NOVEMBER 2017 • ISSUE 277 • AMERICA’S AIDS MAGAZINE
MULTIPLY YOUR KINDNESS A&U’s Gift Guide Gives You a Chance to Raise Spirits & Raise Funds
ALL KINDS OF SURVIVORS Novelist Julia Glass Explores Loss & HIV
• Jai Rodriguez • Eric Tenorio • Damon Jacobs • HEROES LA • Davey Wavey
A Refugee from Ivory Coast, the LGBTQ & AIDS Activist Fights for Global Access to Treatment and Seeks to Create a Nonprofit Dedicated to Human Rights & Diversity
YOU MATTER AND SO DOES YOUR HEALTH
That’s why starting and staying on HIV-1 treatment is so important.
WHAT IS DESCOVY®?
DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people 12 years and older. DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. DESCOVY combines 2 medicines into 1 pill taken once a day. Because DESCOVY by itself is not a complete treatment for HIV-1, it must be used together with other HIV-1 medicines.
DESCOVY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking DESCOVY. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body ﬂuids. Never reuse or share needles or other items that have body ﬂuids on them.
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about DESCOVY? DESCOVY may cause serious side effects: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking DESCOVY, your HBV may suddenly get worse. Do not stop taking DESCOVY without ﬁrst talking to your healthcare provider, as they will need to monitor your health. What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: • Changes in your immune system. Your immune system may get stronger and begin to ﬁght infections. Tell your healthcare provider if you have any new symptoms after you start taking DESCOVY. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you to stop taking DESCOVY if you develop new or worse kidney problems. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being
more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. • Bone problems, such as bone pain, softening, or thinning, which may lead to fractures. Your healthcare provider may do tests to check your bones. The most common side effect of DESCOVY is nausea. Tell your healthcare provider if you have any side effects that bother you or don’t go away. What should I tell my healthcare provider before taking DESCOVY? • All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how DESCOVY works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Ask your healthcare provider if it is safe to take DESCOVY with all of your other medicines. • If you are pregnant or plan to become pregnant. It is not known if DESCOVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking DESCOVY. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Important Facts about DESCOVY, including important warnings, on the following page.
Ask your healthcare provider if an HIV-1 treatment that contains DESCOVY® is right for you.
This is only a brief summary of important information about DESCOVY and does not replace talking to your healthcare provider about your condition and your treatment. ®
(des-KOH-vee) MOST IMPORTANT INFORMATION ABOUT DESCOVY
POSSIBLE SIDE EFFECTS OF DESCOVY
DESCOVY may cause serious side effects, including: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking DESCOVY. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to check your health regularly for several months.
DESCOVY can cause serious side effects, including: • Those in the “Most Important Information About DESCOVY” section. • Changes in your immune system. • New or worse kidney problems, including kidney failure. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. • Bone problems. The most common side effect of DESCOVY is nausea. These are not all the possible side effects of DESCOVY. Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with DESCOVY.
ABOUT DESCOVY • DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people 12 years of age and older. DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. • DESCOVY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.
BEFORE TAKING DESCOVY Tell your healthcare provider if you: • Have or had any kidney, bone, or liver problems, including hepatitis infection. • Have any other medical condition. • Are pregnant or plan to become pregnant. • Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-the-counter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.
GET MORE INFORMATION • This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more. • Go to DESCOVY.com or call 1-800-GILEAD-5 • If you need help paying for your medicine, visit DESCOVY.com for program information.
HOW TO TAKE DESCOVY • DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines. • Take DESCOVY with or without food.
DESCOVY, the DESCOVY Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: April 2017 © 2017 Gilead Sciences, Inc. All rights reserved. DVYC0057 05/17
We need to throw away the stigma and fear about HIV testing. It’s time we make HIV testing a part of our health routine. — Jay Ellis, Actor
DOING IT Testing for HIV
#DoingIt Testing is Fast, Free, and Confidential cdc.gov/DoingIt
c o n t e n t s November 2017
44 Cover LGBTQ & AIDS Activist Carlos Idibouo Talks to A&U’s Alina Oswald About How Immigrants Navigate Risk, the Goal of Global Healthcare Access & Advocacy in the New Era of Undetectable
Features 32 Gallery Photographer Eric Tenorio Explores the Bonds of Queer Men in Stunning Color 10 The Writer as Witness Award-Winning Novelist Julia Glass Revisits the Representation of Positive Characters 36 Mi Familia With Positively Fearless, Actor Jai Rodriguez Promotes Sexual Health Among Latinx Gay & Bi Men 38 Making Spirits Bright A&U’s 16th Annual Gift Guide Offers Chances to Strengthen ASOs This Holiday Season 50 Uncensored Social Media Vlogger Davey Wavey Helps Viewers Tune In to HIV Prevention cover photo by Alina Oswald
For the Long Run
Brave New World
Our Story, Our Time
Bright Lights, Small City
The Culture of AIDS
Everything to Declare
ever one to jump to conclusions, but I might as well start a new bad habit, what with the way the news flow has been of late. Witness the recent conflagration of news and fake news; every day is another healthcare scare for all of us living with HIV. Not because we can’t manage the virus inside our bodies. We have antiretroviral drugs for that. But the Twitter Estate (forget calling it the Fifth Estate) is taking up too much of my time when all I really want is real healthcare news. Facts, not spin. It is a truly surreal place, the White House Press Office; its reliance on revisionism and mendacity has created a dangerous situation for those of us who are trying to believe in our institutions; it is why when on a recent trip to London I was innocently asked by the taxi driver if I was having a good time away from the greatest country on the planet. That’s right, even with a nation getting nothing done, we are still respected, no, loved by our closest ally on the other side of the pond. We are, after all, the heroes of the twentieth century: having defeated the Nazis, communists, and ISIS, America is more than ever the shining city on the hill. Our country is the arbiter of democracy, fairness, and inclusiveness with a statue welcoming the oppressed and downtrodden in New York City’s harbor. And with the United Nations not too far away, and housed in a building built on U.S. soil, America does represent—to millions around the world—a beacon. That is why it is ironic that this month we are featuring one of the recent additions to Canada. In these increasingly xenophobic times, the international LGBTQ and HIV/AIDS activist Carlos Idibouo, has arrived! In an exclusive interview with A&U’s Alina Oswald, Mr. Idibouo is a shining example of why Canada is also, like the United States, a nation of immigrants who are bringing their talents and their dreams to these shores. His international brand of AIDS activism is most welcome in North America! But Idibouo is not one to paint too rosy a picture; Idibouo sums up his counting his lucky stars this way: “You see, [for immigrants] coming to North America, to
AMERICA’S AIDS MAGAZINE issue 277 vol. 26 no. 11 November 2017 editorial offices: (518) 426-9010 fax: (518) 436-5354
the rich people country, is part of a dream process.” As a former citizen of the impoverished Ivory Coast, Idibouo is well aware how fortunate he really is. But he is also cognizant of how refugees to both the United Sates and Canada often put themselves at risk for HIV infection: “You can’t say no because you have just met someone who would be able to save your life and you’re afraid that you’re going to lose that person. And so, you’re trapped. It’s only later on, when you get your legal status, that you realize that you could have avoided [risking exposing yourself to HIV.] But by then it’s often too late.” And so Mr. Idibouo’s journey to North America is more complicated than one might assume. But it is not without hope. Idibouo has recently founded a nonprofit organization geared to helping MSMs with the coming out process, including focusing on HIV awareness and the availability of PrEP to reduce the incidence of new infections. He’s an active campaigner for the U=U campaign, because according to this honest and forthright AIDS educator, “science is able to prove [that undetectable really means untransmittable.]” Washington could learn a thing or two from AIDS activists like Idibouo and others featured in our issue, activists who believe that honesty is the best policy when it comes to destigmatizing the virus. Damon Jacobs, featured in Ruby’s Rap, has been an outspoken and steadfast advocate for PrEP. As a spokesperson for the Positively Fearless campaign, Jai Rodriguez bares his soul about navigating identity and sexuality in a family beholden to Latinx mores. And Davey Wavey, the YouTube phenom who always speaks his mind, aims to promote sex-positivity as a way to stay on top of one’s sexual health. As the White House spins out of control, we need to anchor ourselves in voices of these kinds of advocates, who know what is fake and what is at stake—our health, liberty, and the pursuit of happiness.
Editor in Chief & Publisher David Waggoner Managing Editor: Chael Needle Senior Editors: Dann Dulin, Sean Black Editors at Large: Chip Alfred, Hank Trout Special Projects Editor: Lester Strong Arts Editor: Alina Oswald Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, T.J. Banks, Larry Buhl, Ruby Comer, Diane Goettel, George M. Johnson, John Francis Leonard, Angela Leroux-Lindsey, Dale Reynolds, Connie Rose, David Rosenberg, Corey Saucier, Stevie St. John, Justin B. Terry-Smith, Patricia Nell Warren, Jeannie Wraight, Rob Zukowski Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Tim Courtney, Duane Cramer, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Michael Kerner, Tara Lessard, Tom McGovern, Nancy Perry, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 • Chris Companik, 1957–2012 Nancy Ellegate, 1959–2015 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 122102743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: firstname.lastname@example.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2017 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/ international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 122102743, USA
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Marsh photo by Mike Olliver; Grande photo by Sean Black; Gore photo by Holly Clark
topcomment In response to T.J. Banks’ September 2017 profile of Miriam’s House founder Carol Marsh, Bill S. wrote: “Wonderful article. And I encourage everyone to read her book. It is an incredibly honest story of the challenges she faced and how she grew through her interactions with patients and staff. Very powerfully written.”
@au_americas_aids_magazine A&U • NOVEMBER 2017
AN EVENING OF SHOPPING & COCKTAILS TO SUPPORT HOUSING WORKSâ€™ MISSION TO END
AIDS & HOMELESSNESS. FASHION FOR
CHELSEA SHOP 143 W. 17TH ST NEW YORK, NY
WRITER as WITNESS Novelist Julia Glass Talks to Mark Olmsted About AIDS, Loss & the Consolation of Words
Mark Olmsted: Shall we start by reassuring everyone that—despite the intro—reading a Julia Glass novel is anything but a downer? There’s actually a lot of humor in your books, which are full of witty characters. Are you considered “the funny one” among your family and friends? Julia Glass: At home, when I was young, my father was the funny one. He had a wry, sophisticated wit—and a love of verbal gymnastics. He would instruct me and my sister on widening our vocabulary in amusing ways: say, by deploying more creative insults. (My favorite was “geophagic troglodyte”— dirt-eating cave dweller—which worked well for me decades later in thwarting the anonymous fiend who stole my Sunday paper several weeks running.) So when I grew into my own funnyness, it surprised me—and it surprises others. I’m used to hearing new
photo © Dennis Cowley
ulia Glass rose to literary prominence in 2002, when she received the National Book Award for her debut novel, Three Junes. Those lucky enough to have read it will never forget the indelible Fenno McLeod, the Scottish bookstore owner in New York’s West Village, and the deep friendship he forges with the dashing and dramatic music critic Malachy Burns, who gradually succumbs to AIDS. (The book takes place as the eighties turn to the nineties). Ms. Glass revisited the characters in 2014 in And the Dark Sacred Night, paying particular attention to the emotional trajectory of Malachy’s mother, Lucinda Burns, after the death of her son. Several of her books—I See You Everywhere, The Widower’s Tale, and her most recent, A House Among the Trees—similarly explore themes of grief and survivorship.
A&U • NOVEMBER 2017
friends remark, “You know what? You are really funny.” I must seem very grave on first acquaintance! And maybe that describes my novels. I write about weighty stuff: heartbreak, mortality, betrayal. Yet I aim to tell stories that will make readers laugh as often as they cry. As often as I inflict loss and sorrow on my characters, I bestow consolations. And I always end on a hopeful note. I also know, too well, the importance of being able to laugh in the face of death. I’ve lost young friends not just to AIDS but to other rogue diseases and to drugs; I’ve been treated for breast cancer twice; and my brilliant, beloved sister killed herself at the threshold of a promising career. You manage to get into the skin of your gay characters as well as any writer I know. Can you speak a bit about the role gay men have played in your life? Was there a particular friend on whom you modeled either Fenno or Malachy—or any of your other gay characters? In hindsight, a lot of my friends since childhood have been, or became, gay men. Starting in grade school, I hung around with “creative” classmates, and a number of the boys I considered confidants would come out many years later. (Fifteen years ago, I reconnected with my first true best friend, a boy I lost touch with at age nine, when my family moved. I learned he had come out after college. In our sixties now, we’re close again, and we crack up at memories of listening to Broadway musicals on his parents’ record player in 1963. Yes, Barbra Streisand in Funny Girl!) In my twenties, I had romantic relationships with three men who had yet to come out. Though I’m straight as can be—hey, I love men too!—there is some deep, lifelong affinity I can’t explain. Perhaps it has something to do with being shaped by a particular kind of vulnerability? Recently, on a questionnaire, I was asked to choose my gender from a dozen options. I saw one I’d never seen before: “two spirit.” I found out that it’s a term unique to Native Americans, but you know what? That’s just how I feel: of two spirits, straight woman/gay man. I’m grateful that my very hetero husband isn’t threatened. He’s a fan of the Alien movies, and we’ve joked that perhaps one day a fully formed gay guy—picture Rupert Everett— will pop out of my chest. As for my characters, I regard most of them as fully invented—though I borrow habits, tastes, tics, and family lore from people I know. And there’s always one who’s a skewed version of me. Fenno began as a reflection of tendencies I’ve had toward reticence and fear, toward “standing back.” I suspect that, unconsciously, I started NOVEMBER 2017 • A&U
writing Three Junes as a cautionary tale for myself at a time of crisis and uncertainty. I was living in the West Village in the early nineties then. Both my first cancer diagnosis and my sister’s death occurred in December 1992. Since the late eighties, I had been doing volunteer work helping people who were weakened by HIV to care for their pets. So many of those people died within months of my meeting them. Malachy’s entrance—involving the necessary surrender of his parrot—was inspired by that work. In my new novel, Mort Lear contains flashes of my father, who died while I was in the middle of writing that book. Mort’s younger lover, Soren, is more of a “type”—the vain but charming artist whose good looks are a curse as much as a blessing. We get to know Lucinda Burns first as a mother caring for her dying son, and then, decades later, as a mother who has learned to live with a kind of grief that never really lifts. I wonder if you might elaborate on how you inhabited her so skillfully? Was it emotionally difficult to write her given your own vantage point as a mother? How we endure, even lead full lives, after suffering inconsolable loss is a recurring subject in my novels—which also tend to be populated with a wide variety of mothers. I think that would be so even if I weren’t a mother. Mothers are one thing that all human beings have in common— and whether we know them for a day or decades, they play a big role in who we become. Keep company with one of my characters and you’ll wade into his gene pool. In Three Junes, Lucinda, Mal’s all-important mother, was the character I had the hardest time creating: a devout Catholic and deeply loving mother agonized by her son’s refusal to embrace that faith as he’s dying of AIDS. Yet once I “had” her, I fell in love, and she haunted me through the writing of three other novels. Finally, I let her back in. Here she was, years later, caring for her husband after a stroke. That experience takes her back to caring for her dying son. I could now imagine the trajectory of Lucinda’s life back to her wartime childhood. Other losses she’s suffered emerge. But her worst loss was of Mal, secretly her favorite child, and she struggles with how her heartbreak and her guilt sabotage her love for her surviving children: a son (also gay) who’s found a life partner, a daughter with a rich if more conventional life. An unexpected family connection reunites Lucinda with Fenno McLeod, who has also found a partner (the colorful Walter Kinderman, possibly my own favorite “child”—but don’t tell the others). continued on page 62
NNewsBreak EWSBREAK Alternate Endings, Radical Beginnings For its twenty-eighth annual Day With(out) Art project, Visual AIDS presents Alternate Endings, Radical Beginnings featuring newly commissioned videos by Mykki Blanco, Cheryl Dunye & Ellen Spiro, Reina Gossett, Thomas Allen Harris, Kia Labeija [A&U, May 2015], Tiona McClodden and Brontez Purnell. Premiering on World AIDS Day 2017 at the Whitney Museum of American Art, and curated by Erin Christovale and Vivian Crockett, the video program prioritizes Black narratives within the ongoing AIDS epidemic. Despite the disproportionate impact of HIV/AIDS within Black communities—in 2016 African Americans represented forty-four percent of all new HIV diagnoses in the United States—the stories and experiences of African Americans are routinely excluded from larger artistic and historical narratives, increasing the urgency of telling those stories. Alternate Endings, Radical Beginnings—which includes intimate meditations of young HIV-positive protagonists; a consideration of community-based HIV/AIDS activism in the South; explorations of the legacies and contemporary resonances within AIDS archives; a poetic journey through New York exploring historical traces of queer and trans life; and more—seeks to highlight the voices of those who are marginalized within broader Black communities nationwide, including queer and trans folks. Visual AIDS organized the first Day Without Art to coincide with the World Health Organization’s second annual World AIDS Day on December 1, 1989. A call went out for “mourning and action in response to the AIDS crisis” that would celebrate the lives and achievements of lost colleagues and friends. More than 800 arts organizations, museums and galleries throughout the U.S. participated by, for instance, shrouding artworks and replacing them with information about HIV and safer sex. In 1998, for its tenth anniversary, Day Without Art became Day With(out) Art, parentheses added to highlight the inclusion of art projects focused on the ongoing AIDS pandemic and to encourage the programming of artists currently living with HIV. You can catch the New York City premiere of Alternate Endings, Radical Beginnings at the Whitney Museum of American Art on World AIDS Day, December 1, 2017 from 6:30 to 9:00 p.m. Currently, Visual AIDS is seeking partnering institutions to screen the hour-long video program on or around World AIDS Day. The program will be provided free of charge, with technical and presentation logistics coordinated by Visual AIDS. If you’re interested in screening Alternate Endings, Radical Beginnings through your organization, or highlighting the project through your social media platforms, please contact Visual AIDS Programs Director, Alex Fialho by e-mail at email@example.com or by phone at (212) 627-9855. For more information about Visual AIDS and A Day With(out) Art, log on to: www.visualaids.org. Visit Whitney Museum of American Art online at: www.whitney.org.
Biomedical HIV Prevention Summit NMAC’s second annual Biomedical HIV Prevention Summit will come to the Hilton New Orleans Riverside December 4 and 5, 2017. The Summit brings together hundreds of HIV advocates and experts from health departments, community based organizations, and health care providers around the country to learn how to best incorporate biomedical HIV prevention resources into their plans. “HIV prevention plans now have a wide assortment of techniques they must use, including the adoption of Treatment as Prevention (TasP) and Pre-Exposure Prophylaxis (PrEP),” said NMAC Executive Director Paul Kawata. “It’s not just about condom use anymore. Now that the CDC has said that an HIV-positive person with an undetectable viral load cannot transmit the virus to others, it’s clear that biomedical approaches must play a larger role in preventing new HIV infections. The Summit will give attendees the training and information they need to best incorporate the use of medications in both HIV-positive and HIV-negative people to stop the spread of the virus. The adoption of these approaches gives us a real path to potentially ending the epidemic.” Registration for the Summit closes November 3, 2017. For a full program of Summit events, activities, and speakers, visit www. biomedicalhivsummit.org.
A&U • NOVEMBER 2017
newsbreak AIDS Library of Philadelphia Turns 30 The AIDS Library of Philadelphia, the first lending library of its kind, celebrates its first thirty years of service to the HIV community on Friday, November 10, with a cocktail reception and the opening of the exhibit “Still Fighting for Our Lives,” featuring selections from the Philadelphia AIDS Library Graphics Collection. The event is free to the public but you must RSVP (please see below). The Library, formed in 1987 by activist Heshie Zinman and librarian John Cunningham, was initially devoted to getting critical life-saving information into the hands of those who needed it most at a time when accurate and up-to-date info about HIV/AIDS was difficult to come by. Since 1999, the AIDS Library has been part of Philadelphia FIGHT, a comprehensive health services organization providing primary care, consumer education, research, and advocacy for people living with HIV/AIDS and those at high risk (www.fight.org). While the Library still has a large collection of HIV/AIDS-specific materials, including non-fiction, memoir, fiction, social science, medical texts, and DVDs, it has expanded its collection over the last five years in two significant ways: It has increased its materials that address other common HIV co-morbidities such as diabetes, Hepatitis-C, cancer, heart disease, and others; and it has expanded its collection of materials by and for populations most impacted by the epidemic, and by health inequality more broadly today, such as trans people, the un- or under-insured, people living with poverty, people doing street-based sex work, and people who have been incarcerated. Today the Library, like other public libraries, is utilized as a community gathering space, expanding its services to include access to computers and computer classes, support creating a resume or applying for jobs, and short-term case management. The Library also publishes a variety of resource guides annually. The Library maintains trained librarians and staff who are deeply committed to providing a compassionate and stigma-free environment for Philadelphia’s HIV/AIDS community. For the cocktail reception, the Library has partnered with the William Way LGBT Community Center (www.waygay.org) as hosts. The reception will also celebrate the opening of the graphic arts exhibit “Still Fighting for Our Lives” featuring materials donated by the AIDS Library over its thirty-year history. The AIDS Library’s thirtieth anniversary cocktail reception and opening of the exhibit “Still Fighting for Our Lives” will be held on Friday, November 10, at the William Way LGBT Community Center at 1315 Spruce Street, Philadelphia, Pennsylvania 19107. The reception runs from 6:00 to 8:00 p.m.; doors open at 5:30 p.m. The event is free to the public but you must RSVP: bit.ly/registernow30th. The AIDS Library of Philadelphia is located at 1233 Locust Street, Philadelphia PA 19107, on the second floor. You can contact the Library by phone at (215) 985-4851 or log on to: www.aidslibrary.org.
photos by Holly Clark Photography
California’s HIV Decriminalization On October 6, California Governor Jerry Brown signed Senate Bill 239, reforming outdated HIV criminalization laws, lowering from a felony to a misdemeanor the crime of knowingly exposing a sexual partner to HIV without disclosing the infection. The measure also applies to those who give blood without telling the blood bank that they are HIV-positive. With Governor Brown’s signature, California becomes the third state to modernize HIV transmission laws. More than thirty U.S. states still have criminalization laws which were enacted in fear and, frankly, ignorance during the early years of the epidemic. Modern medicine allows those with HIV to live longer lives and effectively eliminates the possibility of transmission, according to state Sen. Scott Wiener (D-San Francisco) and Assemblyman Todd Gloria (D-San Diego), authors of the bill. “Today California took a major step toward treating HIV as a public health issue, instead of treating people living with HIV as criminals,” Wiener said. Congresswoman Barbara Lee (D-Ca, 13th District) [A&U, October 2012], who has sponsored bipartisan federal legislation, H.R. 1739, the REPEAL HIV Discrimination Act, which would provide a clear plan to help states modernize their HIV transmission laws, reflecting the major medical advances of the last few years, applauded California’s progress on this issue. “I am pleased that our efforts to modernize discriminatory HIV criminalization laws in California have succeeded, bringing long-overdue change to these punitive and counterproductive laws. HIV criminalization laws are based on bias, not science, and they perpetuate stigma and prejudice,” said Congresswoman Lee. “California has shown itself to be a leader once again, and I hope other states will follow our lead and get these harmful statutes off the books.” NOVEMBER 2017 • A&U
by Ruby Comer
As I was in New York City over the summer attending a workshop at GMHC, I decided to contact Damon. We met at his office in the 1100 block of Broadway in Manhattan, then walked across the street to Madison Square Park. The day was perspire-y humid. As I carry my picnic basket, I feel like Little Red Riding Hood, especially in my wide-brimmed sunbonnet. Damon thinks it is cute. We park our carcasses on a grassy knoll. Ruby Comer: [Spreading out the red-checkered table cloth on the ground under a breezy oak tree I inquire] Why be an HIV activist? Damon Jacobs: My interest in HIV activism and education came about as a direct consequence of my coming out in the mid-eighties. I saw the impact of AIDS on the mental health of my brothers and sisters who had lived through the worst of the crisis. It became clear to me that helping my community meant more than just sitting in an office listening. It meant actively fighting the homophobia that was creating so much death and pain, as well as educating people about how to experience sexual pleasure while reducing risk. We need more peeps like you, Jacobs. Go ahead and open the picnic basket. [He does and utters in glee] Peanut butter and jelly! My fave. I was hoping you’d say that, and the products are from Trader Joe’s…and organic, too! [He giggles with delight.] So, who has inspired you the most? Well, during the last months of his life in 1990, Vito Russo taught a class at my college on his book The Celluloid Closet [and the movie version was later] co-produced and narrated by Lily Tomlin. He would teach about movies and play clips about gay and lesbian representation in Hollywood films. Inevitably, the video
would fail to play, and we’d just be sitting there in the auditorium, waiting. Vito would fill in the gaps by telling us stories about his New York activism, about his deceased partner Jeffrey, and about the progression of AIDS in his own body. Oh gosh, yes. I remember Vito quite well. There was a doc made on him several years back. In one of the last weeks of class, Vito reflected on his life, how he enjoyed partying, but wished he hadn’t wasted so much of his time “making small talk at bullshit cocktail parties.” He died a few months later. To this day I can see him and hear him so clearly saying these words. Impactful. [Shaking my head in awe.] Why did this prominent activist/author choose to spend the last few months of his life with a group of college students? A&U • NOVEMBER 2017
Ruby illustration by Davidd Batalon; all photos by Ben Strothmann
’all may not know, but Ms. Ruby has her doctorate in psychology. Okay, I know what you might be tittering: She shrinks heads. In the late eighties, the heyday of the AIDS epidemic, I counseled individuals who were newly diagnosed. Of course at that time, an AIDS diagnosis meant death. My patients taught me a lot, about myself, and about dying. One big lesson I learned is that death is No Big Deal. More on that in another column. Late last year while working with the Desert AIDS Project in Palm Springs, I attended a summit and met fellow therapist, Damon Jacobs, who works with many of these issues in his clinical practice in New York and is an active voice in our community. I liked Damon straight away. In practice for nearly fifteen years, Damon knew at five years old that he wanted to be a psychotherapist! The author of two books, Rational Relating and Absolutely Shouldless (a must-read. Truly.), he describes himself as an HIV prevention specialist who focuses on health, love, and pleasure. Re-read that sentence again. I don’t know of any other professional doing this specific kind of work. Damon began his mission of HIV prevention in 1991, by frequenting bars and clubs and setting up a table to share information. Mister Jacobs has championed PrEP and has discussed its efficacy in such media outlets as The New York Times, MSNBC, Huffington Post, and NPR. He also conducts training, workshops, and lectures. He speaks searingly from his transparent heart, having started on PrEP in 2011. Until the age of eighteen, this inspirational chap was reared in Culver City, California (not far from my digs), then, after attending college in Santa Cruz, moved to San Francisco. Moving to New York in 2005, Damon also extends his knowledge out onto the Internet waves through FaceBook.
It was about a lot more than movies. He was there to motivate, to inspire, to have us act up, fight back, and not waste so much time “making small talk at bullshit cocktail parties.” He was the first person I ever met, hugged, and then lost to AIDS. Vito was the first person who got me interested and active in prevention. You’ve known quite a few who have succumbed to AIDS…. Throughout the following years, I got to know, love, and lose many folks to AIDS. Each and every time, it was a reminder of how necessary it is to reach people and prevent more infections—and more death. When I was studying for my license—many moons ago!—there were pros and cons on self-revealing to a patient in therapy. What’s your take? I’m up front and out because I believe that is the most effective way to teach. A dear friend named Ntombi Howell said to me in 1997, “A liberal is someone who talks about ‘them.’ An ally is someone who talks about ‘us.’” That helped me to realize that my life had been shaped and altered by people like Vito Russo and Ntombi, who spoke and taught based on their own personal and private struggles. The more specific they were, the more universal their message. So I realized then that if I was given the privilege and platform to speak publicly, there had to be a personal component.
But even then it was clear that no one who took the drug four or more times a week became HIV-positive. That was enough for me to begin using it for myself. Now, of course, there are over thirty studies including more than 8,000 participants who have all come to the same conclusion: PrEP works. We never had those kind of figures for condoms, we just told people to wear them based on our best guess that they worked to prevent HIV, despite there being only one study in 1989 that suggested this was true.
tized by the AIDS crisis. [He pops the tab on a Dr. Zevia soda I brought—a naturally flavored soft drink.] I have never experienced a physical or medical side effect. I’ve always worked with doctors who follow standard protocol and draw my blood at least twice a year, to make sure that Truvada isn’t hurting my kidneys, or that there are any side effects that I could not detect. So far, there are no side effects or negative impact. This does not come as a surprise, given that Truvada is considered to be safe as a daily aspirin.
Point taken. Address the fact that there are no long-term studies. There may not be long-term studies about the drug itself, but there are certainly plenty of studies that have been
You know, I heard you mention a couple of times…PrEP-O-LICIOUS [stuttering to emit the words]. Whaat?! [He chuckles.] PrEP-O-Licious was an occasion that came out of the gorgeous mind of Honey LaBronx, née Ben Strothman. She came to me in 2013 in utter disbelief that PrEP had been approved by the FDA the prior year, but no agencies or organizations or clinics in New York City would share this information with their at-risk patients. We created this event to use entertainment and drag shows as a means to share information and resources with the greater NYC community.
That makes pure sense. Plus, I think talking only about facts is boring. [Bobbing my head furiously!] A robot can do that. But nothing replaces the salient impact of having another human being tell you their story.
conducted about the medications in the drug, tenofovir and emtricitabine, that span well over twenty years. Remember, Truvada itself was originally approved by the FDA for HIV treatment in 2004. Tenofovir and emtricitabine were both patented as HIV treatments medications in 1996. So although the indication that they can be used as HIV prevention wasn’t approved until 2012, the medications themselves are not new.
[With a serving spoon I dab some broccoli slaw onto my paper plate.] Why do you so strongly believe in PrEP? I strongly believe in PrEP because the science has clearly demonstrated over and over that it works so well. In 2011, I didn’t feel that strongly when I began using it myself. Back then, the only solid information about PrEP came from [the] iPrEx [study], and that was still a work in process.
Have you experienced any side effects, Damon? I’ve been using Truvada consistently for nearly six years. During that time I’ve only had two major side effects: Great sex, and much improved sleep. [He dons a huge sparkling smile, as do I.] I say that because we don’t tend to remember that positive impact PrEP has on enhancing the quality of life for those of us who were trauma-
NOVEMBER 2017 • A&U
What a fun idea. I like your style of entertaining as a tool for education. We did these two years in a row. The first time in 2014 was a resounding success. The second time in 2015 was not so much. [He ponders.] Ya know Ruby, it’s that one on one approach that has really made the difference, I believe, in getting the word out about PrEP, and helping people learn and decide if this is right for them. I like your method. You said to me a while back that you haven’t asked anyone to use a condom since you began taking PrEP. Yes indeed. I really was one of those rare folks who only used condoms with new sexual partners in the late nineties, and most of the 2000s. But that started slipping in the later 2000s, especially following a break-up in 2010. I was having these incredibly pleasurable experiences of feeling a man inside me, accompanied by tremendous terror weeks and months after. All of a sudden a Frisbee splats right continued on page 61
Hank Trout maybe the glass really is half-empty, & may-
t seems that every time I log on to Facebook and check the activity on the various pages of interest to us Long-Term HIV/ AIDS Survivors, or just my own timeline, one or another of my friends has posted some cheery meme or another. These are generally vague, feel-good slogans about subjects like “gratitude,” featuring a message such as, No Matter How Bad Things Get, There’s Always Something to Be Grateful For. I wish I could believe that. No. Let me rephrase that. I almost wish that I could comfort myself with New Age bromides like that—but I just cannot do it. These memes, and the different responses to the recent death of Louise Hay (a savior or a charlatan? a prophet or just another unscrupulous silver-tongued money machine, peddling snake oil to the gullible?), have got me remembering the desperation with which so many of us clung to every imaginable shred of hope during the worst of the Plague Years. No matter how counterintuitive or even downright irrational and illogical the proffered hope, we were so desperate to believe that something, anything could stop the suffering and dying that we eagerly, willfully blinded ourselves and went along. I recall how hungrily we placed our faith sometimes in actual snake oil (e.g., “Chinese cucumber extract”), sometimes in “natural” treatments and cures, sometimes in the supernatural (including religion), and oftentimes in high-minded lingo-heavy psycho-babble intended somehow to enlighten and/or sustain us. I also remember how brutally, how routinely those brittle hopes, all of them, were smashed into useless shards at our feet, making fools of us and of our desperation. I have often wondered whether we survivors, even more than other folks, do ourselves harm by creating false hopes, anaesthetizing ourselves with semantic gobbledygook, willfully deluding ourselves with feel-good placebos that inhibit our ability to deal with right-now-here-it-is Reality. For myself and most of the survivors I know, daily life resembles nothing else so much as a never-ending game of life-or-
death Whack-A-Mole. We deal with one mind-numbing problem after another as their pesky little heads relentlessly pop up anew—fighting off new health threats, new infections, new organ failures; struggling to stay abreast of frequently changing rules and confusing procedures for receiving ADAP, SSDI, and other benefits; worrying about our healthcare under an administration hell-bent on cutting funding for HIV; navigating life at or below the poverty level and the attendant worries about housing, nutrition, and medical bills; the continuing grief and PTSD from the losses we’ve endured and, as we age, the renewed grief when one of our remaining friends dies. Smack one mole down, another instantly shoots up and spits bile in your face. I simply do not understand how people can (or would even want to) maintain an upbeat sense of “gratitude” and “positivity” while facing all of those moles. I do not think it can be done without seriously deluding and possibly damaging oneself with nonsense. In her book Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America, Barbara Ehrenreich posits that relentless positive thinking, a uniquely American avocation, it seems, might actually be harmful to us, might “dim our ability to fend off real threats” by, among other things, magnifying our “reflexive capacity for dismissing disturbing news” in favor of “magical thinking.” Even in the midst of debilitating illness and catastrophic disasters, both natural and manmade, we are inundated with admonitions that we remain “grateful” and “positive,” as though a constantly positive outlook, no matter the circumstances, were not only natural but normative, proscriptive—the way we should live. Maybe it’s just me, but telling a cancer patient who is enduring her fourth session of debilitating chemo therapy to “remember to be grateful” seems to be just downright cruel—like admonishing the poor to be “thrifty,” the weak to “man up.” Personally, I prefer reality-based thinking. I function better seeing things as they are, for what they are, without the filter of some gauzy “philosophy.” I lived through enough pointless, destructive, even deadly magical thinking during the Plague Years.
I’ve no tolerance for any of it now. Many of my friends—intelligent, rational, compassionate people whom I genuinely love, including my fiancé Rick!— have culled from Louise Hay, Rhonda Byrne, Marianne Williamson, and other writers various bits and pieces of thinking that bring them comfort and with which they have built a framework within which to understand the world. That is, I surmise, the purpose of New Agey bromides, to comfort and console, to make sense of a world that inflicts so much pain on us. And my purpose here is not to deny that sense of comfort to anyone—even though I will never understand it and even if I might from time to time struggle to refrain from poking holes in it. Instead, I ask that they (and you) consider: Maybe the glass really is half-empty, not half-full, and maybe it’s okay to acknowledge that. Maybe we don’t have to “look on the bright side” all the time. Instead of placating ourselves, always consoling ourselves and pretending to be grateful that the glass is half full, maybe recognizing and accepting that the glass really is half empty can be the first step in correcting the problem: Refill the glass. Now, there’s a meme I can get behind: Refill. The. Glass. Hank Trout, Editor at Large, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-seven-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter. A&U • NOVEMBER 2017
illustration by Timothy J. Haines
be that’s okay
SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN
LONG BEFORE TAKEOFF. Proud Partner of the Elizabeth Taylor AIDS Foundation.
Particles of Light
things scientists should tell you when they give you your labs
illustration by Timothy J. Haines
hree billion light years away there is a blue white dwarf star that is dying. It is burning itself super nova. It will explode, it will die, and in another three billion years it will be made into another star. Because nothing in the universe disappears. Everything is connected: Everything that is, has always been—and will always be. Energy and matter and ideas DO NOT DIE! They just reimagine themselves.... But before that star goes black enough for gravity to pull its light back, its last burst of white travels from galaxy, to constellation, to solar system, to this little old cluster of rock where it finds me naked on a stage in Hollywood. I am dressed in jeans and a backwards cap, and I am wearing my favorite blue canvas shoes... but I am naked just the same. And the spotlight is bright and pink and blinding; and my heart is beating a Taiko beat... and I am casting a blood spell with words and song and the archaic cryptography communicated with a gesticulation of the fingers and the arch of an eyebrow that only performers know. I am an HIV-positive, Black, Queer, Gay, Fem, Bottom, Cis performer. And the audience is mine. And the bones in my face have started to change shape; and the dead are resurrected at the call of my voice; and yellow, pink, and purple glowing butterflies have appeared out of thin air, and are fluttering around the back room of the theater/ bar. And suddenly, time and place don’t matter, and I am alone on a stage—three billion miles away—telling a story about a bathhouse, and a boy and his mother, and the existence of God. And God is there somewhere in the back seat. And the audience is watching me burn bright blue white light, go super nova, die, and then turn black enough to pull my light back...and the stage goes dark. I bow goodnight. And the room explodes into applause. And I am alive again. Because nothing here ceases to exist; it NOVEMBER 2017 • A&U
just begins to become again. I believe that we are meant to create. We are meant to imagine. We are meant to perform things on a stage. I believe that we are creatures with the spark of the Divine designed into our back pockets: We are meant to do great and magical things! And we are also meant to crash and burn sometimes. Lately I’ve been making things happen: Saying yes to projects, and collaborating with anyone who will ask: Writing scripts with trans guys in New York, performing on stages all over L.A., doing guest bits alongside television stars, writing in homemade production workshops with some of “Hollywood Up and Coming Creatives,” and just generally trying to be an all-around bad ass.... And I’m feeling good about it. (And yup, I’m still writing that got-dang Great American Novel—I keep telling myself that “brilliance” takes time. It’s been four years.) But the best part is that I AM HERE and able to do it. This is what it means to be alive! This is what it means to have your hat in the ring—to have blood pumping through your veins. This is what it means to be made of stars... It means that (little ole) you gets to alter the trajectory of light and literally reconstruct the molecules of the Universe. And yet some of us are
sitting in our apartments worried scared about what some anonymous stranger on the Internet three Billion miles away thinks about our T-cell count. Or our disease—or our race—or our penis size—or our X and Y chromosome make up...or any other little bit of dust particles. My mother died from eating too much sugar, well not really; but kind of. And a distant friend of mine relapsed on crystal meth, and then mysteriously ceased to exist, well not really; but kind of. And on the news every day there is some ridiculous gun atrocity that takes out dozens upon dozens at a time... It’s awful and tragic. Anyone of us can go at any time, for any reason—and here we are, with this little tiny disease, that eats away at our T cells. But it hasn’t taken us yet. WE ARE STILL HERE! And we can still take the world by storm. So what are you going to do about it? What magic are you going to make? What spell are you in the process of casting? Love and Light. Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Nonsense can be found at www. justwords.tumblr.com.
Justin B. Terry-Smith, MPH, has been fighting the good fight since 1999. He’s garnered recognition and awards for his work, but he’s more concerned about looking for new ways to transform society for the better than resting on his laurels. He started up in gay rights and HIV activism in 2005, published an HIV-themed children’s book, I Have A Secret (Creative House Press) in 2011, and created his own award-winning video blog called, “Justin’s HIV Journal”: justinshivjournal. blogspot.com. Presently, he is working toward his doctorate in public health. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at firstname.lastname@example.org.
photo by Don Harris © Don Harris Photographics, LLC. all rights reserved
ersons living with HIV must take extra care of their bodies and minds. I have this saying I repeat to myself when things don’t go as well as I think they should go after a depressing doctor’s appointment. “My body wasn’t given the ability to fight off a virus constantly.” This includes one’s oral health; yes, I’m talking about your teeth and gums, people. People may not know this but there are certain things of which people living with HIV need to stay conscious and cautious. As several oral health issues can show up with people who are living with HIV, here are eight facts that one must know about HIV and the mouth. (Remember that, with any medical condition, you should consult a physician, preferably someone who specializes in HIV medicine.) 1. Problem: Oral warts (human papillomavirus, or HPV) can be transmitted sexually. Solution: The warts in your mouth can be frozen off or cut out. 2. Problem: Dry mouth and tooth decay can happen to anyone. Habits such as drinking coffee, alcohol, carbonated drinks, high sugar intake, and smoking cigarettes can give someone dry mouth and tooth decay. Solution: Drink water! Water can help cleanse the mouth and body, prevent dry mouth and cleanse your kidneys and liver, whose health is paramount when living with HIV. 3. Problem: Candidiasis (thrush) is
NOVEMBER 2017 • A&U
basically a fungus or yeast that grows in your mouth. The symptoms are white lumps or red rashes inside your mouth. It is mostly found on the inside of your cheeks. Thrush can be very painful but there is hope. Solution: Talk to your doctor about being prescribed anti-fungal medicines. Some medicine come in gel form. These medicines may ease your pain, but thrush will have to come out of your system on its own. 4. Problem: Canker sores (apthous ulcers) are open sores in your mouth and the back of your throat. They are usually caused by the types of food people eat, i.e., tomatoes, juices or anything acidic, and spicy foods. Solution: Some creams and gels work and, along with drinking water, should help soothe the pain. 5. Problem: Cold sores (herpes simplex type 1) happen to just about everyone, but with people infected with HIV the sores come back more often and more severe than in people who do not have HIV. Solution: Antiviral drugs are available to manage the symptoms and reduce the longevity and intensity of the outbreaks. 6. Problem: Gum disease (gingivitis) is a major problem for people living with HIV. This condition causes pain and bleeding, and, if it goes unchecked by a dentist, then teeth will decay and fall out. Solution: Brush your teeth daily. However, it is just as important to floss. When you first start this process, flossing might
hurt or your gums may bleed but it will subside in time. Try to floss every night before you go to bed. The number-one thing that is a turn off to any man/woman is bad breath. 7. Problem: Kaposi’s sarcoma (KS), a type of cancer, can look like dark purple spots on the gums and on the back of the tongue. Solution: When a HIV-positive person goes on antiretroviral therapy, the chance of having KS decreases exponentially. 8. Problem: Shingles (herpes zoster) can show up in the body as a painful rash, blisters, or lesions, which can show up on one side of the body, usually on the face, which includes the mouth, ears, pharynx (nasal or oral cavity), ears and larynx or torso area. Solution: In 2006, the Food and Drug Administration (FDA) approved a vaccine called Zostavax. Zostavax is a live, attenuated vaccine that contains the same strain of virus. These conditions are all potentially very serious and you should see a dentist or doctor immediately to stay on top of your oral health. It’s important! As you grow older with HIV, the virus could grow stronger. Preventative measures should be taken to ensure good healthy teeth and gums. Brush your teeth every day and try to floss before bed. I know that I sound like a toothpaste commercial, but oral health is a serious issue for everyone but especially people living with HIV. ◊
WHAT IS GENVOYA®? GENVOYA is a 1-pill, once-a-day prescription medicine used to treat HIV-1 in people 12 years and older who weigh at least 77 pounds. It can either be used in people who are starting HIV-1 treatment and have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements. These include having an undetectable viral load (less than 50 copies/mL) for 6 months or more on their current HIV-1 treatment. GENVOYA combines 4 medicines into 1 pill taken once a day with food. GENVOYA is a complete HIV-1 treatment and should not be used with other HIV-1 medicines. GENVOYA does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking GENVOYA. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body ﬂuids. Never reuse or share needles or other items that have body ﬂuids on them.
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about GENVOYA?
GENVOYA may cause serious side effects: • Worsening of hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking GENVOYA, your HBV may suddenly get worse. Do not stop taking GENVOYA without ﬁrst talking to your healthcare provider, as they will need to monitor your health. Who should not take GENVOYA?
Do not take GENVOYA if you take: • Certain prescription medicines for other conditions. It is important to ask your healthcare provider or pharmacist about medicines that should not be taken with GENVOYA. Do not start a new medicine without telling your healthcare provider. • The herbal supplement St. John’s wort. • Any other medicines to treat HIV-1 infection. What are the other possible side effects of GENVOYA?
Serious side effects of GENVOYA may also include: • Changes in your immune system. Your immune system may get stronger and begin to ﬁght infections. Tell your healthcare provider if you have any new symptoms after you start taking GENVOYA.
• Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking GENVOYA. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effect of GENVOYA is nausea. Tell your healthcare provider if you have any side effects that bother you or don’t go away. What should I tell my healthcare provider before taking GENVOYA?
• All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how GENVOYA works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Ask your healthcare provider if it is safe to take GENVOYA with all of your other medicines. • If you take antacids. Take antacids at least 2 hours before or after you take GENVOYA. • If you are pregnant or plan to become pregnant. It is not known if GENVOYA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking GENVOYA. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Important Facts about GENVOYA, including important warnings, on the following page.
Ask your healthcare provider if GENVOYA is right for you. GENVOYA.com
GENVOYA does not cure HIV-1 or AIDS.
Take care of what matters mostâ€”you. GENVOYA is a 1-pill, once-a-day complete HIV-1 treatment for people who are either new to treatment or people whose healthcare provider determines they can replace their current HIV-1 medicines with GENVOYA.
IMPORTANT FACTS This is only a brief summary of important information about GENVOYA® and does not replace talking to your healthcare provider about your condition and your treatment.
( jen-VOY-uh ) MOST IMPORTANT INFORMATION ABOUT GENVOYA
POSSIBLE SIDE EFFECTS OF GENVOYA
GENVOYA may cause serious side effects, including:
GENVOYA can cause serious side effects, including:
Worsening of hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking GENVOYA. Do not stop taking GENVOYA without first talking to your healthcare provider, as they will need to check your health regularly for several months.
• • • •
ABOUT GENVOYA •
GENVOYA is a prescription medicine used to treat HIV-1 in people 12 years of age and older who weigh at least 77 pounds and have never taken HIV-1 medicines before. GENVOYA can also be used to replace current HIV-1 medicines for some people who have an undetectable viral load (less than 50 copies/mL of virus in their blood), and have been on the same HIV-1 medicines for at least 6 months and have never failed HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements. GENVOYA does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.
Do NOT take GENVOYA if you: • Take a medicine that contains: alfuzosin (Uroxatral®), carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), cisapride (Propulsid®, Propulsid Quicksolv®), dihydroergotamine (D.H.E. 45®, Migranal®), ergotamine (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), lovastatin (Advicor®, Altoprev®, Mevacor®), lurasidone (Latuda®), methylergonovine (Ergotrate®, Methergine®), midazolam (when taken by mouth), phenobarbital (Luminal®), phenytoin (Dilantin®, Phenytek®), pimozide (Orap®), rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®), sildenafil when used for lung problems (Revatio®), simvastatin (Simcor®, Vytorin®, Zocor®), or triazolam (Halcion®). •
Take the herbal supplement St. John’s wort.
Take any other HIV-1 medicines at the same time.
GET MORE INFORMATION •
This is only a brief summary of important information about GENVOYA. Talk to your healthcare provider or pharmacist to learn more. Go to GENVOYA.com or call 1-800-GILEAD-5 If you need help paying for your medicine, visit GENVOYA. com for program information.
Those in the “Most Important Information About GENVOYA” section. Changes in your immune system. New or worse kidney problems, including kidney failure. Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.
Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effect of GENVOYA is nausea. These are not all the possible side effects of GENVOYA. Tell your healthcare provider right away if you have any new symptoms while taking GENVOYA. Your healthcare provider will need to do tests to monitor your health before and during treatment with GENVOYA. •
BEFORE TAKING GENVOYA Tell your healthcare provider if you: • Have or have had any kidney or liver problems, including hepatitis infection. • Have any other medical condition. • Are pregnant or plan to become pregnant. • Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-thecounter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that should not be taken with GENVOYA.
HOW TO TAKE GENVOYA • •
GENVOYA is a complete one pill, once a day HIV-1 medicine. Take GENVOYA with food.
GENVOYA, the GENVOYA Logo, LOVE WHAT’S INSIDE, SHOW YOUR POWER, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: April 2017 © 2017 Gilead Sciences, Inc. All rights reserved. GENC0141 04/17
Spiritual Not Religious
losing my religion helped me find my faith
illustration by Timothy J. Haines
lack LGBTQ folks are often trying to find a place that they can call home. For us, it can be a tough task when much of the backbone of Black community is rooted in anti-lgbtq principle and practice. From the Barbershop to the Black Church, we don’t have much of a safe haven for the nourishment of our spirits outside of the safe environments we created within LGBTQ circles of community. Sometimes, that isn’t enough, and the soul deserves as much of a relationship to God and the universe as anyone else that is deemed acceptable in the eyes of religion. For me this journey has been a lifetime in the making. I was five when I first started going to Sunday school, a tradition that had stood in my family going generations back. My introduction to the church was one of a safe haven for me, where I could exist without judgment, or so I thought. It kept me out of trouble, and gave me things to do throughout the week, building my relationship with God, faith, and community. It is honestly the first place that my activism began, as I learned that being a servant of the Lord meant I was to be a servant to the people; something I dedicate my life work to doing. As I grew older, my responsibility to church continued to grow as well. I joined the church choir, with the requirement to sing monthly on Third Sunday. Weekly rehearsals became a place of social gathering as church kids became some of my closest friends. I participated in church events, joined the Youth Ministry and even had a year as a liturgical dancer. I was thirteen when my grandmother and I started a soup kitchen to feed the sick and shut-in at our church. This became my weekly thing to do for the next four years as part of the requirement for community service at my high school. The church was a huge part of my life, and it centered me and made me feel comfortable in the skin I was in. I would soon learn though that in this once sacred safe haven I would become only a memory of a version of myself, one that could only be accepted by the institution at the suppression of my identity. It was senior year when I saw just how unsafe the church could be. Up for a
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scholarship with another classmate who also attended the church, a controversy erupted because we were both awarded the same amount. A member of that person’s family questioned in a public meeting in front of my grandmother and mother whether I had “done enough” for the church to deserve any type of reward. Now I’m a be honest, by then I wasn’t a Sunday morning regular. But I learned that the real work of ministry often happens on the days when no one is around to see it. I had dedicated four years of my Saturdays to helping our church, only to be deemed as less-than because I wasn’t present for Sunday services. This one experience would be the start of my awakening to the journey of self-discovery outside the institution of the church. By the time I was in my twenties, church was not a thing for me anymore. I only participated when forced to and I had no desire to sit in a room where I was tolerated, condemned, and never accepted. However, I did go back to my roots of community work and started working with the young kids on how to step. It gave me great joy to be doing that type of work again, spirit-nourishing without having to compromise who I was. I was so happy with this work, that I even tried to join the church again. Big Mistake. In a moment of crisis, I spoke with a religious leader regarding the issues I was having because of my sexuality and being in my fraternity. I was told that my lifestyle was wrong and that although I could be accepted in the eyes of God that man may not be so moved to do the same. It was around that time I was diagnosed with HIV, and I knew that for me, I had to find an alternative to feed my spirit. Losing the church during such a hard time in my life was troubling to say the least. The loneliness I felt dealing with my diagnosis, which intersected with the assumed loss of God, was enough to push me over the edge. Thankfully, I was always raised to know that there are always additional op-
tions for salvation if you just do the work. I began researching alternate methods of health and spirituality, when I landed on Yoruba and many of the principles surrounding it. I also began “smudging,” a process involving the lighting of sage and chanting away negative energies while opening one’s self up to light and healing. Holistic health was another approach I took to finding spirituality and healing as it took into account the mind, body, and spirit; three things necessary in my journey to health and wellness. My diagnosis then became one of the smaller parts of my existence, as my spiritual journey led me to working on things I could change while managing the things out of my control. The experience also broadened my understanding of the universe being suffice, and that belief in a higher power opens one up to a spiritual relationship where church is not needed. I gained salvation outside of religion, and have been better for it. I write this to say that there isn’t one way to be saved. For those who need the church, go to church. For those who don’t, trust when I say you have options for spiritual healing. Do the research. George M. Johnson is a black queer journalist and activist. He has written for Ebony, TheGrio, JET, Teen Vogue, Huffington Post, Black Youth Project, and several HIV publications. Follow him on Twitter @iamgmjohnson.
The Bravest Girl I Know
’ve had the joy of knowing some incredible people in my life. One of the gutsiest, most unique women I’ve known was at a very tender age. We were freshmen in a small high school in a small Ohio town together in 1984. As a young man, I was pretty much terrified of everything. Harassed at school for being different and with an abysmal home life due to an abusive stepfather, I do not recall my teenage years fondly. One saving grace was my friend Tiffany and her circle of friends. They were the popular girls; not just popular, they were unique and they saw something unique in me. We listened to the trendiest music, wore the trendiest clothes, and were way ahead of the times in what was essentially a small farming community. Even in this crowd, Tiffany stood out. She was the ultimate preppy with a penchant for the cutting edge of pop music. She was fearless. A high achiever, there was one thing that everyone understood about her; whatever she would go on to do in her life, she would be a huge success. All the popular girls loved me, but they weren’t afraid to love me because of her. Their football-playing boyfriends couldn’t, or were just too cool to, dance at the school dances and house parties that our social lives revolved around, but I could and I did. My favorite partner was Tiffany. She didn’t often have a boyfriend. Something about her was too good for these small town boys. They thought small and Tiffany only thought big. We would spend hours in her bedroom poring over the latest issues of Interview and Vanity Fair magazines, planning our future lives in Manhattan. We would share a loft in SoHo and spent much time planning how we would decorate it. We talked about the clubs where we would dance, the theater we would see, and the top restaurants where we would dine. But Tiffany wasn’t all style. She was a brilliant student who was politically very aware. She was a die-hard Democrat and a constant critic of Reagan in a state, and town, that was very conservative. She stood up for what was right and came to my defense constantly when I was being marginalized and tormented by the bullies of our school. Because of her, I had the
sworn, if reluctant, protection of every jock in our high school. This made navigating what was a battlefield for me so much easier during my freshman year and the first semester of my sophomore year (my family, at that time relocated out-of-state). It was a Social Studies class report, however, that would really show this girl’s true mettle. It was to be on a current event and Tiffany took on the extra credit from presenting her project orally. Painfully shy myself, I thought this alone was remarkably brave. But it would be her choice of topic that would really show what Tiffany was made of and what she stood for. I had heard the disturbing reports in the media myself although they were hardly considered worthy of being front-page news at the time. There was a mysterious disease killing the gay men of cities like New York and San Francisco. These stories gave me chills. It was even less noted in our small community because it was “their problem, not ours,” and the consensus was that the victims of this disease fully deserved what they got. Both the disease and the public’s disdainful response troubled me greatly, but it infuriated young Tiffany. This was 1984, before the death of Rock Hudson and long before anyone on the national stage but the remarkable Elizabeth Taylor was calling attention to the issue. Well, Elizabeth and Tiffany that is. She decided, with both barrels loaded, to make this tragic disease the subject of her oral report, a gutsy move for a smalltown girl in Ohio that year. Luckily, we had a very liberal and open-minded Social Studies teacher who somehow agreed, at much risk to his job, to let Tiffany proceed. AIDS had a name now, and she was determined to explain its horrors to a completely clueless bunch of ninth graders. Looking back, I marvel at the courage and the sheer guts this took. In the environment we lived in, at this time, this disease was simply not discussed. As I said, when it was it was more with derision for its victims than any
shred of compassion. I’d heard as much at home myself, “That a bunch of queers and drug addicts well deserved what they got!” was my father’s two cents. Tiffany wasn’t one to go into something poorly prepared. At a time when real information about the plague was still scarce, she dissimilated the most current and factual information. She didn’t at any time blame this problem on its victims but spoke to the fact that it was in the realm of possibility that the disease could spread and affect many more. I think the other thing that amazes me looking back now, is the fact that there wasn’t more fallout from Tiffany’s report. If any outraged parents called the school to protest, we didn’t hear of it. Tiffany had something in that small community. Some would call it popularity, but Tiffany saw what she had as more of a platform, a platform she saw as both a privilege and a responsibility. I’ve often wondered over the years as to what great things she went on to do. Whatever she did, I’m certain that she continued to stand up for what is right and never once took the easier path in any matter of importance. John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for thirteen years and he is currently at work on his first novel, Fools Rush In. His fiction has been published this month in the ImageOutWrite literary journal. Follow him on Twitter @JohnFrancisleo2. A&U • NOVEMBER 2017
illustration by Timothy J. Haines
one person’s courage in the ninth grade taught me more about fighting against aids than school did
e v i it
r d o d a ol c
Through provocatively staged, mostly boudoir tableaux awash in melding jewel-toned shards, young photographer Eric Tenorio refracts the complexity of life experience and our sexual beings with the extra dimensions of color
by Sean Black
ur senses work together to heighten and inform our complex human existence, from pleasure to protection. So naturally when one of these senses (hearing, in this case) is threatened, our complete sensory armor becomes engaged. The word “stigma” resonates loudly for me as well as most of us who are HIV-positive. Attuned to its enunciation and significance around disease, we, members of the HIV-positive community, have reclaimed the topic’s power by discussing it frequently, in activist fashion, to openly confront the ways in which our existence, safety, and basic rights of humanity are maligned. Late this past spring, while preparing for an evening class at a community college, where I teach Darkroom and The History of Photography, the word “stigma” entered my audible reach and I turned towards an open office door. Beyond the doorframe, I noticed my lab tech and colleague Tony with a youthful, fresh-faced, twenty-something man, whom I’d never seen before. Eric Tenorio, a former Chaffey College student, had returned from New York City where he had gone off to earn a BFA in photography from the top-ranking art institution, The School of the Visual Arts (SVA). Like most recent returning post-grads, Eric was seeking employment opportunities, scouting options and returning to the familiarity of his hometown and first alma mater. Tony noticed my glance and took the cue to introduce the two of us. Unsure of how the word “stigma” had been used or to what extent that it was applied in their discussion, I took the introduction as an opportunity to learn more about Eric and his work as a former student. My pricked-up ears led me to off-guarded visual delight. Eric Tenorio is an out, queer male of color (Filipino) finding ways to further his alluring post-graduate work. Taking time to enlighten me, he shared and discussed his work—intriguing self-portraits showcased aptly in his most-recent series “Dimensions,” which I found quite powerful. At only twenty-seven years of age, Tenorio conceptualizes, stages, and presents Untitled, 2016, archival inkjet a mature body of work, comprising elegant nudes print, dimensions variable bathed with colored gels and colored light bulbs,
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Untitled 1, 2015, archival inkjet print, dimensions variable in solitude or paired or grouped with a diversity of dissimilar MSM subjects, most older in age than Tenorio himself, which he holds speaks to the multi-generational bonds of the LGBT community. There is, at first glance, a Fauvist sensibility appropriated from genre paintings of Post-Impressionism with the use of wild, saturated, beastly colors. Calling to memory Matisse’s Blue Nude (1907) or The Red Studio (1911), the spaces Tenorio chooses are intimate living spaces—a dorm room, a sparse studio abode, a closet, a bathroom, a hallway, all illuminated in brilliant colors, spaces all-too-familiar to green art students eking out their early creative works and making due with available privacy and square-footage. There, too, is a strong presence akin to the work of 1960s and 1970s experimental masters of post mid-century color photography like Ernst Haas, Franco Rubartelli, Naomi Savage, John Svoboda, and the recently deceased Pete Turner. Glowing, thrusting nudes interspersed with more modestly hand-concealed groupings—Tenorio’s synthetic orgies are titillating and literally
sublime. And saturated with color. Additive Color Theory was introduced in 1861 by James Clerk Maxwell, a thirty-year-old Kings College (London) professor. During a lecture at London’s Royal Institution, Maxwell displayed, through the use of sandwiched pictures of tartan, how our naked eye is sensitive to only three colors in the visible spectrum, red, green and blue (the additive or RGB color model) and how then all other colors including black and white are blends of these primary hues. Yellow, in fact, is a blend of red and green instead of green being the sum of blue and yellow. The “Color” volume from my Time/Life Library of Photography (1970) poignantly offered, “the single physical dimension of color paradoxically becomes many dimensions in a photograph, multiplying a picture’s impact in several different ways.” This contemplative, emotional impact Tenorio’s work creates for me includes restlessness, romance, pride, sensuality and a particular brooding sadness, all indicative of how color not only has the power to suggest time but also its ability to exhume subtleties of personality and emotions. Tenorio’s color-drenched chambers are home to the negotiations of love and dreams, pain and angst, disclosure and resolution. The colors
allow onlookers to wander through gateways of the mind’s eye, to meander while psychologically confronting internal conflict; for me, my own mixed feelings of inadequacy, shame, and regret along with my positive qualities while living with HIV. The color-play, in tight quarters, grants me space to heal by reflecting and engaging in a visualized self-love as noted by the acts of posing, caressing, and touching exemplified in Tenorio’s gentle work. “Art is a creative interpretation of reality which communicates beliefs and emotion, and provokes questions and further discussions. Art makes the viewer confront things they wouldn’t normally confront, especially within themselves. I use photography to create my own version of reality,” shares Tenorio. His highly colorized and thus altered realities are bathed in shades of Ruby, Emerald, Tanzanite, Citrine and Sapphire, all whispering what each of us wants to hear, imagine, or interpret. For me, the prisms of light subtly eject stigma, chasing it away in the recesses of the ambiguity of space and at the interstices where shades conjoin. His images Self-Portrait in Window, (2016) and Untitled 2, (2015) both present Tenorio in usually tight spaces, which creates tension for me, a sense of claustrophobia. The hard-candy A&U • NOVEMBER 2017
A&U Gallery veneer adds a sticky sweet coating to Tenorio’s I would discuss it in a way that I always your own personal style and you can start cramped, seated, and classically full-figured do, that with my work my use of color is addto create work that really connects and form just behind bars. Tenorio’s openness ing another layer, another conversation to it. I flows together. And also to just hustle, huswith his nude body in stages of dance while want my use of color to spark an emotion or tle, hustle, and more hustle. Keep working upright, subverts notions of the reclining a reaction when you look at my work and not hard and getting yourself out there and nude and classical form. only because it’s a picture of naked men, that just keep on creating. “I have always wanted to show people there is something more to my images with different aspects of who I am, about my life, my use of nudity and color. Do you know the work of fashion/celebrity about my work. And I was trying to show photographer Charlotte Rutherford who did that my work isn’t a one-note kind of thing. As I mentioned earlier, I liken your work to the the Marina in the Diamonds’ Froot album I am trying to show people that I am a very Post-Impressionist Fauvists most notably Hen- artwork? She uses color gels and pushes complex person and that I am more than the ri Matisse and his work Blue Nude. Is this an boundaries with sophisticated lighting and things that have happened to me in my past. accurate comparison you can relate to through additive color too. With the title ‘Dimensions,’ I found it was your courses in art history? I don’t but I did some research and fell the best way for me to explain everything I I can see that, the use of color during the in love with her work; she has such an inwanted to get across with my work in the one movement and specifically in conversation tense use of color that it just adds another word without it being complicated with something else. “I had never photographed with color before SVA. I had only had ever used strobes or natural light. So when I was starting to do my seminar classes and wanting to challenge myself, I bought gels and really fell in love with them. I still constantly experiment and really enjoy trying to ‘feel out’ and to see what these color [techniques] really mean to me. If I think about the color as another extension of myself and how I find myself wanting to be outgoing and sort of an extravagant kind of person. I have a big love for theatricality and like having an over-the-top sense with my work. My earlier work at Chaffey [College] was about theatricality and so I feel by incorporating the color I am adding something to my work, adding another layer because before when I was doing my self-portrait work it felt like just a portrait of myself in my room. I thought it was a very simplistic perspective of my work.” I wanted to add more to this Self-Portrait with Mike and Chuck (detail), 2017, archival inkjet print, dimensions variable portrait of an artist, so I quizzed him some more: Sean Black: Who are the artists that inspired you in art school and more recently? Eric Tenorio: One of the photographers that really inspired me in art school was Lucas Samaras. I had already shot a few images using gels and colored lights when I was introduced to his work and instantly fell in love with it. His use of color, space, and how he worked with his models was beautiful and something I hadn’t really seen before. Black and white photography is said to be a reductive process, meaning information is “reduced” by removing the elements of color hues and shades to monochromatic tonality. How would you discuss your work as “additive”? NOVEMBER 2017 • A&U
with Matisse’s use of color and the way the women are posed makes me think of my work; with my use of color and how I pose myself and the people in my pictures. What advice would you give to other young photographers thinking of pursuing art school and a career in the arts? I would tell a young photographer to just keep shooting—any idea you have, shoot it. One of the best things I did when I started doing photography is to just shoot as many ideas as I could just to see what works and what doesn’t work. What makes sense and what doesn’t make sense? And what can evolve and grow and what is just a one-time thing. It also helps you find
layer to her work and makes the color so important for the image. This is what I’m trying to do with my work, that my use of color becomes something important and doesn’t get bunched into photographs that are just using color for the sake of color. By adding gels myself I hope to give people another thing to look at and to question [in my work] and to wonder about. Really, I am still trying to figure out what the colors mean for me.” For more information about the artist and additional work log on to his website at www. erictenoriophotography.com. Sean Black is a Senior Editor of A&U.
Jai Rodriguez pushes fellow Latinx men to reject stigma and stand up for their health by Larry Buhl
ers would disclose their HIV status to me and tell me how important the show’s message was.” Since Rent, Rodriguez has starred in Bravo’s Queer Eye, where he instructed straight men on how to be cool and hip (but still straight). He’s also been in nongay roles in the CBS techno-thriller series Wisdom of the Crowd and upcoming crime thriller film Intensive Care. In fact, the only gay role he’s had since Queer Eye is his current role in Sex Tips for Straight Women From a Gay Man, a comedy where he performs with Kendra Wilkinson off-Broadway and in Las Vegas. “When I got Queer Eye, everywhere I
want people would instantly know that I was gay because we were so visible. Thank god for progressive-minded casting directors, though. Now, I can’t get cast as the sassy gay friend to save my life.”
all photos courtesy Positively Fearless
hen Jai Rodriguez was sixteen his aunt disclosed that she was losing her vision, due to AIDS-related complications. Her son, Jai’s cousin, Rico, had HIV too. It was just months before antiretrovirals came out, months before HIV/ AIDS would, for many, become a manageable disease instead of a death sentence. Rodriguez told me it was his first encounter with HIV and because it was family, the impact was deep and personal. “My aunt is the reason I’m in entertainment. She went with me on my first audition.” And though he was living a sheltered life, he was shocked at how people with HIV were treated. “When my mom and I took my aunt to the dentist, I watched her eyes well up when the dentist used three pairs of gloves with her. It was so unnecessary.” Two years later, Rodriguez, just out of high school, booked a role in the hottest Broadway show at the time, Rent, and naturally, he would be playing the role of Angel, a young street performer who eventually dies from AIDS-related complications. Or maybe the casting was not so obvious, aside from Angel and Rodriguez being of Puerto Rican descent. Though Rodriguez was a musical theater kid with two years in high school arts conservatory under his belt, the part of a gay genderqueer character was daunting. “I didn’t have any life experience to draw from,” he said. “I grew up on Long Island in a strict, religious family. No TV, no secular music, nothing in the house unless it was for the glory of God. When you go from that to a show about freedom and sexual acceptance and HIV it’s quite a change. The minute I started playing [Angel], every drag queen came out and took me under their wing and shared their stories.” Rodriguez was a quick study on the drag part, and, soon he was a de facto spokesman for HIV/AIDS, even though he was, and remains, negative. The cast of Rent would collect money for Broadway Cares after the show and because the Angel character passed away Rodriguez was usually the actor to make the speech that people need medical care and they don’t have access to it. “Audience members, random strang-
Health Tips for Latinx Men From a Latinx Man Off-screen Rodriguez has broadened his definition of family to embrace the Latinx population, especially fellow Latinx gay, bi, or straight-identifying men who have sex with men. And he has some messages for them. “First, if you are HIV positive, get into treatment. Owning your status is
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scary and paralyzing, but you have to get on a proper treatment plan and adhere to it. If you are negative, don’t say disparaging things about people with HIV. It angers me. I take that personally. It’s like you’re talking about my aunt.” The reason Rodriguez began talking directly to the Latinx community is the statistics. Unlike other groups in the U.S., which are seeing a decrease in new HIV diagnoses, the Latinx community is actually seeing an increase, according to a CDC report released this year. And Latinx men are twice as likely to report missing a dose of their medication in the last forty-eight hours. If the current rates continue, one in four gay and bisexual Latinx men will be diagPositively Fearless booth at Atlanta nosed with HIV in their lifetime, Black Pride 2017 the CDC estimates. For gay and bi white men, the rate is one in 11. In an article still being if a patient does test and it comes back prepped for publication in A&U, Guillpositive, too often that family doctor won’t ermo Chacón, President of the Latino stress the importance of adhering to the Commission on AIDS, explained that drug regimen, Rodriguez said. faith-based organizations, the educa“People can be scared to take pills in tional system and even some families front of others, or they live with parents who can lead MSM Latin men to live in isola- don’t know their status,” Rodriguez says. tion and make risky sexual choices. It’s not just family pressure and docRodriguez says he’s aware of how tors who aren’t gay friendly that is leading stigma can lead to unsafe behaviors. “I to the rise in HIV diagnoses among grew up religious and went to a mostly Latinx men. African-American church. I understand “It’s a laundry list of things in our the downlow and their fears and anxieties. community,” Rodriguez said. “Young When you ignore something it only fuels Latinx men didn’t see all the things I did the problem.” What’s surprising, he said, when I was younger, so they’re not taking is that in some communities ignorance [HIV] seriously.” and stigma around HIV rivals mid-nineBut the biggest issue is the shame, ties levels. Rodriguez added. “It’s embedded in us as When Rodriguez found out that there Latino people. It’s hard to shake.” was a rise in HIV infections for Latinx Encouraging men to shake off that men who are having sex with men, it shame is just one goal for Rodriguez’s shocked him and angered him, he said. partnership with Positively Fearless, a “Then I remembered what it was like to campaign funded by drugmaker Jannsen come out and the stigma of the word ‘gay.’ Therapeutics that helps to empower Latinx Even now I feel uncomfortable talking and Black gay and bi men and MSMs—the about my boyfriend with some family HIV statistics in the Black population are members. And if that’s me, a well-known similarly harrowing—to get tested, speak gay dude, what’s it like for someone who’s up and seek appropriate care. closeted and then finds out that he’s posiRodriguez says that Latinx MSMs tive? What are they going to do? Go to their need allies, too. And that requires some family doctor?” serious outreach. Sometimes Latinx men do go to their “We can make noise in our own comfamily doctor. And that’s where another munity but we also need to educate people point of failure can happen. A patient around us. There is so much information isn’t likely to provide a complete sexual out there that is not current and informed history to a doctor who isn’t gay friendly. and people make decisions on that and Consequently the doctor won’t suggest getting tested for HIV and other STIs. And make judgments about others based on NOVEMBER 2017 • A&U
that. I can only imagine that it is so frightening, the fear of rejection from those you love or thinking you are dirty.” The media vehicles for the messages include, Rodriguez said, “everything.” “We are big on social media. We were at Atlanta Pride. Also we’re getting the messages out there in straight-up regular media. If anyone calls and says we need an emcee for this fundraiser, I say ‘I’m there.’” Rodriguez has been surprised by the response from some who were shocked by his efforts to enlighten and educate people on the state of HIV/AIDS. “When I started posting articles with Positively Fearless people said ‘why are you doing this?’ It’s so interesting in 2017 that people in entertainment were concerned that I was aligning myself with this issue. I ask them, ‘do you think people will think I’m positive? And then I’m not going to get jobs?’ That’s so absurd and based in ignorance. “Back in the day you couldn’t come out as gay, now you can,” he added. “But when will we get to the point when familiar faces come out as positive and share their stories? That would be amazing and courageous.” For more information about Positively Fearless, log on to: www.positivelyfearless.com. Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl.
Making Spirits bright I
t’s November and the holidays quickly approach! Christmas, Hannukah, Kwaanza—no matter which holiday you celebrate, each one comes with its long-valued traditions, the most fun of which just might be gift-giving. That old adage, ’Tis better to give than to receive, certainly rings true when the gifts you give not only bring pleasure to the recipient but also help to fund medical research and/or to provide services for the HIV/AIDS community. For A&U’s 16th Annual Holiday Gift Guide, we have sought out gifts that will tantalize the taste buds (small-batch Kona coffee, chocolate brownies), complete the perfect outfit (sari scarves, designer tees, stylish jewelry), support artistry (Hmong textile bags), or simply delight the recipient for years to come (who doesn’t want Carol Burnett on their holiday tree?!). More importantly, each gift you give (or buy for yourself!) will provide much-needed funding to non-profit organizations devoted to making spirits brighter for our community every day. Your friends and your community will thank you!
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The Elizabeth Taylor AIDS Foundation
ounded by the screen legend and AIDS activist Elizabeth Taylor, The Elizabeth Taylor AIDS Foundation provides much-needed grants in the U.S. and abroad to organizations offering direct-care services, HIV education, and/or advocacy. Currently, ETAF is marshalling the resources of an international coalition to achieve UNAIDS 90-90-90 HIV treatment goals in Mulanje District, Malawi by 2020. ETAF continues to bring the marginalized to the center of attention and advocate for their rights. This year the House of Taylor has produced a brand new fragrance, Love & White Diamonds. Tell Me More: The feminine floral fragrance, inspired by Taylor’s two greatest passions, love and diamonds, is romantic, magical, and glamorous—just like Taylor herself. Who Benefits: As part of Elizabeth Taylor’s passionate commitment and fearless leadership in the fight against HIV/AIDS, she directed that a portion of her royalties from White Diamonds and her other House of Taylor fragrances benefits The Elizabeth Taylor AIDS Foundation. How Much: $69. How to Purchase: Available now at Macy’s counters nationwide and Macys.com. For more information about The Elizabeth Taylor AIDS Foundation, log on to: www.elizabethtayloraidsfoundation.org.
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Project Open Hand
o delight coffee lovers, Project Open Hand has teamed up with Carta Coffee, a six-acre small-crop farm in the Kealakekua region of Hawai’i, to offer a special coffee crafted especially for the Bay Area nonprofit: the Project Open Hand Roast. Carta Coffee owner and farmer Scott Burr says, “[POH’s] mission touched my heart. I have talked to others who have received Project Open Hand’s meals. I started thinking of ways I could do more to contribute and the idea of a roast made just for Project Open Hand seemed like a great idea.” Tell Me More: The aroma of this small-batch, 100% Kona coffee is rich and smoky with a natural sweetness, hints of cinnamon and caramel, and hints of citrus; it is very smooth with some earthiness. How Much: Each 6-oz package costs $25.00. Project Open Hand will receive fifteen percent of all sales from this limited-time POH roast. Who Benefits: POH offers to its clients grocery store and meal deliveries, and countless nutrition programs for the HIV/ AIDS community, house-bound seniors, and others in the San Francisco Bay Area (San Francisco and Alameda Counties). Every day, POH prepares 2,500 nutritious meals and provides 200 bags of healthy groceries to help sustain their clients as they battle serious illnesses (primarily HIV/AIDS), isolation, or the health challenges of aging. How to Purchase: Visit: www. cartacoffee.com/collections/shop/products/project-open-hand-roast; for more information about the coffee, go to: https://www.openhand.org/blog/ farm-cup. For more information on the life-saving work done by POH, check out: www.openhand.org.
Until There’s A Cure
ounded in 1993, the national nonprofit Until There’s A Cure (UTAC) continues its steadfast mission to eradicate HIV/AIDS by raising awareness and funds and promoting compassion and love as ways to energize the fight. UTAC funds innovative programs which promote AIDS awareness and prevention education; provides financial support for care and services for those living with AIDS; and supports and advocates for AIDS vaccine development. You might be familiar with The Bracelet, UTAC signature piece designed by Isabella Geddes of Florence, Italy in 1993. However, UTAC’s online store offers much more, many bracelets of different styles and materials, and all are priced from $5 to $150, as well as other jewelry and clothing. Here are a few of the new items available from UTAC’s online store. Who’s Sari Now Scarves: These chic and simple scarves, available in over two dozen colors and patterns, are made with up-cycled sari fabric by the women of Apne Aap, women who have been rescued from sex trafficking in India. Tell Me More: Length: 70 inches; width: 17.5 inches. How Much: $30.00. • Simply Red: Minimalist and magnificent, these leather-and-sterling bracelets make a bold fashion statement. An engraved small ribbon on the tip is the perfect reminder that our work fighting AIDS is not done yet. Tell Me More: Made in Italy. How Much: $30.00. • How I Value (HIV) Life Pins benefit UTAC’s sister site www.hivlife. org, which was created by interns at UTAC. Here is their mission statement: “How I Value (HIV) Life is frustrated with the current state of HIV/AIDS today. We want to see a change, but we need help…. to empower and educate people on the issues surrounding HIV/ AIDS globally. We believe that one person can make a difference.” Tell Me More: Comes in two styles, “Community” and “Partners.” How Much: $5.00. Who Benefits: Over eighty-eight percent of the proceeds from every sale is funneled into the group’s work. How to Order: Visit: https://store.until.org. For more information about Until There’s A Cure, log on to www.until.org.
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God’s Love We Deliver
od’s Love We Deliver, the New York metropolitan area’s leading provider of life-sustaining meals and nutrition counseling for people living with severe illnesses, provides services throughout all five boroughs of New York City, Westchester and Nassau Counties, and Hudson County, New Jersey. Since 1985, God’s Love has cooked and delivered over 20,000,000 meals—all nutritious, individually tailored, and free of charge. The nonsectarian nonprofit also provides unlimited nutrition counseling. Since its start, God’s Love We Deliver has never had a waiting list. Providing all of that food and all of those services takes a lot of dedicated volunteers and an awful lot of money. You can help defray GLWD’s costs and give your tummy a rare holiday treat when you order Chuck’s Famous Brownies, created specifically for God’s Love We Deliver. Tell Me More: Chuck’s Famous Brownies contain no preservatives and come in boxes of 4, 8, 12, or 24. How Much: $19–$75. All proceeds from the brownies benefit God’s Love We Deliver. Another way to share the spirit of the season with your loved ones, friends and business associates is by sending exclusive, personalized Holiday Tribute Cards. Tell Me More: GLWD will personalize, address, stamp and mail your cards. Inside message reads, “This holiday season, [Your Name] has made a generous donation in your honor to GOD’S LOVE WE DELIVER.” There are seven different card designs to choose from: Peace: A beautiful peace symbol courtesy of John Varvatos. • Love Rocks NYC!: In March 2017, 2,800 people filled every seat in New York City’s historic Beacon Theatre for the first-ever God’s Love We Deliver rock concert (coming again, March 15, 2018). • Stirring the Pot: Art Glazer pays tribute to the dedicated volunteers that help GLWD fulfill its mission. • Turkey: Roy Lichtenstein’s iconic painting was featured in a 1964 MoMA exhibition, “American Supermarket.” • Holiday Wreath: William Ivey Long, the Tony Award-winning Broadway costume designer, contributed the artwork. • Red Truck: Flowers, trees, and a load of love in a cool, red ‘54 Chevy rolling on white-walled tires. Fun! Courtesy of Redscout. • 2nd Avenue Deli: Matt Weber’s photo of Abe Lebewohl’s original delicatessen on East 10th Street in Manhattan. How Much: $15 per card. Who Benefits: All proceeds help God’s Love We Deliver sustain and expand its gold-standard services. How to Order: For more information about the nonprofit and to see the wide assortment of gifts offered, log on to: www.glwd.org.
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Broadway Cares/Equity Fights AIDS
hough known for her hilarious variety show on television, its clips replayed endlessly on YouTube, Carol Burnett first wowed audiences on Broadway, playing Princess Winnifred in the 1959 musical Once Upon a Mattress. Now she joins Liza Minelli, Barbra Streisand, Julie Andrews, Gwen Verdon, Patti Lupone as part of Broadway Cares/Equity Fights AIDS’ annual Broadway Legends series of ornaments. Dressed in her colorful royal princess outfit from the musical, Ms. Burnett is the tenth legendary star in this marvelous constellation. Tell Me More: Each of these finely detailed glass ornaments was designed exclusively for BC/EFA by Glen Hanson with the Christopher Radko Company. Six-inches tall. How Much: $65. How to Order: Log on to: http://broadwaycares.stores.yahoo.net/. Check out the other unique holiday items available from the Broadway Cares Online Store, including other Broadway Legends ornaments, a selection of holiday greeting cards, holiday gift wrap, holiday music CDs, and many other unique gifts for giving, all of which benefits BC/EFA. Who Benefits: Ever since 1988, BC/ EFA has been the major supporter of essential social service programs at The Actors Fund, including the HIV/AIDS Initiative, the Phyllis Newman Women’s Health Initiative, and the Al Hirschfeld Free Health Clinic. BC/ EFA has also awarded annual grants to more than 450 AIDS and family service organizations nationwide over the years. The nonprofit has raised more than $285 million for essential services for people with HIV/AIDS and other critical illnesses in all fifty states, Puerto Rico, and Washington D.C. For more information, log on to: www.broadwaycares.org.
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Designers Against AIDS
perennial favorite in our annual Holiday Gift Guide, Designers Against AIDS (DAA) is a non-profit organization launched by “Beauty Without Irony” in 2004 in order to raise AIDS awareness in the international media and in the general public. Born in Belgium but active all over the world, DAA reaches out to young people to raise awareness and to get the subject of HIV/AIDS back into the media all over the world. Their empowering messages—“Prevention is the only cure for HIV/AIDS” (protect yourself and your partner) and “Know your status” (Get tested)—address the lack of urgency about AIDS that the group has discerned in recent years. DAA also fights for the acceptance of and equal rights for HIV-positive people. In October 2013 DAA opened its online store where you can find the iconic DAA T-shirts, selected items from their “Fashion against AIDS” collections, and new and vintage designer items from brands such as Prada, Balenciaga, Hermès, Rick Owens, Marni and more. Who Benefits: The greatest thing about the DAA store is that the organization donates 100 percent of all sales proceeds to charity because all items in their online store have been donated by supporters of DAA’s work. Here are some of our favorite items: Hmong Textiles Bags Hmong fabrics are meticulously hand embroidered and often feature hemp batik and/or block prints and patchworks, made with lots of love and attention to detail. Tell Me More: The DAA Hmong Collection consists of unique handmade shoulder bags, coin purses, and skirts made out of vintage fabrics sourced from Hmong tribes. The fabrics are combined with new red velvet, suede and soft denim by a young Antwerp designer to create a contemporary style. Each item has an DAA label inside. Ninette Murk, the Founder and Executive and Creative Director for DAA, says, “I collect vintage (fifty-year-old and more!) Hmong tribe fabrics from Asia—China, Thailand, Vietnam, Laos—and have a seamstress here who sews them into modern accessories. We use the proceeds for our project ‘Asia against AIDS-Back To Zero’, so the circle is round again.” Hmong Textiles Embroidered Large Shoulder Bag: A spacious one-of-a-kind shoulder bag that features all-over hand embroidery and beautiful patchwork. Lined with red velvet. The bag has velvety black cotton at the sides. Metal press stud closure. Tell Me More: Measures 45 by 45 cm with 105 cm by 18 cm shoulder strap. How Much: 249 Euro. Hmong Textiles Customized Shoulder Bag: This rectangular shoulder bag has a flap decorated with suede fringes. Metal press stud closure. Lined with red velvet. Tell Me More: Measures 35 by 35 cm with 130 cm by 8 cm shoulder strap. How Much: 149 Euro. Small Striped Vintage Hmong Textile Purse: This small purse with red suede fringes is perfect for make-up, coins and/or condoms! Tell Me More: Measures 16 by 11 cm. Zipper closure. Lined with red velvet. How Much: 20 Euro. How to Order: Go check out the new DAA store for clothes, accessories and more for men and and of course their iconic Robert Smith (The Cure) long-sleeved black T-shirts. Shop for all these items here: http://designersagainstaids.tictail.com/. You can also check them out at their Facebook page: https://www.facebook.com/designersforcharity/. For more information about Designers Against AIDS, log on to: www.designersagainstaids.com.
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Finding Strength International LGBTQ and HIV/AIDS activist Carlos Idibouo shares his life’s journey & calls for increased access to treatment and prevention Text & Photos by Alina Oswald
would never call myself an activist. People call me an activist,” Carlos Idibouo tells me, sitting across from me in my studio. He is in town from Canada, and stopped by to tell me his story and plans for the future. Idibouo is recognized internationally for his LGBTQ and HIV activism work. An Ivory Coast native now living in Canada, he is on the board of several national and international organizations, including the Gay and Lesbian International Sports Association, GLISA, where he represents Africa. He was a member of the LGBT Francophonie Conference Scientific Committee, part of this year’s Canada Pride
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Montreal. As I write this, he is in Indianapolis, attending InterPride, the 2017 World Conference, where he was selected by InterPride board of directors to represent Africa Region 16. Idibouo travels the world to spread the word about equality—LGBTQ as well as women’s equality—and also HIV/AIDS prevention and education. He does it while speaking fluently in English, French or Spanish. He does it by speaking in the universal language of activism. Quite recently he attended this year’s IAS Conference of HIV Science in Paris, France. Not only that, but he was one of the thirty people selected by IAS to help write the Paris Community Dec-
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laration, an affirmation of the Denver Principles across all key affected populations, living with or affected by HIV/AIDS, in relation to PrEP and Treatment as Prevention. Carlos Idibouo became involved in HIV activism at the age of eighteen, when he was still living in Ivory Coast. He volunteered for Red Ribbon, Ruban Rouge in French, the first Ivory Coast HIV organization, cofounded by Cyriaque Yapo Ako in 1994. Ako is an internationally recognized activist who, in 2006, as executive director of the Reseau Ivoirien des Organisations de PVVIH in Cote d’Ivoire, met with President Bush in D.C., for that year’s White House World AIDS Day. In 2003, Carlos Idibouo and Cyriaque Yapo Ako started the first LGBTQ organization in Ivory Coast. Rainbow Plus—Arc-en-Ciel Plus Cote d’Ivoire-—served the LGBTQ community and members of the community living with HIV or AIDS. At the beginning of 2006, Idibouo attended a workshop, where he ended up being interviewed, as a participant, by the media. Then the article came out. “Cyriaque called to tell me that my picture was [on the front page] of the newspaper,” Idibouo recalls, explaining that he was completely unaware of the article that had been written about him or the picture plastered over the front page of the newspaper. “I hung up with Cyriaque and a few minutes later, my sister called. She knew that I was gay but she didn’t expect to see it in the newspaper. She started crying. She asked me what I was thinking. [She] was asking me questions I [couldn’t] really answer. I hadn’t seen the newspaper yet.” At the time Idibouo was on his way back home to Abidjan (in Ivory Coast), returning from yet another workshop. He was waiting for a cab in a busy bus station—a crowded place where people wait in line to get a cab, much like at the airport here, in the States. While he was waiting, a woman came to him, staring closely at his face then starting screaming “It’s him! It’s him!” he recalls. A cab driver noticed the commotion and advised him to get into the first available cab and leave. Only once he was in the cab, on his way home, he realized what had just happened, and that the woman must have recognized him from the newspaper, and that his life was in danger in Ivory Coast. When he finally grabbed a copy of that newspaper, he noticed his picture on the front page. The caption read, he mentions: “Carlos Idibouo, President of Gays, Lesbians, and Bisexuals.” He knew that, as a gay man, he wasn’t safe in other African countries. That said, NOVEMBER 2017 • A&U
Ivory Coast was (is) considered a progressive country in Western Africa. But the country’s penal code calls homosexuality an immoral act. Hence, if gay people are found having sex, they are thrown in jail. That’s what happened to two guys, he points out. They were sentenced to eighteen months in jail for having sex. The penal code doesn’t clearly define homosexuality as a crime, but if caught having sex with another person of the same sex, an individual is taken to court where the judge rules based on his or her personal beliefs. “It’s a very subjective decision,” Idibouo emphasizes. Meanwhile, he received a scholarship to participate in the 2006 International AIDS Conference in Toronto, Canada. He had never traveled to North America before and had no idea what to expect. Yet, there he was, in Toronto, attending the conference. A man recognized him from one of the videos playing on screens, on the walls, and the two started chatting. At one point, the man asked if he wanted to stay in Canada. “I just freaked out when he asked me that question,” Idibouo recalls. “[I told him] I didn’t know anybody [in Canada], and he said ‘but you know me now.’” (Over the years, the two became best of buddies.) They decided to pick up the conversation the following day. After a sleepless night, he realized that he wanted, after all, to stay in Canada. His new friend put him in touch with a lawyer who, in turn, helped him apply for his refugee status. While the immigration process in Canada is different from that in the U.S., going through the immigration process, as a legal immigrant or as a refugee, is often an endless, frustrating, depressing, anxiety-causing experience. It involves filling out mountains of paperwork, fingerprinting, waiting for hours to talk to officials, schedule interviews and going through interviews—and that if people are lucky enough to actually get an interview. But for those going through this process it’s all worth it. Coming from a poor country to a country that, until then, one could only dream of, can be an overwhelming, as well as mind-boggling, experience. “It’s not something that you plan,” he comments. “I don’t think anybody plans on going through this kind of experience. I came to Canada not having a clue what was going to happen to me in terms of claiming a legal status. I found that out when I was already in Canada. And I had to go through the process, because I had made the decision to stay.” This is not
something that one can change their mind about halfway into the journey, he further explains, because by then the return ticket is not valid anymore and people don’t have money to buy another ticket. So, they have to stay and go through the entire process. Thing is, while waiting to receive any news from the immigration office, people find themselves living for years in an ongoing state of uncertainty, unsure of what is to happen to them. Yes, upon applying for legal status they receive a work permit and social security number to go with that work permit, but that only allows them to work, to find a job and earn a living. Pay taxes, too. But they still lack that piece of paper that proves that they’re legal refugees or permanent residents. It usually takes years to get through it, from applying for legal status to becoming a citizen. (It took Idibouo two years and three months to receive his refugee status. Only then, he could apply for permanent residency. Three years after becoming a permanent resident, he could apply for citizenship.) Years of living in this state of uncertainty can lead to depression and anxiety. Some evidence points to an environment of exploitation that endangers the health of migrants. While there’s little information regarding causes of post-migration HIV infections among migrants in the U.S., studies have shown that, oftentimes, socio-economic conditions put migrants in Europe or North America at higher risk of acquiring HIV. That is, because of socio-economic conditions many migrants end up in relationships that, in turn, put them at high risk for HIV (and other STI) infections. Migrants to several of the European Union and European Economic Area seroconverted after moving to those countries; as reported in a recent Avert article, sixty-three percent of the HIV-positive migrants to European Union and European Economic Area seroconverted after they had relocated to their new countries. Idibouo is very much aware of these statistics (or lack thereof in certain cases) and offers his personal story as a way of giving voice to a much needed, yet often avoided conversation. Idibouo’s story helps to right the wrong assumption that many immigrants bring HIV with them to their new countries. Not only that, but it also adds to the already complex HIV story, while touching on lesser-known facets of HIV seroconversion. “There are rich men, in a position of power, talking about speeding up your immigration process, [and so] at the end of the day you want to believe them,” Idibouo
shares, commenting on migrants who end up in relationships that could place them at risk for HIV. “And you find yourself in a very vulnerable situation where you can’t say no. You don’t have the right words to convince the other person that you don’t want to engage in any kind of sexual intercourse with him.” He pauses, as if trying to find the best way to explain it. “You see, [for migrants] coming to North America, to the rich people country, is part of a dream process. You come here and the first person that you meet on your path is one who tells you that he’s going to marry you and that you won’t have to worry about anything—legal status, money, work. For someone who comes from a very poor country and hears all these things, it’s like [finding] paradise. You don’t measure the notion of risk. You’re aware of it, but it’s the last thing on your mind, because the most important thing for you is your [immigration] status.” So, even if they are aware of, say, HIV, new immigrants or refugees tell themselves that they’re in a country where HIV is not a death sentence anymore, and that there are medications available to them. They tell themselves that if HIV does happen to them, they’ll deal with it later, once they get their immigration status in order. And so, they go with that person who seems to offer their dreams on a silver platter. They do what that person says, while throwing safety out the proverbial window. “You can’t say no,” Idibouo reiterates, “because you have just met someone who would be able to save your life and you’re afraid that you’re going to lose that person. And so, you’re trapped. It’s only later on, when you get your legal status, that you realize that you could have avoided [risking exposing yourself to HIV]. But by then it’s often too late.” He ended up in a complicated relationship. On one hand, because of that very relationship he didn’t have to worry about food or money, and lived in a beautiful place in Toronto. On the other hand, nothing in that beautiful place belonged to him. Every single glass, plate or book had a story and a history he was not a part of. The rules of engagement in the relationship itself were vaguely defined, too. After a while, Idibouo moved to Montreal for studies. The relationship continued, with Idibouo commuting between Montreal and Toronto. “In December 2011, I organized an HIV forum in partnership with Clinique l’Actuel in Montreal,” he recalls. People could come to the forum and, if they NOVEMBER 2017 • A&U
wanted, they could get tested for HIV. And as an activist, he volunteered to get tested for HIV, so that others would follow his example. He wasn’t worried about the results, because he was getting tested regularly and the results would always come back negative. This time around was no different. And yet, he left the clinic with the feeling that something was not right. In April of 2012, while still in Montreal and right before leaving for Toronto, he decided to get tested for all STIs. The doctor told him that he could include an HIV test for free. So he got tested for HIV yet again. As days went by, the clinic would call him in Toronto to let him know about his many test results-—that he had tested negative for one STI or another. And then one day, the clinic called again. He got transferred to the doctor, who, in turn, told him that he had to speak with him in person. Idibouo insisted that, if the call was about his HIV test result, he needed to know. He mentioned that he’d been working in the HIV field for many years and was prepared for whatever the doctor had to say to him. And he basically talked the doctor into giving him the HIV test result over the phone. It was positive. He asked to have his file transferred to his doctor in Toronto. Idibouo comments that, while nobody wishes HIV, or any other disease, on anybody, he’s glad that it happened in a time and day when medications are available. “I didn’t lose my hair; I’m just shaving because I want to,” he laughs. “I didn’t lose weight, didn’t have to go through side effects related to AZT….” He then confesses, “I was ashamed, knowing that I have been working in the field for so many years, and found myself being HIV-positive. I was ashamed, but not for long, because I was waiting to see how people around me reacted to the news, and they didn’t blame me.” Yet, the complicated relationship he was in ended several months later, in December 2012. Then he offers, “I’ve never told my folks back home.” When I ask what’s going to happen when his family will see this article, he calmly answers, “I’m fine with that. I have a different approach to talk about things now.” Now, Carlos Idibouo is at work founding a new nonprofit. The House of Culture for Human Diversity represents the outcome of all his work as an activist, throughout the decades. “I want to set up a platform where people will be able to self-identify themselves, without worries,” he explains. The House of Culture for
Human Diversity will celebrate the diversity of human beings and human rights, be those women’s rights or LGBTQ rights. The new nonprofit will focus on HIV awareness and education, in particular on eliminating stigma and using culture and art to address stigma and related issues. Now, he’s very much involved in the U=U campaign. “I love it,” he says, because “the science is able to prove [that undetectable really means untransmittable].” But, he points out, not everybody can afford to become undetectable because of poverty, lack of access to care, and other factors. Aside from U=U campaign, Idibouo is also a PrEP advocate. Recently, Ontario decided to subsidize the cost of PrEP, making it much more affordable. But, he mentions, some people, in particular those new to the country, still cannot afford PrEP. And so, despite all the progress, availability does not mean affordability. “I’ve never been afraid of HIV,” Idibouo says. “When I was very young [as an HIV activist], I’ve seen so many people dying, some dying in my arms. Even when I cofounded Rainbow Plus, there were [still] people from the LGBT community who were dying [from the virus]. So, I’ve never been afraid of HIV. I’m afraid of human beings, because human beings give social power to HIV—that is, the discrimination that comes with it, the stigma and rejection, and people who could survive but let themselves die because of that social power that humans give to HIV.” But that can be reversed. People can take the power away from HIV. They can educate themselves about HIV and make “getting to zero” new infections happen. He mentions the importance of looking ahead and embracing new prevention strategies such as the 90-90-90 treatment target to end AIDS. Its goal is that, by 2020, 90 percent of the people to know their HIV status; of those HIV-positive, 90 percent to be in treatment; of those in treatment, 90 percent to be undetectable. “Every single person, especially if they’re sexually active, needs to be involved and part of this campaign,” Carlos Idibouo emphasizes. Every person needs to take the power away from HIV. “I took power over HIV. After all, being able to recognize your weaknesses is a strength.” Learn more about Carlos Idibouo and the House of Culture for Human Diversity by visiting: http://bit.ly/2kN4FsT. Alina Oswald is Arts Editor of A&U. She interviewed advocate Omar Garcia for the October issue.
U N CEN YouTube Sensation Davey Wavey’s Mission Is to Protect His Gay Brethren, Enable Others To Experience Joyful Sex & Celebrate One’s Own Body
by Dann Dulin
so. His critics are plentiful, condemning him as a gay cookie cutter and a shallow sensationalist. He defies being pigeonholed as his shows are varied and his natural approach is refreshing. One episode finds him stripping down to snuggy briefs in New York City in the cold for passersby to write “what you fear” on his body. Earlier this year he interviewed a ninety-five year old grandfather who had just recently come out of the closet. Both videos are a must-see! Unabashedly and brazenly outspoken, Davey is entertaining and, often, educational. No subject is taboo. Some of his past shows include “Prostate Secrets,” “How To Fuck a Transgender Person,” “Anal Douching,” and “My HIV Results LIVE!” He admits to being a bit perverse, goofy, and a
sexual deviant. But then, who isn’t? Cocksure and raw, he makes no excuses. In person or on video, Davey Wavey is authentic. The man takes YouTubing in new directions. His videos are inspirational, emotional, and empowering. He has two YouTube channels: WickydKewl and DaveyWaveyRaw. Watching his vids is like munching on a rich piece of dark chocolate cake, with hot fudge on top. Davey has twice participated in the AIDS/ LifeCycle, an annual seven-day trek where participants bike from San Francisco to Los Angeles to raise money for AIDS organizations. (This year nearly 3,000 riders raised over $15 million.) On one of the rides Davey biked alongside a Texas father who lost his son to AIDS-related causes. Wavey filmed
photo courtesy Davey Wavey
hat started off a decade ago for Internet icon Davey Wavey as a personal video diary for his close friends has exploded into 400 million hits and nearly 1,000 episodes. His strapping Abercrombie & Fitch looks don’t hurt him either. (Davey is a personal trainer, zealous about exercise.) Davey Wavey (a nickname his parents called him as a kid; he will not reveal his last name) had just moved from Washington, D.C. to Toronto when the idea struck him to chronicle his adventures in a new city. His eighth video put him on the Internet map. In it, a shirtless Davey talked about watching his neighbor masturbate. “I’m just a silly irreverent gay guy…,” the thirty-three year old flippantly says. Maybe
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photo by A.J. Ford
N S O RED their journey. The episode is called “Dad Bikes 545 Miles For Gay Son.” In another episode on the AIDS/LifeCycle journey, Davey was joined by Luke who was a recovering crystal meth addict and had been sober for only twelve days. The episode is called “12 Days Sober.” “I was honored to do these powerful stories,” recounts Davey from his home in Woonsocket, Rhode Island, where he was raised. He lived in West Hollywood for a year and a half, but in January 2016 decided to be closer to his parents, his older sister, and his goddaughter. Davey has owned his spacious one-bedroom loft for ten years. Despite its location just off Main Street, I feel as though I’m in a cabin in the woods. It sports a brick wall, shiny wood floors, and a high wood-beam ceiling. NOVEMB3R 2017 • A&U
Off in the corner is a familiar desk, computer, and a large calendar with playful oversized numbers on the white wall. This has been the backdrop for a number of his shows. STIs have been the subject of many of his episodes. “I filmed one episode where I talked to my real life doctor about frequently asked gay health questions,” relates Davey in his trademark boyish voice. “I also did an episode about my experience telling my sexual partners that I had an STD.” His doctor recommended that he reach out to his partners. Though apprehensive, he did it. The responses were surprising. “Although I feared people might respond negatively, they all appreciated my honesty.” He rises up off the L-shaped black leather sofa to fetch more iced tea and asks if I would like a refill.
As he searches into the snazzy stainless steel refrigerator he comments, “As a gay man, HIV and AIDS is a defining touchstone for all of us. Though I am too young to remember the AIDS epidemic of the eighties and nineties, I understand how it shaped this community, and how we’ve come together and grown stronger.” He stops, leans on the counter, and continues. “Personally, it impacts the decisions that I make about my own health, like going on PrEP. I understand the importance of prioritizing my sexual health and being educated on the issues that affect me.” In his episodes, Davey has encouraged others to get on the prevention drug, especially if they are in a high-risk group. Wavey has interviewed many people living with HIV and those who have lost
a monthly gay bingo fundraiser, at which Davey has appeared. Davey has done Internet PSAs for the epidemic, including HIV Beats Campaign for Abzyme Research Foundation, and just recently he’s been elected as a 2017 digital ambassador for the CDC’s Doing It Campaign, which premiered in June. When he tells me this, his searching sapphire-blue eyes twinkle neon and his
passion detonates with enthusiasm. It pleases Davey to please. Several years ago he attended one of Europe’s largest AIDS fundraisers, LifeBall, held in Vienna, Austria. Davey Wavey strutted down the runway at one event modeling a Jean-Paul Gaultier outfit. He even walked the LifeBall red carpet in Speedos! Known to feel more comfortable naked, today Davey has worn an ebony T-shirt and A&U • NOVEMBER 2017
photo cby Doug Breault
partners, friends, and family to the disease. Last year he taped an episode about an individual in recovery from substance use who tested positive and an individual who used PEP (post-exposure prophylaxis). This year Davey attended the United States Conference on AIDS in Washington, D.C., and gave a presentation about harnessing the power of social media. At home he supports AIDS Care Ocean State that sponsors
coffee-and-cream colored shorts. Pausing, he shifts positions, draping his arm across the sofa. “Now, as someone who talks a lot about sex and reaches a large audience of people who continue to be disproportionally affected by HIV and AIDS,” he says, “I have a duty to educate and support our community.” But why does he continue his good will work? Why does he care? He instantly answers with firm conviction, opening his arms and shrugging his shoulders, “When there’s a need in your community, you step up. That’s what you do.” Davey felt the need to help other YouTubers and in 2016 established a scholarship fund, Rising Rainbows with Broadband TV, which gives financial support and boosts exposure to underrepresented voices on YouTube. So far, they have awarded four scholarships. Davey earned his YouTube fame. He’s received many comments insinuating that he’s a trust fund baby. Untrue. He has turned Davey Wavey into a brand, working sometimes fifty to sixty-hour weeks. “A lot of people don’t realize the blood, sweat, and tears that got me where I am today,” insists Davey spiritedly, satisfying an itch on his face of flawless peachy-pink skin. “Admittedly, some of it was luck. I love what I do and I feel that I’m contributing something positive to the world.” He has one full-time employee who handles brand development. On his downtime, Davey paints, reads books, and is obsessed with House of Cards. Davey Wavey had a loving upbringing anchored in values and morals. (For outside sources of guidance he credits Oprah, Deepak Chopra, and Wayne Dyer.) When he came out to his parents at seventeen his mother immediately mentioned AIDS. “As someone who lived through the crisis, she equated being gay with AIDS and death,” he specifies. Upon hearing this news, his parents sent him to their Catholic priest. In time, they got used to it, he says, and now they are PFLAG members. He smiles, exhibiting his heftysize ultra whitey-white teeth.
In 2006, he graduated from Seton Hall, a Catholic University in New Jersey, with a degree in marketing. As a student, he did advocacy work to support other LGBT students and at one point even sued the university. He initially wanted to join a marketing agency, but couldn’t imagine himself in the corporate world. LGBT issues were his passion and so after college he started
a different aspect of pleasure each day for thirty days,” he explains, looking out the forest green double hung metal windows that open up onto a high-rise across the street. “We worked with a number of tantric coaches on the project, and produced accompanying video content with director Travis Matthews. It’s an area where we’ve seen lots of traction. There’s definitely a need for it.” Naturally, I had to ask: How old were you when you first had sex? “You know, losing my virginity was so utterly unremarkable that I don’t really remember,” he notes matter-of-factly. “I think I was around sixteen. I think it was with some guy that I met online, who smelled like cigarettes. Clearly he didn’t leave much of an impression on me.” At sixteen, he was tested for the first time. “I went with my friend’s mom to the clinic. She had lost a lot of friends in the eighties and nineties, and felt that it was her responsibility to educate me,” he points out. “I’m really grateful to her.” Now he is tested regularly and he advocates testing on his shows. Though single, he dates less frequently due to a hectic work schedule. He doesn’t go to bars so most of his connections are made online. “Finding out about the other guy’s status is easier online than face-to-face,” he admits then adds, “I’m mindful to avoid stigmatizing language and questions ‘Are you clean?’ That’s “I have a duty to educate and support like, not helpful to any of us.” our community...” Over the past ten years his goal has changed. “I’ve grown and evolved,” he says. working for Family Equality Council, a non“However, I’ve always created content about profit that advocates for LGBT families. the things that I find interesting. My focus Wavey speaks at colleges, has an unnow is to lift sex out of the darkness and derwear line called DirtyFit Apparel, and is help gay men shed shame and guilt.” a global traveler, and, of course, tapes his Sharp—and certainly fascinating—Davexploits along the way. Some of the places ey Wavey continues to push the limits. Not he’s visited are Spain, the U.K., Thailand, only does he slap a grin on our puss with and Africa. Upcoming travels include Costa his whacky antics, but at the same time he Rica, Argentina, and France. Currently, his keeps us tuned in: aware, connected, and focus is a series of tantric projects, having well informed. recently launched a program called 30 Days of Pleasure. “It’s an invitation to experience Dann Dulin is a Senior Editor of A&U.
photo courtesy Davey Wavey
“When there’s a need in your community, you step up. That’s what you do.”
NOVEMB3R 2017 • A&U
a first-of-its-kind report reveals hivby Chael Needle related needs in underserved nonmetropolitan louisiana
e can’t end the HIV/AIDS crisis without ending it in the rural South.” That simple claim greets visitors to the HEROES LA website. Common sense would tell you that what the HIV-focused nonprofit in rural Louisiana states is true. But HEROES LA sought hard evidence as well. While evidence shows that Louisiana ranks first in the U.S. in new HIV infections, and fifteen percent of those are living in rural areas, how exactly do risk factors and access to resources shape the lives of individuals in areas outside of the major cities? A groundbreaking new report presents some answers, not only for Louisiana but the Deep South, as well. “HIV/AIDS in Metropolitan vs. Rural Louisiana: One State, Two Epidemics,” produced by HEROES LA, “compares risk factors for new infections, morbidity, late diagnosis, and other issues influencing the HIV/AIDS epidemic in the Louisiana population residing outside of major cities as a first step toward finding rural-appropriate solutions for Louisiana and deep South HIV patients.” A retrospective analysis of 2013–2016 data from the Louisiana Department of Health, among other sources, the report compares risk factors for HIV across state-designated regions: stigma, racial disparity, education, poverty, incarceration, and sexually transmitted disease (STD) rates. The report focused on Region 8, home to HEROES LA, as representative of the state’s predominantly nonmetropolitan, rural area; Regions 1 and 2, home to major cities like New Orleans and Baton Rouge, respectively, represented urban areas. While some risk factors were nearly similar, difference came to light. For example, Region 8 was found to have fewer HIV-related resources than Regions 1 and/ or 2. Region 1 has eighteen testing sites while Region 8 has eleven (one choice for HIV testing within a 640-square mile area). Region 1 has eleven PrEP service sites; Region 8 has only one (within a nearly 7,044 square-mile area). Younger individuals ages thirteen to twenty-four are far more likely to test positive for HIV in rural areas. The disparities between metropolitan and rural areas became strikingly apparent once the contexts were appreciated. Notes
Monica Johnson, founder and executive director of HEROES, and one of the primary authors of the study along with Linda Meredith, HEROES’ Research and Development Director: “First of all, Region 8 is probably twice the size of Region 1. Yet we have only one health unit in each [Region 8] parish; if you see the size of it you realize it’s a lot of area that you have to cover.” Individuals may become trapped by far distances and the intimacy of small communtiies. First, travel time in rural areas becomes a barrier to care, and the report strikingly shows that frequency of use when it comes to resources available is low compared to urban areas. Second, even if you live near a testing or treatment site, concerns about being stigmatized by providers and others may prevent or slow down individuals in need of services. Johnson states that, in a major city like Baton Rouge, someone could seek care at any number of service providers if they decided to go outside of their neighborhood for fear they might run into someone they know. Not really possible in rural areas, where you more than likely will know someone at the nearest accessible testing site. The lack of anonymity creates fear among individuals who may, in the end, defer testing or, if positive, resist seeking out treatment and support groups. Though the report could not be conclusive about cause and effect, the combination of risk factors arguably has a greater negative effect on rural individuals than urban-dwelling ones. Fewer individuals living with HIV/AIDS in Region 8 are engaged in care, retained in care, and virally suppressed than in Regions 1 and 2. Among those who test late, individuals who are positive in Region 8 progress (or have already progressed) to an AIDS diagnosis at a higher rate than those in the urban regions. These risk factors are “combining into a perfect storm in the rural areas,” says Johnson, who has dedicated the past thirty plus years to HIV advocacy and is living with HIV herself. The size of the population of a city may mean little compared to the potency of the risk factors in the country. Thus, a rural area like Region 8 suffers when it comes to Ryan White disbursement, she notes. Region 8 does not have a large popu-
lation to attract the same amount of funds as Regions 1 and 2, and so the dollars are stretched across a large area, devastated by HIV/AIDS. HEROES LA hopes the report will encourage others to find more finely tailored strategies and solutions for rural areas across the Deep South, as it is doing. Importantly, says Johnson, rural areas need a place at the table. Rural organizations and individuals who need their services should have a say about what works best for them. It is especially important, shares Johnson, because more customized approaches will produce better results—and better health outcomes. In her own area, Johnson advocates for the strengthening of linkages to care, for example, making sure that if an individual tests positive he or she can be immediately linked to care. If someone tests outside of a community-based organization (CBO), they are referred to a CBO but they have to navigate the system by themselves. Linkage to treatment would happen more efficiently at CBOs with access to rapid HIV testing, too. Mobile testing, says Johnson, may alleviate the pressures of stigma and shaming that keep individuals from staying on top of their health. Funding is much needed in rural areas. Former Governor Jindal cut prevention education funds. Other funding earmaked for the South has ended. HEROES LA used to hold its support groups at the local hospital—a safer, anonymous space—but Jindal privatized the charity hospitals and the new owners kicked them out. Now, Johnson tries to stay in touch with clients by phone to make sure they are taking their meds or not feeling too isolated. HEROES itself has been running on donations alone for more than a handful of years. In closing, Johnson shares, “I was talking to a person at USCA who was saying you are trying to do stuff too fast and we’ve got to work together. I said, ‘I’ve been here for thirty years trying to do this. And I see, where I live, not a lot has changed. I don’t have another thirty years!” For more information about the report and the work of HEROES LA, log on to: www.heroesla.org. Chael Needle is Managing Editor of A&U. A&U • NOVEMBER 2017
Finding New Solutions
John francis leonard have a frank talk with your physician
hen antiretroviral therapy (ART) was introduced to patients across the board in 1996, it was revolutionary. It became apparent that those of us with HIV/AIDS could potentially live long and productive life spans. Lives were saved from near death and extended in so many more. While we are all thankful for these life-saving medications, what we’ve had to come to terms with is a host of continuing side effects and ancillary health conditions—it often being unclear whether those are caused by HIV still lying dormant in our bodies, or those medications that have caused its retreat. According to the U.S. Centers for Disease Control and Prevention, more than seventy percent of us living with HIV will be fifty or older by 2020—a miracle, yes, particularly for longterm survivors, but one that will send even more of us to our physicians for complications from treatment or the virus itself. One problem familiar to many of us is chronic diarrhea. Dr. Maurizio Bonacini, Associate Professor of Clinical Medicine at U.C. San Francisco notes, “Diarrhea is a significant problem in many HIV patients, and unfortunately, they think there is nothing they can do about it.” Many physicians themselves compound the situation with a similar attitude about it. Dr. Bonacini also points out the reluctance of some patients to have honest conversations about the issue with their physicians due to embarrassment. But the numbers speak for themselves. According to a survey of 271 U.S. board-certified gastroenterologists, conducted for Napo Pharmaceuticals by Schlesinger Associates, ninety-three percent of gastroenterologists see patients with HIV/AIDS in their practice and eighty-four percent of the physicians surveyed rank diarrhea in the top three complaints of those patients. Fifty-three percent rank diarrhea as the number-one complaint among patients, with sixty-five percent of those patients reporting it as chronic. It’s an issue that’s both embarrassing and highly inconvenient. We worry constantly about where bathrooms are located, avoid long trips, and miss out on social activities. It makes sexual activity problematic and uncomfortable for many, which
further complicates having a frank conversation with our physicians because it makes doing so even more uncomfortable. Diarrhea can even affect adherence to ART regimens, increasing the possibility of developing resistant viral strains. Another problem we sometimes suffer with in silence, pain. The chafing caused by chronic diarrhea can be excruciating, but we feel, and are made to feel, that “it’s just something you have to live with.” But maybe not anymore. There’s a fairly new medication on the market, Mytesi (crofelemer) and for many, it can provide much-needed relief for non-infectious, chronic diarrhea. Developed by Napo Pharmaceuticals, and sourced from an Amazonian tree bark, Mytesi is a game changer for many patients. Previously, there were few effective treatments for chronic diarrhea in HIV/ AIDS patients that didn’t interfere with ART therapy. The only other possible solution was undergoing a battery of testing before one’s HIV medications could be changed. If that worked at all, it could be problematic because of the possibility of developing resistance to a whole class of HIV drugs. Mytesi requires much less testing, just verification that the diarrhea isn’t infectious in origin and a colonoscopy to rule out other possible causes. It’s a pill that is taken twice a day (with or without food), has few side effects, and does not interfere with ART therapy. It’s the only antidiarrheal studied and approved by the U.S. FDA for the symptomatic relief of noninfectious diarrhea in adults living with HIV/AIDS and on ART therapy. So, how effective is Mytesi? In recent clinical trials, almost ninety percent of patients had a decrease in watery stools after twenty weeks of treatment. Of those with a decrease, eighty-three percent had at least a fifty-percent reduction in their diarrheal
episodes and fifty-six percent had complete resolution of their symptoms. One other issue that we have to deal with as patients is cost. The best medication for a problem is of no use if it is out of reach financially. Already 100 percent of the top ten commercial insurance companies are covering Mytesi as well as most state’s Medicaid programs. Roughly one-third of ADAP programs, lifelines for people living with HIV, are covering it in their formularies. That’s not ideal, but this is a new medication and hopefully coverage will spread to the other states. Napo Pharmaceuticals itself offers co-pay coupons at www. Mytesi.com. These may also be available at your physician’s office. All of this is great news, and it makes a conversation with your doctor more than worthwhile. And that’s where we come in. Roughly half of physicians are still not aware of Mytesi. It’s up to us, as patients, to be our own best healthcare advocates and let them know if we have to. It’s also time to get over the embarrassment. There’s no need for it, doctors have heard and seen it all. They deal with highly personal and delicate issues every day. There’s no reason to suffer in silence and just live with a condition that causes so much inconvenience and discomfort if there’s something that can be done about it. So, take a look at www.mytesi.com. Arm yourself with information and speak up. It’s time to take responsibility for our own healthcare and our quality of life. John Francis Leonard pens the Bright Lights, Small City for A&U. A&U • NOVEMBER 2017
illustration by Timothy J. Haines
about a common complaint
Chip Alfred a new consensus statement regarding the
role of treatment as prevention in hiv criminalization reform gains support
and who will be subject to the laws. Those are the folks who are most likely already neglected by the system. It’s complex, and we needed guidance from experts.” “The laws have always been unjust,” Boulton remarks. “We reject the laws because they discriminate against people solely on the basis of health status; they are also very stigmatizing.” She explains that the main problem isn’t that these criminal laws are being used to prosecute people who are undetectable. It’s that most of the laws don’t require intent to harm, any meaningful risk of harm, or transmission in order to prosecute PLHIV. “The laws punish people who had no intent to do any harm, and the punishments are extremely harsh.” At press time, more than seventy endorsers had signed on to the consensus statement. The originating endorsers hope to see these resources disseminated as widely as possible. The purpose of the Consensus Statement is to serve as a resource in efforts to modernize HIV criminal laws, particularly for statewide coalitions and advocates. The website (www.hivtaspcrimlaw.org) provides links to a variety of resources that can help support the use of the statement, as well as an FAQ. “We want people to be mindful of the unintended consequences of pursuing laws that could exclude people who are not virally suppressed,” Boulton comments. “We want to see laws that recognize a much broader scope of risk reduction measures—not just
if a person was virally suppressed. We want to recognize all the things a person could have done to reduce risk whether that’s using a condom, pulling out, and being on treatment.” She says she looks forward to having more conversations with advocates on the state level and getting people to pause and focus on reform efforts that address the challenges facing all people living with HIV. Richman adds, “Our work with U=U was about changing the definition of what it means to live with HIV. That impacts everything including the laws that criminalize it. If being on effective treatment means there is no risk of transmission, that’s a defense against laws that are based on risk. U=U is a movement created by people with HIV for everyone living with HIV.” He says that U=U has a tremendous impact on HIV prevention, but the heart of the campaign is social justice. “We can’t leave anyone behind. None of us living with HIV is inherently dangerous because of our sero status, and the laws need to reflect that.” To view the Consensus Statement on HIV “Treatment as Prevention” in Criminal Law Reform in its entirety or to sign on as an endorser, log on to: www. hivtaspcrimlaw.org./the-consensus-statement/. For more information about U=U, visit www. preventionaccess.org/undetectable. A&U welcomes your HIV criminalization story ideas or suggestions. Please contact Chip Alfred, Editor at Large, at email@example.com. A&U • NOVEMBER 2017
illustration by Timothy J. Haines
n July 13, 2017, ten leading human rights organizations issued the Consensus Statement on HIV “Treatment as Prevention” in Criminal Law Reform, along with an appeal for endorsement from organizations and individuals that support the reform of HIV criminal laws. The statement acknowledges that the original endorsers—The Center for HIV Law and Policy (CHLP), The Counter Narrative Project, Housing Works, the National Association of Criminal Defense Lawyers, the National Center for Transgender Equality, the National LGBTQ Task Force, PFLAG, the Prevention Access Campaign(PAC)/ U=U Campaign, Treatment Action Group, and Women with a Vision—agree “that reliance on viral load or compliance with medical treatment as a basis to reform HIV criminal laws poses dangerous consequences for those who lack access to care. It also contradicts everyone’s basic right to make health care decisions, including whether and when to get treatment, without running afoul of the criminal law.” Kate Boulton, the CHLP staff attorney that led the effort, tells A&U the impetus for the statement came from conversations on the state level about the role of new scientific developments, specifically viral suppression, in advocacy efforts and the reform of HIV criminal laws. “Not everyone in our community is virally undetectable, and we know that treatment access and reaching durable viral suppression is characterized by really significant disparities, including among people of color and other marginalized communities like sex workers or undocumented immigrants,” she says. “We don’t want to be putting forth modernized laws that hinge guilt or innocence or criminal culpability based on your health status or your compliance with a treatment regimen.” Bruce Richman, founding executive director of PAC and the “Undetectable = Untransmittable” campaign, says the purpose of the statement was to provide guidance and resources on how U=U fits into the bigger picture of the modernization of HIV criminal legislation. “Some folks say U=U is the best development for criminalization reform, and others say it will create an underclass of people who are not undetectable
E R U T CUL S THE
D I A OF
Boystown 9: Lucky Days by Marshall Thornton Kenmore Books
t’s 1984, Reagan is running for his second term and private eye Nick Nowak has his hands full again. He’s working for the defense for mobster Jimmy English, whose trial is beginning, and a handsome young man, with blood-drenched clothes from a night out he can’t remember, shows up at his office looking for answers. What follows is a tense, well paced thriller which highlights the skills Thornton picked up with an MFA in screenwriting at UCLA. Reading it, I was able to visualize it fully. It was like watching a great detective film. Thornton brings to life an era beautifully, the eighties in all that was great and much of what was bad. Time and place are evoked with much skill and with cultural details I myself had forgotten. Of course you can’t tell a tale about the life of any gay man and his friends in the eighties without talking about AIDS. Nick’s former partner Ross, who is living with the disease, is here in this book again. He is still living with Nick and his lover, Joseph, and is doing well. Also mentioned again is an ex who has already passed. The shadow of the disease falls heavily on Nick and Joseph. They both have come into sexual contact with men who had AIDS before the recent advent of safe sex with condoms. The development of a conclusive test for the virus is still on the horizon. Like in his other books, Thornton writes some great sex scenes, but HIV and its dangers are always a factor just as it was at the time he is writing about. There’s no escaping it.
But, Boystown 9: Lucky Days is not a heavy book at all; it is what it strives to be, a great thriller. Strong characters, well drawn background, and a fantastic plot make this another great detective story in this entertaining, yet thoughtful series. —John Francis Leonard
Love Slaves of Helen Hadley Hall by James Magruder Chelsea Station Editions
ive graduate students, their assorted friends and lovers, and a self-described “Protoplasmic emanation from a portrait in oils” are living in the ghost’s eponymous residence at Yale, Helen Hadley Hall. Helen, our narrator and host and the subject of a portrait in the hall’s entrance, recounts the adventures of her favorite class, that of the 1983, ’84
school year, with love and sensitivity and a bemused and watchful eye. Being 1983, and that her male favorites are mostly gay or at least bi, AIDS is at the forefront of all their minds. There were 3,500 recorded cases of individuals with AIDS that year, half of whom had died. To some characters, the realities of the plague seem far removed from their dayto-day lives, hours away in urban centers and among much older men than they. One protagonist smirks: “I’m too young to get it. And when I find the right guy to settle down with, we’ll only have sex with each other.” Never mind that he’s currently on his forty-eighth sexual conquest. AIDS serves to put the piece into context, but it’s not what drives the novel’s clever and fast-moving plot. This is a sparkling comedy of errors built on sharp and witty dialogue and banter that manages to ring quite authentic. Its characters speak and interact the way that young, Ivy League graduate students of the decade would. Helen Hadley may have been an Edwardian heiress in a mariage blanc, but the students whose lives she follows have kept her current and relevant. Magruder draws a compelling portrait of characters, both male and female, who are all too human and frail. As in life, imbroglio don’t always come with a happy ending, but they always come with hard won lessons learned. Accounts of the plague dealing with the men hardest hit, those above thirty, abound in literature. But this novel provides us with a younger perspective from young men living outside of the urban gay ghettos. It’s a unique and clever tale of sex and love from the perspective of the young. —J.F.L. Follow John Francis Leonard on Twitter @ JohnFrancisleo2. A&U • NOVEMBER 2017
A Calendar of Events
photo courtesy National AIDS Memorial Grove
he National AIDS Memorial Grove invites you to join them at their annual Light in the Grove fundraising gala on Thursday, November 30, 2017, the eve of World AIDS Day. At this gala, always a sell-out, guests experience a moving candlelight reflection in the Circle of Friends, the heart of the Memorial, then walk through the spectacularly lit Redwood Grove to a beautiful banquet site. Inside, guests enjoy cocktails, hors d’oeuvres, and a buffet dinner with special musical and artistic performances. The National AIDS Memorial Grove, located in San Francisco’s Golden Gate Park, is a hallowed space in the national landscape where people touched directly or indirectly by AIDS can gather to heal, hope, and remember. Light in the Grove’s theme this year is “Bending the Arc Towards Justice,” capturing the spirit of hope, determination and resistance that has been at the foundation of the National AIDS Memorial Grove—and the community’s response to the AIDS pandemic—since the beginning. The Grove is proud to honor former State Senator Mark Leno, a longtime friend of the Grove. Leno has been a tireless champion for civil rights, for the LGBT community, and for HIV/AIDS organizations. Money raised from Light in the Grove gala will help fund the care and upkeep of the Memorial, as well as the Pedro Zamora Young Leaders Scholarship Program, and the Surviving
Voices AIDS Oral History Initiative, which collects personal and community stories about AIDS, helping to guarantee that these stories will forever be remembered. Date: November 30; time: 6–9:30 p.m.; location: National AIDS Memorial Grove, Nancy Pelosi Dr & Bowling Green Dr, Golden Gate Park, San Francisco, California; tickets: starting at $250. Purchase your tickets and tables to Light in the Grove now: http://bit.ly/LTG2017. For more information, log on to: www. aidsmemorial.org.
into our food. “So sorry,” apologizes the handsome chap, playing with his friends. I take advantage of the interruption.
Sometimes that isolation is self-imposed. They are too shell shocked to consider getting close to others after having lost so many. [I give a knowing nod.] Other times it comes from being rejected by a person who identifies as HIV-negative and [is] reactive to fear and ignorance. My work has sought to continuously support people to build a narrative that helps them to make meaning out of loss, uncertainty, confusion, rejection, and survivor’s guilt. Recognizing strength, resiliency, creativity, humor, and courage have been integral to this journey.
continued from page 19
Damon, what’s your all time fave film and what was the last country you visited? I first saw Harold and Maude when I was fourteen. Never before or after has a movie so blatantly and beautifully portrayed subversion of the status quo, survival through trauma, humor about death, and shocking expressions of sexuality. Bravo. Exceptional choice! And I was in London about a year ago, shortly after the election, and the U.S. was a laughingstock to them…rightfully so. Puh-leez [I say with dread] don’t get me started on that billionaire bully. The man is embarrassing. [I stop myself.] Moving on! In your practice, my dear, what is the major HIV issue that clients are dealing with? Not knowing what undetectable means! [He remarks with gravity.] Seriously, in New York City, in 2017, people living with HIV who have been undetectable for years are still being told they present a risk to others. So conveying the truth to them, followed by their outrage and betrayal that this information did not come from the primary doctor who supposedly is there to NOVEMBER 2017 • A&U
care for them, has been a consistent issue this past year. Absurd. Shameful. What has remained consistent in my work the last two decades is the sense of isolation and trauma that many people living with HIV have been coping with.
What a needed support you are, Damon. Thank you for your service. I mean it. Tell me, what do you find is the number-one reason why younger “kids” are acquiring HIV? [He instantly replies.] Not being given adequate information and/or resources by leaders in their communities. If they receive any kind of sexual health information it is generally based on telling them what not to do [he takes a breath]…versus… embracing and celebrating sexuality. Dig in deeper with Damon at: DamonLJacobs.com. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com.
continued from page 11
Are there any observations you might want to make about the “other” long-term survivors, the friends and family of those who have loved (and sometimes lost) the HIV-positive? I lived in New York from 1980 till 2004. How well I remember listening to a gay friend read aloud to me, in 1981, that very first, buried article in the New York Times; then and there, he predicted the looming epidemic. (A dozen years later, he would kill himself despite escaping the virus.) I still marvel at how few essential friends I lost to AIDS itself—two close coworkers, a college classmate, many acquaintances and neighbors, but my nearest and dearest were spared. Only later, after the emergence of the protease inhibitors, did I find out that a few of my apparently healthy friends were HIV-positive but had kept it a secret. In one case, a longtime friend confided his status to me only when he learned about my cancer diagnosis—as only then could I be empathic. I felt both concerned and hurt. So many conflicting emotions surrounded the risks and stigma of HIV. Trust did not come cheap. Over the last twenty years, discussion of the plague years has diminished, as has the sacred mourning of those who died, yet now, whenever someone in my age-group dies of “something else,” a sense of injustice rears its head among those who
did lose numerous loved ones to AIDS. How quickly we recall, from our twenties and thirties, the too-many funerals, obituaries, sundered careers—even children losing parents—and rage at the realization that having endured all those untimely deaths does not spare us from enduring what will now be the tightening circle of “timely” deaths. There is no lifetime quota of loss. And some friends tell me that watching elderly parents crumble and fail only reminds them what it was like to watch someone far younger die such a ghastly, prolonged death—how irrelevant nobility and grace are under such circumstances; how much anger, fear, and guilt are involved. The scars can be reopened on a dime. All your books include characters whose lives are in some way, directly or indirectly, influenced by the effects of HIV/AIDS on our moment in history. In A House Among the Trees, there is even a character dying of AIDS at a time when the protease inhibitors were coming into wide use, saving so many lives. Why is that? Well, first of all, as Michael Friedman’s recent death proves, AIDS is still a potentially fatal disease. The retrovirals have kept many people alive, and thriving, for decades—but they never did and still do not work for everyone; or they become ineffective. There is a dangerous wave of
denial out there, too. I do not, however, write about the ripple effects of HIV for political reasons. Recently, while listening to my eighty-four-year-old mother reminisce (yet again!) about her childhood memories of World War II—the literal toll it took among her older siblings’ peers, the deprivations of rationing, the fear that German or Japanese armies would invade--something struck me. I, too, lived through a war: the plague years. In fact, I lived on one of its worst battlefields. I wasn’t a soldier, but I was a witness. A war is not just the sum of deaths it causes; it changes everything from political agendas to the arts. It leads to activism and resistance, to suspicion and secrecy, to acts both fearless and fearful. And those who live through any war are haunted forever. Is it tiresome to revisit that war, again and again? Sometimes. But to set it aside, to leave it out of our stories, is worse. As a long-term blogger for several prominent websites, Mark Olmsted writes extensively about the intersections of the personal and political, whether the subject is HIV, the criminal justice system, or creativity as the ultimate expression of personal spirituality. He recently published a memoir about his experience in prison, Ink from the Pen. Visit his website at: www.lavenderisthenewblack.com. A&U • NOVEMBER 2017
NOVEMBER 2017 â€¢ A&U
[a portrait by sean black]
Aryah Lester “Dealing with intersections of race and gender, it is easy to doubt or victimize ourselves. It is imperative to find your true self-worth: mentally, emotionally, and socially. By doing so we can see life anew while balancing our fallacies with love. Together we can sway public opinion and demolish stigma.”
Aryah Lester, speaker/author/educator, is a TWOC in Florida. Ms. Lester was Chair of the State of Florida Health Department’s Transgender WorkGroup, former Chair-Elect of the Miami-Dade HIV/AIDS Partnership, and VP of Unity Coalition. Ms. Lester is a board member of EQFL’s TransAction Florida committee, and founded TransArt and Trans-Miami. She sits as member on the NASTAD Transgender Networking Group and contracts with Arianna’s Center.
Sean Black is a Senior Editor of A&U. 64
A&U • NOVEMBER 2017
TREATMENT LOWERS THE AMOUNT OF HIV IN YOUR BODY. AND HELPS LOWER THE CHANCE OF PASSING HIV ON.
There is no cure for HIV, but treatment can help protect your health and the people you care about. Talk to a healthcare provider and visit HelpStopTheVirus.com Â© 2016 Gilead Sciences, Inc. All rights reserved. UNBC3046 04/16
In adults with HIV on ART who have diarrhea not caused by an infection
IMPORTANT PATIENT INFORMATION This is only a summary. See complete Prescribing Information at Mytesi.com or by calling 1-844-722-8256. This does not take the place of talking with your doctor about your medical condition or treatment.
What Is Mytesi? Mytesi is a prescription medicine used to improve symptoms of noninfectious diarrhea (diarrhea not caused by a bacterial, viral, or parasitic infection) in adults living with HIV/AIDS on ART. Do Not Take Mytesi if you have diarrhea caused by an infection. Before you start Mytesi, your doctor and you should make sure your diarrhea is not caused by an infection (such as bacteria, virus, or parasite).
Possible Side Effects of Mytesi Include:
Tired of planning your life around diarrhea?
Enough is Enough Get relief. Pure and simple. Ask your doctor about Mytesi. Mytesi (crofelemer): • Is the only medicine FDA-approved to relieve diarrhea in people with HIV • Treats diarrhea differently by normalizing the flow of water in the GI tract • Has the same or fewer side effects as placebo in clinical studies • Comes from a tree sustainably harvested in the Amazon Rainforest What is Mytesi? Mytesi is a prescription medicine that helps relieve symptoms of diarrhea not caused by an infection (noninfectious) in adults living with HIV/AIDS on antiretroviral therapy (ART). Important Safety Information Mytesi is not approved to treat infectious diarrhea (diarrhea caused by bacteria, a virus, or a parasite). Before starting you on Mytesi, your healthcare provider will first be sure that you do not have infectious diarrhea. Otherwise, there is a risk you would not receive the right medicine and your infection could get worse. In clinical studies, the most common side effects that occurred more often than with placebo were upper respiratory tract (sinus, nose, and throat) infection (5.7%), bronchitis (3.9%), cough (3.5%), flatulence (3.1%), and increased bilirubin (3.1%). For Copay Savings Card and Patient Assistance, see Mytesi.com
Please see complete Prescribing Information at Mytesi.com. NP-390-9
RELIEF, PURE AND SIMPLE
• Upper respiratory tract infection (sinus, nose, and throat infection) • Bronchitis (swelling in the tubes that carry air to and from your lungs) • Cough • Flatulence (gas) • Increased bilirubin (a waste product when red blood cells break down) For a full list of side effects, please talk to your doctor. Tell your doctor if you have any side effect that bothers you or does not go away. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
Should I Take Mytesi If I Am:
Pregnant or Planning to Become Pregnant? • Studies in animals show that Mytesi could harm an unborn baby or affect the ability to become pregnant • There are no studies in pregnant women taking Mytesi • This drug should only be used during pregnancy if clearly needed A Nursing Mother? • It is not known whether Mytesi is passed through human breast milk • If you are nursing, you should tell your doctor before starting Mytesi • Your doctor will help you to decide whether to stop nursing or to stop taking Mytesi Under 18 or Over 65 Years of Age? • Mytesi has not been studied in children under 18 years of age • Mytesi studies did not include many people over the age of 65. So it is not clear if this age group will respond differently. Talk to your doctor to find out if Mytesi is right for you
What Should I Know About Taking Mytesi With Other Medicines? If you are taking any prescription or over-the-counter medicine, herbal supplements, or vitamins, tell your doctor before starting Mytesi.
What If I Have More Questions About Mytesi? For more information, please see the full Prescribing Information at Mytesi.com or speak to your doctor or pharmacist. To report side effects or make a product complaint or for additional information, call 1-844-722-8256.
Rx Only Manufactured by Patheon, Inc. for Napo Pharmaceuticals, Inc. San Francisco, CA 94105 Copyright © Napo Pharmaceuticals, Inc. Mytesi comes from the Croton lechleri tree harvested in South America.
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