HIV therapy. Michael Lederman A professor of medicine and codirector of the Center for AIDS Research at Case Western Reserve University in Cleveland, he researches immune deficiency and ways to enhance immune function in people with HIV. Sharon Lewin She’s one of the first researchers to state boldly and clearly that a cure for HIV is possible. Her Melbourne-based Monash University laboratory has multiple funding streams to study HIV latency reservoirs, including a trial of Zolinza (vorinostat). Frank Maldarelli He’s the head of the Clinical Retrovirology Section at the HIV Drug Resistance Program of the National Cancer Institute in the National Institutes of Health. Stemming from his extensive HIV drug resistance research, Maldarelli is focusing on what happens to HIV when ARV therapy is intensified—a possible component of an approach to a cure. David Margolis The University of North Carolina researcher works with HDAC inhibitors as a way to flush HIV from its hiding spots. Data reported this year suggest one drug, Zolinza (vorinostat), is working as hoped, and he’s busy studying other drugs to target HIV reservoirs. Martin Markowitz As the clinical director of his namesake lab at the Aaron Diamond AIDS Research Center in New York City, Markowitz and his team study several areas, including newly infected individuals and the role of the gastrointestinal tract.

Javier Martinez-Picado The research professor at the AIDS Research Institute in Barcelona, Spain, studies how HIV causes disease in newly infected people; he also seeks to improve ARV treatment and reduce drug resistance, and he contributes to vaccine research. John Mellors The chief of infectious diseases at the University of Pittsburgh also serves as the principal investigator of the Pittsburgh AIDS Clinical Trials Unit, as well as the director of the Virology Core Laboratories for the AIDS Clinical Trials Group and the Microbicide Trials Network.

Françoise Barré-Sinoussi

Santiago Moreno The professor of infectious diseases at the Alcalá de Henares University is also chief of the infectious diseases department of the Ramón y Cajal Hospital, both in Madrid, Spain. One of his studies suggests that HIV med maraviroc might have anti-reservoir activity. James Mullins The professor of microbiology, medicine and laboratory medicine at the University of Washington is working to find an HIV vaccine. He leads one of the two labs that did genetic analysis of the virus in the RV144 vaccine trial in Thailand, which showed some protection against HIV. Una O’Doherty She’s an associate professor of pathology and laboratory medicine at the Hospital of the University of Pennsylvania. She’s looking for the most accurate and practical methods for measuring reservoir size. Sarah Palmer Based at the Karolinska Institute in Sweden, she’s studying and validating technology needed to measure persistent infection— tools needed to conclude that a sterilizing cure is, in fact, a sterilizing cure.

(BARRÉ-SINOUSSI, DEEKS) COURTESY OF IAS/STEVE SHAPIRO; (MARGOLIS) COURTESY OF UNC SCHOOL OF MEDICINE

Marie-Capucine Penicaud Responsible for research promotion at IAS, Penicaud was the “Towards an HIV Cure” project manager. B. Matija Peterlin The professor of medicine, microbiology and immunology is also the head of a namesake lab at the Department of Medicine at the University of California at San Francisco. Peterlin and his team study T cell responses at the molecular level and efforts to eliminate viral reservoirs. Guido Poli As an immunologist at the San Raffaele Scientific Institute in Milan, Italy, Poli and his team study how HIV affects T cells. He also coordinated the unification of several European and African cohorts of long-term nonprogressors into a single database. Anna Laura Ross She heads the HIV Vaccine Research Office of the French National Agency for Research on AIDS and Viral Hepatitis (ANRS). The Baylor Research Institute, Inserm Transfert, Roche and ANRS have formed a long-term collaboration to develop therapeutic vaccines targeting dendritic cells, a special type of immune cells. Jean-Pierre Routy The hematologist and researcher at the Research Institute of the McGill University Health Centre in Montreal, Canada, is working on studies using IL-7 or a therapeutic vaccine based on dendritic cells or chloroquine (a common anti-malaria drug) in addition to ARVs to knock out HIV. Christine Rouzioux At the virology lab of the Necker Hospital, the world’s oldest pediatric hospital, which is part of the public hospital system of Paris, France, Rouzioux explores treatment strategies that may lead to a cure, such as ARVs started during primary infection, continuous versus intermittent ARV therapy, CCR5 blocks, HDAC inhibitors like Zolinza (vorinostat) and immune-based therapies like IL-7.

Steven Deeks David Margolis

Guido Silvestri To better understand the pathogenesis of HIV—and thus advance cure research—Silvestri focuses on (non-chimpanzee) primates. But there’s a competing pool of resources, so he’s also working to get non-human primates dedicated to only cure research. Mario Stevenson The professor is chief of the division of infectious diseases at the University of Miami Miller School of Medicine. He also chairs the amfAR Scientific Advisory Committee. He studies the functions of viral accessory genes and mechanisms of viral persistence. Amalio Telenti He’s director of the Institute of Microbiology of the University Hospital Center of Lausanne and professor of medical virology at the University of Lausanne in Switzerland. Carine Van Lint She’s a professor at the University of Brussels studying the ways HIV works its way into the genetic material of CD4 cells and, in some cases, doesn’t budge, thereby hindering eradication efforts. Eric Verdin He heads the Laboratory of Molecular Virology at the Gladstone Institute of Virology and Immunology and is a professor of medicine at the University of California at San Francisco. His lab has focused on the mechanism of HIV reservoirs and on the immune modulators that inhibit HIV transcription. Ann Woolfrey A pediatric oncologist at Seattle Children’s Hospital, she specializes in bone-marrow transplants. She’s the lead investigator for many clinical trials of the Seattle Cancer Care Alliance, including a trial of a mechanism similar to one that cured Timothy Brown of HIV. John Zaia As the first endowed chair in gene therapy for the Department of Virology at the City of Hope Comprehensive Cancer Center, Zaia is developing gene therapies to treat HIV, cancer and other serious illnesses. In addition to his zinc finger nucleases work with “Hunter” Paula Cannon, he’s also working on stem cell research.

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Most likely it won’t be a single person—or a single research team or institution—to discover the cure for HIV. Just like it was with AIDS treatment research, it will be a massive endeavor requiring monumental collaborative work between test tube and animal scientists, the biotech and pharmaceutical industries, government and nongovernmental organizations, clinical trial experts and, of course, study volunteers. In addition to the Seekers on the previous pages, the 27 researchers below further exemplify the scientific leadership chipping away at the mystery of HIV persistence, many of whom are also testing novel ways to achieve either eradication or functional cures in the greatest number of people with HIV. Much of their work wouldn’t be possible without significant funding from sources such as the Martin Delaney Collaboratory at the National Institutes of Health; amfAR, The Foundation for AIDS Research; and the California Institute for Regenerative Medicine. Joseph Alvarnas and Richard Ambinder The City of Hope National Medical Center and Johns Hopkins University researchers are enrolling HIV-positive cancer patients into a transplant study that will involve donors with the CCR5-Delta32 mutation that confers resistance to HIV. They’re looking to duplicate the results of Timothy Brown’s case. David Baltimore A 1975 Nobel Prize recipient currently at the California Institute of Technology, Baltimore is exploring why existing ARVs don’t clear HIV reservoirs—a step in figuring out what will work. Paul Cameron The Melbourne-based Monash University scientist is focusing on tissue-based dendritic cells, which can become infected with HIV but don’t produce new virus. Figuring out what sets these cells apart from others can potentially be applied to curative approaches. Paula Cannon Using zinc finger nucleases (ZFNs) to genetically alter CD4 cells is proving safe and effective in treatment studies. Laboratory work conducted by Cannon of the University of Southern California suggests it might be possible to do the same thing with stem cells to rebuild entire immune systems resistant to HIV, thus curing the virus. There are no studies in humans yet. Julian Elliott Working with “Seeker” Steven Deeks, Monash University’s Elliott is testing the alcohol dependency drug Antabuse (disulfiram) as a way to flush HIV from its reservoirs. Like vorinostat (see “Seeker” David Margolis), disulfiram inhibits HDAC, a class of enzymes that keep HIV locked inside cells. Koh Fujinaga While some researchers find ways to tease out HIV from its hiding spots in reservoirs, Fujinaga of the University of California at San Francisco has set out to understand what, exactly, happens inside cells that end up sequestering HIV in the first place.

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Hiroyu Hatano Might a common blood pressure medication—an ACE inhibitor—successfully reduce fibrous tissue in lymph nodes, thereby allowing a more effective immune response against HIV, particularly in its hiding places? Hatano and her colleagues at the University of California at San Francisco are currently exploring this theory. Frederick Hecht and Daniel Douek Hecht of the University of California at San Francisco is working with Douek of the NIH (along with “Seeker” Sarah Palmer) to test their theory that ARV-unaffected immune system cells can make copies of themselves and the virus they contain, thus creating HIV reservoirs. Figuring out which cells are involved, and how, will allow researchers to design ways to clear the reservoirs and cure HIV. Timothy Henrich Was Timothy Brown cured of his HIV because of the chemotherapy, anti-CD4 cell antibody infusions, high-dose radiation or the HIV-resistant stem cells he received? It could have been one therapy or a combination of approaches. In working to figure out the answer, Henrich of Brigham and Women’s Hospital in Boston is helping drive new research. He also is investigating two more possible cure cases following bone marrow transplants. Keith Jerome and Hans-Peter Kiem Both of the Fred Hutchinson Cancer Research Center in Seattle, Jerome and Kiem are developing proteins known as endonucleases to target HIV. They’re also collaborating with Sangamo BioSciences to further study the use of gene therapies to render the immune system resistant to the virus. Mathias Lichterfeld The Massachusetts General Hospital researcher will explore whether a newly discovered group of CD4 cells, dubbed T-memory stem cells, are a main site of HIV reservoirs that re-emerge after ARV therapy is stopped. His group will look at drugs to purge virus from these cells. Robert Murphy The Northwestern University researcher heads the ERAMUNE-2 study (see the sister clinical trial by “Seeker” Christine Katlama), which intensifies HIV treatment to target actively replicating cells and then uses an Ad5 HIV vaccine, an immune-based therapy, to simultaneously attack the viral reservoirs. Preliminary results from both studies are expected soon. Douglas Nixon Did you know that several ancient viruses, called HERVs, are embedded in our DNA and can become reactivated? By exploring the antibodies our immune systems produce to control these viruses, Nixon of the University of California at San Francisco is hoping to develop a vaccine that can produce antibodies against another DNA passenger: HIV. Deborah Persaud and Katherine Luzuriaga The Johns Hopkins and University of Massachusetts researchers, respectively, have been studying a handful of adolescents who contracted HIV at birth yet have no detectable virus and are antibody negative after spending their childhoods on ARVs. How do their viral reservoirs and immune systems differ compared with people who became HIV positive as adults? They’re looking to find out.

(SILICIANO) COURTESY OF IAS/STEVE SHAPIRO-COMMERCIALIMAGE.NET; (PERSAUD) COURTESY OF JOHNS HOPKINS CHILDREN’S CENTER; (BALTIMORE) GETTY IMAGES/SCOTT WINTROW

Lawrence Petz He’s the chief medical officer of StemCyte, a company collecting cord blood—samples collected from placentas and umbilical cords after birth—from donors with the favorable CCR5-Delta32 mutation. A catalog of usable cord blood cells should help transplant researchers looking to duplicate Timothy Brown’s results. Quentin Sattentau “Big eater” (macrophage) cells can engulf cells containing HIV and potentially pass the virus along to other susceptible cells. Little is known about why this happens or what can be done about it; Sattentau of the University of Oxford hopes to learn more. Rafick-Pierre Sekaly and Mike McCune Sekaly of the Vaccine & Gene Therapy Institute of Florida and McCune of the University of California at San Francisco—in collaboration with “Seeker” Steven Deeks—have embarked on a seven-project initiative to define the nature and location of HIV reservoirs. Specifically, researchers hope to better understand how they’re created and maintained, and to test ways to eliminate them without broadly activating the immune system.

Robert Siliciano

Robert Siliciano The Johns Hopkins University scientist has irons in many cure research fires. His lab has tested Timothy Brown’s blood samples, as well as a variety of drugs with the potential to purge HIV reservoirs. And by looking at HIV-infected CD4s exposed to HDAC inhibitors, the lab hopes to determine why some cells appear reluctant to release their viral payload. John Tilton Some CD4 cells abort HIV infection; others go on to produce new virus immediately; and yet others end up locking the virus away. Tilton of Case Western Reserve University is focusing on these CD4 cell “subsets” to understand how HIV reservoirs are established and maintained.

Deborah Persaud

Paula Cannon

Linos Vanderkerckhove Curative treatments are only as good as the tools available to detect low (or no) virus in samples. Vanderkerckhove of Ghent University Hospital in Belgium is developing a new test to measure the size of the reservoir and what happens to it in the presence and absence of HIV treatment. Bruce Walker Many scientists are focusing on ways to purge the virus from otherwise unreachable cells—the so-called HIV reservoirs. Walker and his colleagues of the Harvard Center for AIDS Research are instead focusing on the mechanisms of immune control that help some people keep the virus tucked away without the need for ARVs. His work with long-term nonprogressors and elite controllers is considered to be an integral component of functional cure research. John Young Sulfonation is a type of chemical modification that needs to occur inside cells so that the virus can reproduce. Young, of the Salk Institute, thinks it may be possible to manipulate this, using safe and effective drugs, to help purge the virus from inactive cells in the body.

David Baltimore

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Judy Auerbach A “public sociologist” by training, Auerbach is a policy and research consultant who has worked tirelessly in the arenas of HIV/AIDS, women’s health and gender equity; she has a particular interest in advancing research that explores drivers of the epidemic and novel ways to prevent it. At AIDS 2012, she presented focus group research regarding PrEP attitudes among U.S. women. Jared Baeten and Connie Celum Both of the University of Washington in Seattle, Baeten and Celum led the landmark Partners PrEP study, which found 73 percent fewer HIV infections among HIV-serodiscordant heterosexual couples in Kenya and Uganda when the negative partner took a regimen of HIV meds. Partners PrEP helped pave the way for Truvada’s approval as the first-ever HIV prevention pill. Deborah Birx Managing a budget exceeding $1.5 billion, Birx oversees the U.S. Centers for Disease Control and Prevention’s international HIV activities. When it comes to global efforts to stem the tide of HIV transmission, you can bet Birx is helping lead the way. Susan Buchbinder At the Truvada-as-PrEP approval hearing in May, Buchbinder made clear that condoms and behavioral interventions alone have largely failed to end the HIV epidemic. She’s a strong proponent of PrEP and TasP. As a director of the HIV research section at San Francisco’s Department of Public Health, she’s working to roll out effective ARV programs that can be duplicated elsewhere.

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Myron Cohen A professor at the University of North Carolina at Chapel Hill, Cohen chaired a clinical trial that nearly single-handedly launched TasP efforts worldwide. The study, HIV Prevention Trials Network 052, found that ARV treatment reduces the risk of HIV transmission by up to 96 percent among serodiscordant heterosexual couples. Barton Haynes A Duke University professor, he heads the Duke Human Vaccine Institute and the Center for HIV/AIDS Vaccine Immunology. Haynes recently helped determine why some people in the Thai vaccine study (RV144) were more likely to either be protected or infected during the trial. It came down to two distinct types of antibody responses, a finding that will help drive vaccine research forward. Albert Liu What are the potential advantages and drawbacks of PrEP in the real world? Liu, director of HIV prevention intervention studies at the San Francisco Department of Public Health, is a lead player in the development of a demonstration project, to be conducted in San Francisco and Miami, exploring this key question. Margaret McGlynn Formerly the head of the global vaccine and antiinfectives program at Merck & Co., McGlynn currently serves as the president and CEO of the International AIDS Vaccine Initiative, one of the only nongovernmental, nonprofit organizations focusing solely on the development of safe, effective and accessible preventive HIV vaccines. Nelly Mugo An OB/GYN-trained physician at the Kenyatta National Referral Hospital in Nairobi, Mugo has spent a good chunk of her 14 years in HIV research dedicated to prevention research, notably the study of PrEP and vaginal microbicides—two strategies desperately needed to empower at-risk women to protect themselves against HIV. Zeda Rosenberg She heads the International Partnership for Microbicides, an organization based in Silver Spring, Maryland, with a singular mission to provide women with safe, effective and affordable products they can use to protect themselves against HIV, and to make these products available as quickly as possible where the need is most urgent.

Myron Cohen

Mitchell Warren They don’t come much smarter than Warren, the executive director of AVAC, an advocacy powerhouse helping drive ethical development and global delivery of biomedical prevention approaches, vaccines, male circumcision, microbicides, PrEP and TasP.

(MCGLYNN) COURTESY OF UNIVERSITY AT BUFFALO; (MUGO, WARREN, COHEN) COURTESY OF IAS/MARCUS ROSE/WORKER’S PHOTOS

We can never end the AIDS pandemic with only an HIV cure. We’ll also need new technologies to prevent future infections. On that front we have what are called biomedical prevention efforts. They include: pre-exposure prophylaxis (PrEP, when HIVnegative people take ARVs to prevent infection), treatment as prevention (TasP, the idea that positive people on successful treatment have lower viral loads and are thus less likely to spread HIV), male circumcision (particularly among heterosexual men in Africa) and microbicides (gels, creams or rings for vaginal and rectal use that can inhibit infection). Efforts to develop a vaccine slowly continue. It’s true that medical approaches to prevent disease are sometimes met with skepticism—after all, few, if any, come without risks such as side effects and long-lasting problems like drug resistance—but the potential benefits of options now available appear thus far to outweigh potential risks. And importantly, research into kinder, gentler, easier-to-use and even more effective options continues steadily. The 13 people below are some of the leaders in the biomedical prevention field who have helped usher in a new era of safer-sex tools and continue to advance the science and policy needed to reduce the number of new HIV cases.

Dennis Burton With a seven-year, $77 million commitment from the National Institutes of Health awarded this past summer, Burton of the Scripps Research Institute in La Jolla, California, and his colleagues are figuring out ways to prompt the immune system to produce “broadly neutralizing antibodies.” The hope is that these will work better than regular antibodies, which do a lousy job penetrating HIV’s densely coated outer proteins and can’t stay one step ahead of the rapidly mutating ways of the virus.

A GLOSSARY OF NEED-TOKNOW CURE TERMINOLOGY Nelly Mugo

Berlin Patient. His name is Timothy Brown, and he is the first person to be cured of HIV. After being diagnosed with leukemia, he received chemotherapy and radiation to wipe out his immune system, which was reseeded with stem cells from a donor whose CD4 cells lacked the CCR5 receptor HIV needs to infect them (the donor inherited the genetic trait from both parents). Years later, no HIV capable of reproducing has been found in Brown’s body, and he remains off ARVs. Duplicating these results, using adult (and umbilical cord blood) donations and genetically modified stem cells—and without needing the lethal chemo and radiation—is a cure research priority. CCR5. To infect a CD4 cell, HIV must attach to two of its three receptors. HIV always uses the main CD4 receptor, which we all have. HIV also needs either the CCR5 or CXCR4 receptor. The most common form of HIV targets CCR5, particularly in the early years of infection. HIV med Selzentry (maraviroc) blocks this receptor. Finding ways to knock out CCR5, which serves no important purpose in the body, is a major goal of cure scientists.

Mitchell Warren

Margaret McGlynn

HDACs. Using drugs to turn on inactive HIV-infected CD4 cells (see HIV Reservoir below) can actually make people very ill. Instead, researchers are looking at the cellular proteins that keep HIV tucked away in these cells: histone deacetylases, or HDACs, being one group in particular. The cancer drug Zolinza (vorinostat) and the alcohol dependency drug Antabuse (disulfiram) are two very different drugs with one thing in common— they inhibit HDACs. HIV Reservoir. Current antiretroviral therapy is good at preventing CD4 cells from becoming infected and at blocking “active” infected cells from producing new HIV. However it’s not good against inactive, or latent, CD4 cells that harbor the virus; if they’re not active— and many lie dormant for decades—ARV meds can’t get at the virus. Cure researchers are determined to find ways to purge HIV from this reservoir. Interleukin-7, or IL-7, is a synthetic version of a naturally occurring messenger hormone. It’s being studied for its ability to prompt CD4 cell reservoirs to give up their HIV cargo without activating the immune system and making it go haywire. RNAi. “RNA interference” began when researchers found they could insert genetic fragments to “silence” the genes in petunias responsible for giving them their purple color. This technique is now being studied in a variety of diseases, including HIV, as a way to block the genes that stand in the way of a cure. Zinc Finger Nucleases, or ZFNs, are molecular scissors that can slice genes, rendering them useless. Sangamo BioSciences is experimenting with ZFNs as a way to clip genes that produce CCR5 receptors on CD4 cells. It’s also looking at using ZFNs to render the gene dysfunctional in bone marrow cells, which can be used to regrow immune systems that contain CCR5-free CD4s.

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All wars—hot, cold and metaphorical—are won or lost on the front lines. The fight against HIV/AIDS is no different. Without the science—a cure, a vaccine and other biomedical prevention—the battle cannot be won. However, the science is only half the battle. We’ll need leadership to get funding to implement those tools. We’ll also need legions of fighters to defend the dignity of people living with the virus, which includes a world without stigma and discrimination. The 23 advocates, politicians and celebrities below are just a fraction of the countless souls across the globe doing the hard work of persuasion. They represent the many kinds of inroads needed to surround and suffocate HIV until it finally surrenders. Bob Bowers The HIVictorious Inc. founder (a.k.a. “One Tough Pirate”) was one of the most persuasive generals this year recruiting online for the POZ Army (pozarmy.com), a global grassroots collective of people fighting for the cure for AIDS and treatment for all until a cure is found. Timothy Brown As the first person cured of HIV, Brown (a.k.a. “the Berlin Patient”) represents a milestone in the AIDS pandemic. Although he could have chosen to live a quiet life, Brown has embraced his historic role. In July, he launched the Timothy Ray Brown Foundation to find a cure for HIV. Gus Cairns A jack of all trades, he’s a psychotherapist, counselor, journalist (he writes regularly for aidsmap) and a representative to the executive committee of the British HIV Association. Cairns is most interested in emerging HIV prevention technologies. Microbicides, PrEP, TasP—he’s a go-to thought leader regarding them all.

Thomas Frieden The director of the Centers for Disease Control and Prevention (CDC) has transferred many of the lessons he learned as the former New York City health commissioner. His once-controversial introduction of treatment as prevention and his advocacy for routine HIV tests are now mainstream. Kevin Frost The Foundation for AIDS Research, through its amfAR Research Consortium on HIV Eradication, is one of the major funders of cure research (and it is the home of many researchers on the POZ 100). As chief executive officer of amfAR, Frost is a key influencer of its priorities. Jim Himes Representative Himes (D–Conn.) this year introduced the Cure for AIDS Act (with Representative Barbara Lee, see below). The bill would fund research and development for an HIV cure by establishing a $100 million program within the Congressionally Directed Medical Research Program managed by the Department of Defense. Richard Jefferys This longtime AIDS advocate now works for the Treatment Action Group, serving as its basic science, vaccines and prevention project coordinator. He is well versed in the pathogenesis and immunology of HIV infection, and his blog is a go-to source for in-depth scientific discussion of those issues. Elton John In the past 20 years, the Elton John AIDS Foundation has raised more than $275 million. However, the legendary singer and songwriter isn’t resting on those laurels. Our cover guy also authored Love Is the Cure earlier this year, a memoir about his life in the fight against HIV. (Read an excerpt on page 34.) Kate Krauss In her role as the executive director of the AIDS Policy Project, Krauss ensures that the organization advocates for HIV eradication research, secures funding for treatment and demands leadership on AIDS in Congress.

David Evans As the director of research advocacy for Project Inform, Evans seeks to improve treatment, prevention and access to care, and to find a cure for HIV. The former POZ and AIDSmeds senior editor coauthored a report in March that outlines next steps for cure research.

Stephen LeBlanc Although his professional role as an intellectual property attorney takes up the majority of his time, his personal passion as an AIDS advocate gets plenty of attention through his position as an AIDS Policy Project board member. He has coauthored many reports on cure research.

Anthony Fauci The head of the National Institute of Allergy and Infectious Diseases remains a key player in what HIV research gets federal funding, including the cure. So it was a big deal when Fauci said at the XIX International AIDS Conference “we can end the HIV/ AIDS pandemic.”

Barbara Lee Representative Lee (D–Calif.) has championed HIV/ AIDS causes in Congress for more than a decade. In 2012, Lee introduced the Cure for AIDS Act (with Congressman Himes) and the Ending the HIV/AIDS Epidemic Act. In 2011, she introduced a sex-ed bill called the Real Education for Healthy Youth Act (with Senator Frank Lautenberg [D–NJ]) and the Repeal HIV Criminalization Act.

David France The director of How to Survive a Plague, an Oscarworthy documentary about the early history of AIDS treatment activism, restored the stature of activists such as AIDSmeds founder Peter Staley and many others. The AIDS journalist and first-time filmmaker has inspired a new generation of activists.

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Kali Lindsey His experiences as vice president of federal government affairs at NAPWA and senior director for federal policy at Harlem United have served him well as the director of legislative and public affairs for the National Minority AIDS Council.

Greg Louganis Capitalizing on the opportunity of media attention during the 2012 Summer Olympics in London, the five-time Olympic medalist and current diving consultant used his moment in the spotlight to share his insights with CNN about living with HIV. Jim Pickett The director of prevention advocacy and gay men’s health for the AIDS Foundation of Chicago also wears another hat as chair of the International Rectal Microbicides Advocates (or IRMA, “the bottom line in HIV prevention”). Pickett is undeterred by subjects many would prefer to ignore. Jamar Rogers A fan favorite and semi-finalist on season 2 of the singing competition The Voice, he earned loyal followers on the show this year not only by singing his heart out, but also by sharing his struggles with overcoming addiction and living with HIV.

Barbara Lee

(LEE) BILL WADMAN; (FRANCE) CHRISTOPHER BAYER; (FROST) COURTESY OF AMFAR; (BROWN) TOBY BURDITT

Paul Semugoma This physician and vocal gay rights advocate in Uganda—a country not exactly known for embracing LGBT equality—mesmerized a standing-room-only crowd at the International AIDS Conference in July with a passionate call for providers and communities to acknowledge that LGBTs are everywhere and in desperate need of HIV prevention services. Matt Sharp The veteran AIDS activist has had numerous roles in the HIV community, especially as a treatment and cure research advocate. He’s also been in many clinical trials, putting his own health at great risk. His latest involvement— a gene therapy protocol for a cure based on the success of Timothy Brown—is perhaps his most daring.

Kate Krauss

David France

Jeff Sheehy The director of communications at the AIDS Research Institute at the University of California at San Francisco is a longtime activist for LGBTs and people with HIV. As a patient advocate on the board of directors for the California Institute for Regenerative Medicine, he helps keep curing HIV high on its agenda.

Kevin Frost

Sean Strub The Sero Project, the latest effort by the POZ founder, promotes empowerment of people with HIV with a particular focus on ending inappropriate criminal prosecutions of people living with the virus. The impact of HIV criminalization on stigma, discrimination, testing and prevention cannot be denied. Michael Tikili Tikili and others, including veterans of the movement and newbies alike, were arrested in July during the XIX International AIDS Conference outside the White House demanding major changes to HIV policies. The young community organizer for Queerocracy and Health GAP certainly solidified his street cred.

Timothy Brown

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HEROES

BY TRENTON STRAUBE

Breaking Bad Cycles In 2002, Ken Harvin was living in Summerton, South Carolina, helping develop statewide public charter schools. He learned he was positive via a mobile HIV testing van at a local park. “I kept my status to myself,” recalls the ex-Marine. To maintain the secrecy, he traveled 54 miles each way to get treatment where folks wouldn’t recognize him. He took his meds as directed but attained little knowledge of the virus and his health. That cycle of stigma and ignorance ended when he moved to the Bronx, New York, and sought care at Housing Works in 2009, eventually enrolling in its job-training program. “That paved the way for me to get full-time employment as a care manager and to give back to the very place and community that brought me into the program,” he says of Housing Works, which ﬁghts the dual epidemics of AIDS and homelessness. To help raise awareness of both crises among the African-American community, Harvin participated this fall in Braking the Cycle, a Housing Works’ fundraising bike ride from Boston to New York. What three adjectives best describe you? Energetic, optimistic and conscientious. What is your greatest regret? Not completing my undergraduate studies in Georgia. However, today I am working on a CUNY [City University of New York] bachelor’s degree with a focus on community health and urban studies. What keeps you up at night? The undesirable conditions that many of [Housing Works’] clients are subjected to as a result of where they live. Conditions that are not healthy for people with challenged immune systems and other health concerns. If you could change one thing about living with HIV, what would it be? The mind-set that it’s a death sentence.

If you had to evacuate your house immediately, what is the one thing you would grab on the way out? My 8-year-old cocker spaniel Tinkerbell and a pair of my Cole Haan shoes.

48 POZ OCTOBER/NOVEMBER 2011 poz.com

STEVE MORRISON

What person in the HIV/AIDS community do you most admire? Magic Johnson of the LA Lakers and his commitment to invest in marginalized communities like Harlem, [New York,] and Eastover, South Carolina.

SURVEY 7

Have you ever been denied any other service because of your HIV status?

❑ Yes ❑ No 8

Have you ever filed a formal complaint against someone for HIV-related discrimination?

❑ Yes ❑ No 9

Have you ever stood up to someone for HIV-related discrimination?

❑ Yes ❑ No 10 Has fear of HIV-related stigma or discrimination prevented you from disclosing to any of the following? (Check all that apply.)

❑ Family members or friends ❑ Boss or coworkers ❑ Potential sexual partners ❑ Health care professionals 11

DEALING WITH

DISCRIMINATION

HIV-related stigma and discrimination come in many forms and pose some of the greatest challenges of the epidemic. They affect a person’s ability to access education, care, support and treatment. POZ wants to know: Have you ever had to deal with discrimination?

ISTOCKPHOTO.COM/CATALIN PLESA (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

❑ Yes ❑ No 12

What year were you born?__ __ __ __

Have you ever experienced HIV-related discrimination from a friend or family member?

What is your gender?

Have you ever experienced HIV-related discrimination at your workplace?

Have you ever experienced HIV-related discrimination at a doctor’s office or other health care facility?

Have you ever experienced HIV-related discrimination at your church or place of worship?

❑ Yes ❑ No 6

❑ Lack of education ❑ Other

❑ Yes ❑ No

❑ Yes ❑ No 5

What do you think is the biggest driver of HIV-related stigma and discrimination?

❑ Fear ❑ Homophobia

Have you ever experienced discrimination because of your HIV status?

❑ Male ❑ Female ❑ Transgender ❑ Other 16 What is your sexual orientation?

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other

❑ Yes ❑ No 4

Do you think the HIV/AIDS community is doing enough to fight stigma and discrimination?

❑ Yes ❑ No

❑ Yes ❑ No 3

Has fear of HIV-related stigma or discrimination prevented you from seeking care or treatment?

Have you ever been denied housing or accommodations because of your HIV status?

❑ Yes ❑ No

What is your ethnicity? (Check all that apply.)

❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify):___________________ 18 What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #184, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424