A&U November 2015 by A&U: America's AIDS Magazine

NOVEMBER 2015 • ISSUE 253 • AMERICA’S AIDS MAGAZINE

jonathan GROFF

THE ACTOR IS LOOKING TOWARD A WORLD FREE OF HIV STIGMA

heart-shaped world

GREG WILSON ADVOCATES FOR US TO LOVE OURSELVES

KISS ON MY LIST

CHECK OUT GIFT IDEAS FROM amfAR, M•A•C AIDS FUND, REACH LA, (RED) & MORE

What is STRIBILD? STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL of virus in their blood) and whose healthcare provider determines that they meet certain other requirements. STRIBILD combines 4 medicines into 1 pill to be taken once a day with food. STRIBILD is a complete single tablet regimen and should not be used with other HIV-1 medicines. STRIBILD does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking STRIBILD. 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 STRIBILD? STRIBILD can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain.

• You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking STRIBILD, your hepatitis may suddenly get worse. Do not stop taking STRIBILD without first talking to your healthcare provider, as they will need to monitor your health. STRIBILD is not approved for the treatment of HBV.

Who should not take STRIBILD? Do not take STRIBILD if you: • Take a medicine that contains: alfuzosin, carbamazepine, dihydroergotamine, ergotamine, methylergonovine, cisapride, lovastatin, simvastatin, pimozide, sildenafil when used for lung problems (Revatio®), triazolam, oral midazolam, phenobarbital, phenytoin, rifampin or the herbal supplement St. John’s wort. • For a list of brand names for these medicines, please see the Brief Summary on the following pages. • Take any other medicines to treat HIV-1 infection, or the medicine adefovir (Hepsera®).

What are the other possible side effects of STRIBILD? Serious side effects of STRIBILD may also include: • New or worse kidney problems, including kidney failure. Your healthcare provider should do regular blood and urine tests to check your kidneys before and during treatment with STRIBILD. If you develop kidney problems, your healthcare provider may tell you to stop taking STRIBILD. • Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicines. • 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 STRIBILD. The most common side effects of STRIBILD include nausea and diarrhea. 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 STRIBILD? • All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking STRIBILD without first talking with your healthcare provider. • If you take hormone-based birth control (pills, patches, rings, shots, etc). • If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD. • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in STRIBILD can pass into breast milk, and it is not known if this can harm the baby. 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 Brief Summary of full Prescribing Information with important warnings on the following pages. *STRIBILD is a combination of the medicines TRUVADA (emtricitabine and tenofovir disoproxil fumarate), TYBOST (cobicistat), and VITEKTA (elvitegravir).

STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL of virus in their blood) and whose healthcare provider determines that they meet certain other requirements. STRIBILD does not cure HIV-1 or AIDS.

I started my personal revolution Talk to your healthcare provider about HIV-1 treatment. STRIBILD is a complete HIV-1 treatment in 1 pill, once a day that combines the medicines in TRUVADA + TYBOST + VITEKTA.* Ask if itâ&#x20AC;&#x2122;s right for you.

www.STRIBILD.com

Patient Information STRIBILD® (STRY-bild) (elvitegravir 150 mg/cobicistat 150 mg/emtricitabine 200 mg/ tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information. What is STRIBILD? • STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD can also be used to replace current HIV-1 medicines for some adults 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 past HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements. • STRIBILD is a complete HIV-1 medicine and should not be used with any other HIV-1 medicines. • STRIBILD does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects, including: 1. Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take STRIBILD or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis:

2. Severe liver problems. Severe liver problems can happen in people who take STRIBILD. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: • your skin or the white part of your eyes turns yellow (jaundice) • dark “tea-colored” urine • light-colored bowel movements (stools) • loss of appetite for several days or longer • nausea • stomach pain You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. 3. Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take STRIBILD, your HBV may get worse (flare-up) if you stop taking STRIBILD. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. • Do not run out of STRIBILD. Refill your prescription or talk to your healthcare provider before your STRIBILD is all gone • Do not stop taking STRIBILD without first talking to your healthcare provider • If you stop taking STRIBILD, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking STRIBILD Who should not take STRIBILD? Do not take STRIBILD if you also take a medicine that contains: • adefovir (Hepsera®) • alfuzosin hydrochloride (Uroxatral®) • carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®) • cisapride (Propulsid®, Propulsid Quicksolv®)

• have trouble breathing

• ergot-containing medicines, including: dihydroergotamine mesylate (D.H.E. 45®, Migranal®), ergotamine tartrate (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), and methylergonovine maleate (Ergotrate®, Methergine®)

• have stomach pain with nausea or vomiting

• lovastatin (Advicor®, Altoprev®, Mevacor®)

• feel cold, especially in your arms and legs

• midazolam, when taken by mouth

• feel dizzy or lightheaded

• phenobarbital (Luminal®)

• have a fast or irregular heartbeat

• phenytoin (Dilantin®, Phenytek®)

• feel very weak or tired • have unusual (not normal) muscle pain

• pimozide (Orap®) • rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®) • sildenafil (Revatio®), when used for treating lung problems • simvastatin (Simcor®, Vytorin®, Zocor®) • triazolam (Halcion®) • the herb St. John’s wort Do not take STRIBILD if you also take any other HIV-1 medicines. STRIBILD is not for use in people who are less than 18 years old. What are the possible side effects of STRIBILD? STRIBILD may cause the following serious side effects:

What should I tell my healthcare provider before taking STRIBILD? Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, bone, or liver problems, including hepatitis B infection • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. - There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk with your healthcare provider about how you can take part in this registry.

• See “What is the most important information I should know about STRIBILD?”

• If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take STRIBILD.

• New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking STRIBILD. Your healthcare provider may tell you to stop taking STRIBILD if you develop new or worse kidney problems.

- You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

• Bone problems can happen in some people who take STRIBILD. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. • Changes in body fat can happen in people who take HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms and face may also happen. The exact cause and long-term health effects of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having any new symptoms after starting your HIV-1 medicine. The most common side effects of STRIBILD include: • Nausea • Diarrhea Tell your healthcare provider if you have any side effect that bothers you or that does not go away. • These are not all the possible side effects of STRIBILD. For more information, ask your healthcare provider. • Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

- Two of the medicines in STRIBILD can pass to your baby in your breast milk. It is not known if the other medicines in STRIBILD can pass into your breast milk. - Talk with your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements: • Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Some medicines may interact with STRIBILD. Do not start any new medicines while you are taking STRIBILD without first talking with your healthcare provider. • Do not take STRIBILD with any products that contain the herbal supplement St. John’s wort. • If you take a medicine for indigestion (antacid) that contains aluminum and magnesium hydroxide or calcium carbonate, take it at least 2 hours before or after you take STRIBILD. Keep STRIBILD and all medicines out of reach of children. This Brief Summary summarizes the most important information about STRIBILD. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about STRIBILD that is written for health professionals, or call 1-800-445-3235 or go to www.STRIBILD.com. Issued: July 2015

GILEAD, the GILEAD Logo, HEPSERA, STRIBILD, and the STRIBILD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. © 2015 Gilead Sciences, Inc. All rights reserved. STBC0195 08/15

c o n t e n t s November 2015

46 Cover Actor Jonathan Groff Talks with A&U’s Dann Dulin About How His TV Show Looking Helped Nurture Conversations About HIV & What We Need to Do to Keep HIV Prevention at the Forefront of Our Minds

Departments

Features 6

Frontdesk

32 Gallery In a New Exhibit, Lester Blum & Vladimir Rios Tap into the Strength of Our Collective Memory

Mailbox

NewsBreak

Ruby’s Rap

36 Ribbons Into Bows A&U’s 14th Annual Gift Guide Helps You Help Others in Need

viewfinder

42 Breaking the Cocoon AIDS Advocate Greg Wilson Has a Heart-to-Heart About His Memoir 52 A Not-So-Simple Journey With His Foundation, Jerry Hughes Fights the Epidemic in India 56 Fare Exchange Artist Kurt Schwartzmann Pays Tribute to Drivers of Compassion 26 The Heaven of Our Eyes Nonfiction by Raymond Luczak cover by Jeff Vespa/Contour by Getty Images

Our Story, Our Time

Just*in Time

TYing It All Together

Brave New World

lifeguide 58

Hep Talk

Destination: Cure

The Whole Perspective

Treatment Horizons

The Culture of AIDS

Lifelines

Survival Guide

A&U Frontdesk

What Are Words For

ow and again I come undone trying to write this letter to the reader. Very familiar with my writer’s block, my managing editor emailed me last week about the status of my column. He needed to send it to production. To Chael’s credit, he was anxious to turn my usual chicken scratches into something a bit more eloquent. He even asked me if I wanted to let him ghostwrite the editorial this time, but I insisted that I would find my muse. It happened but not in the way I expected. In the middle of the night I sat down on my office floor and spread out literally hundreds of back issues of A&U, even going back to 1991. Looking at an old issue of Helen Hunt on the cover (when it was still called Art & Understanding), I asked myself why I had shortened the name of the magazine. GQ,—wasn’t it called Gentleman’s Quarterly until 1967? And Billboard (the music magazine) was once called Billboard Advertising! I even remember some readers would come up to me at healthcare conferences and ask me, “what does A&U stand for?” When they found out inevitably a smile of recognition would appear on their faces. They understood. I know some of the earliest readers liked the name “Art & Understanding,” and liked knowing that the original name was inspired by an old Elvis Costello song called “Peace, Love and Understanding.” They listened; some of them even suggested I put something more “AIDSy” in the title. In the end, they said to keep “A&U.” But I worry that “AIDS” is not prominent enough as part of the subtitle. Isn’t AIDS stigma caused in part by the unknown? By not seeing or embracing one’s HIV identity? If we’re in the AIDS closet, then the stigma only increases. The stigma is a whole lot easier to perpetuate if we’re afraid of our own virus. Only by being who we are can we cause the world to change its attitudes toward our community. AIDS stigma still exists, and it’s my guess that its existence has cost too many lives. Not mentioning the words “AIDS” or “HIV” only reinforces stereotypes and misconceptions. So maybe I should rename the magazine after all and make “HIV” front and center. Feel free to send

A M E R I C A’ S A I D S M A G A Z I N E issue 253 vol. 24 no. 11 November 2015 editorial offices: (518) 426-9010 fax: (518) 436-5354

me suggestions. You’re my inspiration (and my muse). And, as this is November, an inspirational month for so many of us in the AIDS community, when we’re thinking about Thanksgiving and why we’re so thankful for being alive after so many years of living with our viral identity, let me just say I am very grateful for all of our readers, longtime fans and new. In fact, with close to twenty years of effective drug cocktails on the market, today’s newly diagnosed are being given choices for how to treat their HIV—as well as forging new identities. When we find the right meds, they not only help suppress our viral loads and reconstitute our immune systems, they allow us the chance to nurture ourselves, sometimes truly for the first times in our lives. We are not dying and being defined by others (as “victims” or “vectors of disease”). We are defining ourselves in liberating ways. That’s why Jonathan Groff is so proud of his show, Looking (cancelled but soon we will revisit the characters in a wrap-up movie). It was the first show in a long time to incorporate individuals living with HIV or at risk for contracting HIV, and many fans were heartened. As he relates to A&U’s Dann Dulin, even his doctor took the time to tell him: “‘I’ve been treating people for HIV since 1982 and no one has ever come in talking about the disease until now after those [HIV-themed] episodes aired....’” And while Groff is making a difference on-screen, others are making a difference on the ground. In this issue, we feature the stories of two men, both of them living with HIV (though on opposite sides of the world!): AIDS advocate Greg Wilson and ASO founder Jerry Hughes. Both men share their journeys—how they had to come to terms with their diagnoses, how they nurtured new selves, and how they decided to help others impacted by HIV and AIDS. We’re thrilled to share their inspiring stories, and they represent the DNA of A&U—art, understanding, and the forging of a new empowering identity.

DAVID WAGGONER

Editor in Chief & Publisher David Waggoner Managing Editor: Michael Needle Senior Editors: Dann Dulin, Sean Black Editor at Large: Chip Alfred Special Projects Editor: Lester Strong Literary Editor: Brent Calderwood 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, V. Anderson, Heather Arculeo, Larry Buhl, Ruby Comer, Nancy Ellegate, Diane Goettel, Sally Hessney, Keiko Lane, Angela Leroux-Lindsey, Sherri Lewis, Mark Rebernik, Dale Reynolds, Elizabeth Rodgers, David Rosenberg, Corey Saucier, Mariel Selbovitz, Justin B. Terry-Smith, Patricia Nell Warren, Chuck Willman, Jeannie Wraight, Robert Zukowski Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Fred Brashear, Jr., Tim Courtney, Duane Cramer, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, 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 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, 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: mailbox@ aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2015 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 12210-2743, USA

Printed in USA • Visit our Web site at www.aumag.org

A&U Mailbox

x o b l i ma The Doctor Is In Is the doctor on call? I guess so. I would say that the doctor is not only beautiful, but also is very smart and intelligent. I have read Dr. Rachael Ross’s Down Right Feel Right-Outercourse: For Her & For Him and found the book very thought-provoking [cover story, “The Ins & Outs of Happy Sex,” by Dann Dulin, September 2015]. She covers a lot of things that we are not talking about these days about safe sex, or, as she says, safer sex. I agree completely when she says, “Such dialogue is missing from sex education and HIV prevention. It’s terrible.” She also says in reference to college students, “They...have...no... idea!” It is truly sad and devastating the ignorance about sex. I just think that Dr. Ross is doing a really important thing in educating people. —Marvin St. Clair Richmond, Virginia

I was really impressed by what Dr. Ross had to say about the African-American community and HIV/AIDS. She made a comment, saying, “Being in college, sex was in the air. We’d be at parties and people were having sex up against the wall. I said to myself, ‘This is going to be a black people problem— watch.’ I knew it!” Sadly I have to agree that AIDS is hitting my local community and one cousin told me recently that he is HIV-positive. We definitely need more education and safe sex information. We’re in crisis mode. I’m glad people like Dr. Ross speak up. It really helps break the ice. —Phyliss Van Buren San Mateo, California

Put The Music On

Hey, I just love Derek Canas [“Hey Mr. DJ!” by Sean Black, August 2015]. Where in the hell did you find this guy; is he for real or what? I love that guy, he may be the smallest kid in class but he has a real big heart in wanting to help other people with HIV/AIDS. In getting a blood infusion that was HIV-infected, life may have given him a curve ball, but he has a lot of guts and spunk. I am just jumping with joy that he is doing what he loves and is on the radio being “D-REK.” The ultimate DJ. —Ronny Safire-Dee Winston-Salem, North Carolina

Pictures at an Exhibition Seeing the exhibit, “On the Domestic Front: Scenes of Everyday Queer Life,” I was moved and very touched by two photos [Gallery, September 2015]. The

first photo was by Peter Hujar, entitled Christopher Street #3. I was wondering what happened to that lovely looking man in the center of the photo—did he make it through the AIDS epidemic? I hope so. Or did he also die of AIDS? Something to think about? Also the photo David and Eric, of two men living with AIDS, lying on the bed, touching hands. Thank you, Leslie-Lohman, for a great exhibit. —Moira Kennedy London, UK Send e-mail to: mailbox@aumag.org Send letters to: Mailbox, A&U, 25 Monroe Street, Suite 205, Albany, NY 12210 Or click on “Mailbox” on our Web site’s home page: www.aumag.org Tweet Us @au_magazine Facebook: http://on.fb.me/AUFANPAGE All correspondence requires name, address, and daytime phone number for confirmation. Letters may be edited for length and clarity.

A&U • NOVEMBER 2015

photo by Sean Black

“[Safer sex] dialogue is missing from sex education and HIV prevention. It’s terrible.”

NEWSBREAK Life Positive In honor of World AIDS Day, December 1, author, journalist and actor Nicholas Snow is offering a free digital download of his memoir about living with HIV. In Life Positive: A Journey to the Center of My Heart, the activist shares his story about his journey toward self-discovery and self-acceptance, recovery, and publicly disclosing his positive diagnosis, which came not without disappointment after years of navigating safer sex. He shares his story on paper and in real-life to inspire others to find the power to be strong and to advocate for increased HIV testing. In a prepared statement, Snow shares what inspired him: “This book is dedicated to the tens of millions of people in the world living with HIV, most of whom do not yet know their status; to everyone who fights for us; and to those who still fear us. My personal mission statement is to honor and express my creativity in a way that makes a difference.” In A&U’s January 2014 interview, which coincided with the memoir’s release, Snow told writer Alina Oswald about why he stepped forward to add his voice to the chorus of those helping to break down barriers: “The key to the end of the AIDS epidemic and [related] stigma is for us to normalize the experience of having HIV, and embrace people living with HIV, and treat them no different than anybody else.” The instructions to access your free copy of Life Positive are simple. Download the Kindle App (for Mac or Android) to any Internet-connected, app-enabled smart phone, computer, tablet or other device. Then, any time from December 1–5, 2015 (in any time zone), visit www.LifePositiveBook.com (which redirects to the book’s official Amazon.com page) to download your free Kindle copy. Members of the media, reviewers, and anyone who wishes to promote the free World AIDS Day giveaway may download a copy early, following the same steps, from November 3–6, 2015. Amazon Prime subscribers may check out the book with their Kindle as part of their membership benefit. For more information and to listen to Snow’s podcast, visit www.nicholassnow.com.

photos by Alina Oswald

Materials of Survival A new exhibition, “Materials of Survival: Designs for Living with HIV,” featuring the art and photography of Grahame Perry will open this month at Magnet SF. In our June 2015 interview A&U’s Brent Calderwood, Perry delved into the relationship between living with HIV, becoming Every AIDS Obituary, a long-term survivor, and his art: “I think that it wasn’t 2015, archival pigment until I saw that the treatments that I was on were reprint in edition of 25, versing the decline of my immune system, and then the 64 by 60 inches (12 release of the protease inhibitors, that I began to believe panels, 4 by 3, of 16 by in my having a long-term future. The hope of a long life 20 inches). Courtesy which was ripped away by the HIV diagnosis took a while of the LGBT Historical to slowly return.” Society © Bay Area Perry added: “I feel the need to put some of this Reporter (individual journey down in the work I’m creating, as witnesses to obituaries) what went on. It’s easy to forget, and I’m not sure that the stories of survival have been told. Some of us who’ve gone through this are still picking through the rubble and trying to make sense of it.” Intertwining personal and communal experiences of long-term surviving, Perry situates his pieces within wider conversations around illness, stigma, health, and survival. In his piece Every AIDS Obituary, for example, Perry bears witness to the loss of life from AIDS-related causes and the work of documenting and understanding our history by assembling twelve panels of the thouNOVEMBER 2015 • A&U

S:7.875 in

WHAT IS PREZCOBIX™ ?

• It is not known if PREZCOBIX™ is safe and effective in children under 18 years of age. • When used with other antiretroviral medicines to treat HIV-1 infection, PREZCOBIX™ may help:

Medihaler,® Migergot,® Wigraine,® Wigrettes®), methylergonovine (Methergine®), lovastatin or a product that contains lovastatin (Altoprev,® Advicor,® Mevacor ®), lurasidone (Latuda®), oral midazolam (Versed®), pimozide (Orap®), ranolazine (Ranexa®), rifampin (Rifadin,® Rifater,® Rifamate®, Rimactane®), sildenafil (Revatio®) when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin (Simcor,® Vytorin,® Zocor ®), St. John’s Wort (Hypericum perforatum) or a product that contains St. John’s Wort, or triazolam (Halcion®).

○ reduce the amount of HIV-1 in your blood. This is called “viral load.”

• Serious problems can happen if you take any of these medicines with PREZCOBIX.™

○ increase the number of CD4+ (T) cells in your blood that help fight off other infections.

What should I tell my healthcare provider before taking PREZCOBIX™ ?

• PREZCOBIX™ is always taken in combination with other HIV medications for the treatment of HIV-1 infection in adults. PREZCOBIX™ should be taken once daily with food. • PREZCOBIX™ does not cure HIV-1 infection or AIDS, and you may still experience illnesses associated with HIV-1 infection. You must keep taking HIV-1 medicines to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider if you have any questions on how to prevent passing HIV to other people. • Please read the Important Safety Information below and talk to your healthcare provider to learn if PREZCOBIX™ is right for you.

• About all health problems. Tell your healthcare provider if you have liver problems, including hepatitis B or hepatitis C, have kidney problems, are allergic to sulfa (sulfonamide), have diabetes, have hemophilia, or have any other medical condition, are pregnant, breastfeeding, or plan to become pregnant or breastfeed. Tell your healthcare provider if you become pregnant while taking PREZCOBIX.™ • About all medicines you take. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with PREZCOBIX.™ Keep a list of your medicines to show your healthcare provider and pharmacist. Do not start taking a new medicine without telling your healthcare provider. Your healthcare provider can tell you if it is safe to take PREZCOBIX™ with other medicines.

IMPORTANT SAFETY INFORMATION

What are the possible side effects of PREZCOBIX™ ?

What is the most important information I should know about PREZCOBIX™ ?

• The most common side effects of darunavir, one of the medicines in PREZCOBIX,™ include diarrhea, nausea, rash, headache, stomach area (abdominal) pain, and vomiting.

• PREZCOBIX™ may cause liver problems. Some people taking PREZCOBIX™ may develop liver problems which may be life-threatening. Your healthcare provider should do blood tests before and during your treatment with PREZCOBIX.™ ○ Chronic hepatitis B or C infection may increase your chance of developing liver problems. Your healthcare provider should check your blood tests more often. ○ Signs and symptoms of liver problems include dark (tea-colored) urine, yellowing of your skin or whites of your eyes, pale-colored stools (bowel movements), nausea, vomiting, pain or tenderness on your right side below your ribs, or loss of appetite. Tell your healthcare provider if you develop any of these symptoms. • PREZCOBIX™ may cause severe or life-threatening skin reactions or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. Call your healthcare provider right away if you develop a rash. ○ Stop taking PREZCOBIX™ and call your healthcare provider right away if you develop any skin changes with symptoms such as fever, tiredness, muscle or joint pain, blisters or skin lesions, mouth sores or ulcers, red or inflamed eyes like “pink eye” (conjunctivitis). • PREZCOBIX,™ when taken with certain other medicines, can cause new or worse kidney problems, including kidney failure. Your healthcare provider should check your kidneys before you start and while you are taking PREZCOBIX.™ Who should not take PREZCOBIX™ ? • Do not take PREZCOBIX™ with any of the following medicines: alfuzosin (Uroxatral®), cisapride (Propulsid®, Propulsid® Quicksolv), colchicine (Colcrys,® Mitigare,® if you have liver or kidney problems), dronedarone (Multaq®), dihydroergotamine (D.H.E.45®, Embolex ,® Migranal®), ergotamine tartrate (Cafergot ,® Ergomar ,® Ergostat ,®

• Other possible side effects include: ○ High blood sugar, diabetes or worsening diabetes, and increased bleeding in people with hemophilia have been reported in patients taking protease inhibitor medicines, including PREZCOBIX.™ ○ Changes in body fat can happen in people who take HIV-1 medicines. The exact cause and long-term health effects of these changes are not known. ○ Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. These are not all of the possible side effects of PREZCOBIX.™ For more information, ask your healthcare provider. Tell your healthcare provider if you have any side effect that bothers you or that 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. Please see accompanying full Product Information for more details. Janssen Therapeutics, Division of Janssen Products, LP © Janssen Therapeutics, Division of Janssen Products, LP 2015 01/15 008417-140113

027409-150108

• PREZCOBIX™ is a prescription HIV-1 (Human Immunodeficiency Virus 1) medicine used with other antiretroviral medicines to treat HIV-1 infection in adults. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). PREZCOBIX™ contains the prescription medicines PREZISTA® (darunavir) and TYBOST® (cobicistat).

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Wisdom inspired by real people

DISCOVER YOUR WISDOM WITHIN

Visit PREZCOBIX.com to hear wisdom inspired by experts and people like you living with HIV. Ask your provider if Once-Daily* PREZCOBIX™ is right for you.

PREZCOBIX.com *PREZCOBIX™ is taken in combination with other HIV medications for the treatment of HIV-1 infection in adults.

IMPORTANT PATIENT INFORMATION PATIENT INFORMATION PREZCOBIX (prez-koe-bix) (darunavir and cobicistat) tablets Please read this information before you start taking PREZCOBIX and each time you get a refill. There may be new information. This information does not take the place of talking with your healthcare provider about your medical condition or treatment. What is the most important information I should know about PREZCOBIX? • PREZCOBIX may cause liver problems. Some people taking PREZCOBIX may develop liver problems which may be lifethreatening. Your healthcare provider should do blood tests before and during your treatment with PREZCOBIX. If you have chronic hepatitis B or C infection, your healthcare provider should check your blood tests more often because you have an increased chance of developing liver problems. Tell your healthcare provider if you have any of the below signs and symptoms of liver problems. • dark (tea colored) urine • yellowing of your skin or whites of your eyes • pale colored stools (bowel movements) • nausea • vomiting • pain or tenderness on your right side below your ribs • loss of appetite • PREZCOBIX may cause severe or life-threatening skin reactions or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. Call your healthcare provider right away if you develop a rash. Stop taking PREZCOBIX and call your healthcare provider right away if you develop any skin changes with symptoms below: • fever • tiredness • muscle or joint pain • blisters or skin lesions • mouth sores or ulcers • red or inflamed eyes, like “pink eye” (conjunctivitis) • PREZCOBIX when taken with certain other medicines can cause new or worse kidney problems, including kidney failure. Your healthcare provider should check your kidneys before you start and while you are taking PREZCOBIX. See “What are the possible side effects of PREZCOBIX?” for more information about side effects. What is PREZCOBIX? PREZCOBIX is a prescription HIV-1 (Human Immunodeficiency Virus 1) medicine used with other antiretroviral medicines to treat HIV-1 infection in adults. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). PREZCOBIX contains the prescription medicines PREZISTA (darunavir) and TYBOST (cobicistat). It is not known if PREZCOBIX is safe and effective in children under 18 years of age. When used with other antiretroviral medicines to treat HIV-1 infection, PREZCOBIX may help: • reduce the amount of HIV-1 in your blood. This is called “viral load”.

• i ncrease the number of CD4+ (T) cells in your blood that help fight off other infections. Reducing the amount of HIV-1 and increasing the CD4+ (T) cells in your blood may help improve your immune system. This may reduce your risk of death or getting infections that can happen when your immune system is weak (opportunistic infections). PREZCOBIX does not cure HIV-1 infection or AIDS. You must keep taking HIV-1 medicines to control HIV-1 infection and decrease HIV-related illnesses. Avoid doing things that can spread HIV-1 infection to others. • Do not share or re-use needles or other injection equipment. • Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. • Do not have any kind of sex without protection. Always practice safe sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. Ask your healthcare provider if you have any questions on how to prevent passing HIV to other people. Who should not take PREZCOBIX? Do not take PREZCOBIX with any of the following medicines: • alfuzosin (Uroxatral®) • cisapride (Propulside®, Propulsid® Quicksolv) • colchicine (Colcrys®, Mitigare®), if you have liver or kidney problems • dronedarone (Multaq®) • ergot-containing medicines: • dihydroergotamine (D.H.E. 45®, Embolex®, Migranal®) • ergotamine tartrate (Cafergot®, Ergomar®, Ergostat®, Medihaler®, Migergot®, Wigraine®, Wigrettes®) • methylergonovine (Methergine®) • lovastatin or a product that contains lovastatin (Altoprev®, Advicor®, Mevacor®) • lurasidone (Latuda®) • midazolam (Versed®), when taken by mouth • pimozide (Orap®) • ranolazine (Ranexa®) • rifampin (Rifadin®, Rifater®, Rifamate®, Rimactane®) • sildenafil (Revatio®), when used for the treatment of pulmonary arterial hypertension (PAH) • simvastatin or a product that contains simvastatin (Simcor®, Vytorin®, Zocor®) • St. John’s Wort (Hypericum perforatum), or a product that contains St. John’s Wort • triazolam (Halcion®) Serious problems can happen if you take any of these medicines with PREZCOBIX. What should I tell my healthcare provider before taking PREZCOBIX? Before taking PREZCOBIX, tell your healthcare provider if you: • have liver problems, including hepatitis B or hepatitis C • have kidney problems • are allergic to sulfa (sulfonamide) • have diabetes • have hemophilia • have any other medical condition

IMPORTANT PATIENT INFORMATION • a re pregnant or plan to become pregnant. It is not known if PREZCOBIX will harm your unborn baby. Tell your healthcare provider if you become pregnant while taking PREZCOBIX. • Pregnancy Registry: There is a pregnancy registry for women who take antiretroviral medicines during pregnancy. The purpose of the registry is to collect information about the health of you and your baby. Talk to your healthcare provider about how you can take part in this registry. • are breastfeeding or plan to breastfeed. Do not breastfeed if you take PREZCOBIX. • You should not breastfeed if you have HIV-1 because of the risk of passing HIV to your baby. • It is not known if PREZCOBIX can pass into your breast milk. • Talk to your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with PREZCOBIX. Keep a list of your medicines to show your healthcare provider and pharmacist. • You can ask your healthcare provider or pharmacist for a list of medicines that interact with PREZCOBIX. • Do not start taking a new medicine without telling your healthcare provider. Your healthcare provider can tell you if it is safe to take PREZCOBIX with other medicines. How should I take PREZCOBIX? • Take PREZCOBIX exactly as your healthcare provider tells you. • Do not change your dose or stop taking PREZCOBIX without talking to your healthcare provider. • Take PREZCOBIX 1 time a day with food. • If you miss a dose of PREZCOBIX by less than 12 hours, take your missed dose of PREZCOBIX right away. Then take your next dose of PREZCOBIX at your regularly scheduled time. • If you miss a dose of PREZCOBIX by more than 12 hours, wait and then take the next dose of PREZCOBIX at your regularly scheduled time. • If a dose of PREZCOBIX is skipped, do not double the next dose. Do not take more or less than your prescribed dose of PREZCOBIX at any one time. • If you take too much PREZCOBIX, call your healthcare provider or go to the nearest hospital emergency room right away. What are the possible side effects of PREZCOBIX? PREZCOBIX may cause serious side effects including: • See “What is the most important information I should know about PREZCOBIX?” • Diabetes and high blood sugar (hyperglycemia). Some people who take protease inhibitors including PREZCOBIX can get high blood sugar, develop diabetes, or your diabetes can get worse. Tell your healthcare provider if you notice an increase in thirst or urinate often while taking PREZCOBIX. • Changes in body fat can happen in people who take HIV-1 medications. The changes may include an increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms, and face may also happen.

The exact cause and long-term health effects of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having new symptoms after starting your HIV-1 medicine. • Increased bleeding for hemophiliacs. Some people with hemophilia have increased bleeding with protease inhibitors including PREZCOBIX. The most common side effects of darunavir, one of the medicines in PREZCOBIX, include: • diarrhea • nausea • rash • headache • stomach area (abdominal) pain • vomiting Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of PREZCOBIX. For more information, ask your health care provider. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. How should I store PREZCOBIX? • Store PREZCOBIX tablets at room temperature between 68°F to 77°F (20°C to 25°C). Keep PREZCOBIX and all medicines out of reach of children. General information about PREZCOBIX Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use PREZCOBIX for a condition for which it was not prescribed. Do not give PREZCOBIX to other people, even if they have the same symptoms that you have. It may harm them. If you would like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about PREZCOBIX that is written for health professionals. For more information call 1-800-526-7736. What are the ingredients in PREZCOBIX? Active ingredients: darunavir and cobicistat Inactive ingredients: colloidal silicon dioxide, crospovidone, hypromellose, magnesium stearate, and silicified microcrystalline cellulose. The tablets are film-coated with a coating material containing iron oxide black, iron oxide red, polyethylene glycol, polyvinyl alcohol (partially hydrolyzed), talc, and titanium dioxide. Manufactured by: Janssen Ortho LLC, Gurabo, PR 00778 Manufactured for: Janssen Therapeutics, Division of Janssen Products, LP, Titusville NJ 08560 Issued: January 2015 © Janssen Pharmaceuticals, Inc. 2015 027415-150108

NewsBreak

sands of obituaries that appeared in the Bay Area Reporter between 1982 and 2005. Drawing on several years of work, the show is the first time the entire “Materials” series will be exhibited. The exhibition space itself—Magnet SF’s new gallery in the new AIDS Foundation building in the heart of San Francisco’s Castro District—resonates with Perry’s theme, as the press release pointed out: “Because of the neighborhood’s centrality in the struggle against HIV/AIDS, it is especially important for the artist to have the exhibition occur in the heart of the Castro. Many long-term survivors have called the Castro and San Francisco home. This show attempts to address some of the issues for long-term survivors while also placing it in a location which is relevant for gay men negotiating the issues of sexual health today.” The exhibition’s opening reception will be held on November 6, from 8–10 p.m., Magnet SF, 470 Castro Street, San Francisco. For more information about the event, log on to http://j.mp/magnet-show.

Under a beating sun, participants in the tens of thousands—20,000, to be specific—came out on October 11 to wave their banners, stretch their muscles, and join in the community effort that is thirty years-strong and ten kilometers-long: AIDS Walk Los Angeles. At the Opening Ceremony at the Walk’s starting point, West Hollywood Park, participants brushed the sleepies out of their eyes and energized themselves with juices, warm hellos and hugs, and live musical performances. Representatives from APLA and other AIDS service organizers were on-hand to welcome Walkers. “We are incredibly thankful for everyone who raised funds, showed up this morning, and braved the heat to do the Walk with us,” APLA Chief Executive Officer Craig E. Thompson said. “We are at a pivotal moment in the epidemic. The funds raised through the Walk give us an opportunity to really change its arc by ensuring that people living with HIV and AIDS are getting the support and health care they need while now also being able to deliver health care—including HIV testing, STD screening, and PrEP—to HIV-negative individuals in L.A. County. It’s a pretty powerful combination that will have a real impact.” One of many Star Walkers, Yeshe Benedict, shared her message about why she walks on AIDS Walk LA’s Facebook page: “In 1994, I was 9 years old when my dad was diagnosed with AIDS. That same year he passed away at the age of 50. It changed our family forever. I’ll be walking this year’s AIDS Walk LA in his memory and to show my love and support for every family affected by this disease. Walk, donate, volunteer, Clockwise from top: The Beverly Belles; the Kenneth support in any way you can...” Cole AIDS walk team looking fashionable; actor and And representatives from the arts advocate Danny Pintauro community, including, Lea DeLaria [A&U, November 1999], Drew Carey, Jai Rodriguez, Danny Pintauro, Our Lady J, and Nick Wechsler, among many others, were on-hand as well to share their stories. Los Angeles Mayor Eric Garcetti weighed in on the city’s current struggles to combat the crisis and know one’s status: “We want people to go out there and take advantage of free testing, and to spread the word.” He also made special mention of the impact of HIV/AIDS on the transgender community: “We need trans equality in this city and in this country and in this world, today, right now, right here.” California State Senators Ricardo Lara, Isadore Hall, and Ben Allen; California State Assembly members Mike Gipson and Adrin Nazarian; Los Angeles County Assessor Jeffrey Prang; West Hollywood Mayor Pro Tem Lauren Meister, who spoke on behalf of the AIDS Walk host city; West Hollywood City Councilmembers John D’Amico, John Duran, and John Heilman; L.A. City Councilmember Paul Koretz; and L.A. City Controller Ron Galperin also showed their support. The Sposato Brothers’ music helped welcome Walkers as they made their way toward the finish line. The event raised $2,375,946 for the vital services of APLA and twenty other ASOs in L.A. County. AIDS Walk LA, since 1985, has raised more than $80 million. For more information, please visit la.aidswalk.net. To connect with the online community on Facebook, simply join the AIDS Walk Los Angeles Facebook Fan Page. To view exclusive video content, visit the AIDS Walk Los Angeles YouTube channel at youtube.com/aidswalkla. To receive instant updates, follow “@AIDSWalkLA” on Twitter.

A&U • NOVEMBER 2015

photos by Sean Black

AIDS Walk LA

OVER 1500 POSTCARD-SIZE ARTWORKS BY ESTABLISHED AND EMERGING ARTISTS

Artworks displayed anonymously. Artist’s name revealed after purchase. First-come, first-served.

BENEFIT SALE 2016

Saturday January 30 from 10 – 6 $85 each. Buy 4 & get the 5th as our Thank You. Sunday January 31 from 12 – 4 $85 each. Buy 2 & get the 3rd as our Thank You. Benefit Sale is first-come, first-served. $5 suggested admission. Works are signed on the back and displayed anonymously. Artist’s name revealed only after purchase. Cash, check or credit card (MC VISA AMEX) accepted.

PREVIEW PARTY 2016 Friday January 29 from 6 – 8

$50 admission includes one raffle ticket. Sneak Peek the only opportunity to see the entire exhibition. No sales. Silent Auction of small works and VIP access. Raffle winner selects the first postcard. More details at visualAIDS.org NOVEMBER 2015 • A&U

526 W 26th Street #510 New York NY 10001 212-627-9855 info@VisualAIDS.org ART. AIDS. ACTION. Your support makes change possible. 15

Last night Maria and I went browsing and carousing around charming downtown Ojai. We were hoping to catch a glimpse of Channing Tatum, who just moved here! No such luck. Bollocks. When we returned to the Inn, we found our beds turned down, with soft gentle music playing on the radio. That’s class. By the by, the Inn supports more than one hundred local charitable organizations. Maria and I met in Florida last year when I was speaking at the Broward House, an all-encompassing AIDS organization in Fort Lauderdale. We haven’t had much time to get to know one another, so this was my opportunity to delve right in. This afternoon Maria swam in the Olympic-sized pool and I took a Yoga class at the Fitness Center. A young attractive instructor volunteered to carry my gear back to the room for me. When we arrived, Maria wasn’t there. I invited him in and we chatted. He was very sweet, but more on that for another column. This evening, Maria and I order room service and we chow-down here on the oversized balcony of our luscious room. The grandiose view before us is impossible to describe, kids. It’s not quite sundown and we face lush mountains dotted with green foliage and large flourishing trees—so serene. Ruby Comer: I’m so exhilarated that with your busy schedule we got to do this retreat! You are certainly a person I look up to, Maria. Whom do you consider a hero in the epidemic? Maria Mejia: Oh...Ruby. Thank you.

[She looks off momentarily.] OMG, I have many heroes! [Maria rapidly rattles names.] Larry Kramer, Peter Staley [A&U, July 2015], Phill Wilson [A&U, February 2014], Dawn Averitt [founder of The Well Project], Ryan White—he’s my angel, Dab Garner, Hydeia Broadbent, Josh Robbins, Mondo Guerra [A&U, January 2013], Jack Mackenroth [A&U, November 2010], Mary Fisher [A&U, February 2001], Elizabeth Glaser. I love all my fellow activists! [She smiles…] I’m curious—whatever happened to your first boyfriend from whom you contracted HIV? He died of AIDS. What an awakening that was for a young teen—Zowee! When did you first hear about the epidemic? A&U • NOVEMBER 2015

Ruby illustration by Davidd Batalon; photo courtesy M. Mejia

ight here, right now, let me just heave out a sigh: Ahhhhh….. Good. Feel better. The angst of the Big City of L.A. is behind me! I’m in Ojai (pronounced OH-hi), but I call it, “Omnipotent Ojai.” It’s a petite California town nestled in the Topatopa Mountains of Ventura County, not far from Santa Barbara. I’m cuddled-up here at the Ojai Valley Inn & Spa, on a women’s retreat with my Florida friend, Maria Mejia. I could write chapters about Maria. But let’s just say that this feisty broad is a head-on activist. Infected with HIV at sixteen (it was her first sexual experience with a boy), she has devoted her life to the community. She’s Global Ambassador of The Well Project, an interactive organization dedicated to supporting HIV-positive women, and she speaks around the planet about HIV prevention and treatment. Maria, forty-two, currently lives in Southern Florida with her wife, Lisa, and their baby Yorkie, Peanut. Last year, Maria co-authored the book, From A Warrior’s Passion and Pain, an account of her twenty-five year battle with HIV. She vlogs and blogs, volunteers for the Red Cross, is an HIV educator for Jackson Memorial Hospital, a co-chair for Women and Minorities Outreach for Dab the AIDS Bear Project, and a member of Janssen Pharmaceuticals digital advisory board. This dynamo has been featured in many campaigns, and she’s appeared in magazines, on billboards and television. Maria has spoken at conventions, including the CDC’s campaign, “Let’s Stop HIV Together,” The Stigma Project, and the Office of Women’s Health’s National Women and Girls HIV/AIDS Awareness Day (NWGHAAD). Ms. Mejia is in the early stages of founding a nonprofit in her native country of Colombia, as well. Upon our arrival yesterday at the resort, on the bedroom bureau was a welcome note, along with milk and cookies. Yum.

MARIA MEJIA

I try not to complain. I come from an era where we were dying. I deal with daily fatigue and my immune system is always hanging on a thread no matter how long I’ve been undetectable. I take Truvada and Tivicay daily.

Maria with Myron S. Cohen, MD, Associate Vice Chancellor for Global Health at UNC, at the 2012 IAPAC Conference

I recall his coming out as if it were yesterday, Maria. I knew about [the deaths of] Liberace, Rock Hudson, and Freddy Mercury. I never thought it would happen to me, Ruby. In my mind, this was a gay man’s disease, for prostitutes, IV drug users, hemophiliacs, and for people who received blood transfusions. [I seriously gaze into her mesmerizing, dark exotic eyes.] How can we better reach out to the communities who have the highest rate of infection? I don’t only focus on the LGBT or Latino communities. I focus on Humans, as this is a condition that affects us all. I have a gift to be able to reach all cultures, races, sexual identities, religious people, and atheists. I educate them and give them the information. Once I tell my life story, they usually listen. Yesterday while we were eating frozen yogurt at Bliss….I still can’t believe that they had one flavor sweetened with stevia. I was in heaven. It’s about time. They’re

Happy that you take care of yourself, Sister. What truly revs you, darling? Well...the USA has 50,000 new infections every year—and this does not need to happen. HIV is not a death sentence anymore, but it is a…life…sentence. I will continue speaking my story all over the world. I will continue working for women

trendsetters. I hope other yogurt places take heed, as usually most popular places are loaded with sugar and artificial crap. Anyhow, moving on. You were telling me about the abuse and trauma in your childhood. How did you come through that? Well, it was not easy! Forgiveness was very important. I forgave everyone who hurt me, including myself. I worked on my self-esteem and became the caregiver of my grandparents after my HIV diagnosis in 1991. This taught me that I was someone and not the useless whore I was told I was going to be as a child. [I shake my head in disgust.] Ojai Valley Inn & Spa I also worked on my spirituality. If a person wants to change, they can. I never want to be and girls globally through The Well viewed as a victim. I…am…a…survivor. Project. I will continue helping those that Applause, applause. Tell me again how long you lived on the streets? From the age of thirteen until I was seventeen-and-a-half. It was very traumatic, Ruby. I talk about this in my book. I survived the streets. [She cracks a half-smile.] I learned to survive in any circumstance.... I admire your strength, Maria. What’s currently your challenge in living with HIV?

feel their life is over. And most importantly [she pauses, stands up, and announces to the silent hills] I will continue to save lives! Follow Maria’s blog and find other information at www.thewellproject.org, and pick up a copy of Maria’s book, From a Warrior’s Passion and Pain from Amazon.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. A&U • NOVEMBER 2015

conference photo by Sean Black; hotel photo courtesy Ojai Valley Inn & Spa

I believe it was 1986. I remember seeing images of Michael Jackson and Elton John with Ryan White. I remember seeing on TV emaciated gay white men in beds dying. It was then called GRID. Then there was Kimberly Bergalis, who said she got it from her dentist. Several years later I was infected, which was 1989 and then I was diagnosed in 1991 on April 18 at the age of eighteen. Magic Johnson came out in October of that year.

Do you boost your immune system in alternative ways? My mother owns a health food store and it’s part of our culture to combine traditional with alternative. I take vitamin IV infusions. I also take CoQ10, selenium, milk thistle, fiber, vitamin C, B 12, vitamin D, probiotics, and NAC [N-acetyl cysteine]. I juice and eat very healthy! I also drink a lot of water daily. I exercise and meditate, too.

Listen Closely when your body talks, you need to answer

illustration by Timothy J. Haines

t’s September 18, 2015, about 2 a.m. and I am tired as hell. When this day started, I never thought it would end with me sitting here in a hospital bed. Waiting for results after a gambit of tests have been run. Blood tests, urine tests, and the unfortunate prostate check that is not as fun as the American Pie movies make it out to be. Although nervous because I am not sure what is going on, I can’t help but think about how this could’ve been avoided. How. if I would’ve taken the time out of my day to check on this issue when it first occurred, I may have caught whatever is going on. I then realized that this problem is part of a larger problem I witness occur in black families every day, and that it was time for me to address it. Call it a myth, a theory, or an unspoken truth, but when it comes to African Americans and checking on our health, we often push it to the limits of physical manifestation. Meaning, we let a little pain become a small pain, and then don’t react on it until it becomes a major pain. For myself, I witnessed this very thing happen with both of my parents this year. In January, my mother had two brain aneurysms. The problem was she had been having symptoms for an entire year but just passed them off as old age. My father had open heart surgery in March. Doctor tells us he probably tore his heart valve almost eight months prior and was just living in pain. Now you have me, sitting here in this room as I’ve pushed off the pain for ten days until I had to do something about it. What is it that keeps us as African Americans from going to the doctor? What is it that keeps us from taking care of pain, or being willing to push off illness until it is damn near life-threatening? This type of thinking and family pathology is something that I witness on a regular basis when dealing with HIV prevention. Many of my black clients who come in for testing, push this inevitable truth off until they physically get sick or can actually start to see changes due to the virus. Rather than getting tested after the initial window period, I have had people who have waited months, or years to get tested subconNOVEMBER 2015 • A&U

sciously knowing they are HIV-positive. As African Americans, we are predisposed to many illnesses and conditions simply because of who we are and where we live. High blood pressure, diabetes, heart disease, and cancer to name a few affect us at much higher rates than other races. When you add to that the fact that the socioeconomic status of many people within our community only compound these health conditions, you get a perfect storm of health issues that never leave certain neighborhoods and areas. For instance, a person living in the “projects” or “underdeveloped area” will walk past Chinese food stores, unhealthy fast food places, and liquor stores before ever

getting to a place that may have healthier foods. These situations continue the family history of poor medical care and added complications to our health. Now this in no way is to make light of the fact that there are barriers to healthcare for many of the marginalized groups. Poor health insurance or lack of insurance plays a major factor in the way African Americans interact with medical providers. Most of us fear the bill before we ever get any treatment. That fear alone allows us to stave off pain until there is no other choice but to go seek treatment. Add to that the lack of cultural competency in many clinics and Emergency Rooms and you create this culture of passeddown traditions of poor healthcare in the black community. So if nothing else, this is a call to action to the black community. If you are sexually active you should be getting tested regularly for HIV. Regularly means three to four times a year. You should also be getting full panels done regularly if you are having unprotected sex to check for any STIs you may have contracted. Furthermore, if you are having other issues going on you need to listen to your body. Your body is sending you signals all the time that something is wrong and waiting only makes that problem worse. Fear of a bad diagnosis can no longer outweigh the danger of living with something that may be killing you. The value of a hospital bill can be worth more than the value of your life and staying healthy. So as for me, it is finally 4 a.m. and I am being released. No kidney infection. No swollen colon or bladder. A simple lower abdomen strain. So yes I am $30.00 poorer, and six hours past my bedtime, but none of that compares to having the peace of mind that comes from knowing that I am okay. George M. Johnson is an HIV advocate who works for Us Helping Us, People into Living located in Washington, D.C. He has written for Pride.com, Musedmagonline.com, Blavity.com, Rolereboot.org, and Ebony.com. Follow him on Twitter @IamGMJohnson.

Bringing hearts together since 1998

P zMatch.c m 20

A&U â&#x20AC;˘ OCTOBER 2015

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 jsmithco98@hotmail.com.

Hey Justin— Does PrEP give you a false sense of security that you can engage in more risky behavior, such as bare sex for instance? It has to a certain degree, but I’d say no more or less concern than before I started taking PrEP. Before PrEP, I had very few sex partners and I knew my HIV status and my partners knew their HIV status. We were all negative. We would not use condoms because we were in our minds safe and being responsible by getting tested regularly and limiting the number of guys we had sex with regularly. My doctor asked why I was getting tested every three months (the window of infection) for HIV. I explained that I had a couple of sex partners that I was having bare sex with and wanted to be sure I knew my status at all times. I personally feel nothing with a condom on and cannot maintain erection to completion. It’s very frustrating and that’s the real reason I chose bare sex with limited partners. After talking to one of my sex partners who just went on PrEP and explained it to me, I went back to my doctor and brought PrEP up in conversation. He immediately thought I was a good candidate for it and should go on it considering my confessed sexual activity.

NOVEMBER 2015 • A&U

My doctor surprised me by saying that undetectable HIV-positive men were likely a better sex partner because they were on meds to block it and I was on PrEP to block HIV, too, so the likelihood of contracting it was very low, versus having sex with a guy who thinks he’s HIV-negative but is in fact positive and highly infectious. Since that talk, I’m less apprehensive about engaging in sex with poz undetectable men, so I guess the answer would be yes. I do feel more at ease and probably have a false sense of security, but at least I’m proactive and taking PrEP to provide a barrier against HIV. I no longer am afraid to love someone who is HIV undetectable and no longer afraid to have sex with them. —The Chad Thank you for writing me. I do not believe that it does give you a false sense of security; whether or not you engage in risky behavior is based on whether you make that decision, PrEP or not. One of the concerns for researchers and activists is that PrEP will give people an excuse to engage in riskier sexual behaviors. According to Guest et al (2008), the overall sexual risk behavior did not increase during a PrEP trial. The number of sexual partners and rate of unprotected sex acts decreased across the twelvemonth period of study enrollment. The data also indicates that the HIV

prevention counseling associated with the trial was effective. Good for you for being tested and having open communication with your sexual partner and your doctor. This is a prime example how many of us should be talking to our sexual partner(s) and physicians. I agree with your doctor on how it might be easier to have a partner who is HIV-positive, but love is love and attraction is attraction—you can’t control that. But if you do get involved with someone who is HIV-positive and on medication it might help with adherence to PrEP as well. According to Ware et al (2012), if one partner is on PrEP and the other was also taking medication (ART or cotrimoxazole as prophylaxis against opportunistic infections), they might match their own dosing schedules to their spouse’s, as a way of promoting adherence (for both). ◊ References: Guest, G., Shattuck, D., Johnson, L., Akumatey, B., Clarke, E. E. K., Chen, P. L., & MacQueen, K. M. (2008). Changes in sexual risk behavior among participants in a PrEP HIV prevention trial. Sexually transmitted diseases 35(12), 1002-1008. Ware, N. C., Wyatt, M. A., Haberer, J. E., Baeten, et al. (2012). What’s love got to do with it? Explaining adherence to oral antiretroviral pre-exposure prophylaxis (PrEP) for HIV serodiscordant couples. Journal of acquired immune deficiency syndromes (1999), 59(5).

COMPLERA is a prescription medicine for adults who have never taken HIV-1 medicines before and who have no more than 100,000 copies/mL of virus in their blood. COMPLERA can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL) and whose healthcare provider determines that they meet certain other requirements. COMPLERA combines 3 medicines into 1 pill to be taken once a day with food. COMPLERA should not be used with other HIV-1 medicines.

Just the

one

for me

COMPLERA is a complete HIV-1 treatment that combines the medicines in TRUVADA + EDURANT in only 1 pill a day.*

Ask your healthcare provider if COMPLERA may be the one for you. *COMPLERA is a combination of the medicines in TRUVADA (emtricitabine and tenofovir disoproxil fumarate) and EDURANT (rilpivirine).

Pill shown is not actual size.

COMPLERA does not cure HIV-1 infection or AIDS.

To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. 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. It is not known if COMPLERA is safe and effective in children under 18 years old.

IMPORTANT SAFETY INFORMATION What is the most important information I should know about COMPLERA?

COMPLERA can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking COMPLERA, your hepatitis may suddenly get worse. Do not stop taking COMPLERA without first talking to your healthcare provider, as they will need to monitor your health. COMPLERA is not approved for the treatment of HBV.

Who should not take COMPLERA?

Do not take COMPLERA if you: • Take a medicine that contains: adefovir (Hepsera), lamivudine (Epivir-HBV), carbamazepine (Carbatrol, Equetro, Tegretol, TegretolXR, Teril, Epitol), oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek), rifampin (Rifater, Rifamate, Rimactane, Rifadin), rifapentine (Priftin), dexlansoprazole (Dexilant), esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), omeprazole (Prilosec, Zegerid), pantoprazole sodium (Protonix), rabeprazole (Aciphex), more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate, or the herbal supplement St. John’s wort. • Take any other medicines to treat HIV-1 infection, unless recommended by your healthcare provider.

What are the other possible side effects of COMPLERA?

Serious side effects of COMPLERA may also include: • Severe skin rash and allergic reactions. Call your doctor right away if you get a rash. Some rashes and allergic reactions may need to be treated in a hospital. Stop taking COMPLERA and get medical help right away if you get a rash with any of the following symptoms: severe allergic reactions causing a swollen face, lips, mouth, tongue or throat which may lead to difficulty swallowing or breathing; mouth sores or blisters on your body; inflamed eye (conjunctivitis); fever, dark urine or pain on the right side of the stomach-area (abdominal pain). • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood tests to check your kidneys before starting treatment with COMPLERA. If you have had kidney problems, or take other medicines that may cause kidney problems, your healthcare provider may also check your kidneys during treatment with COMPLERA.

Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: feeling sad or hopeless, feeling anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself. • Changes in liver enzymes: People who have had hepatitis B or C, or who have had changes in their liver function tests in the past may have an increased risk for liver problems while taking COMPLERA. Some people without prior liver disease may also be at risk. Your healthcare provider may do tests to check your liver enzymes before and during treatment with COMPLERA. • Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicines. • 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 COMPLERA. •

The most common side effects of COMPLERA include trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression. Other common side effects include vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles), and pain. Tell your healthcare provider if you have any side effects that bother you or do not go away.

What should I tell my healthcare provider before taking COMPLERA?

All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, mental health, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking COMPLERA without first talking with your healthcare provider. • If you take rifabutin (Mycobutin). Talk to your healthcare provider about the right amount of rilpivirine (Edurant) you should take. • If you take antacids. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA. • If you take stomach acid blockers. Take acid blockers at least 12 hours before or at least 4 hours after you take COMPLERA. Ask your healthcare provider if your acid blocker is okay to take, as some acid blockers should never be taken with COMPLERA. • If you are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking COMPLERA. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in COMPLERA can pass into breast milk, and it is not known if this can harm the baby. •

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 Brief Summary of full Prescribing Information with important warnings on the following pages.

Brief Summary of full Prescribing Information COMPLERA® (kom-PLEH-rah) (emtricitabine 200 mg, rilpivirine 25 mg, tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information. What is COMPLERA? • COMPLERA is a prescription medicine used as a complete HIV-1 treatment in one pill a day. COMPLERA is for adults who have never taken HIV-1 medicines before and who have no more than 100,000 copies/mL of virus in their blood (this is called ‘viral load’). Complera can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL) and whose healthcare provider determines that they meet certain other requirements. • COMPLERA is a complete HIV-1 medicine and should not be used with any other HIV-1 medicines. • COMPLERA should always be taken with food. A protein drink does not replace food. • COMPLERA does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. What is the most important information I should know about COMPLERA? COMPLERA can cause serious side effects, including: • Build-up of an acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take COMPLERA or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: – feel very weak or tired – have unusual (not normal) muscle pain – have trouble breathing – having stomach pain with nausea or vomiting – feel cold, especially in your arms and legs – feel dizzy or lightheaded – have a fast or irregular heartbeat • Severe liver problems. Severe liver problems can happen in people who take COMPLERA. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: – your skin or the white part of your eyes turns yellow (jaundice) – dark “tea-colored” urine – light-colored bowel movements (stools) – loss of appetite for several days or longer – nausea – stomach pain • You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time.

• Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take COMPLERA, your HBV may get worse (flare-up) if you stop taking COMPLERA. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. COMPLERA is not approved for the treatment of HBV, so you must discuss your HBV with your healthcare provider. – Do not run out of COMPLERA. Refill your prescription or talk to your healthcare provider before your COMPLERA is all gone. – Do not stop taking COMPLERA without first talking to your healthcare provider. – If you stop taking COMPLERA, your healthcare provider will need to check your health often and do blood tests regularly to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking COMPLERA. Who should not take COMPLERA? Do not take COMPLERA if you also take any of the following medicines: • Medicines used for seizures: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal); phenobarbital (Luminal); phenytoin (Dilantin, Dilantin-125, Phenytek) • Medicines used for tuberculosis: rifampin (Rifater, Rifamate, Rimactane, Rifadin); rifapentine (Priftin) • Certain medicines used to block stomach acid called proton pump inhibitors (PPIs): dexlansoprazole (Dexilant); esomeprazole (Nexium, Vimovo); lansoprazole (Prevacid); omeprazole (Prilosec, Zegerid); pantoprazole sodium (Protonix); rabeprazole (Aciphex) • Certain steroid medicines: More than 1 dose of dexamethasone or dexamethasone sodium phosphate • Certain herbal supplements: St. John’s wort • Certain hepatitis medicines: adefovir (Hepsera), lamivudine (Epivir-HBV) Do not take COMPLERA if you also take any other HIV-1 medicines, including: • Other medicines that contain emtricitabine or tenofovir (ATRIPLA, EMTRIVA, STRIBILD, TRUVADA, VIREAD) • Other medicines that contain lamivudine (Combivir, Epivir, Epzicom, Triumeq, Trizivir) • rilpivirine (Edurant), unless you are also taking rifabutin (Mycobutin) COMPLERA is not for use in people who are less than 18 years old. What are the possible side effects of COMPLERA? COMPLERA may cause the following serious side effects: • See “What is the most important information I should know about COMPLERA?” • Severe skin rash and allergic reactions. Skin rash is a common side effect of COMPLERA but it can also be serious. Call your doctor right away if you get a rash. In some cases, rash and allergic reaction may need to be treated in a hospital. Stop taking COMPLERA and call your doctor or get medical help right away if you get a rash with any of the following symptoms: – severe allergic reactions causing a swollen face, lips, mouth, tongue or throat, which may cause difficulty swallowing or breathing – mouth sores or blisters on your body – inflamed eye (conjunctivitis) – fever, dark urine or pain on the right side of the stomach-area (abdominal pain) • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking COMPLERA. If you have had kidney problems in the past or need to take another medicine that can cause kidney problems, your healthcare provider may need to do blood tests to check your kidneys during your treatment with COMPLERA.

• Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: – feeling sad or hopeless – feeling anxious or restless – have thoughts of hurting yourself (suicide) or have tried to hurt yourself • Change in liver enzymes. People with a history of hepatitis B or C virus infection or who have certain liver enzyme changes may have an increased risk of developing new or worsening liver problems during treatment with COMPLERA. Liver problems can also happen during treatment with COMPLERA in people without a history of liver disease. Your healthcare provider may need to do tests to check your liver enzymes before and during treatment with COMPLERA. • Bone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the main part of your body (trunk). Loss of fat from the legs, arms and face may also happen. The cause and long term health effect of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having any new symptoms after starting your HIV-1 medicine. The most common side effects of COMPLERA include: • Trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, depression Additional common side effects include: • Vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles), pain Tell your healthcare provider if you have any side effect that bothers you or that does not go away. • These are not all the possible side effects of COMPLERA. For more information, ask your healthcare provider. • Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. What should I tell my healthcare provider before taking COMPLERA? Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, mental health, bone, or liver problems, including hepatitis B or C infection. • If you are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn child. – There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk to your healthcare provider about how you can take part in this registry. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take COMPLERA. – You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. – Two of the medicines in COMPLERA can pass to your baby in your breast milk. It is not known if this could harm your baby. – Talk to your healthcare provider about the best way to feed your baby.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements: • COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works. • If you take certain medicines with COMPLERA, the amount of COMPLERA in your body may be too low and it may not work to help control your HIV-1 infection. The HIV-1 virus in your body may become resistant to COMPLERA or other HIV-1 medicines that are like it. • Be sure to tell your healthcare provider if you take any of the following medicines: – Rifabutin (Mycobutin), a medicine to treat some bacterial infections. Talk to your healthcare provider about the right amount of rilpivirine (Edurant) you should take. – Antacid medicines that contain aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA. – Certain medicines to block the acid in your stomach, including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine hydrochloride (Zantac). Take the acid blocker at least 12 hours before or at least 4 hours after you take COMPLERA. Some acid blocking medicines should never be taken with COMPLERA (see “Who should not take COMPLERA?” for a list of these medicines). – Medicines that can affect how your kidneys work, including acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex), and valganciclovir (Valcyte). – clarithromycin (Biaxin) – erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone) – fluconazole (Diflucan) – itraconazole (Sporanox) – ketoconazole (Nizoral) – methadone (Dolophine) – posaconazole (Noxafil) – telithromycin (Ketek) – voriconazole (Vfend) Know the medicines you take. Keep a list of all your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. Do not start any new medicines while you are taking COMPLERA without first talking with your healthcare provider. Keep COMPLERA and all medicines out of reach of children. This Brief Summary summarizes the most important information about COMPLERA. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about COMPLERA that is written for health professionals, or call 1-800-445-3235 or go to www.COMPLERA.com. Revised: May 2015

COMPLERA, the COMPLERA Logo, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, TRUVADA, VIREAD, and VISTIDE are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners.

creative

nonfiction

The Heaven of Our Eyes in memory of my 25 deaf gay friends who’ve died from AIDS-related complications

awake to find my dank room mottled with moss, my body covered with vines crawling and a moist dust creeping. My limbs are weak, but the sun cuts a sweet swath through the musty panes. I glance to the other side of our bed, finding the man I loved gone. No trace of him: has he truly left me for a hearing man, or for dead, or had I simply dreamed up every inch of him in the room of my eyes? I try to get up, ignoring the thinness of my ribcage. When I lift my head, my dizziness hurts. But I close my eyes and face the sun. The warmth soothes me. I stand up, shakily but slowly, and feel even more dizzy as I totter to the window. I close my eyes and lean for a breath’s rest against the moth-eaten drapes. Damn him, where is he now? My stomach gives thunderous rumbles. I open my eyes and catch the shock of my gnarly beard in the window’s reflective glint. My aching bones tell me that I must’ve slept a year, maybe more. I touch my face, my carved-out cheekbones. He can’t have abandoned me—no, not like this. Damn it, he was supposed to love me! I remember acutely the savage beauty he gave me, and how much more to him I’d given. I push open the window, and a rush of warm peppermint wafts in. I look below at the fetid moat, and to the rolling meadows beyond. Everything is a summery green, nothing like the drab and cold February when we first met, when we were desperate for a little color. In the distance I see a huge herd of naked men heading toward my castle. They are all on foot, carrying burlap knapsacks of food and blankets. My eyes are still unused to so much light, and the muscles around my eyes are already sore from squinting. But as the men get closer, I recognize some of them, the deaf men I always wanted to know and love ever since I began learning their language years ago. They stop signing with each other to gaze up into my weeping eyes: the morning sun rains down on my frail shoulders. Oh, where have they been, and for so long? And why had I been separated from them in the first place? I never got to learn their stories. Much too hungry to think of anything else, I fall back in the stark shadows and struggle my

by Raymond Luczak

way out of the bedroom. Each step down the winding stairs in the dark tower gives my bare soles shocks of wet iciness. In the blind flight down I recall ghosts of all these men I’d starved for from afar, falling in love with the way their faces and hands moved, feeding an unspent volume of hope in my search for a kindred mate in my naive days: how odd to see them again, and all naked as I’d secretly dreamed. At the bottom step, I find the huge wooden door bolted. Through a crack I see the men signing passionately to each other on how to smash open the door with a rotting log near the moat’s edge. I can see so brightly their pectorals shifting with each expansive gesture, their biceps flickering with each fingerspelled word, and their mouths pursing with each grunt as they centipede the log right through the door: the sweat on their skins shines their beauty, each one of them. I climb back up the stairs, only a few steps, and watch the sunshine splinter the lingering darkness. The door surrenders, and the end of the log is steadied onto the threshold. I watch the shadow of a man with rangy shoulders loom larger on the wall opposite the moat, and I remember the hearing man I loved. He once struck fear in my heart, yet this shadow is gentle, precarious as it crosses the sagging log. Then he steps off the log and peers into my darkness; the smattering of hair on his body glistens in the sunlight. He finds me, a beastly specter against the unforgiving walls, and his broad grin melts me. Tiptoeing around the splinters and rusted nails, he scoops me into his arms. I faint, a sheer miracle against the wall of his chest fur and steady arms. If this is heaven, I’d never want to die. *

Reawakening on the meadows what must be hours later, I discover my body enveloped in a forgotten aura. My bones are wrapped supple with muscle; my nails and beard, trimmed. Cleansed, I am fleshed out with food; yet a strange, thrilling aftertaste lingers in the back of my throat. I realize as I survey their sheepish glances that somehow I hadn’t merely imagined our abundant feast. They

pull me up to my feet. I’m hardly surprised by their familiarity with my body, nor mine with theirs: oh, what sweet crimes they commit with their hands, interpreting perfectly the grammar of my desires! Walking among them and looking deep into each deaf man’s eyes, I beg: translate me. Translate me into words best left unspoken on my tongue. Teach me so that I may comprehend all the body’s mysteries. Fill me with travels of countries I’ve never heard of, with my body its only passport. Behind them all, I see the men of whose legendary stories I’ve heard remnants a long time ago, and now I meet them in flesh. My eyes are so blinded by tears that I can’t see clearly, and my dry tongue thirsts for sweat. I am wanton with want, and their eyes penetrate every pore of my body. I could’ve been ash in their hands, yet they choose to salvage me, to revive. As I introduce myself with my name sign, I glance back at the castle where I had slept for a year: now in ruins, its shadow is already creeping closer to our feet as the sun arcs west. As the men sweep me onto their path home, we embrace and swap stories, as if nothing bad had ever happened. Feeling my voice freed through my hands lonesome no longer, I feel gloriously alive, talking and laughing without worrying whether I could speak or hear. Why hadn’t anyone told me how truly wonderful life could be? The further we move away from the castle, I see the opaque silhouette of the hearing man I once loved standing in the window of what used to be our one room up in the tower. He is alone, unable to convey with his hands the one year between us. Oh, how could anyone be so selfish as to stay silent in the language of touch just shouting? No longer his, I am forever theirs to touch, and all the heavens are mine to behold and share. Raymond Luczak is the author and editor of seventeen books, including How to Kill Poetry (Sibling Rivalry Press) and Mute (A Midsummer Night’s Press). His other titles include QDA: A Queer Disability Anthology (Squares & Rebels) and the award-winning novel Men with Their Hands (Queer Mojo). He is on-line at raymondluczak.com. [Editor’s note: “The Heaven of Our Eyes” was our Second Place selection for last month’s 2015 Christopher Hewitt Award in Creative Nonfiction.] A&U • NOVEMBER 2015

#DONTHIDE

homicide victims. “The truly alarming number of gay men killed due to intimate partner violence indicates a need to expand the national discourse around this form of abuse, to ensure that it includes gay men, bisexual people, transgender, and gender non-conforming people. This is a crisis that affects everyone,” stated Justin Shaw, Executive Director of the Kansas City Anti-Violence Project, in a 2014 interview for Between The Lines. In Dallas, Texas, our organization SAAVED, Inc., has partnered with a fantastic domestic violence organization called Recovery First Community Development Center (RFCDC) to help individuals who suffer from domestic violence. RFCDC is a social service agency whose primary focus is (but not limited to) individuals of low income. RFCDC was founded in 2001 by Cleo and Deborah Davis. After being released from prison and not having enough resources available to Mr. Davis, he had a vision to expand services to individuals being released from prison and his wife and co-founder Mrs. Davis was the driving force of bringing the vision to past. When I asked her, what do you want people to know about RFCDC? Mrs. Davis replied, “Besides there availability to service the community and education through life skills and purpose classes, provide community conferences on social issues,” she elaborated on “their passion to help others and to develop each person’s qualities.” RFCDC has developed a “Don’t Hide” campaign and Mrs. Davis said the campaign aims to promote and encourage victims and their neighbors to not keep that information of abuse to themselves, to put a safety plan together for escape, to expose the abuser, and to end the abuse. She encourages others to get involved by becoming an advocate who can help change the laws and to stand with the victims and protect their rights. If individuals

enter into their program they provide HIV testing in collaboration with SAAVED, Inc., and educate them on how they can become infected from their abuser and place them in the wellness clinic to obtain medical services that will educate them on “how to live with HIV/AIDS and to maintain a productive and healthy life.” She states that, in her opinion, “many victims stay in abusive relationships because of low self-esteem, fear and a lot of times they feel they are not worthy of anything more because of molestation and child abuse.” She wants victims to know that they must first overcome their fears and know there is a way out. Help is here and RFCDC is there for you. In closing, domestic violence is a major issue that does not need to be hidden. Therefore, “Don’t Hide.” Seek help, and expose your abuser and together we will win. For more information about #DONTHIDE and Recovery First CDC, log on to: www.recoveryfirstcdc.com. Wear Purple and End Domestic Violence! Tyeshia Alston is a native of Dallas, Texas, and an HIV/AIDS activist, who “will go anywhere where people will listen.” She has done everything from travel to D.C. to speak with legislators about better healthcare access and how the disease has impacted communities to serving on panels for NMAC and other organizations and bringing her message to talk shows. In 2005 at the age of twenty-five, Alston was diagnosed with HIV and she has been on a mission since 2006 to educate people (especially our youth) about HIV/ AIDS. Visit www.saaved.org to learn more about her community-based work. Also, if you have any questions or comments please feel free to email Ms. Alston at saaved2heal@gmail.com. A&U • NOVEMBER 2015

illustration by Timothy J. Haines

he thought of the cruelty that many women, children and sometimes men have to suffer when abused by the hands of someone they love truly disturbs me. I mean, the world we live in has enough cruelty to give to a person when they step outside of her or his home, and the one safe, stable and loving environment should be the one place they call home. Each day many women wear a mask and they hide behind their makeup. The abuse they endure in their home has not only overtaken them physically, but mentally and emotionally; they are broken and have nothing else to give. However, they put on their makeup and boldly wear their lipstick and if they are not in too much pain they stand tall and walk in their stilettos only to hide the fact that the one person that the world believes adores them is the one person who stayed up late beating them the night before. As they beg for mercy, they cover their face as they struggle to understand the true meaning of love, and, when it is over, they blame themselves for his mistake and forgivingly accepts his flowers and his apologies full of blame when he says “I’m sorry, you made me do it.” October was Domestic Violence Awareness Month. According to the National Coalition Against Domestic Violence, one in four women in the United States will experience domestic violence in their lifetime. Women living with HIV are vulnerable to violence due to their serostatus. There are many reasons why they stay in abusive relationships. Some fear their status will be disclosed if they seek help and many victims living with HIV/AIDS may believe that their only hope for a relationship is to stay with their current partner. Not to be forgotten, members of the LGBTQ community are also drastically suffering from intimate partner violence (IPV) and this should be told around the globe because everyone deserves to be loved and treated with respect. A report by the Anti-Violence Project, states that in 2013, seventy-six percent of all reported IPV homicide victims were gay men, a significant increase from the year before when gay men comprised forty-eight percent of all reported IPV

let’s end domestic violence no matter the serostatus

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Playing Dress Up crucifixes, crosses & little things i’ve lost along the way

like to dress up for sex. The 70’s is my favorite era; so I am wearing a wellworn baseball cap, high white cotton socks with three colored stripes (green to match the hat), and a pair of red Adidas tennis shoes. I also have on a clean white jock strap. I used to wear a puka shell necklace like the “surfer boys” in the grainy vintage pornos that I am so fond of, but it’s kind of hard to find puka shells these days—plus they have not fared so well as far as “trendy modern accessories.” “No self-respecting gay man would be caught dead in a puka shell necklace.” So instead, I wear a simple silver Tiffany chain with a small heart pendant from their Paloma Picasso collection. It’s simple and feminine (but not too feminine), and flashy (but not too flashy). I once wore a lovely little crucifix from the same collection, but I lost it somewhere a while ago. That was a metaphor. I mean, I did actually have that particular Tiffany necklace (the crucifix), so I guess it is both the literal truth AND a metaphor, but there is no word for that. The last few months I have been walking through the universe in a pyre of crimson flames: I was burning alive. I know you can’t tell because of how stylishly I do my hair, but a hundred million years ago (technically about fourteen years ago) I was a homeless crystal meth addict. I was living on skid row, addicted to a rabid all-consuming drug, and #DyingOfAIDS. And then I found God…He was sitting in the back of a movie theater eating a big bag of buttery popcorn; and he decided to introduce himself. I have been “clean and sober” ever since (give or take a few details)… But I relapsed in the middle of the last two months and I’m not entirely sure why—that’s a lie—I know exactly why. Because being a goody two-shoes all these years has gained me exactly squat! This is me being a brat. This is me singing “woe is me!” This is me playing the role of the lovely lady martyr. Cue sad orchestra music. The real reason I lost myself in the fire—the real reason I thrust myself recklessly into the flame like Joan of Arc, or The Legend of Billie Jean (love that movie!),

is that I’ve just been really sad, really frustrated, and unbelievably lonely. All my Christian “picket fence,” “safe sex,” “one partner till marriage” dogma and ideology hasn’t paid off. I should have a husband by now! I should have someone to love me by now! I should have a house on the hill with three little adopted Indonesian children by now! But I don’t. And something in my mind said, “Fine! If I don’t get what I want being good, then let’s be bad for a while.” Very very bad…. So I am lying on my stomach in my sexy-sex outfit of white socks and white jocks, with my butt rocking proudly from side to side—as we bottoms tend to do. And my gentleman caller is lying beside me on his back (you know why.) And we have just finished… And we are discussing God, and disclosure, and being authentic inside and outside of the bedroom; and what it means to be fully human and fully sexual and perfectly flawed. And his accent is like high tea in the mid afternoon. And I am saying something about what it means to have a “public persona,” and how that can be dangerous when it comes to self-exploration and managing HIV and still fumblingly trying to find love. And he says something about us only being responsible to ourselves and our own journeys; and that what people take from being a witness to that journey is theirs and theirs alone, and should not be part of your concern. “Because we are no more perfect than anyone else.” And I am smiling softly in that after-sex glow, because these are my favorite kinds of conversations. And I realize that because we are both HIV-positive, it is all so easy. You know, all of it. The sex is off the charts—mind blowing-curl your toes-roll your eyes to the back of your head

good: verbal, aggressive, tender when it needs to be…and full of laughter. And no fear. This is our second time sharing time in the sheets time. And we are not really dating; it’s more of a “Netflix and chill” situation… but because we share the same status there is absolutely zero tension about transmission, and safety, and risk. And I must admit, I really like that. So it’s time for him to leave, because he has an important appointment in a couple of hours. And so he cleans up, puts on his britches, and snaps his pristine white collar back in place. And because I’m having casual sex again for the first time in a long time, I am left wondering if I should get a tattoo of a Poz sign on my arm. So that it can always be this easy. Just a simple cross in red and black ink, to replace the Tiffany one I lost not so long ago. I wonder how many people will interpret it as a cross and how many will read it as a plus sign. How many will define me as HIV-positive, and how many will mark me as Christian. Obviously I am both (or some muddled bit floating in between…) but there is no word for that. There needs to be a word for that. 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. A&U • NOVEMBER 2015

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In Memoriam... PHOTOGRAPHER LESTER BLUM & CREATOR AND ARTISTIC DIRECTOR OF “I STILL REMEMBER” VLADIMIR RIOS TALK ABOUT THEIR NEW SHOW OPENING WORLD AIDS DAY by Alina Oswald

hen all is said and done, memories are often all that we’re left with. A granny’s voice, a mother’s face, a best friend’s smile remain forever imprinted in our minds. The AIDS pandemic has decimated communities, replacing hope with despair, light with blackness, leaving behind a deep and dark void, while taking away loved ones, too often, too soon. But that doesn’t mean that those lost to the pandemic are lost from our lives. We still remember them, and keep their memory alive. “[We should still remember] because that’s the only way that we’re going to keep people [who passed away] alive,” actor and artistic director Vladimir Rios says, as I sit next to him and New York City photographer Lester Blum, sipping on tea, in a cozy coffee shop in Chelsea. “I lost my grandmother,” Rios continues. “She was an absolutely great human being, and, to me, [losing] her was a big deal. I was quite young when she died….I noticed that by keeping her memory alive, she never really died. She’s always with me.” The idea behind their most recent photo collaboration, “I Still Remember,” is multi-fold—the desire of keeping the memory of loved ones alive, the desire of educating younger generations about the history of HIV, and, well, the result of pure chance. Vladimir Rios and Lester Blum met a decade or so ago on the set of a photo shoot—Rios was the model, and Blum, the photographer. They became very good friends, and then started collaborating on other photography projects. And they’ve been doing that ever since. The first project, “Despair,” is a body of work capturing an individual’s journey from the darkness of despair and back into the light, because (as mentioned on Lester Blum’s website) “[u] ntil our own darkness is understood, we can not even begin to try to understand the light.” Mentioning “Despair,” the photographer

Just Another Night, 2015, Ultrachrome archival photo print, 18 by 12 inches. From all walks of life—working the streets. explains that it was the first collaboration, which was entirely created by Rios as the artistic director and model. The lead image of the series has been exhibited in four photography shows, and won several photography awards. Another more recent show, “Warrior of Hope,” offers a visual representation of a fictional, but much-needed hero personifying “the concept of ‘hope’ for a better future, in a constant battle against inequality, injustice, and disease.” Blum explains, “‘Warrior of Hope’ was already scheduled for exhibit at the Pride A&U • NOVEMBER 2015

A&U Gallery

Rios & Lester, 2015, Ultrachrome archival photo print, 15 by 10 inches. “Warrior of Hope” Opening Reception at the Pride Center of Staten Island

NOVEMBER 2015 • A&U

Center of Staten Island, this fall. In discussion with the curator, he indicated that they were looking for a powerful exhibit, which could be shown in Staten Island in honor of World AIDS Day. The following week, we presented the concept for ‘I Still Remember,’ which they immediately fell in love with, and believed it was the perfect project to honor World AIDS Day.” Blum points out that both “Warrior of Hope” and “I Still Remember” are visual narratives. One is based on fantasy, while

The photography for “I Still Remember” actually started in the fall of last year, with another project called “Encounters.” It just happened that some of the images from “Encounters,” showing how the two characters met, ended up part of “I Still Remember.” The show touches on every facet of life as it was, in turn, touched, directly or not, by HIV during the eighties and early nineties. Every image included in the show visually and vividly captures a facet of that reality. Each character brings his or her own uniqueness and experiences to the story, in turn, enhancing the reality of the story. Rios, himself, brings his own experience to the show. The Puerto Rico native worked in New York City as a social worker for many years, helping, among others, people living with HIV. About ten years ago Rios moved on to pursue other interests in life, but his experience as a social worker, especially related to HIV and AIDS, has influenced his very own view and interpretation of “I Still Remember.” “We didn’t want to hold back anything,”

Remembrance 1, 2015, Ultrachrome archival photo print, 18 by 12 inches. Friends gather on Fire Island to celebrate and remember a life lost to the disease. the other, on reality. In that sense, “I Still Remember” serves as a remembrance, but also as an educational tool for the younger generations. “People who are ill always need hope, so those presented in ‘I Still Remember’ need the hope as personified by the Warrior,” Blum comments, drawing parallels between the two shows. Conceptualized by Rios and photographed by Blum, “I Still Remember” offers a striking, riveting, a brutally honest and powerful visual narrative of a universal story of love and loss at the height of the AIDS pandemic. It tells the story of two men who meet, and fall in love. One of them, played by Rios, becomes sick. The other one, the main character of the story played by adult entertainer Scott Reynolds, lives to tell the story as he (still) remembers it. “‘I Still Remember’ captures vignettes of life—how they met, while they were together, and after one dies of complications from HIV/AIDS,” Blum says.

Rios explains, talking about the importance of expressing the reality of those years, as shocking as it might be. “[We didn’t want to] soften the visual imagery that we would present to the viewer. We wanted to show the reality of that era, with real subject matter.” He starts flipping through several sample images that Blum had brought along. Both the photographer and artistic director comment on each of the images, finishing each other’s thoughts, making sure that they cover all the details, their voices filled with passion…and also pride. There is the drug scene photographed in the Meatpacking District featuring a few real drag queens, members of the Imperial Court of New York. There is also the sex club segment “made possible by the generosity and project support of Hunteur Vreeland of HandsomeNYC.com,” Blum adds. There’s a scene of an actual doctor actually drawing blood from Rios’ arm. Years ago, Blum was looking for a new family doctor. Somebody suggested Dr. Arthur Englard, who’s also an allergist. As HIV started to spread, the doctor also specialized in HIV. He agreed to be photographed A&U • NOVEMBER 2015

A&U Gallery for the “I Still Remember” show. A poignant image portrays Rios’ character on the beach, reflecting on his diagnosis. Some of the most striking images come at the end of “I Still Remember.” They capture the memorial of Rios’ character, showing the surviving partner surrounding by friends, holding his lover’s ashes. The box he holds in his hands contains actual ashes, those of one of Blum’s friends, Louis F. Petronio, who died of AIDS-related causes in the early nineties. “Everything that we have done is as real as it can be,” Rios reiterates. “We [also shot] a series in which the friends [of the main character] are disappearing, one by one. This is symbolic, because not only he lost his boyfriend, but he did lose his friends, [too]. So, there’s a very powerful sequence [of images] that we captured on the beach, with five friends walking on the beach, and then there’re four, and then three, two, and then he’s alone. Because [in those days, people kept dying] of AIDS, and kept disappearing.” There are several images showing individuals laughing and having a good time. That’s because Rios and Blum wanted to project not only the sad moments, but also the lighter ones. “They did have fun,” Rios says. “They did have friends. They did enjoy life. That’s why the memories are so important, because no matter the cause of their death, they were wonderful people. They were great people to be remembered. Whether you’re in approval of their lifestyle or [of ] who they were or what they did, it doesn’t change the fact that they were in our lives. They were people who were loved. So why wouldn’t we remember someone who was a good human being, whether they did drugs or were sick or had a wild sexual life. Why not remember these people and [cherish] the good memories that they gave [us].” To start working on “I Still Remember,” Blum and Rios put out several postings, looking for individuals who’d want to participate and be photographed for the show. Photo shoots took place in Manhattan, Staten Island, and also on Fire Island. A final photo shoot capturing the bedroom scene shows Rios’ character being sick, in bed, succumbing to the disease. In addition, the show also captures segments focusing on controversial religious beliefs as well as family rejection NOVEMBER 2015 • A&U

associated to HIV and AIDS. “I Still Remember” is not only an eye-opening, powerful work of art, but also an educational tool. “The [Pride Center of Staten Island] saw it as an educational tool for the new generation,” Rios explains. “It was the best compliment that they gave us.” Discussing the educational aspect of “I Still Remember,” Blum adds that the show “is a reminder for the existing generations that either lived through [the height of the epidemic] or came right after, [as well as] an educational tool for [today’s young generation]. Right now there’s so much hype on things like PrEP,” he says. “People don’t know [enough] about it, yet they’re taking it.” He and Rios point out the socio-economical divide that PrEP might add to the already complicated, yet still unsolved equation of HIV and AIDS. That’s because, while many health insurance plans cover PrEP, others don’t. And then, being on

this…they need to know this.” “I Still Remember” opens on December 1, World AIDS Day, at the Pride Center of Staten Island, and will run, tentatively, through mid-January. There will be thirty to thirty-five images in the show. There are also possible plans for the show to travel nationally and internationally. “I think it’s important for people to remember their loved ones, to keep them alive in [their] hearts and minds. I want people to walk away [from the show] knowing that. It’s the most important thing to me, other than [“I Still Remember”] being an educational piece of [artwork],” Rios concludes. “I would like a two-fold experience for people,” Blum adds. “One is to not only remember the individual, but also to remember what happened to our society as a whole during this timeframe. And somehow [that] memory to make a difference today, to encourage more

Direct Hit, 2015, Ultrachrome archival photo print, 18 by 12 PrEP or not could become inches. Helping the dealer shoot up with a heroin shot in the an issue of class and social neck while a stranger stares and passes by. status, of who can afford it and who cannot. Blum adds that today’s youth should research, more safety measures, because just know what those that came before them went like I said with the Warrior [in “Warrior of through—how the epidemic affected not only Hope”], the battle is not over. So much more their health, but also their entire lives, on so still needs to be done, and education is a big many levels. “I know people who’ve had the facet. I want people to understand that.” virus for thirty years now,” he says. “Their lives were affected in many, many ways. [Even Learn more about “I Still Remember,” “Warrior right now] the disease is pretty much conof Hope,” and Lester Blum’s photography work trolled for a lot of people, and yet, it’s much at www.lesterblumphotography.com. more than just a disease. And I think that the younger generation that didn’t live through Alina Oswald is Arts Editor of A&U.

RIBBONS intoBOWS

A&U’s 14th Annual Holiday Gift Guide

The red ribbons always become a little more satiny during the season of giving but no less saturated with AIDS awareness. What better way to contribute to the fight than to donate to a local ASO or wrap a fundraising gift, whose purchase help vital services for individuals living with HIV/AIDS, for a loved one and top it with a red-ribbon bow? Here are some gifts that caught our eye.

amfAR

is dedicated to ending the global AIDS epidemic through innovative research. Focusing on emerging areas of scientific promise, amfAR plays a catalytic role in accelerating the pace of HIV/AIDS research and achieving real breakthroughs. amfAR-funded research has increased the world’s understanding of HIV and has helped lay the groundwork for major advances in the study and treatment of HIV/AIDS. Since it’s founding in 1985, amfAR has invested more than $388 million in its programs and has awarded more than 3,300 grants to research teams worldwide. When it comes to gifts, amfAR maintains its high standards. Whether you’re heading to the beach or lounging by the pool this summer, showing your support for amfAR has never looked so good with the Jean Paul Gaultier Summer Tote Bag. In collaboration with renowned fashion designer and long-time supporter Jean Paul Gaultier, amfAR has produced a special edition tote bag to raise AIDS awareness and help fund its search for a cure

A&U • NOVEMBER 2015

(modeled by Heidi Klum in the picture). Tell Me More: The stylish tote is made of durable canvas and contains interior pockets for your sunglasses and phone. 100% of the purchase price benefits amfAR. Make a fashion statement on social media! Post a photo of your new purchase on Twitter, Facebook, and Instagram, and don’t forget to tag @amfAR using the hashtag #amfARTote. How Much: $40. Designed by British visual artist Shantell Martin exclusively for amfAR’s Countdown to a Cure for AIDS initiative, this 100-percent cotton towel features Martin’s signature swirls and black-andwhite illustrations with the emblazoned shout-out “Be Epic, Cure AIDS.” Actor Jay Ellis, and model Andreja Pejic launched the eye-catching beach or spa must-have over the summer. Although summer is over AIDS isn’t. Why not consider giving this all-purpose, all-season fashion piece useful for a winter break beach get away, a spa day or simply a long soak in the tub? Tell Me More: This holiday season, actor Gilles Marini [A&U, October, 2015], who along with Jay Ellis has ridden in Kiehl’s LifeRide and other events to support amfAR, has stepped forward to model the comfy towel. When you make a purchase from amfAR, you’re contributing to the life-saving AIDS research that is helping them pave the way to an AIDS-free generation. How to Purchase or Place Your Order: The towel is being sold exclusively at Scoop NYC locations as well as on amfAR’s on-line store at shop.amfar.org.

photo of Gilles Marini by Sean Black

Photo of Gilles Marini by Sean Black

NOVEMBER 2015 • A&U

Broadway Cares/Equity Fights AIDS

arbra Streisand joins the “cast” of the Broadway Legends Holiday Ornament series from Broadway Cares/Equity Fights AIDS. As Fanny Brice from Funny Girl, dressed in her instantly recognizable red, white and blue sailor costume, the only singer to have number-one albums across the past six decades of her career is in good company—Julie Andrews, Carol Channing, Angela Lansbury, Liza Minnelli, Bernadette Peters, Chita Rivera and Gwen Verdon have all been celebrated as the treasures they are. Tell Me More: The Original Christopher Radko Holiday Ornament, designed exclusively for Broadway Cares by artist Glen Hanson, stands six inches-tall. How Much: $60. Other ornaments from the series that are still available in limited quantities include Liza in The Act, Julie in My Fair Lady and Gwen in Sweet Charity. Check out the many other stunning items in the organization’s “A Catalog of Giving” for 2015–2016. Proceeds will help Broadway Cares to continue its mission of raising funds and making annual grants to more than 450 AIDS and family service organizations in all fifty states. With the support of the theater community, the organization has raised more than $285 million for essential services for people with AIDS and other critical illnesses across the United States since 1988. Broadway Cares/Equity Fights AIDS is the major supporter of the 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. How to Place Your Order: Log on to broadwaycares.org.

M•A•C AIDS Fund

AIDS

awareness can be on everyone’s lips. That idea is literalized by M•A•C VIVA GLAM from M•A•C Cosmetics. All proceeds from the lip products go to the M·A·C AIDS Fund (MAF), whose mission is to support everyone—and they mean everyone—affected by AIDS, in particular helping those who are underserved and at highest risk. MAF accomplishes its objectives by providing funds to innovative programs that reach the most marginalized. Grantmaking focuses on three areas— treatment (prevention of mother-to-child transmission, retention in care, treatment access); basic needs (food and nutrition, housing, poverty-based direct services); and prevention (harm reduction, behavior-based prevention, bio-medical prevention efforts). MAF helps get the word out about its products by tapping style icons like 2015 spokesperson Miley Cyrus. In 2016, Miley will pass the torch to Ariana Grande. Enchanted Eve/Viva Glamorous is a lip kit featuring the VIVA GLAM Miley Cyrus hot pink Lipstick and matching pearl shimmer Lipglass, complete with a red-hued clutch. Tell Me More: The Lipstick boasts a cream finish; the Lipglass provides a glass-like shine as it conditions and smoothes lips. How Much: $31 Enchanted Eve Lip Palette/VIVA GLAM includes three of the company’s most iconic VIVA GLAM shades in one compact—intense blue-red, shimmery pink-beige and pearlized pink (1.2 g/0.04 US oz each). Tell Me More: Packaged in VIVA GLAM red-hued palette, the product offers a variety of finishes, matte, semi-matte, and semi-gloss. How Much: $25.00. How to Purchase: Log on to: www.maccosmetics.com or find the VIVA GLAM line in M•A•C Cosmetics shops and other major retailers. For more information, log on to: www.macaidsfund.org.

A&U • NOVEMBER 2015

God’s Love We Deliver

od’s Love We Deliver recently celebrated its thirtieth anniversary, a testament to the strength of its much-needed services. With the help of staff, volunteers, and supporters, the New York City-based nonprofit provides free-of-charge nutritional services to clients living with HIV/AIDS, cancer, Alzheimer’s disease, multiple sclerosis, and other life-altering illnesses. Its food delivery service provides nutritious, individually tailored and freshly prepared meals—5,400 daily—across the New York City metropolitan area (including Hudson County and Newark, New Jersey). Keep its “no waiting list” a reality! Here’s a peek inside its 2015 “Gifts from the Heart” on-line catalogue. With sparkle and style, the Joan Rivers Forever in Our Memory Bee Pin pays tribute to one of God’s Love We Deliver’s steadfast supporters and board members. Part of the Joan Rivers Classics Collection, its elegant anatomy is abuzz with crystals and honeyed with a single, simulated pearl in its center. Tell Me More: Standard pin stem and catch; measures approximately 1 1/4-inch long and 2-inches wide; comes with box, pouch, romance card. Available in goldtone and silvertone. How Much: $59.50. Baked to delicious perfection in the newly opened Joan Rivers Bakery, part of God’s Love We Deliver’s stunning new digs, Chuck’s Famous Brownies have become a mouthwatering tradition thanks to twenty-year veteran “Chuck the Baker.” The brownies are a favorite among the array of desserts sent out to clients. Tell Me More: Brownies contain no preservatives (so enjoy upon delivery); will keep frozen for up to three months. How Much: $19.00 (box of 4); $28.00 (box of 8); $40.00 (box of 12); $75.00 (box of 24). The Holiday Tribute Cards feature delight designs, including 58th Street and Sutton Place, NYC (featuring the work of photographer Scott Frances); Happy Holidays; Holidays at Rockefeller Center; “Varoom!” (courtesy of the Roy Lichtenstein Foundation); Happy New Year 2016; and Art Glazer’s Art (featuring a volunteer delivering a meal to a client). How Much: Submit your mailing list and, for a minimum of $15 per name, God’s Love We Deliver will address, stamp and mail tribute cards to your friends and loved ones with your return address on the envelope. Each card will be personalized with your name or logo and following message: “This holiday season, [your name/ logo] made a generous donation in your honor to God’s Love We Deliver.” Also available as e-cards and in boxes of 12. How to Place Your Order: For cards, contact the organization by phone at (212) 294-8142, by fax at (212) 294-8101; or contact Paul Kearney by e-mail pkearney@ glwd.org. For all other gift items, log on to: www.godslovewedeliver.org/catalog or call the catalog hotline at (212) 294-8143.

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REACH LA

ation who are affected by HIV/AIDS. Tell Me More: Originally produced for an exclusive campaign for World AIDS Day 2013, sponsored by Macy’s, these limited editions of the designers’ products have been sold exclusively at Macy’s Beverly Center Men’s Store in L.A., with 100-percent of the sales benefiting REACH LA’s Ovahness Young Men’s HIV Testing and Prevention Program, part of a health program that offers free health and wellness services. The Ovahness Collection T-shirts were designed from the creative works of the following artists: Sean/Milan™ (creative director/ LGBTQ activist); Shawn Frausto (graphic and tattoo artist); Raphael Cole (fashion designer–F.O. T. A.); Francisco Armenta (graphic artist/ LGBTQ activist), and Manu Horn (fashion designer/make-up artist for M•A•C Cosmetics). How Much: $40. The Ovahness Collection’s Limited Edition Gold Logo Aztec Sunglasses (an on-line exclusive) were designed by Stevie Boi (Eyewear and Fashion Designer). How Much: $250 How to Place Your Order: Visit www.ovahnesscollection.com

photos by Sean Black

ant to help build a community of urban youth and young adults, where color, race, gender, sexuality, health and HIV status are no longer the determining factors of success, and where insight, creativity, and boldness are the drivers to challenge the status quo? Support REACH LA, a revolutionary and innovative organization that transforms the lives of transition-age urban youth and young adults by providing pathways to success, in an environment that ignites passion and creativity. REACH LA’s Department of Social Enterprise helps youth and young adults to create entrepreneurial activities that apply market-based solutions for the purpose of furthering the non-profit’s mission, generating necessary funding, and addressing critical social needs in the youth community. The Ovahness Collection is a six-piece capsule collection of originally designed t-shirts, along with an exclusive pair of sunglasses. It was created by a collaboration of urban designers who, like many of us, are affected by HIV/AIDS. The designers have donated their creative work because they want to express their thoughts about the need for awareness and support for members of their gener-

A&U • NOVEMBER 2015

(RED) (RED)

is helping to work toward an AIDS-free generation by supporting efforts to eradicate mother-to-child transmission of HIV. Purchase a gift from one of the brands with whom (RED) has partnered and you too can help. Partners contribute up to fifty percent of the profits from (RED) branded products to The Global Fund to Fight AIDS, Tuberculosis and Malaria, and the programs in Africa with which it works. (RED), the product-recruiting and brand-savvy AIDS awareness and fundraising campaign started by Bono and Bob-

NOVEMBER 2015 • A&U

by Shriver [A&U, March 2007] in 2006 as part of The ONE Campaign, is an effort to energize the global creative community to raise awareness about the pandemic and support the efforts of The Global Fund, which, through (RED) alone, has awarded more than $320 million in HIV-related grants to programs. Participating products and stores are too numerous to list here, but look for special offers from Starbucks, Live Nation, Moleskin, Apple, Jonathn Adler, and Beats by Dre, among others. Here’s a sample of (RED) products. SUGA(RED) Lip Treatment SPF 15 Launching on December 1, the lip treatment will be available at Fresh stores and fresh.com in North America, and Sephora. How Much: $22.50 (or, 21 days of lifesaving medication can be provided).

Chocolate (PRODUCT) RED Special Edition Deck Endorsed by Elijah Berle with artwork by Sage Vaughn The decks are available on crailstore.com with global shipment and in select retail on December 1. How Much: $55 (or, 17 days of lifesaving medication). Alessi (PRODUCT) RED Special Edition ‘Mediterraneo’ Fruit Basket (Large) How Much: $110 (or, 27 days of lifesaving medication). For more information, log on to: www.red.org.

breaking the

Cocoon

AIDS Advocate Greg Wilson Changes the Game with the Metamorphosis of a Heart by George M. Johnson

photographed exclusively for A&U by Sean Black

few weeks ago, I was given the pleasure to do my first interview and feature for A&U with Greg Wilson, Deputy Director of a youth-based agency called REACH LA. Recently he wrote a book called Metamorphosis of a Heart, a copy of which I was privy to reading so that I could be 42

fully prepared for our interview. As I laid in my bed with a cup of tea by my side, I opened my computer and started to read the book.

This book was simply too good to stop reading. To sum up, the book is comprised of many personal stories of a boy transitioning into manhood and the struggles that helped make him the man he is today. He cleverly does this utilizing the transition of a caterpillar to a cocoon to a butterfly. He addresses the fact that, throughout life, we are constantly going A&U â&#x20AC;˘ NOVEMBER 2015

have struggles. As we get over one hurdle, eventually you will come to a plateau and have another hurdle to jump over. He talks about this in-depth when he writes, “I’m starting to believe that struggling is a constant thing cause once I broke through the cocoon and began soaring, but I soon came to stop. I had to struggle a bit more. To me this transition into a butterﬂy is my purpose. Maybe there’s another cocoon I am meant to break through. Who knows what I will become once I break through the next layer and the next cocoon. And just how many layers are there? How much more struggle? Does it ever end? Will I consistently be striving to evolve into something greater for the remainder of my existence on earth? Are these even cocoons?” The cocoon state is when we feel trapped within the struggle as we search for a way to break out. Greg uses faith and spirituality as his catalyst for emerging through this state several times over. He states: “Spirituality and Faith are more descriptive of the connection I feel to a higher power. It’s hard for me to conceptualize religion beyond spirituality. I’m talking about my spirit. It’s like speaking of my heart. It is the foundation behind something precious to me. It’s a way of life.” The Butterfly state is where he is today. He used his beautiful struggle and journey through life to reach back into the community and help others who have had many similar struggles as he once had. Homelessness, jobless, and HIV-positive, rather than giving up on life, he used this to realize that this was God’s purpose for him and he wanted to serve. “Who would have thought that I would live the life that I have and still have a great heart and positive mind? I am fortunate that my attempts to end my life were not successful. That is the only failure I would claim. I am glad I failed at interrupting my purpose and trying to destroy the great impact I am meant to make in this world.” Greg’s journey is one of perseverance and this book will serve as a tool to help so many caterpillars on their journeys to become butterflies. through this type of metamorphosis. Greg depicts the caterpillar state as one where we have no idea of what we are becoming. We are navigating through life the best way we know how with no true understanding of what the other side will look like. He uses stories about him going through sexual exploration with a “boyfriend” who was doing more harm than NOVEMBER 2015 • A&U

good. Greg’s dealings with this boyfriend exposed his vulnerabilities and forced him into some darker places where suicide seemed like a better option than life itself. Through failed attempts at his own life, he learned how beautiful the struggle of the cocoon state can be. The cocoon is synonymous with the “struggle.” In life we are always going to

Feeling fully prepped, I contacted Greg on a Wednesday afternoon around 3 p.m. The warm, bubbly spirit on the phone mirrored what I had already felt after reading the book. After a few minutes of checking in, we started with our interview. George M. Johnson: What made you write the Metamorphosis of a Heart? Greg Wilson: I know how long it took me to come to terms with my status, sexu-

“

In the book I speak on the metamorphosis of the caterpillar into a butterfly. The caterpillar thinks his life is over until he becomes a butterfly

A&U • OCTOBER 2015

ality, and navigating through my own life. It would be perfect if life came with an instruction booklet, but it doesn’t. So I feel the more people share their personal life experiences it can help others going through the same things to not make those mistakes. The second reason is that it made me free. A lot of people had no idea of my status or what I had been through. I had to ask myself, how I can help other people if I don’t share who I am? I also think the thing that prevented the book from coming out sooner was fear of public opinion, especially from family. I learned that it is bigger than just them and what their feelings are and that it was outweighed by the fact that I could possibly be saving a life with my story. How did you come up with the name for the book? In the book I speak on the metamorphosis of the caterpillar into a butterfly. The caterpillar thinks his life is over until he becomes a butterfly. But the lesson is this: We have these experiences in preparation for what it is that we are truly meant to be. Our heart represents life and the things we feel, and our emotions are held in our hands. That is why the cover is of a person holding the heart in his hand. The heart transitions to a butterfly because the changes that we go through speak to what it truly is that we become. Not letting our circumstances confine us. What inspired the use of poetry to enhance the story being told? I feel that the poetry adds to the emotional connection a person will have. The poems were pulled from the times that I was going through those things and helped him to get through the trauma. How would this book reach those who are not as faithful? Even if someone isn’t religious or spiritual it still can give hope. I feel that people who do not believe in God can still read the book and see that there is light at the end of the tunnel. They can see that there is still something greater that brought them through these things. This can definitely be a tool to help people gain faith and be a launching pad, or starting point, to have belief in things greater than themselves. As far as the book goes, I had one final question for Greg, which he hit right on point! What do you want people to take away from reading the book? By the end of the book, he wants NOVEMBER 2015 • A&U

people to be inspired. It can help parents gain perspective into what their child or friend may be going through. And also provide cultural competency to providers and people who provide services to clients as to what their clients may be going through. That there is a “gift in the struggle,” as he mentions. “A lot of times we get a reward from the struggle. When we go through things it is for a reason and a purpose. The book should help people start reflecting in the belief that there is a reason for everything,” says Greg. For the rest of the interview, I wanted to gain some perspective into who he is and the work that he does. As a person living with HIV, Greg is a leader, motivator, and lifesaver within the community. Working within the HIV community myself, I felt the need to gain perspective on his thoughts around HIV and where he sees himself going. I asked him if finding out he was positive on Valentine’s Day affected his views on love. Greg responded that he considers HIV his first valentine in a sense. He has still never found love. He no longer looks at it as a bad day, but a day of celebration that he is still here and loves himself. “For years it did take me time to get past it, but I realized that if I don’t change the mindset of what that day means and love means then it will always be that,” he says. Do you still see HIV awareness? I think the info is more accessible in terms of people in the community seeing how it relates to them. Coming from an area where HIV was not normalized, it just wasn’t there for me. I didn’t know that I even needed information about it because it just wasn’t talked about. Now you have billboards, commercials, and articles that speak about it and people can see what it is and want to learn more about it. As time went on it took more experience for society to see what needed to be placed out there. I now refuse to have information not be placed in the community that I can now provide for them. The mixed messaging is still a challenge, as it is important that wearing condoms and other preventative measures are still just as important as they once were. What advice would you tell your younger self? Trust that there will be some positive

coming out of the struggles you encounter. The times he wanted to give up he was only being prepared for what his purpose was. I would tell my younger self to just hang in there and know that there will be something greater coming out of this. Where do you see yourself ten years from now? Speaking! I hope to do more speaking and traveling. I want to be more impactful to the younger people going through some of these same experiences. I would also like do life coaching and involve myself in more leadership and mentorship activities. I definitely see more books being written. My ultimate goal is to open a transitional living home for POC. I’ve been homeless, so I saw what did and didn’t work. I want this home to be a place that helps those learn to become independent after leaving the program. As we ended the interview, we continued to speak for several minutes after. Greg graciously apologized for being “talkative,” but I let him know “It’s okay to be talkative when you have something great to say.” Entering the phone call as workers in the same field, I believe we left the phone call as friends and kindred spirits. Greg’s new book Metamorphosis of A Heart may be purchased on-line and in stores. George M. Johnson writes the new column, “Our Story, Our Time,” for A&U. His latest entry appears in this issue.

A&U • OCTOBER 2015

photo by Jeff Vespa/Contour by Getty

Looking: Jonathan with Raul Castillo, Frankie J. Alvarez, and Murray Bartlett (left to right)

EVOLVED ENCOUNTER

Jonathan Groff Mixes Reel Life with Real Life & Looks to the Beginning of the Epidemic for Wisdom Looking duo photo by John P. Johnson/trio photo by Richard Foreman

by Dann Dulin Jonathan Groff is aroused.

In the middle of the crosswalk at the bustling intersection of La Cienega and Santa Monica Boulevards in West Hollywood, California, he enthusiastically high-fives me because he discovers that we’re both devoted I Love Lucy nuts! The singer, dancer, and actor, who early in his career was on the soap One Life to Live, not only has affection for classic television, but he has a surging passion and a spiritual affinity toward the epidemic as well. Moments earlier, on this blinding sunlit day, we met outside Starbucks. He greeted me with a hug then briskly whisked off to order a brew, extending the offer to me, as well. When he returned, we decided that the place was too noisy for a talk. I suggested we walk a few blocks to a friend’s more sedate art studio. An art aficionado, he perked up and inquired about the artist. Toting his coffee and a chocolate graham cracker treat, we set out for the studio. On the way, we were stopped by a fan of Jonathan’s HBO NOVEMBER 2015 • A&U

series Looking, which, regrettably, was not renewed for a third season. (HBO is set to air a Looking special in early 2016.) The guy feverishly asserted, “My husband and I love your show and how honestly it portrays the gay community. I’m not just a fan, I’m also an actor and I compliment you and the show.” Jonathan smiled graciously and we moved on. Jonathan lamented about the cancellation of Looking, which was in the vein of Girls, Sex and The City, and Queer As Folk. “We were all just becoming familiar and grasping our characters. It’s

too bad.” We then discussed how it takes awhile for an actor to find the true character like it did for Lucy Ricardo, Mary Richards, or Rhoda Morgenstern, two more of his favorites. “If you look at early episodes of I Love Lucy, The Mary Tyler Moore Show, or Rhoda, their characters were not fully developed either,” he points out. Looking was the first TV show in a long while to spotlight HIV and AIDS. In the second season, Jonathan’s character, Patrick, even goes through AIDS anxiety because he had unprotected sex. He was so anxious that during a night out with his friends at a bar, he asks one of them to join him in the bathroom. Once there, he raises his T-shirt and shows him a small patch of redness on his stomach. “Look at those little red bumps, right there,” remarks Patrick. “Is it bed bugs? It wasn’t there this morning. It’s definitely not AIDS...is it?” His friend assures him it’s not. Patrick’s worries continue to haunt him until he gets tested and the results are negative. “I’m glad we touched on this because it’s a universal thing—gay and straight,” notes Jonathan, now in the art studio and poised on a crimson-red loveseat. “I think AIDS panic is good because it keeps us aware. It’s better to err on the side of AIDS panic than not. Scaring people into having safe sex is not a bad thing.” “The first time I was tested was when they discovered melanoma on my chest, which was about seven years ago,” he asserts. Fortunately, the cancer was removed with surgery. “I wasn’t freaked out [about the HIV test] like Patrick was. It was rather low-key. I get tested every year now or when a boyfriend turns into a serious relationship, or before I put myself in a potentially dangerous situation.” Jonathan is currently single, though several years ago he had a two-and-a-half year relationship with actor Zachary Quinto. “I’m not HIV-positive, so I imagine it’s quite stressful to bring the topic up when you’re dating. The more we talk about HIV in every day life the easier it becomes. It doesn’t have to be awkward, taboo, or intense to talk openly about sex. It should be a part of the getting-to-know-you part, before you have sex,” persists Jonathan. He breaks off a bit of the chocolate graham cracker and plunks it in his mouth. “One of the hang-ups I find with dating

is that often times people have decided what they want and what they like before even meeting someone,” observes Jonathan. “There are many labels people use nowadays and it’s limiting. I wish people would get to know someone before deciding. Having HIV is so much more than a label. There’s got to be an organic moment of connection instead of, ‘Hi. I’m soand-so and I have HIV, just so you know.’ That can possibly freak somebody out and push them away.” This solidly built guy, who’s been naked on screen several times. Is mild-mannered, easygoing, and lively. He looks as though he just stepped off the UCLA campus in his regular fitting jeans, New Balance running shoes, a red t-shirt (his favorite color), a faded dark blue hoodie, and a flag blue baseball cap with its Fog Rugby logo. A few short strands of hair sweep out of his turned-around cap, like thistles of dark hay. There’s a confident calm about him, almost angelic. In fact, during our time together, his cell goes off and the tone is a tranquil strumming harp. While shooting episodes of Looking, the crew was at times concerned that the audience might think they were making light of the epidemic. “With the AIDS panic scene, we wondered if people who are infected would be upset with that kind of comedic take. But I think the relatability of the moment allowed people to embrace the humor of it,” Jonathan explains, taking a swig of java. “We knew in the back of our minds, though, that with the character of Eddie [played by Daniel Franzese, A&U July 2015], who’s HIV-positive, that he was being shown in a modern sensible way on how someone infected could lead a healthy life. Several of my friends are HIV-positive and Eddie represents them well.” Earlier in the year, Jonathan was at his doctor’s office in New York for a checkup. The doctor praised Looking and telling

Jonathan: “I’ve been treating people for HIV since 1982 and no one has ever come in talking about the disease until now after those [HIV-themed] episodes aired.” His doctor became emotional and continued, “Please send my thank you to the people who do your show. There’s such little gay programming on television. People are watching your show and adhering to it like the Bible.” The actor who’s the voice of hunky iceman Kristoff in the wildly popular animated Disney film Frozen insists strongly again, “It’s so important to talk about this A&U • NOVEMBER 2015

photo by Charlotte Wales

“I think AIDS panic is good because it keeps us aware. It’s better to err on the side of AIDS panic than not.”

“I think in some way, entertainment has a responsibility to be

true-to-form

and real as possible.”

disease!” He leans forward, hunching with his elbows on his knees. “The episode where Patrick is fucking his boyfriend Kevin, Kevin takes out the condom and sensually tears it open with his mouth then gives it to Patrick. He makes it a part of the sex act. It’s hot….” Jonathan declares in a soft sensual voice. “The fact is you don’t know how many lives you’ve saved by just those few moments. This is really major. Even though it’s 2015, people are still uncomfortable confronting sex.” He clutches his empty coffee cup, holding it securely near his heart. “I think in some NOVEMBER 2015 • A&U

way, entertainment has a responsibility to be true-to-form and real as possible.” Jonathan certainly has lived up to that standard by being a part of the ensemble cast of the film The Normal Heart and of course, Looking. Jonathan was thrilled to be a part of Larry Kramer’s The Normal Heart, the story of the early days of the epidemic based on his activism. Jonathan considers Kramer a hero. “His legacy has sustained,” he says thoughtfully. “Larry came to the set when we were shooting the White Party at the beach on Fire Island. He wasn’t there very long when he burst into tears and had

to leave. It seems to have brought back too many tragic memories of the loss of his friends,” recounts Jonathan, tugging on both sides of his hoodie to adjust. “When I went to see the premiere of the play on Broadway, he was out in front of the theatre handing out pamphlets. Then at the premiere of the film at the Ziegfeld Theatre [in New York], after the screening, he stood up as people applauded, and he gave a speech. The man is a legend—and he fights hard. Larry Kramer is still the go-to dude.” To play Craig, his character in The

Normal Heart, Jonathan sought out a friend who lived through that devastating era. “We met for dinner one night and I picked his brain. He told me that in the onset of this disease he and fifteen friends were talking about the shock of it all. Then in ten years, there were only three of them left….Fuuuck…,” Jonathan says ruefully in a mesmerized stupor of disbelief. There’s a long interval of silence. “Even though I didn’t live through the eighties,” he says, “I feel connected to it.” His demeanor changes and his light ice blue glinting eyes dampen. “I can see myself there. I feel a kinship to that generation,” clarifies Jonathan with sincere authenticity, almost ethereal. “I think by working with Broadway Cares I was shrouded in that whole historical experience.” He stops. Jonathan looks about the room filled with dipped-in paints, different sized brushes, and an overhead projector. “I can’t even articulate it. I feel emotionally connected in a deep… guttural…level,” he attests tenderly. “I don’t know what would have happened if I were in my early twenties living back then. It was an intense time. I’m respectful of it and it makes me feel sad. I’m so drawn to that era….” As a child, it was somewhat different for him. “My first memory of the epidemic was when I was a kid,” he reflects. “I remember associating gay with AIDS and dying. I was about ten and went to King May Beach in Wildwood, New Jersey, a gay community. I walked up to a bookstore and on the door was a rainbow flag. I was gay so I knew about the colored flag. I grabbed the doorknob ready to walk in but just stared at the flag. I quickly wiped my hand on my clothes and ran away. My ten-year-old mind saw the flag that meant gay that meant death. Oh, I was horrified.” A Pennsylvania boy, Jonathan moved to New York at twenty and soon landed on Broadway, originating the role of Melchior in the rock musical Spring Awakening. He stayed with the company for over two years and received a Tony nomination for his demand-

A&U • NOVEMBER 2015

photo by Charlotte Wales

ing performance. He was twenty-two. When asked what one of his favorite life moments was, he replies, “The last night of Spring Awakening. Lea [Michelle] and I were leaving the show together and the audience bought tickets knowing it was our last performance. It felt like a rock concert. That was a…a Real Moment,” hums Jonathan, brightening a comfortable grin recalling the cathartic memory. Jonathan and Lea hooked up professionally again a few years later on Glee. He had the reoccurring role of Jesse St. James, a Vocal Adrenaline alum, who was the love interest for Lea’s character, Rachel Berry. In fact, earlier this year, he was in Los Angeles to shoot the last episode. “It was really moving. Everyone cried all day.” It was during Spring Awakening that he performed in Broadway Backwards, an annual fundraiser that benefits Broadway Cares. This was not his first endeavor with the iconic organization. “When I first moved to New York, I was waiting tables. Tom Viola [executive director of the non-profit] came into the restaurant. He stated, ‘You’re an actor.’ And I replied, ‘Yeh.’ He said, ‘You should volunteer with us because you can see the ends of all the Broadway shows for free by collecting money.’ So I did that for a year.”

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Jonathan was already familiar with Broadway Cares, as during his high school years he attended many Broadway and off-Broadway shows, like Angels in America and The Normal Heart (“These plays were mesmerizing and mind-blowing....”), and recalls the red buckets the volunteers would carry to collect money. “At the end of a Spring Awakening performance, when I would make the announcement about Broadway Cares, I Elton John and Jonathan Groff (Photo: Getty Images) remember seeing some of the same volunteers when I first started doing that.” he’s down, angry, or feels overwhelmed— Jonathan continues his activism this which is not often he offers—he takes to month, serving as an Event Chair for Elton the street for a run, to the gym to exercise, John AIDS Foundation’s 14th Annual New or reads a book. He’s currently reading Go York Benefit Gala. The benefit is called An Set A Watchman, Harper Lee’s prequel to Enduring Vision, and will be held at Cipriani To Kill A Mockingbird. One thing Jonathan Wall Street in New York City on November worries about is responding to people, 2. Just last month GLADD and the Elizabeth as with a text, an e-mail, or phone call. Taylor AIDS Foundation launched a gripping That’s a refreshing attribute in this day of PSA in which Jonathan appears. fast-paced technology, Attention Deficit Having turned thirty this year, JonaDisorder (A.D.D.), and haughty ego-centhan admits he went through pangs of teredness. “I feel incredible guilt if I don’t “Oh-my-gosh-does-that-mean-I-have-torespond to someone,” he bridles. have-my-shit-together?” Well, it seems As our time draws to an end, Jonahe’s evolved quite nicely. In 2010 he made than rises up and roams about the studio his West End debut in a production of glancing at completed canvases by resDeathtrap, starring opposite Simon Russell ident artist, Davidd Batalon, which are Beale, a critically acclaimed talent. He stacked up against several of the walls. “I also appeared in a blazing production at really like this overhead one. I’ve never Los Angeles’ Mark Taper Forum in Red, seen an airplane from that perspective,” appearing with Alfred Molina in a twohe mutters quizzically. Jonathan spies man drama about the artist Mark Rothko. several paintings that display male nudes Jonathan played Rothko’s assistant, Ken. in sensual positions. Studying one piece, (Eddie Redmayne won the Tony award for with his back toward me, he slowly his Broadway portrayal of Ken). Jonathan’s turns around, faces me straight on, and performance was riveting and searing. pointedly states, “You know, sex is only Taking Woodstock was his first film. dangerous when it’s not brought out in Directed by Ang Lee, Jonathan played a the open. I know I’m repeating myself, long frizzy-haired hippie, Michael Lang, but that’s the point.” He takes a considwho was the organizer of the legendary erable pause. event. To get into character, Jonathan spent Still standing, the afternoon sun several days with Lang and his family. streams in through the window and illumiSeveral years later he appeared in C.O.G. nates his features. Jonathan folds his arms, Co-written by David Sedaris, Jonathan glances into space as if recalling a memory played Sedaris, which is loosely based on then flashes his trademark gleaming boythe author’s life. In last year’s American ish smile. “I’ve learned so much from my Sniper, Jonathan was a Vet playing oppofriends who lived during the early AIDS site Bradley Cooper. days—and it’s important to have people in Appearing recently on Broadway as your life who keep you accountable.” King George III in the hip-hop musical Hamilton, about founding father AlexanThank you to Matthew Hetznecker for his incomder Hamilton, Jonathan received ravishing parable support. reviews for his performance. It can be a hectic schedule doing eight shows a week, Dann Dulin interviewed Dr. Rachael Ross for the but to chill, Groff takes yoga classes. When September cover story.

A Not-So-Simple Journey The Impact Of One Man’s Diagnosis Fuels His Crusade To Benefit Others by Dann Dulin

all it luck. Call it fate or destiny. Better yet, fortitude. Had Jerry Hughes, founder and executive director of the Hughes Foundation (HF), not been scheduled to fly to India in 2004, the organization may have never been established! In May 2004, preparing for a trip to speak at a 300-bed Christian youth camp in Nagpur, Jerry went to his doctor for vaccinations. His doctor advised taking a rapid result HIV test. Within twenty minutes, Jerry learned that he was positive. It hit

him hard like a swift streak of lightning. After his initial shock, he had to decide whether he should travel to India as planned. Jerry first spoke at the camp a year earlier. Despite his extreme trepidation, Jerry decided to keep his commitment. “I’m a loyal person and I worried more about letting the youth down. I pushed myself to go. I’m used to challenges and I tend to deal with a crisis better than I do picking out a pair of shoes in the morning.”

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of HF. Can you elaborate? We have a program called Wheels of Hope, which provides HIV-positive children with transportation to reputable doctors. We also mentor children who need help with their education and physical needs such as food and clothing. An HIV care facility is being planned where trusted volunteer doctors can administer medications. HIV testing and counseling will be provided as well.

Billy Graham Association for an international evangelical conference called Amsterdam 2000. He oversaw 800 volunteers from forty-three countries for a three-week conference. (Through this, he met his current Hughes Foundation partnerships in Namibia and India.) After this conference, Jerry increased his international speaking engagements. He began writing his memoirs and titled it Living The Positive Life; however, the writing project is now on hold so as to focus more on HF. Today, Jerry is well and on a drug regimen of Truvada, Presizta, and Norvir. In fact, as of September, he quit his job, sold his car, and other belongings and moved to India. His mission is to create a stronger HF presence. He supports himself on his savings and some public donations. He does not receive a salary. After a twenty-one-hour flight, two suitcases, and one carryon, Jerry arrived in India. Dann Dulin: You survived the transition and now aboard a life-changing adventure. How are you doing in the land of Bollywood? Jerry Hughes: Everything is going great. I am full of purpose, and my challenge is fundraising. India is home to me, though I don’t know for how long. I never meant to move here permanently, but who knows?! I came here in faith, having sold most of my worldly possessions. I feel like a monk. A team of three has become the family I never had, along with thousands of kids that I get to serve. I always wanted kids of my own but this is better. Still there are days when I lay on my cot and say to myself, ‘What the f— did I just do?’ You moved there to take HF to the next level and establish Big Brother India, an extension

How does HF get the word out? Much of our work is done via social media. Actually, our strongest following is eighteen to twenty-four year olds in Pakistan then India, with Namibia in third place and the USA in fourth. They are newly diagnosed people and they reach out to us for support. I believe in this work and we have the opportunity soon to go to the next level. What exactly was it that stirred you to create this Foundation? It was a result of that speaking engagement in 2004. The first night of the five-day camp, I shared my story. The reaction was one of shock when I told them I had just tested positive for HIV. However, when I asked anyone who was impacted by my story to please stand, everyone stood except a handful of people. This was rare, particularly for shy Indian youth and because they had been taught that HIV was sinful. I was advised by the leaders of the camp not to share my status, as the youth would not accept me. That didn’t happen. What kind of impression did that night have on you? I saw the world differently. I saw the needs and the effects HIV and AIDS were having on my friends, particularly in India. It motivated me to do something. At the time, I was working full time at an advertising agency, but once I returned to the USA, I formed a board of directors—pulled some friends together—and I applied for the 501(c) 3 status, which I was approved for within thirty days. Everyone said I would be denied since I didn’t use an attorney for the paperwork. I proved all A&U • NOVEMBER 2015

all photos courtesy J. Hughes

When he returned to the States, Jerry decided to create the Hughes Foundation. It was incorporated in 2005. Jerry was raised by his mother, sixteen at the time of his birth, and Grandma Hughes, in a small farming community in Steamboat Rock, Iowa. Growing up among devout Christians, he was taught early on to help others. Mentors in the town of 300 also greatly influenced his moral outlook. All through high school he participated in Mission trips, even driving to Rio Grande City, Texas/Mexico, to construct buildings or hold children’s camps. He was an only child with an absent father whom he never knew. Jerry believed the church congregation viewed him as a “project” that needed to be “saved.” Also, being gay didn’t help and neither did being HIV-positive. In fact, many family members have rejected him due to the virus. For years he struggled with issues of self-worth. While studying at Northwestern College, in Orange City, Iowa, he racked up credit cards buying friendship and love, and it left him $150,000 in debt. (“I was scared people would stop being my friend if I didn’t wine and dine them or buy them gifts. I was struggling with abandonment issues back then.”) He graduated in May 1996, with a BS in Business Management (being a Christian college, Jerry was required to have a degree in bible studies as well). He landed a position at American Express Financial Advisors in Minneapolis, where he lived for many years. (In all, Jerry spent ten years in the corporate world.) In 1999, he lost his job. Still in debt, he became an escort for several months. His clients were mostly corporate married men. Jerry then signed an eighteen-month contract as a volunteer manager with the

Does HF plan to expand anymore? We do not—unless—we can find some strong financial supporters. We have respect and trust around the world and many invitations to partner with others. Our short-term strategy is to grow our work in India. India has been a place where we really do well. We have a strong team and it flows well.

the naysayers wrong. They just motivated me more, since most of my life I was told that I would not amount to anything. How do you deal with troubled times? I face fear. I walk through it. I run to my problems. I want them resolved and healed as soon as possible because this creates a place of peace in my soul. It’s One Big Circle. Never having anyone to rely on, I could always depend on prayer. All I had was faith. It saw me through many times when I felt alone or confused. I have a strong belief in God. I know the God I was taught is not the God that I believe in. The God I believe in loves everyone and no one is omitted. We… all…matter. Has the church been beneficial to you? The church I was attending during my diagnosis [Sanctuary Covenant Church in North Minneapolis] was a huge support for me. It had a lot to do with the loving pastor, Efrem Smith, who is no longer the pastor. He called me to the front of the church after I was diagnosed and had people pray for me. He commanded the congregation to stand by me in love. This was powerful and it helped me to start leading religious sessions. One devastating challenge you experienced was the period you were broke, jobless, in debt, and resorted to escorting. How did that influence your life? I hated being an escort. I felt an immediate satisfaction then would feel so cheap once I left each situation. I ultimately tried to end my life because I felt so unworthy. Religious guilt was also looming in my mind, which came from the lies I was told by the very strict religious community of my youth. Do you have any certain practices that get you NOVEMBER 2015 • A&U

through life challenges? Sometimes I will look at myself in the mirror and say, “You are so sexy and people love you! I have purpose and a calling. Now get off your ass and start working it!” My life is quite simple. I have chosen to live happy— and that my day, my week, my month, and my life is about leaving a legacy. Where does that attitude come from? From my Grandma Hughes, who taught me things that allowed me to be equipped in life—the power of words, the power of hard work, and the power of being kind to everyone.

I was twenty-six years-old and fresh out of college. I would routinely go to the Red Door Clinic, a free HIV testing center in Minneapolis and receive an anonymous test. At that time I had to wait nearly a week for the results. The waiting period was brutal and created so much anxiety. Have you had any opportunistic infections? Actually I never had any symptoms or infections from HIV and I credit early testing and treatment for that—and a lot of self care, too. In many photographs, Jerry, you sport a cap. Is there a reason? I love hats! It’s just my style. However… in 2006 I did a TV interview in Windhoek, Namibia, wearing one of them. Before I went on, I questioned whether wearing one might be disrespectful or unprofessional. Then I thought, “Dammit, wear it!” After that aired, many youths contacted me to find out where I bought it. They also wanted me to sign their hat. Most of my audience is young people and they usually don’t like to hear or talk about AIDS. But I found that if I deliver my message with a hat, they listen.

Have you lost friends to this disease? Yes, particularly as I went public with my story. One story that I always remember is about a woman that I met in 2007 while doing some work in Nagpur. After speaking at a local event, a lady asked if I would come meet a woman that lived next to her. This woman lived in a slum. She was lying on her bed dying from AIDS. Her body was as frail as a stick. She had been infected with HIV from her husband, who had already died. She was not being treated, as medications are not a right but a privilege in parts of India. Most of her family had abandoned her and she was alone. I sat next to her and touched her. She spoke Hindi, I spoke English, but the universal language of love has no barriers. I stayed with her for several hours and she cried knowing that I too was living with HIV. Later that week she died. This woman is the face that motivates me to do what I do. The pandemic is very personal to me and I am mad as hell at the disparity within the HIV and AIDS community.

At his blog, watch for videos, notes, graphics, updates at http://blog.hfhope.org. To support Jerry and his kids, and access the main website, log on to: www.hfhope.org.

How old were you when you first got tested?

Dann Dulin is Senior Editor of A&U.

Who has inspired you in the epidemic? All of the children who are born with HIV through no choice of their own and who are forced to live life, in most cases, without parents. They are my heroes—and they are my driving force.

Fare Exchange

For the Compassion that Kurt M. Schwartzmann Re-

ceived from MUNI Operators When He Needed Help the Most, the Artist Created a Loving Tribute to the Drivers Who Make Sure Passengers Get to Their Destination by Jackie Bolles

rtist Kurt Schwartzmann is a relatively new face on the San Francisco arts scene. His first local show opened recently on August 29 running through September 4 at the First Congregational Church of San Francisco on Polk Street. This exhibition of his works was in honor of San Francisco MUNI Operators, a group rarely, if ever honored by an artist. The show was well attended by MUNI operators and their families, as well as friends and the general public. I know Kurt as a fellow student at the City College of San Francisco, Fort Mason campus. We met in a printmaking class, and have continued our relationship as friends and fellow artists. He is a talented and charming man. He has a singular and

interesting take on the world, and we will continue to hear from him as he grows as an artist. Kurt tells me: “I was diagnosed HIV positive (not AIDS, as that diagnosis came later) in the early nineties. I was given six months to live. I remember the ‘white coats’ (my doctors) telling me to go on medications right away. I replied, ‘No. You take the meds for six months, then if you’re still alive, I may consider your request!’ My reasoning behind it all was that the meds were killing my friends. I would watch countless friends take their doctor’s orders, and they were dead within six months. One friend in particular was instructed to put on rubber gloves while taking his meds in order to protect his skin from the toxic pills. Another friend asked

me to ‘hide’ his meds in a cake so he could tolerate them. I was a baker by trade, so it was an honor to help him. I vowed to myself that I would not go on meds till I saw or felt something wrong. “I strongly believe that my convictions kept me alive, and I was not alone in this belief,” Kurt says of his survival through this first bout with HIV. Then in 2006, “The door bell rang. I went to answer, and realized that I could not see anything through the peephole. The loss of vision had come slowly, painlessly and progressively over several months, such that I didn’t notice what was happening. In 2006 an opportunistic virus, Cytomegalovirus (CMV) retinitis attacked my left eye from behind. The doctors were unable to detect it until it was too late. I am lucky that the CMV didn’t go further and attack my brain, as there was some concern about that.” He was rushed into surgery, where an implant filled with Ganciclovir was inserted, the theory being that the medication would kill the virus without killing Kurt. It was too late. CMV had severed the optic nerve completely. Kurt explains, “There is no sight at all, not even light.” He retains the eye, which appears normal. Kurt is easily recognized wearing a

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rakish black eye patch moving about his beloved city on MUNI. When this body of work was being created, he would be sketching his favorite subjects, namely the operators of the transit system, as he rode to and from classes at Fort Mason. The work in his recent show, called “Yellow Line” (The line you must stay behind on transit vehicles for safety!) depicts the varied experiences of the riders, the operators, and details of the conveyances. Early in 2008, homeless and living on the streets, Kurt found safety and a place to sleep on the MUNI buses that crisscross the city, day and night. He expresses gratitude for the “fare box that accepted whatever change I had, and drivers who allowed whatever payment I could manage, without humiliation or scorn.” He describes MUNI as making “public transportation available to me, and to all.” Referring to his monocular vision (through one eye), he notes that what most would call a handicap has given him a unique ability to focus in on his subject matter. Kurt used his singular approach to concentrate on the creation of sixty-four drawings that depict his view of what is in front of that “Yellow Line.” His work is a tribute to the San Francisco MUNI Operators, who tolerate endless drama, and still manage to keep the city moving, regardless of what may come, rain or shine. The drawings are matted and framed with yellow lines dividing one from another. Further, each drawing shows the yellow line that greets everyone entering a MUNI vehicle, the line that you must stand NOVEMBER 2015 • A&U

behind; thus, the name for his series. He draws the fare box highlighting those that welcomed his coins in leaner times. He draws the MUNI Operators, concentrating at all times on the street and traffic ahead. He always draws a different driver, always demonstrating that same attention to the task at hand, namely getting the passengers to their destinations. He draws the tools the drivers need for their job at hand, he draws the doors opening and closing. The medium Kurt works with in this series is pen and ink, watercolor, acrylic pen, on cold press watercolor paper. His drawings are 3.5 inches by 16.5 inches. He describes his choice of drawing proportion as a “slice of life,” as he sees it. The San Francisco Municipal Transportation Agency (MUNI) oversees transit, streets and taxis in the city of San Francisco. Kurt constructed, and created drawings on, several collages made of the transfers that everyone who has traveled the MUNI system in San Francisco knows they must secure upon entering the bus. The transfers are good for traveling from one vehicle to another, and are color-coded to the month of the year. They are still in use today, although there has been some talk of discontinuing their use in favor of all-encompassing plastic passes. The destination of many trips that Kurt Schwartzmann made while creating the series was the City College of San Francisco, Art Campus at Fort Mason. Kurt was encouraged by his then partner, and now husband, Bruce, to pursue his lifelong love of making art. One of his first efforts,

while taking a printmaking class, was to design their wedding invitation. It was in this class that I first met Kurt. Art grabbed Kurt, and took him, as all art making does, to where he had never been before. It is where he is today, offering his work, and continuing to pursue the creative process. About Kurt’s exhibition, he says; “Tom Nolan, Chairman of the Board of the San Francisco Metropolitan Transit Authority came to my show opening night and we posed together, as his partner took pictures of us and my work. He said he had been reading about me in the Society Pages of the Chronicle. Leah Garchik’s column has quite the following! He said he would share my work with his Board members. He asked a few questions concerning my appreciation for the MUNI Operators.” Most recently, my friend Kurt has fallen in love with that San Francisco icon, the Transamerica Pyramid. He is constantly photographing it from it’s many angles from various vantage points throughout the city. He posts many of his pictures on Facebook. He is answering the landmark building’s call, “Photograph me, draw me, paint me, sketch me, interpret me.” We are just hearing the beginning of this artist’s story. He promises much to come! To see Kurt’s series on FaceBook log on to: https://www.facebook.com/YellowLineArt. Jacqueline Bolles is a Boston transplant to Southern California. She is an avid gardener, a sometimes artist, and a literary spectator. Reach her by e-mail at jackie.bolles@gmail.com.

lifeguide

The Price of War focus on treatment cost emerges at the global health summit on hepatitis

• a ninety-percent reduction in new hep B and C infections. • a sixty-five-percent reduction in deaths from hep B and C. • providing treatment for eighty percent of people with hep B and C. • increasing the percentage of injections carried out safely worldwide from five percent now to ninety percent. Using a model produced in collaboration with Aidsmap.com, Wiktor admitted that the final cost could change depending on the pricing, timing, and competition of generics of direct-acting antivirals for hep C when patents on the drugs expire. And Wiktor said that $11 billion annual figure might peak in 2025, falling to $9 billion in 2030 as harm reduction and hepatitis B treatment costs begin to decrease. Wiktor’s map assumed that drug prices would be sharply reduced by 2020 and he acknowledged that harm reduction intervention programs—like syringe exchange and opioid substation therapy—would be

the costliest budget items over the next five years. Who pays, and how? Wiktor and others addressed the challenges of allocating money for hepatitis prevention and treatment. Several presenters at the summit shared innovative ways of paying for hepatitis treatment in lower-income and middle-income countries, where access to new antiviral drugs is very limited outside higher-income countries. Greg Perry, Executive Director of the Medicines Patent Pool (MPP), said his organization, which was created with the help of UNITAID, could negotiate voluntary licensing agreements with pharmaceutical companies and overcome barriers to the development of fixed-dose drug combinations of products from more than one manufacturer. Perry said that since its launch in 2010 MPP has negotiated voluntary licensing agreements with all major pharmaceutical companies that allow some or all of their antiretroviral products to be copied by generic manufacturers and sold at greatly reduced prices in lower- and middle-income countries, and that such an approach might be used for viral hepatitis meds. Perry said it would be possible to negotiate voluntary licensing agreements to allow the development of pan-genotypic combinations—or equally effective against all genotypes of the hep C virus—of direct-acting antivirals. Some advocates, including a representative for Initiative for Medicines, Access and Knowledge (I-MAK), argued that compulsory licensing by governments would be required for widespread access to lower-cost hepatitis meds in middle-income countries. But an attorney with expertise in compulsory licensing told delegates that strategy was not the best way to provide low-cost drugs worldwide, because of its long timelines of litigating such licensing on a country-by-country basis. Several presenters, including Brook Baker of Northeastern University in Boston and Peter Bayer of the World Health Organization urged governments to set up programs to test and treat for hepatitis C. Baker said

that a high level donor funding for hepatitis treatment in lower- and lower middle-income countries was crucial to create the level demand that would make generic versions of direct-acting antivirals affordable. Some presenters introduced other innovative funding approaches, such as sharing costs for meds and harm reduction with existing programs within the health system, such as HIV for harm reduction and for treatment of coinfected people. More than one presenter used the examples of middle-income countries that are taking action against hepatitis, including Egypt, which has substantially increased access to medications; Georgia, which has set a goal for the national elimination of hepatitis C; and Mongolia, which will soon implement comprehensive strategy for controlling viral hepatitis. The highlight of the Summit’s closing session was launch of the Glasgow Declaration, which called on governments to implement comprehensive, funded national hepatitis programs in line with the World Health Assembly Resolution 67.6. The full declaration can be found at www.worldhepatitissummit.com. The second global summit will be held in 2016 in Sao Paulo, Brazil. Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His podcast on employment issues, “Labor Pains,” can be found at www.laborpainspodcast.com. A&U • NOVEMBER 2015

illustration by Timothy J. Haines

ost of treatment and prevention in the war on viral hepatitis was the overriding theme of the first Global Health Summit on Hepatitis, which drew more than 1500 policy makers, academics, ministers of health, patients, and patient advocates in September in Glasgow, Scotland. Organized by the World Health Organization and the World Hepatitis Alliance, the summit was a response to the Alliance’s 2014 resolution calling for urgent action to reverse the rising death toll from viral hepatitis—which is the seventh leading cause of death worldwide. Over three days delegates discussed public health research priorities, and practical steps countries can take to meet the forthcoming WHO Global Hepatitis Strategy, and share innovative ways to pay for treatment and prevention of the hepatitis B and C viruses. In a keynote address, Stefan Wiktor of the WHO Hepatitis Program said that it would take global funding equivalent to $11 billion per year for the next ten years in order to achieve the WHO’s proposed targets for controlling viral hepatitis by 2030, including:

High Bar

Jeannie Wraight: Recently, Nobel Prize Laureate Françoise Barré-Sinoussi stated that she did not feel a cure for HIV is possible. What are your thoughts on that? Dr. Harold Smith: “Cure” as a word is being used as an absolute and that’s a problem. We need to explore what a cure could be and how to define it. What if you could treat someone with a new therapy and afterwards they don’t need treatment again for the next ten years. Or what if you could only cure one particular clade? Are those cures? For those people, yes. So, when we use the word “cure,” we’re going into a dangerous realm because it’s a convenient term for a complicated scenario. If you look at the past twenty-five to thirty years of therapeutic development, we’ve had great success in buying people time and reducing illness. That’s the positive outlook. The negative outlook, from the cure perspective, is that those thirty years represent complete failure to cure. It was determined early that if you’re going to be successful then you should set the bar a little lower, maybe first just reducing viremia and that’s what the pharmaceutical industry did. We haven’t been able to get to a cure and that may lead some to say that a cure is not possible. We have to be open to the NOVEMBER 2015 • A&U

possibility that we may have missed something. I think not rigorously pursuing Vif [a protein of HIV and a potential drug/cure target] has been an opportunity lost. Each time industry develops something new, like integrase inhibitors, that’s more effective, more broadly neutralizing, has more tolerable side effects, it raises the bar for anything that might come after. It has to at least satisfy this bar and integrase set a whole new bar with low cytotoxicity, once a day dosing, etc. The industry is saying that a cure, whatever you come up with, can’t even sit at the table until you show low toxicity, low side effects in a laboratory, and that you can generate drug-resistant strains, because every form of HIV therapy and every drug target has always had the quality that in the laboratory people expect the virus will work around it and drug resistance will develop. But think about a cure. A cure can’t be something HIV works around. What if cure is something in between Timothy Ray Brown and integrase inhibitors? What if it’s like a shock from hell where you’re hospitalized for six months but after that you have a lifelong cure. Would people take it? I would. So, why does a cure have the same rubric as long-term life treatments? We’re almost shooting ourselves in the foot by having what we know doesn’t work for a cure serve as the standard for bringing a cure forward. Most people would say, if you keep doing something and it’s not working, maybe you should do something else.

I’m saying that there are other essential parts of HIV like vif that remain completely unexplored even when the evidence is there. If someone’s really upset that there’s no cure, they should evaluate if we’ve exhausted all our possibilities and if we haven’t-why? Why are we not spending our resources testing diverse and divergent hypotheses, not just those coming from a few key opinion leaders and industry? Right, so is it a scientific issue, or is it a political and financial issue? I’d say it’s both. There’s not enough money to go around. I’d say the most devastating thing to a field is KOL [key opinion leaders] because nonscientists, scientists, and peer reviewers tend to listen to and popularize these opinions instead of thinking for themselves. A cure is likely to have many different dimensions requiring many people thinking about it. Jeannie Wraight is the former editor-in-chief and co-founder of HIV and HCV Haven (www.hivhaven.com) and a blogger and writer for TheBody. com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in New York City.

illustration by Timothy J. Haines

orking in HIV cure research, developing potential HIV therapeutics and eradication strategies focused on ABOBEC3g, Dr. Harold Smith of the University of Rochester had some interesting insight into whether a cure for HIV is possible and how current and past HIV research and perspectives may be affecting our ability to develop a cure, or cures, for HIV. In the first part of this two-part series, which ran in the October edition, Dr. Smith discussed his groundbreaking research on ABOBEC3G and its relationship to cure research. Here, he delves into how we define “cure,” the limitations of comparing HIV treatment regimens and HIV cures, and how our knowledge base might be expanded.

have we limited cure research by approaching it through a treatment paradigm?

Team Effort working together is one of the keys to wellness

hen we approach wellness from a whole perspective, we look not only at the physiological aspect of health, but we endeavor to care for the mind and spirit as well. Meditation, cognitive healing, visual and positive imaging, empowerment coaching and varied forms of therapy and counseling are all considered complementary and alternative options that can nurture the mind, lift the spirit and support mental health. This is an important task when we consider the depression and anxiety that can accompany living with HIV. What precisely do we wish to accomplish by engaging in treatments that focus on the mind and spirit? Certainly, the answer to that question will be personally driven and different for each of us. For me, the one word that often comes to mind, and that I often hear from clients, is “empowerment.” In addition to the vast array of options available to us through trained professionals, we can find empowerment on our own, within ourselves, via our own choices and actions—through setting and achieving pertinent goals, reaching landmarks, lending our skills and talents to a cause and becoming a part of community working toward a common goal. Often times it is a shared experience, such as the fight against HIV/AIDS, which forms the strongest of bonds. For three days in the month of September, I, along with people from different parts of the country and different parts of the world, traveled from Boston to New York City for one such extraordinary shared experience. I had the privilege of being part of a team of volunteer massage therapists on Cycle for the Cause: The Northeast AIDS Ride; an annual event where hundreds of people ride 275 miles to raise funds for the HIV/ AIDS services at the New York City LGBT Community Center. Along the way there are flat tires, broken bicycle chains, and worn-out brake pads. There is the occasional fall or crash. Without question, there are aching forearms and shoulders after a day of gripping tightly to handlebars. There are cramped calves, sore feet, tight glutes, contracted quadriceps and hamstrings in need of a helping hand after hundreds of miles on bike. There are

sunburns, dehydration, and a variety of injuries and ailments along the way. But the cyclists, no pun intended, are driven. And the crew is there to support them every step of the way. Each individual, rider or crew, lends his or her strength, skill, talent and caring to achieve a common goal. The cyclists who challenge the blacktop and assorted elements along the way train all year long for this event. Supporting them in their journey are hundreds of crew members—medical teams, road crews, pit stops, bike repair, safety teams, command centers, and more. This event is a community of people from every station in life brought together by a common goal and bound together by a common thread. It is indeed an empowering experience for all who participate. The riders train for many months, if not more, for the journey. Practice rides take place that increase in distance over time. To set and achieve this type of goal is not only good for the body from a physical standpoint, but such an accomplishment strengthens the mind and spirit. It addresses wellness from a whole perspective. Every cyclist and every crew member has a story to tell and a reason why they do what they do. One such inspirational group is known as the Positive Pedalers. I had the opportunity to speak with Scott A. Kramer, LCSW-R, who is a crew member of the “Pos Peds.” Scott explained that Pos Peds is a larger organization that includes riders and crew from many different rides and walks of life. Pos Peds are riders or crew living with HIV that participate in the ride. They can choose to display the Pos Peds flag or not, it doesn’t matter. It gives people a sense of belonging. As a crew member, the preparation for the ride, in addition to fundraising, provides a creative outlet. If someone is on the crew at a rejuvenation station or lunch stop, they can figure out a fun theme for their station so when riders come through, it can be a fun experience. Scott continued, “The experience for a crew person is amazing. I was assigned to a lunch stop and I was also the Emotional Fitness Coach. I felt like I was really helping the riders and crew! It was empowering because I knew that I was not only helping people get through the ride emotionally, but also

helping them through physically—making sure they were hydrating, wearing their helmet as they rode on, etc. It’s amazing to hear stories of what the riders were experiencing on the road, why they were on the ride, and what they do in everyday life. Waking up at 4:30 am was not easy, but that was okay because I knew the day would be invigorating and wonderful. I felt like I was part of a special family that comes together once a year and does something extraordinary.” I asked Scott, from a mental health perspective, why is taking part in an event like this helpful, important and empowering? He replied, “Taking part in a ride like this gives a sense of belonging and a sense of doing something good for a cause. It also feels empowering to be a part of this larger group that people see once a year. A shared experience creates a real sense of bonding and strength. This can carry people throughout the rest of the year and that’s why people keep coming back. It also forms a community and this helps people feel less isolated, less lonely, and more connected with others in a way that doesn’t happen in the everyday routine.” For me, participating in this event in such a hands-on way and lending my skills to support the cyclists and other crew members is an uplifting and empowering experience that challenges my body, fosters my spirit and clarifies my mind. With every stretch I provide to an aching cyclist and with every stroke of a taut muscle belonging to a crew member, it does my heart and soul good to know that I, in my own simple way, am providing a service and support that helps these unparalleled people to rise, shine and wage their own battle, in their own way, another day. Collectively, these types of experiences serve to address ourselves from a whole perspective and contribute to our whole wellness. After a lengthy career in the arts and LGBT activism, Robert Zukowski pursued his goal of a career in complementary and alternative healthcare. He is a New York State licensed Massage Therapist, a Certified Medical Massage Therapist and is certified by the National Certification Board for Therapeutic Massage and Bodywork. In addition to his hands-on work, he is a writer and lecturer in the field of therapeutic massage therapy. A&U • NOVEMBER 2015

Switching Up

IV treatment satisfaction for patients has been increasingly measured in a formal way over the years. Quality-of-life assessments—such as ease of use—have become part of the treatment paradigm, whether as part of a doctor’s visit, treatment education, or clinical study. Treatment efficacy is still key, but researchers, physicians, and patients know that patient’s quality of life is directly related to adherence and lifestyle choices based on mental health, among other concerns. In short, improved quality of life leads to better health outcomes, according to studies. Individuals living with HIV/AIDS and on treatment have always assessed their degree of satisfication with a particular regimen. In the early days of AZT and even throughout the HAART era, patients have sometimes rejected treatment altogether or have delayed treatment for fear of possible quality-of-life game-changers like less-thanbearable side effects. During the first years of HIV treatment, it was an either/ or decision. Either you take the meds, or you don’t. Not much of a choice. And, back then, we were still in an era when one didn’t complain about quality-of-life aspects of the treatment. You were expected to buck up and literally “take your medicine.” If you did complain, you might be called a “whiner.” There was a proper way to be a patient, immortalized in plenty of movies about diseases—brave, stoic, obedient. The self-empowerment movement for people living with HIV/AIDS helped to change that approach. The Denver Principles were established, in part, to advocate for individuals living with HIV/AIDS to “choose or refuse their treatment modalities.” The implication here is that this choice should not be judged by others, or be made under duress from outside pressure to be a “good” patient. One needed to make the choice oneself, with as much knowledge about treatment options as possible. Empowerment.

The early AIDS activists and advocates didn’t simply demand treatments for AIDS-related conditions and controlling the virus, they demanded better treatments, the best treatments. Importantly, they demanded choice because they realized that HIV meds were not one-sizefits-all; as we came to learn, HIV meds could interact with different bodies and resistance-mutated viruses differently. Another consideration in the combination antiretroviral therapy era was drug-drug interaction, coinfections, and individual risk for comorbidities like cardiovascular disease or liver disease. Nowadays, in an era of six different classes of HIV meds, long-established efficacy profiles, and next-generation research and development, choice has expanded. And the treatment landscape has changed such that one can consider switching regimens even when one’s current regimen has been working to successfully suppress one’s virus based on treatment satisfaction. AIDSinfo, a service of the U.S. Department of Health and Human Services (HHS), has mapped out the reasons to consider switching regimens when virally suppressed. These include: • considerations of reducing cost • the optimal use of antiretrovirals during pregnancy or if one becomes pregnant • minimizing or addressing drug interaction concerns • changing food or fluid requirements

• avoiding parenteral administration, • enhancing tolerability and decreasing short-term or long-term toxicity • simplifying a regimen by reducing the number of pills one must take or reducing how often one must take them, with an eye toward improving adherence. Note that some of these considerations are related, at least in part, to quality of life. And if you are a virally suppressed treatment-experienced patient with a history of multidrug resistance, switching to a regimen with less of a pill burden and not-as-frequent dosing, and/or a side effect profile that is better for you than your current regimen, may be the best strategy. Of course, one should always be screened for sensitivity to resistance and other factors before making a switch. Switching regimens while virally suppressed can be successful, but it can also not work. Some researchers have pointed out that treatment failure A&U • NOVEMBER 2015

illustrations by Timothy J. Haines

options for switching have expanded for patients who have achieved viral suppression

may be a reality. You may find that your new regimen does not suppress the virus, or suppress the virus as well as the past regimen, and that drug-resistant mutations have emerged. In this context, treatment can be become more laborious and more expensive. However, there are ways to navigate this process to obtain the best health outcome possible. One should only make a switch in consultation with a trusted clinician, preferably an HIV specialist. On the clinical research side, study organizers have incorporated the HIV Treatment Satisfaction Questionnaire (HIVTSQ) with increasing regularity both in trials for treatment-experienced and treatment-naive patients. The HIV questionnaire was adapted from the Diabetes Treatment Satisfaction Questionnaire, which has been around at least since the early 1980s. Indeed, the questionnaire has been developed to measure psychological well-being, ease of use, and satisfaction for the treatment of diseases and conditions such as chronic kidney failure, genital herpes, and hypothyroidism, among others. The HIVTSQ has been refined over the years, as well. The ten questions cover qualitative data, phenomenon that can be assessed by oneself but not measured by an outside observer. Respondents select from a Likert scale, whose terms are based on the aim of the question. For example, for questions measuring “satisfaction,” the range is very satisfied (6) to very dissatisfied (0). Other terms—convenient, flexible, yes/no, and so on—are inserted for differently formuated questions. The instructions change based on whether or not the researcher is interested in a current treatment regimen or a comparison/ contrast between two regimens, as well as changes in satisfaction over time. How satisfied were you with your current treatment? How well controlled do you feel your HIV has been recently? How satisfied are you with any side effects of your present treatment? How satisfied are you with the deNOVEMBER 2015 • A&U

mands made by your present treatment? How convenient have you been finding your treatment to be recently? How flexible have you been finding your treatment to be recently? How satisfied were you with your understanding of your HIV? How satisfied are you with the extent to which the treatment fits into your lifestyle? Would you recommend your present treatment to someone else with HIV? How satisfied would you be to continue with your present form of treatment? The HIVTSQ may be useful when

one is considering switching regimens, especially when one regimen may be non-inferior to another. For example, twenty-four-week data from the STRIIVING study, which incorporated the HIVTSQ in its methodology, illuminates one possible switch that may be available to patients. STRIIVING is a Phase IIIb/IV randomized, open-label study across multiple sites in North America that is assessing the efficacy, safety and tolerability of switching from an antiretroviral regimen to once-daily, fixed-dose abacavir/dolutegravir/lamivudine (Triumeq, from ViiV Healthcare) in patients whose HIV-1 virus has been suppressed. In order to reproduce a real-world clinical context, patients who were enrolled in the study were switching from a broad range of protease inhibitor, integrase strand transfer inhibitor and non-nucleoside reverse transcriptase inhibitor-based regimens. The FDA approved Triumeq based primarily on treatment-naive study

results that showed greater efficacy compared with those taking efavirenz/ tenofovir/emtricitabine tablet once daily— the median time of achieving viral suppression was shorter, CD4 cell counts had bigger increases, and more individuals achieved a viral load below 50 copies/mL. The regimen’s safety profile was better as well; indeed, many in the non-Triumeq arm discontinued because of side effects. Overall, the most serious adverse events related to Triumeq include allergic reactions, lactic acidosis, and liver problems. In September, the STRIIVING study released data that showed that suppression was non-inferior for those who switched to abacavir/ dolutegravir/lamivudine, showing the single-tablet Triumeq to be well tolerated and effective. There were no patients who had protocol-defined virologic failure, so none of the enrollees were evaluated for treatment-emergent resistance in either arm. Those enrollees who had switched and subsequently discontinued the regimen because of adverse events were reported to have low-grade ones, the most commone ones being: cough (five percent), diarrhea (seven percent), fatigue (seven percent, headache (five percent), nausea (ten percent), and upper respiratory tract infection (seven percent). The same adverse event profile observed in the STRIIVING study is similar to previous studies of dolutegravir-based regimens. In terms of measuring treatment satisfaction, overall treatment satisfaction was similar for both groups at baseline. However, at twenty-four weeks, patients switching to abacavir/dolutegravir/lamivudine reported significantly greater improvements in how satisfied they were with their new regimen, including overall treatment satsifaction, lifestyle/ ease of use, and general/clinical. Chael Needle wrote about new WHO recommendations to meet prevention and treatment goals in the October issue.

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E R U CULT S THE

AID OF

BOOKS

I’ll Never Write My Memoirs Grace Jones, with Paul Morley Gallery Books/Simon & Schuster

race Jones likes doing jigsaw puzzles, as we learn in her new memoir I’ll Never Write My Memoirs, its title culled from lyrics to her song, “Art Groupie.” Jigsaw puzzles, like watching tennis matches, are one of her off-stage obsessions. She will stay up all night sometimes to finish them; they are a go-to when she needs a bolt of inspiration about a project she is trying to complete. It’s a startlingly mundane detail, but one she shares in an effort to separate her public persona from her private life. Both are “her,” but that she is outrageous as a performer and very normal at home is a point often lost on others, including, sometimes, the men she has dated, who want to freeze her in one of her minimalist poses. She resists being reified, being turned into a thing, from an early age struggling against who the world expects her to be. What comes to the fore in her stunning and vibrant memoir is that she contains a multitude of selves, ones that she fashions and refashions, setting up house within and migrating from that which binds her, as is evidenced by her self-styled iconic look as a Wilhemina model: “My shaved head made me look more abstract, less tied to a specific race or sex or tribe, but was also a way of moving across those things, belonging while at the same time not belonging. I was black, but not black, woman, but not woman; American, but Jamaican; African, but science fiction.” Under the religious thumb of relatives in whose care she and her siblings were left as her mother and father went on ahead, moving from Spanish Town, Jamaica, to America, Grace started to only truly break free once she was reunited with her parents in Syracuse and had the NOVEMBER 2015 • A&U

freedom to explore who she might become—teacher? singer? model? actress? performance artist? jigsaw puzzle completist? Jigsaw puzzles are a process, and that’s her point. So is art. So is living. Like everyone else, she is just another human being in the process of becoming, embodying a unique perspective. Unlike everyone else, she is able to express that unique perspective in continuously creative ways. About her approach to performing new material alongside the old hits, she writes: “I am not going to keep repeating myself without introducing where I have moved to now, visually and musically, which will connect with where I have been, and with where I am going. There are still missing pieces of this jigsaw puzzle to find. I’m still planning my next assault.” The memoir itself is a jigsaw puzzle, each moment mused over and placed where it connects to four other pieces. Each moment is a small dash of color, some odd angles, and retains the mystery that Jones helps cultivate as part of her art, yet each moment speaks to the bigger picture. That’s part of her manifesto, as the reader finds out. Whether Grace is walking the runway as part of an Issey Miyake show, finding new voices for new rhythms as she moved from disco to post-punk and beyond, designing her look for A View to a Kill, directing the video for her song “I’m Not Perfect (But I’m Perfect for You),” dueting with Pavarotti, or performing “Slave to the Rhythm” while hula-hooping at the Queen’s Diamond Jubilee concert, she is dedicated to maintaining the integrity of the whole. It’s a portrait of artistic empowerment—how to hold onto your underground roots amid pressures to go mainstream; how to claim creative control in the face of corporate cannibals; how to create images when those images can be appropriated by others for their own purposes. The memoir, one of the more insightful ones I’ve read of late, is more critical self-reflection than a tell-all. I’m not sure Grace Jones would need to write anything of that sort—she has already told all about her life, or, at least, what she wants to share with us, through her music, her performances, her videos, her images, her style, her public life. With collaborators along the way, among them Chris Blackwell, Andy Warhol, JeanPaul Goude, Trevor Horn, and Ivor Guest, she has lived a life immersed in art, she has created art immersed in life, always eschewing selling out in favor of the beautiful truths and fictions of authenticity. Along the way, the reader is swept up in

a more-or-less straightforward chronology, accompanying her as she gal-pals around Paris with fellow models and roommates, Jerry Hall and Jessica Lange; smokes cigars with “Arnie” Schwarzenegger; enjoys motherhood and grandmotherhood; and rediscovers, later in life, a Jamaica that she can call home. By the time she arrives at the onset of the AIDS epidemic and its subsequent devastation of the arts communities dear to her heart, one cannot help but see what she sees, mourn what she mourns. Artists like herself—stopped dead in their tracks. The creative momentum that built through the seventies and flourished in the eighties—stopped dead in its tracks. Sexual liberation and gender play—stopped dead in its tracks. The steadfast AIDS advocate (Grace has lent her support and talent to the Elton John AIDS Foundation and amfAR, among other organizations) writes touchingly and honestly about losing friends to AIDS-related causes, focusing in on three friends: Keith Haring, Tina Chow, and Angelo Colon, her film double. She understands that she could have easily been counted among the dead, and planned on being the next to die—until she wasn’t, and continued on as a survivor, remembering, paying tribute, an unexpected witness, the artist turned historian. —Chael Needle Chael Needle is Managing Editor of A&U.

A Calendar of Events

IFFA: Design Industries Foundation Fighting AIDS (DIFFA) will open a pop-up shop in New York City in time for holiday shopping. From December 2–6, DIFFA’s Gift for Life Holiday Pop-Up Shop will open its doors within the Siegel-Stockman Showroom in Manhattan’s Chelsea neighborhood. Open to the public, the pop-up shop will offer products donated by industry suppliers. The pop-up shop design is the result of a timed competition among five teams of talented students from top New York design schools at the annual “Iron Design” Student Challenge hosted by Retail Design Institute New York Chapter (RDI). Teams were mentored and coached by professionals from design firms and retail brands, including representatives of TPG Architecture, Gensler, Lord & Taylor, and Kenneth Cole, to name a few. Judges included Johanna Osburn, executive director of DIFFA, and Peter Tolin-Baker, president of Retail Design Institute of New York and principal at PTB Design, among others. “Team Orange,” made up of students

from Fashion Institute of Technology and LIM College, took home the “Best Design” Award for translating the AIDS-focused mission and message of DIFFA into a vibrant and engaging pop-up store concept and window display. Through the power and creativity of members of the design industries and its partners, DIFFA raises AIDS awareness and raises funds for grants to organizations dedicated to providing treatment and direct care services for people living with or impacted by the disease, offers prevention eduction to communities at risk, and supports public policy initiatives. Sales will benefit DIFFA and Gift for Life, a non-profit that brings together the gift and home industries against AIDS. Date: December 2–6; pop-up shop hours: 9 a.m.–5 p.m.; location: Siegel-Stockman Showroom, 126 West 25th Street, New York, New York. For more information, visit www.retaildesigninstitute.org, www. diffa.org and www.giftforlife.org.

A&U • NOVEMBER 2015

NOVEMBER 2015 • A&U

Survival Guide

[a portrait by sean black]

Jim DeTore, Jr. “Turn your shame into strength. Focus your anger into activism. Heal your own pain by advocating for yourself and your community.”

Out of stigma and shame, Jim DeTore hid his diagnosis from friends and family for six years when his partner died, but he also hid it to shield them from experiencing the pain he endured. Since that time in the early eighties, he has wrestled with illness, addiction, depression, and the red tape that living with AIDS entails while watching many of his friends pass, wondering each time if he would be next. Today, having found his inner activist voice, Jim helps those who are fighting the same war. He’s found strength and peace in co-facilitating a group called LetsKickAss.org, which brings together men and women who also identify as long-term survivors dealing with AIDS Survivors Syndrome. In turn, it has helped him with his own struggle with anger, guilt and anxiety. Sean Black is a Senior Editor of A&U. 72

A&U • NOVEMBER 2015

YOU CAN LIVE A HEALTHY LIFE WITH HIV. TREATMENT HELPS MAKE IT POSSIBLE.

WE KNOW HIV/AIDS medication therapy But we also know you want a pharmacy that cares for the whole you. That’s why the pharmacists at our HIV-specialized pharmacies offer complete, compassionate care for your individual needs now and in the years ahead. You can rely on us to provide services such as: • Expert guidance in managing HIV, combined with other conditions you may have • A range of immunizations to help you avoid illness*

To learn more, visit HIV.Walgreens.com. * Vaccines subject to availability. Not all vaccines available in all locations. State-, age- and health-related restrictions may apply.

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