A&U July 2014 by A&U: America's AIDS Magazine

JULY 2014 • ISSUE 237 • AMERICA’S AIDS MAGAZINE

michael

URIE

CHAMPIONS THE ARTS AS THE KEY TO AIDS AWARENESS

PrEP School

IS IN SESSION

plus Harm Reduction in Georgia • Born Free Africa • HIV Vaccine Research • Kevin Truong • Zen Hospice Project

Taking the Lead on Hep C

IN AFRICAN-AMERICAN COMMUNITIES

What is STRIBILD? STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. It combines 4 medicines into 1 pill to be taken once a day with food. STRIBILD is a complete singletablet regimen and should not be used with other HIV-1 medicines. STRIBILD does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking STRIBILD. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.

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

• Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking STRIBILD, your hepatitis may suddenly get worse. Do not stop taking STRIBILD without first talking to your healthcare provider, as they will need to monitor your health. STRIBILD is not approved for the treatment of HBV.

• Take a medicine that contains: alfuzosin, dihydroergotamine, ergotamine, methylergonovine, cisapride, lovastatin, simvastatin, pimozide, sildenafil when used for lung problems (Revatio®), triazolam, oral midazolam, rifampin or the herb St. John’s wort. • For a list of brand names for these medicines, please see the Brief Summary on the following pages.

• If you take hormone-based birth control (pills, patches, rings, shots, etc).

• Take any other medicines to treat HIV-1 infection, or the medicine adefovir (Hepsera®).

• If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD.

What are the other possible side effects of STRIBILD?

• If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD.

Do not take STRIBILD if you:

Serious side effects of STRIBILD may also include:

• 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.

• New or worse kidney problems, including kidney failure. Your healthcare provider should do regular blood and urine tests to check your kidneys before and during treatment with STRIBILD. If you develop kidney problems, your healthcare provider may tell you to stop taking STRIBILD.

• You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions.

• All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking STRIBILD without first talking with your healthcare provider.

Who should not take STRIBILD?

STRIBILD can cause serious side effects:

• 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.

What should I tell my healthcare provider before taking STRIBILD?

• Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking STRIBILD. The most common side effects of STRIBILD include nausea and diarrhea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.

• If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in STRIBILD can pass into breast milk, and it is not known if this can harm the baby.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Brief Summary of full Prescribing Information with important warnings on the following pages.

STRIBILD is a prescription medicine used as a complete single-tablet regimen to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD does not cure HIV-1 or AIDS.

I started my personal revolution Talk to your healthcare provider about starting treatment. STRIBILD is a complete HIV-1 treatment in 1 pill, once a day. Ask if itâ&#x20AC;&#x2122;s right for you.

Patient Information STRIBILD® (STRY-bild) (elvitegravir 150 mg/cobicistat 150 mg/emtricitabine 200 mg/ tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information.

• Do not stop taking STRIBILD without first talking to your healthcare provider • If you stop taking STRIBILD, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking STRIBILD

What is STRIBILD?

Who should not take STRIBILD?

• STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD is a complete regimen and should not be used with other HIV-1 medicines. • STRIBILD does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood.

Do not take STRIBILD if you also take a medicine that contains: • adefovir (Hepsera®) • alfuzosin hydrochloride (Uroxatral®) • 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®) • oral midazolam • pimozide (Orap®) • rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®) • sildenafil (Revatio®), when used for treating lung problems • simvastatin (Simcor®, Vytorin®, Zocor®) • triazolam (Halcion®) • the herb St. John’s wort Do not take STRIBILD if you also take any other HIV-1 medicines, including: • Other medicines that contain tenofovir (Atripla®, Complera®, Viread®, Truvada®) • Other medicines that contain emtricitabine, lamivudine, or ritonavir (Atripla®, Combivir®, Complera®, Emtriva®, Epivir® or Epivir-HBV®, Epzicom®, Kaletra®, Norvir®, Trizivir®, Truvada®) STRIBILD is not for use in people who are less than 18 years old.

What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects, including: 1. Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take STRIBILD or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: • 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 2. Severe liver problems. Severe liver problems can happen in people who take STRIBILD. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: • your skin or the white part of your eyes turns yellow (jaundice) • dark “tea-colored” urine • light-colored bowel movements (stools) • loss of appetite for several days or longer • nausea • stomach pain You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. 3. Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take STRIBILD, your HBV may get worse (flare-up) if you stop taking STRIBILD. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. • Do not run out of STRIBILD. Refill your prescription or talk to your healthcare provider before your STRIBILD is all gone

What are the possible side effects of STRIBILD? STRIBILD may cause the following serious side effects: • See “What is the most important information I should know about STRIBILD?” • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking STRIBILD. Your healthcare provider may tell you to stop taking STRIBILD if you develop new or worse kidney problems. • Bone problems can happen in some people who take STRIBILD. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. • Changes in body fat can happen in people who take HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms and face may also happen. The exact cause and long-term health effects of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having any new symptoms after starting your HIV-1 medicine.

The most common side effects of STRIBILD include: • Nausea • Diarrhea Tell your healthcare provider if you have any side effect that bothers you or that does not go away. • These are not all the possible side effects of STRIBILD. For more information, ask your healthcare provider. • Call your healthcare provider 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 STRIBILD? Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, bone, or liver problems, including hepatitis B infection • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. - There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk with your healthcare provider about how you can take part in this registry. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take STRIBILD. - 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 STRIBILD can pass to your baby in your breast milk. It is not known if the other medicines in STRIBILD can pass into your breast milk. - Talk with your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements: • STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. • Be sure to tell your healthcare provider if you take any of the following medicines: - Hormone-based birth control (pills, patches, rings, shots, etc) - Antacid medicines that contain aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or after you take STRIBILD - Medicines to treat depression, organ transplant rejection, or high blood pressure - amiodarone (Cordarone®, Pacerone®) - atorvastatin (Lipitor®, Caduet®) - bepridil hydrochloride (Vascor®, Bepadin®) - bosentan (Tracleer®) - buspirone - carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®) - clarithromycin (Biaxin®, Prevpac®) - clonazepam (Klonopin®) - clorazepate (Gen-xene®, Tranxene®) - colchicine (Colcrys®) - medicines that contain dexamethasone - diazepam (Valium®)

- digoxin (Lanoxin®) - disopyramide (Norpace®) - estazolam - ethosuximide (Zarontin®) - flecainide (Tambocor®) - flurazepam - fluticasone (Flovent®, Flonase®, Flovent® Diskus®, Flovent® HFA, Veramyst®) - itraconazole (Sporanox®) - ketoconazole (Nizoral®) - lidocaine (Xylocaine®) - mexiletine - oxcarbazepine (Trileptal®) - perphenazine - phenobarbital (Luminal®) - phenytoin (Dilantin®, Phenytek®) - propafenone (Rythmol®) - quinidine (Neudexta®) - rifabutin (Mycobutin®) - rifapentine (Priftin®) - risperidone (Risperdal®, Risperdal Consta®) - salmeterol (Serevent®) or salmeterol when taken in combination with fluticasone (Advair Diskus®, Advair HFA®) - sildenafil (Viagra®), tadalafil (Cialis®) or vardenafil (Levitra®, Staxyn®), for the treatment of erectile dysfunction (ED). If you get dizzy or faint (low blood pressure), have vision changes or have an erection that last longer than 4 hours, call your healthcare provider or get medical help right away. - tadalafil (Adcirca®), for the treatment of pulmonary arterial hypertension - telithromycin (Ketek®) - thioridazine - voriconazole (Vfend®) - warfarin (Coumadin®, Jantoven®) - zolpidem (Ambien®, Edlular®, Intermezzo®, Zolpimist®) 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 STRIBILD without first talking with your healthcare provider. Keep STRIBILD and all medicines out of reach of children. This Brief Summary summarizes the most important information about STRIBILD. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about STRIBILD that is written for health professionals, or call 1-800-445-3235 or go to www.STRIBILD.com. Issued: October 2013

COMPLERA, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, the STRIBILD Logo, TRUVADA, and VIREAD 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. © 2014 Gilead Sciences, Inc. All rights reserved. STBC0076 03/14

Saturday, August 16, 2014

PERFORMANCES BY Giordano Dance Chicago, Hubbard Street Dance Chicago, Joffrey Ballet, River North Dance Chicago, Ensemble Español Spanish Dance Theater and Visceral Dance Chicago WORLD PREMIERES BY Randy Duncan, and Harrison McEldowney & Jeremy Plummer BENEFICIARIES AIDS Foundation of Chicago, The Dancers’ Fund, Making A Daily Effort and Agape Missions Inc. GALA TICKETS $250-$600 | PERFORMANCE ONLY TICKETS $25-$75

www.DanceforLifeChicago.org

M ED I A PART N E R S

| 312-922-5812

/DanceForLifeChicago

@danceforlifeChi

PHOTOGRAPHY Sandro | DANCER Andrew Murdock, Hubbard Street Dance Chicago

5pm Hilton Chicago’s Grand Ballroom 8pm Auditorium Theatre of Roosevelt University

c o n t e n t s July 2014

48 Cover Actor Michael Urie Talks to A&U’s Dann Dulin About Embracing the Arts as an Essential Tool to Project Compassion & Build Character in the Age of AIDS

Departments

Features 34 Gallery Visual AIDS Artists Turn Back Time 40 I AM Men’s Health Five Young Men Discuss First Steps with PrEP 44 Necessity: Mother of Prevention Born Free Africa Seeks to Halt Mother-to-Child Transmissions 46 Zen & the Art of Letting Go A Hospice Evolves with the Times 54 Take Action! NBLCA Mobilizes African-American Communities Around Hep C

Frontdesk

Mailbox

NewsBreak

Ruby’s Rap Kevin Truong

viewfinder 18

Poetry

Just*in Time

Brave New World

Essay

lifeguide

58 Talk to Me Advocate Scott Fried Refines the Lexicon of AIDS Awareness

Treatment Horizons

Hep Talk

60 The Price of Zero Harsh Drug Laws in Georgia Hamper the Fight Against AIDS

The Culture of AIDS

Lifelines

Survival Guide

cover by Annie Tritt

A&U Frontdesk

Stil at Risk

uly isn’t just another month on the AIDS awareness calendar; it’s the month we’ve all been looking forward to for the last two years: The XXth International AIDS Conference in Melbourne, Australia, convenes July 25. Kicking off the international gathering of thousands of scientists, social workers, AIDS activists, and pharmaceutical and healthcare company representatives, this year’s conference is the first to take place in a country that practically defined the proactive response to the HIV/ AIDS healthcare crisis in the late eighties. With a low infection rate for a modern, industrialized nation, Australia has always been exemplary for its forward-looking attitude regarding needle exchange policies and explicit AIDS awareness campaigns. While we were still struggling with the legacy of Jesse Helms and Ronald Reagan’s unenlightened approach to public health, Melbourne and Sydney were spearheading an honest approach to prevention. How many lives were saved? Thousands. Thank you, Australia, for leading the way in the fight against AIDS. But enough congratulations. We’ve got more work to do. Let’s use this conference as the kickoff of a new consciousness: everyone living with HIV deserves to live. The only way that’s going to happen is if everyone who’s positive has 100-percent access to antiretrovirals. The reason why I almost titled this essay, “The Fatal Shore,” is not because Australia is any deadlier than any other famous vacation destination. It’s because it’s the title of one of my favorite nonfiction books, The Fatal Shore, by the Aussie art critic and historian Robert Hughes, who died in 2012. Hughes was more than the lead art critic of Time magazine for three decades. He was also one of the first historians to recognize that the spread of HIV was aided by airline travel. Although HIV originated in a small village somewhere in Africa, it went everywhere pretty quickly because of our global connectedness. AIDS as a pandemic was, in part, a product of the space age—traveling easily from continent to continent. Ironic, isn’t it, that it took an Australian-born cultural historian to first point out that AIDS was, and continues to be, a disease that doesn’t recognize borders?

A M E R I C A’ S A I D S M A G A Z I N E issue 237 vol. 23 no. 7 July 2014 editorial offices: (518) 426-9010 fax: (518) 436-5354

As a frequent airline traveler himself, Mr. Hughes was able to see the big picture. He was one of the first to view HIV not as a scourge of just the gay community, but a disease that truly threatened all genders, sexual orientations, and socio-economic groups. He recognized it as the first truly modern plague. And yet, as humans, we have not cowered. We have learned that we can come together to fight this deadly pandemic. By taking notes at a plenary session, having coffee with a colleague, or meeting someone new from the other side of the world, we can get to zero. We can envision the big picture, too—an AIDS-free planet. As A&U’s Dann Dulin found out from interviewing this month’s cover story, Michael Urie, AIDS can only be stopped if today’s youth are at the center of prevention efforts. The young Ugly Betty cast member and star of the Off-Broadway revival of Angels in America is wise for his years: “It’s impossible for me to relate how it was back then at the beginning of the AIDS crisis.” This honest assessment of how distant the early days of dying from AIDS really do seem to those most at risk, recognizes an opportunity that we haven’t taken to heart. As Urie sees it, keeping the past present is one way the arts can reinvigorate AIDS education. PrEP is also at the forefront of prevention efforts these days, though it has been slow to take off. This month, A&U introduces a new column by Corey Saucier, who, as an HIV-positive individual, will explore all the ways that PrEP impacts life with a new (seronegative) love. And writer Michelle Zei sits down with five participants who are part of I AM Men’s Health, a PrEP support group at Philadelphia FIGHT, who share their perspectives on incorporating this tool into their lives. Check out our articles on preventing transmission via injection drug use in the country of Georgia as well as mother-to-child across Africa. We are a world still at risk. HIV depends on our connectivity, but so does our effort to get to zero.

DAVID WAGGONER

Editor in Chief & Publisher David Waggoner Managing Editor: Michael Needle Senior Editor: Dann Dulin Editors at Large: Chip Alfred, Sean Black Special Projects Editor: Lester Strong Literary Editor: Brent Calderwood Arts Editor: Alina Oswald Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, V. Anderson, Annie Buckley, Larry Buhl, Ruby Comer, Nancy Ellegate, Diane Goettel, Sally Hessney, Angela Leroux-Lindsey, Sherri Lewis, Alina Oswald, Mark Rebernik, Dale Reynolds, Elizabeth Rodgers, David Rosenberg, Corey Saucier, Mariel Selbovitz, Justin B. Terry-Smith, Patricia Nell Warren, Chuck Willman, Jeannie Wraight Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Fred Brashear, Jr., Tim Courtney, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Tom McGovern, Nancy Perry, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 Chris Companik, 1957–2012 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@ aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2014 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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A&U Mailbox

Heart Breaker I just saw The Normal Heart [on HBO] last week [cover story, “Indelible Mark,” by Dann Dulin, May 2014]. What an impressive cast and what an amazing story. Mark Ruffalo, Matt Bomer, Julia Roberts and the rest of the cast were just so good in the film. I hope the film wins some awards. In your interview, Mark makes an impressive observation, “Even then I was just baffled by the enormous amount of ignorance and cruelty that people displayed in the face of this disease. It was strange to see this as a young person, because I was so idealistic, thinking America’s this amazing place and then I see the raw underbelly of it, all the hypocrisy. It was eye-opening to say the least.” Mark, you are so right; the Reagan administration was the height of hypocrisy. —Bruno Selveggio West Sacramento, California Having lived through the beginnings of the AIDS epidemic, the movie The Normal Heart brought back many bittersweet memories for me. I saw so many of my friends becoming sick and dying. And

the sad fact is that the government and I would say some of the public did not give a damn or even care because it was only “queers” who were dying. Yes, I do not have fond memories of the 1980s. Larry Kramer should have been awarded the highest awards for what he accomplished. He is a great man. He is a real American Hero. —Mark Lowenstein Ft. Lauderdale, Florida While I applaud The Normal Heart, I can’t help but think we need more stories about the early epidemic. Yes, gay men were affected—but so were many others. I don’t want to take anything away from the movie because it did show a lot of what was happening—the denial, the stigma, the fear, and the unpopularity of activism—but let’s make more movies that show the full spectrum of who was affected. —Janie Jones White Plains, New York

The Dating Game In answer to Quinton, who wrote to

Justin B. Terry-Smith [Just*n Time, May 2014] about dating men with HIV, I would like to say that it’s still very difficult to find people who are open to dating someone who is HIV-positive. People are still afraid of “catching AIDS,” even people who should know better. I have found out the hard way over the years. I know you have to be honest and tell the truth. There is a reluctance, a holding back in many people that I dated. But hurrah! I finally found someone who accepted me with my positive status. There is still hope for the rest of us. —Tad Mulroney Lombard, Illinois I’ve learned over the years that a person who will not consider dating someone who is positive is usually misinformed about HIV and its treatment. They are often unaware that someone who is positive and has his or her viral load suppressed due to antiretrovirals has a virus that is drastically less infectious than someone who thinks he or she is negative but really in the early acute infection stage. Also, they are often unaware that we who are on treatment have often taken charge of our health, in all aspects. Some of us are probably A&U • JULY 2014

photo by Jeff Vespa / Contour by Getty Images

“In your interview, Mark Ruffalo makes an impressive observation, ‘Even then I was just baffled by the enormous amount of ignorance and cruelty that people displayed in the face of this disease. It was strange to see this as a young person, because I was so idealistic, thinking America’s this amazing place and then I see the raw underbelly of it, all the hypocrisy. It was eye-opening to say the least.’”

“healthier” than those who are negative but not paying attention to their overall wellness. I’m glad Justin B. Terry-Smith has a voice in your magazine. He represents the AIDS community well. —Jerrod McCall Baltimore, Maryland

In The Driver’s Seat Having a conversation with another human being in the front seat of a car and having it videotaped is something I wish I had come up with. Front Seat Chronicles is such a great idea and it’s so simple and basic [“Getting Real Behind the Wheel,” by Sean Black, May 2014]. To cover the whole gamut of subjects. The conversation about HIV was very important. Allen Sowelle says in part, “People get distracted by technology and social media. They become complacent. They get lulled into thinking that HIV/AIDS is ‘that crisis’ that peaked in the nineties.” Hey, this would be a great subject for a future episode of Front Seat Chronicles. —Martin Hodges Samuel Kennebunkport, Maine

Clockwise from top left: At DIFFA’s Dining By Design, Gensler + Herman Miller created XO–Celebrating 30 Years of Caring!, a space whose colors and images changed like a kaleidoscope; Gensler + Herman Miller’s take on love as seen through the Ralph Lauren home table installation; attendees were encouraged to leave their mark on the “Memory Wall.”

Editor’s note: We agree! Pitch your idea directly to the creators by logging on to: www.frontseatchronicles.com. They are always looking for new ideas.

photos by Sean Black

Moody Blues Reading [May 2014’s] Wellness Watch by Chael Needle on the subject of a study that assessed changes in mood among HIV-positive MSM made me think. I have always felt that how you feel each day affects so many aspects of your life. I agree with [researcher] Patrick Wilson that paying attention to these fluctuations—one day you’re really happy and the next day you’re really sad—can make us more attuned to the risks we take. We’ve been trained to look out for each other during the big changes in our lives—loss of a job or a lover—but what we really need to do is pay attention to the small stuff. —Roger Amesburg Keene, New Hampshire JULY 2014 • A&U

DIFFA Makes a Difference I could not agree more than with your title for the story on DIFFA—it was absolutely a “Visual Feast” for the 30th Anniversary show [Gallery, May 2014]. The designers just outdid themselves. I could not pick out a favorite, they were that good. I find it incredible that DIFFA has given out over $40 million dollars over the past thirty years. It’s a real tribute that the money goes to people living with HIV and AIDS. This is the real purpose for what DIFFA does and the non-profit does it in such a great way. All the people connected with DIFFA have my profound respect and applause. Great job by a great organization! Please keep us updated on all they do. —Priscilla Grover New York, New York Reading the May issue, I wish I could have attended the Dining By Design event. The artistic community has not forgotten those we have lost to AIDS and

those who are still impacted by HIV. I was thrilled to see Barneys New York included Bruce Weber’s “Brothers, Sisters, Sons & Daughters” series, with transgender models included in the ad campaign. We hardly see transgender people in the media and so it was refreshing to see them have their deserved “place at the table.” Barneys deserves our support! —Carla Vasquez Brooklyn, New York

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NEWSBREAK Since 1985, the AIDS Foundation of Chicago (AFC) has been providing vital services to communities across Chicagoland, growing from an ember to a steady torch of awareness. On May 16, the non-profit organization celebrated the start of its thirtieth year at its annual spring gala. Its theme— Ignite: Light Our Fight. Ignite Our Future—found its complement in the newly opened venue on the West Loop, Ignite Glass Studios, which produces glass art. The event attracted more than 270 attendees and raised $40,000 for HIV/AIDS awareness, education, and advocacy programs in the region. Attendees were treated to live glassblowing demos by Chicago’s top artists along with food, cocktails, and tunes spun by DJ Moose. “The theme of fire and creation is one that permeates throughout this entire event,” stated John Peller, interim president/CEO of the AIDS Clockwise from top left: Michael Bauer, Civic Leadership Award recipient, John Peller, inFoundation of Chicago in a press reterim president/CEO of the AIDS Foundation of Chicago, and Robert Mink, Lori Kaufman lease. “AFC has been burning strong, Volunteer Award recipient; attendees enjoyed scrumptious food and cocktails; Sen. Dick providing services in the community Durbin (D-Illinois), Peller, and Lori Kaufman Vice Chair, Fund Development at AIDS Founfor thirty years and making tremendation of Chicago; a glassblowing demo at Ignite Glass Studios dous progress in the fight against HIV/AIDS. We wanted this event to showcase our passion for the cause and help spark a new era of advocacy and service in Chicagoland.” AFC has recently stepped up efforts to link individuals to care, using social media and outreach to promote community-based testing among hard-to-reach populations. Also, AFC is helping individuals learn about and navigate the use of PrEP as a prevention tool. In these and other ways, AFC responds to the needs of its clients and the communities it serves with high-level expertise and cultural competency. At the gala, Sen. Dick Durbin presented Michael Bauer with the Civic Leadership Award for his social justice leadership and his efforts to raise awareness of how HIV/AIDS disproportionately impacts LGBT and other vulnerable communities. Another advocate, Robert Mink, was honored with the Lori Kaufman Volunteer Award for his donation of hundreds of hours of free legal assistance to AFC and other non-profits. For more information, log on to: www.aidschicago.org.

HIV Is Not a Crime Soon after the first-ever National Conference on HIV Criminalization (HIV Is Not a Crime) took place in Grinnell, Iowa, from June 2–5, which raised awareness about the lack of social justice around the criminalizing of HIV-positive individuals, the Iowa Supreme Court reversed a conviction of one of the conference’s participants.

A&U • JULY 2014

photos by Ed Negron

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Nick Rhoades had been sentenced to twenty-five years in prison and required to register as a sex offender for a one-time sexual encounter with another man in which a condom was used in June 2008. His “crime”? Not disclosing to his uninfected partner, Adam Plendl, that he was HIV-positive. Plendl contacted the police once he found out that Rhoades may have been positive, but he did not contract HIV from the encounter. Rhoades was nonetheless charged under Iowa laws and pled guilty on the advice of counsel. Rhoades received the maximum sentence and was classified as the most serious type of sex offender. Later, his prison sentence was suspended and he was placed on supervised probation for five years. He appealed with the help of Lambda Legal. The Supreme Court cited the fact that Rhoades took precautions to prevent transmission and that individuals with a reduced viral load due to treatment pose little risk of transmitting HIV. HIV criminalization laws, say advocates, are based on outdated information about HIV transmission and may perpetuate testing apathy. Across the country, thirty-nine states have HIV-specific criminal statutes on the books or have charged individuals with HIV-related crimes. The past four years have seen more than 160 prosecutions. For more information, log on to: www.lambdalegal.org.

Life, Longer The Antiretroviral Therapy Cohort Collaboration (ART-CC), a multinational cohort study of antiretroviral-naive HIV-positive patients initiating combination antiretroviral therapy, published a report recently in The Lancet that shows life expectancy has improved for this patient population. Analyzing 43,355 HIV-positive individuals across fourteen cohort studies in high-income countries, researchers found that outcomes have improved for those using combination antiretrovirals between 1996 and 2005. Researchers looked at treatment-naive individuals sixteen years and up who started combination therapy with at least three antiretrovirals and were followed up for a median duration of at least one year. These improved outcomes reflect a notable decrease in mortality rates and potential years of life lost, correspondent increases in life expectancy, and the proportion of patients surviving from ages twenty to forty-four. Life expectancy was reported as lower in those whose presumed mode of transmission was injection drug use as well as in those who started treatment at lower T-cell counts. Earlier studies were limited by smaller samples, single-nation analysis, and enrollment of patients whose possible previous exposure to antiretrovirals, a factor that may influence life expectancy, was not noted. Researchers noted that the increasing reductions in mortality and rise in life expectancy over the three time periods studied are most likely attributable to improvements in therapy during the first ten years of HAART and ongoing decreases in mortality rates among individuals on long periods of treatment. Since combination therapy has transformed the mostly fatal disease into a long-term chronic condition, the number of deaths from AIDS-defining illnesses have sharply decreased. However, those living with HIV still have a shorter life expectancy than that of the general population. In the countries studied, someone who starts combination therapy can expect to live about forty-three years when twenty, which is about twothirds as long as the general population. The report stated that the difference in life expectancy may be attributed to active HIV infection or lifestyle, socioeconomic, and health issues. Researchers call for more research in order to continually improve antiretroviral therapy to decrease the life-expectancy gap between those living with HIV and on treatment and the general population, as well as to bolster the quality of life of individuals living with HIV.

Socially Secure According to a new report compiled by the HIV/AIDS and the World of Work Branch (ILOAIDS) of the International Labour Organization titled Access to and Effects of Social Protection on Workers Living with HIV and Their Households, access to social protection equates to beneficial effects for individuals living with HIV. Analyzing Guatemala, Indonesia, Rwanda and Ukraine, which are countries that are hard-hit by HIV and in the process of developing or scaling up their social security systems, the study shows that between sixty-three and ninety-five percent of those living with HIV and had access to social protection were able to hold onto their jobs or engage in some kind of productive activity. Forty-nine to ninety-nine percent reported that their children stayed in school. Seventy-two to ninety-six percent reported access to lifesaving antiretrovirals. A well-rounded, environmental approach is needed, the report suggests—income, livelihood and employment, and health services and insurance support are needed to multiply the impact of social protection. Strengthening social protection increases the life chances as well as the quality of life for individuals living with HIV/AIDS. The report notes that access to medications is not clear-cut even when individuals have access to social protection. Navigating healthcare is made challenging by the fact that individuals are often not aware of existing programs or find the process of accessing services to be too difficult. Stigma and discrimination also still prevent workers, especially those in the informal economy (women and key populations, including sex workers, transgender people, MSM, and injection drug users) from realizing their potential, the report notes. To read the full report, log on to: www.ilo.org.

A&U • JULY 2014

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Diagnosis, Interrupted

Death came a-knockin’ and suddenly infinity became dizzy The rush of a fever, chills that stretch miles, I felt my courage draining Silenced, was the urge to run, do not betray me, body Time, a merciful mother and a cruel leader She could not save me Wrapped in her warm embrace, a seed grows, hope The community of tender eyes and lonely hearts greets me Never shall I feel shame I took off the burden like a worn coat; it can harm me no longer —Danielle Sehnert Danielle Sehnert is a seventeen-year-old high school student who aspires to major in English in college and, later, become a successful journalist. She lives in Ooltewah, Tennessee.

A&U • JULY 2014

KEVIN TRUONG

ruby illustration by Davidd Batalon; photo by Kevin Truong

hat keeps Miss Ruby on top of her game? The four divine “P’s,” that’s what—Patience plus Persistence plus Passion

equals Payoff! This is my daily mantra and it seems to be the same for photographer, Kevin Truong (rhymes with “thong”). Creator of The Gay Men Project, he travels the world to capture men in their own intimate habitat and then has them pen their own personal story. Photographing his subject’s personal possessions, like their wallet, backpack, or even their pet, further reveals their inner life. In the past two years, he’s photographed over four hundred men on four continents. I catch up with him in Puntarenas, Costa Rica, at the DoubleTree Resort by Hilton (CST approved: Certification for Sustainable Tourism), after hiring a driver from Chico’s Tours to transport my fanny from the capital, San Jose (a ninety-minute ride). The driver was Chico himself, a charming and most informative tour guide, who’s been in this business for over twenty years. Possessing a Zen-like aura, Chico’s parting words to this señora were, “Pura Vida!”—live life! Breezing through the Resort’s grand entrance in the early afternoon, I’m greeted with a chocolate chip granola cookie and then escorted to my top floor suite that overlooks three connected pools and the Gulf of Nicoya, just off the Pacific Ocean. Swaying palms, lapping turquoise waves, manicured lawns, and vibrant flowers surround me. I spy inviting deck chairs with thatched umbrellas for the protection of my fair Irish-girl skin from the tropical rays, and I sigh, This is cloud nine, kids! If you’re a health nut like me or have special needs, the chef will happily cater to your whims—and there’s a wonderful fitness center to work off all those lavish meals. Freshly blended fruit and veggie drinks are on the breakfast menu, and in JULY 2014 • A&U

the evening, the kitchen offers some unusual salad dressings like beetroot, basil, strawberry, and fennel. Don’t even get me started on the desserts—Oy! As I kick back on my cozy balcony with a tangy pineapple cocktail in hand, the sunlight sparkles on the Pacific white caps, while swimmers in the pool splish-splash below. The telephone rings. It’s Kevin. We agree to meet for dinner. Kevin was born in a Vietnamese refugee camp. He and his family moved to Portland, Oregon, when he was one year old. After receiving a degree in economics he spent five years working in youth development programs for various nonprofits. At twenty-six he joined the Peace Corps and was placed in Belize where it was illegal to be gay. Soon after, he changed careers, having graduated from Pratt Institute in Brooklyn. His dream is to eventually work in the non-profit sector “marrying my passion for social awareness and my belief in the power of art as a tool for visual communication.” Several of Kevin’s subjects in The Gay Men Project are HIV-positive and are very open about it in their testimonials. Inspired by friends who are HIV-positive, Kevin participates every spring in New York’s AIDS Walk. Since its inception two years ago, The Gay Men Project has been completely financed by Kevin, who earns money from freelance work to pay for plane tickets. Several months ago he turned to crowdfunding and raised his goal of $30,000, which will now allow him to continue with his project for six more months. He plans to travel to fifteen more countries. With the fireball sun setting, I amble over to the resort’s retro-classy Macondo restaurant, which dishes up Latin-American specialties. I pass over pedestrian bridges that arch over the

many pools of this spacious (315 rooms) resort. When I arrive at Macondo, Kevin is already seated in the intimate quarters upstairs, tucked away in a plush vivid crimson booth. Ruby Comer: What was your purpose in founding The Gay Men Project? Kevin Truong: It’s my giant love letter to gay men around the world. Really, I’m trying to celebrate our stories. I always say it started when I came out to my mom. She looked so confused, and later she told me she was trying to figure out if I was going to look different. I hope The Gay Men Project shows people that there is no stereotypical “look.” We are who we are. [Kevin lived in fear for ten years that someone would discover that he was gay.] My goal with this project is to have a true collection of stories of gay men from around the world. Awesome. When did you first learn about continued on page 68

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EMPOWERMENT through EDUCATION and ADVOCACY l Empowered consumers are healthier consumers. Empowered consumers engage in a dialogue with their providers about their health goals and treatment plans. Consumer education helps PLWH recognize high quality, stigma-free health care and empowers them to take full advantage of health care reform. Educated consumers can effectively advocate for equitable treatment throughout the health care system. Effective advocacy by educated and empowered consumers helps ensure that competent, affordable, and effective health services and treatment are more accessible.

‘‘

Pozitively Empowering I am a 53-year-old Black gay man who has been HIV-positive for the past 25 years. I am dedicated to working with and advocating for youth, so that they may not have to endure the pain and hardships I have experienced. My involvement with Pozitively Healthy allows me to work with a diverse group of individuals on a personal, meaningful, and shared cause. I treasure the opportunity to be a positive influence and to help empower all HIV consumers. My passion for helping others has led me to join a number of advocacy groups, as well as found Brothers Reaching Others, Inc. (BRO), which provides resources, educates clients, empowers individuals, develops skills, engages others, and disseminates information to disenfranchised and impoverished communities.

ʼʼ

Edward Jackson, CEO, Brothers Reaching Others, Anniston, Alabama

Pozitively Healthy National Steering Committee

Brandon Aversano George Washington University Washington, DC

David Brakebill Florida Keys HIV Community Planning Key West, FL

Matthew Lesieur VillageCare New York, NY

Stephen Bailous Metropolitan Washington Regional Ryan White Planning Council Washington, DC

Robert Caldwell The Tauri Group, Biowatch Systems Program Office Washington, DC

Andrew Hartman Lt. Joseph P. Kennedy Institute of Catholic Charities Washington, DC

Judi Billings Targetted Alliances Puyallup, WA

Andrew Espinosa Midwest AIDS Training + Education Center Chicago, IL

Angel Hernandez Orocovis, PR

Mark Fischer Values in Action Washington, DC

Edward Jackson Brothers Reaching Others, Inc. Anniston, AL

leads to ACCESS to better care and improved health.

‘‘

Pozitively Educating and Advocating My involvement with Pozitively Healthy is rooted in understanding the history of the HIV movement, and my desire to diminish the emotional and social suffering PLWH experience due to ignorance and judgment. I see stigma as one of the largest barriers to testing and treatment. We need to change the way HIV is understood in public discourse; HIV is a virus and a public health issue. My long-term vision for Pozitively Healthy is to one day look back at the victory over stigma and judgment and see an enlightened and accepting society that recognizes HIV as a medical issue as opposed to a moral one.

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Ann Stuart Thacker, Executive Director, AIDSNET, Bethlehem, PA

‘‘

Pozitively Improving Access to Better Health As a gay man born during the height of the HIV/AIDS crisis, I never would have guessed that nearly 30 years later that stigma, barriers to quality heath care, and undue suffering would still exist for so many members of my community. Heroic efforts and huge advancements in science have been made; however, we have seen little progress in addressing not only the stigma of being HIV-positive, but also the legal and emotional ramifications of intolerance and misinformation. It is because of this uphill battle for PLWH that I have chosen to advocate on behalf of myself, my friends, and my community by joining Pozitively Healthy. It is because of those men and women who fought during the early days that I’m able to now lend my voice in support for those will come after me. Bryce Romero, Consumer Marketing Assistant, Human Rights Campaign

ʼʼ

Pozitively Healthy advocates and educates so that the HIV community is and remains Pozitively Healthy

Angel Lozada Pittsburgh, PA Randal Lucero National Quality Center, Consumer Advisory Committee New Mexico Aging & Long-Term Services Department’s HIV/AIDS Advocacy Network Albuquerque, NM Oliver Martin, III National United Church of Christ HIV and AIDS Network Green Bay, WI

Eric Martinez Positive Mind & Body Support Group Net Vero Beach, FL Butch McKay Okaloosa AIDS Support and Informational Services, Inc. (OASIS), Fort Walton Beach, Florida Mark Peterson Michigan Positive Action Coalition (MI-POZ) Detroit, MI

Bryce Romero Human Rights Campaign Washington, DC

Ann Stuart Thacker AIDSNET Bethlehem, PA

David Sheon Whitecoat Strategies, LLC Washington, DC

Tim Vincent California STD/HIV Prevention Training Center Oakland, CA

John Tenorio Pueblo Community Health Center EIS Program Canton City, CO

David Waggoner A&U, America’s AIDS Magazine Albany, NY Channing Wayne Larkin Street Youth Services San Francisco, CA

Justin,

You know that you can reverse HIV with juicing? —Fruitarian Zombie Ummmmm, wow, so sorry to tell you this, but that is incorrect. If this were the case don’t you think that everyone would be cured of HIV by now? I get a lot of e-mails asking or even advising me that I can cure my HIV if I just eat right and exercise; this is false information. If this were the case I can say wholeheartedly that everyone who has HIV that wants to get rid of it would exercise and eat specific foods to get rid of it. If it were that easy everyone would do it. I think researchers have probably already explored this cockamamie option. But there are benefits—eating right and exercising can help your body bounce back from being sick, and can help make your immune system stronger; however, this does not get rid of HIV. As of right now there is no known universal cure for HIV/AIDS. There are several things an HIV-positive person has to do to live a healthy lifestyle. Keeping your doctor’s appointments: I see my doctor every three months. He requires me to take a urine test to test for miscellaneous things like my sugar levels, etc., and blood test at every visit to make sure that my viral load is undetectable and my T cells are stable.

Eating healthy is key to make sure that things like cholesterol are kept in check; some of the HIV medications may cause those levels to rise. Taking your HIV medications at around the same time every day (and not with alcohol) is also key as your body tends to adjust and gets used to you administering the medications to it. So just juicing it up is not going to get it, honey—there is so much more than that. BUT I must say I do love my strawberry banana smoothies.

Justin,,

There’s a specific reason why the highest risk group for contracting HIV has always been gay men. I’m not making that shit up—that’s fact. Look at every study. Since [HIV’s] inception gay men have always been the highest contractors of HIV. HIV is a behavioral disease—it’s not a sexually transmitted disease. IDIOTS! —JR Munoz Ohh, gurl, haven’t we said a mouthful this morning. Well, let me give your ass a little history lesson. Gay men have been present at the beginning of the HIV epidemic but it has nothing to do with “behavior.” The death of millions has more to do with mentalities toward certain groups. People and politicians started paying attention to the HIV epidemic only when heterosexuals started

getting the disease as well [through sexual transmission]. Gay men and intravenous drug users were being infected but nobody cared because they were already looked down upon. President Reagan didn’t even respond to the HIV epidemic until after thousands of Americans and other people around the world had died. Mentalities that look down upon gays is why we have had such a hard time with HIV/AIDS. HIV stigma only perpetuates fear and hate. As you stated, “Since its inception gay men have always been the highest contractors of HIV.” If a minority has constantly been looked down upon, having no rights that the majority of citizens have, made to feel like their life or lifestyle is wrong, ostracized by society, and are in some parts of the world jailed and killed for being who they are then, YES, OF COURSE THEY ARE GOING TO HAVE A HARD TIME! Studying Public Health, I’ve learned that the more a target demographic feels bad about themselves the more susceptible to disease they are, and that can go for any minority that is put down by a majority. That is also the reason why there are so many gay HIV activists who are willing to share their stories and lives with the world. Let this be a lesson to you. ◊

A&U • JULY 2014

Justin B. Terry-Smith 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. Now, with this column, Justin has found a way to give voice to the issues that people write to him about. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at jsmithco98@hotmail.com.

“AN UNFLINCHING MASTERPIECE.” —DAVID LEVERING LEWIS, Pulitzer Prize–winning biographer of W.E.B. Du Bois

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modern history that chills us to the bone even as it moves us to tears.” —MICHAEL BRONSKI, Professor of Women, Gender, and Sexuality Studies, Harvard University

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“A powerful book that displays both the malice and the nobility of our species.” —Kirkus Reviews “This marvelous book will be read by activists everwhere—and empower the future.” —BLANCHE WIESEN COOK, author of Eleanor Roosevelt

“Funny and moving, enlightening and thoughtful, inspiring and enraging, this dual biography reveals the heartbreaking losses caused by the epidemic as well as the many ways people fought back.” —JOHN D’EMILIO, Professor of Gender and Women’s Studies and History, University of Illinois at Chicago

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Brave New World one man navigates sex and love in the age of PrEP & PEP

a disaster. But we were determined to be good boyfriends, so the next week we buckled down and tried again. We got the lube ready, bought some fancy extra-thin, extra-sensitive, extra-expensive Trojans that were guaranteed to feel “Just like skin,” and it worked (kind of). We got it in quickly, finished even quicker, and high-fived each other that we had done the impossible! It was efficient, practiced, and safe. We were very proud of ourselves. Now, this is when it gets interesting. By the third time we were professionals! We had discussed pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP)—and the fact that I was undetectable and that he was a top, and that we were partnered, monogamous, and in love (because love is kind of a big deal). We began negotiating risk in a way that had not been possible just two years before! By the third time we had read articles and shared the results of research studies that found that serodiscordant couples where the bottom was HIV-positive and the top was HIV-negative were at low risk, and if the HIV-negative partner was on PrEP it reduced their risk to an even lower level than

the use of condoms could, and the most promising said that if the HIV-positive partner had fewer than 200 copies of the virus in his system, the risk was reduced to a nearly zero-percent probability of transmission. We were living in a brave new world! And that night we had sex without a condom, and it was perfect and amazing! It was musical and rhythmic and intimate, and the air in the room was alive with our laughter and our moaning and the friction of our skin. And it was beautiful. We fell asleep in each other’s arms dreaming of a wonderful future together. But in the morning he was afraid. In the morning he asked me if he had been exposed. And even though the new science says that he is safe, and that what we did is less risky than using condoms, I still felt guilty and ashamed for not using one, so I told him to go see his doctor. He’s been on PEP for three weeks now, and we haven’t had sex since. Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Non-sense can be found at www.justwords.tumblr.com. A&U • JULY 2014

illustration by Timothy J. Haines

y boyfriend likes to give, and I like to receive, so it’s kind of perfect—if perfect is something two people can be. We’re the classic top-and-bottom relationship, and it’s kind of amazing. We’ve been dating for three months and things are going really well. We laugh at each other’s silly jokes; we stay up late watching Scandal on Netflix in our underwear; and we have deep, winding conversations about life, religion, and love while eating pizza and French fries. It’s the kind of relationship I have always hoped for... But though we seem compatible in more ways than most, we have had sex only three times. Three times in three months! For me, that is a problem! Sex is kind of a big deal. Now, normally, I would have a long exhausting conversation about how “I need to be emotionally validated by sexual intimacy,” and how “I expect our physical relationship to involve more than just kissing and handholding in the park,” but the situation is a little different this time because I’m HIV-positive and he is HIV-negative. We are serodiscordant. Having different viral statuses makes sexual interaction a little more complicated—but it’s 2014 and we are both adults, so we know the drill: Condoms are the answer (at least that’s what they tell us). Now, to be honest, I’m thirty-seven years old and I’ve been HIV-positive since I was twenty-one. And because I usually only date other positive guys, it’s been at least ten years since I’ve had to use a condom. He’s fifty-one and only puts his penis in people who he says “I love you” to, which greatly reduces his number of sexual partners, so he hasn’t had to use a condom in just as many years. So needless to say, our first attempt was a royal flop! We fumbled with the little rubber instruments like we were monkeys doing math problems! It was frustrating and sad. The condoms kept slipping off, neither of us could maintain an erection, and we spilled lube everywhere! It was

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ESSAY

Living on “The Drive” 1986–2009

by Francisco Ibáñez-Carrasco

iving in Canada, being Canadian, for me, is being HIV-positive. I don’t know any other way of life. I was twenty-two when I came and got infected. If you took HIV away from me, I would be an immigrant again or homeless, or worse, hopeless. My Canadian-ness is in my infected relationship to the persons of Canada as much as to its forests and mountains and glaciers and prairies. No Canadian place or peoples has shaped me more than Commercial Drive in Vancouver. Space molds us: our closets make us square, bathhouse cubicles alienate us, and housing co-ops make us dramatic à la [the British soap opera] Coronation Street. Mood and shape and design are related to geographical location. In the East, men are thickset, rough, cocky, and friendly, used to swaggering in harsh winters. On the West Coast, they are diffident and prissy, used to a lot of personal space and tempered weather. Commercial Drive, The Drive, is where I lived for twenty-four years, where I did important growing up. Fancy people come slumming there on Saturday mornings; they come from everywhere in the Lower Mainland, following their noses up in the air, their yelping designer dogs and strollers (new millennium children are all being rendered disabled, not allowed to walk until they are nearly ten years old), straddling their Hummers and Harleys. The aging punks in clunky skateboards and the cute young Sinéad O’Connors fade into the background of the pixilated folk. The rest of the week, The Drive is intimate, vibrant, and a bit skuzzy even in the face of imminent gentrification. Commercial Drive is a corridor between Hastings Street and Broadway Avenue, a lesser vanity fair, a borderland between dull suburbs and a self-important high-heeled downtown with buildings named after New York erections, and

far from the West Side. Here, they sew Lululemon in local maquiladoras; in the precious Kitsilano neighborhood to the west of Main Street, they vomit to wear it. Main Street is a sort of mindset borderline between the west side of Vancouver, one of the most livable cities in the world, as it is advertised, and the east side, soggy, dreary, suburban. The mythical poverty and drudgery of the Vancouver Downtown East Side lives there, the evidence that a third world can fit uncomfortably inside a first world. You need an identity to live on The Drive but you don’t need an ID. What’s not to like? Where else can you smoke a doobie at the top of the street, hop on your skateboard, your scooter, or your own two feet, throw worries into the air

salsa, and local jazz jams. It is a blended smoothie of wheatgrass, butch desire, a trace of secondhand clothes stores, earnest global politics, and tree-hugging. There is always an indignant little demo for someone to be liberated in a faraway prison or to take back the night. The Drive acts locally and projects globally. The Drive is a stone’s throw from Strathcona, that patch of Chinese houses saved from the bulldozer that was to pave a highway through it in the late 1960s. It is midway to the suburbs and close to the airport (in case you are being deported). Forget downtown Granville, reeking of testosterone; Robson Street trying to be Rodeo Drive North; and the different planet where North Vancouverites live— The Drive is where it’s at. From there, you can check out the world. To be on The Drive, you’ve got to be a bit insolent, quirky, mind-your-business. This surely includes the kind of vehicle you drive, the drugs you use, how green

“The Drive is intimate, vibrant, and a bit skuzzy even in the face of imminent gentrification. Commercial Drive is a corridor between Hastings Street and Broadway Avenue, a lesser vanity fair, a borderland between dull suburbs and a self-important high-heeled downtown with buildings named after New York erections.”

and whiz through the busiest corner of the city at Broadway, past the decrepit cinemas, the stalls with green produce, the smell of weed, queer femmes with rough edges and tramp stamps, men who look like their dogs, a refugee camp of second-hand fashions, the cornucopia of 1970s lesbian purple outfits, tamales, shawarmas, and dubious sushi? I’ve experienced nothing like The Drive and, trust me I’m always sniffing around Canada. Kensington Market, Church and Wellesley, and the Ossington Village in Toronto; the Plateau and the Mile End in Montreal; the Osborne Village in Winnipeg; or the Gottingen North End area in Halifax exude a whiff, have an air, but they do not have the aplomb and stamina of The Drive. The Drive is not a one-theme park. Queers have not made it boutique like the Castro in San Francisco or Chelsea in New York. When I think of traveling The Drive, plugged into my iPod, I hear the ’80s Vancouver rock band Bob’s Your Uncle, cheesy rap,

you are, and who or what you choose to fuck. Historically, The Drive has been populated by immigrants, the working class, and lesbians. It isn’t dainty. It is a mix of cheaply made co-ops, [post-War Canadian tract houses known as] Vancouver Specials, and Vancouver boxes from the century of the dodo. In 1985 when I arrived there, Vancouver wasn’t the aspiring world-class city they say it is today, more like a young hooker from the province trying to walk in big-city high heels; Vancouver was a sleepier town with many queer bars. I rejected the dense gay atmosphere of the West End where gay men had traditionally lived since the 1970s. Maybe it was fear of HIV, and longing to escape my fate, which I did in many ways. I hopped on the primordial 420 Victoria line, one of those swaying trolley buses worming its way up Hastings, going east to finally turn south into a drab street. This was the first time I saw The Drive and my urbanite nubile big bustling Santiago A&U • JULY 2014

city wetback as immigrants You can see these East Side lezzies “I had arrived from a immigrant little often do, lesbians with their politics tattooed on their skin, Latino culture that, even heart took a laughing raucously at local cafes after drifted East by dive— another touring the world with a circus (like my necessity, not today, is machista and clear-cut on beloved Erika Espinosa did) or buildchoice, once this forsaken ing a house on an island (like Jen and misogynist, where gay men Kitsilano and rainforest, I Suzanne and Oline did). Lezzies raising other alternative of my generation still look thought. If it hell in housing co-op meetings, zipping neighborhoods was hard to find became gentrified down the road in station wagons packed at lesbians with reticence. myself comby the late 1970s. with children and dogs and softball Paradoxically, Latino socifortable among equipment and groceries, holding hands In the book the Anglo gay tightly while swaggering through a Queers in Space eties are tough matriarchies men in the (1997), Anne-Ma- pack of goofy soccer players idling on a where mothers are ambiguWest End who sidewalk. Handsome women choosing a rie Bouthielle were silenced tells us that North whatnot at the local lesbian erotica store, ously feral to their offspring: by AIDS in the Womyn’s Ware, donning Mohawks, American fags they erect themselves as 1980s, it would used to gather tra- carrying children of all colors on their probably be backs, or sensually licking their fingers ditionally around victors and victims.” impossible to made sticky by the delicious pullout ribs consumption, find a queer on sexual opportuni- from a local eatery. this cluttered Lesbians remind me not to be a ty, and entertainDrive, I mused. Wrong! Dykes were ment, while lesbians used to gather around sissy about the important shit, to open there. Once I saw the first dyke mullet labor, reconstructed families, and inexpen- my mouth big—not only to suck but and fleece hoodie combo swaggering to speak—to do what needs to be done sive housing. down the sidewalk, the women adjusting without violence. Any part of me that In the 1980s, when I went to live in themselves, I never looked back. may be butch, I owe to lesbians on The The Drive, the butch lesbian was queen The next twenty years I would walk, Drive. Lesbians made me vocal, whereas of The Drive. It is surely changing now crawl, limp, and run on those sidewalks, men had made me oral, submissive, and that new generations might not need a happy, fit to die in the 1990s, high out silent; lesbians forged me into a queen geographic ghetto to be protected. I had of my mind on “BC bud,” or brokenof social justice process, and not letting arrived from a Latino culture that, even hearted by bad dates with Anglo gay my dick lead the way all the time. I today, is machista and misogynist, where men who invariably thought I was too learned from them about friendship, loygay men of my generation still look at intense and too foreign, alty, and family at times that were that the East Side was difficult for gay men. Inoculated too far and too foreign. with dread and disgrace, subject “Lesbians and straight women still are I walked The Drive in to apartheid by my HIV serostaplainclothes, and in the dutiful caregivers of gay men. I see tus, I could not be family to gay drag at the legendary men. I was nearly left an orphan them among the researchers, students, Harry’s on Charles to AIDS. Before I met the wonStreet at Commercial and frontline nonprofit workers, and I sigh derful John with whom I built a Drive, the only gay coffamily, it was dykes on The Drive in relief. Women often bring compassion fee shop to exist outside that gave me hope. They were my the West End, thanks to mixed with a pragmatic look at the work role models for gender fucking the sourly committed and progressive families. that needs to be done and often a politibut committed Harry Lesbians and straight women Grumsky. I strutted cal and critical eye on life.” still are the dutiful caregivers of my stuff in leather or gay men. I see them among the stumbled along wearing researchers, students, and frontDepends when I was line nonprofit workers, and I sigh very sick and incontilesbians with reticence. Paradoxically, in relief. Women often bring compasnent, but I was always content to live Latino societies are tough matriarchies sion mixed with a pragmatic look at the there. In my experience, there was where mothers are ambiguously feral work that needs to be done and often a tolerance, diversity, and less of the gay to their offspring: they erect themselves political and critical eye on life. Dykes, bashing, internalized homophobia, and in particular, will always make me AIDS phobia so easily found in the West as victors and victims. In any case, the presence of dykes in my new Canadian remember Vancouver. I grew up queer End of Vancouver. One lesson I learned: ’hood was one of the most interesting thanks to the dykes on The Drive. It was good to stay at a distance from my ten-percent-gay-men contemporaries discoveries for me as a young queer Francisco Ibáñez-Carrasco is an AIDS activist, settler. They became central to my life, when I was an HIV-positive minority social scientist, educator, and writer. His and like what happened in many other within that ten-percent minority. memoir Giving It Raw: Nearly 30 Years with places in North America, dykes and Lesbians fit The Drive like a pair of AIDS will be published in September 2014 straight women were my nurses and Birkenstocks. I went looking for a father by Transgress Press. Ibáñez-Carrasco lives in allies during the worst of AIDS. figure and I found many. Historically, Toronto, Ontario, with his fat cat Orion. JULY 2014 • A&U

COMPLERA is a prescription medicine used as a complete HIV-1 treatment in 1 pill a day. It 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. 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 does not cure HIV-1 or AIDS.

Just the

one

for me

COMPLERA is a complete HIV-1 treatment in only 1 pill a day. Ask your healthcare provider if COMPLERA may be the one for you.

Pill shown is not actual size.

What is COMPLERA?

COMPLERA (emtricitabine 200 mg, rilpivirine 25 mg, tenofovir disoproxil fumarate 300 mg) 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 combines 3 medicines into 1 pill to be taken once a day with food. COMPLERA is a complete single tablet regimen and should not be used with other HIV-1 medicines. It is not known if COMPLERA is safe and effective in children under the age of 18 years. 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.

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: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol), oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek), rifabutin (Mycobutin), rifampin (Rifater, Rifamate, Rimactane, Rifadin), rifapentine (Priftin), dexlansoprazole (Dexilant), esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), omeprazole (Prilosec), 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, or the medicine adefovir (Hepsera).

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 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.

What are the other possible side effects of COMPLERA?

Serious side effects of COMPLERA may also include: • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood tests to check your kidneys before

Learn more at www.COMPLERA.com

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 regimen and should not be used with other HIV-1 medicines. HIV-1 is the virus that causes AIDS. When used properly, COMPLERA may reduce the amount of HIV-1 virus in your blood and increase the amount of CD4 T-cells, which 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. • 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: rifabutin (Mycobutin); 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 tenofovir (ATRIPLA, STRIBILD, TRUVADA, VIREAD) • Other medicines that contain emtricitabine or lamivudine (ATRIPLA, Combivir, EMTRIVA, Epivir, Epzicom, STRIBILD, Trizivir, TRUVADA) • rilpivirine (Edurant) 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?” • 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 healthcare provider 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 nonprescription 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: – 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. How should I take COMPLERA? • Stay under the care of your healthcare provider during treatment with COMPLERA. • Take COMPLERA exactly as your healthcare provider tells you to take it. • Always take COMPLERA with food. Taking COMPLERA with food is important to help get the right amount of medicine in your body. A protein drink is not a substitute for food. If your healthcare provider decides to stop COMPLERA and you are switched to new medicines to treat HIV-1 that includes rilpivirine tablets, the rilpivirine tablets should be taken only with a meal. 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. Issued: December 2013

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. ©2014 Gilead Sciences, Inc. All rights reserved. CPAC0098 02/14

Ephemera as Evidence A new Visual AIDS show explores the legacy of AIDS by Alina Oswald

n recent history, the AIDS pandemic has prominently highlighted our…limitations, as humans, when facing the disease, bringing home the realization of our mortality and the loss associated with it. Maybe most importantly, when it comes to HIV/AIDS, this loss takes on new dimensions, becoming a collective loss, one that, if allowed, threatens to leave a permanent void in our past, and, hence, in our present and future. So the question that we may want to ask ourselves should not regard the passing of time, but the way in which we capture some of the ephemeral, yet important moments of our time to leave them as legacy for generations to come, so that they, too, can learn from the past, in order to better understand their present and build their future. As it often happens, art becomes a tool that facilitates this kind of experience, and with it, that the legacy of AIDS will continue. Hence, Ephemera as Evidence, a Visual AIDS show that ran at La MaMa La Galleria in New York City during the month of June, and hopefully will travel in the following months. Inspired by a 1996 essay written by performance-studies academic José Esteban Muñoz (1967–2013), the show talks about the legacy of AIDS through three different art forms—visual arts, performances, and pedagogical works—offering a collective body of work capturing the cultural, social, and sometimes political life of HIV/AIDS. “Ephemera is about challenging the idea of evidence,” says Joshua Lubin-Levy, who co-curated the show together with Ricardo Montez. “The binary between living and dead is so firm, [hence] Ephemera is a way to activate a connection between those spaces, [allowing] us to grasp all the stories within the realm of existence.”

Both mentored by José Muñoz, who passed away in November, the curators thought to bring his work, which was central to the early nineties, to the registry of Visual AIDS. As Ricardo Montez and Joshua Lubin-Levy are both in academia, the show started as a student project, an interactive and often intergenerational project that invited students from The New School, where Montez works, to go to the Visual AIDS registry and find an artist whom they wanted to work with, and develop a semester-long project with that artist. “We are profoundly grateful that the artists have been willing to engage with us,” Lubin-Levy says, “[and we tried] to meet them on their own terms.” For the show, they created art in response to the relationship between the ephemeral and the legacy of AIDS. Benjamin Frederickson’s piece is representative of that, attesting that ephemera are constantly accumulating. A Minnesota native, Frederickson studied photography at the Minneapolis College of Art and Design, graduating in 2003. In 2010 he came to New York City for a visit, and decided to stay. For Ephemera, he wanted to do something interactive, so he put together his makeshift pop-up studio within the gallery space, taking appointments and shooting at the gallery, during opening hours. At the end of each day, he posts his favorite images outside his studio. After the closing of the show, he plans on publishing these images in a small publication. His photographic process sets him apart nowadays, because Frederickson, a very young photographer, shoots film. “Since I’m shooting analog, the process is slowed down,” he explains. “But that’s how I’ve been trained. You get your great photographs, but you also have your mistakes, [which, on film,] are permanent. I like the

idea of having everything, the bad and the good. It’s about the process for me.” He uses his images to share his HIV story. He believes that talking about HIV/ AIDS helps eliminate related stigma, and makes people understand AIDS today— A&U • JULY 2014

Chloe Dzubilo, Untitled, n.d., feather, photo, paper, 8 by 10 inches. Courtesy the Estate of Chloe Dzubilo

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A&U Gallery

Kia Labeija, In My Room , 2014, digital print, 16 by 24 inches. Courtesy of the artist

Nancer LeMoins, Tilda, 2014, silkscreen and acrylic on shoe (size 8). Courtesy of the artist

what it means to be undetectable or that testing positive doesn’t make anybody a bad person. “I’m very open about my status now,” he confesses. “I just want to share my story so that maybe it will help [others] become comfortable with their status. [My testing positive] gave me the kick in the pants to come to New York and follow my dream. [It] really opened my eyes.” Being part of the Ephemera as Evidence group show has been a unique experience for Frederickson. “Some of the artists are no longer around,” he mentions, “but there are also artists who’re still creating. It’s a nice balance.”

Eric Rhein [A&U, December 2005] adds to that balance by sharing a few art pieces from his personal archive, his AIDS memorial, Leaves, which honors people the artist knew, and who died from complication to AIDS. Started in 1996 as a response to the artist’s own Lazarus transformation, Leaves—leaves the artist collected and rendered in wire, creating the portraits of those who passed away—documents “a collective tragedy,” and the artist’s role in documenting it. Today it includes more than two hundred names, artists like Hugh Steers [A&U, September 1996] and Chloe Dzubilo, whose works are also part of the show.

Diagnosed in 1987, Rhein gets to experience what he calls “the aftermath of survival,” a time when HIV status is not binary anymore. “It’s a wonderful thing that some people became undetectable,” Rhein comments. “But undetectable is not a cure, [rather related to] the wear and tear, the war wounds and the toll on one’s physical and emotional, and also economic status due to living in a country that doesn’t have socialized medicine.” A founding member of the Visual AIDS artist registry, Rhein explains that Visual AIDS archives were started in order to consolidate and preserve the work of artists A&U • JULY 2014

A&U Gallery living with HIV/AIDS, at a time when so much of art was being lost when artists died. The archives were set up to be inclusive, and Visual AIDS, as an organization, has maintained the archives, nurturing this inclusiveness regardless of age, cultural, social or class structures, to this day. Nancer LeMoins [A&U, August 2012] takes the idea of social and class structures, and also gender, a step further, exploring the concept of loss and longing as seen through the prism of HIV, but also of related poverty, joblessness, and aging, especially related to women. LeMoins uses discarded shoes and uses their leather soles to create art. For her, shoes represent a perfect metaphor, because women, as well as men, and poor people in general, are stepped on by society. Also old shoes, having been worn for a long time, have a personal imprint that in turn translates into an intimate work of art. “I think we’ve really gotten away from realizing the importance of older people, especially older women, in our culture,” LeMoins says. “People [especially older women] are getting walked on. They are out there, and nobody notices them. [That’s why] I’m trying to nudge people a little bit,” she adds, “to say ‘this is what’s really happening.’ I’m trying to create a cultural shift through art.” Another kind of shift, one concerning AIDS stereotypes, comes through the work of Kia Labeija, a young artist who deals

with the AIDS legacy in a very different way. A member of the House of LaBeija for almost three years, Kia Labeija is a multidisciplinary artist interested in photographing people. Lately she started doing self-portraits, she says, “because I spend so much time photographing people, and I don’t have any pictures Benjamin Frederickson, Daniel, 2014, instant color print, 3 1/4 by 4 1/4 inches

of [myself ]. So I started using myself as a subject.” Her images are a representation of an under-represented population living with HIV, a population characterized by three words not usually associated with HIV/AIDS—young, beautiful, female. The artist brings that up, because she believes that continuing to think of AIDS in the same old way is only fueling the stigma. Her self-portraits displayed in the show captivate the viewer by their… realness, and also by the intimacy and the artist’s own emotional state they evoke. Being born with HIV, her experience of living with the virus is quite unique. The sense of loss comes through not only from losing her Eric Rhein, Legendary Mark (Mark Morrisroe), 1996, wire and paper, 14 by 11 inches. Courtesy of the artist

health at a young age, but also her mother, to the disease. But in her artwork, she doesn’t want to portray this loss in a sad or depressing way, rather in a fantastically beautiful way, as if under another identity. Hence, the creation of powerful pieces, like In My Room, and Mourning Sickness. Kia and Mommy is a self-portrait of the artist holding a picture of her mother in her hands. “I heard somewhere that the healing process begins as soon as it bears witness,” she says. “So, for me, to tell my story through my images and have people witness it, really helped me—ten years after my mom has passed, twenty-four years after I’ve been dealing with this—to really get to love myself, heal, and gain a new kind of happiness, self-love, and fulfillment.” Ephemera as Evidence has brought many artists in touch with their survival. As Rhein puts it, the show “affirms that we are in this together, with a collective history, [present] moment, and future beyond generational, social, and class structures.” Visit Nancer LeMoins at: www.visualaids.org/ artists/detail/nancer-lemoins; Benjamin Fredrickson at: www.benjaminfredrickson.com; Kia Labeija http://goodnight-trafficcity.com. Visit www.ericrhein.com for more about Eric Rhein. For more about Ephemera as Evidence, check out: www.visualaids.org/events/detail/ephemera-as-evidence-visual-aids-exhibition. Alina Oswald is Arts Editor of A&U.

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I AM Men’ Philadelphia FIGHT Rethinks HIV Prevention, Shifting from DON’Ts to DOs with PrEP by Michelle Zei photographed exclusively for A&U by Freedom G Photography

on’t—the conversation around sex and HIV is full of these phrases: Don’t have sex, don’t have unprotected sex, etc. The negative connotation around HIV and sex can often make those who are sexually active and at high risk of contracting HIV feel ashamed. Silenced questions lead to less education and more risky sexual behavior. Since its introduction to the public in 2012, the HIV preventive drug taken as pre-exposure prophylaxis, or PrEP, has shifted the conversation about HIV in a more sex-positive direction that encourages people: do live a healthy lifestyle, do examine your behavior, do embrace sexuality—and do take advantage of a new method of prevention to protect yourself and those you’re involved with. PrEP is an HIV prevention system where people who are HIV-negative take the pill Truvada along with medical supervision and health monitoring. PrEP’s effectiveness increases with strict adherence. According to the iPrEX study, when MSM participants took Truvada consistently, their risk of infection was lowered by at least ninety-two percent. Another iPrEX study indicated that taking Truvada daily paired with condom use reduced risk by ninety-nine percent for MSM. Philadelphia FIGHT’s I AM Men’s Health initiative has a special PrEP support group that’s been administering PrEP since January 2013. HIV prevention is especially needed in Philadelphia where HIV rates are five times the national average. The program at FIGHT administers Truvada along with holistic health services and sex education. Staff members keep tabs on participants so they adhere to their medication and receive PrEP’s full benefits. I AM Men’s Health’s PrEP program is a model for effective outreach and distribution of the pill. The Youth Health Empowerment Project and PrEP group

Steph Hunt offer holistic healthcare services to young, gay minority men under twenty-five in Philadelphia. Rather than just learning about HIV prevention, participants are exposed to nutrition and mental health counseling, and a variety of activities that invite participants to consider their overall well-being. The PrEP program’s medical director Helen Koenig, MD, broke down how PrEP works: “PrEP is a pill that someone without HIV can take to protect themselves from getting HIV. If someone taking PrEP on a daily basis comes into contact, either sexually or through

exchange of needles, with someone who has HIV, PrEP can halt the ability of HIV to make copies of itself in the cells of the HIV-negative person’s body. This happens because the PrEP medicine, Truvada, blocks the activity of the protein that HIV uses to make copies of itself. Therefore, even though HIV-negative people can still become exposed to HIV, the HIV infection itself is aborted at a very early stage.” I sat down with with Oberon Wackwitz, Malcolm Dettiford, Luis Torres, Miles Hunt, and Stephen Handlon from Philadelphia FIGHT’s PrEP support group to A&U • JULY 2014

’s Health talk about PrEP and how it’s influenced the way they view HIV. Michelle Zei: How did you first find out about PrEP and what was your reaction?

hen Handlon, Malcolm Dettiford, and Miles t of I AM Men’s Health

Oberon: I already knew that pre-exposure prophylaxis existed but I didn’t know they were giving [it] out to people in at-risk situations other than people who are in current relationships with people with HIV. So I was here with my gay brother, if you will, and he was already in the program and I asked what he was taking and I started asking more questions about how it works and it seemed very promising to me so I signed up and started off without any initial side-effects. I did stop at first but, when I started back up again, I had a few [though] after a week they were gone. JULY 2014 • A&U

It was pretty cool to get involved. Malcolm: I heard about it through a friend. I found out about it about a year ago and I’ve been taking it ever since then. The effects I experienced weren’t too rough but it’s just fine. Now I know I can have sex with random men with protection, and my risk is lower. Luis: When I first heard about PrEP I was interested in it. I didn’t really know what was going on so I just kept coming every Monday to see how it works and what the benefits are of taking it. I just feel like it’s a great thing to offer to people with a higher chance of contracting HIV because they have risky sex sometimes. Miles: Caitlin told me about the program. At first, I was like I’m not doing it, it’s too much paperwork. But the more she explained it, she told me it would lower the risk and it’s free so I took it home and read it. I came back the next week and signed up for it. Caitlin said PrEP lowered the risk by ninety percent so I said, okay, if I’m going to have sex with males that may or may not have HIV, I should take it. At first it made me sick; then I thought about it in the long run, and it gives me a better outlook on life and lowers my risk. It lets me know I can still live my life taking it and I can talk to people who are HIV-positive. I have a sense of happiness that other people are taking it and I’m not the only one. The support group lets me ask people if they’re going through the same thing.

with people as you normally would. To an extent some of this true, but my view was very unrealistic and it was a really scary thing for me. Malcolm: Someone in my family has it so I was like, oh my god I’m going to get it. When I was younger it scared me, but now it doesn’t scare me as much. Even though I wasn’t sexually active I was scared I could contract it because I didn’t know anything about it. Then, I turned nineteen and learned stuff about it. I felt like I was bound to get it because I’m a gay male and everyone is always saying that I’m going to get it. Miles: I was scared, I thought if I caught it I would die instantly. I heard about it but it didn’t really affect my life.

“I can take my sex life back into my own hands so I don’t have to feel afraid if I’m in a situation that’s considered risky, even if it’s with a condom.”

How did you grow up viewing HIV? Oberon: When I was younger and I didn’t know about PrEP, I thought HIV was the end of the world. You would take medication and your sex life was gone. There was this incredible social stigma, you wouldn’t be able to connect

When I moved to Philly I knew I had to be careful because there’s a [large] population of people with it. Stephen: In tenth grade, I watched the Philadelphia movie. It was kind of weird because there weren’t any out gay people in my school so that was like the only depiction of gay people, which in a sense was misleading. I got more educated when I was in college through classes and my own research. Even when you get tested, it’s like, okay, good, you’re negative, but they don’t talk to you enough about lowering your risk. Has PrEP changed the way you view HIV? Oberon: I can take my sex life back into my own hands so I don’t have to feel afraid if I’m in a situation that’s considered risky, even if it’s with a condom. It’s also opened my eyes toward research around HIV. It’s amazing that since the HIV/AIDS epidemic we’ve gotten as far as we have. It’s very important because a lot of people within the gay community are not using

Antonio B oo AM Men’s ne, tester/counselor Health at I

condoms, period. This gives us [as PrEP users] the upper hand because regardless of how we view unprotected sex morally, the fact is that [some people are having unprotected sex], whether we say it’s wrong or right. We should be proactive and that’s what PrEP does. This at least keeps people from contracting one disease that’s very life-altering and incurable. On a larger scale, if everyone was taking this drug, HIV rates would go down significantly in our community. Luis: Since I started taking it, [and] of course I’m worried about [HIV infection], but I feel my chance is really small. Since I’m on this medication I feel like I might not be able to get HIV but I still should worry about other things as well. Stephen: Using it has changed how I think about HIV because I feel like in public health there’s almost too much focus on things after they happen; there isn’t as much focus on prevention. I guess it’s partly just human nature to think of something after the fact, but I think if it’s more widely available it would be better economically as well than to treat people with HIV individually. If you don’t use condoms consistently and correctly, it’s basically like not using them at all. Being here, a lot of teens aren’t using them consistently and correctly. It’s really hard or people just aren’t doing that. It’s better to acknowledge that and deal with it. What are some misconceptions or concerns that people have about PrEP? Oberon: I will say that honestly that Truvada alone, without any support or programming like this, [may significantly impact people’s views about the importance of other prevention tools]. It makes people more comfortable with having [condomless] sex because they’re thinking, ‘I can’t get HIV.’ But they fail to recognize that they can get other diseases. The beauty of a program like

this is that it’s a guide through that process—yes, we’re going to get the drug but also other means of prevention for other STDs. We learn about other diseases and get tested for them which reminds you that Truvada can keep HIV at bay but there are other diseases—this is the reality. Sex can get messy and you need to take care of yourself. PrEP is more than just a pill; it’s a whole system. It’s very odd that people have this adversity to taking the medicine. A lot of people don’t like the idea of taking it. I was talking to some people today and they were very iffy about it; they were questioning it heavily almost like it’s poison. One person was saying it’s an excuse to not wear condoms. People aren’t wearing condoms anyway—that’s the point; that’s why PrEP prevents [at least] HIV [among those who go condomless]. It’s crazy that people have this view of it. Why is this a thing, especially amongst poor, minority people that are at higher risk? They have this aversion to medical treatments that could be potential lifesavers. I don’t understand why it’s like that; I think it’s something that seriously needs to be looked at. It’s a big issue because how can you lower the overall rates in Philly amongst higher risk populations if they’re afraid of it? Luis: When I bring it up to my friends, a lot of my straight friends, they ask if it’s been tested. Like, it’s FDA-approved—of course they had to test it on people. I feel like people judge because they’re oblivious to the drug but I think people should know more about it. Doctors should tell people and if doctors don’t know they should be informed as well. I try to give PrEP a good name because it benefits you in the long run. I feel like it would be good for everyone. The dediA&U • JULY 2014

cated staff at I AM Men’s Health have seen firsthand where other HIV prevention tactics fail or fall short. In particular Noel Ramirez, LCSW, MPH, program coordinator at I AM Men’s Health, noted the danger of relying solely on condoms for HIV protection. “With gay and bisexual men, there’s a large context of shame that informs their identity formation. PrEP really helps dismantle that. We’re often hard-pressed to push the condom conversation that silences the conversation that might make us uncomfortable. This forces us to get to the core and stigma around gay sex. That kind of stuff isn’t addressed when you give a kid a condom and say ‘Have safe sex, always safe sex!’ Clearly there’s a disconnect because our incident rates, particularly with this population, continue to rise every year,” Ramirez said. Despite PrEP’s accessibility (it’s covered by all insurances including Medicaid and Medicare and available directly from Gilead Sciences, Inc., with a prescription), there are still obstacles inhibiting people from using PrEP. “Folks who would benefit most from PrEP—we know the highest group for acquiring HIV is young MSM of color— are the least likely to be in medical care at all. These are folks least likely to have primary care and primary care providers have the least experience working with them. We know that clinicians and physicians are notoriously bad at accessing who is at risk. As far as I’m concerned,

anyone who is sexually active is at-risk. It may not be a sentiment shared by many providers unless you’re using drugs or have many sexual partners, but other people are also at-risk,” Dr. Koenig said. PrEP also empowers people to take more control of their sex lives and remove some of the Noel Ramirez, program coordinator stress that accompanies at I AM Men’s Health sex, according to Caitlin Conyngham, the administrative manager at the Youth Health Empowerment Project. “We really believe everyone should have the choice to access prevention strategy. The guidelines PrEP the same way you talk to people advise clinicians how to determine who about their risk of pregnancy about birth is considered at risk for contracting HIV control. We know that PrEP works nine and could potentially benefit from PrEP. times out of ten to prevent HIV if you MSM and people in relationships with take it at the same time everyday. That HIV-positive partners are not the only can be a game changer groups considered at risk, a reminder in how you want to have to the public that HIV is not an issue sex. I tell people you confined to a specific community but shouldn’t be terrified also includes heterosexuals that have unevery time you have sex. protected sex with partners of unknown This allows you to take HIV status. These guidelines begin to that fear off the table a recognize the changing reality of what it little bit. It puts it in a means to be “at risk” and invite broader different context because discussion and participation surroundyou’re not making the ing HIV prevention. decision when you feel emotional or aroused. For more information on PrEP, check out the CDC’s recently updated guidelines by logging on You’re making the deto: www.cdc.gov/hiv/prevention/research/prep/. cision over breakfast or dinner and we all make For more information about Freedom G Photograbetter decisions when phy, log on to: www.freedomGphotography.com. we don’t have all the other mess on the table,” Michelle Zei is a freelance multimedia Conyngham said. journalist. As a journalism student at Temple In May 2014 the University, she developed a passion for CDC published clinical grassroots organizing and community media. practice guidelines for Caitlin Conyngham (left), administrative manager Her interests include HIV/AIDS, the PalestinPrEP, helping more at the Youth Health Empowerment Project, and ian-Israeli conflict, millennial activism, and clinical practitioners immigration. She believes in the power of the Dr. Helen Koenig, who acts as medical director of pen and the Web to educate and unify comI AM Men’s Health understand PrEP as a munities. Follow her on Twitter @michellezei. highly effective HIV

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Necessity:

Mother of Prevention Born Free Africa Counts Down to Zero Mother-to-Child Transmission by Stevie St. John

t its heart, it’s a simple problem with an elegantly simple solution. An HIV-positive pregnant woman with access to care and medication can greatly diminish the chance that she will pass HIV on to her child during pregnancy, during childbirth or while breastfeeding. All she has to do is take one pill a day. For that to happen, though, several pieces must fall into place. First, the expectant woman must have access to medical care, including HIV testing. Only if she knows that she is HIV-positive can she get the care she needs. Her healthcare providers must be trained in providing HIV testing and offering care for those who are positive. They must have access to testing equipment and, of course, to the antiretroviral meds themselves. Without treatment, the risk of motherto-child (or perinatal) transmission is some thirty-five to forty-five percent—compared to just less than one percent for those who get the needed care. And those children who are born HIV-positive face a fifty-percent chance of death before the age of two if they do not receive treatment. Just one pill a day, taken by the expectant mother, would prevent the vast

Born Free Africa is a private sector-led initiative that partners with governments, donors, and nonprofits to provide funding, training and policy analysis in order to eliminate mother-to-child HIV transmissions in some of the most affected African countries such as Kenya, Uganda, South Africa, and Nigeria. Megrue called Born Free Africa “a quite broad constituency thinking about it and trying to make a difference.”

majority of these tragedies. “HIV is a huge issue globally,” says John Megrue, founder and chair of Born Free Africa. “Having newborn babies born HIV-positive is really a huge challenge.” And the objective of a new generation being born HIV-free, he says, was “something that I thought was central to success” in the fight against HIV/AIDS.

in 2012—an average of more than 700 per day • In children, more than ninety percent of new HIV infections are the result of transmission via pregnancy, childbirth, or breastfeeding • Nigeria accounts for more than one-quarter of newly infected children each year

The Problem of Perinatal Transmissions In affluent countries, mother-to-child HIV transmissions have become quite rare. The Centers for Disease Control and Prevention says that perinatal transmissions in the U.S. have dropped by more than ninety percent since the mid-1990s, even though the number of HIV-positive women giving birth has increased dramatically. But there are still many countries, the vast majority of which are located in Africa, where such transmissions remain a serious issue. According to Born Free Africa: • Worldwide, mother-to-child transmissions peaked in 2003 and have declined more than fifty percent in subsequent years • 260,000 children were infected

• Twenty-two countries account for more than eighty percent of cases. “It’s a systems problem,” Megrue says, referring to the barriers that must be overcome in order to halt mother-to-child transmissions. “We’re all working together to solve these challenges.” Countdown to Zero Transmissions The Born Free Africa Web site features a prominent countdown clock: the “countdown to zero transmission.” As of May 29, it stood at 581 days, with the green and white hours, minutes and seconds all marking progress toward December 31, 2015. The specificity of the clock reflects an ambitious goal: halting mother-to-child HIV transmissions by the end of next year. Why 2015? The deadline came out of Millennium Development Goals set by UNAIDS. Among ten “targets and elimination commitments” set by UNAIDS is the goal to “eliminate new HIV infections among children by 2015 and substantially reduce AIDS-related maternal deaths,”

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according to the 2011 United Nations General Assembly Political Declaration on HIV/AIDS. The Millennium Development Goals were set in 2000, Megrue notes, with enormous strides made in subsequent years. In fact, Born Free Africa says that new HIV infections in children have declined by fifty percent between 2003 and 2012. But there are still more than 200,000 annual transmissions worldwide, says Born Free Africa, with ninety-eight percent of those being completely preventable. But there are persistent challenges—funding issues, for one thing—that must be met before a generation born free can be achieved. Navigating those challenges, Megrue shares, called for high-speed, fast-paced decision making—“and that plays to the private sector’s strengths.” That’s where Megrue, chief executive officer of the private equity advisory firm Apax Partners, came in. In 2011, the U.N. tapped Megrue, a longtime philanthropist with experience working in Africa (largely on issues related to poverty), to get involved. As a result, Born Free Africa was formed. In addition to Megrue, the organization’s advisory board includes CEOs and other power players from companies such as Chevron, NBCUniversal, J.P. Morgan, Johnson & Johnson, and GE Healthcare. “Being part of something that the private sector can have such an influence in has been incredibly joyful,” Megrue says.

photos courtesy Born Free Africa except: fashion photo by Robert Massman/robert@robertmassman.com

Making Prevention Fashionable In Africa, Born Free Africa does work such as hiring talent and providing

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Top: Model Sasha Pivovarova and her daughter pose for a Born Free fashion campaign wearing Alberta Ferretti, who incorporated into the design an exclusive pattern print by Kenyan artist Wangechi Mutu. Bottom: A health worker in Khayelitsha Township, South Africa, is interviewed as part of a documentary film project to explain mother-to-child HIV transmission. Opposite page: A mother in Khayelitsha Township shares her story with John Megrue, Chairman of Born Free Africa. training for healthcare professionals. The organization also hosts visits from governmental and other leaders who come to see how mother-to-child transmissions are being combated. In addition to its on-the-ground work, Born Free Africa puts its resources to work to raise awareness. For example, Megrue partnered with Vogue, Diane von Fürstenberg, Claire Danes, Liya Kebede and Wangechi Mutu to host a Mother’s Day Carnival in support of Born Free Africa; he called the event “a real crescendo of consumer awareness.” Held in New York, the event featured performances by Ariana Grande and Idina Menzel. It also included family-oriented activities such as family portraits, cookie decorating, yoga, arts and crafts, face painting with M•A•C makeup artists, soccer with the New York Red Bulls, and basketball with the New York Giants. There were many high-profile guests in the crowd, including actor Matt Bomer and designers Ivanka Trump, Vera Wang and Donna Karan. Trump, Wang and Karan were also all part of a Born Free Africa initiative to raise awareness through a partnership with the fashion industry. Earlier this year, they and nineteen other prominent designers—all of them mothers—designed items for a limited edition Born Free Collection, sold via

ShopBop.com. The collection’s array of tees, scarves, bags, pants, blouses, skirts and other items are based on the work of New Yorkbased visual artist Wangechi Mutu, who was born in Kenya. Proceeds from sales of the Born Free Collection items benefit Born Free Africa, with a M•A•C AIDS Fund matching grant for up to $500,000. “As a mother and as a fashion designer, Born Free is everything I believe in—taking care of mothers so they can take care of their children, which takes care of the world. That I could do all this through creativity was perfection,” Karan tells A&U via e-mail. “When you think about the vulnerability of new mothers and their babies, you’ll do anything to eradicate the transfer of HIV from one to the other.” Karan says she was “completely inspired” by the Born Free campaign. “Whenever you have a creative avenue to fight a real threat, it brings out the best in everyone,” she says. By bringing out the best in everyone— from fashion designers to government leaders and private sector CEOs—perhaps Born Free Africa can build the awareness and support needed to reach its ambitious goal of wiping out perinatal transmissions of HIV. For more info, visit: http://bornfreeafrica.org. Stevie St. John is a freelance writer in Los Angeles, where she serves on the board of the local chapter of the National Lesbian & Gay Journalists Association (NLGJA-LA).

Zen

Zen and the Art of Letting Go Dr. BJ Miller Helps Create a Caring Circle at Zen Hospice Project

he sign on the white Victorian ity, providing 24-hour nursing care as gularly and uniquely positioned to honor house on Page Street in the an independent non-profit, without any those gifts. This affable doctor with boyish Hayes Valley neighborhood government funding. Last year over sevengood looks and a palpable compassion of San Francisco reads “Zen ty-two residents and 290 family members connects to his own journey as a reflection Hospice Project,” but the roots were part of the ZHP circle. Their trained of how healing can come out of challenges, of this building go much deeper than its Volunteer Caregivers also serve at Laguna and hope out of darkness. current incarnation as home to chronically Honda Hospital, extending its compassionBJ was raised in Chicago, Illinois. His ill patients, including those with AIDS (six ate reach. They provide daily support on the mother, a survivor of childhood polio, used months to live or less). sixty-bed hospice and palliative care floor at braces and crutches during his childhood, Its history is tied directly to the AIDS the hospital, one of the largest public longand in later years, a wheelchair. From a crisis in America. very early age, The residential BJ was aware facility was origithat people were nally established more than their in 1987 by the bodies. Growing San Francisco up “just knowing Zen Center to in my bones that provide commulife was more nity-based hosthan body parts pice services to was an incredible San Francisco’s gift. And she indigent cancer helped me realize patients. the myth of The AIDS epindependence at idemic changed an early age—no that mission. one is absolutely Suddenly the independent, so center’s Guest drop the striving! House was on Rather, we can the frontlines, at celebrate the fact the very heart of that we are interthe firestorm. As dependent.” one of the first His compasresponders to sion may have the crisis, mostly seeds in his family volunteers at the experience, but Guest House it was forged in Dr. BJ Miller (far right) on the stoop of the Zen Hospice Project with (from left to right) provided care for an event that changed his Mary Knopt, Nurse Manager, Jeff Leaver, Resource Nurse, and Maysie, BJ’s dog AIDS patients life completely during his where others would not. Fear and misunderstanding were replaced by compassion and support. ZHP is technically not a hospice but rather a licensed residential care facil-

term care facilities in the United States. ZHP emerged as an enduring gift from those terrible years of the AIDS epidemic. Its current director, Dr. BJ Miller, is sin-

sophomore year in college. While attending Princeton—studying art history—the strapping 6’5” BJ left a party to hang out with friends. He impulsively decided to jump on top of a A&U • JULY 2014

photo by Diane Mailey

by David Rosenberg

exterior photo by Jim Block; portrait by Teresa Kennett

tram train car that ran at the University. The wires were live and 11,000 volts shot through his body. The resulting burns left doctors no choice but to amputate his left hand and both his legs below the knee. The pity period was brief, as BJ moved forward into life as a triple amputee. These seemingly devastating injuries— which to some appeared to be a huge hurdle to overcome—surprisingly resulted in very little lingering trauma for BJ. “The injuries furthered and confirmed traits and thoughts and behaviors already in me, and they allowed me an excuse to cease comparing myself constantly to others, and to own my life in a new and welcome way.” A further loss when his sister committed suicide led to his decision to become a doctor. “It was the chance to transform suffering into something positive.” He completed his MD degree as a Regents Scholar at the University of California, San Francisco, did his internal medicine residency at Cottage Hospital in Santa Barbara, where he served as Chief Resident, and continues to attend at the Palliative Care Service at UCSF. His physical differences, to an outsider, might seem to be a barrier to doctor-patient relations, but in fact the topic hardly ever comes up. Instead, it is a communication of unspoken empathy. “The patients, when they first meet me, understand instantly that I have been in the bed.” Dr. Miller and ZHP seem to be a perfect fit. His vision of a unique approach to its HIV and chronically ill patients works

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off a new integrated model for end of life care, one very rare in the entire country. It is evident immediately in the physical structure of the building. There are six beds in five private suites—all with high ceilings and natural light. Victorian-style living rooms with fireplaces provide common space for families to gather, along with an outdoor garden with flowers and benches, and access to a nearby park. The key to ZHP’s groundbreaking success is its focus on caregiving as a significant and deeply human service. Inspired by the practice of alleviating suffering, ZHP takes a secular approach to addressing the unnecessary anguish and stress associated with facing mortality. By integrating deep compassion and inter-connectedness with advanced clinical care, ZHP attends not only to the physical pain of those facing end-of-life, but also to the complex range of emotional, spiritual, and existential issues Dr. Miller and Viv, a ZHP resident felt by the dying as well as their loved ones and caregivers. It is stories. There is a flower petal ceremony BJ’s hope that it is a transformative expe- as they leave the house for the last time, or rience for the entire circle. simple meditation gatherings. Twice a year The resident determines and leads an evening of remembrance is also hosted. the treatment protocol, and not the other At ZHP, being grounded in the present way around. At the Guest House, nursing does not lessen the need to honor the past. staff are available around-the-clock and “I think one of the wonders of the past coordinate with Volunteer Caregivers many years is that HIV is not the wholly to provide symptom management and unique phenomenon it once was. Now it is emotional support. Available therapies part of a larger sphere, and with that it has including massage and live music, and more in common than in conflict with the appealing nutritious food is prepared rest of human miseries and inspirations. for all visitors. In addition, there is By virtue of where we live, and the history space for residents and their families of Zen Hospice, it is, however, always to explore spiritual or existential issues among us, one way or another.” that may be important to them, such For now, BJ is energized by his intias their fears or sense of purpose mate work among those who are in their and meaning in life. Such support is final months. “We all suffer, and we all die. offered for all residents as they desire, Those common bonds give us all hope for with respect to their particular beliefs a life well-lived.” At Zen Hospice Project, or lack thereof, in order to help them Dr. Miller is making that hope a reality. find what peace and comfort they may during this very challenging and David Rosenberg is an L.A.-based TV writer. He profound time. was a Humanitas Prize finalist for his work on the Nickelodeon series Rocket Power, and is currently When a resident passes away at writing Lost Treasure Hunt, an animated history the Guest House, their death is treated series pilot for children airing on PBS in the fall. with as much respect as when they He is also founder of SoldierCare, a humanitarian were alive. ZHP offers several passing nonpolitical outreach initiative for wounded and rituals, but only with the consent and PTSD veterans, and has advised GrassrootSoccer, decision of the surviving family. This the global children’s HIV/AIDS initiative. He procan be a bathing ritual, where family filed GRS founder and Survivor winner Ethan Zohn members anoint the body with an herb (November 2003) and male model turned activist Lane Carlson (November 2008) for A&U. tea, as a chance to gather and share

A&U • JULY 2014

Stepping Back Michael Urie Discusses the Importance of the Arts in Teaching Life’s Lessons by Dann Dulin

photographed exclusively for A&U by Annie Tritt

y favorite Pandora station is ‘Herb Alpert and the Tijuana Brass’!” boasts Michael Urie with stirring delight. He then air trumpets a few notes from the 1965 hit, “Whipped Cream.” An old fan of The Four Seasons, Neil Diamond, Karen Carpenter, Mama Cass, and Barry Manilow, he’s even a self-proclaimed “Fanilow.” “I am not of my time,” he reveals.

JULY MAY 2014 • A&U

“I consider myself lucky to be alive today....I might have been promiscuous and would have been in the middle of it all—in the middle of it! And had I not died during that time, I probably would have witnessed others dying.”

From the living room of his publicist’s Hollywood Hills home, an indefatigable yet somber Michael carries on. “I consider myself lucky to be alive today,” he says. “I might have been promiscuous and would have been in the middle of it all—in the middle of it! And had I not died during that time, I probably would have witnessed others dying.” Gloom sweeps across his boyish face. On a brief visit to Los Angeles from his New York residence, he’s set to embark on a national tour (first stop, Chicago) of his award-winning one-man off-Broadway comedy, Buyer & Cellar. Michael plays many characters in this Jonathan Tolins-penned account of a jobless actor who finds work in the basement mall of Barbra Streisand’s Malibu compound. He even portrays The Diva herself. Michael’s last New York performance was in March. “Being on stage by yourself is scary, but it’s a blast,” he concedes. “I still experience the terror. I ask myself, ‘What if tonight’s the night that I forget it all?!’ It’s not easy, but it’s become manageable.” As far as he knows, Streisand has never seen the show and he’s curious if she’ll appear in the audience when the show comes to Los Angeles this summer. “Of course she’s aware of it but I don’t particularly want to… invite heeeer, ” he says cautiously with a lilt. “She doesn’t need to see it.” He ponders for a moment. “But I think she’d like it if she saw it on her own terms. I don’t know if it’s fair for her to watch it with an audience. Maybe she would like a command performance or a video.” He wonders. Ensconced in a high-back wood-armed King Henry VIII chair covered in a grayish classic music-themed pattern, this afternoon Michael is friendly, dapper, and bouncy. His overall presence constitutes a childlike spirit of wonderment. He’s not unlike Marc St. James, the popular character he played for four seasons on the celebrated sitcom Ugly Betty (2006– 2010). Urie was originally to appear in just one episode, but his talent and chemistry with co-star Vanessa Williams won over the producers, and he became a series regular. He JULY 2014 • A&U

rocketed to fame. During the filming of Ugly Betty, the writer’s union went on strike and production shut down. Not one to remain idle, Urie liberated a passion. He made a documentary film about his high school Speech & Debate Club, where he won a national championship in 1998. Thank You For Judging chronicles the tumultuous journey of several students who compete intensely in a State tournament. Co-directed by Sean Fornara, Michael did not intend to appear in the film, but his own success gives relevance to an event that’s close to his heart. The opportunity of playing multiple characters at these tournaments laid the sturdy foundation for Urie’s acting ability. The touching, absorbing film is now on DVD. During our time together, Michael expresses great pride in this project. In 2009, Michael performed Off-Broadway in The Temperamentals. For his portrayal of Rudi Gernreich, one of the founders of The Mattachine Society, a gay activist’s group in the closeted fifties, he received a Lucille Lortel Award for Outstanding Lead Actor. “One day the playwright phoned to tell me that I was ‘too Ugly Betty’ at a particular performance, after I’d been shooting Ugly Betty all day,” Michael giggles. In 2012, he debuted on Broadway in How To Succeed In Business Without Really Trying, appearing alongside Nick Jonas and Beau Bridges. Next, Michael returned to the tube in the short-lived sitcom, Partners, from the creators of Will & Grace. The publicist’s dog begins to bark in the hallway. Michael, dressed in semi-snug jeans and a long-sleeved, thin ash-grey hoodie, picks up a ball and tosses it. Tallulah (named after the feisty headstrong actress, Tallulah Bankhead) proceeds to chase it. The publicist appears to politely escort the Polish Lowland Sheepdog to another room. Just last year Michael, sadly, lost his beloved dog, Sprouts (Tallulah and Sprouts were playmates), and now has a Chihuahua/Boston terrier mix named President McKinley, which he calls “Kinley.” Active in the HIV/AIDS community, Michael shares that his focus and his on-going mission is

to keep the epidemic center stage. “There’s no way that people my age and younger can fully understand the depth and impact of the beginning of the AIDS crisis,” he tells me, finishing a fresh orange and then pitching a couple of peels with an overhand throw into a drinking glass on the coffee table. “That’s why it’s so important to keep this time in our history alive—obviously, it’s not just an LGBT issue—but especially now that the LGBT movement is so big and moving so quickly.” Hailing David Mixner [A&U, July 2002] as a hero of the epidemic, Michael cites the author and civil rights activist: “‘We lost a generation of storytellers.’ That to me is part of the reason why many of these seventeen-year-olds don’t know about AIDS, because the stories are not being told. It’s partially our fault as a society for not seeking out those who were there and listening to their stories. Of course, the sad truth is that a lot of them are gone.” He folds his arms and lowers his head. “And some of them don’t want to talk about it because they don’t want to relive it. I understand. So it’s our responsibility to carry it on.” The arts are the finest educational tool, he urges, mentioning the recent airing of The Normal Heart on HBO. (A few years ago, he saw The Normal Heart on Broadway twice.) “So much of what I know about AIDS is from the theater,” he acknowledges. As a teen in Plano, Texas, Michael was deeply impacted by Tony Kushner’s Pulitzer prize-winning play, Angels in America. “I really fell in love with it!” he says with exhilaration. Just then, in another room, the phone rings. Clatter can also be heard throughout the house (a crew sets up for a photo shoot to follow), but Michael stays centered and authentic. “When I was fourteen, my sister, who’s seven years older and a lesbian, took me to a gay bookstore in Dallas. I had heard of Angels in America through Speech & Debate [in high school], so I bought it, and read it.” Michael’s history lesson of HIV/AIDS has been through plays and films like Philadelphia, Silverlake Life, and Longtime Companion. As a teenager, Michael’s bed-

photo courtesy Michael Urie

room was plastered with Batman posters that depicted the crime fighters confronting The Joker. Jack Nicholson’s portrayal of the villain inspired Michael to pursue an acting career. At nineteen, he was accepted to the Julliard School and he moved to New York. He became a member of the school’s Group 32, joining fellow student, Jessica Chastain. Several years later he received the John Houseman Prize for Excellence in Classical Theatre. Following Ugly Betty, in 2011 at age thirty, Michael landed a childhood dream. He was cast in the Off-Broadway revival of Angels in America, playing the haunting lead character of Prior Walter, a gay man battling AIDS. It was a mammoth undertaking. Urie endlessly researched the early years when the virus was rapidly spreading across the country, burying himself in the culture and climate of the times. He watched videos, read profusely, and sought out those who lived through the horror. He lost weight and applied pale makeup. “Playing that character was totally terrifying—especially dealing with the angst of those times. It was heavy for my thirty-year-old brain. I mean, just trying to imagine what these guys went through…,” he pauses, rigidly swallowing, then continues, “… who had AIDS….Terrifying. Just imagining what my life would have been like if I had contracted the virus….” There’s a moment of weighty stillness, then Michael flashes those “googly eyes”—a self-described term. I break the silence and ask Michael if he was ever promiscuous. “Not really,” he admits tentatively. “But had there not been AIDS, I might have. It’s so hard to know.” He crosses his leg, grasps his ankle, and twittels with the shoelace of his stylish black urban boots. “I was going from bed to bed but I was always safe—totally safe. I always have been aware of the risks.” For nearly six years, Michael has been in a monogamous relationship with actor and writer Ryan Spahn, who is the same age, and Urie asserts that they both get tested regularly. Over a span of two years, mutual friends, separately, tried to set them up with a date when they both lived in Los Angeles. It never happened. Eventually, they both relocated to New York and, coincidentally, so did one of the friends. “One day, the friend was very late to meet me, and Ryan was early to meet her, so we were left to our own devices. The rest is history,” he chuckles. This was Halloween. Michael humorously brings his hoodie up over his head then quickly doffs it, blazing that alluring smile. The couple often collaborates profesJULY 2014 • A&U

sionally. Last year Michael directed Ryan in Larry Kramer, got fired from their own the film, He’s Way More Famous Than You. organizations, because the organizations Ryan also co-wrote the screenplay. The wanted to become mainstream. Consecast included Ben Stiller, Jesse Eisenberg, quently, they ceased being radical.” Vanessa Williams, Natasha Lyonne, and Michael also did a workshop producMamie Gummer. Last month they did tion of still at risk, playing the character a reading of The Last Sunday in June, by of a young man who never lived through Buyer & Cellar playwright Jonathan Tolins the beginning of AIDS, very much like at Chicago’s About Face Theatre, whose ob- Michael himself. “It was interesting for me jective is to enlighten and empower others to get involved because I’m playing a guy about LGBT issues. Michael chose a Monwho thinks he knows everything, and I’m day night when Buyer & Cellar was dark. a guy who practically knows nothing.” Urie has been active in Broadway As he speaks, Michael oddly rests his Cares, appearing in its fundraisers, Broadarm atop his head stroking through his way Bares, Broadway Backwards, and generous cleancut acorn-colored wavy Easter Bonnet. He’s also participated in hair. A playful habit, it calls to mind a high AIDS Walks in Los Angeles, San Francisco, and New York. “I always leave AIDS Walks standing a little taller and misty. I’ll never get tired of hearing that song someone usually performs at the start of the Walk—‘You’ll Never Walk Alone,’” he remarks, adding, “Even though people are living longer with HIV, every year we get more people doing the Walk.” He’s plainly smitten with the event. But it wasn’t initially so. During his run on Michael Urie (right), with Michael Jay Ryan, in The Temperamentals Ugly Betty, he was invited to speak at the Los Angeles AIDS Walk school student intently concentrated and opening ceremony, though decided not enraptured with what he’s doing. “It’s to walk. He notes he wasn’t fully aware impossible for me to relate how it was of the power of the event until later. “It back then at the beginning of the AIDS hadn’t touched me yet. I didn’t realize I crisis,” laments Michael, leaning towards could be a part of the solution. It seemed me. He’s wide-eyed and his personality is impossible to me that I could make a as fresh as linen drying on a clothesline difference,” he recounts. in the afternoon sun. “Even knowing what “I’m thrilled to be asked now, because I I have learned, and pretending [acting] to feel that I can be of service. It’s so importhave gone through it, it’s impossible for ant for me to give back.” me to really know what… it’s…truly… like.” Some of Michael’s friends are Maybe so. HIV-positive. Over the years, some did However, through his compassionate not survive. His steel-blue eyes unexwork, Michael remains strident in his efpectedly squint and his nicely shaped forts to alert others about HIV/AIDS, keepeyebrows furrow. He looks consumed. “So ing the past present and always marching many people my age are truly less aware to a beat of his own rhythm. than I am…,” he notes. “I’ve been lucky enough to be immersed in it thanks to the For more about the photography of Annie Tritt, theater.” He lightly grins, bringing our log on to: www.annietrittphotography.com. conversation full circle. Recently, Michael read a modern play, still at risk, by Tim Grooming by Anna-Maija Webb. Styling by Pinckney, about how all of us can still be Divya Akhouri. infected. “It could be a companion piece to The Normal Heart,” he explains. “It’s Dann Dulin is Senior Editor of A&U. He interabout remembering the pioneers of the viewed The Normal Heart’s Mark Ruffalo for the AIDS movement. So many of them, like May issue.

Take Action! Gearing Up for the Second Annual African American Hepatitis C Awareness Action Day, C. Virginia Fields, President and CEO of the National Black Leadership Commission on AIDS, Helps Mobilize Communities Around HCV, HIV & Other Health Disparities by Chael Needle

e know that 3.2 million Americans are living with chronic hepatitis C but are unaware that they are infected. We know that an overwhelming majority (over seventy-five percent) are baby boomers. What you might not know is that hepatitis C has hit hard across communities of African descent. It is estimated that twenty-two percent of those 3.2 million are African-American. Among African Americans who are baby boomers, chronic liver disease is a leading cause of death—and this condition is often related to hep C. Additionally, hep C (HCV) infection among African Americans occurs at a higher rate than other ethnic groups. Among baby boomers, for instance, African Americans have one of the highest rates of infection, up to twenty to twenty-five percent. In fact, when it comes to HCV-related deaths, the mortality rate for African Americans is almost double that of non-Hispanic white Americans. Even though new treatments for hepatitis C are available and have rendered the disease curable, a vaccine does not exist and infection may persist for decades without symptoms. Prevention and early treatment are key, yet stigma, a lack of access to care, and expense often create barriers to often lifesaving testing and care. There’s no doubt that hep C is a deadly health disparity in the African-American community, and the National Black Leadership Commision on AIDS (NBLCA) knows it doesn’t need to be this way. NBLCA has taken action in response to the hep C epidemic, which often hews closely to the HIV epidemic. On July 25, the NBLCA is co-sponsoring, along with Coalition on Positive Health Empowerment (C.O.P.E.), the Second Annual African American Hepatitis

photographed exclusively for A&U by Alina Oswald C Awareness Action Day. The NBLCA is encouraging organizations around the country to mobilize their communities around HCV harm reduction,testing, and treatment on or leading up to the day. “In our ongoing work we have affiliates in eleven cities across the country, all chaired by members of the clergy. We reach out broadly in each one of those communities to develop partnerships and identify other community stakeholders to get the message out, through workshops, through public forums, through advocacy around specific issues,” explains C. Virginia Fields, MSW, president and CEO of NBLCA, about how the network helps to lead the response on issues like hepatitis C. Founded in 1987, NBLCA has affiliates in New York City, Nassau County, Albany, Syracuse, Rochester, Buffalo, Baltimore, Atlanta, Detroit, Tampa, and Washington, D.C., places where African-American communities have been severely impacted by HIV/AIDS. So far, over fifty organizations have heeded the call. Activities include oneday summits, which target a spectrum of healthcare professionals; public policy town hall meetings, designed to educate community stakeholders and policy makers about the impact of hep C with the African-American community; community-based workshops and trainings around HCV health literacy; outreach and testing events to increase linkages to care and treatment; as well as the Action Day itself. Already, HCV-related activities have sprung up or have been planned. A leadership forum on hep C took place at Howard University in D.C. in May. The Father to Father Support Group in North Charleston, South Carolina, offered HCV education and testing in the month of June. A community health fair in Tampa, Florida, on June 28

offered free and confidential HIV and HCV testing. On July 22, the Viral Hepatitis Summit at SUNY Downstate Medical Center in Brooklyn will raise awareness about the latest in HCV-related research and treatment, as well as the impact of HCV among African Americans. And on the Action Day itself, in Washington, D.C., the NBLCA is partnering with HCV Linkage to Care Navigation at MedStar Washington Hospital Center for a day-long event that offers education and access to services for those living with and at risk for HCV infection. The campaign’s goals are clear: increase hep C awareness, testing, access to treament for those who are HCV-positive, and, in the long run, decrease the number of people infected. “Two years ago, we were a part of a coalition to amend the New York State public health law around routine HIV testing, which now requires public health facilities and doctors to offer everyone between the ages of thirteen and sixty-four routine HIV testing because here, in this country today, we have over 50,000 new cases and African Americans are predominantly impacted,” says Fields, about the need for advocacy. “[This year] we have recently advocated, along with other organizations, for the State of New York to have the first hepatitis C legislation in the country.” That bill, which requires medical practitioners to offer HCV testing to all patients born between 1945 and 1965, was signed into law last October. While New York was the first state to adopt HCV testing legislation, NBLCA hopes it won’t be the last. The non-profit is supporting similar bills in other states, including Maryland, Pennsylvania, Connecticut, Michigan, and Florida. NBLCA also works to encourage the A&U • JULY 2014

passage of federal legislation. The organization initiated The National Black Clergy for the Elimination of HIV/AIDS Act of 2009. The comprehensive proposal to address HIV/AIDS in African-American communities head-on resulted from a gathering of leaders—clergy, mayors, Congresspeople, health professionals, and state legislators, among others—that NBLCA brought together in 2007. The bill has yet to pass, though it has been introduced more than once. Part of the work of NBLCA, the oldest and largest non-profit organization of its kind in the U.S., includes persuading policymakers to appreciate how legislation can help reduce health disparities and how funding on all levels of goverment can improve health outcomes across communities. But it also works with organizations to provide technical assistance, help shape public policy, and lend expertise to community development. “So, through these various means the National Black Leadership Commission on AIDS’s ongoing work provides capacity building to institutions and organizations so they can better improve their work, with the broad groups that they work with in getting the message out, through training, advocacy, development of resources at the community level to make sure that organizations that provide treatment and care have the resources in order for them to do their job,” says Fields. The need is urgent. According to CDC statistics reported in the February 7, 2014 edition of Morbidity and Mortality Weekly Report, African Americans make up forty-four percent of new HIV infections and also forty-four percent of people in the U.S. living with the infection. Considering that African Americans only compose twelve percent of the U.S. population, the numbers are alarming. When it comes to how members of this community fare within the continuum of care—knowledge of status, linked to care, retained in care, adhering to antiretrovirals, and achieving viral suppression—the news is not good. The percentage of African Americans who have been diagnosed HIV-positive and making headway toward

viral suppression are lower than for other racial/ethnic groups. In particular, African-American men were reported to have lower levels of care and viral suppression than African-American women. When we look at the numbers through the lens of transmission category, African-American men with HIV infection attributed to male-to-male sexual contact had the lowest percentage of linkage to care—71.6 percent. Not surprisingly, the Commission’s top

priorities this year are focusing on awareness, counseling and testing, and linking to care. “When there is early diagnosis and a person moves into treatment and gets care—and remains in care—the likelihood of having a better quality of life increases. So we’ve been focused a lot on encouraging people to become aware, get tested, get treated if needed. If one is negative, simply practicing ways to remain negative.” The Commission is also currently A&U • JULY 2014

working to enforce comprehensive sex education in public schools as a way to step up prevention efforts. “We must do more there because we have increased rates of sexually transmitted infections among young kids, as young as twelve years-old….” She adds: “The group with the highest rate of HIV infection is now our young Black gay men between the ages of thirteen to twenty-four. I can’t help but think that at age thirteen awareness education is important as they JULY 2014 • A&U

struggle with other issues, psychological increase risk. Additionally, individuals often and otherwise.” cannot negotiate safe sex with their intimate NBLCA may focus on singular issues, partners, face violence in relationships, and like hep C, but it understands them within stay in situations because they are financialthe complex matrix of multiple factors that ly trapped—all may lead to situations where impact HIV. It’s an approach that always risk is heightened. keeps the whole person in mind along the Access to housing is also important in continuum of care. the fight to eliminate health disparities. That’s why education needs to be “Housing helps sustain their lives, as, numpaired with addressing stigma and disber one, [individuals who are living with crimination, she says. And the NBLCA has HIV and linked to care] are in a better pomounted a national campaign to address sition to stay on their medications because these pernicious barriers. Says Fields: they have a stable living situation,” notes “We recognize that hepatitis C and HIV Fields, who tirelessly advocated for those continue because of stigma and discrimexperiencing homelessness as Manhattan ination. Sometimes people don’t want Borough President in the eighties. “If you to get tested because they don’t want to are out on the street, and you’re homeless be stigmatized or ostracized and, if they and you’re living with HIV, you’re not thinkdon’t get tested, that of course is going to ing about taking your medications. prevent them from seeking treatment.” “Those are some of the key factors that Asked what she thinks accounts for we must consider and continue to work on.” stigma and discrimination, she is quick NBLCA is laying the groundwork to to answer: “Racism. move into advocacy Homophobia.…And “We’ve also focused a lot around decriminalignorance, too! The azing HIV. “We do fact that people really on healthier communities in support it but we still don’t have a full general, trying to promote how haven’t become a understanding about leader on that yet. the transmission of to live, and [in turn] sustain We’re working with HIV and how you healthy communities...” Catherine Hancan’t get it just by senns at the Center touching someone for HIV Law and who is living with Policy and they’ve been doing phenomenal the virus. We still find to this day a lot of misinformation, and misinformation leads work. [As always] we partner with the leadto stigma. It’s alarming. ers [on any particular issue] and use a lot of “We’ve also focused a lot on healththeir research and data that they provide, ier communities in general, trying to especially around those states where we promote how to live, and [in turn] sustain have various rights initiatives, where they healthy communities,” says Fields about have some of the Draconian laws when it NBLCA’s embrace not only of HIV and comes to criminalization.” hep C, but cancer, high blood pressure, NBLCA is committed to helping African diabetes, and lifestyle changes that proAmericans become more empowered when tect oneself, one’s family, and ultimately it comes to their own health and well-being. one’s community. But it is also about Says Fields: “I think education is the most making large-scale social changes that powerful tool for people to become more benefit communities feeling the burresponsible for their own health. There’s den of years of racism, exploitation, and a lot of information out there, but it’s not disenfrachisement. “Healthier” is achieved getting to people who need it. So I think we “through education, through awareness, need to do more on-the-ground work, more and understanding the factors that impact staff-intensive, more resource-intensive a healthier community, like poverty. We [work]. We have to so that we can help peorecognize that poverty is a major driver as ple understand what the risks are, whether it relates to HIV/AIDS and other health disit’s related to HIV, various forms of cancer, parities, so we’ve been doing a lot focused on: what must we do to address poverty as it heart disease, or hepatitis C.” impacts HIV/AIDS?” She explains that poverty becomes a driver of disease because of the environment of risk it creates when it comes to relationships and sex. Practices such as trading sex for money or having sex with individuals whom you do not know often

To learn more about the Second Annual African American Hepatitis-C Awareness Action Day and how to participate, or NBLCA in general, log on to: www.nblca.org. Chael Needle writes A&U’s monthly Treatment Horizons column.

Talk to

Author & award-winning public speaker Scott Fried teaches us to speak “adolescent” when educating our youth about AIDS and life’s other topics by Alina Oswald

just say that opinions, no matter how well intended, vary widely. Some adults point at youth’s complacency regarding HIV, while some adolescents argue that they are not given enough credit when it comes to understanding the importance of AIDS prevention and education. Considering both sides, the truth may lie in an intergenerational conversation, or lack thereof, for that matter. In other words, the best way to get our well-intended messages across, be that about life in general or AIDS in particular, is for adults to learn how to communicate with youth. And while this is not an easy task, there is hope. That’s where Scott Fried comes in to help both adults and adolescents truly communicate. Diagnosed with HIV in 1987, at the age of twenty-four, Fried started talking to teenagers, sharing his HIV story, hoping that he would be remembered in their collective memory. But as he reached that goal,

he has continued to teach adolescents, so that they would know what he didn’t know when he was their age. Today, Scott Fried is the author of several books, and an award-winning international public speaker. He is also the annual guest speaker at the Office of President Clinton, in New York City, where he talks to new interns about HIV/AIDS. I caught up with Fried as he was getting ready to travel across North America to talk to thousands of teenagers, their parents, and educators. Alina Oswald: So, why is there a disconnect between adults and adolescents? Scott Fried: Teenagers today are hungry for the truth, and it is the truth that they are not being told. If we want to get their attention, we can start by being more original. We can stop lying to them, because they know that [we are lying.] A&U • JULY 2014

photo by Tony Webster

et’s face it. Nowadays one cannot talk about HIV/AIDS without bringing up the topic of youth and AIDS. And when it comes to talking to the youth about AIDS, well, let’s

them, because they respect the truth. Second is to lay down one of our cards. Reveal one of the truths we don’t often reveal or disclose. I [tell] them about how I got infected with HIV and when, how I survived....It qualifies me, in their presence, as trustworthy. If I could make these mistakes, and learn from them and share them, they can talk about the mistakes they are about to make or might have already made, and share and learn from them. So to get teenagers to listen to you, you got to tell them your truth. Hearing the truth from an adult whom they respect inspires them to want to make change in their own lives. Third is listening for what else we’re not saying. So, when we talk to teenagers, we have to make sure that we are listening to how they are listening to us. Are we preachy? Are we being judgmental? Are we coming from a place of love or of fear? Why is it so difficult, for most adults, to deal with adolescents? Let me let you in on a few things. Any doctor, psychologist [or] teacher would tell you the same thing. The brain is not developed until you’re twenty-four or twenty-five. At fifteen or sixteen, the part of the brain that controls impulses, many decision-making processes, activities, especially reckless ones [teenagers] do, is not developed. And that’s why we see teenagers acting out in ways that adults won’t. To be an adolescent is to be a contradiction. And to be a contradiction as a teenager means, on one hand, they don’t want you to know their deepest secrets; on the other

photo by Scott Fried

What should adults say or not say? For example, instead of saying “you can tell me anything,” [parents of teenagers should] say, “I want to be a person whom you can tell anything to.” That’s a very big difference. If I turn it around and make it about me, it makes me trustworthy. Then [teenagers] can trust me, and tell me anything. You mentioned lies. What are some lies adults tell teenagers, purposely or not? The most pernicious of all lies we tell teenagers is that time heals all wounds. It’s not true, because once their hearts are broken, [teenagers] don’t understand why it’s taking so long to heal. How should adults approach a conversation with teenagers? The place to start is to be honest with JULY 2014 • A&U

hand, they wish there was someone who knew their secrets. So teenagers live in this paradox. It’s a delicious contradiction for me as a teacher, not so delicious for them.

Why is it so hard for teenagers to deal with the paradox of life? Teenagers absorb the shock of life for the first time, being assaulted, haunted and hit with [heavy] emotions for the first time. They don’t know how to communicate from fear of being rejected, and [wonder if they can trust us.] One of the reasons many teenagers act out in reckless ways is [to test their parents’ unconditional love.] But trust needs to be learned. Unconditional love needs to be proven. You also talk about God, bullying, selfharm, eating disorders. How are all these topics related to AIDS? They are not. They are other topics I talk to teenagers about, because there’s more to a teenager’s life than comprehensive AIDS education. So, I would tell my [HIV] story to an auditorium of a thousand teenagers, and they would hear my story from their life’s experiences. A teenager who has bulimia Teens praying at a will hear it synagogue service from her perspective. A teenager whose brother is getting stoned every night after dinner is going to hear it from that perspective. So, it’s not just about HIV. It’s about the risks that we take in order to feel that we’re safe in the world or that we have a place in this world. Why is it important to talk to teenagers about all these topics? continued on page 70

the

Price of Zero Drug Policies in Former Soviet Republics, Like Georgia, Are Spiking HIV and HCV Rates by Larry Buhl

eorgia is facing the same problem as other Soviet republics: a surging rate of HIV and hepatitis C (HCV). Harm reduction advocates and NGOs have concluded that these surges have been exacerbated by government policies on illegal narcotics. Russia, Georgia, and the Ukraine have very strict drug laws that mandate prosecution and punishment of users, instead of treatment or prevention. But Georgia has been particularly fierce in criminalizing drug use and “hunting” IV drug users. To make matters worse, a lack of emphasis on treatment and education means people are unreachable by HIV prevention/ harm reduction programs, according to Maka Gogia, Program Director for the Georgian Harm Reduction Network (GHRN), a group of non-governmental organizations that advocate the use of public-health policies to reduce drug abuse. “What contributes to the rise in blood-borne infections like hep C and HIV are harsh drug laws combined with the lack of free treatment programs,” Gogia tells A&U. The GHRN estimates 45,000 drug addicts in the country. But there is only one detoxification center for all of them—a one-month free program located in the capital, Tbilisi, that can accept only two dozen people at a time. A methadone-substitution therapy program can accommodate 1,300 patients in eight towns across the nation. Beyond that, nothing. “When you want to register for a treatment program, you must stay on a waiting list until someone leaves the program,”

Gogia tells A&U. “During that time the police have a record of you being on that wait list, and that causes people to not sign up.” While the government of Georgia has little money to invest in drug treatment and education, it is reaping a small fortune from cracking down on users. First-time offenders who use a narcotic without a doctor’s prescription can face a fine of 500 lari (US$280). That’s nearly half of the average per-capita monthly income in Georgia. On the second offense within

the same year, the fine is 2,000 lari, (US$1,125) or one year in jail. In 2007, the latest year for which data is available, drug fines brought in 30 million lari ($16.9 million) to the government of Georgia, according to a report by the Beckley Foundation Drug Policy Programme, a United Kingdom-based research center. The crackdown started in 2006 when a “zero tolerance” policy on drug use was introduced by former President Mikheil Saakashvili. That policy shifted prosecution from drug traffickers to users, and no distinction is made between possession of drugs for personal use and for trafficking.

Proponents of Georgia’s zero-tolerance drug policy point to the drastic reduction in imports of heroin and opium. But it hasn’t stopped IV drug use. In fact, Georgia has the fifth highest rate of injecting drug use in the world, just behind Azerbaijan, Seychelles, the Russian Federation, and Estonia, according to the UN World Drug Report 2013. With heroin and opium in short supply, Georgians who want a quick high are mixing cocktails called Krokodil, using readily available ingredients like gasoline, drain cleaner and cough syrup. Not only is this home brew highly toxic, it has made drugstores the new locus for cops to crack down on users. “Very often you will see police standing outside the drug store looking for someone who ‘looks like’ an addict who has purchased these ingredients and shake them down for money,” says Paata Sabelshvili, a programs manager at GHRN. “This is how the government collects money. Drug users are more numerous, so the government will do the plea bargaining agreement with them. The government doesn’t count those users as human beings. It will lock them up, sell their houses and let them die in prison.” Anecdotally police also have been known to take otherwise law-abiding people off the streets for random drug testing by urinalysis. Sabelshvili says these policies drive drug-dependent people underground where they dramatically increase their risk of contracting HIV, HCV and tuberculosis. “The rate of HIV in Georgia is still low, but it is increasing every year,” Sabelshvili says. “If you look at the key populations A&U • JULY 2014

that contract HIV, injecting drug users have been the majority, prevalence of HIV among men who have sex with men are increasing, but mainly for those who are injective drug users. This is because Georgia has the most repressive drug policies in the world.” Sabelshvili notes that they cannot collect used needles for a needle exchange program as many other countries conduct, because anyone caught with a syringe containing even a trace amount of an illegal substance risks jail time of up to fourteen years and huge fines. “All we can do is needle and syringe distribution,” he says. A recent report on drug policy in Russia to the UN Committee against torture, by the Andrey Rylkov Foundation for Health and Social Justice in Moscow, underscores links between the harsh drug policies, lack of treatment for IV drug users and the rise in HIV and HCV, not just in Georgia but also in countries throughout the region, including Russia, Estonia, and Ukraine. “Recent research showed that most (78%) patients with HIV/TB co-infection are drug dependent people,” the report states. In some cities in Russia, up to ninety percent of injecting drug users are infected with hepatitis C, it concludes. A few in the Georgian government have taken notice of these disturbing trends. In December 2013 an intra-ministerial council chaired by Justice Minister Tsulukiani JULY 2014 • A&U

proposed increased funding for prevention and treatment and public information, and making the use of illegal drugs an administrative, rather than a criminal offense. Last November, at the signing of the EU’s Vilnius agreement on cooperative measures, Georgian Justice Minister Tea Tsulukiani pledged to “reallocate resources from the ineffective prosecution and punishment of drug users to effective prevention and treatment.” Until legislation is passed, these recommendations for reform will remain on paper. The nation is scheduled to sign an agreement on closer longterm ties with the European Union on June 27. That signing is considered to be a big step toward eventual membership, but the EU has been silent on Georgia’s drug policies, and there is no telling when or if the nation will be invited to join the union. For now, activists, like those in the GHRN, and their regional representatives will continue pushing the government to change, through petitions and protests against the drug policies.

In October of 2013 Gogia and her colleagues created a network of People Who use Drugs in Georgia (called GeNPUD) under the framework of Global Fund Harm Reduction program. The network has created its statute, internal regulation, strategy, annual work plans for the long and short term, she says. “Our goals are first, change the drug laws, second, make the government increase funding for methodone programs, and third, promote the construction of rehab centers.” Gogia points to a large proposed rehab center in Tbilisi that the government has not yet built. “People need to understand the growing number of people with HIV and hepatitis here is not just a problem for drug users,” says Gogia. “It is a problem for the public health.” Journalist and novelist Larry Buhl writes A&U’s monthly Hep Talk column.

Another Kind of Morning

espite over three decades of research on therapeutic vaccines for the treatment of HIV, clinical advances have been slow in coming for this important class of drug. While there are a plethora of therapeutic vaccines in development, only a few have reached Phase II clinical trials. Combination HIV antiretrovirals (ARVs) have made daily use of ARVs more manageable and plausible for many HIV patients; however, the longterm effects of ARVs, cost, toxicity, drug resistance and treatment fatigue make the possibility of extended drug holidays, that a therapeutic vaccine could provide, even more alluring than ever before. Although programs like PEPFAR and The Global Fund continue to provide antiretroviral therapy to HIV-positive people in resource-limited countries, coverage is still limited and the goal of universal access is, in reality, unachievable. An effective therapeutic vaccine would stretch limited funding for ARVs by increasing the pre-ART time period and by redirecting funds during ART-free blocks of time, after the initial initiation of therapy, to others in need. Therapeutic vaccines are based on the premise of boosting the immune system’s response, enabling it to better fight and destroy HIV, both before and after it infects cells. Different forms of therapeutic vaccines target particular cells like dendritic cells or monocytes and attempt to elicit distinct types of natural anti-HIV immune responses. Diverse vectors or “delivery systems” are also being researched. The therapeutic vaccines currently being studied for HIV act against various sub-types of HIV-1. Some therapeutic vaccines are made for specific strains while others aim to be effective against a wide array of HIV subtypes, enabling them to work in a higher number of people with HIV. One promising strategy is the use of therapeutic vaccines in conjunction with viral host restrictive factors. We are equipped with a large and diverse set of proteins that inhibit the replication of retroviruses, including HIV. However, HIV has evolved to evade these responses. OyaGen is developing a Vif dimerization antagonist and an APOBEC3G agonist. This approach is both an antiviral and eradication strategy. These drugs could rid any viremia

not killed off by therapeutic vaccines, bringing patients to an undetectable viral load, or eliminating the virus altogether, by allowing cells’ natural defense against HIV to work while the virus is brought under control and CD4 counts restored by a therapeutic vaccine. The study of viral host restrictive factors is, of late, a dominant area in HIV pathogenesis research. Understanding and manipulating these viral host functions might lead to the ability to eradicate HIV infection, enable a durable ART-free remission of viremia and disease or provide new ways to treat HIV. At CROI 2014 this past March, therapeutic vaccines were discussed as a potential part of a cure strategy. Dr. Romas Gelezinuas from Gilead presented on the utility of therapeutic vaccines in combination with drugs that purge the HIV latent reservoirs such as HDAC inhibitors or romidespin, an improved HIV-purging drug being studied by Gilead, to patrol the body and pick off the remaining HIV-infected cells that are activated. He discussed preclinical results, presented at the 2013 AIDS Vaccine Conference last year in Barcelona, regarding a CMV-based therapeutic vaccine given to monkeys that appeared to produce a functional cure in fifty percent of the monkeys and generated an immune response of a depth and breadth never before seen. These results were the most talked about at the AIDS Vaccine 2013 conference. The second-most talked about study results were about an HIV vaccine called HIV Conserv, which while initially tested as a preventative vaccine, could possibly be a therapeutic vaccine as well, being used in the same way as the CMV vaccine would be in helping to suppress the last remnants of HIV in cells after the majority of the HIV-infected cells had been purged by immune-stimulating drugs. Also presented at the 2013 AIDS Vaccine conference were preliminary results of a Phase I/II study of a therapeutic vaccine, THV01, in development by Theravectys, a Paris-based biotechnology company. THV01

is a lentiviral vector-based therapeutic vaccine currently being studied in people with HIV. As a therapeutic vaccine, the goal of THV01 is to stimulate the immune system by delivering DNA into dendritic cells, instructing them to kill HIV-infected T-cells, generating a strong immune response. THV01 is based on research conducted at Institut Pasteur in Paris. THV01 uses a lentiviral vector to carry an immunogen to dendritic cells. A lentivirus is a group of viruses from the Retroviridae family and includes HIV. Lentiviruses usually have long incubation periods and can deliver viral RNA into the cell’s DNA inside the nucleus. They can infect non-dividing cells, making them a great vector for the delivery of HIV antigens. The vaccine is delivered by intramuscular injection. Lentiviral vaccines have been used to treat other diseases such as cancer. Dr. Carl June of the Pearlman School of Medicine made headlines for curing adults and children with end-stage leukemia with the use of an HIV-based lentiviral vector as part of a generation of Chimeric Antigen Receptors (CAR). Dr. June removed T cells from his patients and reengineered them to attack the cancer cells, effectively killing the leukemia. T cells are transduced by lentiviral vectors that will express components of a receptor that will then allow the redirection of transduced T cells against tumor cells. Several patients who participated in clinical trials utilizing this approach achieved remission and continue to be cleared of leukemia. THV01 is currently being studied in a Phase I/II double-blind, placebo-controlled continued on page 70 A&U • JULY 2014

illustration by Timothy J. Haines

hiv therapeutic vaccines try to come of age

lifeguide

All Around the World the war on hepatitis goes global

• A screening test for people at high risk of infection, and a second test for those who screen positive to establish whether they have chronic hepatitis C infection. • Alcohol assessment for people with chronic hepatitis C infection receive counseling to reduce alcohol intake for people with moderate or high alcohol use. • Recommendations on existing treatments based on interferon injections as

well as the new regimens that use only oral medicines. The WHO will update recommendations on drug treatments as new medications come to market. • Measures to assure the safety of medical procedures and injections in health care settings and among persons who inject drugs, and guidelines on the reuse of injection equipment and lack of screening of blood transfusions. These resolutions come as new life-saving drugs to treat HCV are entering the market. Direct-acting antivirals (DAAs), demonstrate cure rates of more than ninety percent and—this is crucial in lower-income countries—are easier to administer. And DAAs offer the unprecedented promise of global HCV eradication, especially in low- and middle-income countries where eighty-five percent of people with HCV live, according to Karyn Kaplan, International Hepatitis/HIV Policy and Advocacy Director for the Treatment Action Group, an HIV/HCV advocacy organization. Worldwide challenges Even as the WHO released its guidelines, it recognized some big hurdles in treatment. Possibly the largest of these is affordability. “The challenge now is to ensure that everyone who needs these drugs can access them,” says Dr. Peter Beyer, Senior Advisor for the Essential Medicines and Health Products Department at WHO said in a prepared statement. Dr. Paul Farmer, chair of the Department of Global Health and Social Medicine at Harvard Medical School wrote in a Washington Post editorial that the world faces a “1996 moment” in the fight against hepatitis C. “As in 1996, highly effective new therapies are coming online. Regimens containing sofosbuvir, in particular, have the potential to cure 90% of patients after just 12 to 24 weeks of once-daily pills. But is there a plan that can link funding to delivery for those living in poverty?”

Price drops coming? In February, more than forty international activists met in Bangkok to develop ideas for increasing international treatment access. Key issues addressed included intellectual property, patent updates, pharmaceutical negotiations and outreach to at-risk populations. But the pivotal issue was price, according to Karyn Kaplan of TAG. Kaplan tells A&U that the Bangkok meeting was “disappointing” on the affordability front—activists met with representatives from the largest pharmaceutical companies there—but she remains optimistic that prices for new DAAs in middle- and low-income countries will come down. And Kaplan points to the recent success of several nations—India, Egypt, Brazil, Burma, Kenya, and Mozambique in negotiating access to Gilead Sciences’ Sovaldi (sofosbuvir) at a steep discount. But before price negotiating can be effective, more countries worldwide need to make hepatitis C treatment a priority, she says. “The power comes from grassroots movements, where activists train about prevention and transmission and treatment,” Kaplan tells A&U. She said in that respect the HCV crisis and response mirrors that of HIV worldwide. “The difference here is there are six times as many people living with HCV as HIV.” Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His young adult novel, The Genius of Little Things, debuted last year. A&U • JULY 2014

illustration by Timothy J. Haines

he hepatitis crisis has been a global one for some time, but 2014 marks a watershed as NGOs, governments, activists, and pharmaceutical companies have set down important markers in how to address the pandemic. And they’re also beginning to acknowledge the enormity of the job in preventing, treating, and eventually eradicating the hepatitis C virus (HCV). World Health Organization (WHO) statistics show more than 185 million people are infected with hepatitis C worldwide. That’s about three percent of the world’s population, and six times more than those infected with HIV—with between 130 million and 170 million of them living with the virus chronically. Egypt has the world’s highest prevalence at fifteen percent, almost all of which consists of genotype 4—different countries tend to have different genotypes of the virus, something that adds to the challenge of worldwide treatment. Each year, 350,000 die of HCV-related causes. In May, the World Health Assembly (WHA), the decision-making body of the WHO, passed a Hepatitis Resolution, which commits the WHO and United Nations member states to urgent action to address HCV. The resolution sets policy that will help countries develop prevention, treatment, and harm reduction plans tailored to their individual populations. In April, the WHO released its first guidelines for the treatment of hepatitis C, including recommendations for how to increase the number of people screened for HCV infection, how to mitigate liver damage for those who are infected and how to select and provide appropriate treatments for chronic hepatitis C infection. Some specific guidelines include:

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AID OF

BOOKS

Sally Field Can Play the Transsexual: Or I Was Cursed by Polly Holliday by Leslie L. Smith A PressLess Book

n Sally Field Can Play the Transsexual, main character David Mathews’s memories are so ephemeral he deploys a mnemonic device to hold onto them. He plays back memories in his mind’s eye as scenes from Hollywood movies or episodic television shows, recasting the people in his life as actors. This device allows him to catalog memories for easy retrieval as if they were movie reels in canisters on an “imaginary shelf.” Without this device, he would only be able to remember the bare facts about his life. David is a prostitute who lives in New York City. For reasons he cannot fully explain, he always sees himself as Sally Field, the spunky actress from Norma Rae and Murphy’s Romance. He replays his memories of running away from home—hitching rides in big rigs and giving blowjobs to truck drivers— as scenes from Smokey and the Bandit. When he returns home to Arkansas, he meets a compassionate transsexual nurse who personifies Sally Field’s down-to-earth warmth and wisdom, and he realizes that the mnemonic device he uses as a crutch is constricting his life. David is a strong, athletic, and single-minded swimmer, but, as a man, he is drifting through life. When the book opens, he is dividing his time between a beach house in the Hamptons and an apartment in Manhattan. He is still turning tricks while living off of a trust set up for him by a friend, Robert Jeffers, who died of AIDS in the mid1990s. He has begun having bareback sex with strangers for fun and money. He has it with one-night stands and with clients who are willing to pay more

for condom-less sex. He doesn’t want to know his HIV status but assumes he is positive. He wears condoms with men who report themselves as negative but doesn’t wear them with men who report themselves as positive. Ironically, David came of age in the early 1990s and was indoctrinated into a belief system that precluded unprotected sex. In 1992, David’s friend, benefactor, and mentor, Robert, interviewed him and other rent boys for a magazine article about safe sex. All of the interviewees, including David, are quoted as saying “that no amount of money” could entice them into having unsafe sex. Now, David confesses he finds bareback sex to be extremely pleasurable and engages in it as a way to truly connect— skin-toskin— with other men. It is at this juncture that Robert’s ghost shows up to confront him about his risky behavior,

to guide him through a family calamity in small-town Arkansas, and to help him recover the memories he has suppressed for most of his life. Author Leslie L. Smith draws a parallel between David’s forgetfulness and the amnesia that has beset the gay community in regards to the AIDS crisis. No doubt, there is a gulf between the anger and activism of yesteryear and the apathy of today. But times have changed. David tells Robert, “Yours was the last funeral your friends attended.” Young gay men are coming of age during a time when HIV is an increasingly manageable disease through drug compliance. Pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP) are effective HIV-prevention tools. And bareback sex is a growing trend—albeit a controversial one—among men who have sex with other men. It is only after David’s memories come flooding back that he can come to grips with the changes that have taken place since Robert’s death without feeling paralyzed by heartache, shame, guilt, and fear, and finds his voice as an ardent and eloquent activist who is capable of envisioning a strategy for ending HIV and AIDS in his lifetime. —Sally Hessney

Wasn’t Tomorrow Wonderful? by Kenneth M. Walsh Magnus Books

hen I first met my current boyfriend, he had never heard of Everything But the Girl, the British band with Tracey Thorn and Ben Watt, more popular in my day than his. So I had the pleasure of playing the band’s albums for him (sparkly CDs replacing my old cassettes from the eighties), and hoping he would discover the wonderfulness of each track. He still thanks me continued on page 69 A&U • JULY 2014

4 1 0 2

L A É R T N O M 2 .1 T C O Y DA M A I NT: SUN EVEN

IN ASSOCIATION WITH MANY THANKS TO

BBCM.ORG FACEBOOK.COM/FONDATIONBBCM

A Calendar of Events

elebrate the twentieth anniversary of Help Is On The Way, the signature event of the Richmond/Ermet AIDS Foundation (REAF). Combining arts and AIDS advocacy, the non-profit raises funds for ASOs in the Bay Area by producing top-notch entertainment events. At Help Is On The Way, Northern California’s largest annual AIDS benefit concert, REAF will honor Aguilas, AIDS Legal Referral Panel, Positive Resource Center, and Abzyme Research Foundation. Of special note, Abzyme Research Foundation is the first HIV cure research group to be named as a REAF beneficiary. Creators of the popular #EndHIV and other cure-related social media campaigns, the foundation studies abzyme-related HIV vaccines and facilitates scientific and medical collaborations among leaders in the HIV field. Performers include Lucie Arnaz [A&U, July 2001], Richard Chamberlain, Carole Cook, Laurence Luckinbill, Maureen McGovern [A&U, January 1998], Florence Henderson, Alex Newell, cast members from Motown: The Musical, and many more. Food, drinks, fun and a silent auction will add to the festivities. Each organization gets to keep 100 percent of the proceeds of the tickets they sell. Date: August 24; time: 5 p.m. (VIP gala reception), 7:30 p.m. (performance); 9:30 p.m. (VIP dessert party with cast); location: Palace of Fine Arts, San Francisco, California; tickets: starting at $65. For more information, log on to www.helpisontheway.org and www.endhiv.com.

continued from page 19

the epidemic? I’m of the generation that went through high school not too soon after Magic Johnson came out as being HIV-positive. It was very much discussed at the time, including in my high school health education classes. But I don’t ever recall thinking of it within the context of an epidemic. It just registered simply as something I didn’t want to get. It wasn’t until I was older and came out that I tied HIV to an epidemic. When was your first encounter with HIV? It happened nine years ago when I was twenty-two. A guy I was dating found out he

And you might know that it was also turned into a dynamic film, too. How has the epidemic affected you? I’ve witnessed its effects on my friends who are positive. I remember ten years ago watching my friend take his cocktail pills for the first time. That always left an impression with me…. What’s your interest in helping others? I’ve been given a lot of opportunities in my life, and so volunteering in any form is my way of giving back. My form of giving, though, comes more in the form of pursuing a career which I feel will effect positive change in the world. After finishing dessert, we DoubleTree Resort by Hilton

stroll along the low-lit pier, leaning over the wood railing and continue. When did you first get tested? I was twenty-two. Now I get tested regularly. I’ve read articles about an increased rate of infection among young gay men in large cities. From my work, I’ve noticed HIV is not something young gay men think about, as compared to the preceding generation. Since AIDS is no longer a death sentence, some young gay men no longer view it in the context of an epidemic. One approach to decrease rates of new infections is to tackle the stigma associated with HIV, so that more young gay men will get tested. If positive, they will disclose their status, and hopefully practice safer sex with future partners. Of all the subjects photographed for The Gay Men Project, does any one stand out? I once photographed a gay Anglican priest in London. I was raised Catholic, and I still have a strong faith in God. I will always remember our conversation and the questions I was able to ask the priest. It was unforgettable. 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.

photo courtesy Hilton

RUBY’S RAP

was positive. We hadn’t been intimate yet, so I wasn’t in fear of having been infected. I knew very little about the disease, and so I went to the bookstore. I came across And the Band Played On. To this day it’s one of the longest books I’ve ever read. That really was my way of learning about HIV/AIDS. I highly recommend the book.

A&U • JULY 2014

Culture of AIDS continued from page 66

for the introduction. Readers of memoirs are quite like new boyfriends. They patiently listen to the writer’s old albums and either suffer through the trip down memory lane politely or suddenly, in a blast of bossa nova horns, get you. Thankfully, Wasn’t Tomorrow Wonderful? may become your new favorite groove. In his memoir, writer, editor and blogger Kenneth M. Walsh displays a deft ability to map the geographic moves of his childhood and young adulthood (Detroit to Phoenix to L.A., D.C. to New York City, his Emerald City) alongside his moves toward self-actualization, with all of the pleasurable enlightenment and none of the tiresomeness that often comes with learning about someone else’s journey. He mines his (and his family’s) foibles for comedy with the wry touch of Erma Bombeck. Adventures in babysitting and prank phone calling, dreaming of solving child abduction cases and

JULY 2014 • A&U

becoming a hero—all are a comic complement of his later years, such as discovering his roommate is a former porn star or being adjudged a Denis Leary look-alike by a waiter in Times Square after passing for Ethan Hawke in his younger days. The memoir is smart and funny, with a masterful command of cultural references (did you ever think you would hear the name of Joyce Bullifant again?). But he is unafraid to anchor each chapter with the emotional knots that did nothing to abate his social anxiety disorder—a testy relationship with his mother, fending off the homophobic voices that envelop every gay kid, his first fumblings toward love, a bittersweet reunion with his father. Here’s Walsh on finding a large mass on his left testicle during a tennis physical and convincing himself that the mere fact of being gay was to blame: “I was different, so of course my privates were too, my adolescent brain reasoned. He could tell I was gay just by looking at me down there. In my shame and fear, I told no one. I diagnosed myself with testicular cancer—some-

thing pro tennis player Butch Waltz had been battling around this time—and convinced myself it was caused by my disgusting secret, that I was sexually attracted to other boys, the same secret that had now cost me my friends.… While the whole thing seems difficult to believe now—even for me—you’d be surprised what fear and self-loathing can do to a young boy’s mind. The experience was a living nightmare that colors the way I view the world to this day. It wasn’t until I was twenty years old that I finally got up the nerve to see a doctor.…” And while HIV/AIDS only peppers the memoir, it’s this type of consciousness, Walsh realizes, that helps create an enviroment of risk for those whose lives have been devalued. —Chael Needle Sally Hessney is a program assistant at a nonprofit organization, where one of the educational missions is to educate teenagers about the dangers of binge drinking, prescription drug abuse, distracted driving, STDs, and other consequential issues. Chael Needle is Managing Editor of A&U.

Scott Fried continued from page 59

So they don’t get to feel that they’re carrying the burden of life’s demanding circumstances all by themselves. That’s why I’m there, to remind them that they don’t have to do this alone. Do you have a favorite topic? My favorite topic, which is the most controversial, is comprehensive sexual health education. Last night I was here in New York City, [speaking to a classroom full of teenagers]. When I said, how many in this room have had sex [and AIDS] education in school, all of them raised their hands. [But nobody raised their hands when I asked questions like] what does HIV stand for, how is it transmitted or how to use a condom correctly. So, comprehensive health education is not being taught in schools anymore, or not being taught correctly. Why do you think that is? Some parents would prefer to teach [their own children and pull them from health education classes]. I don’t have a problem with

Treatment Horizons continued from page 62

clinical trial in HIV-positive adults, conducted at twelve sites throughout France and Belgium. The goal of the study is to measure the safety and tolerability of the vaccine as well as its immunogenicity. Furthermore, vaccine efficiency is being evaluated by the interruption of the HAART treatment in all patients, including placebo. Thirty-six participants have enrolled in the thirty-six-week study. Study participants will be randomized into three arms where they will be given various doses of the vaccine or placebo. They will receive intramuscular injections of the vaccine or placebo at weeks 0 and 8. During this time antiretroviral treatment will be alleviated starting at weeks 7 or 2 before the first injection, depending on the half life of the ARVs used by the patients, and fully restored at week 9. ARVs will be interrupted at week 24 and continued based on viral load and CD4 count. The reason for alleviating ARVs during the vaccination phase is to allow for the vaccine to be effectively introduced into the cells’ nucleus. The second ARV discontinuation will monitor how the immune system responds to THV01. This trial is ongoing and preliminary results are expected in June.

that, but who’s going to teach [the parents] how to teach [their children, especially when the children don’t want] to hear about sex from their parents...because young people today are getting infected [with HIV]. Just yesterday, I took a twenty-one year old man who had just tested positive, to my HIV doctor. You also talk about HIV/AIDS in synagogues. Synagogues and Jewish state schools hire me to speak from a Jewish perspective. It’s another way to connect with teenagers and adults, to bring in the things I was taught as a Jewish teenager, and the principles and lessons that we, as Jews, teach and live by, to support my message of living a healthy life, and bring it closer to home. [AIDS] is not talked about in the Jewish community. I’m pretty much the “AIDS guy” in the Jewish community. You also talk about death. What effect does that have on teenagers who usually think that they are invincible? There’s a misconception out there that teenagers think they are invincible. That’s not true. They know they’re not invincible, so well that they get reckless in the first place. Life hurts for them. Grandparents die. Their grades are not high enough. They give their virginity to some guy who ignores them the As HIV remission-based research begins to secure a higher level of priority and attention, so does support of therapeutic vaccine research as one of many strategies towards a functional “cure” for HIV, where HIV patients will be able to take structured therapeutic interruptions. The number of people with HIV in need of life-long antiretrovirals will continue to grow despite the lack of new PEPFAR and Global Fund donors. Treatment methods don’t include ongoing daily ARVs and the funding to develop these to commercialization are vitally needed to ensure those in need of treatment are able to access care and effectively control viral replication, and thus reduce inflammation, in the absence of ARVs. The U.S. Military HIV Research Program (MHRP) is a critical research initiative for the study of therapeutic vaccines, as the main focus of the program is on vaccine research. One of the elite fighters in the war against AIDS, the MHRP conducted the landmark RV144 study which demonstrated thirty-three percent efficacy of a preventative vaccine, ALVAX and AIDSVAX, the only clinical trial to date of a vaccine to demonstrate any efficacy. Another critical program to advance therapeutic vaccine research is the Delaney AIDS Research Enterprise (DARE), an NIH initiative dedicated to cure research.

next day, in school or on-line. They don’t like what they see looking at themselves in the mirror....We say they are invincible. They know they are not. This creates a greater divide between us, and them. Which is why [they] need someone like me to come in and say, I get it. I get it that you know that your body can destruct, and that your spirit can break sometimes. Let me sit with you, and talk about how hard it is to be a teenager. Truth is that both teenagers and adults need someone like Scott Fried. Through his speaking engagements, his books and blog, he passionately teaches us all about the truth, hoping that others would learn from it—the truth that it doesn’t take a life of promiscuity or drugs or recklessness to contract HIV; that all it takes is one time having unsafe sex. “If it happened to me, it can happen to anybody,” Scott Fried says. “Most of all,” he adds, “I need teenagers to know that condoms work. [So] please protect yourselves!” Contact Scott Fried at www.scottfried.com. Check out his blog at www.scottfriedblog.com. Alina Oswald is a writer, photographer, and the author of Journeys Through Darkness: A Biography of AIDS. Contact her at www.alinaoswald.com.

A successful HIV therapeutic vaccine capable of eliciting strong HIV responses could be the coup de grace needed to end HIV in one or more of several ways. Together with host restrictive factors, gene therapy, or other new and novel therapies, therapeutic vaccines may hold potential in accomplishing the ultimate goal of eradicating HIV from the body. Alternatively, therapeutic vaccines may facilitate immune control allowing for a reduction in the use of ARVs that, in turn, would allow for ARV access for a higher number of HIV-positive people. This would reduce the global community viral load along with the number of new HIV infections. Finally, advances in therapeutic vaccine research would likely equate to a gained knowledge for vaccine researchers, possibly helping in the slow and hard-won search for a preventative vaccine for HIV. Jeannie Wraight contributed to this article. Mariel Selbovitz, MPH, serves as the Chair of the Cornell ACTG Community Advisory Board and has authored over thirty abstracts and articles. A former member of ACT UP NY, David Miller is an AIDS treatment activist and current member of the Cornell ACTG CAB. He is on the Community Access Board of OyaGen, one of the subjects of this article. A&U • JULY 2014

JULY 2014 • A&U

Survival Guide

[a portrait by sean black]

[

Louis “Kengi” Carr

Los Angeles, California HIV-positive photographer, activist, and founder of Do Something Saturday and ProjectKengiKat, which provide care for the homeless and those living with HIV. “During my twenty-nine months of homelessness, photography was my voice and in many ways it still is.” Sean Black is an Editor at Large of A&U.

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A&U • JULY 2014

WE KNOW

HIV/AIDS MEDICATION THERAPY But we also know you won’t skip your workout for anything. Welcome to a pharmacy that gets to know you, not just your diagnosis. We’re not just treating HIV patients, we’re getting to know individuals. So no matter the level of support, guidance and confidentiality you prefer, we’re here for you. To learn more, visit HIV.Walgreens.com.

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