DECEMBER 2015 • ISSUE 254 • AMERICA’S AIDS MAGAZINE
GETTY THE AIDS ADVOCATE BRINGS JOY TO THE WORLD
walking on sunshine
ANDREA JOHNSON FIGHTS STIGMA WITH A POSITIVE PHOTO CAMPAIGN
METHOD OF MODERN LOVE
DAMON L. JACOBS WANTS YOU TO HAVE THE FACTS ABOUT PrEP
New Genvoya is now available
Onepill pill contains One contains elvitegravir, cobicistat, emtricitabine, elvitegravir, cobicistat, emtricitabine, and tenofovir (TAF). and tenofoviralafenamide alafenamide (TAF). Ask your healthcare provider Ask your healthcare provider if GENVOYA is right for you.
if GENVOYA is right for you. To learn more visit GENVOYA.com To learn more visit
Please see Brief Summary of Patient Information with important warnings on the following pages.
Brief Summary of Patient Information about GENVOYA GENVOYA (jen-VOY-uh) (elvitegravir, cobicistat, emtricitabine, and tenofovir alafenamide) tablets Important: Ask your healthcare provider or pharmacist about medicines that should not be taken with GENVOYA. There may be new information about GENVOYA. This information is only a summary and 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 GENVOYA? GENVOYA can cause serious side effects, including: • Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis may happen in some people who take GENVOYA. 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 have 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 may happen in people who take GENVOYA. In some cases, these liver problems can lead to death. Your liver may become large and you may develop fat in your liver. 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 GENVOYA for a long time. • Worsening of Hepatitis B infection. GENVOYA is not for use to treat chronic hepatitis B virus (HBV). If you have HBV infection and take GENVOYA, your HBV may get worse (ﬂare-up) if you stop taking GENVOYA. A “ﬂare-up” is when your HBV infection suddenly returns in a worse way than before. • Do not run out of GENVOYA. Reﬁll your prescription or talk to your healthcare provider before your GENVOYA is all gone. • Do not stop taking GENVOYA without ﬁrst talking to your healthcare provider. • If you stop taking GENVOYA, 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 GENVOYA.
What is GENVOYA? GENVOYA is a prescription medicine that is used without other HIV-1 medicines to treat HIV-1 in people 12 years of age and older: • who have not received HIV-1 medicines in the past or • to replace their current HIV-1 medicines in people who have been on the same HIV-1 medicines for at least 6 months, have an amount of HIV-1 in their blood (“viral load”) that is less than 50 copies/mL, and have never failed past HIV-1 treatment HIV-1 is the virus that causes AIDS. GENVOYA contains the prescription medicines elvitegravir (VITEKTA®), cobicistat (TYBOST®), emtricitabine (EMTRIVA®) and tenofovir alafenamide. It is not known if GENVOYA is safe and effective in children under 12 years of age. When used to treat HIV-1 infection, GENVOYA may: • Reduce the amount of HIV-1 in your blood. This is called “viral load”. • Increase 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). GENVOYA does not cure HIV-1 infection or AIDS. You must stay on continuous HIV-1 therapy 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 safer 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 about how to prevent passing HIV-1 to other people.
Who should not take GENVOYA? Do not take GENVOYA if you also take a medicine that contains: • alfuzosin hydrochloride (Uroxatral®) • carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®) • cisapride (Propulsid®, Propulsid Quicksolv®) • 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®) • lovastatin (Advicor®, Altoprev®, Mevacor®) • midazolam, when taken by mouth • phenobarbital (Luminal®) • phenytoin (Dilantin®, Phenytek®) • 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 or a product that contains St. John’s wort
What should I tell my healthcare provider before taking GENVOYA? Before taking GENVOYA, tell your healthcare provider if you: • have liver problems including hepatitis B infection • have kidney or bone problems • have any other medical conditions • are pregnant or plan to become pregnant. It is not known if GENVOYA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking GENVOYA. Pregnancy registry: there is a pregnancy registry for women who take HIV-1 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. • are breastfeeding or plan to breastfeed. Do not breastfeed if you take GENVOYA. – You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. – At least one of the medicines in GENVOYA can pass to your baby in your breast milk. It is not known if the other medicines in GENVOYA 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. Other medicines may affect how GENVOYA works. Some medicines may interact with GENVOYA. Keep a list of your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. • You can ask your healthcare provider or pharmacist for a list of medicines that interact with GENVOYA. • Do not start a new medicine without telling your healthcare provider. Your healthcare provider can tell you if it is safe to take GENVOYA with other medicines.
How should I take GENVOYA?
• Take GENVOYA exactly as your healthcare provider tells • • • • • • •
you to take it. GENVOYA is taken by itself (not with other HIV-1 medicines) to treat HIV-1 infection. GENVOYA is usually taken 1 time each day. Take GENVOYA with food. If you need to take a medicine for indigestion (antacid) that contains aluminum and magnesium hydroxide or calcium carbonate during treatment with GENVOYA, take it at least 2 hours before or after you take GENVOYA. Do not change your dose or stop taking GENVOYA without ﬁrst talking with your healthcare provider. Stay under a healthcare provider’s care when taking GENVOYA. Do not miss a dose of GENVOYA. If you take too much GENVOYA, call your healthcare provider or go to the nearest hospital emergency room right away. When your GENVOYA supply starts to run low, get more from your healthcare provider or pharmacy. This is very important because the amount of virus in your blood may increase if the medicine is stopped for even a short time. The virus may develop resistance to GENVOYA and become harder to treat.
What are the possible side effects of GENVOYA? GENVOYA may cause serious side effects, including: • See “What is the most important information I should know about GENVOYA?” • 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. • 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 GENVOYA. Your healthcare provider may tell you to stop taking GENVOYA if you develop new or worse kidney problems. • Bone problems can happen in some people who take GENVOYA. Bone problems may include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. The most common side effect of GENVOYA is nausea. 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 GENVOYA. For more information, ask your healthcare provider or pharmacist. • Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
General information about the safe and effective use of GENVOYA. Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaﬂet. Do not use GENVOYA for a condition for which it was not prescribed. Do not give GENVOYA to other people, even if they have the same symptoms you have. It may harm them. This Brief Summary summarizes the most important information about GENVOYA. If you would like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about GENVOYA that is written for health professionals. For more information, call 1-800-445-3235 or go to www.GENVOYA.com. Keep GENVOYA and all medicines out of reach of children. Issued: November 2015
EMTRIVA, GENVOYA, the GENVOYA Logo, GILEAD, the GILEAD Logo, GSI, TYBOST, and VITEKA 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. GENC0001 11/15
c o n t e n t s December 2015
38 Cover Advocate Aileen Getty Talks to A&U’s Dann Dulin About Her Journey of Healing, What She Learned About Leadership from Elizabeth Taylor & Her Steadfast Commitment to the Cause
Features 30 Gallery Avram Finkelstein Is Still Acting Up 34 I Want to See U Be Brave Andrea Johnson Launches Red, White & U, a Photo Campaign That Aims to Empower
44 Shimmer, Sparkle & Shine The DIVA Foundation and amfAR Create Red Carpet Buzz to Raise Awareness & Funds
Our Story, Our Time
TYing It All Together
48 PrEP Pioneer Damon L. Jacobs Separates Prevention Fact from Fiction
50 On the Road The Cincinnati Exchange Project Offers Help & Harm Reduction 28 Fiction Almost by John Whittier Treat cover by Sean Black
The Culture of AIDS
We Are the Warriors
isclosure. First actor Danny Pintauro disclosed he was living with HIV. Now Charlie Sheen. It’s an odd word—“disclosure.” It seems so official, so legalistic. Don’t lawyers “disclose” evidence? The word seems unnecessarily linked to law and order, as if living with HIV was evidence of a criminal act. Judging from comments on social media and some of the tabloid headlines, many still think of living with HIV as some sort of crime. Charlie Sheen had barely ended his interview with Today’s Matt Lauer before people jumped on the fear-and-loathing bandwagon. Jenny McCarthy, who played one of Sheen’s character’s girlfriends on Two and a Half Men, thought he should have been contractually obligated to disclose his serostatus to his on-screen partners. (Remember the hysteria around Rock Hudson having kissed Linda Evans on Dynasty? Have we learned anything in thirty years?) And here’s one pearl of wisdom from someone on Twitter: “Will they put Charlie Sheen in jail for attempted murder? Another Hollywood ‘star’ who gets to live by different rules.” People blasted: “Charlie Sheen Is HIV-Positive—Could His Exes Sue Him?” Apparently six of them plan to do so—emotional stress, fraud, and sexual battery are the charges being floated. How revealing that an HIV “disclosure” is quickly followed with threats of punishment. For Sheen’s part, he claims to have disclosed his positive status to all of his partners before any sexual activity took place. In fact, some of the people to whom he disclosed reportedly returned the favor by blackmailing him for millions. The real crime is the silencing that AIDSphobic individuals foist on those of us who are positive. The real crime is the stigma that prevents individuals from getting tested or engaging in care. The real crime is the criminalization of individuals living with HIV based on old and faulty science. The real crime is that, amid all of the animus that animated the frenzied conversations after Sheen’s disclosure, the point that Charlie is undetectable and therefore non-infectious might have gotten lost. Thankfully, advocates were quick to
A M E R I C A’ S A I D S M A G A Z I N E issue 254 vol. 24 no. 12 December 2015 editorial offices: (518) 426-9010 fax: (518) 436-5354
take up his story as a teachable moment. With adherence to the right regimen of antiretrovirals, an individual can suppress the virus. It’s almost impossible to transmit the virus when undetectable. It’s very possible for someone who is positive to live nearly as long as someone who is negative. But that means staying on top of one’s health and taking advantage of the medications. That’s some kind of justice. But we deserve something more than a better quality of life—we deserve a better quality of humanity. We deserve an emotionally supportive environment. We deserve to be treated with dignity and respect. We deserve to have our basic needs met. We deserve a world that welcomes us as the warriors we are. Aileen Getty is one such warrior. In our cover story, the advocate (no stranger to tabloid hate) tells A&U’s Dann Dulin about what she has learned through her struggles: “You are enough. At all times preserve what’s authentic within you! We have the freedom to change our minds so long as we stay truthful.” I hope everyone in America and around the world reads her story and starts the healing process, or is emboldened to continue their healing process. Now that I think about it, this World AIDS Day issue is teeming with warriors. Our Gallery features Avram Finkelstein, who helped us see that “Silence = Death.” Chael Needle interviews Andrea Johnson, a woman living with HIV and advocate who has asked other women to step forward, bravely, and show the world that living with HIV does not mean we stop living. And Chip Alfred interviews Damon L. Jacobs, a PrEP warrior intent on educating the masses about this new prevention tool. Shooting at the walls of heartache, we are the warriors. Heart to heart we’ll win.
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: Tyeshia Alston, Noël Alumit, V. Anderson, Heather Arculeo, Larry Buhl, Ruby Comer, Diane Goettel, Sally Hessney, George M. Johnson, Angela Leroux-Lindsey, 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, 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 Nancy Ellegate, 1959–2015 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
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x o b l i ma
All Fired Up I had heard of Gilles Marini, but I thought he was just another Hollywood hunk [cover story, “French Kiss,” by Sean Black, October 2015]. I was surprised that he was a firefighter in France and that he has a conscience. He learned about AIDS from his job. He said something very touching: “I heard a number of stories from my fellow firefighters at the time about when they would arrive at an accident with an injured person [with AIDS] and that person would admit to feeling ashamed and worry that the firefighters wouldn’t attend to their injuries. It was absolutely heartbreaking. We knew so little back then.” I think Gilles is still a firefighter at heart. —Jasmine Roque Shreveport, Louisiana
Your cover story just blew me away! Where did you find this great looking guy? This guy is just amazing; he has definitely star quality and I think he is going to make it on the big screen. He was a firefighter, so I was thinking: If I start a fire, will he come rescue me?! This cover was one of your best ever. —Jennifer Van Shochten Dennisport, Massachusetts
Age Is Just a Number I loved your profile on Jane Fowler [Ruby’s Rap, October 2015]. It’s rare that I
read anything about older people who are living with HIV. I’m glad she is using her voice to educate and empower. I only hope I have that much energy when I am her age! —Linda Sorentino White Plains, New York
Too Close for Comfort I was afraid to look at your piece on photographer J. Tomás López and all those faces of people I just know have passed away [Gallery, October 2015]. I just found it too emotionally draining and sad. I lived
through that period and I have lots of memories of friends that died. I mean, it is really hard to look the pandemic in the eye. Just sometimes you want to just close your eyes and never look again, but that may just be me and the way that I respond. Other people may look and see something totally different. Anyway, a very moving article. Thank you. —Mary Jane Hovachek Butte, Montana Send e-mail to: email@example.com 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 • DECEMBER 2015
photo by Sean Black
“Gilles Marini said something very touching: ‘I heard a number of stories from my fellow firefighters at the time about when they would arrive at an accident with an injured person [with AIDS] and that person would admit to feeling ashamed and worry that the firefighters wouldn’t attend to their injuries. It was absolutely heartbreaking. We knew so little back then.’”
NEWSBREAK In Memoriam We are mourning the loss of Nancy Ellegate, a longtime contributor to A&U, who died suddenly on September 27. Completing her undergraduate and masterâ€™s degrees at McGill University, she went on to work at Interfaith Partnership for the Homeless and then became a senior acquisitions editor at SUNY Press in Albany, working there for twenty-six years. As an editor for SUNY Press, she introduced the reading public to significant titles from the fields of religious studies and Asian studies, among others, and, as a writer for A&U, focusing mostly on book and movie reviews for over twelve years, she introduced readers to a broad range of work, from documentaries to novels, with an inimitable, sterling style that drew on her vast knowledge of history, politics, religion, and culture. She was particularly, and unsurprisingly, adept at showing how academic titles added to our current conversations around HIV and AIDS, cutting to the heart of the matter to keep it beating. Like many, she had been deeply affected by the AIDS pandemic, and sought to provide support and advocacy for her friends who were positive. Her sweetness, humor, and generous spirit will be missed. Nancy is survived by her beloved friend, Jeffrey Decker of Albany, as well as many friends, relatives, and colleagues. She had arranged for memorial contributions to be made to Interfaith Partnership for the Homeless.
photo by Jamesfranklin.net
Blue Ribbon Boys Launched on November 23 in time for World AIDS Day, a new, progressive, and sex-positive campaign called Blue Ribbon Boys will engage men who have sex with men of all serostatuses in an effort to raise awareness about HIV and sexual health. MSMGF (The Global Forum on MSM & HIV), the largest global, advocacy network focused on HIV among men who have sex with men (MSM), is partnering with popular gay social app Hornet for the largest targeted, global HIV viral suppression campaign to date, reaching over 7 million MSM. Blue Ribbon Boys is aligned with CDC and WHO guidelines and builds on the missions of both MSMGF and Hornet, which, in part, seek to help positive individuals access ARTs so that they may engage in care as early as possible, and encourage widespread access and education about PrEP among negative men. Drawing on the blue color of the pill used for PrEP and red-ribbon awareness, the ultimate goal of the campaign is HIV viral suppression across all communities worldwide. The BRB campaign is excited to be able to reach MSM in low and middle-income countries where barriers to care may exist but smart-phone use is popular, especially among young MSM, who at high risk for contracting HIV. Via the app, the campaign will elicit all Hornet users to answer a short survey about their sexual health, touching on HIV and STI testing, antiretroviral treatment, PrEP, viral load, disclosure, stigma, condom and lubricant use, DECEMBER 2015 â€˘ A&U
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A&U • NOVEMBER 2015
and other prevention methods. If their answers reveal a personal commitment to sexual health, they will be awarded a blue ribbon icon on their profile photo regardless of their HIV status, which is kept confidential. And so that the campaign doesn’t leave anyone behind, those who are not yet blue-ribbon-ready will receive judgment-free tips about ways to protect and improve their sexual health, such as regular testing, early and consistent use of ART, and up-t0-date information about local resources and services, among other information. Answers will be updated every three months in order to help app users stay on track and award new blue ribbons. “Blue Ribbon Boys is important because it includes all men who have sex with men in the conversation about global HIV suppression, irrespective of HIV status. If we are going to curb the HIV epidemic, all of us have to participate. The responsibility is not just with HIV-positive guys as it has traditionally been framed,” says Jack Mackenroth, Senior Communications Officer, MSMGF. If Hornet users find that they do not have access to treatment and prevention services, the campaign will invite them to take action by signing two global petitions calling for access to PrEP for negative men and access to antiretroviral medications for positive men. As the campaign progresses, it will change and adapt as treatment and prevention methods improve and become available in different regions. For more information about Blue Ribbon Boys, log on to: www.BlueRibbonBoys.org. As a special incentive to participate in BRB, Hornet is giving away free premium memberships to new users who sign up using this link http://hrnt.it/blueribbonboys during December. For more information about Hornet, log on to: www.hornetapp.com. For more information about MSMGF, log on to: www.msmgf.org.
holiday photo by Sean Black; model photo courtesy DAA
Designers Against AIDS Designers Against AIDS (DAA) was launched in 2004 by the non-profit organization Beauty Without Irony to raise public awareness about AIDS in the international sphere. Specifically targeting young people in industrialized countries, DAA aims to quell the increasingly high rates of HIV infection due to a lack of preventative resources through trendy, stylish and eye-catching product campaigns. DAA skillfully engages its target audience by drawing on elements from pop culture such as music, fashion, design, arts, sports and film. DAA has conceptualized and collaborated with leading fashion retailers like H&M in their five global Fashion Against AIDS campaigns. Over the years DAA has collaborated with some of the world’s most acclaimed musicians and fashion designers, such as Timbaland, Katy Perry, Pharrell Williams, Keri Hilson [A&U, August 2013], Cyndi Lauper [A&U, June 2010], Robyn and Rihanna. When it comes to striking up intimate dialogue and HIV, DAA invites you to think outside of the box by getting into their boxers (or panties) this holiday season. Made Fair Trade from certified organic cotton DAA’s printed boxer shorts are one of their most successful designs! These boxer shorts emblazoned with red and black ribbons have short legs and the trendy DAA logo printed on a comfortable elastic waistband. Boxers are available in sizes S, M, L, and XL. How Much: 20 EUR. Additionally, DAA offers panties by the late Dutch designer Percy Irausquin who created the festive print of a fashionista sporting a black evening dress subtly featuring the red AIDS ribbon. The briefs have a high cut leg and reveal the DAA textile label. These comfy must-haves are also made Fair Trade from certified organic cotton by Sense Organics in India. Panties are available in sizes XS and S. How Much: 15 EUR. All sale proceeds benefit Designers against AIDS. You can see more items (underwear, T-shirts, high fashion clothes and accessories, handmade garments and bags from India…all donated to DAA by designers, fashion houses and private people) here: designersagainstaids. tictail.com. To go behind the scenes with DAA’s latest campaign with Belgium top models Yumi Lambert and Cesar Casier for European retailer JBC go to: https://www.jbc.be/nl/yumiandcesar-behindthescenes. DECEMBER 2015 • A&U
overlooking the neon red, green, and blue buildings of the Pacific Design Centers and the scenic peaceful Hollywood Hills. We stand marveling at the view. Ruby Comer: Whata…gorgeous…day. [Sharon nods, with a sigh.] My body and my soul, I’m so glad I’m here because I never heard of Purifoy. Where have I been?! What an inspiration! Say, tell me Sharon— Sharon Omi: [She interrupts.] Ruby, I have to tell you. You inspired me! [I look at her with a doubting frown.] After our initial phone contact, I realized that I have not done enough for the AIDS community, so last week I volunteered for the Venice Family Clinic at Common Ground. Well, wackadoo! You are something Ms. Omi. [I lean in on the red railing and look at her directly.] Personally, Sharon, who has affected you the most in the epidemic? My friend Rodney Kageyama. He was my first acting teacher in San Francisco, who now lives in L.A. and who I hang with as much as possible! He has been living with HIV for years. He has a host of health issues but stays on top of them all. He manages to live with zest and energy, and is the unofficial mayor of Little Tokyo. He also emcees Japanese-American events, large and small. Sounds like an enchanting fellow. Did you lose anyone early on? Sadly, yes. My beautiful friend Raymond Tasco died in October of 1986. Losing him to AIDS had a huge impact on my husband and I. We knew Raymond for years and when he was in need of a roommate I suggested my then-boyfriend—now husband—move in. Raymond lived with a houseful of gay black actor/directors who had started the Lorraine Hansberry Theatre in S.F. That was a house full of theater! [She giggles.] People doing performance art in the backyard, rehearsals
happening in the living room, and lots of cast parties. How stimulating and full of life. Shortly after my husband moved in, Raymond started to get sick. He was always battling a cold and a cough. He’d get sick, recover, and then get sick again. Then he started to lose a lot of weight. We were just starting to hear about the “gay cancer.” Raymond was sure that he didn’t have it, and he convinced us that he was fine. My Lordie, what happened? Details please. Oh, Ruby, it was terrifying. There was a big party for his fortieth birthday, which must have been in 1985. That was when I got really scared. We watched him shrink and lose control of his bowels. Then he contracted pneumonia. We were all actors, and no one had any money, and it quickly became very clear that Raymond had to have someone to care for him twenty-four hours a day. How frightful. We were so scared. Towards the end A&U • DECEMBER 2015
Ruby illustration by Davidd Batalon; photo by Bader Bauer
fter screening the tender film, Eat With Me, and witnessing Sharon Omi’s stunning portrayal of the distraught mother going through crisis, I was intent on connecting with this talented lady. (George Takei, Teddy Chen Culver, Nicole Sullivan, and Aidan Bristow costar.) Lordie be, after some snappy detective work, I found that she lived just across town from me in the beachfront free-spirited community of Venice, California. Doing my homework, I discovered that Sharon is a third-generation Japanese-American, also known as “Sansei.” She’s been married for twenty-eight years to an actor/writer and they have a twentyfour-year-old daughter who is also a writer. Ms. Omi is an accomplished character actor who has racked up many credits in theater, film and television. On the big screen she appeared in Prom and Spiderman 3, while on the tube she’s co-starred on Modern Family and The Big Bang Theory. In her new film, Family Gathering, Sharon co-stars with her husband, Ken. This woman was at Ground Zero during the epidemic, living in San Francisco, and like all of us who lived through it, was devastated at what seemed to be unreal. An advocate for human rights, Sharon has stood up for intolerance throughout her life. Weeks pass after we speak on the horn. Then on a crisp luminous day, I drive Mother Lincoln (my ’69 classic) and leadfoot it over to Sharon’s place. Knowing that she recently performed in Elektra at The Getty Villa in Malibu, a desired cultural spot, I suggest we catch the Noah Purifoy show at LACMA, the prolific assemblage artist and sculptor (1917–2004). Once there, we take the extensive how-did-theybuild-this? escalator up to the third level of the BCAM building. We mosey through the rousing exhibit and end up outside on the balcony,
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
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It was unbelievable. We spent many nights, all of us, Raymond included, denying that he was sick. And I think it was like that for a lot of people, because to admit that you had the disease would scare people away and you would be isolated. At one point I remember he ate healthier to make himself stronger. We all prayed. [She lowers her head for a moment then glances out as if reminiscing.] The gay scene was so vibrant and strong and the disease was so insidious. It was hard to reconcile.
he was admitted to a hospice on his V.A. benefits. I was so grateful for that. His boyfriend bailed towards the very end. It’s understandable because it’s so painful to watch someone you love go through this. I remember an awful day at the hospice when his disapproving parents—who had traveled across the country—sat at his bedside. They had so much anger and grief. They never accepted his lifestyle but yet they sat vigil at the hospice. [She takes an extended pause.] Raymond was a beautiful man, full of love, creativity, and generosity. I loved his sense of humor and his booming laugh. Raymond was the first director to cast me in a show, and we worked together several times. He understood the challenges of being an ethnic actor and he took me under his wing, opened the doors, and invited me into a life in the theater! [Sharon displays an enormous grin.] I see he was a dear-heart for you. Were you guys able to get funding for Raymond? The Equity Actors Fund was really supportive. I’m not sure how much Raymond received from them, but I know it was one of the few sources of financial support that he had at the time. I contribute to them every year in his memory and in gratitude for their help in those dire times. EAF is a champion organization that makes a difference in many people’s lives. What did you learn from all this? Even when Raymond was sick, I remember not believing that such a disease could exist. I was obsessed with every detail and physical sign of the disease. I wanted to know all of the symptoms in case another friend got sick. What was it like to live in San Francisco at the onslaught of the epidemic?
Like Raymond’s parents, even though it was long ago, AIDS stigma still rears its ugly head in 2015. And like your character, Emma, in Eat With Me, she had a tendency to discriminate Did you and your daughter ever have “The Talk”? and grapple with compassion. Any idea No, my daughter is an avid reader of all how to break down this barrier? things having to do with diseases, so I have I think that the more people own their no doubt that she’s safe. From the age of four identity and sexual orientation, the more she was asking me if I thought she might the barriers will come down. It will force have tuberculosis and was it possible for her people to look closely at their own intolerto die of Scarlet Fever. I have to admit that ance and hopefully choose to make more I’ve been kinda silent while she was growing loving choices. up, though I did tell her numerous times that When I was doing research for Eat we accept her for who she is. With Me, I attended a PFLAG [Parents and Friends of Lesbian And Gays] meeting and met up with some really inspiring parents. These were parents who were sick with grief when they discovered that their children were gay, but then worked through their discrimination to become activists. I marched in the Gay Pride Day parade in June and met a Korean father who told me, with tears in his eyes, that he never imagined in a million years that he would be Sharon Omi in Eat With Me marching in this parade. He said his life is so much deeper than it was before his son came out. Kudos! Good stories to hear. I remember seeing you in the parade, missy! As I explored Emma, my character, I came to understand that much of the distance between her and Elliot [Emma’s son] has to do with their discomfort over intimacy. That I can relate to, Ruby. I experience it with my own parents and even with my daughter. When there’s silence you have to guess at what the other person is thinking and sometimes you start to make things up to make sense of the silence. How darn frustrating! You know, many
I have to ask, I noticed on your resume that you were on Roseanne. What was that experience like? She was a little scary, Ruby—but very funny! Me and another actor played Korean masseuses and she looked at us and said, “I want one of them to jump on top of me and start pounding.” She paused. “Better be the little one!” I’m glad it wasn’t me. I wouldn’t want to piss her off! 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 • DECEMBER 2015
family photo by David Au; film photo by Tamar Martinez
Sharon (right) with husband Ken and daughter
Asian guys are too afraid to tell their families and consequently don’t seek help and eventually die. Yeh, I came from a family that recognizes [she breaks for effect]—the Silence. Basically, you just don’t talk about anything that might make anyone vaguely uncomfortable. There is so much that I felt my parents wouldn’t approve of but you don’t really know for sure because they never really tell you. [She takes a heavy breath.] My hope is that Asian children will have the courage to be honest with themselves and to ask for help. Even if their parents don’t immediately embrace the situation, in the long run they have a great understanding of discrimination and they will eventually understand. It just might take a little time….
Justin B. Terry-Smith, MPH, has been fighting the good fight since 1999. He’s garnered recognition and awards for his work, but he’s more concerned about looking for new ways to transform society for the better than resting on his laurels. He started up in gay rights and HIV activism in 2005, published an HIV-themed children’s book, I Have A Secret (Creative House Press) in 2011, and created his own award-winning video blog called, “Justin’s HIV Journal”: justinshivjournal. blogspot.com. Presently, he is working toward his doctorate in public health. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at firstname.lastname@example.org.
photo by Don Harris © Don Harris Photographics, LLC. all rights reserved
Hello Justin— My name is Alex and I’m a twenty-six-year-old gay, HIV-positive man. I live in Oklahoma and I have always known I was gay since I was a boy. Well, growing up in Oklahoma was hard so I moved to the big city this summer. I was like a kid in a candy store dating and having sex with men. Then I found out I was HIV-positive a month ago and my world came crumbling down on me. Then I met a beautiful man who became the light in my life. He swept me off my feet, we took things very slow at first and I loved every moment of it. When I say I loved every moment of it, I mean that getting to know him before sex was great. When I felt comfortable I told him I was HIV-positive and he didn’t seem to mind, except for when we tried to be intimate. He says it’s not me but I think he isn’t telling me the whole truth. He isn’t able to get hard when I want him to perform anal sex on me; we have done everything and anything to try to get him ready to have sex with me anally, but it still doesn’t work. The only thing DECEMBER 2015 • A&U
that seems to work is giving him a blow job and he usually “finishes” that way, too. Please help me; I think that I might have found the one but I want to be able to satisfy him and vice versa. Please tell me what to do. —Alex Hey, Alex the Great. Thank you so much for writing in. This is something that I’ve heard before from others who have e-mailed me. I say, do not worry or panic. First, let me just say trust is a big issue for a lot of couples. Sometimes men get scared and do not want to admit it to their partners. I would ask him, “Have you ever been intimate with anyone before me that was HIV-positive?” His response might give you more insight about whether or not it might be because you are HIV-positive or because he might need a little assistance getting hard. Oral and anal sex have very different sensations and feels and the tip of the penis is very sensitive and much more sensitive with lubrication. But all in all you see where I’m going with this… at least I hope you do. It could be that he enjoys oral sex more than anal sex because of the way it
makes him feel physically. I would suggest that you both might want to sit down and talk about how it makes him feel physically and find out why he might like it better than anal sex. I’m not a sex therapist but would love to be. If you can’t talk about it alone with each other I suggest seeking the help of a sex therapist. My next suggestion would be to go to a doctor and find out if he or she would recommend or prescribe some “assistance” for your partner. In my opinion this situation is reversible in a good way. I had an ex who needed the little blue pills for ED, but after we were together he didn’t need them. It turns out that being HIV-positive had nothing to do with it. Even though being HIV positive can affect not only us, but our loved ones, as well, to better fight stigma we need to have an open dialogue. We need to be able to open up about our fears and concerns. You need to stay strong because either way there is going to be work that needs to be done on both of your ends. Hmmmmm I think I did mean to say that…lol…hopefully you’re both versatile. Signing off, with love and lube. ◊
Bringing hearts together since 1998
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A&U â€˘ OCTOBER 2015
Web Savvy on-line media provides a platform for hiv literacy
photo courtesy Whorizm
remember the days a few years back when I was nervous about reading about anything HIV-related. I would literally wait until the late hours of the night, or make sure nobody was around me when I would pull up an article, or just simply look up places to go get tested hoping that no one would see me. You see, the fear for me was that if anyone even saw me or could pull up my history to see me reading about HIV or researching it, they would assume I had it. Fast forward almost ten years, now a bold proud activist in my own right (and quite the opposite of that shy information-seeker I once was), I can honestly say that media and platforms around HIV continue to grow in the black community in creative ways that bring the issue right into our living rooms. Take me, for starters. I was originally a writer for many other publications talking about gender and race and sex, and working heavily in the field of HIV services. Wanting to expand my work portfolio while also increasing the voice of the epidemic from the Black LGBT point of view, I reached out to A&U Magazine just hoping for a pitch to be accepted. To my surprise, a world of opportunities was presented me to give a voice to the often marginalized black side of the epidemic in the form of this column. More and more, I am seeing major media publications give opportunities such as mine to people who can actually speak about the epidemic from our own perspective. I am also starting to see a shift in the traditional ways that the message is being spread to the people most hurt by the epidemic. Living in D.C., I am privy to many of the black gay Web series that have huge followings. I am able to meet with the cast, the writers, and the producers and really get involved with the storylines being presented. These series are telling the many different stories behind the stigmas that we live through, but also bringing a new awareness around the virus and how it is spread throughout our communities. On the series Whorizm by Liam Caldwell, he brilliantly displays one of the newest initiatives in locating HIV-positive individuals DECEMBER 2015 • A&U
called Social Network Strategies. In a scene where one man is discussing breaking up with his boyfriend with three friends, it flashes to show that the three friends have all slept with his boyfriend at some point in their relationship. Later in the series, we find out that the boyfriend is HIV-positive and now they all have potentially been exposed. Social networks and circles of sex among friends have become one of the best ways to find newly diagnosed persons in the community. The great thing about media, is that it has now transformed to more than just words, but actual video representation of what it looks like, which makes it easier to visualize, and has a more powerful effect on those viewing it. In another web series Triangle: The Web Series, the creators take aim at a stigma that I have long fought against in much of my work is around the topic of “wasting” and what HIV-positive individuals look like vs. what the old stigma and media portrays. In one episode, the character is discussing his illness which happens to be leukemia, but because he is a black gay male people are assuming that he has HIV. He discusses his challenges and problems around the way people are viewing him. HIV-positive individuals come in all shapes and sizes and you cannot just look at someone and know they are positive. It is great to see shows like this bringing awareness to an issue that may seem small to some, but can be important in changing people’s views around the shaming of body image in HIV-positive individuals. Outside of the Web series, I also have an appreciation for the way that Twitter and Facebook are bringing light to the epidemic. I only recently started making posts
in regards to the importance of testing and knowing your status and HIV-related information. I charge my apprehension around these types of posts to my own fear of being stigmatized by my openness to talking about the topic. Many of us in the community have echoed their concerns around discussing issues out of fear of people attributing the topic on them. To my surprise, I was delighted by the positive response as well as the amount of attention and awareness it brought to many people inside and outside of the black community. It became a catalyst for me to speak and do more work on HIV in the black community in effort to eradicate the stigma and helped me reduce the fear I had placed on myself. Social media has become one of the most powerful mediums we have in terms of sharing and spreading important information to a huge demographic in an instant. The continued trend in major media is only helping us to get the information to those who most need it. So the next time you see me make a Facebook post or Tweet, don’t be afraid to share. You may just be saving the next life. 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.
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.
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.
©2015 Gilead Sciences, Inc. All rights reserved. CPAC0167 06/15
Been There, Done That!
with a little help from destiny’s child, we will survive
people living with HIV/AIDS have been discriminated against, have been abused and abandoned and many have simply given up on their own survival just because of the hurt caused by someone else. The songwriter said, “You thought that I’d be weak without you, but I’m stronger. You thought that I’d be broke without you but I’m richer. You thought that I’d be sad without you but I laugh harder. You thought that I’d wouldn’t grow without you,
now I’m wiser. Thought that I’d be helpless without you, but I’m smarter. You thought that I’d be stressed without you but I’m chilling.” I have met other people, just like myself, who allowed themselves to be drowned by stigma, by fear, guilt, and disappointment. Stigma, fear, guilt, and disappointment, all were reason that many felt weak and helpless, to the point that their self-esteem had been shattered. So, when people asked me how can I do it, I was never quite sure what they meant at the time until they say, “You smile and act like everything is all right. You tell people your status like it’s nothing.” My reply is simple: Being open and having enough courage to tell others my status gave me the freedom to live my life but most of all it has allowed me to be all right with me. I remember being trapped by the fear of the stigma at-
tached to HIV. How do I know? Because I was one of those overly critical persons with a sprinkle of sympathy for those living with HIV/AIDS. However, when you hear those words “you tested HIV-positive” with your own ears, it tends to have a way to humble a person. The truth is, you have a disease. Yes, you are HIV-positive, but that does not make you or me any less loving or human than anyone else. We shouldn’t have to live our lives in guilt and shame, especially in fear of the stigma attached to this disease. Nevertheless, no matter what I say, this trap is the fate of some. But, for one month, this month, I am encouraging you to join in with me and tell stigma the words of Whitney Houston, “goodbye…I will always love you.” Learn to love the criticism of others and that includes learning to love the stigma attached to HIV because then, when you have faced it and have overcome the critical and fruitless burden of stigma, you will come out stronger. In the meantime, it’s time to shine. So, put on your red, walk out bold, hold your head up, and fight like a girl because it’s time to shine. 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 email@example.com. A&U • DECEMBER 2015
illustration by Timothy J. Haines
h, the sound of joy bells ringing, the Christmas carols in the shopping mall, it’s the smell of pine cones that fills the atmosphere that gets me so excited. It’s the season where family and friends come together to present each other with a special gift filled with love, where churches portray the birth of Christ around the nation and the reason we make egg nog and apple cider and cuddle while watching a movie like A Christmas Kiss or I’ll Be Home for Christmas. It’s the season that brings joy to everyone and the time of year where the city is lit up from the Christmas lights and, just as the lights shine bright, so shall we, for it’s the time of year that we recognize HIV in America and that we survived another year. Superstar Beyoncé and the group Destiny’s Child said it best, “I’m a survivor, I’m not gon give up, I’m not gon stop, I’m gon work harder, I’m a survivor, I’m gon to make it.” We are going to make it. Throughout the year, we have worked hard to advocate that Congress will do more for the HIV-positive community. This year, in the eyes of the law everyone has the right to get married regardless of who it is that they love. The fight for “HIV is NOT a Crime” is on and we are believing for a change to protect ourselves regardless of our status. Whether you were a part of AIDSWatch, or just simply writing your state legislator to advocate for change, or if you just simply went to a group meeting to get the help that you need, now is the time to put on your red with a smile and shine—because it’s time to shine! It’s sad to say that the one thing that is killing us more than HIV is the stigma behind the disease but the song “Survivor” in my opinion is the most beneficial song for those living with HIV. Too often have
Almost in homage to Yasunari Kawabata
his was a good year for the wild blackberries. Autumn along the bottom edge of Puget Sound was beautiful. Their place was at the very end of the salt marshes outside of Olympia. Tom got the car out of the garage they’d added after the last flood had made them rebuild everything. In the old days, they were told, there had been a bait shack on their property, and an unofficial park where children fished. Tom had on a clean white shirt and one of his two sports coats, neither of which he needed to wear much anymore. Jack stood outside the locked front door of their house, gripping a paper bag with things he’d want if they made him spend the night. Tom pulled the car up, opened the driver’s door and extended his legs onto the gravel to retie the laces of his right shoe. “My turn this time. I’ll drive. Look, sun. Our lucky day.” Jack got in on his side. He didn’t say anything. “We could have put this off, but what would be the point. It’s a good day for a drive. We’ve got nothing planned, I can stay in Seattle if that’s what they say to do. Put your seatbelt on.” Tom was taking Jack to the hospital in Seattle. Their street was damp and the potholes seemed worse than usual. Jack stared straight ahead while Tom occasionally took his eyes off the road to glance his way. They had to cross two big hills to get to I-5. Tom slowed down when their car needed to squeeze right to make room for a school bus coming the other way. “Thanks,” Tom mumbled under breath when the bus driver moved over as well. “Are we almost there?” Jack asked. They passed a minivan coming the
by John Whittier Treat
other way. “Are we almost there?” Jack asked again. Tom mumbled thanks to the driver of the minivan. It took a long time to get to I-5. They ran onto the shoulder many times to make way for oncoming vehicles. Tom always mumbled thanks, and Jack never got an answer to his question. Tom sat as straight as a tree in his seat, and Jack kept staring straight ahead. “Thanks.” “Are we almost there?” Clouds covered the sun. Tom turned on his headlights. “Thanks.” Tom had always been a more careful driver than Jack. He had never had an accident, not even when they’d done this drive in the middle of the night, both terrified and Tom nearly faint with panic. As they eased onto the ramp leading to the highway going north, Jack’s legs started to tremble. He placed his left hand on Tom’s right thigh. “Are we almost there?”
Tom slept that night on a long vinyl sofa in one of the waiting rooms. Jack had forgotten his paper bag in the car and hadn’t asked for it. They released him around noon the next day. “I’m driving him home. Thanks for everything.” Tom got the car out of the parking garage and pulled it up to the double glass doors. A male nurse helped Jack out of the wheelchair and into the passenger’s seat. “Thanks.” Tom moved yesterday’s paper bag off the seat and threw it into the back. “I’m driving us home now.” When the weather was better, Tom thought, we’ll come back to Seattle and have some fun, like we used to.
Jack stared out his window as they drove down the Seattle street to I-5. Tom reached over with his right hand and placed it on Jack’s thigh. “Are we almost home?” Jack asked. A big truck moved into the center lane to let their car merge onto the highway traffic headed south. “Thanks.” Two motorcyclists waved to signal them to pass. “Thanks.” A state trooper’s arms ordered them to move to the far left lane to avoid the accident up ahead. “Thanks.” “Are we almost home?” Past SeaTac a flatbed trailer loaded with timber got into the climbing lane. “Thanks.” Jack was grateful to the drivers on the highway, and to the doctors at the hospital. After Tacoma the sun came out and shone on the pine trees on either side of the road. “Are we almost home?” They were almost home when Tom exited I-5 at Olympia and started down their long, damp street with the many potholes. “Yes.” This was a good year for the wild blackberries. After he put Jack to bed, Tom thought he would go out and gather some. Autumn along the bottom edge of Puget Sound was beautiful. John Whittier Treat lives in Seattle. He has published short stories in Jonathan and the QDA: Queer Disability Anthology. His first novel, about the early years of the HIV epidemic in the Pacific Northwest, is entitled The Rise and Fall of the Yellow House and was issued by Big Table Publishing in the fall of 2015. He is now at work on a novel about a stutterer who saves the world, First Consonants. Visit the author’s website at: www.johntreat.com
A&U • DECEMBER 2015
Activist and Artist Avram Finkelstein Discusses Silence = Death, ACT UP, and Flash Collective by Alina Oswald
i, I’m Avram,” the gentleman introduced himself, as I reached the meeting point, inside the New York Public Library building. It was the spring of 2014, and I was to meet a few creatives, and together to work on—and ultimately form—what it’s now known as the Undetectable Flash Collective, under the guidance of no other than Avram...Finkelstein, that is, the ACT UP activist, founding member of Silence = Death and Gran Fury collectives, and also mentor for many of today’s artists and activists. It is truly fascinating watching Finkelstein in action. Whether moderating flash collectives, speaking to rooms full of people, or asking strangers on the streets of New York “What is undetectable?” and helping them write their answers on bright red balloons, as part of last summer’s Ideas City event, Finkelstein always amazes and intrigues, inspires in the most fascinating
ways. There’s a kind of engaging energy and passion around him that spells out a certain call to action that many might have been waiting for. Responding to that call might change the trajectories of many people’s lives, in a very unusual, and uplifting way. So, I have to wonder what came first—the artist or the activist—and what would be the one word to describe Avram Finkelstein. “I think one word is ‘politics,’” he tells me over the phone. “I was born into a very political, leftist family, so I’ve spent a lot of time on the Left, in a cultural context. I was born with a sense of social self [that] I think most people don’t develop until later in life. So, it was very easy for me to segue from that orientation into my personal orientation in art, and what the meaning of that was. I guess the first response is politics, and the second is art, and the two are connected.” And Finkelstein got to discover just how closely connected politics and art
could become years later, when the AIDS epidemic took away “the love of [his] life.” “Don started showing signs of immune suppression in 1981,” the activist says, “so, I lived with the terror of a world that wouldn’t even say the word AIDS out loud. And he died in 1984. When the media outcry and the public interest in Rock Hudson started, it really sent me into a tantrum, into a personal crisis that was full of rage.…All of these thousands of people, including Don, had died a year before, and because [Rock Hudson] was famous, people wouldn’t stop talking about him.” From that rage came the Silence = Death collective, in 1985, followed, a year later, by the poster with the same name. Then Finkelstein heard that Larry Kramer was going to talk to the community, and suggested to the collective to go and hear what he had to say. That was the night that ACT UP was born. “I didn’t know Larry. I didn’t travel in his circles. So [when] I walked into that room it seemed to me that Left: You Care About HIV Criminalization, You Just Don’t Know It Yet, Not A Crime Flash Collective, 2014, digital poster, 11 by 17 inches Opposite page: ENJOY AZT, Avram Finkelstein and Vincent Gagliostro, 1990, offset lithography, 11 by 13 1/2 inches
A&U • DECEMBER 2015
the room was incredibly activated, during Larry’s talk,” he recalls. “It seemed so familiar to me, having been involved with the antiwar movement and other resistance movements since I was a teenager. There was no question in terms of whether it was important, useful or engaging to me. That’s why I went back.” ACT UP formed in 1987, at a moment when there was a communal outcry about DECEMBER 2015 • A&U
the AIDS epidemic. By then, the AIDS crisis had been raging for years, and there had been many kinds of responses, such as GMHC. What was building, though, was the realization, among many people, that their personal stories of suffering and loss were now part of a more complex story of a larger community. And the more clear that became, the more angry people became, as a community.
While Silence = Death precedes ACT UP, over the years it has become a symbol for ACT UP. Dark, mysterious, and haunting, the iconic poster is mesmerizing and yet intimidating, threatening to some extent, daring us to face not only the epidemic, but also our own mortality, as connected (or not) to the epidemic. “We worked on the poster for about nine months,” Finkelstein says. “And
Left: Fig. 2, Duncan/Cop Car, Avram Finkelstein, 1979 , 5 1/2 inches by 6 1/2 inches, Platinum print, Avram Finkelstein, 2011, digital print, 8 1/2 by 11 inches Bottom: What Is Undetectable?, What Is Undetectable Flash Collective, 2014, lenticular poster in lightbox, 36 by 36 inches
during these nine months we were not aware that there was a community of people feeling the same way that we felt. So, we were only speaking for ourselves, but we were hoping to stimulate a community response. What we didn’t realize until the poster was up in ACT UP, was that the community was forming anyway. We were not alone. So, looking back on it, it’s one thing to imagine that we created this monolithic thing that created the communal response, but in fact we were a part of the communal response that was already happening.” The Silence = Death poster started out as an idea of a poster about a tattoo on an HIV-positive person. But that raised questions about how best to depict an HIV tattoo, and also about the gender, race and class of the person to be photographed wearing the HIV tattoo. So the collectives decided against using a photographic image, and started thinking about iconography, only to realize that, there, too, were problems, “including that pink triangle,” Finkelstein says, “which, in the beginning, we rejected....So we decided to make it over—we changed the direc-
tion of it, the color of it. The problem that I presented to the collectives to solve, with this poster, was very simple and very complex. I said, I want to do a poster that will create a space within the communities affected and organized politically around AIDS, and also outside the [AIDS] community. That’s why, when you look at it, all of these layers keep being revealed.” There were other things to be considered, when designing the Silence = Death poster, like, for example, its intense color. The poster not only evokes a dark mood, but it’s itself dark, and daring. The collectives used black “to carve a meditative space, because [the poster] was supposed to be put alongside commercial posters.” Finkelstein remembers his mother’s reaction to the poster. “Shortly before she died, she told me that she’d actually seen [the poster] on the streets
of New York, and she said, ‘I saw it and I thought, this is the shot round the world.’” The poster means so many things to so many people. “It can be disempowering, and also accusatory,” the artist says. “Every part of the poster has this dynamic tension, and I think it’s part of the mysticism that you see in it, and it’s deeply intended, and part of the reason it took so long to get to, and part of the reason it still resonates with many people.” He is currently working on a book about Silence = Death, social engagement and the commons, and the way in which images function. He calls it a workbook for artists and activists, to help them think about the public sphere. “I’m taking some of the most recognizable works from Gran Fury and Silence=Death collectives, and using them as an entry point to talk about all of the political work that brought these works into being, and about what we can do about it now.” Although Avram Finkelstein might be best known for Silence=Death, he has created many other works, mostly inspired by AIDS activism. He worked on the Enjoy AZT poster in 1987. One year later, when Gran Fury collective was formed, he brought the idea of this poster to the collective. But because, at the time, AZT was the only HIV medication available, some members of the collective did not feel comfortable critiquing it. “Of course, the intentions of the poster turned out to be true,” Finkelstein comments. The poster
A&U • DECEMBER 2015
resonates with a lot of people to this day. It points a finger to “the profit motif that you cannot deny is attached to the pharmaceutical industry. And there are many AIDS activists that are comfortable living with that idea. I believe that you can be comfortable living with an idea, but still be critical about it. And that’s what this poster [tries] to do.” Finkelstein has always dealt with HIV and AIDS issues. Nowadays, he mentors young activists. “I feel that there’s a tremendous amount of rage [today] in the HIV/AIDS communities,” he says. “It’s just not as reported, because there are many things that people consider to be advances in terms of HIV and AIDS. So, there’s a lot less of a communal support for being angry about the problems that still exist. And I have to say for the record,” he adds, “I’m serious about it, I’m just as angry now as I was in 1981. I feel that the price of admission for being politically engaged is that you are always engaged. There’s no end result when it comes to fighting institutional power, because institutional power structures will always exist. The minute you disengage, something you’ve been given could easily be taken away.” And so, he continues his engagement in the fight against AIDS through his flash collectives. “A flash collective is an experimental political outline,” he explains, “a pedagogy that I’ve developed, based on doctrines of working within collectives. If you assemble a group of people and give them an opportunity to speak about a public issue, [these people] would have something to say. So, the flash collective is like a laboratory, sort of a balancing act between structure DECEMBER 2015 • A&U
Above: I Have HIV, Call the Cops, Fuck Laws Flash Collective, 2014, projected billboard, 84 by 36 inches Bottom: Rainbow Flag Sticker, Queer Crisis Flash Collective, 2014, offset crack and peel sticker, 4 by 4 inches and permission, to force people to engage.” Flash collectives deal with issues of the modern day epidemic, issues still left on the battlefield, such as stigma, viral divide, and HIV criminalization. They help people realize that “social engagement isn’t the book, it’s an opening sentence to a book.” Finkelstein adds, “Flash collectives are like organisms, and they need to be listened to, and respected.” He would like to curate a show that draws from each of the flash
Speaking about his fighting the epidemic, he recalls telling his father, “Look, I have two choices. If I don’t do anything, I know what happens—people will continue to die. If I try something and it doesn’t work out, I’m going to try something else.” He adds, “In a way, the flash collective is the current iteration of my decades of thinking about how people engage with the question of HIV, and how the public views it.” Avram Finkelstein remains engaged in the fight against AIDS, and believes that we find ourselves in a potentially radicalizing moment. “We have the few remaining people who were there in the beginning of the HIV/AIDS pandemic, who are still alive,” he says. “We [also] have a young generation of artists who are really interested to understand the world that they were born into. So, we have this bridge between these two generations that’s only going to last a little while. So, we have to give future generations the responsibility to learn as much as they can, and share as much as we can, because if we don’t do that now, then the story ends, and the future will just make stuff up. That’s why I feel so compelled. That’s what the flash collectives are about. That’s what this talk is about. That’s what, in every waking moment, I think about.”
collectives he’s moderated over the years. For him, political engagement is a lifelong activity. He recalls one of the last conversations he had with his father.
Find out more about Avram Finkelstein by logging on to: www.avramfinkelstein.com. Alina Oswald is Arts Editor of A&U.
I Want to See U Be Brave With the Help of Other Women Living with HIV, Andrea Johnson Launches Red, White & U to Fight HIV Stigma by Chael Needle Photographed Exclusively for A&U by Jeremiah Page
ometimes you come face to face with stigma. The shaming and fear that often seem to float like particles, somwhere out there, sometimes materialize right in front of you. Andrea Johnson, founder of Philadelphia-based Girl U Can Do It, Inc. (GUCDII), didn’t expect such an encounter last August at the DIVAS Simply Singing! kickoff in Philadelphia, where Sheryl Lee Ralph enlisted Faith Evans, Monifah, and others to mark twenty-five years of AIDS advocacy. Johnson had attended to pass out flyers promoting her own organization’s awareness initiative, the first annual Red, White & U HIV Anti-Stigma Photo Shoot and Campaign, which features stunning photographic portraits of women living with HIV. “Oh what you think, I have HIV?” a young woman retorted when Johnson tried to hand her a flyer. “No, we’re promoting a campaign,” Johnson responded. “Why would you want women to come and show their faces? That’s something that should be kept private.” Says Johnson, reflecting: “In 2015, I was so surprised to hear that. And I think everyone around me that heard it was surprised, as well. That ignorance in our community in regards to [HIV]—it all comes from fear, and because the person doesn’t know. Yet they are the ones who are more at risk than a person who has some education on the matter and can take an educated stance in regards to protecting themselves from acquiring HIV.” At first, the longtime advocate was at a loss for words, flummoxed, stuttering, but after a quick plea to her Lord to help find the words to help the young woman, Johnson, who is studying to become a human rights attorney, took her aside for a “sidebar
conversation.” “She was blown away once I told her that I was HIV-positive,” Johnson relates. She joked with the young woman in all seriousness, telling her: “‘I look good! You can’t tell me that I don’t look better than a lot of people out here! But you know what? I’m still a person living with HIV and this is how HIV looks. It’s no longer what you thought, or what your mom may have told you, or what your girlfriends are hypothesizing what it looks like. This is what it looks like. And for me to able to help to save you, I need to educate you, to make you more aware about what’s around you, so you’re not going to be blinded.’” And that’s part of the aim of Red, White & U—to give people a different perception about living with HIV, particularly as a woman. Like Johnson on the day she met the young woman and came face to face with stigma, it’s about being brave, beautiful, and courageous. The women in the photos are celebrating life, making eye contact with the viewer, feeling fancy not forlorn. The glamour is strategic—it’s about remembering and healing, not forgetting and suffering alone. They are showing off a cosmic shift in self-esteem, not a cosmetic one. They are women living with HIV speaking for themselves; they are not “victims” to be talked about by others, in whisper. The photos are only a first step in education. Johnson hopes that the photos, which will be distributed to magazines like Essence, Ebony, Latina, and Cosmo to prompt editorial coverage, will spark conversations everywhere so that people start to open up about HIV and ask questions. “If they don’t educate themselves, those stigmas are going to continuously happen,” says Johnson, who has worked in HIV counseling and testing, as well as education. If people say these AIDS awareness campaigns are “too much,” Johnson has
a response for them: “There can never be enough!” Not right now. Not while stigma and discrimination are rampant. Not while communities are hard hit. Not while individuals do not know the basics of transmission, or are still perceiving AIDS through the lens of the 1980s, when gay white men became linked with HIV to the exclusion of others, including women. Not while gender-based violence is driving the epidemic. Not while people like the young woman at the DIVAS kickoff feel that living with HIV means being singled out, morally humiliated, castigated, and punished. By staying on top of their health and wellbeing, Johnson attests, people are living longer with HIV and realizing that different and multiple paths to empowerment have opened up. And some of those paths have been—and are being—paved by women. “Just like a lot of things within our society, within our world, that impact women differently, HIV does as well. Women, for so long, we’ve been behind the scenes in so many ways. We’ve kept quiet in a lot of ways. And within the last, I want to say, ten, twelve years, we’ve started voicing ourselves in regards to saying, ‘You know what? We’re not going to stand for [what’s] going on. We’ve taken a lot. We’ve taken a lot of abuse. We’ve taken a lot of inequality. We’ve taken a lot from society.’ “I respect the women in the fight—in any fight, whether it has to do with HIV, inequality, women’s rights—because it’s something where you have to be brave, really brave and courageous to fight against systems that have been against you for so long.” Finding one’s voice and changing the world for the better does not mean these straight-identified advocates are excluding men, notes Johnson. “We love our men. We really do. But we have to be able to take care of ourselves to continuously to help A&U • DECEMBER 2015
others. Because women are the nurturers of the world and everyone knows that, whether they’re white, black, pink, orange, green, purple, anything. We are nurturers by nature, and a lot of things do revolve around us. [However] we need to be able to take care of ourselves and be strong in ourselves and have that self-confidence, to tell ourselves, we can do anything that we put our minds to. “Speaking as a woman, because I can only speak as a woman, we go through some serious hardships but sometimes I feel as though we’re put on the back burner on a lot of issues when we should be put on the forefront. I believe that women will be one of the groups that will bring the end to HIV and AIDS here in America and abroad. So we found our voice and we are working it hard. I respect organizations like Sister Love, Positive Women’s Network—USA, and all of the organizations out there stating that we will no longer be silenced about something concerning us and impacting us in a huge way,” shares Johnson, who is a member of PWN-USA. An advocate for her whole life, Johnson initially started GUCDII to empower at-risk inner city youth and young adults. Two years later, after she acquired HIV in 2007, Johnson implemented an education, awareness, and preventative services component to help end HIV and HIV-related stigmas. The organization has grown and redefined its mission to provide comprehensive health and awareness education and prevention services for disadvantaged youths, young adults and families. She also hosts Real R.A.P.P. (Raising Awareness for Prevention & Protection) Radio Talk Show, whose broadcasts engage communities in a dialogue about issues that affect their lives, such as domestic violence, STDs, youth violence, homelessness, mental health, and substance abuse. Her activism in part stems from personal experience, growing up in the neighborhoods of North Philadelphia, the “Badlands,” and being exposed to an environment where negativity threatened to overshadow nurturing. “It was horrific. I’m
not going to sugarcoat it. I’m going to call it like it is,” she states. She faced challenges, compounded in part by the death of her mother at two and an absentee father. Nurturing won out, however. Her grandparents were and continue to be her “saviors.” She thanks God for them every day. “So with that firsthand experience and knowing what kids who are suffering hardships go through, then being able to work with kids that your city and other places consider to be the ‘worst,’ and being able to turn them around [so that they] become productive citizens of society was and still is one of my main goals for Girl U Can Do It,” she says, proudly listing their accomplishments. “We show our love through our actions. We don’t disable, we enable. To be able to say [to the world], ‘You were wrong about this child. Your opinions and your judgments and...biases were not something that should have been bestowed [upon them].” These youth, she attests, simply need love and to be shown the way. Her experiences helped her relate to them, and her own story became a way “to help them see that they are in control of their lives. Although we have bad things that happen to us, that doesn’t mean that that takes over us and we can’t change to become something better than what we came from. That’s the message I’ve given to my youth.…I love the fact that I have been able to take a negative in my life and then pay it forward to be something positive in the world, in the society that we live in today.” Johnson knows deep down that her experiences living with HIV will help others, too. “I was very naive, as well as very ignorant to how HIV was and wasn’t contracted. My infector was also my abuser. I
had a history of domestic violence, as well as contracted HIV from [being partnered with] one individual, who was ten years my senior and had had the virus for many years before he even met me. In our community, we have a lot of persons of that nature, but at the same time, accountability goes on both ends. I am free and able to talk about it the way I choose because the mistakes that I did make [I know now were] from loving and trusting someone... that I should not have even attempted to love. I use my life as an educational tool to help others.” People are listening and taking heed, she says. And feeling less isolated. Until she came out about being positive and a survivor of intimate partner violence, Johnson had not realized how many people were affected by these issues, and also felt isolated. “When we are going through it, we all think it’s only happening to us until
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we open up our mouths and we speak and we talk and we hear about it,” says Johnson. She has realized, however, that not every woman can speak out for fear of reprisals—from loved ones, their community, their job. So Johnson adds their concerns to hers, and lets them know that support is there so that they too can “be that brave person to take that first step forward and say, ‘I need to make a change.’” Red, White & U, launching in time for World AIDS Day, aims to create that environment where positive change happens. The campaign will partner with other organizations to hold evidence-based educational sessions and seminars and will circulate the message via media platforms, in print and on the Internet. Johnson plans on keeping the campaign active all throughout the year, as the various AIDS Awareness Days pop up on the calendar. Describing the process of the photo shoot, she says, “We gathered women together that are commited to making a change, that are standing up and saying, ‘I am not fearful; I am not going to be stigmatized any longer by this. We need to show the world what HIV looks like.’” After she put the call out and received responses, she and a team of photographers, makeup artists, designers and stylists held photo shoots for women living with HIV in Philadelphia and New York City. (And she was overjoyed when all came together to work for free, more concerned about heartstrings than pursestrings.) From around the world, women submitted photos as well and these will form a banner backdrop, Shero’s in the Fight to End Stigma. Her sister Monica thought up the name of the campaign and Andrea immediately liked it for she could see how it combined the science of HIV and the hope: “RED represents the BLOOD that flows within us ALL that will carry HIV if contracted; WHITE represents the FIGHTING T-Cells (CD4) that will fiercely try to prevent the infection from spreading in your body, despite the T-Cells being tricked into making copies of HIV; and U represents the way we will FIERCELY FIGHT and educate ourselves, TOGETHER, to bring an END to HIV and the STIGMAS that are associated with it.” The portraits will convey each individual’s message and Johnson hopes the messagDECEMBER 2015 • A&U
we can stigmatize ourselves as well. Then you have that on top of people who do not have HIV stigmatizing you as well; that’s like a double bubble,” she says. “This campaign is not just to promote cute, and get pretty pictures. Red, White & U is meant to show, to encourage, to inspire, to educate, to motivate both parties, whether you are negative or positive. If you are negative, let’s educate you on how to stay negative. Let’s go get tested so you know your status and you know that you’re negative and you’re not just hypothesizing.... “And for those who are positive, educate All smiles: Red, White & U participants and staff yourselves so that you in Philadelphia are better informed how to keep yourself es will inspire other women, show them they healthy and keep are not isolated, as well as decrease stigma yourself alive. And don’t go into the negative and increase testing and engagement with stigmas, that we’re going to die, bad things care. The community needs to do its part are going to happen. No!” too: “Don’t sit back and say, ‘Oh, we don’t When viewers see the Red, White & U know.’ Come out. Be brave. Learn something photos, Andrea Johnson hopes they will see that can not only save your life but you can what she sees: “These women are not letting educate yourself to help save another life, their status stop them doing what they want so we can keep paying it forward, so if you to do in life: These women are mothers, know someone who said something that’s in school, work in corporate America, are not true about HIV you can say, ‘No, honey, educators and community builders working this is how it is.’” on ground zero. They’re just human. We’re She adds: “When something of this just humans living with HIV. magnitude reaches your community, it gets “We have HIV. I always call a person your attention. When it reaches your family, with HIV a ‘Human Involved in a fight it really gets your attention. My father died to obtain Victory.’ Because that’s basically from AIDS. I had two very close cousins who what you are once you realize that the HIV died from AIDS. I can probably say, ninedoesn’t stop you.” ty-nine percent, that there’s not a person in this world who doesn’t know, has heard of, or A&U photo shoot make-up artist: Leah “GoGomay have someone within their family who Leopard” Exum; stylist: Jade Couture. has HIV or AIDS. That is both disturbing... For more information about photographer Jereas well as eye-opening. It should tell friends, miah Page, log on to: www.jeremiahpage.com. families, communities, you don’t need to E-mail: JPage@jeremiahpage.com. stigmatize a person who has this virus, especially as it is running rampant in our Real R.A.P.P. airs every Monday night from 6 community....If you are not aware, you do p.m.–8 p.m. on Spiritual Connect Radio (www. more harm than good.” spiritualconnectradio.com). For more informaCollaboration is key. “In order to bring tion and to learn how you can contribute to the anything to an end it’s going to take unity of cause, log on to: www.girlucandoit.org. us. For those of us living with HIV and for those who are not. Because [living with HIV] Chael Needle is Managing Editor of A&U.
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VE CONNECTION For Twenty of the Thirty Years She Has Been Living with HIV, Aileen Getty Was In Pain. The Last Decade, Though, Has Brought Not Only Joy to Her, But to Others As Well by Dann Dulin Photographed Exclusively for A&U by Sean Black
t one time, Aileen Getty’s grandfather, J. Paul Getty, industrialist and art collector, was known as the richest man in the world. With such a pedigree, you’d assume that Aileen was destined for a life of ease. It wasn’t. In fact, some parts played out like a tragic Gothic novel. On a hot, muggy end-of-summer afternoon, my assistant Davidd and I drive up the winding tree lined gravel road to Getty’s ranch in Ojai, California, an hour north of Los Angeles and long a retreat for celebrities (Channing Tatum and Emily Blunt recently bought homes here). Aileen invited this journalist to her recently purchased home. She rarely grants interviews—in one article she had protested, “I’m terrified of interviews…”—so I wanted to put her at ease.
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didn’t have to. Standing by the Spanish-tiled front door, Aileen, along with her publicist, Sarah, warmly greet us. We easily embrace with robust enthusiasm, as if we’ve known each other for years. Then Aileen offhandedly asks, “Why don’t we all go on a bike ride later this afternoon?” Her brightness and eagerness are disarming. Our host is smartly clad in beige slacks and a loose-fitting muted grey-blue Spanish top, her feet in sandals. The Holly Hunter-lookalike is down-to-earth, kicked back, and possesses a hint of Earth Mother. She’s a refreshing throwback to the Sixties. She has several tattoos, one on her upper arm that reads “Biohazard” (“I wanted to wear it like a badge so HIV wouldn’t corrupt my insides”). A subtle raspiness to her voice summons up Lauren Bacall, and the rhythm and intonation of her speech is, well, a bit like Holly Hunter’s. While remarking about the unusually humid weather, Aileen escorts us into a spacious, sun-splashed room. Immediately, my eyes dart to the intense lavender tablecloth on a circular dining room table. Surprise. It’s set for lunch. In the center are vases of freshcut flowers from her revered garden. The room is brimming with contemporary art. Some paintings hang, others rest on the floor. Aileen is not fully moved in yet. An expansive floor-to-ceiling window offers a view of the lush landscape. As we chat about politics, disco music, reality television, and selfies, Aileen totes out platters of food from the kitchen one at a time. A local chef prepared today’s lunch and, because of her sensitive immune system, she’s a vegan. She asks us if we’re okay with that. “Unfortunately, eating for well-being is a very expensive proposition today. I think we have to demand organic food and once we start eating it regularly, the prices will come down,” she asserts, carrying out a dish, concluding, “I love how food brings us together.” What a feast! I ask about the menu. (She owns several restaurants in Los Angeles.) Aileen fetches a list and reads: Socca’s made with chickpea flour (“I like them because they taste like a dry omelet.”), yellow squash primavera, Swiss chard and red Cannellini beans, and smashed Peruvian potatoes (they’re purple). Suddenly, she scans the table. “Hmmm, we have quinoa with sweet potato and kale, but I don’t think I brought it out…,” she flashes annoyance, though sounding not terribly
fussed. She returns to the kitchen and brings the dish to the table. To drink, we have a choice of different flavored Kombucha (fermented tea and mushroom). I choose the Golden Pear and note that it tastes like beer. “That’s why I love it!” exclaims Aileen, amid a devilish laugh, which is guttural and infectious. Sarah adds, “It got me to stop drinking Diet Coke.” After touching on Caitlyn Jenner (“a hero to me”), aging (“the simple answer for me is inner beauty”) and what male star is hot (“Mark Ruffalo”), Aileen explains her fear of interviews. “I feel like I don’t have a whole lot of weighty things to say about HIV and AIDS, because I’m [too] emotional about it,” she clarifies. “I have a deep aversion to being public, mostly because I’m afraid of being ridiculed. I become vulnerable and then a shark attacks me. I had a few incidents in my past that were demoralizing. I woke up one day and
seeing the patient. Sometimes a whole body suit was required. “As soon as I was aware of the disease, I went into high gear…,” she reflects intensely, her serious big browns squinting. “I may have been one of the first people around the amfAR offices. I could be wrong. There was an office in Beverly Hills and I remember I was alone there and learning how to use Microsoft Word.” In 1985, Elizabeth Taylor co-founded amfAR with Drs. Michael Gottlieb and Mathilde Krim. One of their fundraisers was called Art Against AIDS. Aileen nonchalantly points to a piece of assemblage art hanging on the wall. “I created this for Art Against AIDS years ago.” I rise from the table to view it. It’s roughly three feet-tall and four feet-wide, with the words “Death Row” repeated in the same typed font throughout the piece. Diagonally across the bottom are double zeroes with the word “zeros.” Framing the piece is slate-grey barbed wire fencing, which brings to mind the crown of thorns Christ wore for the crucifixion. Last year, L.A.’s Project Angel Food honored Ms. Getty with its inaugural Elizabeth Taylor Leadership Award. She also serves as Ambassador to her former mother-in-law’s organization, the Elizabeth Taylor AIDS Foundation (ETAF). Aileen married Elizabeth’s son, Christopher Wilding. Taylor played an important role in Aileen’s life. Aileen and Chris had just moved into a Los Angeles apartment when his father, British actor Michael Wilding, died. Aileen and Elizabeth met at the Wilding homestead in England when attending his funeral. “To this day, it is just such a good family. I’ve been so fortunate,” she admits with admiration. Though Aileen and Chris divorced in 1990 after eight years (though together for ten) and two kids, Elizabeth and Aileen remained family. Taylor, who Aileen calls “Mom,” was never judgmental and supported Aileen until her death in 2011. Interviewed for A&U by this reporter in 2003, Elizabeth proudly said, “Aileen is magic. What a survivor. She’s been in and out of hospitals so many times but she fights. Aileen is a tiny woman yet she uses her courage, her brain, and every power in herself. Her spirit is keeping her alive.” “Mom made me feel loved,” Aileen says softly with heartfelt passion. “This was huge for me but I was never able to reciprocate. I needed somebody to be totally un-
“So much of those ten years were fulfilling, engaging, but sometimes bewildering. It was the most creative decade of my life.”
found myself on the cover of the National Enquirer. I was so humiliated.” She laggardly arranges her very long, straight brunette hair behind both ears. Brutally honest, Aileen has overcome many of her demons and achieved selflove. “I learned how to live in a way that makes me feel comfortable with myself. I learned not to depend on someone else. I can do for myself! It’s been really good…” “Dude [she uses this affectionate term occasionally throughout our time together], I’m at a place now where I know very little. In some ways I’m at a loss. Not a void, but a loss that’s looking to what I can divert into.” Aileen pauses, then peals off some wisdom. “You are enough. At all times preserve what’s authentic within you! We have the freedom to change our minds so long as we stay truthful,” she attests. “So much of those ten years were fulfilling, engaging, but sometimes bewildering. It was the most creative decade of my life.” Aileen became an activist early in the epidemic before she was diagnosed. At that time, the hospital rooms were quarantined. When a visitor arrived, they had to don surgical masks and gloves before
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afraid because I ended up turning people’s fear of me into a weapon that I turned against myself,” she recalls. “To have Mom in my court was an incredible gift. I wasn’t able to engage because I just didn’t have the courage to do so at the time. But none of it went unacknowledged by me. Today I’m here in large part because of Mom and some other anchors who expected more of me.” Aileen takes a sip of Kombucha. “Even to just be attached in name to Mom is huge for me. I feel privileged to be in the same energy field as she’s in. I’m honored to be Ambassador of her Foundation. It’s a direct activity with mom’s spirit and to stay connected with her.” “Connected” is a word Aileen uses many times this afternoon. “I love knowing so many people and being connected to them. I love their interests, their passions,” she rapturously remarks with drink in hand. “It changes your lens. When your input is so diverse you become a more diverse human being. Most of my life was less connected but now I have this connectivity where I feel this new freedom to be myself.” She takes another serving of squash and potatoes and sums up spritely, “We all have a connection! There’s a bridge that exists between each of us. I want to take more time understanding the bridge….” After Rock Hudson went public with his AIDS diagnosis, Aileen was at Elizabeth’s home sifting through his mail. Elizabeth and Rock were dear friends. “I was going through sacks and sacks of Hudson’s mail reading how much hatred was within the letters. It was staggering to read how frightened people were. My introduction to AIDS was full-on.” “In retrospect,” she notes, “it’s somehow odd that during that period I ended up becoming HIV-positive myself, having chosen behaviors to attract that. I really do believe we attract certain things in our life because we have something we want to learn from it.” Tara, her nearly two-year-old Akita, brushes in between Aileen and me. “You’re just the best girl,” she enthuses as she pets her. “It was such a powerful time for me. The world changed. “I felt like I was the only girl. I was frightened. I didn’t throw myself into that place of embrace that I might have had if I had been a gay man. I was raising two little kids. I didn’t want people to know where I had contracted HIV.” Though diagnosed in 1986, she didn’t go public until 1991. It wasn’t her choice. A television show informed her that they were going to air a piece on her. Magic Johnson had recently come out. “At that time I was in poor shape. I was high. I DECEMBER 2015 • A&U
was ashamed of myself,” recounts Aileen, fiddling with one of the cream-colored lengthy tassels that hang from her short sleeves. “I had been clean before I contracted HIV, but when I was diagnosed I got high again and I stayed high. That was my way of dealing with it. It’s no excuse, but that’s what I did. These last ten years have been extraordinarily enlightening.” There’s a note of gratification in her voice. “In the past thirty years, I’ve learned adaptability—emotionally, spiritually and physically. My being has become more elastic and bounces in ways that it wouldn’t have done before. I developed in so many ways.” Elizabeth Taylor was an unwavering source of support for Aileen, but others, including family, were not so kind. “I remember that feeling of prejudice,” she laments matter-of-factly. “The early years were very hard years and I don’t think I’m over that. I don’t talk about it much, but I feel it. It lives in a very deep place in me that’s conflicted and still painful. I’m more of a person now who reaches out for joy instead of pain. It’s still an emotionally charged active event within me.” She stops, giggles, and grins. “I wouldn’t change anything, because it’s been… such… a ride.” Aileen’s childhood was spent in Rome. In 1976, at seventeen, she moved to America. Anorexia, addiction, rehab, self-mutilation, abusive relationships, and then HIV touched her life in the early years. She contracted HIV after having unprotected sex when she was involved in an extramarital affair. It shattered her marriage to Christopher Wilding. After another marriage and another divorce, Aileen was on this decade-long trajectory of reflection. A survivor, she has transformed herself into a global philanthropist and
community leader. In 2005, she established GettLove, a nonprofit organization to house and aid Los Angeles individuals who are experiencing homelessness. In 2012, she founded the Aileen Getty Foundation, currently supporting eight causes: YaLa (youth oriented social network-based peace movement), David Lynch Foundation (to bring meditation and mindfulness to school children), Center at Blessed Sacrament (homeless project), amfAR (dedicated to ending AIDS through research), Museum of Contemporary Art (preserving art), Africa Foundation
(empowers communities around wildlife conservation areas), ETAF (raises funds and AIDS awareness), and Friends of Hollywood Central Park (a New York Central Park-inspired infrastructure plan). The Gettys are not unlike any other famous wealthy brood. Tragedy is woven into their lives. When asked about this, Aileen replies, “This sounds like such a simple continued on page 62
Shimmer, Spa amfAR & DIVAS Simply Singing Kick Off the Season of Giving Text & Photos by Sean Black
othing is more generous than the gift of good health and this holiday season A&U shines a beacon of light on those who couldn’t be more thoughtful and giving in the way of philanthropy. Celebrating World AIDS Day, Tuesday, December 1, amfAR and UCSF AIDS Research Institute are cosponsoring the 2015 HIV Cure Summit in San Francisco, a community update on HIV cure research that is free and intended for the general public. Attendees will learn about the latest on cure research from leading scientists at UCSF and about amfAR’s efforts to support and advance the cure
research field. Speakers include amfAR Chairman of the Board Kenneth Cole [A&U, November 2011], UCSF Professor of Medicine Steven Deeks, MD, and Kevin Robert Frost amfAR’s Chief Executive Officer. Other noted researchers and doctors critical in this field will also present. For more information and to RSVP go to: www.amfar.org/Summit2015. The vital funding for much of this costly research comes in part from amfAR’s illustrious black-tie events like this year’s Inspiration Gala Los Angeles hosted by Gwyneth Paltrow. Held on October 29 at Milk Studios, The Foundation’s sixth annual benefit for AIDS research honored
creative genius Ryan Murphy, the mastermind behind Glee, American Horror Story and our latest TV indulgence Scream Queens. The evening featured cocktails, dinner, a live auction, and musical opener by AHS: Hotel’s current reigning vamp, Lady Gaga. Walking the carpet’s sea of red were Murphy, Paltrow, event chair Kenneth Cole, amfAR Global Campaign Chair Sharon Stone, Kevin Robert Frost, amfAR Global Fundraising Chairman Milutin Gatsby, Kiehl’s USA President Chris Salgardo, Diane Kruger and Joshua Jackson, Rosie Huntington-Whiteley, Dan and Dean Caten of official fashion sponsor
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arkle & Shine DSQUARED2, Alessandra Ambrosio, Drag Race winner Violet Chachki, model Lydia Hearst, Jaime King, Jay Ellis [A&U, May 2015], Teddy and Milissa Sears, Jamie Lee Curtis [A&U, October 2001], Cheyenne Jackson [A&U, January 2014], with husband Jason Landau, Angela Bassett, Matt Bomer, Emma Roberts, Lea Michele, Sarah Paulson, Evan Peters along with cast members from Scream Queens and AHS: Hotel. Presenting sponsors were M•A•C Viva Glam and Harry Winston, which provided exquisite starlet bling. amfAR, The Foundation for AIDS Research, is one of the world’s leading nonprofit organizations dedicated to the support of AIDS research, HIV prevention, treatment education, and the advocacy of sound AIDS-related public policy. Since 1985, amfAR has invested $415 million in its programs and has awarded more than 3,300 grants to research teams worldwide. For more about amfAR’s star-studded events, log on to: www.amfar.org/ events.html. Opposite page: Dan and Dean Caten of official sponsor DSQUARED2 flank amfAR Chairman of the Board Kenneth Cole
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This page (clockwise from top left): Chloë Sevigny; Matt Bomer; Lea Michele; and Kevin Robert Frost, amfAR’s Chief Executive Officer
Top: Sheryl Lee Ralph celebrates twenty-five years of DIVAS
photo by Jeff Vespa/Contour by Getty
Bottom: Sheryl Lee Ralph honors advocate Hydeia Broadbent, as Sheryl’s daughter, Ivy (Coco) Maurice, looks on
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Clockwise from top left: Dr. Rachael Ross [A&U, September 2015] is honored by DIVAS; Loretta Devine [A&U, January 2008 ]; Sheryl Lee Ralph in a glam pose In addition, the Hollywood holidays wouldn’t be the same without its annual kickoff by Sheryl Lee Ralph [A&U, 2008, 2015] who along with The DIVA Foundation presented its 25th Annual DIVAS Simply Singing, the longest consecutive running musical AIDS benefit in the country on October 24 at the iconic Montalban Theater. The Original Dreamgirl did what she always does—shined bright as ever in the packed house with an especially touching rendition of Broadway’s Wicked hit song “For Good.” The show featured performances by some of the most talented DIVAS in entertainment, including longtime supporters and fellow Dreamgirls cast members Loretta Devine (The Carmichael Show) and Jenifer Lewis (Blackish). Rising to the occasion were A’ngela Winbush, Meli’sa Morgan, Shanice and Flex Alexander, rapper YoYo, Alyson Williams, the Supreme Mary Wilson, Freda Payne, Jordin Sparks, Verdine White of Earth, Wind and Fire, Eloise Laws, and Wendell James [A&U, March 2015], and many more. CeCe Peniston brought the house to their feet and closed the evening with her hit “Finally.” Honorees of the evening were Merck, L.A. County Supervisor
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Mark Riley-Thomas, Dr. Rachael Ross [A&U, September 2015], and activists Cathy Elliott, Hydeia Broadbent, Sade Oyinade, and Sherri Lewis. For more information, log on to: www. thedivafoundation.org. A heartfelt and sincere thank you goes out to the staff and supporters of amfAR, thezz research team at UCSF and to Sheryl Lee Ralph and her entourage of loyal DIVAS and DIVOS bringing such divinely inspired hope to the HIV/AIDS-impacted and affected communities this holiday season. Sean Black is a Senior Editor of A&U.
He’s Been at the Forefront of the PrEP Movement From the Very Beginning. In an Exclusive One-on-One Interview, Damon L. Jacobs Shares the Details of His Trailblazing PrEP Journey. by Chip Alfred
Photographed Exclusively for A&U by Alina Oswald
e was one of the first people to start on a Truvada for PrEP regimen—even before it was FDA-approved. He was featured in the first major national news article about PrEP, speaking candidly in The New York Times about having condomless anal sex. And he founded the first consumer-led social media resource for PrEP, which has amassed more than 10,000 members worldwide. These are just a few of the firsts for Damon L. Jacobs. After my interview with him, it was apparent to me there would be more firsts to come for this already accomplished PrEP champion. A&U wanted to find out how he became one of the leading voices advocating for Truvada, and what he sees as the next steps for PrEP. A marriage and family therapist with a private practice in Manhattan, Jacobs, forty-four, knew he was destined to help people from the age of five. “I would put up a stand in my parents’ living room to tell people they could come to me with their problems,” he says, as if he was channeling Lucy from the Peanuts comic strip. Born and raised in Los Angeles, Jacobs enrolled at UC Santa Cruz to study psychology. It was there he met a man who would have a profound impact on his life. Vito Russo, a fierce AIDS and gay rights activist, is the author of The Celluloid Closet, a groundbreaking look at the treatment of gay and lesbian characters in Hollywood. Jacobs, then eighteen and still in the process of coming out, sat in Russo’s class and hung on to the author’s every word. “He was so open about being gay. He was the first person I knew who was living with AIDS, and the first person I knew who died from it,” recalls Jacobs. “Vito inspired me. I realized if I seriously wanted to be a
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healer that I had to be an activist, an educator.” It was Russo’s confession—“I wish I hadn’t wasted so much time at bullshit cocktail parties”—that motivated Jacobs to stand up against the devastation and trauma of AIDS at that time. From that moment on, Jacobs has been continuously involved in HIV prevention and education—either in his career or as a volunteer. After settling in New York, Jacobs took a job with Project Achieve, overseeing recruitment and education for the last phase two HIV vaccine trial conducted by the NIH. In 2010, Jacobs learned about the results of the iPrEx (Pre-exposure Prophylaxis Initiative) study, the first randomized clinical trial of PrEP. After analyzing the data and attending a PrEP forum, “[t]he light bulb went on,” he says. His seven-year relationship had just ended. Suddenly single and back on the dating market, he asked himself, “How long do I need to be afraid of HIV? How long do I have to worry?” In his mind, “HIV started to feel more like a when than an if.” So he decided to talk to his doctor about PrEP, who prescribed the medication for him off-label. In 2011, Jacobs started taking Truvada for PrEP. As open and honest about taking PrEP as Jacobs is today, back then it was a different story. “PrEP in 2011 was not FDA-approved. I was afraid if I was open about taking it, my insurance might cut me off.” So he kept it to himself, until he ran into a friend who told him he had been recently diagnosed with HIV. Jacobs was unnerved by the news. He felt he had failed his friend by not telling him about PrEP. “I cannot live with that happening again,” he vowed. That was the moment Vito Russo’s influence kicked in and Jacobs started taking action. He began searching for an on-line platform to disseminate information about PrEP. He found it on Facebook. In 2013, Jacobs established the group, PrEP Facts: Rethinking HIV Prevention & Sex. “It was a call to action for me and a call to education for the rest of the world,” Jacobs declares. His goal was to start new conversations, answer questions and share the latest information about PrEP, hoping “to propel DECEMBER 2015 • A&U
this change in a grass-roots social media way instead of relying on the powers that be to do it for us.” He anticipated a few hundred members would join the group. “Much to my surprise interest and participation snowballed, and it’s taken on an international role in awareness and discussions about PrEP.” He never expected the Facebook group to be at the center of a political movement. Fueled by opposition to PrEP from high-profile critics like AIDS Healthcare Foundation President Michael Weinstein, people on
PrEP and those supporting it got fired up. PrEP Facts has become a forum for the hot-button issues around Truvada—condomless sex, stigma, access, health insurance coverage, and patient assistance programs. It has also served as a springboard for Jacobs to become a leading global advocate and spokesperson for PrEP—most notably in mainstream media outlets including MSNBC, The New York Times, USA Today, NPR, and New York Magazine. He has spoken about PrEP at the 2015 International AIDS Society Conference (IAS) and the 2015 Annual Conference on
Retroviruses and Opportunistic Infections (CROI). He’s conducted trainings for the New York State Department of Health, and he’s embarking on a series of PrEP trainings for medical providers so they can better understand the consumer point of view. Jacobs is optimistic about the future of PrEP and its prospects for wider implementation, but he acknowledges that changes like this take time. “We are already seeing a trajectory of people starting to use PrEP and people learning about it. We’re seeing some shifts in the medical profession, and they are beginning to acclimate to this new paradigm of prevention. This is a radical shift from the last thirty years!” He’s also encouraged that PrEP is becoming part of our social consciousness, pointing out a recent storyline on ABC’s How to Get Away with Murder— the first primetime network television program to include this. “Things like that need to keep happening.” He would like to see a superstar diva talk to young people about PrEP. Jacobs envisions someone like Rihanna or Beyoncé saying, “If you think you could be at risk for HIV, think about this. Learn about this.” The bottom line for integrating PrEP into our HIV prevention discussions, Jacobs believes, is facilitating “more complex and intelligent discussions about sexual intimacy and pleasure…and approaching this from a respectful perspective rather than a moral one. It doesn’t have to be all or nothing. It doesn’t have to be a dichotomy between condoms and PrEP,” he says, asserting that there are a lot of people who use both. “When I began taking PrEP, I was going through the process of beginning to unpack thirty years of fear.” Now he’s grateful and truly inspired to change people’s minds. “At my funeral I want people to say they had better sex because of me,” he imagines. “And that better sex helped them to be more proactive and empowered in other areas of their lives.” For more information: www.facebook.com/ groups/PrEPFacts/ and www.damonljacobs.com. Chip Alfred, A&U’s Editor at Large, wrote about People Over 40 on PrEP for the October issue of A&U.
On the Road Cincinnati Exchange Program Dispenses Needles & Hope for Harm Reduction
s I was speaking with Judith Feinberg, MD, about her mobile needle exchange program in Cincinnati, President Obama was next door in West Virginia, announcing steps to fight drug abuse, especially cheap, injectable drugs that are growing exponentially throughout Appalachia. Feinberg hoped his speech would be a turning point to bring more compassionate and reality-based solutions to addiction and its companion dangers of overdosing and HIV and hepatitis C infection. Because for the past ten years, she feels like she’s been fighting the growing IV drug use epidemic in Cincinnati alone. By day, Dr. Feinberg is a professor of medicine at the University of Cincinnati College of Medicine and, also by day, she runs a needle exchange and harm reduction program called the Cincinnati Exchange Program (CEP). Since February 2014, CEP—it’s just Feinberg and one paid staff member—has provided nearly 50,000 clean needles to
addicts. They’ve also offered on-the-spot testing for hepatitis C, HIV, and, for those who test positive for either infection, pregnancy screening. In addition to clean needles, Feinberg and her program manager, Libby Harrison, offer “cookers” and cotton used to heat and filter the drug, and teach clients how to safely use them. This is important because hepatitis C lives on surfaces for weeks and increases the risk of infection. They do all this in a donated 1997 motor home that they drive throughout the Cincinnati area three days a week, three hours a day. A harm-reduction bargain CEP had a start-up budget of $50,000, a grant from Interact for Health, a local foundation. The project received an additional $48,000 two-year grant in 2014 from the Ohio Department of Health that let them provide nasal naloxone (trademarked as Narcan) to prevent fatal overdoses. Of more than 500 IV drug users they
have helped, Feinberg says around ten percent have sought treatment and gotten clean. Harrison has even accompanied more than a dozen clients to treatment. Usually clients are in groaning and puking throes of withdrawal, because most treatment centers require addicts to be clean at least twenty-four hours before arriving. Dr. Feinberg says that, compared to the more than $100,000 it costs to cure a person of hepatitis C, and far, far more if they develop advanced liver diseases, the money spent so far on CEP is a bargain. When asked if the program has enough money to meet the need in Cincinnati, she replies in her fiery native New Yorker accent with at least ten no’s, “and five exclamation points, write that down.” With the exception of Governor Kasich’s “Start Talking” program that began last year, no statewide money has been allocated to combat drug abuse and promote harm reduction. Feinberg says “Start Talking,” which focuses on encouraging Ohio youth to resist drugs by talking with peers and adults is “a nice, politically acceptable PR campaign that makes the state look like it cares,” but does nothing to help those who are already addicted. Simply put, the political will is not there to fund needle exchange and other harm reduction efforts. And despite the success the CEP has had in its limited area on a shoestring budget, politicians are still, in Feinberg’s words “not interested in treating addicts as human beings.” Libby Harrison (left), program manager for Cincinnati Exchange Project, and Judith Feinberg, Medical Director of CEP, stand in front of the initiative’s van.
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photos courtesy University of Cincinnati
by Larry Buhl
What’s the matter with Indiana? And Kentucky? And Ohio? The Centers for Disease Control and Prevention shows that heroin-related deaths tripled from 2010 to 2013, with the highest rate in the Midwest and Appalachia. Earlier this year, the rural IV drug crisis reached national attention as Indiana reversed its ban of syringe exchanges in the wake of a spike in new cases of HIV among drug users in one southern county. The epidemic in the tristate area took off when government efforts to shut down illegal “pill mills” like the infamous clinic in nearby Portsmouth, Ohio, made opioid painkillers harder to obtain. Trouble was, the users were addicted and went searching for a cheap fix. For many, the new drug of choice, or necessity, became black tar heroin from Mexico, costing about $10 on the street. In Scott County, Indiana, the problem is Opana, also known as Oxymorphone, which produces a heroin-like high that’s more potent than Oxycontin, the prescription drug users originally got hooked on. The communal way these drugs are used has helped spread HIV and HCV rapidly through social networks. Feinberg has seen the problem coming since 2005, when she noticed injection of opioids as the common denominator in heart patients. As an infectious disease expert she knew the risk of contracting hepatitis C and HIV from sharing unclean needles and injection paraphernalia, and she suspected that the area would soon face a massive DECEMBER 2015 • A&U
health crisis. She was correct. The rate of hepatitis C cases in Cincinnati’s Hamilton County increased fifty-eight percent from 2009 to 2013. But politics delayed funding for her proposed needle exchange project for years. “If I had been able to do this back in 2006, think of how many lives I could have saved.” What’s the matter with politicians? Even now, though Feinberg operates the clinic out of private funding, public officials still find ways of shutting her down, thanks to NIMBYism and a crazy-quilt of overlapping jurisdictions in the Cincinnati area. In Hamilton county, you need the approval of each of five health departments, plus buy-in from the mayors, prosecutors and sheriffs, all who must answer to constituents who don’t want “those people” accessing needles in their town. “I had a county commissioner here tell me that needle exchange is the third rail of politics,” Feinberg tells me. “Basically, politicians are cowards.” Federal funding is just as difficult to obtain thanks to Congress, which reinstated a needle exchange funding ban in 2011. The irony is, an organization can apply for federal funding for harm reduction programs like syringe exchanges, but can use the money for everything except the syringes. Despite outdated public perceptions that heroin addiction is based in poor inner city areas, the twenty-first century heroin epidemic is largely white, small town, suburban, rural, and middle class. “Over ninety
percent who come to us are white, and some are from well-off families,” Feinberg says. “More than half are employed.” Not that it should matter what groups are afflicted by addiction, but it’s the old perception that it’s “the other” who shoots opioids at the basis of the bias that’s kept needle exchange programs so controversial. It’s not Feinberg’s first uphill battle in public health. In fact, she says the reactions to today’s IV drug epidemic and subsequent spike in HIV and HCV mirror the early years of the AIDS epidemic where patients were stigmatized and ostracized and told they deserved what they got. “Addiction is criminalized in the country,” Feinberg says. “But it’s a disease. It’s a chronic, relapsing brain disease and not a moral failing. People’s brains are rewired after taking (opioids) for the first time. And we’re going to be seeing this epidemic all over, not just in Ohio, Indiana, and Kentucky.” Feinberg is upbeat, even passionate when talking about her duty. But she admits that she’s tired of fighting against the system to save lives. In addition to her day job and her other day job, Feinberg has spent hundreds of hours getting buy-in from mayors, supervisors, and local boards of health to let her CEP mobile van park in their suburbs. “The city is letting me, one citizen, take on the burden of what is a public health crisis, and that’s just wrong.” Larry Buhl writes the monthly Hep Talk column for A&U.
Protecting One’s Heart
s people are living longer with HIV, researchers have been increasingly attending to questions surrounding the management of comorbidities, such as kidney disease, liver disease, and cardiovascular disease (CVD). Some of those questions have focused on treatment, of course, but some have focused on prevention, and, in a new study focused on cardiovascular disease (CVD), specifically who is at risk. We know that individuals living with HIV on the whole are at greater risk than the non-HIV-infected population. However, that higher risk may fly under the clinical radar if physicians only look at traditional risk factors (think, smoking, high blood pressure, diabetes, high cholesterol), instead of also attending to non-traditional risk factors that come with living with the virus, such as plaque build-up and chronic inflammation, which may play a part in increasing the risk for CVD. What if we could reduce the risk of CVD before patients progressed to something like a stroke or myocardial infarction with a prevention strategy that addressed non-traditional risk factors alongside traditional ones? Seeking this answer, REPRIEVE (Randomized Trial to Prevent Vascular Events in HIV) holds the potential to significantly change long-term health outcomes in an aging HIV-positive patient population for the better. A first-of-its-kind, landmark study, REPRIEVE is currently in the process of enrolling 6,500 participants across approximately 100 clinical research sites, mostly in the U.S. The primary endpoint of the randomized trial is to see if a daily dose of pitavastatin can reduce the risk of CVD and prevent vascular events in HIV-positive individuals with relatively low traditional risk factor scores and who would not otherwise be prescribed statins for high cholesterol and/or known heart disease. Participants will be counseled about reducing traditional risk factors, of course, but the spotlight will be on non-traditional ones.
Primarily funded by the NIH Heart Lung and Blood Institute (NHLBI) and supported by the NIH Division of AIDS (DAIDS), REPRIEVE is enrolling HIV-positive individuals who are between the ages of forty and seventy-five; on stable antiret-
roviral therapy for at least six months prior to entering the study; do not have a history of CVD (including heart attack or stroke); and have not been recommended for statin therapy or currently using a statin. The study is not excluding for viral load and accepting patients with a CD4 count over 100, thus seeking a broad study population that can produce generalizable results. REPRIEVE’s co-principal investigator Steven Grinspoon, MD, a leading researcher, whose work has advanced our knowledge of HIV-related metabolic and cardiovascular complications as well as the treatment of lipodystrophy, talked with A&U about the impetus for the study, study eligibility, and the potential of pitavastatin as a preventative strategy for CVD. “Prior studies done over the last few years suggest an increased risk in cardiovascular disease in patients living with HIV on the order of fifty to 100 percent in carefully constructed cohorts comparing HIV vs. non-HIV [patients], controlling for traditional risk factors. Traditional risk factors seem to account for about twenty-five percent of the excess risk but
non-traditional risk factors may account for a preponderance of the risk,” said Dr. Grinspoon. “We want to be able to prevent the disease in those who do not know they have the [cardiovascular] disease and to prevent that excess risk by a strategy that attacks both traditional risk factors and, at the same time, non-traditional and potentially inflammatory risk factors.” Previous research, including his own, brought these non-traditional risk factors, such as premature plaque build-up and chronic inflammation, to light. Plaque can build up within the arteries and eventually harden and narrow them, reducing blood flow; and/or the plaque can erode and rupture, exposing its contents, cholesterol, calcium, inflammatory cells, and other material, to the bloodstream. In an earlier study, whose results were published in AIDS in 2013, researchers, including Dr. Grinspoon, used coronary CTA (computed tomography angiography). Data “showed that the presence of plaque in HIV patients, carefully matched to nonHIV patients, is about twice as high, approximately sixty percent vs. thirty percent, with an atypical high-risk morphology,” noted Dr. Grinspoon about the variation and degree to which the plaque is vulnerable to rupture, which may be the culprit behind increased cardiovascular events. “We may have a situation where relatively young patients are having this atypical plaque with vulnerable features in association with inflammatory markers. And these are people for whom the disease is sub-clinical—they don’t have known clinical disease; they’re not having symptoms. That’s exactly the kind of patient we want to recruit into REPRIEVE and try and prevent that sub-clinical disease from becoming clinical, from becoming an actual event like a myocardial infarction.” ASCVD (atherosclerotic cardiovascular disease) risk scores, which are based on new 2013 American Heart Association guidelines for CVD, will be calculated for study candidates. The risk scores are based on traditional continued on page 60 A&U • DECEMBER 2015
illustration by Timothy J. Haines
the REPRIEVE study aims to prevent cardiovascular disease
Mind the Gaps a new nastad program aims to get more hcv patients covered
guidelines, but none for hepatitis C, and there are arbitrary restrictions. If you’re co-infected with HIV, there are government programs that fill the gap, but for mono-infected people [with HCV], there’s nothing right now.” It’s not just hepatitis C patients that will benefit from the efforts of HSI. The HSI team is focusing on closing gaps by focusing on four areas: 1. Health insurance coverage and access. By supporting the AIDS Drug Assistant Program (ADAP) and other HIV and viral hepatitis programs, HSI aims to get more people with these diseases covered and
into treatment. The team is searching for and supporting plans that include HIV and viral hepatitis medications, services, and providers. And HSI is identifying payment and delivery system reform models that include community-based public health services. 2. Provider sustainability. The HSI team works with state health departments to pursue contracts and other partnerships with public and private payers, and go after new streams of revenue to sustain services. 3. Insurance claims data. HSI works with state HIV programs to leverage private insurance and Medicaid claims data to improve the ability of states to measure HIV and viral hepatitis outcomes and progress.
4. PrEP financing. While PrEP is a promising tool in ending the HIV epidemic, it is a no-man’s land of federal funding. CDC and HERSA funding only covers patients with a diagnosis of HIV. But because PrEP is used to prevent infection in HIV-negative people, federal funding does not cover it. HSI is a new initiative, just announced in October, and the details on how exactly those efficiencies are going to be built and how “systems and payers are effective partners in ending the HIV and hepatitis C epidemics,” as their press materials say, are still emerging. Some of NASTAD’s proposals for streamlining hepatitis C and HIV care and prevention are detailed in its recent white paper, “Modernizing Public Health to Meet the Needs of People Who Use Drugs.” The paper suggests creative payment and delivery reforms, as well as ways of pushing broader health systems to be more accountable for meeting the health needs of people who use drugs. The real success of NASTAD’s Health Systems Integration effort will be determined by how many people with HCV and HIV or are at risk for either will be able to access the care they need, affordably. To that end, Kilelea believes that within two years public and private payers will take on more responsibility for ending hepatitis C and HIV, and Medicaid will be playing a larger role in these services. She also believes that more states will expand Medicaid as part of the Affordable Care Act. And, she says, testing for hepatitis and HIV will be routine in the next two years with the efforts of her HSI team. “When people go to primary care, they should routinely get tested for these viruses.” For more information on the HSI program, visit www.NASTAD.org. 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 • DECEMBER 2015
illustration by Timothy J. Haines
my Killelea of the National Alliance of State and Territorial AIDS Directors (NASTAD) sees healthcare coverage gaps everywhere, and as director of NASTAD’s new Health Systems Integration (HSI) team, she plans to close some of them. Some of those gaps speak to the success, not failure, of the Affordable Care Act (ACA). They include low-income people left out of health coverage in states without expanded Medicaid under ACA and the lack of federal and state coverage for people with the hepatitis C virus (HCV). Killelea tells A&U that there are now more people who qualify for private insurance and Medicaid, but helping them take advantage of the coverage they’re entitled to—especially testing and treatment for the hepatitis C virus—is another matter. “Many more people are covered with insurance now that weren’t before the ACA, and for people who had viral hepatitis or HIV, (the ACA) has been a lifeline. But with all those people newly covered, health insurance literacy becomes an issue. It’s one thing to have an insurance card and it’s another to know how to use it.” Teaching the newly insured about the benefits of insurance and actually using it, instead of going to the emergency room—NASTAD says a large number of newly-insured are still doing this even though they don’t need to—is just one area NASTAD’s HSI team will be focusing on. There’s also the matter of medications, especially the newer life-saving antivirals for hepatitis. Private insurers are putting them on high specialty tiers with high copays that keep them out of reach of most people who need them. Killelea says HSI can put pressure on regulators to stop this kind of price gouging and on insurers to bring at least some of their newer hepatitis meds into a lower pricing tier. “We have federal HIV treatment
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One Drug, Many Possibilities a new agent may assist in the fight against hiv & other viruses
by a small biotech company named Arno Therapeutics. Additional in vitro studies are underway to determine more about how AR12 affects viruses, but what is known is that AR-12 works by affecting a type of chaperone protein called “heat shock” proteins. What these proteins do is assist in the folding and refolding of proteins and discarding of unusable proteins. Viruses have to hijack host cell mechanisms to produce more copies of themselves. Parts of these important steps in viral replication have been demonstrated to be dependent on various heat shock proteins. GRP78 (also known as immunoglobulin heavy chain binding protein or BiP) is a heat shock protein and is downregulated by AR-12. This creates a cascade of events that leads to the improper folding of proteins and apoptosis (cell death). Downregulation, according to an on-line source, is “the process by which a cell decreases the quantity of a cellular component, such as RNA or protein, in response to an external variable.” In this case, AR-12 is the external factor. AR-12 also affects other heat shock proteins such as HSP70, HSP90 and HSP27. In the poster presented in October at the EACS Conference, data was presented which outlined AR-12’s potential use in HIV infections. Studies were conducted in peripheral blood mononuclear cells to examine the effect of AR-12 against HIV-1,
HIV-2, and six drug-resistant strains. AR-12 showed an antiviral effect against all strains with AR-12 inhibiting HIV with fifty-percent inhibitory concentrations that could be achieved in patients based on the prior clinical study. The poster states: “The novel antiviral MOA of AR-12 offers a new promising approach to (1) enhance existing HIV treatments through combination therapies, (2) to circumvent existing resistance mechanisms and (3) to address co-infections with multiple viral pathogens.” Although AR-12 has only been analyzed in vitro in regards to HIV and other viruses, it shows promise due to its unique mechanisms of actions and its potential to treat numerous illnesses that span from virus-induced cancers to various infectious diseases. As efforts continue in analyzing this drug, I hope to see further developments that will show AR-12’s potential use as a new, first-in-class drug for HIV as well as other diseases. 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. A&U • DECEMBER 2015
illustration by Timothy J. Haines
very once in a while I come across research on a drug that may not be exactly “cure” research, but looks as though it may hold such importance that I want to include it in this column. AR-12 is one such compound. I first became aware of this investigational agent during the poster session at the 28th International Conference on Antiviral Research in Italy this past April. This research caught my eye, as it described a compound with not only a very unique mechanism of action (the way it works) but also another very intriguing aspect to it. The drug holds the possibility of not only treating HIV, but several other viruses as well. These viruses include: influenza, Lassa, Nipah, Marburg, Ebola, measles, mumps, coxsackie, CMV, and Chikungunya. Can you imagine in the setting of both the developed and the developing world, where one drug that could treat numerous potentially deadly viruses that affect millions of people each year? The implications of such an agent could be huge, giving clinics and doctors in rural areas a tool to combat many different viruses by keeping one medication on hand or to treat a person who has more than one virus with a single medication. Currently, AR-12 has orphan drug designation in Europe for two infectious diseases, cryptococcosis and tularaemia. New data presented at the 2015 EU AIDS Conference (EAC) shows AR-12 could potentially be used in people who have been on numerous other HIV antiretrovirals and who have developed resistance to a number of drugs. Or it could be used in people with wild type HIV-1 or HIV-2 who are completely treatment-naïve. With many people unable to take some of the available NRTIs, NNRTIs and protease inhibitors (and thus some of the combination drugs) because of side effects or drug resistance, AR-12 could help to create a whole new drug regimen. AR-12 is a broad-spectrum antiviral, which means, as described above, it may have an effect on numerous viruses. It works by utilizing a mechanism that no other HIV drug presently in use or in development (that I’m aware of) uses. AR-12 is a drug originally investigated as a potential for cancer treatment and made
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E R U T L U C S THE
Mister Owita’s Guide to Gardening : How I Learned the Unexpected Joy of a Green Thumb and Open Heart Carol Wall Amy Einhorn Books/ G.P. Putnam’s Sons
t first, Carol Wall and Giles Owita seem light years away from ever becoming friends. Carol is a high-school English teacher and a breast cancer survivor with absolutely no interest in gardening. Giles, a transplant from Kenya, worked for the government there; here in this country, however, he works a number of jobs, and gardening/landscaping is one of them. Carol, who “never liked getting my hands dirty,” has a real antipathy toward flowers that dates back to her older sister’s death many years earlier: “I preferred green things that grew in the ground, things that never bloomed only to fade.” Her bout with cancer has only sharpened this feeling. When she hires Giles, she is simply looking for somebody to neaten up her yard. Giles changes that. A gentle, thoughtful man, he slowly cures Carol of her “dread of flowers,” showing her how to garden and love it as he does. Carol begins to share more of her life—her parents’ illnesses and deaths, the recurrence of her cancer—with him. “Illness comes into each life,” he tells her, “but we must not let it define us.” Only later does Giles let her in on his own secret: He has been HIV-positive for fourteen years. Back then, he reminds Carol, such a diagnosis was tantamount to “a death sentence”: He and his wife, Bienta, have “lived in constant dread of discovery”….The stigma has been almost as bad as the disease itself. Bienta has had to live with that, and worried that word would spread and the children would be
treated as lepers.” Carol never asks Giles how he became HIV-positive; instead, she asks how she can help. She wants this man who has given her so much “to know that I would never reject him. I would never turn away.” And she doesn’t. This story of a wounded healer—of a man who showed his friend how to push past fear and find joy and comfort in growing things—will blow you away with its honesty and emotion. It is The Secret Garden with twist that will break your heart open and change the way you see things. —T.J. Banks
He has, however, not only come to terms with having the disease but is deeply thankful because it brought the others into his life. Interwoven with their stories is an exposition of the HIV crisis in South Africa. There have been an estimated 300,000 AIDSrelated deaths in the country, thanks to poor government handling of the situation; the politicization of HIV; the denial that the virus causes death; and the slow roll-out of life-saving drugs. But in 2009, a new government prioritized the HIV issue and began getting the drugs out to the people who needed them. This is an inspiring film about people who refuse to let their disease define them or to stop living because of it. Nthuthu and Thembi accompany Nomfundo, a lesbian, to a gay pride parade. It is, Nthuthu says, “my first
Positively Beautiful Directed by Diveena Cooppan Mo Berry Productions/ Wicked Delicate
hen you come to the edge of all the light you have known and are about to step out into the darkness,” someone once said, “faith is knowing one of two things will happen….There will be something to stand on or you will be taught how to fly.” Diveena Cooppan’s film Positively Beautiful illustrates that point vividly and poignantly. It follows six South Africans—Thembi, Nthuthu, Zanana, Khaya, Nomfundo, and Jan—who have become friends, united by their HIV-positive status. Each has a powerful story to tell. Thembi, a nurse, contracted the disease while giving a baby an injection. Nthuthu’s boyfriend hid his illness from her, purposely sleeping with her because he believed that doing so would “cure” him of the disease. Jan, the oldest South African with HIV, was diagnosed when he was in his early sixties. “I thought, ‘The bloody hell, I’m a grandfather,’” he recalls. “’These things don’t happen to old men, particularly white men.’”
pride. I’m not coming out in any way. This is my friend, and I understand her.” Khaya marries a widow whom he meets at an HIV conference: Her children regard him as a second father, and he is especially attached to her son, Linton, who “is also living with HIV.” We see the friends throwing a birthday party for Thembi and toasting each other for having “survived the storms.” They all have been taught how to fly in the dark, and they do it beautifully. —T.J.B. T.J. Banks is the author of Sketch People, A Time for Shadows, Catsong, Houdini, and other books. Catsong was the winner of the 2007 Merial Human-Animal Bond Award. A&U • DECEMBER 2015
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A Calendar of Events
Treatmen Horizons continued from page 52
county-wide annual World AIDS Day Food Drive extends beyond December 1 to provide for individuals living with HIV/AIDS in need. Now through December 25, except where notes, bring non-perishable foods and personal hygiene items to various locations across Los Angeles County and Southern California: Comerica Bank (twenty-five Southern California locations; SAG-AFTRA (November 16-December 11), 5757 Wilshire Blvd., 7th Floor, Los Angeles 90036; Pavilions (two locations in West Hollywood): 8969 Santa Monica Blvd. and 727 N. Vine St.; Vons/ Pavilions has agreed to sell bags of groceries through December 22 for $7 as part of their Help Us End Hunger Holiday Food Drive and has designated APLA as the beneficiary of these bags of food. Food and items will be distributed to clients via APLA’s eight
risk factors. “We are taking patients at less than ten percent—those in a low to moderate range for whom statins would not be clinically necessarily indicated, so there’s equipoise in the study to look at that group for whom there’s no definitive recommendation for statins, whose doctor may not prescribe them but for whom we think they may be useful [to prevent CVD].” REPRIEVE is also focusing on the age range of forty to seventy-five in order to focus on those who would potentially maximally benefit from the preventative strategy. Noted Dr. Grinspoon: “Where the relative risk really ticks up strongly is in patients over forty, and particularly between forty and seventy is the greatest preponderance of excess risk in the HIV vs. non-HIV [patients]....” Using pitavastatin is a strategy “designed to both lower traditional risk factors like lipids, etc., but also to simultaneously reduce inflammatory markers which we think are contributing to the excess risk,” said Dr. Grinspoon, explaining that pitavastain, the newest in the statin class, was selected for the trial because it is metabolized in such a way—glucoronidation as compared to CYP metabolism, to be specific—that its bioavailability is not affected by antiret-
Vance North Necessities of Life Program (NOLP) food pantries across Los Angeles County. Every year, NOLP helps thousands of people living with HIV/AIDS and distributes nearly 140,000 bags of groceries annually. A complete list of all locations where you can donate is posted on: www.apla. org/fooddrive. APLA is also gearing up for its 20th Annual Toy Box Party. Created by Curt Sharp, Alan Friel, and Dana Miller, the event asks you to bring an unwrapped toy as price of admission and snap a pic with a hunky Santa Claus (or two). APLA will distribute toy donations to the families of its clients as holiday gifts. American Horror Story creator Ryan Murphy, Emmy-winning producer/director Alan Poul, and The Abbey Food & Bar Owner David Cooley, among others, will add to the cheer by acting as “elf hosts.” Date: December 13; time: 4–8 p.m.; location: SBE’s The Redbury, 1717 N. Vine St., Los Angeles, California. For more information, log on to: www.apla.org/toybox.
roviral therapy. Neither does pitavastatin affect the bioavailability of antiretrovirals. Both can do their work in peace, in this regard. Additionally, notes Dr. Grinspoon, much was learned about pitavastatin from the INTREPID trial that makes it a good candidate: It is highly efficacious when it comes to lowering cholesterol and does so very safely, without aggravating glucose like some of the earlier statins, which have been associated with increased blood sugar levels and thus increased risk for the development of Type 2 diabetes. REPRIEVE is also tailoring its study to account for statins’ known effect on liver function. “Any statin can affect liver function but this is rare [as emphasized in new statin guidelines]. Once you exclude patients with significant liver disease, statins are unlikely to have a significant impact on liver function.” REPRIEVE is thus excluding participants with significant liver dysfunction. “By design patients entering REPRIEVE will have reasonably good liver function, minimizing the chance of adverse effect. Nonetheless, to be cautious, we are checking liver function at one month and twelve months. We have an algorithm in place to manage any liver toxicity that emerges in individual
patients, but we think it is extremely unlikely. We have over 600 patients in the trial so far, and we have not seen any major impact on safety thus far, so we’re pleased.” REPRIEVE is also looking beyond cardiovascular endpoints. “We have a hypothesis that statins, by reducing inflammation, will improve kidney function, liver function, and other non-cardiovascular endpoints.” Dr. Grinspoon continued: “In addition we have a substudy of 800 people out of 6,500 enrolled in REPRIEVE. Those 800 are getting CT angiography at baseline and two years and we’re hypothesizing that statins will reduce plaque in relation to events and also in relation to inflammatory biomarkers that we’re studying, including monocyte and T-cell activation. In this way, we hope we’ll be able to identify certain biomarkers that can help predict the response to statins, such that we can use those biomarkers to screen people in the future who might benefit from statin therapy.” As mentioned, the trial is still enrolling and those interested in participating can log on to: http://reprievetrial.org/ contact. The URL of the trial’s informational website is: www.reprievetrial.org. Chael Needle wrote about switching regimens in the November issue. A&U • DECEMBER 2015
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answer, but I think there’s something to be said about money and the power that’s associated with it. It’s inherently toxic. To have more than others is somehow unjust,” she warns. “It comes with generations that become less and less adept and skilled at real life. There’s a trade-off. I want so much to benefit in the best possible way from the gift that comes with this opportunity.” Aileen halts and briefly glances out through the thick wooden doors that enter onto the hallway and a floor-to-ceiling Palladian style window. “You know, I’m just in awe of what a wondrous incredible life it has been, but how diligent I have to stay and remain for it’s easy to be persuaded by stuff.” Having joyfully consumed our meal some time ago, we have remained at the table conversing. Aileen rises and carts dishes out to the kitchen. While helping, I inquire about her current meds. “Well, I’m now waiting to switch over to a single pill, but I’ve been taking Tivicay, Truvada, and Valcyclovir. My health is good,” she confirms, rinsing off plates and stacking them in the dishwasher. She had many opportunistic infections early on. “Those were hard years,” she bemoans, listing off some of them. “I’ve had fungus, multi-drug resistant tuberculosis—that was a horrible one! I’ve had a lot of issues with my lungs and I have had neuropathy in my feet and legs. It’s amazing that I am well today!” Aileen comments on the high HIV infection rates among young people today. On the issue of prevention, she’s adamant. “We educate through fear!” she pronounces. “Joy has a better way of taking root.” There’s a short silence. “At the core of infection is not knowing oneself.” She scrubs the last dish and places it in the dishwasher then asks if we’d like a tour of her home. The four of us meander through her casually elegant Paul R. Williams two-level hacienda. Built in 1929, the home affords captivating views. Abundant with meandering indoor and outdoor hallways, the home has eight bedrooms and eight baths. Though she has an apartment in the arts district of downtown Los Angeles, Ojai is Aileen’s retreat. Usually the place bursts with family, like her two sons, Caleb, thirty-two, who builds and works on cars and bikes and lives close to her in Los Angeles, and Andrew, thirty-one, who writes music and directs films, and lives with his wife on a ranch in Sylmar. “I’m a very lucky parent. I have incredible kids. They’re both divine souls and we’re all very close,” she confides proudly, perched on the side of a trickling fountain. It sits in the middle of a courtyard of an olive orchard, flowers, and manicured shrubs. It’s the focal point of the house and adjacent to the luscious hefty-size rose garden. Aileen also has a thriving relationship
with her ex-, Chris Wilding, and his wife, who join in on family get-togethers. “Chris is a beautiful human being. I was harsh on him. I really roughed him up…,” she kids out of embarrassment. “We went through some really bad years, guys. I wasn’t fit for a relationship. I needed some serious work!” As Davidd and Sarah lag behind, Aileen leads me outside to the swimming pool, offset by a massive old lazy oak tree. I am overwhelmed by the stunning view. We walk past the pool to the edge of the hill and quietly stand for a few minutes before the Ojai hills. Aileen suspends silence and asks if I am in a relationship. She’s not only eager to learn about others, but to learn about herself through you. After I answer, I turn the question back on her. The introspective decade has gladly brought her celibacy. “There are periods where I think I would love to date now, but then in a minute,” she snaps her fingers, “I become terrified.” She peeks around for Tara who has followed us, and spots her. “Friends tell me that it’s different today and somewhat easier, but I don’t believe it. I’m not afraid of rejection, I’m fearful of being vulnerable in front of others. “Oddly enough, some things have changed enormously in my life, like the value I now place on life. Human beings are very interesting. We have patterns that we fall into and things get triggered,” she insists with measured cadence. “One thing triggers another pattern and all of a sudden your alignment is all out of whack.” She contemplates. “I do have the tools [to have a relationship] but don’t know how to activate them,” she offers, having considered therapy. “After being with myself for ten years I do have the wherewithal and can come into a relationship as a whole human being.” Aileen confides that she’s attracted to “the package”—whether it’s male or female. She had a girlfriend before she was diagnosed. When Aileen revealed to her that she was HIV-positive, “She immediately asked for her jeans back!” Aileen howls and we all join in. “Ever since I was a little kid I always identified more as feeling like I’m more of a boy. I wasn’t a tomboy. More of a goody-twoshoes to please my mom. I didn’t like the idea
of hooking up with boys when I was young. Then I thought maybe I am gay. But I know that I’m not anything that has a label,” she affirms. Her face softens into a smile. “That is not my truth. My truth is that if it resonates in a way that brings joy and makes me laugh, it doesn’t matter who it is.” With that, she asks, “How about some tea and dessert?” In anticipation, the four of us congregate back at the dining table. The vegan, gluten-free dessert is a coconut yogurt parfait, sweetened with agave and layered with buckwheat granola and berries. Absolute heaven. “I’m addicted to it!” she beams, pouring hot water into cups, serving a variety of herbal teas. She offers a toast and we all clink cups. “I love how food brings us together,” she quips, sitting down. “That’s what’s great about this house, just like us sharing right now. There’s no distraction. We’re just fully present for hearing each other and for celebrating each other’s lives in this moment in a full way. It’s awesome.” As the sun fades, we prepare to depart. Standing together on the stone-laid entranceway, Aileen turns to me. “So many extraordinary things have resulted from this epidemic. For me, the most direct benefit has been really witnessing,” she pauses, then with surgical precision utters in a soulful voice “—in… my… entire… being…on…a…cellular level—that LOVE is far greater than any other power. Gay men came together and this showed me that love conquerors all,” she revs spiritedly, with her nuclear-wattage energy. “Dude, it made me turn a page in my own evolution to not be afraid. Or even if I am afraid, not to let my fear come before my ability to express my love.” Dann Dulin interviewed Jonathan Groff for the November cover story. A&U • DECEMBER 2015
DECEMBER 2015 • A&U
[a portrait by sean black]
Timothy Ray Brown “My case of being the first person in the world to be cured of HIV has become a proof of concept that curing HIV is possible and I will not give up until everyone with HIV is cured of it.”
Timothy Ray Brown is the first person in the world cured of HIV. He is co-founder of the Cure for AIDS Coalition, a public benefit corporation—a first-of-its-kind organization in the world—whose one and only mission is to find a cure for AIDS, as well as the co-founder of Cure Report (for more information about both log on to: www.cureaidsreport.org). Timothy also participated in VICE Special Report: Countdown to Zero, premiering on HBO on December 1, World AIDS Day, at 9 p.m. (EST). Sean Black is a Senior Editor of A&U.
A&U • DECEMBER 2015
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