M.A.C. Goes Gaga / 30 Voices From 30 Years of AIDS / Fred Hersch’s Coma Dreams
H E A L T H + S P I R I T + C U L T U R E + L I F E
ANNIE
LENNOX
Three years into her SING Campaign for women and children, the iconic musician talks about the event that changed her life forever.
MAY/JUNE 2011 www.hivplusmag.com
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500
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500 T-CELLS
OR LESS. IT’S TIME
TO TAKE ACTION. Talk with your doctor and consider all the factors about starting treatment. HIV treatment is now recommended for everyone with a T-cell count of 500 or less and should be considered when T-cells are higher than 500, according to the DHHS* and the IAS-USA†. Starting treatment early may help protect your immune system and vital organs. Today’s medicines may have fewer, more manageable side effects. They may help you live a longer, healthier life. Receive helpful information about living with HIV that you should know. Call toll free 1-888-451-5723, or visit TREATHIVNOW.COM. *DHHS = Department of Health and Human Services †IAS-USA = International AIDS Society USA. ©2011 Gilead Sciences, Inc. All rights reserved. UN7542 03/11
TABLE OF CONTENTS MAY / JUNE 2011
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4 ART IMITATES LIFE Jazz pianist Fred Hersch turns an eightweek coma into a work of art.
6 TELLING 1,000 WORDS A health researcher helps HIV-positive women tell their stories in pictures.
6 BAN BY THE BAY A proposed ban on circumcision prompts questions about the procedure’s effect on HIV.
7 NECESSARY ROUGHNESS? Can certain lubricants increase the chance of HIV transmission?
H-EYE-V 8 THINK WISE Graeme Smith of the South African national cricket team practices with children affected by HIV.
HAART BEATS
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34 RACE TO THE START? A trial is under way to determine the right time for HIVers to begin medication.
36 SWAPPING OUT A MICROSCOPE FOR MATH Mathematical theories converge to help make meds more effective.
CLOCK WISE FROM TOP: GE T T Y IMAGES, NICK KNIGHT FOR M.A.C.’S VIVA GLAM CAMPAIGN, GE T T Y IMAGES
36 OLD DRUG, NEW TRICKS A decades-old drug therapy for alcoholism may help eradicate latent HIV.
37 GIMME A D Shaking up your antiretroviral treatment may up your vitamin D levels.
16 ANNIE LENNOX
COLUMNS
The iconic musician isn’t just speaking out about the need to improve the lives of women and children with HIV/AIDS, she’s singing about it!
38 MIND + MOOD
20 30 VOICES FROM THE PAST 30 YEARS As AIDS enters its fourth decade, we revisit the people who have fought the disease since day one.
32 LOOKING GOOD, DOING GOOD With Lady Gaga as its spokeswoman, M.A.C. cosmetics hopes to set records for AIDS fund-raising this year.
If you find yourself fixating on slights and mistakes, here’s how to move past it.
40 LIVING THE QUESTIONS Tyler Helms considers the ramifications of a long-sought cure.
ALSO 42 ASK & TELL: La Toya Jackson COVER: Photographed by Michael Becker/Getty Images
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Annie Through the Years Check out photos of Annie Lennox throughout her many years of dedicated service to HIV education, prevention, and advancements.
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Art Imitates Life
JOHN ROGERS
Jazz pianist Fred Hersch not only survived AIDS-related dementia and an eight-week coma, he turned the experience into a work of art fred hersch, who has performed on over 100 recordings and is considered by many music lovers to be the finest jazz pianist of his generation, has managed to turn life’s lemons into some glorious lemonade with his ambitious new multimedia work, My Coma Dreams. Three years ago, Hersch was fighting for his life following severe AIDS complications. He spent 10 days in early 2008 in the hospital, followed by what he calls “two months of being completely psychotic and paranoid.” By March things were looking up—he was eating regularly and gaining weight back. Then came an almost-too-late diagnosis of pneumonia. By the time Hersch was admitted to the hospital, he had septic shock and his kidneys had shut down. Hersch essentially spent the next two months in a coma, and when he came out he found himself unable to talk, eat, or walk. The future of his career was uncertain. Doctors weren’t sure he’d ever be able to play the piano again, but Hersch’s determination to resume playing and composing music was unshakable. “My hands went through lots of phases of being swollen, being stiff, being weak, being painful,” he says, “but I just fully assumed I was going to get back on the horse.” While rehabilitating, he kept having vivid memories from his coma. Even though Hersch says he doesn’t normally remember dreams, the sleep narratives were never far from his mind during his months of rigorous physical therapy. “They were very specific: colors, smells, textures, sounds, people in my life. I thought, I should do some kind of music piece with this.” Hersch committed the memories to paper and enlisted the help of a collabora-
tor—writer and director Herschel Garfein, who’s best known for his operatic adaptation of Elmer Gantry. Together they created My Coma Dreams, a performance piece that features 11 instrumentalists and what Hersch calls some “very intense animation and video imagery” that delves into the composer’s sleep fantasies while exploring the traumatic reality that brought them on. “It’s what they call a ‘festival piece,’ ” Hersch says. “There’s too much music for to be classified as a theater piece, and too much theater for it to be a musical piece.” An actor-singer grounds the show in reality by charting Hersch’s illness through the composer’s own words and the words of those close to him while the music and visuals express the dreams. All of the various pieces intersect in unpredictable ways. Some of the dreams are terrifying; others are surreal or lyrical. Fans of Hersch will be surprised by the expansive sound of My Coma Dreams. “It’s not a jazz piece per se,” he says. “It’s a mix of musical languages. Stylistically, I did not limit myself to what I was going to write and in what style. I just let the dreams take me where they wanted to go.” Hersch attributes much of his amazing recovery—he says he’s now able to play the piano “as well as or better than ever”—to his partner, Scott Morgan. With My Coma Dreams scheduled to premiere May 7 at Montclair State University in New Jersey, and a viral load that is currently undetectable, Fred’s wish is that his quarter-century experience as an AIDS survivor can bring people hope. “When I was diagnosed, I was not yet 30,” he says, “and I never thought I’d be 40. Now I’m 55, and I’m thinking 60 is a no-brainer.” ✜
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Ban by the Bay
Telling 1,000 Words A health researcher helps HIV-positive women tell their stories in pictures pictures of a refrigerator, a pile of garbage, and a profi le in shadow—these images are part of a new project that allows HIV-positive women to document their lives, express themselves, and call for change through photos. Last year, when Michelle Teti was working as an assistant research professor at Philadelphia’s Drexel University, she initiated the effort by giving digital cameras to 10 HIV-positive women. Now at the University of Missouri, Teti brought the project to St. Louis this spring. The idea of women photographing their own lives initially came to her after she got involved with more traditional HIV programs. “I was helping HIV-positive women with condom use as well as talking with their partners about HIV,” Teti says. “But sometimes they weren’t interested in talking about issues like safe sex because they didn’t have a place to live or they were in a violent relationship.” The catharsis the women felt when they discussed their problems resonated with Teti. She was familiar with a British organization that encouraged marginalized people to document their lives through photography, and she thought that idea would work for HIV-positive women. After giving
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cameras to the women with whom she was working, Teti asked them to go home and capture their lives. The women then met back up to present their pictures and discuss positive changes they can make. “There was one woman who took a picture of her poor housing situation and used those pictures to advocate for better housing,” Teti says. “Other people tried to capture the transformation they made in their lives from when they learned they were HIV-positive and felt hopeless to being a hopeful and healthy person today.” The pictures were then showcased at an HIV prevention event in Philadelphia. The success of the Philadelphia pilot program helped Teti win a grant that brought the work to the University of Missouri. This time featuring 12 women’s stories, the photos were shown in a Columbia, Mo., fi lm festival in March and at a St. Louis Regional Arts Commission event March 19 to commemorate National Women and Girls HIV/ AIDS Awareness Day. “I think women documenting their stories through photographs has a positive impact on their health,” Teti says. “This is a project where we hope women realize they’re not alone and that they can work together to solve some of their challenges.”
When San Francisco moved to ban plastic bags in 2007 or even when the city stopped the sale of McDonald’s Happy Meals last year, few who know the city’s liberal bent were surprised. But a push to end circumcision in the City by the Bay is getting some people riled up—and a debate over the health implications of such a decision is flaring. Lloyd Schofield is leading the battle against circumcision, and he’s hoping to gather 7,168 signatures to qualify the issue for the next citywide election in November. If the initiative manages to get on the ballot and pass, anyone convicted of circumcising a minor could receive a $1,000 fine and a year in jail. Schofield’s website (SFMGMBill. org) indicated that, as of March, he was close to obtaining the necessary signatures—the retired 58-year-old describes circumcision as “genital cutting” and says the procedure can cause pain, nerve destruction, infection, disfigurement, and sometimes death. Jewish and Muslim groups have vowed to fight Schofield’s effort. Circumcision has been found to bring HIV rates down in Africa. Recent clinical trials in Kenya, South Africa, and Uganda showed circumcision reduced infection risk by 60%. But Schofield doesn’t buy it. “There is a reverse correlation between circumcision and HIV,” Schofield says. “Some nations in Africa have a higher HIV infection rate—even though most of the men are circumcised—than countries where most of the men are intact. The U.S. has a much higher HIV and STD rate than Europe, and most American men have been circumcised, while most European men are intact.” A San Francisco study conducted in 2008 found that circumcision had a negligible effect on HIV transmission among men who have sex with men. The mixed messages may be discouraging San Francisco AIDS organizations from taking a position on the matter. San Francisco’s AIDS Emergency Fund declined comment, and the city’s Stop AIDS Project did not respond to requests for comment.
SCALPEL: COMSTOCK
A proposed ban on circumcision in San Francisco prompts questions about the procedure’s effect on HIV
Necessary Roughness? Can certain lubricants increase the chance of HIV transmission and spread strains?
OIL CANS: ANDREW UNANGST
a research team recently evaluated 41 of the hundreds of personal lubrication brands currently available, including a majority of those singled out as favorites in a recent survey of anal sex participants. While none of the products tested showed signs of hindering HIV transmission, four of them—Astroglide Liquid, Astroglide Warming Liquid, Astroglide Glycerin & Paraben-Free Liquid, and Astroglide Silken Secret—were shown to significantly enhance the replication of the virus in the in vitro laboratory studies conducted by the nonprofit Population Council. All four contain polyquaternium or polyquaternium-15, two kinds of polymers. According to the study’s lead author, Population Council research technician Othell Begay, polyquaterniums were not found in any of the other lubricants evaluated. Earlier research had indicated that personal lubricants containing the organic compound nonoxynol-9 may cause damage to rectal tissue, providing a direct passageway for HIV strains to reach known target cells like lymphocytes, macrophages, and dendritic cells, which are located
beneath skin surrounding the rectum. However, study coauthor and Population Council senior research investigator José Romero is quick to point out that these findings were all derived from test tube studies. “What happens in the laboratory environment does not always happen in the human body,” Romero says. “In fact, lubricants generally appear to play an important role in preventing the spread of HIV. Intercourse without them can damage cells by creating friction, which could [also] cause tears…thus possibly promoting HIV transmission.” While the Food and Drug Administration requires lubricant manufacturers to test for vaginal irritation, there are currently no mandatory tests to ensure rectal safety. There’s also little to no research on the effect of products not specifically marketed as lube—while research has shown that household items like vegetable oil are commonly substituted for personal lubricants, the effect of these products on HIV transmission and tissue damage is not known.
Life Expectancy The average The average As of 2008, the life 20-year-old 20-year-old who began who started expectancy of the average taking taking early antiretroviral antiretroviral 20-year-old without HIV therapy therapy was: in 2008 between after being 1996 and diagnosed is 1999 after expected to being live to age: diagnosed was expected to live to age:
80
69
56
Source: The Lancet
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W Graeme Smith, captain of the South African national cricket team, practices with children aected by HIV as part of the Think Wise initiative February 22 at the Feroz Shah Kotla stadium in Delhi, India. M AY/J U N E 2 0 1 1 H I V P L U S
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▲ (top) French members of the AIDS activist group ACT UP protest on February 15 in front of the Paris office of LEEM, an association of pharmaceutical companies. The activists were urging drug companies to put more research into treatments for people coinfected with HIV and hepatitis. (above) On World Condom Day (February 11), Mexico City revelers take part in an AIDS Healthcare Foundation– sponsored event promoting safe sex. W Grammy-nominated singer Florence Welch of Florence and the Machine performs February 27 at the 19th annual Elton John AIDS Foundation Academy Awards Viewing Party in West Hollywood.
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W Thousands of HIV-positive people lie down March 2 in Delhi to urge the Indian government to resist European Union pressure to accept provisions in a free trade agreement that protesters believe could restrict access to aordable HIV medications.
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▲ (top) More than $150,000 was raised at the Design Industries Foundation Fighting AIDS Party for Life, which was held January 30 at the Loeb Boathouse in New York’s Central Park. (above) Young attendees pose at the 10th annual UCLA Dance Marathon at the campus of the University of California, Los Angeles. The February 19 event benefited the Elizabeth Glaser Pediatric AIDS Foundation. X Fashion designer Jean Paul Gaultier arrives at the Fashion Dinner Against AIDS January 27 in Paris. The fund-raiser is one of many events organized by France’s Sidaction to raise awareness and money for HIV causes.
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ANNIE
LENNO
The iconic musician is not just speaking out about the need to improve the lives of women and children with HIV/AIDS, she’s singing! By MATTHEW BREEN few musicians will ever experience the international renown that Scottish recording artist Annie Lennox has enjoyed, both as half of the iconic 1980s pop-rock duo Eurythmics and as a solo artist. In total she’s sold over 80 million albums, making her one of the best-selling performers ever. Now 56, the Oscar-winner, United Nations AIDS ambassador, and officer of the Order of the British Empire has turned her attention to fulltime activism, campaigning on behalf of women and children around the world affected by HIV/AIDS. Lennox launched her SING Campaign in December 2007, born out of her participation in Nelson Mandela’s 46664 campaign, which seeks education and health care for people with HIV/AIDS. She performed at the 2003 benefit concert for 46664 in South Africa, where she had one of her first confrontations with the enormous scope of the AIDS pandemic. In her own words, Lennox details why she started SING after meeting Mandela, how she learned about the dire conditions of women and children, and how she keeps her spirits high in the face of a seemingly overwhelming problem. MEETING NELSON MANDELA “We were taken up to one of his residences in Cape Town the day after we arrived
[for the 2003 concert for 46664]. It was quite extraordinary to [Eurythmics band mate] Dave Stewart and me because we had been supporters in our own way of the anti-apartheid movement, and we had both been hugely affected by the fact that apartheid had been gotten rid of. “The thing that was more significant than meeting [Mandela] was his press conference at Robben Island. He gave an audience in the former prison yard standing in front of his former prison cell [his prisoner number at Robben Island was 46664], and it truly was a turning point for me, an extraordinary moment. He was talking about the HIV/AIDS pandemic and especially how it affected women and girls, and it struck me that he used word ‘genocide.’ I had not heard that term being used in connection with the AIDS pandemic, and it struck me. To hear it emanating from Mandela, it was a hugely significant statement and yet one I hadn’t read about it in the front pages of newspapers, as one would think something so serious and significant should have.” THE SCOPE OF THE PROBLEM “[Visiting Cape Town was] like a baptism for me. We were taken into a township where an AIDS hospital had been set up three years before. We were told that when the hospital arrived in the local township
that people themselves were so terrified of it, they had somehow felt this was going to bring the virus to them directly. People had been stoned and attacked. At this time, in 2000, people were really in danger of attack if they disclosed their status. Nobody would dare to come out and say they were HIV-positive. But the staff told me that three years down the line, the people had started to understand and recognize what the hospital was doing, and things have changed. We went in there and saw it all, from young men lying like skeletons to young babies who were half the size they should have been. “On another visit I went to a graveyard, and there were so many graves that had been already been dug—holes in the ground, basically—waiting for children to be buried. When you see this kind of thing it’s unbelievable. Driving around, you’d see the striped marquee tents that look at first like a festival or garden party—but those are actually funeral tents set up to commemorate someone’s death. It’s in the details that you start to realize what [AIDS] really looks like. Or you go to a hospital to see queues of people just lining up to see a doctor, and the doctors and nurses are just completely overwhelmed, flooded with people coming in. You’ve never seen anything like this in a Western country.”
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AIDS AS A HUMAN RIGHTS ISSUE “The basic question about human rights is, Do we have the right to have access to medical health care? Here’s the deal: If you have access to money that will pay for private health care, you can have access to treatment. But if you’re poor and you’re in the trap of poverty, you’re put immediately into a life-threatening position. This is very much still the case for millions of people if they can’t get access to antiretroviral treatment and testing and the hand-in-hand pairing of nutrition and treatment. “When I was looking at this I was thinking, Wow, if you’re poor, you don’t have the right to health and life in actual fact, because you’re just a step away from death. So how do governments properly respond to this around the world, to the millions of people who have died, the millions who continue to die? Surely these lives must be worth saving. What is it that says that one person’s life is worth saving when another person’s isn’t? Oh, I see, it’s just the distinction between having money or not. That very basic point struck me. “I think about mothers—I’m a mother myself, I have two daughters. I think about how women struggle so much for support; in many cases they are taking the burden of raising the children and trying to get them access to food, health care, and education. One does think, Oh, my God, this mother is going to die, and her children will be left with a child-headed household. Or about a woman carrying a baby as a pregnant mother, if she doesn’t have access to treatment, what’s going to happen then? We do have nevirapine [medication given to women during labor to prevent HIV transmission to their children], we do have medication that can prevent the transmission of the virus right from the first stages of life, and that is an extraordinary thing! Can you imagine if a third of all pregnant women in the U.K. or Germany or France or across the United States or Canada, that a third of all pregnant women had HIV and they couldn’t get access to treatment? You’d have a generation wiped out.” LAUNCHING THE SING CAMPAIGN “I realize that I felt so shaken by what I’d seen [in South Africa] and also by the fact that it wasn’t being covered. I couldn’t just ignore it. I’d been induced into the 46664 campaign, and I’d performed at the concerts many times, and I had turned up at press conferences with Mandela and sat with him… But to be frank, I felt limited—I felt I wasn’t able to do enough. “That’s what eventually led to meeting Zackie Achmat [founder and chairman of South African AIDS activism organization] Treatment Action Campaign, first of all, and then secondly, I thought if I formally launched
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When Lennox first encountered 7-year-old Avelile, she was weeks from death (top), but a mere five months of treatment later (above), she has a full life ahead of her.
my own campaign, that would give me a formal platform as an activist and I could build on it. “It’s been a long haul. It started off really in earnest in 2004, when I met Zachie. It started as a massive learning curve. I felt that I just didn’t know where I’d been with regard to the information and the understanding as to what the pandemic really was about. I started to ask questions and I started to read. It was a shock finding out the scale of things and then realizing that I hadn’t understood it. That really shook me and I started asking, ‘What can I do, what can I do?’ And that was the journey. And, you know, it took me to places where I’d meet people without knowing exactly who they were, and at first Zachie was one of those people. “I was asking questions back in the day, like ‘Why isn’t the government doing anything? How can this be?’ At the time there was this terrible situation with the South African president [Thabo Mbeki] and [Manto Tshabalala-Msimang] the health minister, with his denialist responses. The struggle of an activist campaign like Treatment Action Campaign was just gigantic. These are grassroots activists that are themselves living with HIV and AIDS
and trying to get access to treatment so they can try to extend their lives. “SING was launched in 2007. I was always trying to contact people and ask, ‘Can I be of service?’ And eventually I thought perhaps the best thing to do is just to have my own campaign. It’s not a huge organization; it’s just me, ostensibly, and a few people that’ve helped me, and a website. Essentially, wherever I go in some capacity or another, I’m an advocate for the issue and I can talk about it. I can be a spokesperson, a representative, a voice for women who don’t have necessarily have much of a voice. I thought that maybe I could get access to people who were working and doing fantastic things to make transformation. “My gender gives me a connection to women and other mothers, and that seemed like a no-brainer to me. If I have the platform as a U.N. AIDS ambassador, if I have the platform as a representative of the Scottish parliament, I can get access to people who can be decisionmakers or make judgment on budgets or decide that they can be part of a movement, that builds on its strengths. That’s the kind of thing I think that I can do.”
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DEFEATING DISCOURAGEMENT “I think that anybody who is working as an activist in any field is going to look at the big picture, and quite often you feel overwhelmed because sometimes [you wonder], How is this ever going to get solved? But you know that lovely story about a man walking on the beach picking up starfish one by one and throwing them back into the sea? I sort of meet people and think, Well, that person’s life has been changed by this, or that has made a difference, so it is worth it. “Gosh, I can very often get discouraged, and yet I have to sort of take stock in those moments, and say, ‘Hang on a minute. What would it be like if you just stopped doing this? Is what you’re doing actually contributing?’ And it is. I may never see the solution to this problem in my lifetime, although I’d love to. I asked Desmond Tutu the same question. I asked, ‘How do you keep from feeling despairing about this? It’s so overwhelming and so depressing at times.’ And he just said, ‘We cannot ever let hope be consumed by despair.’ So we have to find some way of doing that.” A LITTLE GIRL NAMED AVELILE “When we left Avelile in the hospital [in South Africa], we didn’t know if she was going to live or die—and Avelile is one of millions of children. [At age 7 she weighed as much as a 1-year-old, so] they put her on a feeding program, and she had pneumonia, she had what you’d describe as fullblown AIDS. It didn’t look good. And five months later we went back, and that encounter on the film [at AnnieLennoxSing.com/News/Avelile] is exactly as it was. I hadn’t seen her. My filmmaker said, ‘No no no, I’m not going to tell you what she looks like. I want to film you seeing her exactly as she is,’ and that’s what we did. And wow, if you ever you wanted proof that treatment works, it was there. You see the story of Avelile, a child that’s on the face of death, and you think, Why should this child not be allowed to live a healthy life? She could if she had access to treatment and decent nutrition. She’s alive now because of that, and going to school. That’s what I want to see— you can’t argue with that. “Life is so surprising—you get to places in life that are like, Oh, everything sucks, everything’s crap, and you put on your pessimist view, and you might as well go curl up under a rock and die. And then you get a little thing happening like encountering Avelile and seeing that and witnessing these incredible nurses and doctors and activists, people who are right on the front line, and they do extraordinary work. And you’re just like, Wow! And you bow your head to them.” To view films of Lennox’s visits to Africa, to read news about the SING Campaign’s latest initiatives, or to get involved, visit AnnieLennoxSing.com.
THIRTY YEARS FORWARD… LET’S NOT MAKE IT 20 YEARS BACKWARD! BY ANNIE LENNOX was in Sydney, Australia, when I first heard about HIV and AIDS, in the early ’80s. Eurythmics were riding high on the upswing of a world tour when the news of mysterious killer virus hit the world headlines. With the sobering pieces of information, it looked as if “sex and drugs and rock ’n’ roll” might have to be done a little differently. “Good times” for the boys in the band might have to be curtailed! I don’t believe that anyone could have foreseen or imagined the terrible narrative that would span over three decades. Back then the story of the impending epidemic would have appeared to be the implausible imaginings of a dark science fiction film. Tragically, for millions of men, women, and children across the globe, “real life” has been played out with appalling consequences. The first person I met who was living with the virus was the artist and filmmaker Derek Jarman. We had been set to work together on the Red Hot + Blue project. (The recording, the first in the Red Hot Benefit series, featured a variety of contemporary pop performers reinterpreting a selection of songs by Cole Porter. Released in 1990, it sold over a million copies worldwide and was one of the first major AIDS benefits in the music business.) Unfortunately, Derek became unwell and had to be hospitalized just before we were about to start our collaboration. A few days later, I visited him in St. Mary’s Paddington and listened quietly as he described how he had struggled to get himself across
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the zebra crossing to the main admissions door after discovering that his eyesight had almost completely disappeared overnight. I realized then that a person living with HIV could be subjected to any kind of unpredictable health challenge at any unpredictable time. Like most people, I assumed that HIV and AIDS mainly affected the gay community, sex workers, or drug users. For some reason I was less aware of the millions of women and children whose lives were being destroyed. That bubble of ignorance was soundly burst after my first trip to South Africa, a country where one in three pregnant women is carrying the virus. Back then in 2003, President Mbeki and his health minister at the time, Manto Tshabalala-Msimang (who drew international condemnation for encouraging AIDS patients to use beetroot, garlic, lemon juice, and olive oil to stop the advance of the disease), had taken the firm “denialist” stance while hundreds of thousands of South African citizens were literally dying before they could access treatment. Since then, due to the dedicated work of thousands of individuals and organizations, things have changed, and certain things have improved, but there is still so much more to be done. I am very well aware of the complexities faced in the challenge to responding effectively to the AIDS pandemic, but if support for change is withdrawn and budgets are cut back, then the three steps of progress forward will be rapidly turned into two steps back. For me, this is something unimaginable.
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30 VOICES FROM THE PAST 30 YEARS
As AIDS enters its fourth decade, we revisit the people who have fought the disease since day one Whether the starting point is the eight cases of Karposi’s sarcoma in New York City in March 1981 or the five cases of pneumocystis pneumonia in Los Angeles in June that same year, it’s been three decades since AIDS began ravaging our readers’ lives and teaching all of us to live more carefully, love more fervently, and lead by example. These 30 quotes are just a small sampling of the fear, fight, and feats that got us to where we are today.
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“We are seeing the beginning of a major epidemic of cancer. The disease happens to be occurring in the gay community, but what is really relevant is whatever conditions are causing Kaposi’s [sarcoma]. We are very concerned to head off a panic.” Alvin Friedman-Kien, MD, of the New York University Medical Center, 1981
“So far, no one knows with certainty what causes the fatal ‘new’ diseases. Heterosexuals, one person in a monogamous relationship and not the other, even infants have succumbed. Yet many cases are centered in the gay men’s community, especially in New York City. Most of us who know a lot of gay men also know one or more who have died. Living with this situation feels a bit like it must have felt to be alive when the plague was decimating the population of Europe.” David Goodstein, president of Liberation Publications, publisher of The Advocate, in a letter to readers, 1983
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“Two and a half years ago, my friends wondered why I was doing this.” Lynn Paleo, who worked with the San Francisco AIDS Foundation, in a feature about lesbians’ involvement in AIDS activism, 1986
“AIDS is a sex-related disease, and we in the religious community have not gotten our act together on sexuality.” The Reverend Carl Flemister, executive minister of the American Baptist Churches of Metropolitan New York, discussing the spread of HIV, 1985
“My volunteer life at this point is limited exclusively to health education against contracting AIDS. We’ve been deluged with threats and the worst possible hype—media hype—about the dangers of AIDS. Yet there have been very few sound voices coming through saying, ‘Yes, times are tough and they may get worse, but we can do something about it.’ That’s what I’m trying to do.” Actress Zelda Rubinstein on her involvement in an early AIDS awareness ad campaign, 1986
“When confronted with our own mortality, it has become common in our community to have our bodies cremated and our ashes thrown to the four winds. But with the wind goes an important part of our history. And also an important part of our future. I ask you to consider the ramifications of this action on tomorrow’s generation of lesbians and gays as they search for self-esteem. As a person with AIDS, I have thought about this a great deal. I believe that we must be the same activists in our deaths that we were in our lives. I urge those of you who are facing death to find a method of leaving a lasting record of our accomplishments—including the acknowledgment that you were lesbian or gay.” Activist and former Air Force sergeant Leonard Matlovich, 1987
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“Mr. Reagan, did you explain…that sometimes ignorant people act in such a way [toward people with AIDS] that it is frightening.… How long is it going to take before people get smart? We’re not talking about illiterate people. We’re talking about senators and congressmen and the fucking president.” Actress Whoopi Goldberg, speaking at the 1987 March on Washington
“Now I deal regularly with the phenomenon of young men who come up after a concert, with tears in their eyes, and say, ‘I just want to thank you.’ And without them saying it, I know they’ve had a friend who has died of AIDS.” Folksinger and songwriter Joan Baez, 1987
“It’s so beautiful. I think it is a strengthening and empowering statement of hope and remembrance. If people come away from here with anything, I want it to be love, love for our community. I want people who come here to understand that even as this epidemic continues, we’re a good people, we’re loving people, we take care of each other, and we’ve got the strength and the will to beat this disease.” Activist Cleve Jones at the launch of the AIDS Memorial Quilt at the 1987 March on Washington
“At first, I waited politely for the president to respond to the epidemic.… After about a year, I realized the government wasn’t going to do anything, so I started doing safer-sex education with community-based AIDS organizations. By 1985, it was becoming clear that we needed to take this a step further, that civil disobedience would be as important as caregiving if we wanted real change.” Waiyde Palmer, an activist who helped organize an AIDS protest during a 1989 San Francisco Opera performance of Falstaff
“What we don’t need is another study. What we need is leadership, and…once again, the president is hiding.” U.S. representative Henry Waxman, a longtime critic of President Ronald Reagan’s inaction on AIDS, 1988 22 | H I V P L U S M AY/J U N E 2 0 1 1
“Now that I’ve resigned myself to living, how am I going to make something of it? There’s a question I ask myself and ask of everybody who is struggling to heal themselves, everybody who is dealing with AIDS, dealing with being gay, dealing with this painful world: ‘Where is your passion? Why do you love, and what are you doing about it?’ ” Choreographer Bill T. Jones, 1990
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“Remember that someday the AIDS crisis will be over. And when that day has come and gone, there will be people alive—gay and straight people, black and white people, men and women— who will hear that once there was a terrible disease and that a brave group of people stood up and fought and in some cases died so others might live and be free. I’m proud to be with the people I love—those who are fighting this war—and to be a part of that fight. And after we kick the shit out of this disease, I intend to be alive to kick the shit out of this system so that it will never happen again.” Film critic, author, and GLAAD cofounder Vito Russo at the October 1988 ACT UP FDA protest
“I wanted to do something about AIDS through the eyes of the gay community. There was nothing else out there, and people kept saying, ‘Why is this still a taboo subject?’ ” Lindsay Law, executive producer of the film Longtime Companion, 1990
“I hear people say, ‘Oh, gee, wasn’t it horrible then?’ but it’s just as horrible now. It’s just on a grander scale. Instead of spending $20 million, we spend $2 billion, but instead of having 10,000 cases, now we have 200,000 cases.” Randy Shilts, former Advocate staffer and author of And the Band Played On,
1993
“I tell people when I go out to speak that no matter how people got this virus, we’ve got to open our arms up to everybody—not just to me because I’m heterosexual. Until you’re able to educate society—not just about AIDS and HIV but about gays and stuff—they’re always going to say and do stupid things.” Retired basketball player Magic Johnson, 1992
“For those with HIV, never despair, never give up, because things are happening all the time, because we will get there someday, and it could be even sooner than some of us dare to expect.”
“I’ve lost incredible numbers of people. I’m to the point where I don’t even remember who’s alive anymore.… Some days I just assume everybody’s dead. I went through a one-year period where I’d say that I just don’t have anyone I love anymore. I had one friend whose ashes are buried in my backyard. I’ve done four quilts, and that’s just for people no one else had done it for.” Actor and playwright Harvey Fierstein, 1991
Mathilde Krim, founding chairman of amfAR, 1993
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“In 1986, when a great number of people that I knew had already died and were infected, I just assumed that I was infected also, because I couldn’t imagine why I wouldn’t have been. Finally, I had the courage to go and get the test, which was one of the scarier moments of my life. I found out that I was HIV-negative. At first I didn’t understand it, and then I felt guilty because so many friends of mine were dealing with this issue and I had been released from this burden. After a period of time, I thought, I’m a very lucky man, and I have to show up in this problem, not because I’m fighting for my own life but because I have to be a part of this fight. I’ve been extraordinarily fortunate in many ways, and I want to be a part of the solution.” Producer and philanthropist David Geffen, 1992
“Slick Willie, the Republicans were right. We should never have trusted you. You are doing nothing while we die. One year later, lots of talk, but no action. Bill, while me and my community are dying in ever-increasing numbers, all you do is talk.” ACT UP member Luke Montgomery (“Luke Sissyfag”), who interrupted a speech by President Bill Clinton at an AIDS ward at Georgetown University Medical Center, 1994
“I remember complaining, ‘Why isn’t anybody doing anything? Why isn’t anyone raising money?’ And it struck me like lightning: ‘Wait a second, I’m not doing anything.’ So with the help of several other people, we put on the first-ever gay benefit here, the Commitment to Life. Betty Ford was the guest of honor, and it took about a year to put together. I’ve never heard so many nos in my life. Oh, my God, it was unbelievable! Nobody in this town wanted to know or be a part of it. They said, ‘No, this is one where you want to stay away from. There’s a stigma.’ I didn’t even know that Rock Hudson was sick yet. I found that out two or three months after I was involved.” Actress and activist Elizabeth Taylor, 1996
“[As gay men] we’re conditioned to think that we’re always at risk for HIV. I know that anytime I’ve gone for an HIV test, I always worry, even if I know I didn’t engage in unsafe sexual behavior or inject drugs.” José Zuniga, a volunteer for a 1997 live-virus HIV vaccine trial
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“I heard this big, hollow thud, and then I found myself in the water. I just held my head in the hopes… I [didn’t] know if I was cut or not. But I wanted to keep the blood in or just not let anybody touch it. Dealing with HIV was really difficult for me because I felt like, God, the U.S. Olympic Committee needs to know about this. But I didn’t anticipate hitting my head on the board. That’s where I became paralyzed with fear.” Olympian Greg Louganis, telling Barbara Walters about his diving accident during the 1988 Games, 1995
“If my story can help people—anybody at all—it is positive. I’ve always tried to help people, whether it be as a gay man or a MexicanAmerican or now, as someone who is HIV-positive.” National champion figure skater Rudy Galindo, 2000
“If we can create an engine called Microsoft that can put a computer in virtually every home in America, if we can create an engine called Nike that can put sneakers on the feet of people all over the world, then we have to begin to create engines—multibilliondollar engines—that are addressing the great social causes of our time.” AIDS Rides founder Dan Pallotta, 2002
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“I wonder now as I look around me, Who is going to carry my torch?” Television personality and AIDS educator Pedro Zamora, testifying before Congress, 1994
“The first year of Gay Men’s Health Crisis and the first four years of ACT Up were some of the most exciting years I have ever felt in my entire life. I have never felt such love, support, and energy among all of us fighting for common goals.” Author and activist Larry Kramer, 1999
“Over time, while the pandemic has not left the GLBT community, it has vastly extended within the LGBT community and into other communities, including heterosexual women, the majority of whom are women of color.” Ana Oliveira, executive director of Gay Men’s Health Crisis, 2005
“At the tender age of 41—a year longer than I once thought I would live—I have never felt better. HIV transformed my life, made me a better and braver writer, prompted me to write the first big book pushing marriage rights, got me to take better care of my health, improved my sex life, and deepened my spirituality.” Author and political pundit Andrew Sullivan, 2005
“Not until same-sex relationships are fully recognized as equal to opposite-sex relationships; not until a gay or bisexual soldier’s sacrifice is equal to that of a straight soldier; not until we put an end to the chipping away of a young boy’s self-esteem by bullying in the school yard; not until there is a time when the concern is not who we love but that we love will the stigma of HIV/AIDS fade. And only then will our nation do all it can to finally put an end to a disease that so significantly impacts gay and bisexual men and people of color.” A joint statement by Marjorie J. Hill, chief executive officer of Gay Men’s Health Crisis; Rea Carey, executive director of the National Gay and Lesbian Task Force; and Paul Kawata, executive director of the National Minority AIDS Council, 2010 M AY/J U N E 2 0 1 1 H I V P L U S
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ATRIPLA Important Safety Information and Indication INDICATION ATRIPLA® (efavirenz 600 mg/emtricitabine 200 mg/tenofovir disoproxil fumarate [DF] 300 mg) is a prescription medication used alone as a complete regimen or with other medicines to treat HIV-1 infection in adults. ATRIPLA does not cure HIV-1 and has not been shown to prevent passing HIV-1 to others. The long-term effects of ATRIPLA are not known at this time. People taking ATRIPLA may still get infections that develop because the immune system is weak or other conditions that happen with HIV-1 infection. Do not stop taking ATRIPLA unless directed by your healthcare provider. See your healthcare provider regularly.
•Have ever had seizures: Seizures have occurred in patients taking a component of ATRIPLA, usually in those with a history of seizures. If you have ever had seizures, or take medicine for seizures, your healthcare provider may want to switch you to another medicine or monitor you. •Have ever had mental illness or use drugs or alcohol. Contact your healthcare provider right away if you experience any of the following serious or common side effects:
Serious side effects associated with ATRIPLA: •Severe depression, strange thoughts, or angry behavior have been reported by a small number of patients. Some patients have had thoughts of suicide, and a few have actually committed suicide. These problems may occur more often in patients who have had mental illness. IMPORTANT SAFETY INFORMATION Contact your healthcare provider right away if you get the following •Kidney problems (including decline or failure of kidney function). side effects or conditions associated with ATRIPLA: If you have had kidney problems, or take other medicines that may • Nausea, vomiting, unusual muscle pain, and/or weakness. These cause kidney problems, your healthcare provider should do regular blood tests. Symptoms that may be related to kidney problems include may be signs of a buildup of acid in the blood (lactic acidosis), a high volume of urine, thirst, muscle pain, and muscle weakness. which is a serious medical condition. •Other serious liver problems. Some patients have experienced • Light-colored stools, dark-colored urine, and/or if your skin or the serious liver problems, including liver failure resulting in transplantation whites of your eyes turn yellow. These may be signs of serious or death. Most of these serious side effects occurred in patients with a liver problems. chronic liver disease such as hepatitis infection, but there have also • If you have HIV-1 and hepatitis B virus (HBV), your liver disease been a few reports in patients without any existing liver disease. may suddenly get worse if you stop taking ATRIPLA. •Bone changes. Lab tests show changes in the bones of patients treated Do not take ATRIPLA if you are taking the following medicines with tenofovir DF, a component of ATRIPLA. Some HIV patients treated because serious and life-threatening side effects may occur when with tenofovir DF developed thinning of the bones (osteopenia), which taken together: Vascor® (bepridil), Propulsid® (cisapride), could lead to fractures. Also, bone pain and softening of the bone Versed® (midazolam), Orap® (pimozide), Halcion® (triazolam), (which may lead to fractures) may occur as a consequence of kidney or ergot medications (for example, Wigraine® and Cafergot®). problems. If you have had bone problems in the past, your healthcare In addition, ATRIPLA should not be taken with: provider may want to check your bones. Combivir® (lamivudine/zidovudine), EMTRIVA® (emtricitabine), Epivir® or Common side effects: Epivir-HBV® (lamivudine), Epzicom® (abacavir sulfate/lamivudine), SUSTIVA® (efavirenz), Trizivir® (abacavir sulfate/lamivudine/zidovudine), •Dizziness, headache, trouble sleeping, drowsiness, trouble TRUVADA® (emtricitabine/tenofovir DF), or VIREAD® (tenofovir DF), concentrating, and/or unusual dreams. These side effects tend to because they contain the same or similar active ingredients as ATRIPLA. go away after taking ATRIPLA for a few weeks. These symptoms may ® ATRIPLA should not be used with HEPSERA (adefovir dipivoxil). be more severe with the use of alcohol and/or mood-altering (street) drugs. If you are dizzy, have trouble concentrating, and/or are drowsy, Vfend® (voriconazole) or REYATAZ® (atazanavir sulfate) with or without avoid activities that may be dangerous, such as driving or operating Norvir® (ritonavir) should not be taken with ATRIPLA since they may lose their effect and may also increase the chance of having side effects machinery. from ATRIPLA. Fortovase® or Invirase® (saquinavir) should not be used •Rash is a common side effect that usually goes away without any as the only protease inhibitor in combination with ATRIPLA. change in treatment, but may be serious in a small number of patients. Taking ATRIPLA with St. John’s wort or products containing St. John’s wort •Other common side effects include: tiredness, upset stomach, vomiting, is not recommended as it may cause decreased levels of ATRIPLA, gas, and diarrhea. increased viral load, and possible resistance to ATRIPLA or Other possible side effects: cross-resistance to other anti-HIV drugs. This list of medicines is not complete. Discuss with your healthcare •Changes in body fat have been seen in some people taking anti-HIV-1 provider all prescription and nonprescription medicines, vitamins, medicines. The cause and long-term health effects are not known. or herbal supplements you are taking or plan to take. •Skin discoloration (small spots or freckles) may also happen. Tell your healthcare provider if you: •If you notice any symptoms of infection, contact your healthcare •Are pregnant: Women should not become pregnant while taking provider right away. ATRIPLA and for 12 weeks after stopping ATRIPLA. Serious birth defects •Additional side effects are inflammation of the pancreas, allergic have been seen in children of women treated during pregnancy with reaction (including swelling of the face, lips, tongue, or throat), one of the medicines in ATRIPLA. Women must use a reliable form of shortness of breath, pain, stomach pain, weakness, and indigestion. barrier contraception, such as a condom or diaphragm, even if they also You should take ATRIPLA once daily on an empty stomach. Taking use other methods of birth control, while on ATRIPLA and for 12 weeks ATRIPLA at bedtime may make some side effects less bothersome. after stopping ATRIPLA. •Are breastfeeding: Women with HIV should not breastfeed ATRIPLA is one of several treatment options your doctor may consider. because they can pass HIV through their milk to the baby. Also, ATRIPLA may pass through breast milk and cause serious harm You are encouraged to report negative side effects to the baby. of prescription drugs to the FDA. •Have liver problems, including hepatitis B or C virus infection. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
Please see Patient Information on the following pages. © 2010 Bristol-Myers Squibb & Gilead Sciences, LLC. All rights reserved. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. EMTRIVA, VIREAD, and TRUVADA are trademarks of Gilead Sciences, Inc. SUSTIVA and REYATAZ are registered trademarks of Bristol-Myers Squibb. All other trademarks are the properties of their respective owners. 697US10AB0470/TR7631 11/10
“I’m so glad I was able to save on my co-pay.” Phil li p
on ATRIPLA for 2 years
ATRIPLA is the #1 prescribed HIV regimen.* About ATRIPLA: • Only ATRIPLA combines 3 HIV medications in 1 pill daily. † • Proven to lower viral load to undetectable in approximately 7 out of 10 patients new to therapy, and also raise T-cell‡ (CD4+) count to help control HIV through 3 years of a clinical study.§
• ATRIPLA does not cure HIV-1 and has not been shown to prevent passing HIV-1 to others.
Selected Important Safety Information: Some people who have taken medicine like ATRIPLA have developed the following: a serious condition of acid buildup in the blood (lactic acidosis), and serious liver problems (hepatotoxicity). For patients with both HIV-1 and hepatitis B virus (HBV), hepatitis may suddenly worsen if ATRIPLA is discontinued. Please see detailed and additional Important Safety Information, including the bolded information to the left. †
Defined as a viral load of less than 400 copies/mL. Average increase of 312 cells/mm3. § In this study, 227 patients took the meds in ATRIPLA. ‡
Patient model. Individual results may vary.
Your doctor may prescribe ATRIPLA alone or with other HIV medications.
Talk to your doctor to see if ATRIPLA is right for you. * Synovate Healthcare Data; US HIV Monitor, Q1 2010.
To learn more, visit www.ATRIPLA.com
For eligible patients on ATRIPLA*
The ATRIPLA Co-pay Assistance Program
You may be able to save up to
$
200
on your monthly co-pay for ATRIPLA prescriptions for a year (up to $2,400 in one year)
Once you are prescribed ATRIPLA, we want to help you pay for your medication with the ATRIPLA Co-pay Assistance Program. This program will help cover the cost of your monthly co-pay immediately upon activation. *Subject to terms and conditions. For example, patients covered under government programs (such as Medicare and Medicaid) are not eligible.
For more information, visit ATRIPLA.com/copay and talk to your doctor or call 1-866-784-3431 to enroll.
ATRIPLA Patients: Open to see how you may be able to save on your prescriptions
“My entire HIV regimen in one pill daily. For me, that’s great.” Phil lip
on ATRIPLA for 2 years
ATRIPLA is the #1 prescribed HIV regimen.* About ATRIPLA: • Only ATRIPLA combines 3 HIV medications in 1 pill daily. † • Proven to lower viral load to undetectable in approximately 7 out of 10 patients new to therapy, and also raise T-cell‡ (CD4+) count to help control HIV through 3 years of a clinical study.§
• ATRIPLA does not cure HIV-1 and has not been shown to prevent passing HIV-1 to others.
Selected Important Safety Information: Some people who have taken medicine like ATRIPLA have developed the following: a serious condition of acid buildup in the blood (lactic acidosis), and serious liver problems (hepatotoxicity). For patients with both HIV-1 and hepatitis B virus (HBV), hepatitis may suddenly worsen if ATRIPLA is discontinued. Please see detailed and additional Important Safety Information, including the bolded information to the left. †
Defined as a viral load of less than 400 copies/mL. Average increase of 312 cells/mm3. § In this study, 227 patients took the meds in ATRIPLA. ‡
To learn more, visit www.ATRIPLA.com
LOOKING GOOD
DOING GOOD
With Lady Gaga as its spokeswoman, M.A.C. cosmetics hopes to set records for AIDS fund-raising this year a lot of companies donate money to charity, but almost none of them give as much to AIDS causes, or with as much pizzazz, as M.A.C. cosmetics. Over the past 17 years, M.A.C., part of the Estée Lauder Cos., has donated $202 million for HIV prevention and treatment through the M.A.C. AIDS Fund—in 2010 alone the makeup purveyor raised $37 million through the sale of its Viva Glam lipstick and lip gloss, of which every penny went to HIV charities. Nancy Mahon, the senior VP of M.A.C cosmetics and executive director of the M.A.C. AIDS Fund, tells HIV Plus she has set a goal of $50 million in Viva Glam sales this year. Mahon and M.A.C. have a big ally to help them reach that milestone—Lady Gaga, who serves as spokeswoman for the M.A.C. AIDS Fund. “Lady Gaga has enormous appeal, particularly with young people, but really across sexuality, gender, and age,” Mahon says. “She has more Facebook fans than anyone in the world besides Obama.” Gaga, who was co-spokeswoman for Viva Glam last year with Cyndi Lauper, serves as inspiration for the M.A.C. Viva Glam Gaga 2 nude lipstick. On the VivaGlam.com site,
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people can post photos, share stories about how HIV has affected them, and even take part in a fashion collaboration with Gaga and her stylist, Nicola Formichetti. On top of this, Gaga frequently talks in interviews about Viva Glam, the M.A.C. AIDS Fund, and AIDS in general—to raise awareness, she dressed as a condom for a February appearance on Good Morning America. “Gaga is very committed to ending the shame and stigma around HIV. She’s really about having those tough conversations,” Mahon says. “It’s just so important that folks who are positive can say, ‘Isn’t Gaga cool? Don’t you love her music? Oh, and she’s speaking on my behalf.’ ” Gaga’s job is also to help push her lipstick. Mahon says M.A.C. has deployed “store ambassadors” to help too—these M.A.C. employees give background on the charity and work to increase sales and ensure that Viva Glam products have prominent placement throughout M.A.C.’s 1,500 locations. That’s quite a commitment to charity, considering 100% of proceeds for the $14.50 lipsticks go to AIDS efforts. Last year the money raised by Viva Glam went mostly to women’s HIV organizations, both nationally and internationally, but Mahon says
the focus is expanding this year. “We continue to fund a lot of great projects in the U.S. around women, but we have also added programs specifically targeted at men who have sex with men,” Mahon says. “Looking at the data and talking with the experts in the field, we found that 68% of men who have sex with men are infected by their primary partner. So we’ve funded a half-million-dollar couple intervention with Emory University in Atlanta to really talk with couples so they can be better protected.” This year the M.A.C. AIDS Fund will also give money to UNICEF to help prevent mother-to-child HIV transmission. Some of those efforts include making sure HIV-positive mothers in Africa continue their care after they have their babies. Mahon says the M.A.C. AIDS Fund has provided many resources to South Africa’s NOAH—Nurturing Orphans of AIDS for Humanity— and will continue to do so throughout 2011. “In an environment where so many corporations are making cutbacks [to philanthropy] I’m just so happy I’m running a fund where the corporation is making a bigger commitment to give even more money,” Mahon says. ✜
PHOTO BY NICK KNIGHT FOR M.A.C.’S VIVA GLAM CAMPAIGN
BY NEAL BROVERMAN
HAART BEATS
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Race to the Start?
MARTIN BARRAUD
A trial is under way to determine, once and for all, the right time for HIVers to begin medication people with hiv face several new issues once they are diagnosed, but one of the most crucial is what medications they should take and when they should start taking them. Depending on where you get medical care, the advice on medications can vary. Because of discrepancies in treatment, several organizations from around the world are coming together to determine a standardized point in time that people with HIV should start taking antiretroviral treatment. While the U.S. government advises that people start a drug treatment regimen once their CD4 counts fall below 500 cells per cubic millimeter, the World Health Organization advises HIVers to start medication when the count dips below 350. “The reason the guidelines differ around the world stems largely from the absence of randomized trials,” says principal researcher James D. Neaton, Ph.D., of the University of Minnesota. “There are no trials, really, looking at the benefits of treatment at 350. There’s fairly weak evidence for 350 versus 250.” Neaton adds that the U.S. Department of Health and Human Services changed its guidelines based on observational studies, with inconsistent results, showing that antiretroviral therapy should begin when the CD4 count is at 500. “The best type of evidence [to determine the right CD4 level to begin treatment] would be from a randomized trial, where you can weigh the risks and benefits in an unbiased manner,” he said. Some of those advocating a later
start point to harsh side effects associated with long-term antiretroviral use and the possibility of drug resistance developing, says National Institute of Allergy and Infectious Diseases director Anthony S. Fauci, MD. However, Fauci also notes there is some evidence that people with HIV stay healthier if they begin treatment at higher CD4 counts. “The [Strategic Timing of Antiretroviral Treatment] trial will provide a more clear-cut answer as to the best time for HIV patients to begin treatment, taking into account both the risks and benefits associated with early versus deferred treatment,” Fauci says. The trial, involving 4,000 adult participants with CD4 cell counts higher than 500 who have never taken any antiretroviral medication, will start in 2012, if not sooner, in 30 countries. Once they begin the trial, half the participants will be randomly assigned to receive immediate antiretroviral therapy, and the other half will wait until their CD4 counts dip below 350 or an AIDS-related event occurs. Participants will then be examined by medical professionals after one month, four months, and then once every four months until March 2015. Several pharmaceutical companies that currently produce the standard medications will provide the antiretroviral treatment. In addition to the main focus of the trial, researchers will also look at HIV transmission risk behaviors, treatment adherence, drug resistance, health care utilization, and the cost of care. ✜
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HAART BEATS
Mathematical theories converge to help make meds more effective
of course mathematics plays a crucial role in medicine: All manner of treatments rely on a practitioner’s knowledge of ratios, proportions, and probabilities. Now complex computer-driven mathematics models are helping researchers determine how to make HIV drugs even more effective and less costly. Researchers at Johns Hopkins and Princeton universities are employing intricate mathematical theories to discover the best possible ways to medicate people with HIV, minimizing human trials, dosage sizes, and frequency while maximizing effectiveness. By developing a method that combines concepts from optimization theory (a field of math that calculates the best option among a number of choices) with those of computational biology (a field that examines theoretical and experimental questions in biology), scientists can get much closer to determining the most beneficial— and least costly—medications to attack the
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virus. Using this model, researchers were able to predict the effectiveness of drugs against the virus. Fuzeon, an injection-based drug often given to HIVers who are resistant to fi rstline medications, can cost up to $20,000 annually for one person. However, the scientists used their computations to fi nd a more effective way to synthesize the drug, making it more aggressive toward only the parts of the virus that need to be penetrated. The structure of their version of the drug is also more compact, less prone to erosion, and longer-lasting in the body. HIVers can take less of the drug and less frequently. “One could never test all the possible peptides [amino acid chains] to see if they are effective against HIV,” Princeton professor Christodoulos Floudas says. “But this model was able to sort through millions of possibilities and identify just a few that show promise.”
Old Drug, New Tricks A decades-old drug therapy for alcoholism may help eradicate latent HIV
Eradicating HIV from the body, therefore finding an elusive cure, remains a monumental scientific challenge in part because antiretroviral medications and the immune system can’t access HIV harbored in cells in a resting state— and these are long-lived cells, found in the brain, gut, and elsewhere. But in January, researchers with the University of California, San Francisco, and Johns Hopkins University launched a small study to find out whether the oldest drug therapy for alcoholism could infiltrate hidden HIV “reservoirs.” Disulfiram, marketed under the brand name Antabuse, causes nausea and vomiting when combined with alcohol. But in individuals with HIV, it may also block an enzyme that helps the virus stay dormant in cells. Disulfiram has already been shown to inhibit the enzyme in cancer cells, while other drugs that have a similar blocking effect have reactivated HIV within cells in lab studies. “Theoretically, disulfiram will force HIV to replicate and thus result in the death of the infected cell,” researchers predict on a web site for the study. “Standard antiretroviral drugs should prevent new cells from becoming infected.” Though the strategy may not reduce an individual’s viral load to zero, “the end result of this process is that the total amount of HIV in the body will decline over time.” The study, in which participants will take disulfiram for two weeks and then be monitored over a longer period, is expected to conclude in June 2012.
FROM TOP: GREGOR SCHUSTER; PULP
Swapping Out a Microscope for Math
Seizures Halt Drug Trials Development of an otherwise effective drug is halted due to a considerable side effect in february, viiv Healthcare announced that it will halt further development of a drug known as GSK-761, which would block HIV’s ability to mutate in healthy cells and block the virus from spreading, because of concerns from the U.S. Food and Drug Administration. The drug had shown effectiveness in previous trials at low, once-daily doses and proved active against HIV strains that were resistant to similar drugs. However, the FDA halted the continuation of the study after a clinical trial involving treatment-experienced patients produced four reports of seizures. A Viiv Healthcare representative announced to HIV treatment activists that the company felt the most responsible thing to do
was put GSK-761 studies on hold while gathering additional information from the trial that would help researchers decide the best way to proceed. According to company officials, the study’s investigators have been sent two letters informing them of the situation: “These letters provide a summary of the adverse events, and guidance that investigators are to contact their patients, inform them of the risk of seizures, and bring them in as soon as possible to change their medication from [GSK-761] to a suitable alternative and arrange for follow-up care.” The company added that the FDA-imposed hold does not mean that the overall development of the drug has ended.
Gimme a D
FROM TOP: COMSTOCK ; ROBERT KIRK
Shaking up your antiretroviral treatment may improve your health by upping your vitamin D levels some hivers experience decreased levels of vitamin D, a deficiency that can lead to muscle weakness, osteoporosis, weakened immunity, and certain types of cancer. But a group of researchers has discovered that swapping medications could help bring levels up, according to The AIDS Beacon. The researchers tested the vitamin D levels of 219 participants who were taking antiretroviral drugs. Prezista, boosted with Norvir—both protease inhibitors—was given to participants who were not already taking those medications. Two years later, most participants had significantly higher vitamin D levels than they did at the beginning of the study. Researchers note that having darker skin, minimal exposure to sunlight, and taking the medications Sustiva or Retrovir were the leading factors in having low to severely low vitamin D in the blood. The vitamin can be found naturally in products such as milk and salmon. The study was published in the January 12 edition of AIDS Research and Human Retroviruses.
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HUW JONES
MIND + MOOD
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Gary McClain, Ph.D.
Climb Out of the Downward Spiral If you find yourself fixating on slights and mistakes, here’s how to move past it “i just can’t get what happened out of my mind!” Ever find yourself thinking about a situation over and over (and over)? Maybe you had a bad day at work, a conflict with a coworker, or what felt like mistreatment from your boss. It could’ve been that someone on the street or in the next car acted thoughtlessly or aggressively, or a family member yet again disrespected your feelings. Maybe you’re blaming yourself for your status or for being lax in your exercise, diet, or medication routine. Later that day, you find yourself replaying the details in your mind like a movie scene stuck in a continuous loop, watching every single detail, obsessing about the whats and whys— what you said and did, what was done to you, what you wish you had said or done, what you wish you hadn’t done. This unhealthy obsessing is called fi xation. It’s all too easy for anyone, regardless of circumstance or status, to move from contemplation to fi xation—there are a number of reasons for this: Some people fi xate on perceived slights and bad choices to avoid their feelings. They fall into their intellect and, as in a courtroom scene, go through every last detail, over and over, to try and make sense of what happened. It’s a kind of analysis paralysis.
Other people fi xate to reexperience feelings. These may be very unpleasant feelings—loss, sadness, fear, anger—but they are nonetheless familiar feelings and therefore comfortable in their own way. It’s kind of like beating up on yourself. Either way, fi xation is an ongoing process of gathering evidence that will keep you emotionally stuck and disempowered. But here’s the good news: No one has a life sentence to relive the past.
we cannot change. Life isn’t fair, and we don’t get to control what happens. Stop fighting the facts.
Give yourself a pep talk. Tell yourself that you did the best you could. You were who you were during that time and you can’t go back and change anything. You’re at a different place in your life now, and you’re handling life on life’s terms.
Look around you. What’s positive in your life right now? There are likely people who care about you and whom you care about in return. Revel in the things you enjoy doing, be it exercise, painting, or watching old movies. Appreciate the fact that you are taking care of yourself. Get your mind engaged in what’s right in the world.
Don’t take things so personally.
We can’t control how other people behave. They act out of their own self-interest or out of their own suffering, or they’re just not paying attention. Bad behavior toward you may have arisen out of ignorance, or maybe you just happened to be the convenient target. You are not doomed to being mistreated by others. Meditate on acceptance. You might want to use the serenity prayer, which encourages us to accept what
Talk to someone. Tell your story to an objective friend or a counselor and ask them to help you gain a new perspective on the situation you are obsessing over. Learn some alternative ways to look at your situation and develop strategies for dealing with your feelings. Don’t go through this alone.
Look forward. Make the decision
to consciously let the past be in the past and focus your attention on the road ahead. Life goes on, and it even gets better. McClain is a counselor in New York City with a specialty in coping with chronic health conditions. His books include The Complete Idiot’s Guide to Breaking Bad Habits and Empowering Your Life With Joy.
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LIVING THE QUESTIONS
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Tyler Helms
Fear of the Unknown
PAPER BOAT CREATIVE
As the world gets ready to mark 30 years since the first documented case of AIDS, columnist Tyler Helms considers the ramifications of a long-sought cure i’m constantly challenging myself to try to answer the tough questions in life. I devote much of my thinking to issues related to HIV—and often only uncover more confusion. There is one question I have yet to really consider: “What if tomorrow they found a cure for HIV? What happens next?” Of course, we would all be elated, but I can’t help but wonder if we would be prepared for the fallout that would likely come from such a huge shift in the global health landscape. There is no denying the benefits of a cure, but I urge you to think about all that would be impacted by it. This would be a monumental discovery that could change the face of this earth and, more specifically, the day-to-day lives of millions of people, including myself. While there would be a sense of utter relief at the thought of finally ridding my body of this disease, I would also feel an overwhelming sense of loss. For nearly four years, I’ve worked to come to terms with my diagnosis—I’m still learning how it affects me, my friends, and all those I care about. To suddenly not have that task would leave a void. The better part of my last two years has been consumed with using my HIV story to bring change to the world or, at a minimum, change within my community. In many ways, HIV has given me a voice that I never thought I had or needed. It has fundamentally changed me—I am more compassionate, empathetic, caring, and patient. It has no doubt given me a sense of mortality and urgency, and it has completely shifted my worldview. To think of that primary catalyst suddenly disappearing is frightening.
In my daily conversations about HIV and AIDS, I’ve witnessed some of the best and worst of humanity. I’ve met hundreds of new people whom I likely would have never met otherwise. I’ve spoken at schools, visited HIV centers, and created a bond with a community that is linked by nothing other than this virus that runs in our blood. All these experiences have added new dimensions to my personality. So when I think of a cure, I’m oddly scared of “losing” HIV, just as much as I am scared to live with it. Somehow, there is a part of me that is thankful for the unexpected journey this illness has cast me on. As both AIDS and I enter our 30th years, I find myself with a newfound respect for and pride in my status as an HIV-positive man. I’m not necessarily proud to carry the virus— nor ashamed for how I contracted it—but proud of the community I find myself in, proud of my mind’s response to the unexpected diagnosis, and proud of the people who have joined me along the way. So, yes, every fiber of my being hopes science does find a cure—tomorrow, next week, or in the years to come. But when that happens, I will mourn the passing of this profound experience. I will hold the virus and all it continues to teach me in the highest regard. For perhaps it is not the cure I am scared of at all. Maybe I’m fearful of all that I might unlearn if it’s so quickly taken away. Tyler Helms is a former television journalist and advertising executive. He was diagnosed with HIV in 2007 and came out as positive on World AIDS Day, 2009.
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STATUS SYMBOLS ASK + TELL
buy groceries and things for those who can no longer leave their homes—I often go deliver groceries to people. But more than anything, the money raised will go toward giving people medicine to keep them well. The medicine is very expensive, especially when you don’t have insurance. What was it like working with Donald Trump? Incredible. He’s really done a wonderful thing here, reaching out to these celebrities to come fight for different charities. It’s brilliant. Your 2009 single “Home” also benefited APLA. Yes, every single penny went to them. That song had actually been recorded about eight years ago. Not long after my brother passed, my record company wanted me to put out a song, but I told them I didn’t want to put a song out at that time. But if I decided that if had to do it, I’d put out this particular song and donate all of the money to charity. “Home” is actually a song about my family. It’s about how you all grow up together, and then you go in different directions that take you away from home, but you can always come back and find each other because we’re still together as one.
as a contestant on nbc’s the celebrity apprentice, La Toya Jackson continues her late brother Michael’s commitment to raising funds and awareness for AIDS Project Los Angeles. The 54-year-old singer-songwriter— about to release her long-delayed 11th studio album, Startin’ Over—explains why APLA has become as important to her as it was to Michael. Why did you choose AIDS Project Los Angeles as your charity organization on Celebrity Apprentice? My brother is in the Guinness Book of World Records for giving over $400 million to charities around the world, and AIDS Project Los Angeles was one that was very close to his heart. When I was approached to do Celebrity Apprentice, I thought it would be a wonderful opportunity to bring some awareness to APLA. How did you first get involved with the organization? I got involved with them when my brother passed. I wanted to continue the work with APLA where Michael left off.
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Of all the charities that Michael was involved with, why was APLA so special to him? Well, there are a lot of different charities, and no one charity is better than the others. But there are young kids out there suffering from AIDS, innocent kids who didn’t ask for this and who don’t have a voice, so Michael knew how important it was to find a cure. I remember going to the hospital to see these poor little babies that weren’t any bigger than my hand because they had AIDS. How will the money you raise on Celebrity Apprentice be used to help people? Some will be donated toward the effort to find a cure. Some will go to
How have you been personally impacted by HIV and AIDS? I’ve lost quite a few friends to the disease. I had a makeup artist—he actually did my makeup for my Playboy spread—and we were very close. I just couldn’t understand it in the beginning. He passed away, and then one of my dancers, who was also very close to my heart, passed away. Another friend, Bobby DeBarge, eventually died from the disease as well. It was very troubling to feel like I couldn’t do anything about it. But now I know that even though you can’t cure the disease in one moment, you can certainly do something to help by giving. Do you feel that AIDS awareness has receded since the ’80s and ’90s? Yes, and people need to be reminded that it’s still affecting millions. In the beginning that’s all we heard about, and people were terrified because we didn’t have enough knowledge. We forget the fact that it’s still out there, but it needs to be back at the forefront now so that people can be more aware and can donate more to AIDS-related causes. It’s a disease that’s not going away anytime soon. ✜
WIREIMAGE
Take a Look at Yourself and Make a Change
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Introducing the Savings Coupona for ISENTRESS. Eligibility restrictions, terms, and conditions apply.a To ďŹ nd out more, call 1-866-350-9232 or visit isentress.com. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. a For
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