A SMART+STRONG PUBLICATION APRIL/MAY 2015 POZ.COM $3.99
H E A L T H ,
L I F E
&
H I V
Louder Than Words Healing through artistic activism Life Altering Spencer for AIDS activist Spencer Cox, 1968–2012 from Leaves, an AIDS memorial, by Eric Rhein
A SMART+STRONG PUBLICATION APRIL/MAY 2015 POZ.COM $3.99
H E A L T H ,
L I F E
&
H I V
Louder Than Words Healing through artistic activism Life Altering Spencer for AIDS activist Spencer Cox, 1968–2012 from Leaves, an AIDS memorial, by Eric Rhein
Eric Rhein
CONTENTS
EXCLUSIVELY ON
POZ.COM
Mary Bowman uses poetry to fight stigma and educate about the virus.
POZ STORIES
REAL PEOPLE, REAL STORIES
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.
D
POZ GLOBAL
COVERING THE PANDEMIC
POZ DIGITAL
READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET
40 THE COURSE OF HIS LIFE Memory and activism in the art of Eric Rhein. BY EMILY COLUCCI 44 BASED ON HER TRUE STORY Music and action in the poetry of Mary Bowman. BY CASEY HALTER 48 ART THAT MAKES YOU GO HMMM An exclusive look at the Art AIDS America exhibition. BY TRENTON STRAUBE 5 FROM THE EDITOR In Your Eyes
9 FEEDBACK Go to poz.com/digital to view the current issue and the entire Smart+Strong digital library.
D
iSTAYHEALTHY FREE APP FROM POZ
Go to blogs.poz.com/istayhealthy or scan the QR code below with your mobile device to learn how you can better track your lab test results and meds, as well as set alerts to take your meds and more!
Your letters and comments
10 POZ Q+A
Duane Cramer, celebrity photographer and spokesperson for the “I Design” awareness campaign
16 POZ PLANET
Memoirs about moms and gay sons • an “Ending the Epidemic” crossword • forever Keith Haring • Project Lazarus • design your own condoms • Larry Kramer’s big day • the Celibacy Challenge • Red Flamboyant
24 VOICES
GMHC’s Osvaldo Perdomo recaps the Art & AIDS: Amor y Pasión exhibition honoring HIV-positive artists as well as the life and legacy of Keith Haring.
31 RESEARCH NOTES
Mapping PrEP “Hot Zones” • redefined pharma partnerships • “boosting” killer immune cells • higher HIV death rates in the South
32 CARE AND TREATMENT
Does HIV hurt your hearing? • no more excess heart attack risk? • first year of HIV infection: window of opportunity • FDA approves new hepatitis C regimen • gum disease harms more than just the mouth
39 SURVEY SAYS
Do you get enough sleep and exercise? How well do you manage stress? POZ asks about your health habits.
56 POZ HEROES
As the director of operations at the World AIDS Museum and Educational Center in Wilton Manors, Florida, Ed Sparan does much more than give tours of the facilities.
POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for a 8-issue subscription) by Smart + Strong, 462 Seventh Ave., 19th Floor, New York, NY 10018-7424. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 203. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2015 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® is a registered trademark of CDM Publishing, LLC.
COVER: (LIFE ALTERING SPENCER) ERIC RHEIN; INSIDE COVER: (RHEIN) BILL WADMAN; (BOWMAN) JONATHAN TIMMES; (TYPEWRITER) ISTOCKPHOTO.COM/CHICTYPE; (GLOBE) ISTOCKPHOTO.COM/DNY59
Our domestic fight against HIV/AIDS is different from the other battles against the virus overseas, but our struggles have more in common than not. Go to poz.com/global for news and opinions on HIV/AIDS from around the world.
FROM THE EDITOR
ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF
JENNIFER MORTON MANAGING EDITOR
TRENTON STRAUBE DEPUTY EDITOR
KATE FERGUSON SENIOR EDITOR
BENJAMIN RYAN EDITOR-AT-LARGE
MEAVE GALLAGHER COPY EDITOR
CASEY HALTER
ASSISTANT EDITOR
DORIOT KIM
ART DIRECTOR
MICHAEL HALLIDAY
ART PRODUCTION MANAGER CONTRIBUTING WRITERS
SHAWN DECKER, AUNDARAY GUESS, MARK S. KING, TIM MURPHY, RITA RUBIN CONTRIBUTING ARTISTS
JOAN LOBIS BROWN, LIZ DEFRAIN, JONATHAN TIMMES, TOKY, BILL WADMAN SEAN O’BRIEN STRUB FOUNDER
MEGAN STRUB
LEGACY ADVISOR POZ NATIONAL ADVISORY BOARD
A. CORNELIUS BAKER, GUILLERMO CHACÓN, NEIL GIULIANO, KATHIE HIERS, TIM HORN, PAUL KAWATA, NAINA KHANNA, DAVID MUNAR, DANIEL TIETZ, MITCHELL WARREN, PHILL WILSON
SMART + STRONG IAN E. ANDERSON PRESIDENT
JOHN LA
CHIEF DIGITAL STRATEGIST
SUSAN MARY LEVEY
VICE PRESIDENT, SALES/PUBLISHER
JONATHAN GASKELL
INTEGRATED ADVERTISING COORDINATOR
JOEL KAPLAN CONTROLLER
CDM PUBLISHING, LLC JEREMY GRAYZEL, CEO SALES OFFICE
212.242.2163; 212.675.8505 (FAX) SALES@POZ.COM PRESS REQUESTS
NEWS@POZ.COM (GUTIERREZ) JOAN LOBIS BROWN; (EYE ILLUSTRATION)THINKSTOCK
SUBSCRIPTIONS
HTTP://ORDER.POZ.COM UNITED STATES: 800.973.2376 CANADA, MEXICO AND OVERSEAS: 212.242.2163 SUBSCRIPTION@POZ.COM SEND LETTERS TO: POZ, 462 7TH AVE., 19TH FL. NEW YORK, NY 10018 FAX: 212.675.8505 EMAIL: EDITOR-IN-CHIEF@POZ.COM OR GO TO POZ.COM JOIN POZ
POZ.COM/FACEBOOK
POZ.COM/INSTAGRAM
POZ.COM/TWITTER
POZ.COM/TUMBLR
In Your Eyes
I
HAVE ALWAYS WANTED TO draw well. Although the best I’ve ever gotten is stick figures, I very much enjoy the arts. Having made my living for decades dealing in words, I admire how artists can use sight and sound to convey ideas and feelings that escape words. The power of art to inspire—and even heal—was wielded quite well during the 1980s and ’90s at the heights of the AIDS crisis. The efforts of HIV activists were arguably enhanced by the widespread adoption of the pink triangle and the red ribbon as symbols of the fight. Countless artists during those years were lost to AIDS. The absence of an entire generation of painters, photographers, actors, dancers, singers, designers and other creative people is just too large to comprehend. As they left us, the once seemingly omnipresent voices of artists in the HIV fight grew quieter. This distancing has manifested not only in the art itself, but also in institutional support from the arts for HIV/AIDS. However, the partnership between the arts and the fight against the virus is far from dead. This special issue on art and wellness explores the connections between creativity and health. Artist and long-term survivor Eric Rhein embodies these connections. His ongoing Leaves piece—a collection started in 1996 of leaf portraits memorializing over 200 people lost to the virus—combines memory and activism, which hopefully provides healing in the process for Rhein and the rest of us. The 2012 death of activist Spencer Cox was a reminder for many long-term survivors across the country of the ongoing costs of their collective achievements. In response, Rhein created a leaf for Cox. That leaf graces our cover. Go to page 40 to read more about how Rhein continues to expand his art. The Cox leaf also will be one of the many attractions of Art AIDS America, a traveling
exhibition a decade in the making of more than 100 pieces by well-known artists, as well as by regional and community artists. The show kicks off in June. Go to page 48 for more about the exhibition, including locations. Poet and songwriter Mary Bowman uses words to paint pictures. Born with HIV 26 years ago, she is able to share her insights as a long-term survivor with young and old alike. In addition to her poetry, Bowman also has recorded her first album. Go to page 44 for more on her art and to read one of her poems. Photographer Duane Cramer lost his father to AIDS 10 years before testing HIV positive himself in 1996. He uses the lessons those events have taught him in his photography, especially in his work with several HIV/AIDS awareness campaigns over the years. Go to page 10 for our Q&A with Cramer. The World AIDS Museum, located in Wilton Manors, Florida, officially opened its doors this past December. Go to page 56 to find out how director of operations Ed Sparan and his team are making HIV history accessible to all.
ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF editor-in-chief@poz.com
Want to read more from Oriol? Follow him on Twitter @oriolgutierrez and check out blogs.poz.com/oriol.
poz.com APRIL/MAY 2015 POZ 5
FEEDBACK
Have an opinion about this month’s POZ? Comment on a specific story on poz.com, post a general comment via poz.com/talkouts, or send a letter to POZ, 462 Seventh Ave., Floor 19, New York, NY 10018. You can also head to our social media pages at facebook.com/pozmagazine, pozmagazine.tumblr.com, or @pozmagazine on Twitter.
food on the table, pay rent, afford transportation, etc., then medical services will go to the back burner. Without Ryan White funding, we wouldn’t have been able to procure basic needs, which in turn enabled us to actively pursue medical services for HIV-positive children and babies.
IS CRIMINALIZING HIV EVER A GOOD IDEA? BY BENJAMIN RYAN
XIOMARA SEL-CAB
OUT TO DRY
THE GREAT DEBATE ON CRIMINALIZATION
Is criminalizing HIV ever a good idea? That’s the question Benjamin Ryan posed in the POZ magazine feature “Burden of Proof” (January/February 2015). Turns out, battles over who’s responsible for what, in terms of HIV transmission, are still waging. I was lied to when I asked another man specifically if he “had anything to declare.” I tested positive soon after. I had never had unsafe sex before. He just didn’t want to use a condom. To me, that seems like criminal behavior. It didn’t have to be HIV; it could have been any sexually transmitted infection (STI): It’s assault if the other person knows it and lies about it. The laws should cover all STIs. JERRY, SAN DIEGO
I remember fighting against forced testing in the late ’80s in Washington. My argument was and still is: personal responsibility. If you don’t want HIV, wear protection or abstain. You cannot blame anyone but yourself if you get it. SCOTT RICCI
No law is black-and-white. There also needs to be proof of intent. If someone intentionally targets vulnerable people with the malicious intent of infecting them, I’d like to be the first to have five minutes alone in a room with that person. Yes, we are all responsible for protecting
ourselves, but the whole reason there is still HIV outreach and education is because of ignorance and misinformation. I’m appalled that people with HIV are being incarcerated not because they infected someone they had sex with, but simply because they didn’t inform them. We are demonized. VINCENT BLAINE
#RYANWHITEWORKS
The POZ.com Newsfeed highlighted this new campaign by the HIV Prevention Justice Alliance. “Real Stories of How the Ryan White Program Helps Folks With HIV” (January 26, 2015) lets some of the program’s beneficiaries tell you in their own words.
Just weeks before he died of AIDS-related illness in 1985, film icon Rock Hudson asked the White House to help him cut through red tape to see a doctor in France. POZ.com’s Newsfeed post “Why Nancy Reagan Refused a Dying Rock Hudson’s Plea” (February 4, 2015) went over Buzzfeed’s report that unearthed the tragic story. It’s always time for Nancy to apologize to the HIV and gay communities, for ignoring thousands of people dying
from a disease that she and her husband wanted nothing to do with. ERIC BRUN-SANGLARD
What can you expect from people like that? Reagan did not even say the words “HIV/ AIDS” until the end of his second term. By the time he did, the U.S. had 41,027 known deaths and another 71,176 known HIV/AIDS cases. No thanks to the Reagans, but I am still here after all of these years. TED
This would be another example of Reagan’s failures to be compassionate and intelligent. He also “released” thousands of mentally ill persons to the streets when he backed the closing of huge numbers of mental health facilities. All that man ever “trickled down” was suffering for so many innocent people! VIRPILOSUS
TWITTER LOVES POZ STORIES
Together, our stories can change the way the world sees HIV/AIDS. Lately, we’ve started tweeting out people’s personal tales of how they’ve overcome the virus. Search for them under #POZStories.
Ryan White helped me too. I have been dealing with HIV since my diagnosis in August 1990. I developed severe dental issues, and the program helped me get everything taken care of. I lost my husband and almost all of my friends. That little boy has saved so many lives, including mine. Please, please support the Ryan White Care Act. PATRICK ARMSTRONG, DALLAS
It lets me afford my medication so I can keep the virus suppressed and stop transmission. DANIEL ANGELIS
I was a Ryan White Title II pediatric case manager. The pediatrician I worked for believed that if you can’t put
poz.com APRIL/MAY 2015 POZ 9
POZ Q+A
BY ORIOL R. GUTIERREZ JR.
Photographer and activist Duane Cramer aims to help reduce stigma and increase healing through his art.
D
UANE CRAMER HAS PHOTOGRAPHED A WHO’S WHO OVER the years of politicians, actors and other celebrities. In that time, he’s also been able to apply his photography skills to several social marketing campaigns, allowing him to combine his art with his activism, which he calls “artivism.” His passion for artivism is deep-seated. Cramer lost his father to AIDS in 1986. Joe Cramer had a PhD in accounting and was an associate dean at Howard University, but HIV stigma led Duane and his family to initially tell people Joe died of cancer. In 1996, Duane tested HIV positive. Losing his father to AIDS and living with HIV have made Cramer especially dedicated to pursuing his passions and sharing them with the world. As a result, he has served in many related activist roles, including as a spokesperson for “I Design,” an HIV/AIDS awareness campaign sponsored by Merck. Here, Cramer reflects on his personal and professional experiences as he shares his thoughts on how art enhances wellness, how artivism fights stigma and how aging with the virus expands his appreciation of life. When did you develop an interest in photography?
When I was very young. I grew up in a family of a lot of artists. There were photographs everywhere of my ancestors dating back to the early 1800s. I developed a kind of intense love of these images. My family impressed upon me the importance of documenting lives. Photography is the way to document that we were here. My family also impressed upon me the value of education. I have a business degree from the University of Southern California, but I did not study photography
10 POZ APRIL/MAY 2015 poz.com
formally. I worked at Xerox Corporation in sales and marketing for almost two decades, but I was also taking photographs. I’d been doing photography since high school. I also got into activism at Xerox by heading up its community involvement project, sponsoring different causes like breast cancer or AIDS Walks. The company eventually awarded me a full year paid social service leave of absence. It’s an honor granted to just a few people every year, which the company has been doing for years. For that year, I worked with the AIDS Memorial Quilt, taking it to middle schools and high schools around the country with a focus on black and Latino populations. The quilt is the largest grassroots art project in the world. I was on the board of directors. I made a panel for my father that includes a photograph of him. I went back to Xerox for a few years, but I soon realized that I had to leave to pursue my artistic passions. Becoming HI V positive made me realize how
ALL IMAGES: COURTESY OF DUANE CRAMER
POSITIVE PURPOSE
Awareness campaigns photographed by Cramer, clockwise from left: from GMHC and Iris House for HIV testing among women and girls; from the San Francisco Department of Public Health promoting status sorting for prevention; part of the Greater Than AIDS campaign from the U.S. Centers for Disease Control and Prevention (CDC) and the Black AIDS Institute; from the San Francisco AIDS Foundation; and from the CDC encouraging testing for men of color
precious life really is, and how precious each person is. It made me focus on how could I make the biggest impact, which for me is taking photographs that cause people to take action. What does “artivism” mean to you?
For me, artivism is where an art form also has the ability to create a lot of buzz, energy, possibly controversy, positive action—a call to action, really. So, for example, let’s take a campaign like “Testing Makes Us Stronger,” the first campaign by the Centers for Disease Control and Prevention (CDC) targeting black gay men to get tested for HIV. That campaign uses beautiful art with a variety of people with different looks, sizes and colors, as well as different representations of masculinity and femininity. Doing that can create dialog and stir up emotions, both positive and negative. We’re going for a visceral reaction from people to cause them to act, using art to do more than entertain. Many of the campaigns that I’ve been involved with are pretty edgy. It’s important to create that kind of buzz, particularly in social marketing campaigns, because generally the budgets aren’t that high, so you’ve got to figure out a way to get more press attention. Artivism is one way to get that done. How can art fight stigma?
First, creating art strengthens the creator of the art. It helps put some starch in their back. It helps them create something that they’re going to share to make an impact on other people, which fights stigma. Art gives life to people. It gave me purpose. I can always go back to that feeling. Second, art itself is healing. In the past, I used to spend my time doing things that weren’t as productive or meaningful. After I became HIV positive, I realized that art could be therapeutic for me. It’s a channel for me to focus this powerful energy in a positive way, which helps me fight stigma. You’re a long-term survivor. What has that taught you about aging with HIV?
Being over 50 years old, I definitely fall into the current demographics of the
disease. More than half of the people living with HIV in the United States in 2015 are over 50 years old. So, you’ve got to take a look at how aging is affecting our population. Particularly, you’ve got to address long-term survivors. I’ve found in doing my work and talking to people that so many longterm survivors have become fatigued; some of them have stopped taking their meds completely because they’re just sick of it, and in a very short period of time, some of them aren’t here with us anymore. Thankfully, there are increasingly more support groups popping up around the country. In San Francisco, where I live, one example is Let’s Kick ASS [AIDS Survivor Syndrome], which facilitates people getting together to talk about these issues. I
Duane Cramer
the “Testing Makes Us Stronger” campaign from the CDC. We’re releasing a new series of images for the campaign. We’ll be going to various black gay pride events nationwide to do outreach and photo shoots. There also will be a social media component. It’s always exciting to get people engaged. Also connected to “Testing Makes Us Stronger,” we’ve completed a related public service announcement directed by [Noah’s Arc creator] Patrik-Ian Polk. I was director of still photography. We photographed some of the women from Real Housewives of Atlanta for the PSA, which should come out this year. What excites you about photography?
Every single picture that I take of every person, I want that to be the absolutely
“Becoming HIV positive made me realize how precious life really is, and how precious each person is.”
guess the silver lining in all this is that there is an aging HIV-positive population figuring out ways to age gracefully and healthfully. Tell us about your upcoming projects.
In addition to my ongoing work as a freelance photographer for various projects, I’m continuing as a spokesperson for “I Design,” which seeks to empower people living with HIV/AIDS to tailor their treatment plans. The campaign also includes Mondo Guerra of Project Runway and music promoter Maria Davis as spokespeople. It offers a conversation checklist for you and your doctor, as well as desktop and mobile apps to track your health. I’m also continuing my work with
best image of that person. I want them to feel amazing when they see it; I want other people to look at it and go, “Wow, they look good—they look like they’re moving in the right direction!” That attitude can rub off on other people. There’s a big trickle-down effect as to the positive and healing aspects of what art can do. That’s why it’s so great there are so many different creative people who can appeal to different people in different ways. Creating art for awareness campaigns requires a lot of thought to work with subjects to create something that’s going to be powerful. I always tell people, I can’t do anything on my own. I appreciate people saying nice things about my work, but it’s a collaboration. ■
poz.com APRIL/MAY 2015 POZ 11
POZ PLANET
BY TRENTON STRAUBE
From left: George Hodgman’s mom, Betty, of Paris, Missouri; Sergei Boissier’s socialite mother, Dollsie; and Jamie Brickhouse with his Mama Jean
MOMMIES DEAREST Bettyville George Hodgman may not be HIV positive, but he has been living with the virus in every other sense. A former Vanity Fair editor who paints himself as an awkward yet likeable loner, Hodgman began his career in Manhattan in the early ’80s, “the beginning of AIDS, wartime.” Although we glimpse telling vignettes of decadent gay Fire Island and traumatic HIV-related episodes, Bettyville unfolds from Paris, Missouri, where Hodgman has returned to care for his ailing mother, Betty. His rural Midwest is less Sordid Lives and more stoic lives. Betty cannot bring herself to speak of his life. Everything goes unsaid. Lucky for us, though, nothing goes unwritten. Betty may be the much-adored subject, but the real stars here are Hodgman’s wry prose and compassionate insights. He says so much with so little. At once humorous and heartbreaking, this gem of a story envelops the reader with all the love and tenderness we expect from Mom.
16 POZ APRIL/MAY 2015 poz.com
Damage Control A counselor specializing in HIV and LGBT issues, Sergei Boissier is himself gay and living with the virus. Knowing this as you read his Damage Control: A Memoir of Outlandish Privilege, Loss and Redemption, you might wonder, “Where the heck’s the HIV?” (It pops up occasionally, along with substance abuse, depression and a lover who succumbs to AIDS.) Then again, how dare a virus even think of sharing the spotlight with the force of nature that is his mother, known simply as Dollsie. Imagine the self-centered star of a Real Housewives of Gstaad reality show and you’d glimpse this jet-setting glamazon of a mom. Alas, Dollsie’s neediness and neglect damage her son in ways that play out into his adulthood, even as he attempts to make peace and move forward. The memoir offers a peek into an exclusive world of wealth, but it’s when we access the interior lives of Boissier and Dollsie that we experience true privilege.
Dangerous When Wet Trouble awaits the son whose mother declares, “It’s better you’re gay. I could never share you with another woman.” How does one begin to cope with the overbearing, outrageous (and often lovable) Mama Jean, the self-styled Joan Collins of Beaumont, Texas? Jamie Brickhouse seeks solace in Joan Crawford movies, the Manhattan publishing world and endless booze and boys. The resulting descent into alcoholism and its 12-Steps resolution may feel like a predictable story arc of addiction, but Brickhouse is an energetic, witty narrator with a très gay eye for detail who keeps it fresh—at least on the surface. It’s very telling that we learn, practically as an aside, that he’s HIV positive and has been hiding his status. In fact, the virus is rarely mentioned. “I take my pill once day and have never been sick,” he says near the book’s end, adding: “Managing the shame and stigma of it is another story.” Let’s hope he decides to tell that story too.
(BETTY) COURTESY OF GEORGE HODGMAN; (DOLLSIE) COURTESY OF SERGEI BOISSIER; (MAMA JEAN) COURTESY OF JAMIE BRICKHOUSE
HIV-related memoirs explore the bond between gay sons and strong mothers.
Hot Dates / May 18: HIV Vaccine Awareness Day / May 19:
ENDING THE EPIDEMIC By Myles Mellor / Edited by Oriol R. Gutierrez Jr. * Clues with asterisks are related
30. “Show Me” state (abbr.) 31. Institute that researches infectious diseases (abbr.) 32. Type of blood cell destroyed by HIV 34. Blood type 35. A unit of radioactive activity (abbr.) 37. Funding source (abbr.) 38. This type of cure could stop HIV from harming you
DOWN 1.
2. 3. 4. 5. 6. 7. 9. 10. 12. 14. 17. 18. 19. 20. 23. 24. 26. 27.
Answers on page 23
ACROSS
* His full name Place where HIV accumulates and persists (two words) 11. Quantity of antibody 13. AVAC advocates for developing this
(HARING ART) © KEITH HARING FOUNDATION
1. 8.
15. 16. 18. 21. 22 25. 28.
Delete Anti____viral Medication applied on the skin Digestive enzyme * His doctor Gets you angry * He is the ____ ____ cured of HIV
28. 29. 32. 33. 35. 36.
Dallas Buyers Club state (abbr.) Damp Hot or cold drink Amer. Med. ____ (abbr.) * His nickname Atmospheric layer Care provider Evaluate This type of cure could eradicate HIV from the body Origins In, on or near Peak Belief in someone There could be two kinds (10 down and 38 across) ____ Montagnier (he co-discovered HIV) To do it is human Before (prefix) Your body, mostly Old reference to effective HIV treatment (abbr.) Disappear gradually 20 down won this prize for his co-discovery Succeed Person (suffix) Copper symbol Professional designation for 7 down (abbr.)
Forever Keith Haring POZ couldn’t put out an art issue without mentioning Keith Haring (see pages 24 and 48). Though the beloved activist and star of street art died in 1990, his work remains current and inspiring. Why? Julia Gruen, executive director of the Keith Haring Foundation, offers one reason: “Twenty-five years after his death at 31 from AIDS-related illnesses, most of the issues that plagued the world during his brief lifetime are regrettably still with us. Thus, his work remains of continued relevance and (we hope) continues to bring enlightenment to all audiences.”
National Asian & Pacific Islander HIV/AIDS Awareness Day
poz.com APRIL/MAY 2015 POZ 17
POZ PLANET
BY TRENTON STRAUBE
SOUTHERN SERENITY
Project Lazarus offers housing and wellness in New Orleans. Project Lazarus began 30 years ago as an AIDS hospice. Some of its buildings, located near the famed French Quarter in New Orleans, date back to the 1880s. But the services found at this transitional housing and wellness center are modern and forward-thinking. Sure, the main focus is to help HIVpositive clients get back on their feet and enjoy independent, healthy lives. Project Lazarus has a total of 23 beds available for 6 to 12 months in two main facilities. They’re always full. Clients fit a variety of demographics, though a growing number are young (18 or older) and African
American, and most are also dealing with addiction and homelessness. While helping people get sober and on regular HIV treatment, Project Lazarus teaches them basic life skills through its Wellness University. What’s more, folks in the local HIV community living off-site can participate in the substance abuse programs. But that’s not the most unique aspect of Project Lazarus. “Sustainability is very important to us,” explains interim executive director Steve Rivera. “Our facilities director does a fabulous job of keeping us all abreast of what’s new and useful.” Such as? Becoming self-sufficient in
THE ART OF MAKING LOVE Design your own condoms!
Thanks to Graphic Armor, condom use just got more creative. The company offers latex condoms and wrappers with customized designs printed right on the rubbers and packages. You simply upload images, slogans and designs on GraphicArmor.com, and then your personalized prophylactics will be ready for business. A best-seller is the Star Wars–themed “I will not be your father” condom. “Offering choices and even personalized packaging with logos or humor helps to increase condom usage,” says Adam Glickman, co-owner and managing partner. He should know—nearly 25 years ago he founded Condomania, the country’s first condom store. Graphic Armor condoms are FDA-approved, and the company promises the nontoxic printing will not rub off in normal use. Prices range from three bucks per condom to 39 cents, depending on the quantity. Which leaves one question: How will you make your mark?
22 POZ APRIL/MAY 2015 poz.com
hurricane season, gathering fresh eggs from their own chickens, and maintaining an organic vegetable garden that’s watered with collected rainwater. Clients pitch in with all the work. “They love it,” Rivera says. “It promotes life and regeneration.” And, he adds, it focuses their attention on other things besides drugs—which can be a challenge in a city that celebrates its decadence. Project Lazarus, with its fountains, butterfly gardens and ponds, offers a safe haven. “Clients learn to search out serenity,” Rivera says, “and to choose what supports the life they want.”
(CRAWFISH AND GARDENS) COURTESY OF PROJECT LAZARUS; (CONDOMS) COURTESY OF GRAPHIC ARMOR
From left: enjoying a crawfish communal meal and gardening
(NGUYEN AND HUE) COURTESY OF RED FLAMBOYANT; (CUMMING) COURTESY OF GLAAD AND GMHC
LARRY KRAMER’S BIG DAY Larry Kramer’s making another comeback. In April, the ACT UP founder and Normal Heart playwright sees the release of The American People, his 40-years-inthe-making novel that reimagines U.S. history through a gay- and HIV-centric lens. This nearly 800-page tome is Volume 1, titled Search for My Heart. It promises “the story of one nation under a plague, contaminated by
greed, hate, and disease and host to transcendent acts of courage and kindness.” And don’t miss former ACT UP member Jean Carlomusto’s documentary Larry Kramer: In Love & Anger, which offers a surprising glimpse at the irascible icon. “He’s very shy,” she says, “and he’s very sweet—just don’t piss him off!” HBO will air the film this June in honor of Kramer’s 80th birthday.
HOW TO CHANGE THE FDA GAY BLOOD DONOR POLICY
Alan Cumming
Until this year, the Food and Drug Administration banned men from donating blood if they had ever had sex with another man, even once, since 1977. The new policy lets gay and bisexual men donate blood as long as they’ve not had sex for a year. But this still discriminates, say LGBT media watchdog group GLAAD and Gay Men’s Health Crisis (GMHC), so they enlisted actor Alan Cumming to get the word out via a “Celibacy Challenge” campaign. Starring as the head of the Department of Sexual Abstinence, Cumming says in the video: “If you’re gay and want to save lives [by donating blood], the FDA will let you, you just can’t have sex for an entire year…. Introducing: the Celibacy Challenge! To help you abstain from any naughty temptation, here are some fully approved activities guaranteed to make your year without sex fly by.” Cut to: a montage of faux-sexual activities such as cleaning rifles and drilling lumber. Then Cumming returns. “Or there’s another option. Sign our petition and share this video to pressure the FDA to change its questionnaire so donors are screened based on their exposure to risk and not their sexual orientation.”
Don Nguyen and Pham Thi Hue
MEET THE RED FLAMBOYANT WARRIORS Red Flamboyant is Don Nguyen’s play about “female warriors in AIDS-stricken Vietnam.” Debuting April 24 in New York City, the ambitious show includes aerial feats and water puppetry, while also referencing the culture’s ancient female fighters. The play is based on the Red Flamboyant support group, composed of HIV-positive women in Vietnam and led by Pham Thi Hue. She’s still running the group and trying to comfort those shunned by the public and their own families. A modern-day warrior, indeed.
Solution to puzzle on page 17
poz.com APRIL/MAY 2015 POZ 23
VOICES
BLOGS AND OPINIONS FROM POZ.COM
From the exhibit (clockwise from left): “African Pietà” (2013), digital photograph on plexiglass, by Clecio Lira; “Masculine Kiss” (2011), acrylic on paper (cropped), by Shungaboy; “Keith Haring” (2010), screen print (cropped), by Shepard Fairey
LOVE AND PASSION
F
or the past six years, Gay Men’s Health Crisis (GMHC) has been presenting Art & AIDS exhibitions, free to the public, in partnership with the Leslie-Lohman Museum of Gay and Lesbian Art in New York. This year’s show, titled Art & AIDS: Amor y Pasión (Love and Passion), was curated by David Livingston and me—we are both GMHC clients and volunteers. The show, which ran from January 22 to February 1, is an outcome of the weekly art classes offered by GMHC’s Volunteer, Work and Wellness Center and also of the artists who’ve come to GMHC for support after their own diagnosis. It featured over 45 artists who are GMHC clients displaying their talent and emotions through painting, drawing, photography and sculpture. The show also honored Keith Haring for his talent and legacy, marking the 25th anniversary of his death from AIDS complications on February 16, 1990. GMHC and the museum collaborated with the Keith Haring Foundation to display his “Bad Boys” series. The silkscreens, created in 1986, display Haring’s explicit homoerotic expression and pride in his sexual orientation at a time when many people were being diagnosed and
24 POZ APRIL/MAY 2015 poz.com
dying. The Keith Haring Foundation has also allowed us to display a black-andwhite portrait of the artist taken in 1984 by his friend Robert Mapplethorpe, who died of AIDS complications in 1989. In conjunction with the exhibit, the museum hosted two additional free events for the general public. LeslieLohman presented “Art AIDS America,” a conversation with Jonathan David Katz, a co-curator of a national museum exhibition showcasing 30 years of art responding to the U.S. AIDS epidemic. The show, also titled Art AIDS America, opens June 2015 and runs through 2017 nationwide. [Editor’s note: Go to page 48 for more about Art AIDS America.] The Leslie-Lohman Museum also hosted a film screening and discussion on the documentary The Universe of Keith Haring, an intimate portrait of the world-renowned artist whose mantra was that “art is for everyone!” The 90-minute film is an intimate exploration of the background and career of one of the most popular and significant artists of the 20th century. Julia Gruen, executive director of the Keith Haring Foundation, led a postscreening discussion with the audience. The artist launched the Keith Haring Foundation in November 1989, months
before his death. Its mission is to support nonprofit organizations that assist children, as well as organizations that are involved in HIV/AIDS-related education, research and care. At the opening reception of Art & AIDS, members of the Imperial Court of New York, a group that raises funds for community-based organizations and that’s famous for its drag queens, volunteered to greet the guests. The evening was a smashing success, filling the space to capacity. The festive audience mingled as they discussed their favorite pieces; others kept busy buying art, which is well-priced—plus, 100 percent of the sales goes to the artists, allowing them to increase their financial independence, which is important for those on a limited income. What’s more, the artists are now able to participate in other shows, as most galleries require artists to have been part of a show before hosting their work. This show also sent a message that AIDS is not over and that stigma is something people living with the virus still experience. In addition, it gave the artists a chance to show that their art celebrates life, history, beauty, sexuality and spirituality as it pushes struggle with optimism, love and passion. ■
COURTESY OF GMHC
In this edited excerpt from an opinion piece titled “Art & AIDS: Amor y Pasión,” GMHC board member Osvaldo Perdomo recaps an exhibition honoring HIV-positive artists, as well as the life and legacy of Keith Haring.
SEROZERO
APR/MAY 2015
Two Pills Saved My Life. Two Shots Could Have Saved His. By Kevin Cummines
I HAD A headache on September 19, 2012. It was
meningitis would steal my future from me. I never annoying, an added hurdle to the grind of my week. imagined meningitis would kill him. I was annoyed at Kyle, my boyfriend, because he The New York City Department of Health and probably gave me the flu. That’s what we thought Mental Hygiene sprung into action after Kyle’s he was battling. We avoided each other that week. autopsy. Within an hour I was treated for the bacteria He was sick, and I was music directing a show that that killed him. Two pills. Eight dollars. One dose. weekend. An actor and playwright, Kyle also had So cheap, my insurance wasn’t even bothered. We his own shows in development. Neither of us had time treated my daughter as well, just to be safe. But as the to be sick. weeks passed, the casualties rose from this particular When Kyle’s symptoms became much more severe, strain of meningitis, which killed within three days of I toyed with forcing him to go to the the onset of symptoms, far faster than hospital. Something clearly wasn’t normal, and untreatable for most once right, but I decided to give it one more symptoms began. day. Kyle was stubborn, and I didn’t The reports were conflicting all over have that fight in me. the media. But I watched as man after Kyle died that night. I was man was lost from our community, as potentially next. the disease spread beyond gay men, to We were sero-discordant. He broke the West Coast, through colleges, and my heart a few times because of it. He beyond. I watched family after family worried about hurting me, being unable live the pain I lived, the pain Kyle’s to commit. He worried about giving friends, families, and business partner me HIV. He worried about everything lived. I watched an easily-preventable, and said nothing. That’s how he was. I easily-cured tragedy unfold — easily never worried. I knew he was the man preventable because a vaccine could for me the first time I saw him. Four wipe the danger away with two doses. and a half years and many break-ups The vaccine is inexpensive, often Kyle Spidle after we met, we were back together free. One shot if you’re HIV-negative, and stronger than ever. I asked him to marry me, two if you’re positive. No side effects for most. and he said yes. I imagined an amazing life together: Between fits of collapsing in tears as I continued artistic, impoverished, kinky, frustrating, playful, rare to process Kyle’s death, I told everyone I knew to times of quiet…for better or worse, I was ready. He get vaccinated. Yet, I waited nearly a year to be was a giant bundle of awesome. He was indomitable. vaccinated, hoping something would take me…I His personality was massive, his presence powerful. wanted to be where Kyle was. That’s all I ever wanted He was my love, my hero, the man to join me in to begin with. I wanted to bask in his smile again. I raising my daughter, the man I would support until wanted to stare back into those eyes, the color of grass my dying day. with flecks of brass, more so in his right eye. I wanted Kyle’s viral load was undetectable. He was the the unrealistic desires of a grieving man. But I took healthiest person I knew. It never crossed my mind the shot. I had no side effects. I felt no different after to police our aches and pains. I never imagined receiving the vaccine.
Well, that’s a lie. I felt angry. Angry for not knowing the symptoms of meningitis. Angry for not better protecting my family and the man who was the center of it. Angry at the world, the country, social media, the government, the city, for not telling me the vaccine existed, for not requiring us to get it, for not showing me that a free shot with no side effects would save my life, my daughter’s life, my future husband’s life. I was angry that his business collapsed, that his business partner lost it all, that his life work would be left unrealized, that his parents were devastated, that his nephews would grow up without him. You name the injustice, I was angry about it. I was angry that two pills might have saved his life, and two shots in the arm could have prevented all of this. This is your wake-up call. Get vaccinated. It’s easy. It’s cheap. It’s likely free or low cost from most clinics and departments of health. It’s the right thing to do to protect yourself and those you love. If you are a legislator, this is also your call. This is life or death for your constituents. My life was saved because New York City knew what to do. Call your representatives because we need public policy to address this, and
we need it now. The vaccine is cheap and available. Two and a half years into this whole widower business, I’m ready to fight for my people. Nobody should have to suffer as we have. Even today, I imagine a life with Kyle. I imagine working through his mood swings, his fears, his failures. I remember how infuriating he could be, how ridiculous his expectations could get, how closed he would become at the slightest sign of conflict. I imagine still feeling inadequate next to his devastating beauty, and learning to accept that he loved me even though I didn’t deserve it. I imagine teaching him to express his fears to my face. I imagine us going through what every couple goes through heading towards the twilight of old age, a twilight we’ll never realize. I imagine the man I loved so much beside me forever. I remember the best of times, his head on my chest as he slept, or the way he smiled at me when nobody was looking. I remember how his body felt in my arms. I still feel the true and honest love I always felt for him. Two pills saved my life. Two shots could have saved his. ■
Wait, What? Police Can Arrest You Simply for Having Condoms in Your Pocket? By Chelsea Miller, Community Coordinator, GMHC
THE TRAGIC DEATHS of Mike Brown and Eric Garner
captured headlines around the world and ignited a movement against aggressive and discriminatory policing practices. In New York City, people are often illegally stopped, frisked, and arrested on suspicion of prostitution charges for merely possessing condoms. The New York Police Department (NYPD) employs a “condoms as evidence” policy that disproportionately affects youth who are lesbian, gay, bisexual and transgender (LGBT), especially youth of color, and who are living with or at high risk for HIV and AIDS. In fact, New York City (NYC) spends more than $1 million a year to distribute free condoms, while the NYPD concurrently criminalizes and confiscates them. The condoms as evidence policy jeopardizes the use of the most basic and effective tool to prevent HIV infection. It also not only threatens New York Governor Andrew Cuomo’s Plan to End AIDS by 2020, but also the National HIV/AIDS Strategy.
Policies at the intersection of racism, criminal justice, and HIV, including condoms as evidence, further endanger the health of black men. Black men who have sex with men (MSM), particularly youth ages 13 to 29, have the highest rates of new HIV infections in the United States. A growing body of research shows that stop and frisk disproportionately targets communities of color. For example, in NYC black and Latino residents comprised up to 90 percent of people stopped by the NYPD from 2002 to 2011. How are police able to identify condom carriers in the first place? In New York and throughout the country, law enforcement unconstitutionally “stop and frisk” “suspicious persons.” Law enforcement should only “stop” a person when they reasonably suspect that a person has committed or is about to commit a crime. A person can only be frisked, or “patted down,” when officers reasonably fear for their safety. On March 2, New York Police Commissioner contiued on page 4
2
GMHC APRIL/MAY 2015
I Love My Boo By Kelsey Louie, CEO, GMHC
WITH THE UPCOMING U.S. Supreme Court decision
on same-sex marriage and nationwide protests about violence against African American men, public discourse about racism and homophobia has reached a tipping point in this country. Both continue to drive the HIV epidemic across the nation. In fact, in New York City African American and Latino men and women comprise 75 percent of new HIV infections, and of those, over half are among gay and bisexual men. To combat the epidemic in populations hardest hit by HIV, homophobia, and racism, GMHC first launched “I Love My Boo” in 2010, a prevention campaign that celebrates positive images of young gay men of color. Instead of presenting hyper-sexualized gay relationships and unrealistic images of chiseled bodies, I Love My Boo features real young men focused on the beauty of love and intimacy.
Originally featured in the bathrooms of gay bars, I Love My Boo was re-launched on December 15, 2014. With over 270 posters in subway stations throughout New York City, it was seen by approximately 1.6 million people. Now located in the heteronormative public sphere, the new I Love My Boo directly challenges homophobia and asks the public to critically think about love and support across racial and sexual orientation boundaries. Since the launch of the new campaign, many posters were vandalized and defaced with derogatory and homophobic language. More importantly, while there has been hate, there has also been overwhelming support. I Love My Boo posters has fostered muchneeded, public discussion about homophobia and racism in New York City and around the country. Even more essential, thousands of young gay and bisexual men of color have seen themselves reflected in messages supporting their health, well-being, and relationships. ■
Left: Original “I Love My Boo” subway poster. Right and below: Examples of vandalized posters.
GMHC.ORG
3
Wait, What? contiued from page 2
Bill Bratton circulated a memo to Police Command ordering federal court mandated changes to its unconstitutional stop and frisk policies. Nationwide, Human Rights Watch found that these aggressive policing practices in four major U.S. cities, including NYC, actually fuel the HIV and AIDS epidemic based on how the NYPD inhibits outreach workers who distribute condoms by charging them with prostitution related offenses. Condoms are one of the most reliable, accessible, and inexpensive HIV-prevention tools. People who need them most shouldn’t leave their latex behind to avoid being prosecuted under false pretense for prostitution-related offenses. Marc Antonio is a member of the Action Center at Gay Men’s Health Crisis (GMHC) in NYC, a program that helps people living with HIV and AIDS raise awareness and advocate for improved quality of life for themselves and their communities. He identifies as a black MSM directly affected by this issue:
for men of color, like myself, we’re always questioning, “Am I going to be singled out? Am I going to be suspected of something or falsely accused?” It’s always on my mind. I do carry lots of condoms on me, not only for personal use, but also to give out to friends. I shouldn’t be accused of being a prostitute just because I have condoms. In 2014, the NYPD revised its policies of confiscating condoms in some prostitution-related cases. This is a small victory, but it does not go far enough. This policy has a chilling effect that ultimately harms those most at risk for HIV — black MSM. The ultimate solution is legislation that completely eliminates the use of condoms as evidence. Carrying condoms should never result in harassment, arrest, or even criminal charges. The only evidence that having condoms in your pocket should provide is that you’re doing the right thing to protect your own, and the public’s, health. ■
You know, when white citizens or white New Yorkers see the police, they feel at ease. But
Dr. Kahn vs. The Delivery Guy: My Personal Fight Against Mandatory Mail Order Pharmacy By Lyndel Urbano, Manager of Government Affairs
I GREW UP in a small town where my father would
fill every prescription at our local pharmacy. Our pharmacist, Dr. Kahn, was like a member of our family. He provided critical guidance on potential drug interactions, and he would even consult with my doctor about any new prescriptions before filling them just to make sure everyone was clear about my treatment. As a kid, I was more focused on the candy Dr. Kahn gave me every time my father brought me to the pharmacy. But looking back, I’m thankful that he gave so much to ensure my care was safe and effective, simply by doing the job he was trained to do. When I moved to New York City as an adult, I didn’t hesitate to go to a small, local pharmacy that my friends raved about. I loved my experience there. Just like Dr. Kahn, my new pharmacist would ask me about the medications I was taking, fill my prescriptions on time, and even deal with the convoluted health insurance bureaucracy on my behalf. The safety and peace of mind provided by my
4
SZ-031015_HY.indd 4
relationship with my pharmacist made living with a long-term, chronic illness so much easier. That all ended in January 2013 when my pharmacist told me that I needed to contact my insurance provider because it would no longer authorize him to refill my prescriptions. My insurer told me that I would either need to enroll in its mail order pharmacy, or pay the full cost for each prescription I filled at my local pharmacy. Given the cost of my medications, I had no choice. I consider myself “lucky” for even being warned about this change in advance. Many HIV-positive clients I work with at Gay Men’s Health Crisis (GMHC) have been blindsided and switched to mail order without any notice at all, causing them to go days or even weeks without their anti-retroviral medications. My right to privacy, especially about my health and medications, is paramount. When the mail order pharmacy representative I spoke to over the phone explained that I would have to use either UPS or
GMHC APRIL/MAY 2015
3/19/15 10:06 PM
FedEX to receive my medications, I was immensely concerned. When I explained that I lived in an apartment without a doorman who can receive the package, the representative coldly suggested that I either take the delivery day off from work, have the medications delivered at work, or have them delivered to my doctor’s office. None of those options were acceptable. It was not possible for me to take a day off from work every month just to receive my medications, and I should not have to choose between protecting my privacy and allowing someone in the mail room at my workplace to receive my personal packages, even if that was an option. Additionally, my doctor’s office would not accept deliveries on my behalf. Fortunately, after speaking to a mail order pharmacy supervisor I was given permission for my medications to be delivered to my mailbox by the U.S. Postal Service without requiring a signature. I breathed a sigh of relief. For the next two months, I called the mail order pharmacy to fill my prescriptions and they arrived on time. But whenever I asked about drug interactions, I was read scripted and incomplete responses over the phone by “specialists” who were unable to pronounce the names of my medications. On the third month, I received an orange slip in my mailbox asking for a signature for the delivery. As a result, I had to take time off from work to wait in line at the post office. The following month, I arrived home to my neighbor shaking a bag of medication in front of me and saying, “This arrived for you. The post office put it in my mailbox.” I was gripped with anxiety. Did she look in the bag? Is she going to tell anyone else about my illness? In response, I immediately requested an exemption from having to use the mail order pharmacy, but my request was rejected. I appealed. It was rejected. I appealed again and again for a total of three months, to no avail. From then on, every time I re-ordered my medications I constantly worried about protecting my privacy and needing to unnecessarily take more time off work. Recently, a GMHC client who is also being forced to use a mail order pharmacy mirrored my personal experience: All I ask is for some control over my own privacy, and who knows about my illness, and what medications I am taking. I would rather pick up the medications at a pharmacy. That way, I would have control over who sees my medications. On several occasions I have not
GMHC.ORG
received my medications on time, and twice, including this month, my medications were left in my neighbor’s mailbox. These experiences prompted me to contact the New York State Attorney General’s (AG) Health Care Bureau to request assistance for myself and the dozens of GMHC clients being affected by mandatory mail order. After I provided documentation of my appeals and rejections, the AG’s office successfully negotiated a one-year exception that allowed me to fill my prescriptions at my local pharmacy. Over the past few years, some GMHC clients have also had to take that extraordinary step to get short-term exceptions. Many others have not been so lucky. In September 2013, I read an article in POZ magazine that updated a story written by Larry Kramer about his mandatory mail order experience. It mentioned class action lawsuits filed by the patient advocacy group Consumer Watchdog in federal court in California against two insurers, United Health Care and Anthem. The lawsuit alleged that obligating people living with HIV or AIDS (PLWHA) to use mail order pharmacies was discriminatory. Eventually, Anthem and United agreed to a settlement that forced them to allow PLWHA to opt out of mandatory mail order, without acknowledging fault.
My insurer told me that I would either need to enroll in its mail order pharmacy, or pay the full cost for each prescription I filled at my local pharmacy. United now allows PLWHA to opt-out by submitting requests in the mail, over the phone, or online. Anthem, however, does not have a formal process and patients must call customer assistance to opt out. Despite some success with United and Anthem, many PLWHA who use other insurance providers are still being forced to use mail order pharmacies. Recently, a third insurer, Aetna, was also sued in federal court by Consumer Watchdog. The lawsuit alleges that Aetna’s Qualified Health Plans offered on California’s health exchange are discriminating against PLWHA.
5
SEROZERO EDITOR IN CHIEF: JASON CIANCIOTTO EDITOR: ANTHONY HAYES ASSISTANT EDITOR: LYNDEL URBANO ASSOCIATE EDITORS: DEMETRIUS THOMAS AND CHELSEA MILLER ART DIRECTOR: ADAM FREDERICKS GMHC SeroZero is published by GMHC, Inc. All rights reserved. Noncommercial reproduction is encouraged. GMHC SeroZero 446 West 33rd Street, New York, NY 10001 gmhc.org © 2015 Gay Men’s Health Crisis, Inc.
In response to the Anthem settlement, the New York State AG sent a letter to 15 major insurers asking them to also allow PLWHA to opt out of mandatory mail order. The U.S. Department of Health and Human Services (HHS) has also issued a final regulation that requires insurers, beginning in 2017, to offer alternatives to mail order pharmacies. However, that regulation allows the insurer to charge an extra fee to those who opt out. My one-year exemption from mandatory mail order will end soon, long before the new HHS regulation takes effect. Locally, I am helping to lead a broad coalition of patient interest groups in New York State fighting to pass a bipartisan bill that finally prohibits insurers from forcing patients to only use mail order pharmacies. Patients should have a choice. For some, mail order may be their best option, but that has not been my experience. I value having the choice and peace of mind that comes from working with my trusted, statelicensed, local pharmacist. I should not be forced to do anything that jeopardizes my privacy or health, and neither should anyone else. ■
30 YEARS AND STILL FIGHTING!
aidswalk.net 6
SIGN UP TODAY
212.807.WALK GMHC APRIL/MAY 2015
RESEARCH NOTES BY BENJAMIN RYAN
PREVENTION
ALL IMAGES: THINKSTOCK
Mapping PrEP “Hot Zones”
Targeting “hot zones” where the HIV epidemic is more severe and where the rate of sexual risk-taking is high is apparently a much more effective way to roll out the use of pre-exposure prophylaxis (PrEP) to prevent HIV. Researchers designed a computer model that mapped the varying rates of new HIV infections across South Africa and detected the hot zones. They used the model to project how the nation’s HIV infection rate would change if PrEP were promoted evenly throughout the nation or if it were targeted in the hot zones. The model suggests that, with the same number of PrEP users in each approach, the targeted strategy would prevent 40 percent more HIV cases than a blanket approach. The scientists say their model can be used to strategize PrEP delivery in other sub-Saharan African nations.
TREATMENT
Redefined Pharma Partnerships
Pharmaceutical companies Janssen and Gilead Sciences have been working together to develop new single-tablet regimens (STRs) to treat HIV, and they recently changed the terms of their ongoing collaborations. Janssen has pledged to conduct all further development of the STR containing Janssen’s Prezista (darunavir) and Gilead’s Tybost (cobicistat), Emtriva (emtricitabine) and the not-yet-approved tenofovir alafenamide fumarate (TAF). [An updated version of tenofovir disoproxil fumarate (TDF), TAF leads to less bone and kidney toxicity.] Janssen will also be responsible for the manufacturing, registration, distribution and commercialization of the STR if it is approved. In addition, the two companies intend to swap TAF for TDF in Complera (emtricitabine/ rilpivirine/TDF). Gilead will be in charge of the development and commercialization of the updated Complera in most countries, with Janssen heading up the commercialization in some others.
CURE
“Boosting” Killer Immune Cells
It’s possible to prime the immune system to kill the HIV-infected reservoir CD4 cells that frustrate cure attempts. Researchers drew immune cells and HIV-infected reservoir cells from 10 people who started treatment within three months of HIV infection (“early”) and 15 who started after (“late”). Scientists then looked at the “killer” CD8 immune cells in both groups. These cells are usually the body’s dominant force against infection. The CD8s of early treaters could seek out and destroy reservoir cells that had been brought out of their dormant state and made to replicate virus. This wasn’t the case for those treated late; almost all of the virus in their reservoir cells had mutated to the point that it could evade detection by typical CD8s. So the scientists took other kinds of CD8 cells that were able to detect, if not kill, the reservoir cells in the late treaters, and stimulated them with artificial elements representing various parts of the virus. These “boosted” CD8s successfully killed the HIV-infected reservoir cells in both a lab setting and in mice.
CONCERNS
Higher HIV Death Rates in the South
HIV hits the American South especially hard, according to an analysis of data from the Centers for Disease Control and Prevention. In nine Southern states—Alabama, Florida, Georgia, Louisiana, Mississippi, North and South Carolina, Tennessee and Texas—the 2011 HIV diagnosis rate was 24.5 per 100,000 people, compared with a national rate of 18 per 100,000 people. Eighty-five percent of Southerners diagnosed with HIV in 2003 and 2004 survived another five years, as did 73 percent of those diagnosed with AIDS—compared with national five-year survival rates of 86 percent and 77 percent, respectively. Researchers found that regional differences in demographics or HIV transmission risk levels did not explain the fact that the South had the highest death rate of any region. A likelier explanation is that poverty, lower education levels, lower insurance coverage levels, HIV stigma and racism all play a part in the disparity.
poz.com APRIL/MAY 2015 POZ 31
CARE AND TREATMENT BY BENJAMIN RYAN
DOES HIV HURT YOUR HEARING?
People living with HIV apparently have worse hearing than those who are HIV negative. Researchers tested the pure-tone hearing threshold levels in both ears of 396 men and women, a little more than half of whom were HIV positive, and who were 48 years old on average. The high- and low-frequency pure-tone averages in the better ears of the HIV-positive participants were a respective 18 and 12 percent higher than those of the HIV-negative participants. This means that the HIV-positive individuals needed slightly louder tones to register sounds across the frequency spectrum, indicating they have worse hearing. The findings remained the same even after the researchers accounted for CD4 count, viral load, antiretrovirals, sex, race, age, and noise exposure. The study’s lead author, Peter Torre III, PhD, an associate professor of audiology at San Diego State University, says he and his colleagues believe that the hearing loss is most likely the result of nerve damage. It is well known that HIV affects the central nervous system. “Since hearing loss is irreversible, it is important that individuals protect their hearing before a loss manifests itself,” Torre says. “Individuals with HIV should protect themselves in noisy environments, and also minimize their activities, if possible, in those noisy environments.”
32 POZ APRIL/MAY 2015 poz.com
People with HIV have a raised risk of heart attack, but they may greatly reduce or even wipe out this increased risk through antiretroviral (ARV) treatment and proper attention to other risk factors for cardiovascular disease (CVD). Researchers at Kaiser Permanente in California studied data on about 25,000 HIV-positive patients to compare their risk of CVD with a matched control group of just over 250,000 HIV-negative patients, and to see how the comparative risk between the two groups changed between 1996 and the beginning of the 2010s. After adjusting for various factors, the researchers found that, in 1996, the people living with HIV had an 80 percent increased risk of heart attack when compared with those not living with the virus. By the period of 2010 to 2011, both groups had the same risk of heart attack. The study’s lead author, Daniel B. Klein, MD, chief of infectious diseases for Kaiser Permanente San Leandro Medical Center, says that worries that HIV will lead to a heart attack “are no longer warranted if someone pays attention to his or her lifestyle and is on good treatment.” He adds, “One of the key points is that conventional risk reduction for heart disease—smoking cessation, cholesterol management, blood pressure management—are keys to the declining rate that we observed.”
(ALL IMAGES) THINKSTOCK; MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY
No More Excess Heart Attack Risk?
THE FIRST YEAR OF HIV INFECTION:
A WINDOW OF OPPORTUNITY People who start HIV treatment within a year of contracting the virus appear to have a better chance of refurbishing their immune systems than those whose treatment is delayed past that point. Researchers studied 1,119 people living with HIV whose records indicated an estimated date when they became HIV positive. They compared this group with a population of HIV-negative people, whose median CD4 count of about 900 led the researchers to establish 800 CD4s as the “normal” threshold. Thirty-eight percent of the HIV-positive people who started antiretrovirals (ARVs) within a year of contracting the virus saw their CD4 cells rise to normal levels, while 28 percent of those who started treatment later reached such a high CD4 count. When compared with the rest of the participants in the study, the HIV-positive individuals who began the study with more than 500 CD4s were twice as likely to develop a normal level of CD4s, and four times as likely to do so if they started ARVs with CD4s above 500. Notably, among the participants
(ALL IMAGES) THINKSTOCK
FDA APPROVES NEW HEP C REGIMEN
In December, the U.S. Food and Drug Administration (FDA) approved AbbVie’s interferon-free hepatitis C virus (HCV) regimen Viekira Pak to treat people with genotype 1 of the virus, including those coinfected with HIV. The Viekira Pak regimen consists of two kinds of pills. One is a combination tablet taken once daily that contains the antivirals ombitasvir and paritaprevir, as well as the HIV antiretroviral (ARV) ritonavir as a “boosting agent.” The other pill is the antiviral dasabuvir taken twice daily. People with genotype 1a, as well as those who have cirrhosis or have had a liver transplant, should take Viekira Pak with ribavirin. Treatment runs for 12 weeks, although certain people with genotype 1a of hep C and cirrhosis are advised to continue for 24 weeks. While highly effective at curing hep C, the therapy is not necessarily the best option for people on treatment for HIV, because only a few ARVs have proved to be safe to take with Viekira Pak. “While some may be able to have their ARV regimen changed to accommodate these restricted options,” says Daniel Fierer, MD, an infectious disease specialist at Mount Sinai in New York City, “the alternative HCV treatment, [Gilead Sciences’] Harvoni [ledipasvir/ sofosbuvir], has few drug interactions with ARVs, so it is difficult to justify making potentially risky changes in ARVs when a safe and effective alternative treatment for hepatitis C is available that does not require such a change.”
who had more than 500 CD4 cells upon entering the study and who began ARVs when their CD4s were still that high, those who started treatment after being infected for a year were 80 percent less likely to reach normal CD4 levels than those who went on ARVs during their first year of infection. Also, people who started ARVs within 12 months of contracting the virus had a 7.8 percent risk of developing AIDS, compared with 15.3 percent among those who started treatment after 12 months. The study’s lead author, Sunil K. Ahuja, MD, director of the Veterans Administration Center for Personalized Medicine in San Antonio, Texas, acknowledges that it is certainly worthy to weigh the potential cost of spending more of a lifetime on ARVs—since those drugs have toxicities—against the apparent benefits of earlier therapy. Nevertheless, he says, “If I had a choice, I would like to get my patients back to a state where I could say they are immunologically similar to HIV-uninfected people. Now, that may seem like an audacious goal, but that is the goal.”
Gum Disease Harms More Than Just the Mouth Byproducts from bacteria that flourish as a result of gum disease can wake up resting HIV-infected cells, causing potentially harmful viral replication in the mouth. Researchers studied five different metabolic short-chain fatty acids (SCFAs) that are byproducts of two kinds of oral bacteria: Porphyromonas gingivalis and Fusobacterium nucleatum. In a previous study, the researchers found that an SCFA called butyric acid kick-started a process that ultimately reactivated the virus associated with AIDS-defining cancer Kaposi’s sarcoma. In this study, the researchers broadened their study to include all SCFAs, looking at how they affected HIV replication in latently infected immune cells. The scientists discovered that a high level of butyric acid activates HIV replication in latently infected cells. Smaller levels of all five of the SCFAs, when put together, led to the same effect. “It is especially important for people with HIV to maintain good oral hygiene and treat gingivitis,” says study coauthor Jonathan Karn, PhD, a professor of molecular biology at Case Western Reserve University in Cleveland. “The reactivated virus is probably contained by the antiretroviral drugs, so there is unlikely to be an effect throughout the body. But virus is almost certainly getting activated in the mouth, and ideally that should be avoided.”
poz.com APRIL/MAY 2015 POZ 33
Read the real-life stories of people living with hepatitis C
Blogs LEARN MORE ABOUT HEPATITIS AT
hepmag.com
POZ SURVEY SAYS BY JENNIFER MORTON
Here’s To Your Health
Taking care of your overall health and well-being is just as important as taking your HIV meds. POZ recently asked about your health habits. Here are your responses.
17%
NOT VERY WELL
60%
23%
HOW IS YOUR OVERALL HEALTH?
MODERATELY WELL
VERY WELL
20% . . . . . . . . . EXCELLENT 54% . . . . . . . . . GOOD 23% . . . . . . . . . FAIR 3% . . . . . . . . . . NOT GOOD
HOW WELL DO YOU MANAGE STRESS?
60% of you generally get 7 to 8 hours of sleep each night.
6%
HOW IS YOUR MENTAL HEALTH?
19% . . . . . . . . . EXCELLENT 47% . . . . . . . . . GOOD 26% . . . . . . . . . FAIR 8% . . . . . . . . . . NOT GOOD
24%
NOT GOOD
46%
FAIR
GOOD
24%
14% of you are underweight.
EXCELLENT
HOW WOULD YOU DESCRIBE YOUR EATING HABITS?
HOW OFTEN DO YOU EXERCISE EACH WEEK FOR AT LEAST 20 MINUTES?
43% of you are average weight. 35% of you are slightly overweight. 8% of you are significantly overweight.
26%
LESS THAN ONCE PER WEEK
23%
1–2 TIMES PER WEEK
29%
3–4 TIMES PER WEEK
22%
5–7 TIMES PER WEEK
Source: January/February 2015 POZ poz.com APRIL/MAY 2015 POZ 39
MEMORY AND ACTIVISM IN THE ART OF ERIC RHEIN BY EMILY COLUCCI
REFLECTING FELLOW AIDS ACTIVIST DOUGLAS CRIMP’S CALL FOR “MOURNING
BILL WADMAN
and militancy,” New York–based artist Eric Rhein proves that art can act as both a memorial and a means of activism. Through his poetic and ethereal work, Rhein explores multiple facets of the ongoing HIV/AIDS crisis, from personal losses of friends and lovers to the wider decimation of New York’s art and LGBT communities to his own experiences as a long-term survivor. Rhein’s art not only confronts the traumatic history of the crisis, but also opens an essential dialogue about the current and future realities of HIV/AIDS. Visiting Rhein’s apartment in the East Village, where he has lived since his arrival in New York in 1980, I explore his artfilled space, including a 1981 photograph by Geoff Spear of trans artist Greer Lankton—her hair adorned with a wearable hair sculpture made by Rhein—and paintings by Luis Frangella. There, we discuss the progression of his artwork since his diagnosis, his seminal Leaves piece and the familial inspiration behind his artistic activism. As shown in his recent solo exhibition The Course of My Life at Johnson & Johnson Headquarters, which traced the trajectory of Rhein’s life and career since his diagnosis with HIV in 1987, Rhein’s artwork evolved after he learned of his status, mirroring the transition in his own life. His intricate sculptural chest Eric Rhein at work in his New York City studio
piece, “R.O.T.C.,” modeled after the dimensions of his own body, represents the intermediary link between Rhein’s artistic life before and after his diagnosis at 27 years old. “I actually think I had done this piece prior to testing positive. In a way, retrospectively, I had a sixth sense that a transformation was about to happen,” he reveals. While Rhein admits he was hesitant to disclose his positive status early after his diagnosis, he began to use his artwork as a public examination of illness, loss and his own ideas of spirituality, linked to his personal approach to healing. Employing materials as varied as wire, found books, jewelry, hardware and photography, Rhein’s multidisciplinary artwork investigates the HIV/AIDS crisis through the transcendental and metaphysical relation of the body to nature. Rhein’s art presents a stable of reoccurring imagery,
poz.com APRIL/MAY 2015 POZ 41
42 POZ APRIL/MAY 2015 poz.com
(BUTTERFLY GIRL) COURTESY OF ERIC RHEIN; (OTHERS) BILL WADMAN
specifically chosen for its rich metaphorical meanings. Even though, for him, many of these symbols come intuitively, he later considers their multiple connections to his experiences. Take Rhein’s hummingbirds: The Aztecs believed that hummingbirds were reincarnations of warriors; a hummingbird’s weight at 21 grams is equal to the weight the human body is believed to lose immediately after death; more simply, there’s a connection to his mother’s hummingbird feeder. His most frequently used symbol, though, must be the leaf, and Rhein’s most iconic and poignant artwork is perhaps his ongoing Leaves piece. It’s an overwhelming collection of portraits of friends, lovers and other important figures who passed away from AIDS complications—each portrait done as a wire outline of a unique leaf. Started in 1996, Leaves has grown to over 200 individual leaf portraits, with the most recent completed in 2014. Rhein conceived of Leaves while at the MacDowell Colony, a prominent art colony in New Hampshire. It was autumn, and Rhein himself was experiencing a near-miraculous transformation back to health thanks to protease inhibitors, which have since rendered his viral load undetectable. Reflecting on that time, Rhein says, “Before, I wouldn’t have been able to go [to MacDowell] because I was so ill and deteriorated. I had four T-cells, I was 127 pounds and I had candidiasis in my bone marrow. By the time I got there—because I was fortunate to get into the study for the protease inhibitors— I had a really rapid return. I had transformed. I was in this state of bliss and light.” W hile collecting fallen leaves at the art colony, Rhein felt the presence of his late From The Course of My Life, loved ones surrounding him. clockwise from top: “The Girl He began tracing each leaf in Down Old Vanleuvan Road wire as a way to construct a (Butterfly Girl),” 1992–1995, steel, brass & gold-filled wire, permanent personal memorifound objects, thread & glue; “R.O.T.C.,” 1987, wire, suede, al to those who died. He conleather, brocade fabric, found tinues the process to this day, objects; “Hummingbird #16– Flying West,” 2014, wire & paper titling each leaf with the person’s first name and “some poetic reference or attribute.” Leaves includes “Mysterious Robert,” for photographer Robert Mapplethorpe; “Fair Pam,” for a fellow support group member at Friends In Deed; and “Life Altering Spencer,” for activist Spencer Cox. Leaves ranges from world-famous names to lesser-known individuals who were influential in Rhein’s life. “In keeping with my desire to have the piece as an egalitarian presentation,” Rhein says, “I don’t single out noted people from people who were making differences in their lives in ways [that won’t be recorded] on a Wikipedia page.” Nonetheless, his wire portraits will no doubt gain more renown, as Leaves will be featured in the anticipated national exhibition Art AIDS America traveling later this
BILL WADMAN
year across the country (see page 48). Asked how he assigns the type of leaf to each subject, Rhein responds, “It’s intuitive. It’s not about the species except for some instances.” He gives as an example the portrait “Frank the Visionkeeper,” for the artist Frank Moore, a work Rhein describes as “a broad handsome oak leaf with some instances of decay.” Rhein remembers, “I first met Frank in 1994 and was taken to his loft to be part of the dialogue of how [arts and HIV/AIDS activism organization] Visual AIDS could evolve itself to giving hands-on support to artists. David Hirsch took me there that evening with a handful of artists, activists and arts administrators. Through that introduction to Frank and becoming more involved with helping the archive—seeing him through the years, he maintained his extreme generosity and support. There’s also an interconnectedness with our work. So that happens to correspond with him being an oak, a strong nurturing figure connected to nature.” Always understanding Leaves as an activist project, Rhein has exhibited it widely including at U.S. embassies in Cameroon, Malta and now Austria, opening a global dialogue about HIV/AIDS and LGBT issues. “Since I started it at MacDowell in 1996,” says Rhein, “I wanted for the piece to be able to go out into the world as an extension of myself and the people I was honoring. They would Started energetically connect with the world and in 1996, Leaves has also give aesthetic pleasure. When people over 200 leaf would know what they were about, it could portraits. be an activist piece.” While the vastness and visibility of Leaves occasionally threatens to overshadow the rest of Rhein’s insightful body of work, his compelling photographs also record his and his loved ones’ experiences with HIV/AIDS and sexuality, and his own identity as a long-term survivor. In his stunning photograph “Noon—June 5th, 1996,” Rhein documents an intimate, somber portrait of caretaking and illness, capturing his friend Ken in Rhein’s apartment. Rhein remembers, “It was the summer that the protease inhibitors were transforming me into health while his health was declining. He was eventually able to get into a study. At that moment in time, I was helping him keep going until we both got on better footing.” Fire Island—a gay vacation mecca a few hours outside New York City—has played an essential role as both a setting for Rhein’s photographs and a location of significance where he has come to terms with life as a long-term survivor. The island appears frequently in many of Rhein’s contemplative photographs such as “Visitation,” which depicts the monarch butterflies’ September migration. “For me, going to Fire Island was this interrelation of a lot of different elements,” Rhein recalls. “Being able to explore socializing with a group of men as a transformed physical person, I was being greeted very much on a physical level where I wouldn’t have been when I was sick. Also I knew that a lot of other men there had experienced the same thing, even though it wasn’t necessarily being talked about. I was alone in some way because people
weren’t really sharing it—only sporadically and individually. But I could also go out into nature.” Even though much of Rhein’s activist tendencies certainly originate from his own experiences with HIV/AIDS, Rhein also credits his uncle Elijah “Lige” Clarke for his conception of activism. Rhein honors the strength of this important figure through a delicate construction titled “Uncle Lige’s Sword.” A former Army private assigned to the Pentagon, Clarke was an early gay rights activist who, with his partner Jack Nichols, cofounded Washington, DC’s Mattachine Society and published the first national gay magazine, GAY. When Rhein was 11 or 12 years old, he discovered in his mother’s cedar chest a pair of books titled I Have More Fun With You Than Anybody and Roommates Can’t Always Be Lovers: An Intimate Guide to Male-Male Relationships, both written by his uncle and Nichols. Although Clarke was killed in Mexico shortly afterward, the books influenced his nephew’s view of activism. Rhein observes, “Reading them under my covers with a flashlight was my indoctrination into possibilities.” Opening an intergenerational dialogue about HIV/AIDS between long-term survivors and younger generations of activists, Rhein’s work raises the possibility of art as a living, evolving archive. It’s also an ongoing record of his life, or, as Rhein describes it: “Art is really the experience of life, and the artwork is an artifact from these experiences. I think of art as an indication of that experience, and I continue layering and creating, re-having a dialogue with it.” ■
poz.com APRIL/MAY 2015 POZ 43
Bowman uses poetry, advocacy and music to speak up about HIV.
BASED ON
Her True Story MUSIC AND ACTION IN THE POETRY OF MARY BOWMAN BY CASEY HALTER PHOTOGRAPHY BY JONATHAN TIMMES
I
T HAS BEEN FIVE YEARS SINCE MARY BOWMAN fi rst took the mic and disclosed her biggest secret to a live audience—she was born with HIV 26 years ago, in a Maryland suburb outside of Washington, DC, to a drug-addicted mother who died when Bowman was just 3 years old. “The sickness she denied lies in my blood with a lesser value,” is the big reveal in her poem “Dandelions,” the fi rst work she performed that declared her fears about dealing with her HIV status growing up. Since Bowman’s award-winning poetry collection, LOTUS, was published in 2011, the poet and songwriter has been at the forefront of a growing movement that uses storytelling and art to educate others about HIV/AIDS and to destroy the related stigma that can be as deadly as the virus itself. Between recording her fi rst R&B album, hosting monthly poetry open mics across the DC area and teaching her creative craft to local kids, Bowman has performed her poetry at HIV events and at colleges across the East Coast. In this edited POZ interview, the artist reflects on her accomplishments and shares her plans for the future.
What was the initial reaction to LOTUS? I did the book because at that time in my life I was dealing with depression, dealing with anxiety. I’d been in and out of the hospital for mental illness and I just wanted to have something that I could commit to and follow through with. To go through the whole process of writing the poetry, getting the pages together—it was an amazing accomplishment. I didn’t put the book out to receive accolades or book sales. There’s a company out of Philadelphia called 2 Pens & Lint; a friend of mine runs it, so I went through them to publish it. But when I fi nished it, it just became this big thing— people telling me all the time, “When I fell down, I read your book,” coming to me and saying, “I started crying when I read that poem.” That kind of response was really big. Bigger than I thought it would be, because I didn’t think it would be anything. That might have something to do with the fact that the book won the National Underground Spoken Word Award in 2011. And the fact that people started comparing you to Maya Angelou… When I won that award, I didn’t even know I could be nominated. That was one of the best moments of my career. That people even consider me in the same sentence as Maya Angelou—she’s one of my biggest inspirations, somebody that I read up on a lot. Big shoes to fill. I hope one day I’ll be able to live up to the standard that people hold me to. Love B.O.A.T.S., your new album available on iTunes and Amazon, is a lot different from LOTUS. Are you moving away from poetry? When I started performing, it was strictly poetry. But then someone found out that I could sing and was like, “Why don’t you write songs?” I wouldn’t say I’m moving from one thing to another—I think I’m just trying to fuse them together more. I recorded all the tracks with my producer Kwame, a.k.a. Oeaux, in his home studio, along with Jacob Avis. I met them through connections, through poetry, and we had this awesome, amazing chemistry working with each other. As for the album, there’s a little bit of soul in there, jazz, there’s a touch of classical, there’s a touch of R&B. Musically, I really don’t know which one to pick, especially because there’s spoken word on there as well. What is the album about? It’s a love story. I am kind of a hopeless romantic. I’m a softie. I love love. I had an awakening experience in a recent relationship I was in where the end was a little messy and really hurtful on both sides. I didn’t really have any other way to release that energy besides art and music. I decided to name the album Love B.O.A.T.S. for “Based on a True Story.” The name is also a play on a local drug here in DC with the name “Love Boat.” I’ve never tried this drug, but when I looked up the side effects, it’s like, you start seeing things, you hear things. It’s very cosmic, very euphoric, and you
46 POZ APRIL/MAY 2015 poz.com
think that things are going to be one way and then the come down of the drug is really harsh. The fall of that relationship was a lot like being on a Love Boat trip. Did your status factor into that relationship? No. I have been blessed to deal with women who really don’t care about other’s opinions. The people that they love are the people that they love, regardless of what people say or think. So, in that way, it was a regular relationship. We talked more about TV than about HIV. Are you continuing your HIV activism? Defi nitely. I usually have the most performances when there are AIDS awareness days. I recently performed at a fashion show at James Madison University, and I did a stigma conference at Howard University. I also do open mics in DC and just became a host at [poetry venue] Busboys and Poets in Virginia. I’m still working at the Women’s Collective. We take women in from the community who want to become advocates. We coordinate training sessions, group activities, take them out to [Ryan White Planning Council] meetings, just really get them used to being an advocate and what that means and how they can help their community in their own ways. I’m also still working on P.O.E.T., or Purpose Over Entertainment. I’m trying to turn it into something like an entertainment business where, if you need an [HIV-positive] advocate to come speak at your event, through poetry, singing, art or whatever, then we’ll have somebody who can do that. What are your plans as an HIV-positive artist? Over the next five years, I would like more professional gigs in other countries. I want to see myself having at least two more CDs and to fi nish my book I’m currently writing. I don’t want to say the title of my book, because I don’t want to do the whole “spoiler alert” thing, but it’s a book about the parts of me I don’t share on stage, about my HIV status. It’s going to be a mix of poetry, journal entries and short stories of actual things that have happened in my life. I am also working on another concept album that is going to be more HIV-focused. I hope to have the album out by December 1, so we can do a World AIDS Day premiere. I’m also going to be this year’s ambassador for the U.S. Department of Health Office of Women’s Health for their Women and Girls HIV/AIDS Awareness Day, mostly doing social media, tweeting out about the event. What drives you to continue with your performance career? I want to show people living with HIV that they don’t have to hide their status, even if they pursue their dreams. I want to de-stigmatize the entertainment world, to show little girls that grew up like me—who didn’t see anybody who had HIV doing what I wanted to do—that they can achieve whatever they want to do. ■
CREDIT
I Know What HIV Looks Like HIV looks like a child Birthed through a bloody disease ridden canal Into a world that would make dying seem worth your while It looks like a child Born with an enlarged spleen Packaged with the inability to do things Like join America’s great Army or be all that she could be Or simply live a life of normality Because the cool kids think HIV is ugly And she looks just like it Swollen lymph nodes and all All because her mother made one false move One high that came down too soon Her mother was doomed to a life full of death And so was she It was predicted that she would breathe her last breath before 5 But now Here she stands 5 foot 9 15 years after her expected demise Flashing a smile that blinds eyes trying to see her pain Her breath carries hints of disdain But she mustn’t remain silent No matter how bad it stinks She can’t allow people to go on and think That HIV only looks like Skinny bodies, pale skin, open sores, and baby thin hair She can’t help but start a movement that does more than just wear red t-shirts on December 1st No matter how much it hurts She was cursed with this enigma so she sets out to slay this fire breathing stigma of HIV And pray that the world will no longer be bullies But become fully aware that they are just jealous of the Magic in Irving’s HIV money And his HIV AMC’s And his HIV Grande’ latte’s And what ever other HIV things he has You see HIV looks like a healthy man with sick paper Who didn’t ask for the haters
Looks like little girls in South Africa that didn’t ask for the rapers HIV looks like Niggas With Attitude watching Eazy leave 10 days after going to the doctor for what he believed to be asthma HIV looks like a boy receiving the wrong blood transfusion at 13 one who would one day bring awareness to this thing once called the gay man’s disease and lose his life at 18 Ryan White lived 5 years longer then expected Because God wanted to show the world what HIV looks like And it damn sure don’t look like BET’s lame excuse for promoting awareness through 30 second commercials in interlude to videos of men telling our young women to have a baby by them after they’ve blamed it on the alcohol wasted These young women become consumed in their mother’s basement Trapped between walls of ignorance laying in their innocence bare naked As HIV stares them in the eyes they don’t know that they too will soon know that HIV looks like And it looks like cocktails that don’t get served during happy hour But get served in the form of a capsule or pill to kill this disease that seeks to devour our young And leave them orphanized in the concrete jungles of Washington DC And add insult to injury by telling them that dandelions don’t belong in the midst of roses Takes peace and teases them by holding it underneath of their noses But what HIV doesn’t know is I’ve known what it looks like for years I have cried its abandoned tears and I’ve lived with the fear of dying Been caught flying without wings and I’ve been found lying in cold prayers On floor 3 of children’s national medical center Realizing that I don’t own the luxury of only having colds in the winter But opportunistic diseases left me
asking Jesus when summer was really going to begin When was I going to be able to ride my bike arms stretch wide caressing the wind with the same hands used by God to compose symphonies in the key of brokenness I know what HIV looks like Every morning I stare it in the eyes realizing that even though my biological mother’s memory can’t not be found in my mind I am the only one of my siblings that carries her blood line I am the only one of my siblings blessed with a life full of positivity I know what HIV looks like And I will continue to live my life exposing the ever changing face of HIV So that the world will no longer be bullies But become fully aware that if it only takes 32 people to die for a nation to become Hokies Then surely the death of over 25 million people should bring the world to become a sea of red ribbons So HIV will no longer look like anything but extinct Please don’t misunderstand me Knowing what HIV looks like Comes with the price of my life nailed to a ruthless disease But I’d rather die telling people what HIV looks like then to live with knowing I haven’t said a word. —Mary Bowman From LOTUS Published by 2 Pens & Lint, 2010
poz.com APRIL/MAY 2015 POZ 47
Carrie Yamaoka, “Steal This Book #2,” 1991, unique chemically altered gelatin silver print, 20 x 24 inches
HMMM FACTOR Many artists address AIDS on an indirect, oblique level. Here, activist/ artist Yamaoka takes pages from Abbie Hoffman’s 1971 book, Steal This Book—about challenging the powers that be—and whites out almost all the words.
AN EXCLUSIVE LOOK AT THE UPCOMING ART AIDS AMERICA TRAVELING EXHIBITION BY TRENTON STRAUBE
F YOU VISIT THE ART AIDS AMERICA EXHIBITION expecting to see activist slogans and memorial pieces along with some art-world superstars, you won’t be disappointed—Keith Haring, Robert Mapplethorpe and the “Silence = Death” slogan are present and accounted for—but you might also walk through the show scratching your head in confusion. That’s because the exhibit highlights a less-obvious style of art, one that may cause you to wonder, “Huh? How is this about AIDS?” Nonetheless, as co-curators Jonathan David Katz and Rock Hushka set out to prove, the 100-plus pieces in the exhibit do more than capture the breadth of the U.S. epidemic and inspire discussion about the disease; they also illustrate, in Hushka’s words, “how the artists’ response to the epidemic utterly changed artistic practice in the United States.”
48 POZ APRIL/MAY 2015 poz.com
But first, an overview: A decade in the making, the exhibition kicks off with a preview in June at the ONE Archives Gallery & Museum in West Hollywood before opening October 3 at the Tacoma Art Museum in Washington, where Hushka is the chief curator (Katz is a professor with the University at Buffalo, SUNY). The show then moves in early 2016 to the Zuckerman Museum of Art in Kennesaw, Georgia, before closing at the Bronx Museum of the Arts in New York. At this point, dates are tentative, so double-check with each institution. The exhibit is divided into pre- and post-cocktail eras— when combination therapy transformed HIV from a death sentence to a “manageable” chronic illness—and it spans more than three decades. Katz says the show’s oldest piece, Izhar Patkin’s “Unveiling of Modern Chastity,” from 1981, “is, as far as I know, the first work of art about AIDS.” Made of
Derek Jackson, “Perfect Kiss,” 2007, slide show with found music and original still imagery, 7 minutes
HMMM FACTOR To the sound of New Order’s “Perfect Kiss,” images depict Jackson cruising online, hooking up and dancing. They seem to ask: As you navigate sexual intimacy, do you put yourself at risk?
Eric Avery, “HIV Condom Filled Piñata,” 1993, molded paper woodcut, each is 8.5 inches in diameter
ALL IMAGES: COURTESY OF TACOMA ART MUSEUM
HMMM FACTOR This is a photo of Avery’s educational installation that includes piñatas shaped like HIV and filled with condoms. Avery, who is also a physician, let people break them open. Alas, that won’t happen to the piñatas in Art AIDS America.
rubber paste, latex theatrical wounds and printing ink on stretched canvas, it’s a putrid green surface pitted with lesions, an obvious reference to Kaposi’s sarcoma. Katz and Hushka scoured the country for works of both artistic quality and historic or cultural importance, most notably pieces by regional and community artists as well as art featuring minority populations. An example is photographer Ann P. Meredith’s 1987 “Anonymous Woman With AIDS” from her portraits of women of color living with the virus. “Remarkably,” Katz explains, “each of those women insisted on having her face removed, given the context of the time, so Meredith scratched it out.” The show includes a variety of styles and mediums, including the use of language and words, like in Jenny Holzer’s 1988– 1989 work “Laments (The New Disease Came…)” comprising
verse on drafting paper resting atop coffin-like black forms. It begins: The new disease came. / I learn that time / does not heal. / Everything gets / worse with days. / I have spots / like a dog. Fastforward to 2013 and you have fierce pussy’s “For the Record,” a collection of posters, stickers, postcards and downloadable files created for Visual AIDS. A dense block of text, it reads: if he were alive today he would be at this opening if she were alive today you’d be texting her right now if he were alive today he would be going gray if they were alive today … and on and on and on. But others require you, the viewer, to think things through, or at the very least to read the accompanying wall labels. It helps, too, if you know a bit of cultural context and art history. As Katz points out, when AIDS first struck, the prevailing
poz.com APRIL/MAY 2015 POZ 49
Tino Rodriguez, “Eternal Lovers,” 2010, oil on wood, 18 x 24 inches
HMMM FACTOR Evoking Mexico’s
Day of the Dead celebrations, Rodriguez illustrates his personal philosophy: We need not fear the afterlife, he says, because eternal love overcomes death.
Robert Sherer, “Sweet Williams,” 2013, HIV- and HIV+ blood on paper, 24 x 18 inches
HMMM FACTOR As a child, Sherer would help his grandmother by collecting flowers from a garden. “Take all the pretty ones first,” she’d instruct. Years later, he recalled those words as he witnessed young, handsome men dying of AIDS complications. What’s more, he created this piece using blood.
frame of reference in the art world was postmodernism, which claims that art is not the product of the maker but of the viewer. In other words, the artist is “dead” and the audience interprets, or creates, the true meaning of the work. As such, postmodern artists never include biographical elements or offer information that might influence the viewer’s experience (that’s why many pieces are labeled “Untitled”). The early ’80s also witnessed the birth of the culture wars and intense censorship, when statements about sexuality and AIDS were verboten in mainstream museums. How to get around this? One popular reaction has been to create works that reference well-known pieces while giving them a twist. For example, Pop artist Tom Wesselmann was famous in the ’60s for his bright breakfast collages. Along comes AIDS activist Joey Terrill, who created a similar piece in 2000, “Still-life with Zerit,” subtly adding a bottle of the HIV med to the product placements in the kitchen landscape.
50 POZ APRIL/MAY 2015 poz.com
Other AIDS artists developed a new strategy. They “took a cue from the very infection that was killing them,” Katz says. “They decided to attack—undercover and camouflaged—and to essentially enter the museum virally. Félix González-Torres says this flat-out: ‘I have become a virus.’ “The remarkable thing,” Katz continues, “is that it succeeded. The work was circulated in the museum system, unmolested by the Neanderthals in Congress like Jesse Helms who were aggressively policing the representation of AIDS.” The price of this successful strategy, though, is that the resulting pieces risk being too academic and removed for the general viewer. Works created in this style—or “strain” of art, as Katz calls it—reference HIV in the most indirect, oblique manner. Imagine, for example, that you visit a gallery and notice strings of red beads hanging from a rod placed over the doorway; after you walk through the beaded curtain, you realize it’s an artwork: González-Torres’s “Untitled (Blood)” from 1992.
Thomas Haukaas, “More Time Expected,” 2002, handmade ink and pencil on antique ledger paper, 16.5 x 27.5 inches
HMMM FACTOR Look closely and you’ll notice that some horses are missing riders. That’s in honor of Native Americans lost to the epidemic. Haukaas is a member of the Rosebud Lakota Sioux.
Deborah Kass, “Still Here,” 2007, oil and acrylic on canvas, 45 x 63 inches
HMMM FACTOR From her body of work Feel Good Paintings for Feel Bad Times, this painting references Stephen Sondheim’s “I’m Still Here,” a song that champions survival and resilience.
Jenny Holzer, “Untitled (In a Dream You Saw a Way To Survive and You Were Full of Joy),” 1983–85, packaged latex condoms with printed text, each is 2 x 2 inches
ALL IMAGES: COURTESY OF TACOMA ART MUSEUM
HMMM FACTOR In her Survival Series of artwork, Holzer printed various truisms on condoms. What does it all mean? Like many artists, Holzer refuses to answer, leaving all interpretation up to you, the viewer.
Given the year, you’d likely viscerally understand the subtext—You touched blood, you could be infected—but what would you make of his 1993 piece “Untitled (North),” comprising nothing more than strings of light bulbs hanging in the center of a bare room? Katz and Hushka make the case that these are important works that went on to influence the next generation of artists. “They brought back the voice of the artist,” Hushka explains. “Contemporary artists working in an autobiographical frame have realized the dream of the AIDS activists. In this radical way of thinking of art, they’ve incorporated their own meaning back into the work.” The artist is no longer “dead.” But hold on. The battle hasn’t been won. Both co-curators stress that HIV remains with us, as do the culture wars and censorship. Just five years ago, the Smithsonian censored a
show Katz curated called Hide/Seek, about sexual identity in portraits; after complaints, it pulled a controversial David Wojnarowicz video that portrayed ants on a crucifix. Both Katz and Hushka expect controversy this time around too, though neither can predict its precise focus. Likely contenders include Barbara Kruger’s 1991 “Untitled (It’s our pleasure to disgust you)” involving a gas mask and crucifix, and the 1989 Mark Chester piece titled “Robert Chesley – ks portraits with harddick and superman spandex.” Katz explains its relevance: “I can’t tell you how important this work was for a generation, in 1989, that had come to associate their own ejaculate with death. This work takes an obvious AIDS body and resexualizes it. It’s a remarkable work, and Robert Chesley is an important San Francisco playwright.” Does that make you go hmmm? Regardless of your personal interpretations, the Art AIDS America exhibit is not to be missed. In fact, it’s one for the history books. ■
poz.com APRIL/MAY 2015 POZ 51
HEROES
BY TRENTON STRAUBE
As director of operations at the World AIDS Museum and Educational Center in Wilton Manors, Florida, Ed Sparan gives one-hour docent tours of the facilities. He guides visitors through the main exhibit, which is a timeline of the virus—“People are surprised a panel goes back to 1908,” he notes—but the pièce de résistance is a sculpture titled “10 Year Ribbon,” in which an artist saved his Epzicom and Viramune bottles for a decade and transformed them into a red ribbon representing about $333,000 in HIV meds. “People are in awe when I tell them that,” Sparan says. “They realize having HIV is not as simple as taking a single pill.” The sculpture spurs lots of questions, and Sparan can nimbly answer most of them. Which is no surprise—after all, he created the piece. Art is a “great tool” for teaching about the epidemic, he says. In fact, the museum is hosting an AIDS awareness art project with 40 high schools across Broward County, which is home to both Fort Lauderdale and the museum. Winners from each school will be displayed in a gallery at the museum. HIV education is needed in Florida. The state ranks second in the nation (behind California) for the highest number of new HIV cases, with Broward and Miami-Dade counties being the hardest hit. The idea for the World AIDS Museum, which opened last year, originated in a local support group called POZitive Attitudes, facilitated by Steve Stagon. Already, the museum includes a media center, a video archive of personal HIV stories, plus displays about stigma and AIDS in the media—“The first issue of POZ is beautifully framed,” notes Sparan, formerly an actor in New York City. Visitors can also peruse a digital archive of the AIDS Memorial Quilt. “People tell me, ‘I made a quilt for so-and-so,’ then I type in the name and it comes up. They haven’t seen it in 20 years, and suddenly they’re crying in my arms,” Sparan says, then jokingly adds: “We need grant money for Kleenex!” The museum’s varied collection is already growing fast. As Sparan explains, “A lady sent me an email saying, ‘Mike passed away in 1985. Mom took care of Mike. Can we send you mom’s diary of taking care of Mike?’ So we’ll have this kind of artifact too.” Sparan and the museum team are already brainstorming future exhibits, movie nights, guest speakers and special events tailored to various populations—Latinos, African Americans, straight people, the transgender community. “The subject of AIDS is so complicated, and there are so many sides to it,” he acknowledges. “But we want everyone to come here and explore.”
56 POZ APRIL/MAY 2015 poz.com
SONYA REVELL
Making History
SURVEY
4
How much do side effects affect your day-to-day life?
❑ A lot ❑ Somewhat ❑ Not at all 5
Have you ever switched or stopped your regimen because of side effects?
❑ Yes ❑ No 6
Have your side effects ever prevented you from working for any length of time?
❑ Yes ❑ No
SIDE EFFECTS
7
❑ I took nonprescription drugs ❑ I took prescription drugs ❑ I used herbal remedies or other alternative remedies ❑ I used marijuana (medical or otherwise) ❑ I changed my lifestyle to accommodate the side effects ❑ Other (please specify):___________________
The HIV meds that can keep you healthy can sometimes also make you feel worse. Side effects can make it difficult to adhere to your meds—not to mention the fact they can get in the way of your life. POZ wants to know what types of side effects you have and what you do to manage them. 8 1
How long have you been living with HIV?
❑ Less than one year ❑ 1–5 years ❑ 5–10 years ❑ 10–15 years ❑ 15–20 years ❑ 20 year s or more How long have you been taking HIV medication?
❑ Less than one year ❑ 1–5 years ❑ 5–10 years ❑ 10–15 years ❑ 15–20 years ❑ 20 year s or more ❑ I have never taken HIV meds (skip to question 9)
THINKSTOCK
3
Do you suffer from any of these side effects on your current HIV regimen? (Check all that apply.)
❑ Anemia ❑ Bone loss (osteoporosis or osteopenia) ❑ Depression ❑ Diarrhea ❑ Difficulty sleeping ❑ Erectile dysfunction ❑ Fatigue or loss of energy ❑ Increased cholesterol ❑ Increased triglycerides ❑ Kidney damage ❑ Lipodystrophy (body fat changes) ❑ Liver damage ❑ Memory loss ❑ Nausea or vomiting ❑ Pain, numbness or tingling in the hands or feet ❑ Skin problems, such as rash, dryness or itchiness ❑ Trouble concentrating
Were you worried about potential side effects before you started HIV treatment?
❑ Yes ❑ No 9
2
Which of the following have you done to alleviate your side effects? (Check all that apply.)
Do you worry about the potential long-term side effects of HIV medication?
❑ Yes ❑ No 10
What year were you born?__ __ __ __
11
What is your gender?
❑ Male ❑ Female ❑ Transgender ❑ Other 12
What is your sexual orientation?
❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other 13
What is your ethnicity? (Check all that apply.)
❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify):___________________ 14
What is your ZIP code? __ __ __ __ __
Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #203, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424