EMPOWERING THE HIV COMMUNITY SINCE 1994
A SMART+STRONG PUBLICATION JUNE 2014 POZ.COM $3.99
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Oakland long-term survivor Kehn Coleman
San Francisco and Oakland sit on different sides of the same bay. But when dealing with AIDS, they are worlds apart. Rich, experienced, largely white San Fran meets HIV head-on, while underfunded, understaffed and heavily African-American Oakland battles the epidemic undergroundâ€” or out on its streets. How Oakland became the new epicenter for the black AIDS epidemic.
Former pop star and former heroin addict Sherri Lewis has been to the brink and back during her 20-year trip with HIV. Today, the new media maven jolts people into awareness with her podcast, Straight Girl in a Queer World. Oh, Sherri!
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Ty Ross at his ofﬁce in March 2014. He appeared on the ﬁrst cover of POZ.
COVERING THE PANDEMIC
Although our domestic ﬁght against HIV/AIDS is different from the other battles against the virus overseas, our struggles have more in common than we realize. Go to poz.com/global to read current news and opinion on HIV/AIDS from around the world.
Together, our stories can change the way the world sees HIV/AIDS. They inspire others in the ﬁght and break down the shame, silence and stigma surrounding the disease. Go to poz.com/stories to read stories by others like you and to submit your story.
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32 POZ AT 20 Twenty survivors—all of whom once appeared on the cover of POZ—share their stories and words of wisdom. BY TIM MURPHY 3 FROM THE EDITOR
Alive and Kicking
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10 POZ Q+A
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Ty Ross—the HIV-positive gay grandson of Barry Goldwater—reflects on the aftermath of his revealing 1994 POZ interview.
16 POZ PLANET
Meet the new AIDS poster child • POZ Stories: Byanca Parker • a new memoir by an AIDS doctor takes the pulse of our health care system • the state of Louisiana • Adrain Chesser discloses his AIDS diagnosis—and photographs the reactions • Say What? Egyptian army edition • Adam Zeboski is a Truvada Whore • Douglas M. Brooks is the new director of the Office of National AIDS Policy • HIV criminalization conference to take place in Iowa
Longtime activist Peter Staley writes about the divisive effect of HIV-related stigma among gay men.
24 CARE AND TREATMENT
HIV rates in black MSM linked to sexually transmitted infections and economics • seeing the doctor is vital when CD4s are low • inflammatory marker linked to raised risk of death • big pharma plotted to prop up South African drug patents • half-baked headlines claim that pot stops HIV
26 SURVEY SAYS
Have you been tested for hepatitis C?
27 RESEARCH NOTES
Genetically tooled antibodies to fight HIV • benefit of counseling with computers • are memory stem cells the backbone of the viral reservoir? • teens and young adults with HIV often delay entering medical care
48 IN MEMORIAM
POZ reflects on those lost to HIV/AIDS.
POZ 100: CALL FOR NOMINATIONS POZ is now accepting nominations for the 5th annual POZ 100. Go to page 11 to find out how you can nominate someone. This year’s list celebrates youth.
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Alive and Kicking
REMEMBER POZ FROM back in the day, not as a staff member as I have the privilege of being today, but as a reader. I can’t say for sure which issue I actually saw first, but I do recall being captivated by the Pedro Zamora cover. I didn’t know it then, but that was only the third issue of the magazine. It was 1994 and I was a newbie, having tested HIV positive just two years before. I was still very scared about my future. People dying at an increasingly relentless pace was the reality. The miracle of effective treatment in 1996 had yet to happen, which makes the decision to launch POZ so courageous. Despite naysayers from all sides, Sean Strub and his collaborators believed those of us living with HIV/AIDS deserved a magazine that offered us hope, provided us with information we needed to stay healthy and celebrated our lives by telling our stories. Their belief in us—and therefore me, by extension, although I was unknown to any of them at the time—was exactly what the doctor ordered. I’m not alone when I say that the magazine was a vital part of my learning to live with the virus. I thank Sean and his team for helping me when I needed it most. As POZ marks its 20th anniversary with this special issue, we check in with 20 guys and gals who’ve graced our cover, including Sean. He has been busy since he sold POZ 10 years ago. Go to page 32 to catch up with Sean and the additional cover subjects. The other 19 people are: Bill T. Jones, Mary Fisher, Lisa Tiger, Larry Kramer, Magic Johnson, Shawn Decker, Hydeia Broadbent, Mark Harrington, Monica Johnson, Tony Valenzuela, Greg Louganis, Ruben Rodriguez, Waheedah Shabazz-El, Charles King, Phill Wilson, Timothy Ray Brown, Lafayette Sanders, Cecilia Chung and Jamar Rogers.
These folks not only embody the diversity of the epidemic, but also represent the spirit of survival. Their stories will inspire you. The first person to grace a POZ cover is Ty Ross, the HIV-positive gay grandson of Barry Goldwater, a.k.a. “Mr. Conservative.” His cover story was written by the renowned author, editor and writer Kevin Sessums. The revealing first-person narrative caused a stir. Search “Ty Ross Comes Clean” at poz.com for the juicy details. Go to page 10 to read our Q&A with Ty about his life 20 years later. This issue spotlights those of us who have survived, but we would be remiss if we did not also honor our dead. So many passed too early. Go to page 48 for our remembrances. We’re proud to have served the HIV/AIDS community for two decades. We would much rather there were no need. Until then, POZ will continue as a mirror for the community.
ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF firstname.lastname@example.org
Want to read more from Oriol? Follow him on Twitter @oriolgutierrez and check out blogs.poz.com/oriol.
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The women of Common Threads
money from our premiums whoever pays them. We will have to be very aggressive to stay alive throughout this. The Affordable Care Act (ACA) is about the worst thing that could have happened to those of us with HIV/AIDS. RICHARD, CHICAGO
“Empowering Entrepreneurs” (March 2014) featured the work and the women of Common Threads. The small-group training session designed to help HIV-positive women face their diagnoses has evolved to include a microenterprise marketplace. This is a wonderful, inspiring and encouraging story. Each woman has inspired me to know that I can and will be a part of something outside of myself. I can help another woman know that she is not alone, and through encouragement I can help her realize her potential to lead the way for other women experiencing the negative issues we face living with the virus. Thank you for all you have done for me through your stories.
stopped by AIDS at the height of their career. How can some of us return to our businesses when we have lost a decade? All we need is a hand up—not a handout. We lost so many creative people to AIDS, and we are losing more creative people each day as we are not ﬁnished with our work, but we need someone to believe in us. There are so many smart people out there. Don’t lose us. Help us. JOE MONROE, SANTA FE, NEW MEXICO
MARGARET BIRIR, ELDORET, KENYA
It’s great that someone with long-term AIDS can become an entrepreneur. I think about all the people who were
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Wow…I have been positive for 18 years, and it is hard to believe that things have gotten worse instead of better. The ACA has done nothing so far but triple my premium and reduce my coverage over the last three years. I was really hoping things would get better. JIM, LA CROSSE
It is a shame that BCBS has decided not to accept Ryan White Funds to help pay the premiums of those with HIV in Louisiana. This could start a trend by BCBS in other states. We must do something about this now.
FENICIA ROSARIO, GREENVILLE
This is an exemplary piece that makes me feel connected. I am based in Kenya, and your message to women elates my spirit and makes me feel that l am not alone. It would be my pleasure to make a connection with you as we also have a network of women living with HIV and it would be advantageous to get to know you.
JERY, SIOUX FALLS
The article “Louisiana Insurer Rejects Ryan White Funds for ACA Premiums” (February 10, 2014) reported the news that Blue Cross and Blue Shield (BCBS) of Louisiana will no longer accept third-party payments for its premiums. Lambda Legal has since ﬁled a lawsuit against BCBS and two other Louisiana health insurers. Let’s be adults. Insurance companies including BCBS want us to die. They make no
In my opinion, the insurance companies in Louisiana are taking any position they can ﬁnd to not insure high-cost illnesses. In this case, they have chosen the most vulnerable people in a state where they will suffer little to no community backlash. ANDREW, ATLANTA
This frightens me to no end. I am so disappointed in political people for denying Medicaid expansion in Republican states. Why? Just to prove a point. DEREK BROWN, LAFAYETTE
FIGHTING OURSELVES In his blog post “Gay-on-Gay Shaming: The New HIV War” (March 1, 2014), AIDSmeds founder and longtime activist Peter Staley calls out the HIV-related stigma happening in the gay community. Turn to page 23 to read an excerpt. The move to mobilize our communities should also include a celebration of those learning to live, love and raise each other up regardless of HIV status. Your article reminds me that we have much work to do, but our contribution in this century will be memorable for all times. ALFONSO CARLON
I’m a long-term survivor, and it sickens me to watch what’s happening in our community. Where is the love and support we used to show one another? And more importantly, how can we get it back? TOMMYJ
I think the author did an exemplary job describing the theme of gay-on-gay stigma. But I think it may be useful to remember stigma continues to exist in many other aspects of our world. ANDREW
After having been left at a restaurant, on the dance ﬂoor and twice in my own apartment after disclosing— despite my good looks and great sense of humor—I decided that serosorting is the only option. Why did the Minotaur live in the labyrinth? To keep himself away from the rest of the world. EXILED FROM LIFE
(GAVEL/PILLS) THINKSTOCK; (STALEY) GETTY IMAGES/JAMIE MCCARTHY
At the end of the day, this just seems plain stupid. BCBS wants your insurance premium money, but not if it comes from Ryan White Funding. The Centers for Medicare & Medicaid Services has clariﬁed its position, and now BCBS is being intransigent. I wonder what kind of medical legalese it’ll come up with to refuse more expensive treatments needed if people get sick from this childish tug-of-war?
CALL FOR NOMINATIONS!
POZ 100 celebrating
POZ is seeking nominations for the 2014 POZ 100. This year’s list will celebrate individuals under 30 who are making a difference in the ﬁght against HIV/AIDS. Early deadline for nominations is August 8, 2014. Established in 2010, the POZ 100 recognizes individuals and organizations that are committed to ending the HIV epidemic. This year, the spotlight will be on youth (under 30) and will include individuals who are HIV positive and negative. Visit POZ.com/poz100_youth to submit a nomination (self-nominations accepted) and to ﬁnd more info. Don’t delay! Submit your nomination for the 2014 POZ 100 today!
THE POZ Q+A
BY ORIOL R. GUTIERREZ JR.
Interior designer Ty Ross at work in Arizona.
SURVIVAL BY DESIGN
Y ROSS GOLDWATER IS AN INTERIOR DESIGNER AND THE HIVpositive gay grandson of Barry Goldwater, a.k.a. “Mr. Conservative.” A native of Arizona, his grandfather served the state and our country as a United States Air Force general, as a five-term U.S. senator and as the 1964 Republican presidential nominee. Ross also holds the distinction of being the first face on a POZ cover. His friend celebrity photographer Greg Gorman first asked Ross, who already was out as HIV positive, if he would talk. Gorman then shot the cover and the accompanying images. Kevin Sessums, known at the time for his Vanity Fair celebrity interviews and his long stint at Interview magazine, wrote the 1994 cover story. The first-person narrative—which takes place in Los Angeles, where Ross was living at the time—caused a stir. (Search “Ty Ross Comes Clean” on poz.com for the juicy details.) Spoiler alert: Sessums and Ross hook up. We pick up the rest of the story from there. So, the hook up…
Yes, Kevin Sessums and I hooked up. When you’re gay and single, you don’t put some chastity belt on. You’re a man, and that’s kind of how things happen. People get a little shocked by that. Hooking up with me was not necessarily him doing me a favor, like “Look at me, I’m having sex with a positive person.” However, I felt he hooked up with me to make the story more salacious. I was a little irritated by that.
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He did read me the article before it was published. I had said it was OK because I didn’t want to say to him, “Hey, maybe don’t put that hook-up stuff in.” It was a distraction to the narrative, which was already interesting. The POZ article reached the Vanity Fair crowd, people with HIV/AIDS and the general public. There were some in the conservative media saying things like, “Look at him, he’s such a slut.” But since then, the article really hasn’t followed me. Why do you think that is—your family, your personality or something else?
I’m shy and not a real public person, although I was always hoping that I could use my family name to advance gay rights. I live in Arizona, a very conservative state, and a lot of my clients are Republicans, so I have to hold back when I’m talking politics. The first thing that comes up is
The first POZ cover guy reflects on the aftermath of his revealing 1994 interview and his life today.
whether I’m a Republican like my grandfather. I have to say, “No, I’m exactly the opposite. I’m a bleeding-heart liberal.” And sometimes with clients that doesn’t go over well. I’ve experienced blowback, so I’ve learned to shut my mouth with people. Let’s talk about your grandfather. What was it like coming out to him as gay and as HIV positive?
I had never been in the closet. My grandmother knew I was gay since I was a kid. She’d say, “Isn’t he a special kind of guy?” My grandfather knew I was gay since I was a teen. He was fine with it, and it was never an issue. He wasn’t terribly religious. It was all kind of a non-issue in the family. In the early 1990s, I went to go protest in support of a local ordinance to include sexual orientation and gender identity into the city charter, and there was this raucous debate. My grandfather happened to be at our house when I got back. “I heard you went downtown. Good job, standing up for what you believe in,” he said. He was aware I was in POZ. I was never dealt any shame about it or met with adulation. It was neither, which was good for me because I didn’t have to feel any guilt. We never really talked about me being HIV positive. Without a doubt, he knew I was positive and was supportive of me more in that I was involving myself in standing up for gay rights. Tell us more about your HIV diagnosis.
I found out in 1989 from a doctor in Los Angeles who suggested I get tested. I sort of assumed that I was positive, just based on all the sex I had during the ‘80s. Some of it was protected, and some of it wasn’t. A nurse told me over the phone. They didn’t even call me into the office to say, “Oh, I’m sorry, you’re positive.” Nowadays, they explain things and tell you how to move forward. There was no HIV drug on the market yet except for AZT. I didn’t want to deal with it, but I went back to the doctor to
get my T cells checked. The viral load test wasn’t available at that time. My T cells ended up being 700, which made me feel a little relieved. I knew I had a little time left, but at the same time it was a death sentence. In the back of my mind, I was thinking in the next four or five years I’m going to die. I moved back to Arizona in 1991 to be near my family and to try living a stress-free life. After decades of living with HIV, how is your health today?
I’m a long-term nonprogressor, so I don’t take any HIV treatment. My viral load is undetectable naturally. I didn’t know that until the mid ‘90s when I was viral load tested. However, last
forming by way of diet and exercise, then I can postpone treatment for as long as possible. Hav ing already sur v ived HI V, I thought I was set, but now cancer has given me a new reason to watch what I eat. Last summer, I stopped eating red meat and pork. Now I have mainly vegetables, limit animal protein to organic chicken and fish, and limit sugar and dairy. I don’t deny myself necessarily, but I try my hardest to eat healthy. Given your current health, how does it feel to be a long-term HIV survivor?
I have horrible survivor’s guilt, because I don’t think anybody should’ve died. It’s just unfortunate that so many people
“ I’m shy and not a real public person. I have to hold back when I’m talking politics.” summer I was diagnosed with prostate cancer, and now I’ve got the double whammy going on. I had changed my general practitioner because my hea lth insu ra nce changed slightly. My new general practitioner went a bit deeper with a stress test for my heart and a prostate specific antigen (PSA) blood test. My PSA level came out elevated. It was 5.0. When I got tested again it was 4.9, so it hadn’t moved much. Then I went in for a biopsy and they found cancer cells. My goal in life now is to keep tumors from forming. Tumors form inside your prostate and then move to the edge of your prostate. From there, the tumors can metastasize in your body and create problems. If I can keep them from
had a slightly weaker immune system that couldn’t fight HIV off. When I was single it was terrible. Everybody I met just didn’t get it. People just don’t understand HIV. They don’t understand that it’s pretty difficult to catch. It’s not just something that you catch capriciously. People just don’t understand that. They hear “HIV” in their heads, and they see images of people dying, and they don’t want to have anything to do with you, which is tough. Fortunately, I have a partner who is understanding and educated. We’ve been together eight years. Since he’s also HIV positive, it works because we’re on the same page. I can’t imagine what it would be like to be positive and single again. ■
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BY TRENTON STRAUBE
MEET THE NEW When Vincent Chevalier and Ian Bradley-Perrin decided to collaborate on a poster for the direct-action arts project “poster/VIRUS”—part of Canada’s AIDS Action Now—they built upon the provocative phrase “Your Nostalgia Is Killing Me.” Their resulting poster depicts the bedroom of a teenager obsessed with AIDS. The artists found all the source materials online—including the laptop image of Gaetan Dugas, a.k.a. Patient Zero—and they used drafting program Google SketchUp, which was important, Chevalier says, “because the Internet and its viral character contributed to AIDS nostalgia. Everything is accessible without any context, and without that context, awareness just becomes empty. Our ’90s teenage bedroom is an ahistorical K-hole.” The imagery The imagery in refers to the the poster refers canon of AIDS to the developing art and activism. canon of both AIDS art and the history of AIDS activism— and to what gets left out of this canon. “The response has been mixed,” BradleyPerrin says. “For younger people, there’s an uneasiness to living in the shadow of such a huge legacy of political action. That being said, many people took a
statement about the politics of history as an attack on personal memory.” “Where I notice a type of nostalgia,” Chevalier says, “is from young artists recycling the same representational strategies. I mean, how may condom dresses have we all seen? We all know AIDS constantly
evolves, yet our cultural response seems to be stuck on auto-repeat.” Adds Bradley-Perrin: “The poster is a call for a conversation that needs to be had, rather than a reference to something that’s already being discussed in the community.”
POZ STORIES: Byanca Parker When Byanca Parker was told she was living with HIV, she reacted like most anyone would. “It was scary and confusing,” she recalls, adding that matters were further complicated because, “at the time, I had no idea what HIV was.” There was good reason for her lack of knowledge—she was in sixth grade. Parker was born with HIV in 1993. Learning about her status did explain a lot of mysterious aspects of her life, such as why she took so many pills and got sick more often than other kids—and why her mother’s health continued to deteriorate (she died of AIDS-related complications in 2003). Since learning of her status, Parker,
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who lives in Dallas, has gotten to know many other people who were born with HIV. “I don’t think it’s fair,” she says, “for an innocent baby to come into this world fighting for its life because the parents didn’t know their status.” Despite the challenges of living with HIV—Parker acknowledges that the side effects of her meds can be “sometimes overwhelming”—she has learned how to accept her status and, in the process, build her self-esteem. Today, Parker describes herself as a “persistent, optimistic and intelligent” person who is sharing her story. “I want to help motivate others to get tested,” she says. “I want to help save lives.”
To read more about Parker and other POZ Stories, or to tell your own tale of empowerment, visit poz.com/stories.
(POSTER) AIDS ACTION NOW/VINCENT CHEVALIER AND IAN BRADLEY-PERRIN; (PARKER) COURTESY OF BYANCA PARKER
AIDS POSTER CHILD
Hot Dates / June 5: National HIV/AIDS Long-Term Survivors Awareness Day /
WHAT’S THE DIAGNOSIS?
The Philadelphia Center in Shreveport
(SAAG) COURTESY OF MICHAEL SAAG, MD; (THE PHILADELPHIA CENTER) COURTESY OF THE PHILADELPHIA CENTER
AIDS doc’s memoir takes the pulse of our health care system.
Michael Saag, MD, was training to become a cardiologist in the early 1980s when he was sidetracked by the emerging AIDS epidemic. Lucky for us. He soon became a leading researcher and doctor, opening an AIDS clinic in 1988 through the University of Alabama at Birmingham. In his memoir Positive: One Doctor’s Personal Encounters With Death, Life, and the US Healthcare System, Saag offers more than a fascinating viewpoint of the virus. Through heartfelt (and at times harrowing) stories, he weaves together a parallel narrative of the health care business. In 2014, Saag still sees many challenges facing people living with HIV. The biggest? “Internalized stigma. There’s a feeling that they have done something wrong. They feel ashamed about their status and don’t want to share it. That affects their health care. They hide medicines or don’t take them if somebody’s around.” Thanks to Obamacare, people can now avoid financial ruin if they have a serious illness, Saag explains, but our health care is still ailing. “We have a fragmented, chaotic system,” he says. “Unless we pull together like we did in the fight against AIDS, to fight against this inefficient system that’s ridiculously expensive, we’re never going to have the change we want.” Michael Saag, MD, founded an AIDS clinic in Birmingham, Alabama.
THE STATE OF LOUISIANA FIRST THE (REALLY) BAD NEWS: Under the Affordable
Care Act, a.k.a. Obamacare, if states expand their Medicaid coverage to include residents earning up to 133 percent of poverty level, then the federal government will pay for that coverage for three years. Nearly 20 states, including Louisiana, opted not to take up the offer. The average eligibility for parents to get Medicaid in these states is 47 percent of the poverty level (federal poverty level in 2014 for a single adult is $11,670; for a household of four, it’s $23,850). This creates a coverage gap because lots of folks can’t afford insurance and don’t qualify for subsidies. When low-income HIV-positive people in Louisiana tried to use their Ryan White funds to purchase health care, Blue Cross Blue Shield and two other insurers refused to accept the third-party federal payments—that is until Lambda Legal, an LGBT/HIV advocacy group, brought bro the matter to court. As of now, such payments will be accepted until November. Adding insult to injury, Governor Bobby Jindal has been privatizing a charity hospital system, operated by the state university, that traditionally provided care for the poor.
NOW THE GOOD NEWS: At least one prominent AIDS N s service organization is raising hell to fight these injustices. The P Philadelphia Center—named after the biblical reference to brotherly lo love—in Shreveport serves the northwestern parish of Louisiana. It h has always offered traditional social services such as prevention, te testing, housing, transportation and advocacy (HIV criminalization is currently a hot issue for them), but the ASO recently partnered with th the Martin Luther King Health Center, a system of free care clinics, to op open the part-time HIV Specialty Clinic for those without insurance. “T “This was a smart way for us to branch out and expand into primary me medical care,” says Philadelphia Center’s executive director Brett Ma Malone. Despite the state and federal cuts, he adds, The Philadelphia Cen Center has expanded all of its programs and doubled the budget from five years ago. How? By aggressively pursuing other revenue streams, suc such as city funds and private grants from larger foundations. “Please don don’t judge us by our governor,” Malone says. “We in Louisiana are not as ass-backwards as most people think. The metropolitan areas are progressive—and we are quite the hell-raisers!”
June 8: Caribbean American HIV/AIDS Awareness Day / June 27: National HIV Testing Day
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PREPPY STYLE HIV prevention gets a controversial fashion makeover.
(ZEBOSKI AND #TRUVADAWHORE) COURTESY OF ADAM ZEBOSKI; (IOWA) THINKSTOCK
Back in the day, LGBT activists reclaimed the word queer. And now Adam Zeboski is doing the same with “#TruvadaWhore,” a social media campaign and clothing line. The term refers to HIV-negative gay men who take the daily med Truvada as preexposure prophylaxis (PrEP), which can lower their risk of acquiring HIV by more than 90 percent. Zeboski, who is an HIV test counselor at the San Francisco AIDS Foundation, ﬁrst started Truvada as PrEP in the fall of 2012; he took a break but is now on a regimen again. He tolerates the meds just ﬁne—but not the stigma that can come with it. “There is a lot of slutshaming going on in this community,” Zeboski says. “I have heard the term ‘Truvada whore’ used as a pejorative, and many other PrEPsters I know have experienced it. #TruvadaWhore is about reappropriating the term.” It’s also about educating the
public. The phrase Adam Zeboski (inset) launched is an active hashtag a campaign to that can be looked counter stigma up on various social against guys taking Truvada media. From these as PrEP. platforms, including Zeboski’s blog, anyone can access information about PrEP. “The response has been overwhelmingly positive,” says Zeboski, a.k.a. pup bones, though he adds “there were the expected slutshamers and conspiracy theorists.” (The campaign, Zeboski points out, is a personal project that’s not afﬁliated with his job or Gilead, the maker of Truvada.) A few other facts he wants to stress: “I know this will come up, so let me just say, Truvada PrEP does not necessitate that one discontinues the use of condoms. And Truvada PrEP has not been shown to increase behavioral risk factors for HIV.” But try squeezing all that on a T-shirt.
LAW & ORDER
Fighting HIV criminalization Advocates from across the country are uniting to take a bite out of HIV criminalization laws. The ﬁrst “HIV Is Not a Crime” conference, held June 2 to 5 in Grinnell, Iowa, offers workshops and training sessions to educate and strategize ways to successfully combat this important issue. “Given the enthusiasm we’ve already seen, it’s obvious that community groups and organizations are eager for the tools to end HIV criminalization and discrimination in their states,” says Robert Suttle, assistant director of the Sero Project, one of the event organizers. “If we succeed in giving grassroots advocates what they’re asking for, this conference will create a response that will overcome the injustice and stigma experienced by people living with HIV.” Also in Iowa: State legislators are rethinking a law that criminalizes HIV exposure, even when a person’s viral load is undetectable, condoms are used and no virus is transmitted. Let’s hope Hawkeye lawmakers pass an updated bill based on facts, not fears. Anything less should be a crime.
POSITIVE LEADERSHIP The HIV community gave a collective cheer when President Obama announced that the new director of the White House Ofﬁce of National Douglas AIDS Policy M. Brooks (ONAP) would be Douglas M. Brooks, MSW. ONAP works with both public and private sectors to lower HIV rates, and it helps implement the National HIV/AIDS Strategy and the HIV Care Continuum initiative. Brooks was recently senior vice president at Boston-based Justice Resource Institute, a health and human service agency. Advocates are also cheering his personal insight to the epidemic: He is an openly gay AfricanAmerican man living with HIV.
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BY TRENTON STRAUBE
I HAVE SOMETHING TO TELL YOU When looking at Adrain Chesser’s portraits From left: Juliann, Duke and Cooper. from his viral I Have Something to Tell You The series doesn’t photo series, you’ll see tears and blank serve as activism or stares mixed in with laughter and smiles. education but rather as “an attempt to To many, the photographs capture the heal something.” complicated emotions and fears that come along with HIV disclosure. But to Chesser, a gay artist currently based in the Pacific Northwest, the images demonstrate something much deeper and internal than a shocking statement about the virus. He was diagnosed with AIDS nearly 10 years ago. At the time, Chesser says, he felt an emotional, almost physical reaction when he thought of telling his friends. So the artist turned to his camera to help him face his fear of abandonment and shame and to transform the disclosure process into a statement of love, hope and death.
“I never had this ‘I want to start a conversation about the perceptions and stigma of AIDS,’” Chesser says about his motivations for the project. “For me, this work was very personal. It was more of an attempt to heal something.” For each photo subject, the artist shot two rolls of film during a conversation about his diagnosis. By the project’s end, Chesser photographed 47 friends in what he describes as a “sacred space,” with the curtains from his childhood home serving as the backdrop and the phrase “I have something to tell you” setting up the emotional scene. The photo series (visit adrainchesser.com to check out a larger selection) opens up the viewers’ own experiences with loss and illness, and ultimately, it reveals Chesser’s undaunted support structure of friends. Nearly a decade later, the artist is living a happy, healthy life with HIV. —CASEY HALTER
“[Using a machine called the Complete Cure Device] I defeated AIDS with the grace of my God at the rate of 100 percent. And I defeated hepatitis C.”
Outlandish pronouncements about HIV cures are nothing new, but this ridiculous claim arrives from an unexpected source: Egypt’s army. Speaking at a press conference, Major General Ibrahim Abdel-Atti, head of the Cancer Treatment and Screening center, explained that he had a machine that could rid blood of both hepatitis C and HIV (the prevalence of chronic hep C in that country is 10 percent, the highest in the world). CNN reports that others in the Egyptian medical community called the announcement a “scientific scandal.”
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(I HAVE SOMETHING TO TELL YOU) COURTESY OF ADRAIN CHESSER; (TV) THINKSTOCK
Adrain Chesser discloses his AIDS diagnosis—and photographs the reactions.
THE BEST BLOGS AND OPINIONS FROM POZ.COM
THE NEW WAR
Peter Staley is a longtime activist and the founder of AIDSmeds. Here is an edited excerpt from his recent blog post “Gay-on-Gay Shaming: The New HIV War” on the divisive effect of stigma related to the virus among gay men.
IV-related stigma is worse than ever. Not the external kind, where a society is panicked about the new plague. The days of being shunned by hospital orderlies or funeral homes are over. I knew how to ﬁght the external kind. Today’s internal stigma, where a community shuns its own, is seemingly intractable and far more destructive. It breaks my heart that the worst of HIV stigma comes from my own community: gay men. It wasn’t always this way. I felt the opposite of stigma when I publicly disclosed my status in the late 1980s. Gay men with HIV received communal love and support. Once safer sex was entrenched, even sexual shunning became rare. Maybe it was our numbers. Maybe it was that many of us couldn’t hide it. Maybe it was our communal ﬁghting back. Regardless of the reasons, we felt like one community. I realize this view is skewed. I lived where social norms were heavily inﬂuenced by ACT UP and other community responses. The beginnings of gay-on-gay HIV-related stigma could be found in other places back then. But now it seems to be the norm, regardless of location. Now that people can take pills and
hide it, and now that we’ve had at least one generation of gay men who never witnessed AIDS, the sense that we’re all living with HIV is long gone. A culture of safer sex, where you always presume the person you’re sleeping with is positive, has been replaced with a culture of barebacking, where risk is magically reduced by deeply ﬂawed attempts at serosorting. The ﬂaws are hidden because HIV is now hidden. The result is a vicious cycle where HIV-related stigma leads to more HIV, while hiding its damage by instilling fear and shame in the newly infected. Their resulting silence makes HIV seem rare and avoidable, giving space for the next generation’s stigma. Activists have tried to break this cycle for years, to seemingly little effect. Countless ad campaigns, online and otherwise, have fallen on deaf ears. Can anything be done to change this sad status quo? Given our nowentrenched state of AIDS fatigue, I’m beginning to think the war on HIV stigma is lost. By all means, let’s keep ﬁghting it, if only to keep it from getting worse. But here’s the important thing: We can still win the war against HIV. All it takes are concerted public health interventions and the money to
fund them. We have the tools to reduce HIV incidence (“treatment as prevention,” or TasP; ﬂattening the “treatment cascade”; pre-exposure prophylaxis, or PrEP; etc.); we just have to apply them. Some localities are proving this. Washington, DC, launched an all-hands-on-deck effort in 2006 with promising results. New HIV cases have dropped 46 percent since 2007. By all accounts, HIV-related stigma is still alive and well in our nation’s capital, but they’ve worked around it. We need to plow through the continued apathy, ignorance and stigma. While the gay men who moralize and ﬁnger wag will most deﬁnitely slow us down, AIDS activists and our public health allies will ultimately win this war. So if you’re ﬁghting the good ﬁght and getting any stigmatizing pushback, then push ahead even harder. Give a good smack to that ﬁnger in your face, ignore the moralizing idiots online, and ﬁnd strength from your allies in this ﬁght. And know this: When this crisis is ﬁnally over, there will be two kinds of people remembered—those who fought to end it, and those who slowed us down. —Peter Staley blogs.poz.com/peterstaley
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CARE AND TREATMENT
BY BENJAMIN RYAN
HIV RATES IN BLACK MSM LINKED TO STIs AND ECONOMICS
The vastly disproportionate rates of HIV among African-American men who have sex with men (MSM)—an estimated one in five new U.S. infections occur among this group—are linked to unemployment, lower socioeconomic status and the presence of other sexually transmitted infections (STIs). In a six-city HIV Prevention Trials Network study of 1,500 black MSM, researchers found that, when compared with HIV-negative black MSM, those recently diagnosed with HIV were more likely to be unemployed, to have had receptive anal intercourse without a condom, and to have syphilis, rectal gonorrhea or chlamydia. “None of these things are just in isolation,” says Kenneth H. Mayer, MD, medical research director and co-chair of The Fenway Institute of Fenway Health and the study’s lead author. “You have to think about a bunch of different responses if you want to get a handle on decreasing the serious epidemic among black men who have sex with men.” Part of the problem, Mayer says, is that economic challenges may lead black MSM to remain fixed in certain communities, where there is already a high HIV prevalence, thus raising their chances of exposure to the virus.
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Keeping medical appointments is particularly crucial for HIV-positive people on antiretrovirals who have a low CD4 count. In an analysis of over 35,000 adults receiving care for HIV, investigators found that those with 200 or fewer CD4s who saw the doctor regularly were much more likely to fully suppress their virus when compared with those with similar CD4 levels who were not retained in care. The greater the CD4 levels, the more this difference narrowed between those retained and those unretained in care. Baligh Yehia, MD, an assistant professor of medicine at the Hospital of the University of Pennsylvania, says that his study’s findings indicate that health providers need to be especially vigilant about caring for people who first enter care late in the course of HIV disease. “This really gets to this whole idea,” he says, “which is what’s going on in medicine in general, of how to more personalize health care.” Yehia advises physicians to see late starters very frequently after they first enter care and to “make sure that [the patient’s] comorbid conditions and their symptoms are addressed, that they establish a strong relationship with their provider, and that we help them achieve viral suppression.”
(MAN) THINKSTOCK—MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY; (STETHOSCOPE) THINKSTOCK
SEEING THE DOCTOR IS VITAL WHEN CD4S ARE LOW
Inflammatory Marker Linked to Raised Risk of Death Certain “markers” of inflammation in the body are linked to an earlier death among ong people with HIV, including those coinfected with hepatitis C. This possibly helps ps explain the reason why, even when treated for the virus, particular HIV-positive people die before others. Researchers followed 400 HIV-positive alcohol abusers, half of whom also o had hep C, for three to five years between 2001 and 2009. The participants were tested ested for seven pro-inflammatory cytokines, also known as s markers, at the beginning of the study and then tracked acked to see if they died. (The study results are relevant to non-abusers as well.) Cytokines are proteins that alert white blood cells to flock to a zone of inflammation. In the short term, this process is good for the body—it’s how fungal or bacterial infections are cleared, for example. But in the long-term it can be harmful. The researchers found that higher indicators of inflammation were strongly linked to an Interleukin-6 increased risk of death, a connection that persisted regardless of whether or not an individual was taking ARVs. The inflammatory marker known as interleuken-6 (IL-6) had the most significant connection to mortality. Study author Judith Tsui, MD, MPH, an assistant professor of medicine at Boston University School of Medicine, says, “I was actually surprised that IL-6 was so strongly associated with death, even 10 years later, after such a long follow-up period, which I think speaks to the fact that it is an important marker of inflammation.”
(INTERLEUKIN-6) RAMIN HERATI; (FLAG AND MARIJUANA) THINKSTOCK
BIG PHARMA PLOTTED TO PROP UP SOUTH AFRICAN DRUG PATENTS A leaked email shows that the Innovative Pharmaceuticals Association of South Africa (IPASA) colluded with the U.S.-based pharmaceutical industry lobbying group PhRMA in an apparently successful plot to derail reforms to South Africa’s liberal patent laws. HIV advocates have sought these legal changes for years in hopes of bringing down costs for, and thus likely improving access to, antiretrovirals (ARV) for HIV in that hard-hit nation. IPASA reps ARV-producing companies such as Merck, Sanofi, Pfizer, Roche and Novartis. An email sent by Michael Azrak, the managing director of Merck Southern and East Africa and the head of IPASA’s intellectual property committee, indicated that IPASA, in consultation
with PhRMA, engaged consultancy group Public Affairs Engagement to influence the intellectual property reform process in South Africa. All this was in contrast to IPASA’s previous denials. Despite a media firestorm—which landed the affair with the moniker “Pharmagate”— the South African cabinet still did not bring the reform package to a vote before the May 7 national elections, leaving it in limbo for the near future. “We’re concerned the plots may have worked, that the government may have bowed to pressure,” says Lotti Rutter, a senior researcher at the Treatment Action Campaign in South Africa. IPASA’s actions, Rutter says, represent “just a shocking disregard for human life in South Africa.”
HALF-BAKED HEADLINES CLAIM THAT POT STOPS HIV Research showed that an ingredient in pot alters the disease progression of HIV’s simian cousin, SIV, in the guts of monkeys—findings that led to a rash of hyperbolic and highly inaccurate reporting in the popular press. Louisiana State University scientists gave twice-daily injections of THC, the main psychoactive element of marijuana, to four rhesus macaque monkeys while giving a placebo to four others over the course of 17 months. Then they infected the monkeys with SIV. Five months later, the gut tissue of the THC-treated monkeys had a higher level of CD8 memory T cells as well as a specific kind of CD4 cells that scientists believe are summoned to restore CD4s killed by the virus. There was also evidence of lowered inflammation in the gut. The study’s lead author, Patricia Molina, MD, PhD, a professor at the LSU Health Sciences Center in New Orleans, says that the findings identify how THC may affect certain mechanisms in the body and in turn alter the course of SIV disease—a cautiously limited, but nonetheless intriguingly promising conclusion at this stage in the game. In their colorful interpretation of the study, outlets such as ThinkProgress, The Huffington Post, Queerty, High Times and others outdid themselves by erroneously reporting that, as the Daily Beast put it, “Weed Could Block H.I.V.’s Spread. No, Seriously.” The Guardian Liberty Voice was the most creatively off base, touting, “HIV Infections Cured With Cannabis a Real Possibility.” In an email to POZ, Molina expressed her “frustration with the liberal, inaccurate and wrong approach that the journalists have taken to interpreting our results.”
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BY JENNIFER MORTON
Have You Been Tested?
LESS THAN A YEAR AGO
Hepatitis C is a leading cause of death among people living with HIV. It’s estimated that between 25 percent and 33 percent of all HIV-positive people in the United States are coinfected with hep C. Luckily newer drugs on the market have increased hepatitis C cure rates. Although all of the new drugs are not officially approved yet for those coinfected with HIV, these potentially game-changing meds are being studied in clinical trials and approval is expected in the near future. What’s more, other promising hep C drugs are in the research pipeline. Just like HIV, it’s important to get tested for the hepatitis C virus (HCV) and get connected to care. POZ asked you if you’ve been tested and/or treated for hep C. Here are your responses.
HAVE YOU EVER BEEN TESTED FOR HEPATITIS C?
TOP 3 REASONS FOR NOT STARTING HEP C TREATMENT: ✔ WAITING FOR NEW MEDICATIONS TO BECOME AVAILABLE ✔ I DON’T NEED TREATMENT YET ✔ WORRIED ABOUT SIDE EFFECTS
1 TO 5 YEARS AGO
HOW LONG AGO WERE YOU DIAGNOSED WITH HEPATITIS C?
FRIENDS AND FAMILY
HEPATITIS SUPPORT GROUPS
A NATIONAL OR LOCAL ORGANIZATION
WHO IS RESPONSIBLE FOR MANAGING YOUR HEPATITIS C?
SPECIALIST 11% GASTROENTEROLOGIST 15% HEPATOLOGIST 2% OTHER
MORE THAN 10 YEARS AGO
HEALTH CARE PROVIDER
17% PRIMARY CARE PHYSICIAN 55% INFECTIOUS DISEASE
6 TO 10 YEARS AGO
WHERE DO YOU GET YOUR HEPATITIS C INFORMATION?
MAGAZINES OR BOOKS
IF YOU HAVE HEP C, HAVE YOU EVER BEEN ON TREATMENT? I WAS NOTIFIED BY A PUBLIC HEALTH OFFICIAL THAT I MIGHT BE INFECTED
I ASKED TO BE TESTED
HEALTH CARE PROVIDER SUGGESTED IT
WHY DID YOU GET TESTED FOR HEPATITIS C?
FOR MORE INFO ON HEPATITIS, VISIT HEPMAG.COM Source: April/May 2011 POZ Survey
THE POZ SURVEY SAYS
(ALL IMAGES) THINKSTOCK
Genetically Tooled Antibodies Fight HIV
Engineering immune cells to produce what are known as broadly neutralizing antibodies (BNAs) protects against HIV infection in mice that have immune systems tooled to resemble those of humans. BNAs prevent infection by blocking the receptors HIV uses to latch onto human cells. About one in five people produce them in response to HIV, but usually do so too late to thwart a lifelong infection. The researchers in this study infected mice with a harmless virus, called a vector, that had been developed to deliver a genetic code to the animals’ immune cells, prompting them to produce BNAs over an extended period. The mice were then repeatedly exposed to HIV. One experiment was partially successful at preventing infection with a laboratory strain of HIV. In another, the researchers used a modified form of the vector and found that it was totally successful at preventing infection with a strain of HIV known to transmit heterosexually in humans.
Beneﬁt of Counseling With Computers A computerized counseling program for people with HIV improves treatment adherence and reduces viral load and risky sexual behavior. A Seattle study looked at a computer-based program called CARE+ that counseled study participants about treatment adherence, HIV disclosure, safer sex, condoms, substance abuse and the way that adherence affects viral load. After a nine-month period, there were various modest but significant differences between those who received the counseling and the control group who did not. The greatest benefits were found among those starting the study with a detectable virus, who were more likely to reach full suppression if they used CARE+. The counseling group’s adherence rate was 13 points higher than the control group on a scale of 0 to 100, while the control group appeared to dip slightly in adherence. The counseling group also appeared to nearly cut in half their number of risky sexual acts.
BY BENJAMIN RYAN
Long-living, HIV-infected immune cells that have stem-cell-like properties— meaning they self-renew and produce new cells— appear to be a bedrock of the viral reservoir that prevents antiretroviral (ARV) treatment from clearing the virus. Scientists examined blood samples taken from people newly infected with HIV and again after six to 10 years of treatment. Comparing the genetics of the T memory stem cells between the samples, they found no great difference in the viral sequences. This suggested that the otherwise fast-mutating virus remained in these cells without significant changes for years. Also, the amount of HIV DNA found in these cells remained essentially constant over time, regardless of HIV treatment’s success at depleting viral levels in other types of immune cells. In fact, in those taking ARVs the amount of HIV DNA was the highest in their T memory stem cells. The conclusion is that these cells can continuously produce new HIVinfected immune cells while dodging ARV treatment.
Teens and young adults with HIV often delay entering medical care for the virus until late in the course of their disease. Combing the records of nearly 1,500 HIV-positive 12- to 24-yearolds seen in clinics between 2002 and 2010, researchers found that 30 to 45 percent of them sought treatment after their CD4 levels had dropped below 350. Recent research has found manifold benefits to starting HIV therapy before crossing that threshold. This new study found that those entering care with lower CD4 counts tended to have higher viral loads, making them more likely to pass along the virus. Black youths were more than twice as likely as white ones to start care with low CD4s, and Latinos were 1.7-times as likely to do so as whites. Males were more likely than females to seek care late. And men infected heterosexually tended to enter care later than those infected through sex with men.
Memory Stem Cells: Reservoir Backbone?
Youths With HIV Enter Care Late
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TWENTY SURVIVORS SHARE THEIR STORIES. BY TIM MURPHY
T’S HARD TO OVERSTATE JUST HOW DEEPLY, WELL, weird POZ seemed when it debuted in 1994. A glossy, glamorous, well-written and beautifully designed magazine… about people with HIV/AIDS? Though public sentiment on the disease had softened a lot by 1994—with the emergence of the ﬁlm Philadelphia, of the openly gay and HIV-positive heartthrob Pedro Zamora on MTV’s The Real World, and the ubiquity of the red AIDS ribbon at the Oscars and everywhere else—most people still thought of folks with HIV/AIDS as sad victims, hobbling toward a certain death. Then suddenly here was a magazine that not only showed HIV-positive people being funny, sarcastic, glamorous, sexy, angry and purposeful, but also talked about HIV treatments (pharmaceutical and otherwise) as casually as, say, Cosmopolitan advised women on how to have a better orgasm. The public reaction was, to say the least, rather astonishing. As POZ founder Sean Strub recounts in his recently published memoir Body Counts: “Frank Rich, in his New York Times column, said POZ was ‘easily as plush as Vanity Fair’ and ‘against all odds, the only new magazine of the year that leaves me looking forward to the next issue.’” Not a bad note to start on, eh? Since then, and over nearly 200 covers, POZ did something else: We charted the byways of the epidemic as it wended its way through the various (and often vulnerable and oppressed) communities affected by HIV/AIDS in the United States and around the world: gay and bisexual men, intravenous drug users, people with hemophilia, sex workers, African Americans and other people of color, prisoners, transgender people, etc. These individuals and communities were not
only HIV’s targets but also its ﬁercest ﬁghters. The faces that have honored our covers help chart a map of the epidemic as it has evolved over the past 20 years, from a terror with few viable treatment options and a near-certain death sentence attached, to something survivable for people in parts of the world with access to treatment and care, to something that stubbornly will not go away—especially in particularly susceptible communities, such as gay and bisexual men of color. We now have many tools to halt both AIDS-related deaths and new HIV cases worldwide. The question remains: Will we effectively use these tools to eradicate HIV? Until then, POZ will continue to cover the HIV epidemic until hopefully we achieve our own obsolescence. On our 20th anniversary, we take a look back at 20 of the extraordinary HIV-positive people from many different walks of life, who lit a pathway toward survival, inspiration and even joy for POZ readers. We salute them and the many others who have graced our covers (including those we lost too soon). And here’s to you, our POZ readers. Your stories continue to reﬂect the diverse tales of the epidemic.
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Bill T. Jones “YOU KNOW, THERE MUST BE SO many people in the dance world who are HIV positive, yet so few of them have come forward and talked about it publicly, openly.… Oftentimes I am uncomfortable being so alone.” So began an interview with the legendary New York–based choreographer Bill T. Jones, our second cover subject, six years after his lover and dance partner Arnie Zane had died of AIDS-related complications and the same year he would receive acclaim (and some critical derision) for his landmark Still/Here performance piece on living with chronic illness. Twenty years later, Jones, 62, is in good health and has since won Tony Awards for his choreographic work for Spring Awakening and Fela! Today, he doesn’t feel so alone as a gay black man living with HIV. “That’s not the ﬁ rst thing a writer says about me anymore, and I really appreciate that,” he says. Today, when he’s not running New York Live Arts, the nonproﬁt he merged with his own dance company in 2010, he’s creating a new dance piece, Analogy, due to premiere in June 2015, and he’s got at least another Broadway-friendly project in the making. He lives in the Hudson Valley with his longtime partner, the French sculptor Bjorn Amelan. “It dismays me that I still meet young men of color who’ve just seroconverted,” he says. “All I can do is embrace them and tell them, ‘Enough with regrets and beating yourself up. Now stay well and do something proactive, because you’re not deﬁ ned by your illness.’”
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THE RICH, BLONDcoiffed daughter of a major conservative fundraiser, as well as a wife and mother, Mary Fisher shocked and moved an otherwise reactionary 1992 Republican National Committee crowd when she disclosed her HIV-positive status at the podium, entreating Republicans to provide more compassion—and funding—for the then-raging epidemic. “Though I am female and contracted this disease in marriage, and enjoy the warm support of my family, I am one with the lonely gay man sheltering a ﬂ ickering candle from the cold wind of his family’s rejection,” she told the crowd. “People with AIDS have not entered some alien state of being. They are human. They have not earned cruelty, and they do not deserve meanness.” Two years later, New York Times writer Maureen Dowd visited Fisher’s sprawling suburban home outside Washington, DC, for POZ, ﬁnding a gracious woman who’d started a national AIDS support group, published a memoir and crisscrossed the country speaking to schools about HIV/AIDS. Today, having survived not only decades of HIV but also breast cancer, Fisher, 66, lives in Sedona, Arizona, where she makes art and contributes to causes, such as “100 Good Deeds,” to help poor women around the world. (Read more about her work at maryﬁsher.com.) “I plan to live long and well, trying to make a difference and remembering that if I care for others, I’ll never need worry,” she said. “Everything else will take care of itself.”
(JONES) GETTY IMAGES/AFP/BORIS HORVAT; (FISHER) COURTESY OF MARY FISHER
Larry Kramer r
DECEMBER 1994// / JANUARY 1995
(TIGER) COURTESY OF LISA TIGER; (KRAMER) GETTY IMAGES/LARRY BUSACCA
Lisa Tiger IN HER MOVING COVER story, Lisa Tiger, then 29, talked about growing up Cherokee Indian in Oklahoma, dropping out of college in 1992 when she learned she was HIV positive and being tapped by Cherokee leader Wilma Mankiller to become a national speaker on HIV prevention and overall wellness among American Indians—a community that has high rates of substance use. “People listen to me because I’m a Native American when they wouldn’t listen to the same story from a white woman,” she told POZ. Twenty years later, Tiger now lives in Santa Fe, New Mexico, with her beloved 9-year-old daughter, Taladu, whose name means “cricket” in Cherokee. She’s still close with Taladu’s dad, her ex-husband, who lives nearby and helps raise their daughter. She’s back in school ﬁ nishing her bachelor’s degree in ﬁlm, and though her HIV is in check, she’s fought Parkinson’s disease the past 15 years. In addition, her adopted daughter, Shelleigh, was murdered by her boyfriend in 2007, on the same day Tiger’s father was murdered 40 years before. “Life has humbled me since that article in POZ,” she says. “I’m broken, but I’m kinder. Back then, I couldn’t forgive the guy who gave me HIV without telling me he had it.” She says she’s since forgiven him, as well as many others. “You have to let go of resentments,” she says. “It’s better for you.”
IN 1995—14 YEARS AFTER HE co-founded GMHC, 10 years after he debuted his searing AIDS stage drama The Normal Heart, and eight years after he sparked the transformative activist group ACT UP with a single enraged speech—Larry Kramer graced the cover of POZ. It was a crackling conversation with his fellow HIV-positive luminary Andrew Sullivan about AIDS activism in the era of President Bill Clinton, complacency about HIV among gay people, the pros and cons of the early AIDS drug AZT, and even the existence of an afterlife. “I certainly think Donna Shalala is evil,” Kramer then said of Clinton’s health czar, whom he accused along with Clinton of doing too little on AIDS. “Evil, evil, evil.” The ﬁery godfather of activism has appeared on our cover three other times (in 1997, 1999 and 2007) and famously received a new liver in 2001 to replace one ravaged by hepatitis B. Today, Kramer lives in Connecticut with architect David Webster, his partner of 20 years whom he married in the I.C.U. while recovering from surgery last July. Director Ryan Murphy’s HBO adaptation of The Normal Heart, starring Mark Ruffalo and Julia Roberts, debuted in May. The American People, a giant historical novel Kramer has been working on for years, y will come out later this year, according to a colleague of Webster’s. Kramer, 78, is currently in poor health and was unable to chat with us for this follow-up. But when we saw Kramer at an ACT UP reunion in New York last summer, he was asked what he wanted to say to those assembled, whom he called “my children.” He simply answered, “I love you.”
“LARRY KRAMER HAS been very effective as an activist and has done many wonderful things for people with HIV and AIDS. But I decide what my role will be, not anyone else.” So said 36-year-old LA Lakers legend Magic Johnson in 1996, who’d returned to his basketball team for a ﬁ nal stint on the court, when POZ told him that Kramer and other HIV activists were dismayed he’d not done more to ﬁght the epidemic since his history-making 1991 announcement of having HIV. After retiring as an NBA player, Johnson, 54, has become a super-savvy multimillion-dollar entrepreneur, investing in everything from movie theaters and Starbucks in low-income urban areas to, just a few months ago, the WNBA’s LA Sparks team. But he also has continued his advocacy and has raised money for HIV/AIDS causes via his Magic Johnson Foundation. He also hasn’t shied away from clearing up HIV myths in the black community, such as that he was “cured” of HIV or that he remained healthy through exotic foreign treatments, as opposed to standard HIV meds. Today, Johnson is still advocating the beneﬁts of antiretroviral therapy and the need for individualized treatment. “The virus acts different in every body,” he said on a recent radio show. “Just because I’m doing well, you might not do well.” In other news, he and his wife Cookie have shown public love and support for E.J., their 21-year-old gay son, a New York University student and emerging fashionista. THE YEAR 1997 WAS A BIG ONE FOR LONGTIME POZ COLUMnist and blogger Shawn Decker. Born with hemophilia and diagnosed with HIV (which he got through infected clotting factor) in 1987 when he was 11, Decker experienced an otherwise normal Virginia boyhood—although one that had been cloaked in HIV secrecy. But in 1997, he started his My Pet Virus website, a humorous, goofy and educational online chronicle of his young suburban hetero life with HIV. Soon enough, he was writing a regular column for POZ called “Positoid,” which made him one of the nation’s funniest openly HIV-positive people. Seventeen years later, Decker, 38 and still a Virginian, is doing great. In 2000, he married Gwenn Barringer, a fellow HIV-negative AIDS educator, and the two have run a sero-diverse HIV education road show ever since, blogging jointly at shawnandgwenn.com. In 2006, the couple appeared on our cover together when he published his memoir version of My Pet Virus, which he is now turning into a screenplay. The couple, who just last year graced our cover again for our “Negative” special issue, has two nieces and a goddaughter they adore. “I want to maintain and improve my health as I head into my 40s,” Decker says. “I want to be in the best shape possible when cures for both HIV and hemophilia come down the pipeline so I can really enjoy my ﬁ nal years.”
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DECEMBER 1996/ JANUARY 1997
Shawn S Decker 36 POZ JUNE 2014 poz.com
(JOHNSON) GETTY IMAGES/EARL GIBSON III; (DECKER) COURTESY OF SHAWN DECKER
(BROADBENT) COURTESY OF HYDEIA BROADBENT; (HARRINGTON) COURTESY OF MARK HARRINGTON
ONE OF POZ’S SUNNIEST covers featured 13-year-old Hydeia Broadbent, who’d become a media sensation as the little girl born with HIV and adopted by parents in Las Vegas. By 1997, she’d survived several near-death illnesses, was in good health on one of the new HIV combos and was crisscrossing the nation as a sassy, singing-and-dancing, one-woman HIV education tour de force. (She was even on Oprah.) Seventeen years later, Broadbent, who celebrates her 30th birthday in June, has gone on with her own show. Still based in Vegas, where she lives with her HIV-positive sister, Patricia, she continues to travel and speak before audiences on the modern-day realities of HIV, and she’s a spokesperson for the “Until There’s a Cure” campaign. Not that she didn’t need to take some time out of the spotlight: “The public turned me into a celebrity, which at times was too much to bear,” she conﬁdes today. “The time came when I had to ﬁgure out who Hydeia was.” Eventually she was ready to return to the public eye; recently she reconnected with Oprah to discuss the challenges of dating with HIV (a guy she liked was too ashamed to be seen with her) and her dreams of starting her own nonproﬁt and community center. “I have a lot of plans, too many to name,” she tells us. “So just keep an eye out for your girl.” You can do just that at hydeiabroadbent.com.
“WHY DO A DEMO WHEN YOU can do a phone call?” That’s what New Yorker and HIV-positive treatment activist Mark Harrington told POZ in 1998, explaining why he and a few other scientiﬁcally minded colleagues had broken away from the street-ﬁghting ACT UP and started their own elite research club, Treatment Action Group (TAG). The new group redesigned HIV drug trials alongside honchos from the Clinton administration and earned Harrington in 1997 a $240,000 MacArthur Foundation “genius” grant. At that time, the AIDS death rate in the United States had just plunged by 67 percent because of the new protease inhibitors—“it was a period of great excitement,” he recalls today—even as ever more patients were developing resistance to them. Shortly after that, Harrington would expand his work to address the growing global AIDS pandemic, which was interacting with such diseases as tuberculosis and malaria. Fifteen years later, TAG is still going strong, focusing on matters local (teaming up with a newly resurgent ACT UP New York to demand an end to AIDS in the state), national (scaling up use of pre-exposure prophylaxis, or PrEP) and global (making sure that the forthcoming all-oral hepatitis C drugs are available worldwide, as well as expanding access to treatment for tuberculosis). Harrington, 54, demurs talking about his personal life. “Trying to ﬁ nd a life-work balance has always been a complex issue,” he says. But he freely admits, “I’ve been blessed with a healthy family, wonderful friends, brilliant colleagues, good health and challenging work.”
Monica Johnson WHEN POZ VISITED MONICA Johnson in rural Columbia, Louisiana, she’d already been through a lot—HIV positive since 1985, still mourning the 1993 death of her beloved baby boy Vaurice, who’d been born with HIV, and dealing with local AIDSphobia so severe that she was pulled off her substitute-teaching position and relegated to a back ofﬁce. But to her joy, she also was undetectable on combo therapy and happily raising her sister’s son, Avery. “People were so ignorant,” she recalls. “You couldn’t talk about HIV/AIDS publicly anywhere.” Johnson moved that needle when she founded her own AIDS agency, HEROES, which she still runs today, though she laments that budget cuts have weakened it. She’s also served on the National Minority AIDS Council board of directors and has been featured in the acclaimed documentary deepsouth, about the paucity of HIV resources and funding in states like Louisiana. “Sometimes I feel as if I live in a developing country when I compare the services in other parts of the United States to what we have in Louisiana,” says Johnson, 49. That’s why she’s sticking with HIV advocacy even though she’s suffered burnout. “After prayer and reﬂection, I decided I couldn’t abandon it.” A point of joy? She recently watched Avery graduate high school and go on to college. Now she’s ready to write a memoir—and to start running marathons! “My faith has held me together,” she says.
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PERHAPS POZ’S MOST SENSAtional and controversial cover featured the young, HIV-positive gay activist, sex worker and porn star Tony Valenzuela naked astride a saddle-free horse, two years after he’d confessed before a crowd at a San Diego LGBT political conference that he cherished condomless sex. “The level of erotic charge and intimacy I feel when a man comes inside me is transformational,” he’d said, stressing he was speaking only for himself, not advocating barebacking for all. Nonetheless, the room exploded with angry declarations that Valenzuela was setting back the safersex movement. The blowback blacklisted him in San Diego, so he moved to Los Angeles, where he got his MFA in creative writing and became the head of the Lambda Literary Foundation, an LGBT writer’s organization. “A lot of HIV clinics wouldn’t carry that month’s issue of POZ,” he recalls. “But that cover also served as a turning o point. The topic of barebacking was out in the open, and p we created some space for gay men to speak honestly about w their desires.” Valenzuela, 45, still lives in Los Angeles with th husband Rob Ferrante and their two pit bulls, Scarlett and h Chauncey. He’s working on a memoir about his barebacking brouhaha. “A lot has improved for us” since the late ’90s, he says. “But I also think HIV-positive gay men have no agency. Our lives tend to be demonized or framed as victims in media and by public health. We still need to assert our stories on our terms, our bodies on our terms.”
(JOHNSON) COURTESY OF MONICA JOHNSON; (VALENZUELA) COURTESY OF TONY VALENZUELA
WHEN POZ CAUGHT UP WITH OLYMPIC DIVING LEGEND Greg Louganis at his Malibu home in 1999, it was 11 years after he shockingly slammed his head on the diving board at the 1988 Olympics and ﬁve years after he released Breaking the Surface, his bestselling memoir in which he came out MARCH 1999 as both gay and as HIV positive. He was no longer in the Olympic mix, but his health was holding steady on protease inhibitors and he’d found a new passion—raising dogs, such as his Jack Russell terrier, Nipper, who posed with him on the cover. Fifteen years later, Louganis, 54, is still as active as ever, having hosted Splash, a celebrity diving reality show, and, last fall, having married handsome paralegal Johnny Chaillot in a Malibu wedding attended by celebs like Barbara Eden and fellow Olympian Nadia Comaneci. He still loves dogs—his latest is Dobby, Nipper’s son. He says he’s been lucky to live all these years with HIV. “When I talk to colleges and young people about HIV prevvention, I tell them we’re in a different day and age now,” he ssays, “but that if they can avoid HIV, they’re better off. I’ve been p positive for 26 years now, I’ve been on nearly every med, and I w wouldn’t wish my drug regimen on anyone.”
NEW YORKER RUBEN RODRIJUNE 2001 guez, diagnosed with HIV in 1994 but likely positive years before that, was already a longtime survivor when he shared the cover of POZ with Anthony Salandra and Marsha Burnett, two other HIV veterans who’ve both since died. That summer before 9/11, he was working as the hotline supervisor at the Osborne Foundation’s AIDS in Prison Project, after himself being paroled in 1996 after 15 years in state prisons, where he not only kicked drugs but also started groundbreaking programs for HIV-positive prisoners. “People aren’t nearly as afraid of AIDS as when we started,” he told POZ back then. “Prisoners coming together to help each other forged a sense of community.” Thirteen years after his POZ cover, Rodriguez, 63, is working as a life skills coordinator at New York’s Fortune Society, which helps parolees re-enter society. “I still live with my signiﬁcant other, my T cells are at about 440, I’m undetectable, and life continues to move along,” he reports. He loves his job. He’s also a cancer survivor. “Look,” he says with his characteristic Brooklyn no-B.S. style, “I’ve survived more than 25 years in and out of prison, drug addiction, HIV/AIDS, lymphoma, prostate cancer, living with hepatitis C, and all that life has thrown at me. I’m a blessed man.”
(LOUGANIS) GETTY IMAGES/ARAYA DIAZ; (RODRIGUEZ) BILL WADMAN
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WHEN FIERCE PHILADELPHIAN Waheedah Shabazz-El appeared on POZ’s cover, four years had NOVEMBER 2008 passed since she learned she was HIV positive while serving a six-month stint in prison for a drug bust. After that stint, in addition to getting clean from drugs, this proud progressive Muslim grandma took up advocacy for HIV-positive prisoners with a vengeance, working with the Philly activist group Philadelphia FIGHT, where she is employed today, and becoming a founding member of the national Positive W Women’s Network USA, for which she is n now regional organizing coordinator. She also played a major role in re-legaliziing condoms in Philly jails. “I realize that I h have been reborn and re-created again and aagain,” she says today. Currently on her agenda? Fighting laws that criminalize HIV-positive people for having sex, even when their virus is undetectable and virtually untransmissible. “Those laws undermine an environment where people will come forward to be tested and treated,” she says. Otherwise, post-prison life for Shabazz-El is sunny. “I’m happy, secure and in a healthy marriage with a wonderful man who’s also an activist. We recently purchased a home, and I enjoy being a sexy wife and grandmother as much as I enjoy being a public ﬁgure in the community.” JUST OVER A YEAR AFTER APPEARING ON THE cover for our feature story showing that stable DECEMBER 2008 housing reduces both HIV rates and HIV-related illness, Charles King, the HIV-positive cofounder of Housing Works, cut off his signature ponytail in an event that raised $15,000 for relief in Haiti after its devastating 2010 earthquake. Since the demise of his long locks, King, 59, has been busy as usual, both globally (after Haiti’s earthquake, Housing Works opened a small ofﬁce there to help ﬁght the country’s poverty and its AIDS crisis) and locally (the agency is working closely alongside New York ofﬁcials and other activists to help bring both AIDS deaths and new HIV cases to zero in the state by 2020). A recent victory occurred when New York City ﬁ nally capped rent for poor folks living with HIV at 30 percent of their income—something Housing Works had long been agitating for. On the personal front, King also is an adoptive daddy of sorts now, helping to raise two teenage boys, with another one—the son of Jobanny Ramirez, King’s Dominican partner of seven years—likely on the way into his household. “I have to cook a lot on the weekends, so there’s always food in the fridge,” he says. But he continues to keep his eyes on the ﬁght. “With the advent of [post-exposure prophylaxis (PEP), pre-exposure prophylaxis (PrEP) and treatment as prevention (TasP)], it is clear that we can end the epidemic,” King says. “We need to be demanding this more loudly than ever.”
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(SHABAZZ-EL) TARA LASSARD; (KING) COURTESY OF HOUSING WORKS/JULIE TURKEWITZ
Timothy Ray Brown n
(WILSON) COURTESY OF PHILL WILSON; (BROWN) SCOTT TABER
Phill Wilson PHILL WILSON has lived with HIV since 1980, and in 1999 he founded the Black AIDS Institute in Los Angeles to ﬁght the epidemic among African Americans. Shortly before he appeared on POZ’s cover, he played a key role in launching Greater Than AIDS, a social media campaign to empower the black community to unite and ﬁght the disease. “My ﬁ rst priority…is to develop messages that resonate with black folks,” he told POZ. “When 50 percent of all new HIV cases in this country are in black communities, when 50 percent of the 1.1 million people estimated to be living with HIV in America are black and when 50 percent of all AIDS-related deaths in the United States are black, I don’t think there’s any room to debate that AIDS in America is a black disease.” Since then, not surprisingly, Wilson, 57, has been busy. He had a hand in making sure that the XIX International AIDS Conference in Washington, DC, in 2012 included “an unprecedented number of black keynote speakers,” he notes, and the Black AIDS Institute has been a major force in urging blacks to sign up for Obamacare by stressing that health care coverage helps people prevent, diagnose and treat HIV. His goals going forward? “To meet the promise of achieving an AIDS-free generation,” he says. “My goal is to proudly be able to close the doors of the Black AIDS Institute because our job will be done.”
WHEN POZ CHATTED WITH Timothy Ray Brown for our cover story, ﬁve years had passed since German doctors had famously managed to cure his HIV by reinfusing him with immune cells that have an HIV-resisting mutation, which was part of his successful treatment for leukemia. Brown, a gay American who had been living with HIV in Berlin for a decade before his 2006 leukemia diagnosis, became a one-man proof of the concept that HIV could be cured if pre-existing virus could be scoured from the body and if the immune system could also be programmed to block new HIV from replicating. “It’s really great,” said the mild-mannered Brown. “I hope what I’ve gone through will help lots of people.” Three years later, even as new scientiﬁc challenges to a cure have emerged, Brown himself is doing well, living between San Francisco and Las Vegas with his new boyfriend, working again as a German-English translator and putting muscle back on at the gym. He remains free of both HIV and leukemia. He also started, in 2012, the Timothy Ray Brown Foundation, to promote cure research. And last June in his hometown of Seattle, he launched “The Cure Tour” with the Fred Hutch Cancer Research Center. “I visit cities around the world and host a cure scientiﬁc symposium,” he explains. “The goal is to spread the word that a cure is possible, and to gain global support to fund cure research around the world.” When he’s not advocating for a cure, he stays busy doing Tuesday-night movie dates with his boyfriend and sticking to a vegetarian diet, “which when I have the urge to eat fast food is really hard.”
IN OUR FEATURE STORY on young people who were either born with HIV or got it in their teens or early 20s, Philadelphian Lafayette Sanders, then 24, told the story of losing his mom to HIV at 13, keeping his own perinatally infected status a secret for years at his grandma’s urging, suffering stress and rage, then ﬁ nally ﬁ nding solace when he came out with his status publicly and became a sexual-health advocate for young people. Three years later, Sanders is still advocating. A teen sexualhealth video documentary he took part in landed him a spot touring with BET’s Rap-Up tour. Living with his girlfriend, he does visual merchandising at J. Crew while working on his own fashion line, Kustoms By L.K. He’s got big personal plans for the future: “to remain happy and healthy, to take care of my family, to get engaged, travel, get married, have healthy kids.” But he’s also committed to ending the epidemic. “We still have plenty of work to get done,” he says. “Information still isn’t reaching the young on an efﬁcient scale. I want to break the cycle of my parents and break down the walls of stigma attached to HIV. If someone really gives me the platform,” he promises, “I’ll change it!”
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(SANDERS) COURTESY OF LAFAYETTE SANDERS; (CHUNG) COURTESY OF CECILIA CHUNG
“THE CHANGE FOR ME from being male to coming to my womanhood was a very painful journey,” HIV-positive transgender San Franciscan Cecilia Chung told POZ in our feature story on research linking trauma and HIV among women and transgender women, and on programs to help them heal wounds from their past. Chung recounted being rejected by her family and losing her job as a court interpreter when she transitioned to womanhood in the ’90s, and how those blows led to her using drugs and becoming HIV positive. That’s all behind her now. Today, Chung, 48, is one of San Francisco’s seven volunteer health commissioners and is also a senior strategist at the city’s Transgender Law Center. She helped implement an HIV testing program for area transgender youth, plus she was elected president of the U.S. People Living with HIV Caucus and named by President Obama to the Presidential Advisory Council on HIV/AIDS. “I like to keep busy,” jokes Chung, who in her downtime likes to get foot massages with her boyfriend. Mostly, though, she’s passionate about creating a national network of HIV-positive transgender women. “It’s time for that,” she says. “Our voices are still kind of invisible, so we need to get more trans women with HIV to step into the advocacy role.”
(ROGERS) COURTESY OF JAMAR ROGERS; (STRUB) BILL WADMAN
“I WAS ABLE TO SPEAK MY truth with no shame.” That’s how Jamar Rogers remembers feeling about being on POZ’s cover last year linked to a story on HIV-positive people ﬁghting addiction. Rogers had already spoken his truth the year before, when, as a contestant on the hit singing show The Voice, he’d come out as HIV positive and a recovering crystal meth addict. He parlayed the fame not only into his singing career, but also into the speaking circuit, sharing his empowering comeback story. A year later, Rogers, 32, says he’s staying clean through “a lot of volunteer work with churches, youth groups and HIV organizations.” Last year, he got signed to Tommy Boy records and toured South Africa; he also was sick with tuberculosis for ﬁve months. No wonder his next album is called Lazarus. And guess what else? “I’m engaged to an HIV-negative woman who has decided to love and support me,” he reports. But in addition to wedding plans, he’s still speaking out about HIV. “We still have such a long way to go,” he says. “The black community is still taking the brunt, and I believe it’s because we have no self-identity. If we valued and loved ourselves a little more, maybe we’d get tested regularly. Perhaps we’d actually take a stand for ourselves and our loved ones.”
ONE OF OUR MOST RECENT cover boys also happens to be our magazine’s founder, Sean Strub, an LGBT rights fundraiser and ACT UP alum who was nearly dead from AIDS-related complications in 1994 when he launched POZ. To ﬁnance this bold leap of faith, Strub used $345,000 he got from selling his life insurance to a viatical company, one of those pre-protease ventures that bet ﬁnancially on the impending deaths of people with HIV/AIDS. “We tried to tell the story of the epidemic in all its complexities, through the experience of those with HIV,” recalls Strub of POZ’s mission. “And we would do so in an attractive, engaging and hopeful format— on glossy paper.” That quote is from Body Counts, Strub’s recently published memoir of 35 years of being an LGBT and HIV/AIDS activist, which The Washington Post said “has the suspense and horror of Paul Monette’s memoir Borrowed Time and the drama of Kramer’s play The Normal Heart.” Not surprisingly, Strub, 55, who sold POZ in 2004, has been traveling the country promoting the book and meeting with positive folks in all corners of the United States. He also founded the Sero Project, which ﬁghts to repeal laws that criminalize HIVpositive people for having sex, even when they’re undetectable and use condoms and no virus is transmitted. “It’s moving when people tell me how the book overlaps with their own stories,” he says. “And, of course, I hear from people all the time how much POZ has meant to them, and that makes me very proud.”
BY ORIOL R. GUTIERREZ JR.
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“Brenda” by Barton Lidice Beneš, cremation ashes of Brenda Woods, 1993
COURTESY OF VISUAL AIDS/BARTON LIDICE BENEŠ
Flesh and Blood Twenty years, two decades, a score or even a generation—call it what you like, but for me reﬂecting on such a length of time feels like the end of an act in a play. Intermission. Time to get some air before the curtain goes up again. As POZ marks 20 years of service to people with HIV/AIDS and our allies, I know how proud our entire staff is to be a part of telling the ongoing story of the epidemic. We will continue being a mirror for the HIV/AIDS community. Reflecting back on what we see isn’t always easy because people living with HIV are a diverse bunch. We have a virus in common, but it often feels to many of us that HIV is all that we share. However, if that were true, POZ wouldn’t still exist. As someone living with HIV for more than two decades, I believe the fact that we share this virus also means we share in the related stigma, discrimination and criminalization. Thankfully, we also share in the beneﬁts of overcoming such foes. Effective treatment has changed the image of the virus from a certain death sentence to a chronic condition. We all share in the comfort of knowing that effective treatment can now lead to a virtually normal life span. For all of the hope that we rightfully share, we also share in the grief and loss that come from HIV/AIDS, which cannot —and can never—be swept neatly away. Too many souls were claimed too early by this virus. We must never forget them. In this issue, we celebrate the survival of 20 people who have graced our cover. Doing so was an act of deﬁance, if it was anything. So many of our former cover guys and gals have passed away, as well as many more from within our covers. To the countless faces I never knew across the country and around the world, may you rest in peace. To the many faces who graced the pages of POZ these past two decades, may you also rest in peace. I would be remiss, however, if I didn’t take this opportunity to put actual names down on paper to underscore the fact that those we’ve lost to this virus were once ﬂesh and blood. To Anthony, I say that I’m sorry we never gave you what you needed most. To Manny, I say that I’m sorry I didn’t get to say goodbye. To Rafael, I say thank you for being a role model for me at a time when I had few. And to Michael, I say that I understand now and I forgive you.
Have you ever revealed your HIV status on a social networking site?
❑ Yes 8
Do you share HIV/AIDS-related information through your online social networks?
❑ Yes 9
SOCIAL NETWORKS According to a recent Nielsen study, Americans spend almost 25 percent of their time on social networks and blog sites. POZ wants to know about your online habits and how you use social media.
Do you follow POZ on any of the following social networking sites? (Check all that apply.)
❑ Facebook ❑ Google+ ❑ Twitter ❑ YouTube 4
❑ 1–2 hours ❑ 3-4 hours ❑ 5 hours or more
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❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other
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On average, how much time do you spend each day on social networking sites?
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❑ I read POZ magazine (print) ❑ I visit POZ.com (online) ❑ Both print and online 15
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❑ No (skip to question 14)
❑ Facebook ❑ Google+ ❑ Instagram ❑ LinkedIn ❑ Myspace ❑ None of the above
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Do you share information from POZ through your online social networks?
❑ Yes 10
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Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #196, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424