A&U December 2014

DECEMBER 2014 • ISSUE 242 • AMERICA’S AIDS MAGAZIN

dick DONATO

FROM BIG BROTHER TO COUPLES THERAPY, THE REALITY STAR EMBRACES AN UNSCRIPTED ROLE AS AIDS ADVOCATE

Straight Talk

STRAIGHT MEN LIVING WITH HIV SPEAK OUT ABOUT CHOICES & CHALLENGES

pop-up activism

A Flash Collective Explores What It Means to Be Undetectable

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 single-tablet regimen and should not be used with other HIV-1 medicines.

STRIBILD does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking STRIBILD. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids.

Never reuse or share needles or other items that have body fluids on them.

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

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

Who should not take STRIBILD? Do not take STRIBILD if you: • Take a medicine that contains: alfuzosin, 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.

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

What are the other possible side effects of STRIBILD?

STRIBILD can cause serious side effects:

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.

• Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain.

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

• Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones.

• Changes in body fat can happen in people taking HIV-1 medicines.

• Changes in your immune system.

Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking STRIBILD. The most common side effects of STRIBILD include nausea and diarrhea.

Tell your healthcare provider if you have any side effects that bother you or don’t go away.

What should I tell my healthcare provider before taking STRIBILD? • All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, bone, or liver problems, including hepatitis virus infection.

• All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking STRIBILD without first talking with your healthcare provider.

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

• If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD. • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in STRIBILD can pass into breast milk, and it is not known if this can harm the baby.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

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

STRIBILD is a 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 it’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.

What is 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.

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

• Do not stop taking STRIBILD without first talking to your healthcare provider • If you stop taking STRIBILD, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking STRIBILD Who should not take STRIBILD? Do not take STRIBILD if you also take a medicine that contains: • adefovir (Hepsera®) • alfuzosin hydrochloride (Uroxatral®) • 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 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. STBC0096 10/14

WWW.UNTIL.ORG

R aising F und s A n d Awar ene ss Fo r H I V /AI D S S ince 1993

1 for $15 3 for $40

The More You Buy the More You Help Our Orphan Bracelets are handcrafted by South African women living with HIV/AIDS using (lead free) copper, brass and aluminum wire. All proceeds go towards helping mothers and children in South Africa whose lives have been severely impacted by HIV/AIDS. Your purchase provides employment to the mothers, and nourishment and care to the HIV/AIDS orphans in South Africa

Be Part of the Solution ... Until There’s A Cure 560 Mountain Hom e R oad | R e dwood C ity, C A 94062 US

c o n t e n t s December 2014

42 Cover Dick Donato Talks to A&U’s Dann Dulin About Learning He Was HIV-Positive on Big Brother and Being Forced Off the Show, and How He Turned His Appearance on Last Season’s Couples Therapy into a Platform for AIDS Awareness

Departments

Features 26 Alternate Endings Visual AIDS Marks Day With(out) Art with a New Series of Short Films 32 Gallery Artist Eric Rhein Charts the Course of His Life 36 Dance Teachers A Baton Rouge Dance Company Choreographs AIDS Awareness Steps that Everyone Can Do

6

Frontdesk

8

Mailbox

9

NewsBreak

18

Ruby’s Rap

viewfinder 16

Brave New World

22

Just*in Time

lifeguide

38 Straight Talk Heterosexual Men Living with HIV/ AIDS Speak Out About the Need for Services & Support

50

Treatment Horizons

52

Destination: Cure

54

Hep Talk

48 Undetectable, Not Invisible A Flash Collective Uses Art as a Political Intervention

56

The Culture of AIDS

60

Lifelines

64

Survival Guide

24 Poetry cover by Sean Black

A&U Frontdesk

Tomorrow People

D

ecember 1 marks the twenty-sixth anniversary of World AIDS Day and the twenty-fifth anniversary of Day With(out) Art. As much as these commemorative days honor those we have lost in the fight, they also shine a spotlight on the present moment.

What will we do today to secure access to lifesaving treatments, to destigmatize HIV/AIDS, and to dismantle the structural poverty, racism, homophobia, and gender inequity that help create an environment of risk? What will we do today to nurture our community, face to face (or, in this age of social media, avatar to avatar)? What will we do today to create tomorrow?

The creative aspect of this labor of love we call the fight against AIDS resonates with me, especially. As an artist and an art lover, I know that painting and photography and sculpture can be a life-affirming force. Art signifies the empty space that comes before brush touches canvas, or before hands touch clay. No matter what the art is about, it reminds us that out of nothing we can build anything and everything.

As a witness to the devastation that AIDS caused across the arts communities since the early days of the epidemic, I know the loss is incalcuable. That’s one of the reasons I started A&U magazine—to create an archive of artists and writers responding to AIDS. It seemed more like the end of something than a beginning.

As the years went by, our mission expanded—we became an inventory of what had happened but also an inventory of where we were and where we needed to be.

As a national day of action and mourning, Day With(out) Art perfectly captures this simultaneous gesture of looking back to look ahead. Created by Visual AIDS, it champions the momentum that comes from memory. Through art, we can enter a space of expression that travels through time. A painting by Frank Moore, an iconic print by Keith Haring, or a photo by Mark Morrisroe can instantly merge 1989 and 2014 faster than a Lamborghini. These artists, and many more who are still with us, created dialogues and actions related to

A M E R I C A’ S A I D S M A G A Z I N E issue 242 vol. 23 no. 12 December 2014 editorial offices: (518) 426-9010 fax: (518) 436-5354

HIV/AIDS in their day. And, almost like magic, the work still creates dialogues and actions today­—with every new viewer.

That’s why we always need to remember to express ourselves now, even if we think that no one is listening. This month’s cover story interview features someone who never bites his tongue— Dick Donato, or Evel Dick, as he has nicknamed himself. As Senior Editor Dann Dulin found out, Donato is using his HIV-positive diagnosis (which he disclosed to the public on the most recent season of Couples Therapy) to educate, no holds barred: “Look, I’m an open, straightforward, everything-on-the-table kind of guy.

This is one of the reasons why I wanted to go public. HIV is a...disease....This is not a gay disease; it’s not a straight disease; it’s just a fucking disease!”

Admittedly, not all of the voices we’ve included in this issue are as ribald as Dick’s, but that doesn’t mean they are any less powerful. In Gallery, Eric Rhein charts his evolution as an artist living with HIV, drawing connections between then and now, between the ethereal and the earthy, through lyrical and often quiet images. And, in The Culture of AIDS, documentary filmmaker Andrew Jenks brings together three young individuals living with HIV in It’s Not Over, which beautifully melds the urgency of addressing the crisis and the optimism that comes with youth. Visual AIDS, to commemorate Day With(out) Art, launched “Alternate Endings,” a program that commissioned original short videos about how the epidemic might end differently than what has been scripted by society. Some are raucous and angry and some are funny, and some are both at the same time.

All the voices in this issue circle back to the impulse to create—create in the midst of death and destruction—and we need to embrace that impulse. It’s how we go back to the future. It’s how we create tomorrow.

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

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

2015

JAN 30th FEB 1st

POSTCA R DS f rom th e E DGE

hosted by Luhring Augustine A BENEFIT FOR VISUAL AIDS

January 30-February 1, 2015

OVER 1500 POSTCARD-SIZE ARTWORKS

BY ESTABLISHED AND EMERGING ARTISTS

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

BENEFIT SALE 2015

Saturday January 31 from 10 – 6 $85 each. Buy 4 & get the 5th as our Thank You. Sunday February 1 from 12 – 4 $85 each. Buy 2 & get the 3rd as our Thank You. Benefit Sale is first-come, first-served. $5 suggested admission. Works are signed on the back and displayed anonymously. Artist’s name revealed only after purchase. Cash, check or credit card (MC VISA AMEX) accepted.

PREVIEW PARTY 2015 Friday January 30 from 6 – 8

$50 admission includes one raffle ticket.

Sneak Peek the only opportunity to see the entire exhibition. No sales.

Silent Auction of small works and VIP access.

Raffle winner selects the first postcard.

More details at visualAIDS.org

526 W 26th Street #510 New York NY 10001 212-627-9855 info@VisualAIDS.org

ART. AIDS. ACTION. Your support makes change possible.

A&U Mailbox

“Patrik-Ian Polk also cares about AIDS. He said, ‘Sexual health is a huge issue for gay black men in the twenty-first century.With HIV rates continuing to be among the worst in the world our community needs to be taught the simple information that can keep us healthy and alive.’”

I agree with the statement in the beginning of the article that some people consider Patrik-Ian Polk to be the “Father of Black Gay Cinema” [cover story, “Knockout,” by Sean Black, October 2014]. He has created some memorable films and characters. The Skinny is an outstanding film and the TV show Noah’s Arc was just wonderful. It is good to see gay African-American men come into the forefront of filmmaking. Patrik-Ian Polk also cares about AIDS. He said, “Sexual health is a huge issue for gay black men in the twenty-first century. With HIV rates continuing to be among the worst in the world our community needs to be taught the simple information that can keep us healthy and alive.” I just found your interview to be very informative.

I wish great success for Patrik’s new film, Blackbird.

—Lane Hansen-Smiley Baton Rouge, Louisiana We need more creative people like Patrik-Ian Polk in the movie industry. For too many decades African Americans were delegated to minor roles, if not just plain invisible.

We were lucky to get a substantial role in a movie. Now things have changed and black Americans are now producing, directing and working in every aspect of the movie industry.

And the great thing is that gay black men are

8

Can We Talk?

Thank you for that wonderful tribute to the late Joan Rivers [October 2014]. She was one of my idols and I can’t believe that she died the way she did. It is so sad what happened to her. You are so right that she was one of the earliest celebrities who came to the assistance of people living with HIV/AIDS. I just love what she said in her own inimitable way: “Maybe I have had a little something to do with making people aware of it. By making people aware of it, maybe a little more money has gone into research. Maybe by a little more money going into research, it is prolonging lives. I helped make America more aware, that’s all.” Joan, you really did make us all aware of AIDS and you made a difference.

Thanks for what you did in helping us all.

—Mary Samantha-Tinker Atlantic City, New Jersey

Save the Children

children of Romania who are infected with HIV [“Winter Into Spring,” by Chael Needle, October 2014]. It is just criminal what the communist government did to the Roma people—also known as gypsies. The sad thing is that the Roma people not only in Romania but throughout Eastern Europe are persecuted and picked on. This has been going on for many decades, even the Nazis used to exterminate them. The Jacodu Children’s Project is the only hope at this point to help these tragic children. I have nothing but praise for the Jowetts, who have taken the challenge and are committed to saving the children of Romania. Unfortunately the present government in Romania does not have the money or wherewithal to do much about these children. It is a very sad situation in Romania but at least there is a glimmer of hope.

—Sandra Willingham Darien, Connecticut

Send e-mail to: mailbox@aumag.org Send letters to: Mailbox, A&U, 25 Monroe Street, Suite 205, Albany, NY 12210 Or click on “Mailbox” on our Web site’s home page: www.aumag.org Tweet Us @au_magazine Facebook: http://on.fb.me/AUFANPAGE All correspondence requires name, address, and daytime phone number for confirmation. Letters may be edited for length and clarity.

It is inspiring your story about the poor A&U • DECEMBER 2014

photo by Duane Cramer

Cinema Verité

making movies about gay men and lesbians.

For too long gay people were also invisible on the screen, only shown as in a comic way, to be laughed at by mainstream America. Thank God that I am alive to see the changes in the movie industry. I give credit to Patrik-Ian Polk for what he has accomplished.

—Wayne Farrington Atlanta, Georgia

NEWSBREAK Love Responsibly

A Friend In Deed Who’s Afraid of Virginia Woolf, The Graduate, Silkwood, Working Girl, The Birdcage, Angels in America—the films of Mike Nichols alone are enough to fill a Netflix queue with hours and hours of binge-worthy viewing. His Broadway directorial efforts match his Hollywood output—The Odd Couple, Plaza Suite, The Prisoner of Second Avenue, The Gin Game, a revival of Death of a Salesman, The Real Thing, Spamalot. Oh, and he produced Annie. And did you forget that he was part of a groundbreaking comedy team with Elaine DECEMBER 2014 • A&U

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photo by Bridget Seigfried

Subaru Of America, Inc., is marking its twentieth anniversary of support for the fight against AIDS by wearing its heart on its sleeve—or, in this case, on its 2015 Legacy. The company teamed up with Mondo Guerra [A&U, January 2013] to “wrap” one of its latest models in the fashion designer’s signature style. The one-of-a-kind car, fueled by Subaru’s Love Responsibly campaign, will make its debut at a private reception at The Annex, a pop-up space in the Wynwood Miami Design District, on December 1, which is the first day of Art Basel Miami as well as World AIDS Day. As a social action campaign, Love Responsibly is driven by its mission: to energize one and all, including Subaru retailers, to donate their time, energy, or other resources in their local communities and encourage dialogue about expanding the fight against AIDS; and to enlist participants in Dining Out For Life hosted by Subaru, an annual fundraiser benefitting AIDS service organizations in sixty cities across North America.

Restaurants that participate donate a percentage of the day’s food sales, which, in turn, help to fund local care, prevention, education, testing, counseling and other essential HIV/AIDS services. Since they have partnered, Subaru and Dining Out For Life have helped raise over $30 million.

Subaru selected Guerra for his ability to thread social responsibility with his talent and creativity. On Project Runway’s Season 8, Guerra disclosed his HIV-positive status when asked by one of the reality show’s judges about the meaning behind his use of the plus sign as part of his design.

Noted Guerra in a prepared release: “I’m extremely honored to contribute to the Love Responsibly campaign because it’s centered on corporate, social and individual responsibility. I’m inspired by the storytelling; it’s empowering and heartfelt, and to tell that story through a creative expression that becomes the exterior of an automobile—well that’s like creating the ultimate On World AIDS Day, artist and activist Mondo Guerra will street art.” reveal his design-wrapped Subaru 2015 Legacy in Miami.

Subaru encourages those committed to the cause to participate in World AIDS Day events, and other events such as Dining Out For Life; to know their status and learn about HIV/AIDS; and to spread the word via social media with #loveresponsibly.

For more information, visit www.diningoutforlife.com. Follow Dining Out For Life on Twitter: @DineOut4Life.

NewsBreak

May? After you marvel at the glittering gems he brought to our lives, the Grammy, Oscar, Tonys, and Emmys, among other awards and recognitions for his work, seem like insufficient praise.

When he died last month at eighty-three, we lost a great individual.

The sensitivity and the creativity that we saw onscreen, or saw onstage, or heard on our record players, extended into his other efforts to make the world a better place. In 1991, he helped to cofound Friends In Deed, a New York-based non-profit that provides social support to individuals living with HIV/AIDS and other illnesses. With Cynthia O’Neal [A&U, January 2000], Nichols, who appeared on our cover in December 1998, responded to the need for emotional and spiritual support in the lives of those facing life-altering illnesses and conditions, like HIV and AIDS. Speaking about Friends In Deed, Nichols told A&U’s Dale Reynolds: “Over and over I hear that people’s lives didn’t begin until they tested positive...the large part of that is thinking of others. With life-threatening diseases, you try to get outside of the well of panic [and] the only saving grace is the thought of others, as in everything. That’s why we turn to others for comfort; to be connected. There’s a basic rule in stage acting: when overwhelmingly nervous, look directly at your partner, it’s the only way out.”

Friends In Deed is now over two decades strong and all services remain free of charge. The organization has a multitude of services, including the Big Group, which provides a safe space to share and listen for those experiencing difficult health-related circumstances; one-on-one services; crisis counseling; Integrative Wellness Thursdays; bodywork services; yoga and meditation; weekly workshops and seminars on everything from dialoguing with your doctor to becoming self-reflective about the role of food in wellness; and an empowerment workshop called The Mastery. Friends In Deed also offers a HIV Long-Term Survivors Discussion Group, which helps individuals living with HIV/AIDS face the challenges of living long with the virus with support.

Nichols is survived by his wife, Diane Sawyer, his children and grandchildren, and a brother.

If you would like to help Friends In Deed help people to transform their own lives and the lives of others, log on to: www.friendsindeed.org.

Community Poem Nothing unites a community like the power of the word—composed, spoken, resonant.

Project I Design knows this well, but the patient-awareness campaign didn’t enlist a single poet to speak out, they enlisted the HIV community from across the country to collaborate with each other to create a single poem about how their HIV diagnosis makes them feel. Hundreds of individuals living with HIV/AIDS added their voice to a verse, working to fill in the blanks by selecting from a pool of fifty-two words, Mad-Libs style. Participants were enlisted at events throughout the year by I Design spokespeople Project Runway’s Mondo Guerra [A&U, January 2013], music industry insider and HIV advocate Maria Davis [A&U, September 2014] and renowned HIV activist and photographer Duane Cramer [A&U, May 2013], all of whom are trailblazers in artistic self-expression. Commonly used words—words like “inspire,” “optimism,” and “future”—formed the basis of the final piece. Some participants recited their verses and the voices were collated in a mash-up video titled “My Voice.”

The idea spins-off from Project I Design’s goals, which are to encourage individuals living with HIV/AIDS and on treatment to find their own voice when engaging in dialogues with their physicians. Project I Design, created by Merck, provides patient-centered tools that allow individuals to reflect on treatment goals and treatment options, pinpoint lifestyle choices, catalogue side effects, symptoms and ailments, and family medical history, and find the right therapy that works for them. The project aims for individuals to approach health and wellness from the standpoint of their own particular needs and desires.

On December 1, to commemorate World AIDS Day, now twenty-six-years strong, Project I Design will reveal this first-ever mash-up video and poem created by the HIV community, for the HIV community.

For more information about Project I Design and to see the video and the written poem, log on to: www.projectidesign.com.

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A&U • DECEMBER 2014

One Bad Day sometimes a fight is just a fight and sometimes it’s not

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itive for fifteen years; that I’ve been hospitalized about a half a dozen times; and that I have “almost died” more than once. So I have very little patience for lamenting over the little things. But of course, our break-up has nothing to do with my status; or the fact that we’ve only had sex five times in five months— which has prevented us from forming a strong enough physical and emotional bond that could withstand hardships, insecurities, miscommunications, arguments, and one bad day….

So the black crows are circling the purple sky and the moon is warning us to go home, but we are stubborn and in love, so we decide to continue with our plans.

Dinner is quiet: lots of clinking forks. The movie is some high-minded, queer-centric documentary about James Broughton: a progenitor of the beat poets. And it’s filled with a bunch of old men, and no black people. And afterwards, we are walking home: holding hands; discussing the film….

We were so close. Three more blocks and we would have made it.

And then we had the fight. It doesn’t matter what it was about or how it began, because the fault was already in our stars. Maybe he said something

about me being black, or maybe I said something about him being old, but by that time both of us were already too far gone, and the universe was already unraveling at the seams, and the moon was already whispering, “I told you so.”

It was the kind of fight that feels like it’s having you, rather than you having it.

Later we decided it was a “miscommunication.” And it was. But because we haven’t had sex in more than five weeks—and because he went to the dentist this week and so we haven’t kissed in almost seven days—and because we’ve never had another magical bareback moment like the one we had that night we were being so brave—and because a relationship can’t survive on just ONE magical moment—and because after so long all of that distance just seems unbreachable…the next day over donuts we broke up.

But it had nothing to do with the HIV. Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Nonsense can be found at www.justwords.tumblr.com.

A&U • DECEMBER 2014

photo by Yuska Lutfi Tuanakotta

S

o we broke up—“we” being my boyfriend and I. We broke up just a few minutes ago, and it had nothing to do with sex: Nothing to do with HIV or serodiscordancy or condoms or PrEP or PEP or any of the indissoluble life-altering conflicts of blood, bed sheets, and semen—or at least that’s what we are telling ourselves. We are telling ourselves that we are disentangling our love, lives, and futures over an “inability to communicate”—or at least that’s the reason he gave me. And I promise I’m not bitter about it.

In fact, I broke up with him….No, really, I did!

But of course that’s what the bitter one always says.

I assume there were always signs. Sure he was HIV-negative and I was HIV-positive and we could never get the intimacy right, or have sex without fear, or trust the new science that said we could not hurt each other… but I’m sure that that had nothing to do with it. I repeat we did not break up because of the HIV—at least that’s what we are telling ourselves.

The truth is that last night we had a fight—a stupid fight—our first and last fight.

This is how it began. It was date night. We had plans to have dinner and see a movie. But he was in a bad mood because after two years of not working, he was told (yet again) that he did not get the job he was applying for. And he was sad. But me being the kind of girl that I am, I made it all about me. And I told my normally chipper well-spirited sweetheart, who needed my support, that he was being “aggressive,” “hardedged,” and “not at his best.”

I can be selfish sometimes, and I’m not the softest place to fall.

HIV has obviously made me compassionate in a million beautiful ways, but it has also made me far less so in others. I often forget that people just have bad days. It may have something to do with the fact that I have been HIV-pos-

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EITAN BARON

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By day, he’s manager for a surveillance system company and by night, he studies for a teaching degree. Eitan is currently interning part-time in the classroom. At nineteen, while serving in the IDF (Israel Defense Forces—a requirement for both men and women), Eitan came out. It’s interesting to note that Israel was the first country to accept gays in the military way back in 1993. Americans can be so infantile and ignorant! Like Joan Rivers so growlingly used to say, “Oh, grow up!”

After meeting my first gay Israeli I wanted to find out more about his views on the epidemic. I invite him to the hotel’s daily afternoon “Happy Hour.” We partake of the complimentary aperitifs and sit in their glass enclosed vine-sprawled airy terrace, which is surrounded by foliage, a pond, and cascading water. There’s also a free ten-minute massage. Later, masseur Audrey Abitbol worked her magic on me and I hired her for a two-hour stint. This woman has incredible healing hands and a tranquil aura, a gracious personality, and eye-catching looks, as well.

Ruby Comer: These pillowy sink-into-chairs are so comfy. Eitan, when did you first hear

about HIV/AIDS? Eitan Baron: I was quite young. It was when Freddie Mercury died. Then later, when Magic Johnson spoke out and retired from the NBA. The epidemic really impacted me in 2000. For over a week the whole nation followed the news about the slow death of beloved Israeli singer Ofra Haza, who was HIV-positive. It was only after her death that it was officially announced that she had died of the disease. Rumors about her illness had run around like crazy while she was struggling for her life. It was a complete shocker! Everyone wondered how a woman with such a pure soul like Haza could have AIDS. It seems she was infected by a blood transfusion. After her death, a leading doctor criticized Haza for hiding the disease and was quoted saying, “She died of shame.”

Unfortunately I’m not familiar with her.

You’ve piqued my interest though. Were you taught about HIV/AIDS in school?

Not really. HIV/AIDS awareness was not a high priority when I was in school. We were taught to wear a condom, but only to prevent unwanted pregnancy, not HIV. Hmm….What’s your take on HIV in Israel?

A&U • DECEMBER 2014

Ruby illustration by Davidd Batalon; Baron photos by Ruby Comer

F

reedom is not something you are given, but something you have to take”—Méret Oppenheim, Swiss Surrealist Artist and Photographer.

As I read this at a recent exhibit in the Haifa Museum of Art, a surge of electricity rushed through my svelte body.

I had already taken Méret’s advice! I seized the opportunity of an invite from the Israeli Ministry of Tourism and hopped on a flight to Israel. The history of the State of Israel is astonishing and is well documented in the award-winning 1960 film, Exodus.

Hands-down, the place to stay in Haifa is the extraordinary and regal, Bay Club, a boutique hotel—small enough to be intimate, large enough to provide expertise service. (Nikolay Pertzel at the front desk is super-thoughtful.) The 1912 landmark building, an old police station, is located next to a park and just steps away from the Port of Haifa. The pristine grounds are adorned with flowing trees, vivid flowers, and a calming fountain. Vibrant jade-green doors to the guest rooms complement the aquamarine-blue furnishings and tiled walls.

My homey room is spacious, and careful attention has been given to design and accoutrements. My only gripe is that there is no tissue dispenser! The unbelievable view from my large balcony is a postcard of Haifa—it’s hills, edifices, and greenery; think San Francisco.

I spend my first day in Haifa at the Technion Institute of Technology, a center for HIV/AIDS research, where they are pioneering crystallographic work to advance HIV treatments. One of the folks on my tour is Eitan Baron, thirty-one, who’s visiting from Tel Aviv.

I learn that after receiving a B.A. in communications and a Master’s degree in Diplomacy, Eitan [pronounced “8-tan”] felt a calling to be an English teacher.

Bay Club in Haifa, Israel I understand that there is an increasing amount of new HIV cases in Israel every year.

hotel photo courtesy bay club; haifa photo courtesy Israel Ministry of Tourism

That sounds familiar. [I painfully force a smirk.] What is HIV prevention like here?

No one can say that awareness isn’t high.

On Israel’s dating sites they publish various prevention campaigns and volunteers hand out free condoms in clubs. Outside the clubs, a lot of the times, there are free HIV testing points. [He pauses to think then sips his white wine.] Yes, a lot is being done and I think that most gays aren’t ignorant about HIV. It’s each individual’s responsibility to stay safe.

Speaking of testing, when did you first get tested?

I was twenty-two and my boyfriend and I decided after we had been together for a few months to get tested. We went to the Israel AIDS Task Force headquarters to get the quick test and a half hour later we were both pronounced [non-reactive]. It was a big relief because frankly, even though I didn’t do anything unsafe, I was still very stressed. All kinds of worst-case scenarios went through my mind.

It does create anxiety. Do you always play safe?

You can be honest!

Yes…I… do. Sex shouldn’t be a death sentence and as long as I know that, I don’t see any reason to put myself at risk. [He takes a beat then presents an energetic boyish grin.]

Bravo! How do you keep safe? What’s your dating process like when it comes to HIV? [A waiter approaches and asks if we need anything before closing.]

Ya know, Ruby, when I’m on a date DECEMBER 2014 • A&U

with a guy I’ll never directly ask about his HIV status. But before sleeping with him I may ask, “When were you last tested?” If our relationship becomes more serious, then we’d probably both be tested. It’s peace of mind.

Yesterday you commented that every summer you would visit your grandparents in Montreal and from there you traveled around the United States. In one sentence, what strikes you as the biggest difference between America and Israel?

One of the main differences I always notice between the U.S. and Israel is the mentality of the people. I feel that the Americans are very worried about being rude and politically correct, while Israelis have what we call “chutzpah,” which makes us very straightforward. I don’t know what’s considered better, but I like that Israelis are not afraid to speak their mind.

I prefer that also. [I gently sip my iced green tea.] Fortunately, Eitan, I have no experience with rockets being fired at me.…What is that like?!

I studied in Sderot between 2005–2008, a period of time when there were hardly any

safe zones. I remember my landlord telling me not to be alarmed when the siren goes off. But if I hear the sound of a whistle, than that means the rockets are right above me— and I’m screwed. I can tell you that I heard the whistle sound a few times and it was scary as hell. But to be honest, you get used to the sirens pretty quickly. It goes off, you hide and count fifteen seconds, hear the boom, and continue on with your life. Usually this happened once or twice a day. Of course, this is not normal and no one should have to live like that, but the people down South have been living like this for the past fourteen years. It’s absolutely mad!

The last round of violence in Gaza in July and August was different. Living in Tel Aviv, I had a minute and a half to find shelter once the sirens went off.

The magnificent Iron Dome protected us, which intercepted rockets that were aimed at random civilians.

I’m so sorry—and I hope I never need to go through that torture [furiously shaking my head to and fro, in disgust]. Any other remarks, Eitan, before I try the hotel’s free introduction massage?

Many people don’t realize how ashamed and lonely HIV-positive people feel because of the stigma attached to the illness. Modern medicine can deal with HIV, but we should all make the effort to refrain from blaming people. [Eitan tilts his head, briefly looks up at one of the romantic lit lanterns hanging above us, and gleefully exclaims] As an educator, I’ll have the power to promote important values such as tolerance. It’s exciting to think that I’ll be educating Israel’s future generation!

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.

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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.

Justin, I don’t know if this is okay to ask you but I want to ask you anyway. We are friends on Facebook but we’ve never talked. I know you add people who you don’t necessarily know but at least know of your work, and that is all good with me.

I’m even friends with your fan page and the Justin’s HIV Journal page, so I feel like I know you already.

Anyways, okay, have you heard of the new HIV prevention method that is a shot and shows a 100-percent efficacy rate? With all the things you’ve accomplished do you think you would prefer to be HIV-negative knowing that you may not have been so successful if you were negative? Also would you take an HIV cure?

—Poz Swimfan Umm, WOW, these are all great questions and all are very loaded.

But let’s take one question at a time.

If any of my readers don’t know, earlier this year a new HIV vaccination method now in clinical trials with macaques has thus far proven to be 100-percent effective in preventing transmission of a hybrid of simian and human immunodeficiency viruses. This proof-of-concept study is being led by researchers at the Aaron Diamond AIDS Research Center at Rockefeller University

22

in New York. If this prevention method is approved it would only have to be taken about three times a year vs. the currently approved pre-exposure prophylaxis (PrEP) pill, which has to be taken almost every day; is ninety-two-percent effective (in preventing the transmission of HIV), though some say ninety-nine percent; and is recommended with the use of condoms.

With this new method, the shot lasted about five to ten weeks on average in the monkeys who were given the prevention candidate.

My opinion: It’s one step closer to a cure, at least hopefully. The more and more we come up with vaccines for disease, the more and more there is a chance for a cure.

I truly believe that one day there will be a cure; and yes, sometimes preventative vaccines come before a therapeutic cure.

Now, onto your second question.

A really good friend said to me that I had never looked better in my life before I was diagnosed with HIV. HIV made me change my mentality on how to live my life as it’s very hard to face one’s self in the mirror when one only sees pain, well I have to do that so that I can strive to live for a better life. I do have to attribute HIV with helping me refocus on what was and is important to me, which is my family, education, and health.

HIV has, I will admit, given me a degree of success, but that only came after tapping the strength I had in myself to overcome HIV and other personal demons. I used to do some things that I would normally not do to get away from the pain I would feel. I then met someone who helped me through and had me believe in myself again and what I could do to help people.

My children’s book helps children deal with their own disclosure, my column in a Baltimore newspaper helps the local community, and this advice column helps others around the world with questions about HIV/AIDS. If it weren’t for HIV, I wouldn’t be able to help others as much as I have. But who knows—if it hadn’t been HIV it might have been something else.

Most of us believe in some sort of higher power, and some of us are atheist. I personally believe in a higher power and all I know is that my higher power will get me through, whether the end is near or far. I take comfort in leaving my mark here on earth, being a husband, father, and trying to be the best person I can be. So, as you can see, it’s really not about my success but contributing to the success and empowerment of others that I take joy in.

Would I take the cure?

I don’t know. ◊ A&U A&U• DECEMBER • OCTOBER 2014

H IV + Owned Si nce 1998

POETRY

PASSING BY “It is not just that we are not what we were, rather it is we are not.”

—W. Wayne Karr I’m racing up the marble steps at dusk because I’m a few minutes late, meeting Brian for coffee. He is laughing a bit, still shaking his head, astonished, when I bend to kiss him hello. A man he hasn’t seen in months has just said to him “I thought you were dead.”

We sit outside in the plaza, watching strangers. I tell him that last week a friend said I remind him of Wade, maybe the turn of my head or the reach and cup of my hand hugging him hello, he wasn’t sure except that I can only remember Wade sick and Brian looks at me like he has forgotten Wade is dead so I lace my fingers across his hand, pull open his palm, and rest my cheek there. I say I think it was ’93, same summer as Steven, and he says Steven died in ’94.

Though it is summer in Los Angeles, the sky breaks open and rain begins to fall.

We watch as strangers around us walk faster on their way to a film or dinner or the record store. Puddles on the marble steps turn slippery in the sudden rain as we move to stand under an awning, holding hands.

We watch water breaking the skin of water, the surfaces of each of us exactly that fragile.

We walk with careful steps. We hear the rain on our skin.

—Keiko Lane

A queer and AIDS activist for twenty-five years, Keiko Lane lives in Berkeley, California, where she maintains a private psychotherapy practice and teaches graduate and post-graduate psychology and cultural studies. In addition to her literary writing which has been published in journals and anthologies including Calyx, Americas Review, Here Come the Brides, The Feminist Porn Book, and Queering Sexual Violence, she writes essays about the intersections of queer culture, oppression resistance, and liberation psychology.

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A&U • DECEMBER 2014

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ANSWERS HIV Answers gives you the information you want, privately, right on your phone.

Get started online at

Download the app at

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HIVanswers.com/app Answers

AE

Alternate Endings Visual AIDS marks the twenty-fifth anniversary of Day With(out) Art

by Alina Oswald

I

f art were a person, she—yes, she— would be a historian, documenting not only our desires and fantasies, but also the part of history usually left untold.

And when it comes to documenting the history of AIDS, maybe there’s no better historian than art.

In 1989 Visual AIDS launched the Day With(out) Art programming in response to the epidemic decimating the artistic community, and also as a way to commemorate the lives of artists lost to HIV/AIDS. This year Visual AIDS marks the twenty-fifth anniversary of Day With(out) Art with a screening of original short videos about the ongoing epidemic. The program, called “Alternate Endings,” brings together seven artists— including filmmaker Tom Kalin, performer Derek Jackson, and My Barbarian collective—to create new and fresh video work in response to old and new issues surrounding HIV/AIDS. The title, “Alternate Endings,” has its source in screenwriting and Hollywood film, and refers to those different endings that are scripted, and sometimes shot, but never used. In the case of Day With(out) Art, it is meant to suggest the possibilities of someone living with HIV/ AIDS longer and in greater health, in contrast to twenty-five years ago when people living with the virus had a much shorter lifespan. The title also suggests we can now flip the script and fight for an ending of our own design.

I recently caught up with filmmaker Tom Kalin, an ACT UP member, a member of the Gran Fury collective, and prominent award-winning artist, who was tapped by Visual AIDS to help organize

26

the film project; and with contributor Derek Jackson, award-winning artist and performer in a band called Hi Tiger (and Visual AIDS archive member for the past ten years), to talk about Alternate Endings, and the twenty-fifth anniversary of Day With(out) Art.

reign, which was nice. [The video that I put together for this project] is very simple, very minimal, [a sample of ] an intimate performance that we did in July of a song that I liked and have been singing for four years. It’s called “The Village,” by New Order.

Alina Oswald: Could you explain your collaboration with Visual AIDS on this project?

Tom Kalin: Initially we all put together a long list of artists that we thought might be interesting to consult.

There was an attempt to mix generations, in terms of AIDS and experience. The idea was to curate a diverse group of people, not only filmmakers, but also photographers, and visual artists. There are artists whom I’ve known for years, and others I have never met.

Ted Kerr [the former Programs Manager of Visual AIDS] created a visual brief, and a text brief meant to inspire thought [offering] a look at AIDS from the early eighties until present day, [through] images from newspaper, popular culture or activist images, a collection of themes and ideas talking about the global pandemic, and looking at the issues of AIDS and aging, AIDS and gender, and women or transgender populations.

Derek Jackson: Beyond the initial invitation, and now in these final stages of technical post-production and formatting issues, they gave me pretty free

You have a film screening at the event, Tom. What is it about?

TK: Over the years I’ve made a bunch

A&U • DECEMBER 2014

Opposite page: Derek Jackson, Future Faggotry Clockwise from left: Lyle Ashton Harris, 2014, Selections from the Ektachrome Archive 1986-1996; promo image created from Tom Kalin, 2014, HD Video commissioned for Visual AIDS’ Day With(out) Art Alternate Endings program; Tom Kalin, 2014, Ashes of movies that deal with AIDS. This is the most different from anything I’ve done [so far]. It’s quite reflective, ethereal in a way. I’m using high-resolution imagery from the natural world, as well as from the urban world, photographed using time lapse, [to suggest] the passage of time in relationship to AIDS, interweaving personal moments with the public moments.

How about Hi Tiger, Derek? Why did you choose to recreate the song, “The Village”?

DJ: Hi Tiger is an art punk band. [Its] name comes from a song called “Teach Me Tiger,” by April Stevens, a really breathy kind of a love song.

I grew up on the border of Mexico, where British bands were actually popular with Mexicans on the border. You wouldn’t think so, but they identified with this British irony, outsider status. And then Hi Tiger came away to reconnect with that.

In terms of HIV/AIDS...new wave, the eighties...this was when it all went down.

So that’s why “The Village” is a very sad [song], it’s like I’m singing to ghosts.

DECEMBER 2014 • A&U

Tom, you are an award-winning, prominent artist who’s been vocal about HIV/AIDS-related issues since the very beginning of the epidemic. You continue doing so, when you could have moved on to more...popular topics. Why? TK: It’s just my nature. I was an interdisciplinary in art major. My own career has traveled in different forms. The AIDS crisis is still a global pandemic that’s taking the lives of people all over the world.

I think it’s really in my nature to believe in the possibility of social change, and, while in the middle of my career—and my life—I find it stimulating to meet emerging artists through a project like this, and to use whatever exposure I have in my own career to help them. Because artists who were critics of my work, when I moved to New York in the eighties, were incredibly important to me.

Derek, you evolved as an artist, from writer to visual artist, and now a performer in your own band. You also raise AIDS awareness.

Can you explain this artistic evolution?

DJ: It’s about the generative process.

I observe the experiences, stories, and I play with forms of documenting them.

Certainly, I love curating exhibitions, but with a band, working with music videos [and] live performances, it feels like a natural evolution.

[And I raise AIDS awareness] because of the way [AIDS] has affected my life, and the lives of people around me. It’s something that I struggle with.

How do you see Day With(out) Art today compared to the one a quarter-century ago?

TK: The condition of the AIDS crisis is in a different state now than it was twenty-five years ago. There are now life-saving antiretroviral drugs to fight the progression of AIDS. There are a lot of changes with HIV prevention, most significant the introduction of a [PrEP] drug like Truvada, as new ways to deal with the issue of HIV transmission. [And yet,] we still don’t have an effective vaccine. Because of [its] history, Day With(out) Art is about reflecting on what has happened before and looking at what it’s going to come.

DJ: Twenty-five years ago I was a junior continued on page 60

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

Just the

one

for me

COMPLERA is a complete HIV-1 treatment in only 1 pill a day.

Ask your healthcare provider if COMPLERA may be the one for you.

Pill shown is not actual size.

COMPLERA does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids.

Never reuse or share needles or other items that have body fluids on them.

It is not known if COMPLERA is safe and effective in children under 18 years old.

IMPORTANT SAFETY INFORMATION What is the most important information I should know about COMPLERA? COMPLERA can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.

• Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain.

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

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

Who should not take COMPLERA? Do not take COMPLERA if you: • Take a medicine that contains: adefovir (Hepsera), lamivudine (EpivirHBV), carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol), oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek), rifampin (Rifater, Rifamate, Rimactane, Rifadin), rifapentine (Priftin), dexlansoprazole (Dexilant), esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), omeprazole (Prilosec, Zegerid), pantoprazole sodium (Protonix), rabeprazole (Aciphex), more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate, or the herbal supplement St. John’s wort.

• Take any other medicines to treat HIV-1 infection, unless recommended by your healthcare provider.

What are the other possible side effects of COMPLERA? Serious side effects of COMPLERA may also include: • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood tests to check your kidneys before starting treatment with COMPLERA. If you have had kidney problems, or take other medicines that may cause kidney problems, your healthcare provider may also check your kidneys during treatment with COMPLERA. • Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: feeling sad or hopeless, feeling anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself.

Changes in liver enzymes: People who have had hepatitis B or C, or who have had changes in their liver function tests in the past may have an increased risk for liver problems while taking COMPLERA. Some people without prior liver disease may also be at risk. Your healthcare provider may do tests to check your liver enzymes before and during treatment with COMPLERA. • Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones.

• Changes in body fat can happen in people taking HIV-1 medicines.

• Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking COMPLERA. •

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

What should I tell my healthcare provider before taking COMPLERA? All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, mental health, bone, or liver problems, including hepatitis virus infection.

• All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking COMPLERA without first talking with your healthcare provider.

• If you take rifabutin (Mycobutin). Talk to your healthcare provider about the right amount of rilpivirine (Edurant) you should take.

• If you take antacids. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA. • If you take stomach acid blockers. Take acid blockers at least 12 hours before or at least 4 hours after you take COMPLERA. Ask your healthcare provider if your acid blocker is okay to take, as some acid blockers should never be taken with COMPLERA. • If you are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking COMPLERA. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in COMPLERA can pass into breast milk, and it is not known if this can harm the baby.

•

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

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

Brief Summary of full Prescribing Information COMPLERA® (kom-PLEH-rah) (emtricitabine 200 mg, rilpivirine 25 mg, tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information.

What is COMPLERA? • COMPLERA is a prescription medicine used as a complete HIV-1 treatment in one pill a day. COMPLERA is for adults who have never taken HIV-1 medicines before and who have no more than 100,000 copies/mL of virus in their blood (this is called ‘viral load’). Complera can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL) and whose healthcare provider determines that they meet certain other requirements.

• COMPLERA is a complete 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: 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), unless you are also taking rifabutin (Mycobutin) COMPLERA is not for use in people who are less than 18 years old.

What are the possible side effects of COMPLERA? COMPLERA may cause the following serious side effects: • See “What is the most important information I should know about COMPLERA?” • 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: – Rifabutin (Mycobutin), a medicine to treat some bacterial infections.

Talk to your healthcare provider about the right amount of rilpivirine (Edurant) you should take.

– Antacid medicines that contain aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA. – Certain medicines to block the acid in your stomach, including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine hydrochloride (Zantac). Take the acid blocker at least 12 hours before or at least 4 hours after you take COMPLERA. Some acid blocking medicines should never be taken with COMPLERA (see “Who should not take COMPLERA?” for a list of these medicines).

– Medicines that can affect how your kidneys work, including acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex), and valganciclovir (Valcyte).

– clarithromycin (Biaxin) – erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone) – fluconazole (Diflucan) – itraconazole (Sporanox) – ketoconazole (Nizoral) – methadone (Dolophine) – posaconazole (Noxafil) – telithromycin (Ketek) – voriconazole (Vfend) Know the medicines you take. Keep a list of all your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. Do not start any new medicines while you are taking COMPLERA without first talking with your healthcare provider.

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: June 2014

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. CPAC0115 08/14

possibilities of

transcendence Multidimensional artist Eric Rhein talks about the impact that HIV/AIDS has had on his life and his work as he preps a mid-career exhibition, “The Course of My Life”

by Sean Black

I

t is important for artist Eric Rhein to communicate the essence of his intricate artwork as precisely as he crafts it. He poetically describes himself in this interview as “one who integrates and draws from the many facets of the physical and mystic worlds: nature, mythology, spiritual states, the act of collecting and recycling, seeing and highlighting beauty were it hadn’t been apparent before.” Diagnosed with HIV in 1987, fifty-three-year-old internationally exhibited Rhein is a founding member of Visual AIDS’ Frank Moore Archive (formerly The Archive Project), the largest registry of works by visual artists with HIV/AIDS. He is best known for his ongoing work Leaves, a collection he began in 1996 to honor the people he knew who died of complications from HIV/AIDS. Evoking those remembered through carefully hand-formed silhouettes of different leaves constructed out of wire.

32

A&U • DECEMBER 2014

A&U Gallery

An installation of eighty-three (out of over 200) Leaves tributes, along with an array of other carefully selected works amassed throughout the artist’s life thus far, will be on view at Johnson & Johnson World Headquarters this year in honor of World AIDS Day. Curated by Heather Cammarata-Seale, “Eric Rhein: The Course of My Life” will provide a glimpse into the artist’s past, a view of his present and a preview of his future. Using photography, paper, found materials, and mixed media to explore and understand humanity’s interconnections and relationships with the natural world, Rhein’s artwork serves as a memoir of his life experience, chronicling his formative years in New York’s Hudson Valley, his childhood summers in the Appalachian Mountains and adulthood on the Lower East Side of Manhattan.

As part of J&J’s Corporate Art Program, the exhibition opens December 1 in New Brunswick, New Jersey and will run through January 31, 2015. The show will be open to the public by appointment Monday through Friday, 9 a.m. to 5 p.m.

The artist is further revealed in our insightful and intimate conversation.

more like a cross-section of artistic development over nearly three decades of my living with HIV. A retrospective would be more comprehensive, starting with butterfly puppets I developed out of silk chiffon stretched over wire, for the George Balanchine ballet, The Magical Child, shortly after my arrival to New York City in 1980, at eighteen. There would be inclusions from bodies of work created both prior to and after my HIV diagnosis, like a series

I call “Hospital Drawings” from my 1994 “Artist In Residency” at Saint Vincent’s Hospital, and a portfolio of nudes.

Could you describe how the Johnson & Johnson exhibition was curated and what pieces of yours will be included in the show and the arrangement (if possible)?

When the curator, Heather Cammarata-Seale, approached me about an exhibition it was through her knowledge

Sean Black: What is it you wish to convey in your work?

Eric Rhein: Since childhood, and heightened through my living with HIV and AIDS, creativity has been vital to my survival as means of communication with multidimensional realms. It’s accompanied times of spiritual expansion, vulnerability, grief, and resilience, cultivating alternative perspectives, and possibilities of transcendence. A drive to share the history of AIDS experienced by me, and my contemporaries that is held in my artwork, gives a sense of purpose.

Is this exhibition a retrospective of your work?

It isn’t actually a retrospective. It is

Opposite page: Arthur—Portrait of a Faerie Man (with butterfly), 2010, silver gelatin print on fiber paper, wood frame, 25 by 21 by 1 1/2 inches Above: Company—Self Portrait, 1999, silver gelatin print on fiber paper, 16 by 20 inches

DECEMBER 2014 • A&U

33

The Gathering

by Eric Rhein (1998)

I

’ve been pushed back from the borders of death, redeemed to life—escorted by the same spirits who comforted me on the precipice of demise.

I’ve been awakened from a turbulent dream, or so it seems; awakened by a prince, with a pharmaceutical kiss.

I had aged prematurely—ravaged through the course of ten years with H.I.V. —When testing positive, my 27 year old body was still that of a boy, fresh from college; then it became that of an old man, leapfrogging adulthood to decay. Now, having been restored to health, I wear a man’s body that I’d lost sight of. It’s strangely unfamiliar.

The spirits of my Kentucky ancestors are with me. Their wisdom, imbibed from simpler life times, resonates in my devotion to autumn leaves I revere as tributes to fallen friends.

My Granny Corinne said the autumn leaves wear brilliant colors like their best Sunday school dresses to remind us of nature’s glory, even as they die. Granny Corinne is ever present. I remember when she died—I was less then five, and unafraid, as I sat alone— wearing short pants and a bow tie—in the parlor of our ancestral home. She was laid out for her wake—like Snow White in her deep sleep. The morning light was passing through the parlor windows, golden like the turning leaves. The parlor was divided from adjoining rooms by imported Japanese soji screens— their paper was embedded with butterflies and leaves. Their shadows began to migrate across the room with the shifting sun. —A butterfly kissed Granny’s forehead—another lit on my hand. —A pattern of leaves trailed my bare legs. The silhouettes fluttered, giving form to the spirits of departed kin—as they welcomed Granny into their fold.

We buried Granny in our remote family cemetery—the funeral procession recalled previous rituals—braving the crude path up the hill—preceded by pallbearers on foot, the mourners stumbled through brambles as they forged their way to the graveyard.

Returning from the burial, I remember Uncle Lige—resplendent—in long hippie hair and his funeral clothes, somersaulting with his lover Jack—down the hill through the fallen leaves.

Uncle Lige was killed when I was 13.

—Like Granny, he is still with me in spirit.

I’ve often called on him for his support and inspiration. —He once said to my mother, “Don’t be surprised if Eric grows up to be Gay like me.” Maybe it was the way I’d stare at him, studying his every move—each flex

34

of muscle—his facial expressions. Now, Uncle Lige watches over my shoulder as I wander the streets of New York City and inhabit his former East Village neighborhood.

I wonder what it’s like for him, seeing our world swept by a plague.

Uncle Lige used to say, “You have to learn to bend like the willow.” —I didn’t understand what he meant until AIDS came into my life—and death became a constant “companion”—enveloping comrades in such rapid succession that I trip over the count and would lose their names if they weren’t housed in my memorial file.

There is young blonde Scott with the bright green eyes; Carlos—and Australian Tim—fair Pam—and the Jones boys, composer John and Jim the painter—David, the artist and activist—there is Huck, the frenzied Aries— beautiful Santiago and zany Ann—blue-eyed Roland—lovely Tina—and sweet Adrian— I walk with the shadows

of the men I’ve known and loved and tasted— and feel, even still, the warmth of their breaths against my skin.

The spirits of my friends and lovers who died of complications from AIDS commingle with my departed ancestors—in an extended family tree.

My guardian spirits abound—sending me back into the world. Each lends their individual attributes. —They strengthen me as I feel my footing and learn to walk again in a world I was prepared to leave.

My guardians have not relinquished me in my revival. They are stronger in me, as I am in myself. ◊ A&U • DECEMBER 2014

A&U Gallery

are limited edition photographs on subjects which overlap with works in the above medium, utilizing my mother’s pre-digital Nikon. of my Leaves memorial. Once visiting me and seeing my body of work expressive of the range of my experience of living with HIV and AIDS, we agreed that it would be meaningful to have a broad spectrum. The earliest piece R.O.T.C. dates from 1987.

It’s a morphing of male musculature with a military breastplate, constructed from metal, suede, brocade, and hardware. With long-term survivorship of AIDS being analogous to living though war, I see my creating R.O.T.C. just prior to my testing positive as being a premonition of years to come. From here selected works are like diary entries, from 1987 to today.

What mediums do you like working with?

I’m an equal opportunity material artist.

Among the mediums represented in “The Course of My Life” are wire drawings, and constructions utilizing vintage jewelry, castings of natural objects, and carefully edited salvaged hardware. In addition there

In our phone conversation you mentioned a type of spiritual opening alongside your physical deterioration around 1995, when death seemed near. Can you describe your evolution—coming back from the horizon of death, via the protease inhibitors?

A lot of this is recounted in my 1998 memoir, The Gathering (see Sidebar). Much has happened since my revival of 1996, and like many who experienced the grace of the effectiveness of the protease inhibitors, there are times when survivorship has been mercurial.

I’m fortunate that my artwork continues to be a healing force, and takes me out into the world. In recent years I’ve been inspired by younger generations of men and women, and those who identify as genderqueer, who have surfaced in the arts and activist worlds, like Visual AIDS and The Leslie Lohman Museum of Gay and Lesbian Art. They bring with them an evolved sensibility that accomOpposite page: Visitation, 2012, silver gelatin print on fiber paper, 24 by 20 inches Top: Hummingbird #21— Flying West, 2014, wire & paper, 16 by 13 by 2 inches Left: R.O.T.C., 1987, wire, suede, leather, brocade fabric and hardware, 23 by 13 by 7 inches

panies contemporary possibilities, not only in the realm of HIV, but the evolution of humanity. My neighbor James McDonald, a young man of twenty-three, recently interviewed me for an article he’s writing about my artwork and survival. Through our conversation he shared that while he and his friends hunger for knowledge of the AIDS pandemic and its influence, its history isn’t taught, and it’s up to them to seek it out. It’s these kinds of interactions that are currently giving me a sense of renewal, with validation that my life and work is of historical significance, and contemporary vitality.

What are your plans for Leaves?

I will be continuing to archive, restore, and add to the piece, along with writing the biographies of those represented in the work, with the goal of exhibiting the piece in its entirety in 2016, which is the twentieth anniversary of Leaves conception and the release of the protease inhibitors.

For more information about Eric Rhein log on to: www.EricRhein.com. To schedule a visit to see Eric’s exhibition at Johnson & Johnson, please e-mail: CorporateArtProgram@corus.jnj.com.

For more information about Visual AIDS, visitwww.visualAIDS.org; for more information about The Leslie Lohman Museum of Gay and Lesbian Art, log on to www.LeslieLohman.org Sean Black interviewed Patrik-Ian Polk for the October cover story.

DECEMBER 2014 • A&U

35

DANCE TEACHERS

A BATON ROUGE THEATER COMPANY USES DANCE TO EDUCATE ABOUT HIV/AIDS

W

hen audiences at the Manship Theatre in Baton Rouge, Louisiana, sat in anticipation of the first performance of the 2014 season, they received something they hadn’t expected: a message about the shockingly high rate of HIV/AIDS in their community.

The executive director of the Manship, Renee Chatelain, delivered the message in a curtain speech.

“There were audible gasps in the audience when they learned how prevalent HIV/AIDS is in their community,” Chatelain tells A&U. The announcement wasn’t meant to make the audience feel bad, or guilty. It was the kick-off of a platform to use dance performances for public education on HIV/AIDS in the Baton Rouge area, one of the more conservative and religious parts of the country.

For the first time in its history the Manship Theatre is dedicating its entire dance season as a platform for raising awareness about HIV/AIDS, and raising funds for children who contracted the infection before birth.

36

The initiative is called “Dance Speaks,” and while Chatelain admits that patrons of the theater are probably not the ones in the community at greatest risk of contracting HIV/AIDS, the fact that they are less at risk, and also less aware of the crisis, made it doubly important to reach them.

“In our community there are some good works being done by some groups,” she says.

“But as far as information, someone may get a small grant and put up a billboard in a low income area as a one-off measure, and there is generally no call to action and little follow-up.”

Chatelain says the theater wanted to build awareness over time in an ongoing way and counter the belief in the community that ‘AIDS doesn’t apply to me,’ and reinforce the idea that it affects everyone, directly or indirectly.

All dance companies on the season’s roster approached Dance Speaks enthusiastically, were eager to do whatever they needed to, Chatelain says. Many have participated in similar campaigns throughout the country

and with the organization Dancers Responding to AIDS. In fact, that group, as well as Broadway Cares, were models for Dance Speaks, Chatelain says.

It’s not the first time the Manship Theatre has made improving public health a stated goal. Last season the theater with Baton Rouge General Medical Foundation on a melanoma screening campaign connected to the River North Dance Chicago residency at the theater.

This year, through Dance Speaks, the theater will raise money through targeted marketing campaigns, post-concert curtain speeches and donation campaigns by performers. All the funds will be directed to sending local HIV-positive kids to Camp Hope, a one-week summer camp in Texas.

Dance Speaks media campaigns will bring awareness of the disease to the Baton Rouge area, and may be continued after the 2014–15 season is over.

Chatelain says the creation of Dance Speaks was largely influenced by Dr. Karen Williams, a pediatric infectious disease specialist, and the only doctor in Baton Rouge treating children who contracted HIV perinatally.

Williams, who works at Our Lady of the Lake Physician Group in Baton Rouge, recently established a donor-advised fund at the Baton Rouge Area Foundation, “Hope for Positive Youth Fund,” which will handle contributions to support youth living with HIV in South Louisiana and make it possible for HIV-positive children to attend Camp Hope this coming summer.

For several years Williams has encouraged her patients to attend Camp Hope, but she aims to send all of those who qualify to the camp next summer. The cost is $1,000 per child to attend the camp, and the goal is to send at least fifteen kids. Beyond Camp Hope, Williams hopes to expand support for her patients, who range in age from birth to seventeen, as they get older.

A&U • DECEMBER 2014

Ten Tiny Dances photo courtesy The Advocate

by Larry Buhl

clockwise from top left: photos 1, 3 by Green Photo Media; 2 courtesy The Advocate

Camp Hope was started in 1996 and children from Baton Rouge attended for the first time in the summer of 2012.

“Because of some of the success in treating HIV infection, we now have more children who are becoming teens and young adults, able to participate in activities such as those at Camp Hope,” Williams tells A&U. “But, they are often challenged by social circumstances including stigma, parental loss/illness, and medication adherence. At Camp Hope they are encouraged to take on challenges and supported as they take the medications that they must take every day to survive.”

regimens of antiretrovirals and AZT. Nevertheless, the region continues to be hard hit by the disease. Here are the statistics that made the audience gasp: The Louisiana Office of Public Health ranked Baton Rouge first nationally among major metro areas in 2011 in estimated AIDS case rates. And according to the office’s Louisiana HIV/AIDS Surveillance Quarterly Report that came out last December, new cases are increasing among twenty-five to forty-four-year-olds.

Long-term, Chatelain says she hopes to advance understanding of the underlying community issues that help spread the disease—misinformation, poverty and stigma

Williams adds that HIV affects entire families.

“When there is a child who has contracted HIV perinatally, at least one of the parents is infected. Almost half of the kids we follow are not living with a biological parent. And kids have an issue with adherence. Younger kids have to take [antiretrovirals] in liquid form, which can often make them nauseated. If they miss doses, they can develop drug resistance, and unfortunately there aren’t many drug options that come in liquid form.”

Perinatal cases of HIV/AIDS are going down, albeit slowly, thanks to HIV screening early in the pregnancy cycle—and a bill passed in the Louisiana legislature this year mandating HIV tests in the third trimester should help as well—and effective prenatal

are the biggest—and be part of a support network that provides education and raises money for research and treatment of HIV/AIDS. Through an informal brainstorming group, Chatelain, Williams, and others developed a plan for reaching out to the city’s Department of Public Health, and they’ve had encouraging feedback.

The mayor of Baton Rouge, Kip Holden, has publicly made HIV/AIDS one of the four priority areas for the Healthy City Initiative and the office has said that it “welcomes the opportunity to broaden the collaborative group to include an innovative program like Dance Speaks in the conversation.”

Though regional, the Manship Theatre has been attracting nationally known talent.

DECEMBER 2014 • A&U

Du-Shaunt Stegall known by his stage name, Fik-Shun, the 2013 competition winner of Fox television’s So You Think You Can Dance kicked off the 2014 dance season and the Dance Speaks initiative. The theater also has musical performances ranging from R&B to rock to folk.

Baton Rouge native and global health professional Ashifa Sarkar Vasi is consulting on Dance Speaks and tells A&U that her main goal is to reduce the stigma of getting tested, something that contributes to the high rate of HIV transmission in the area. The fact that dance performance is the avenue for building awareness is helpful for

luring the community to learn about HIV/ AIDS without fear, Vasi, who is also a dancer and dance teacher, tells A&U. “In a dance company, you get support from other dancers, and that’s the kind of energy we want to build here. We want to build a strong support network that’s even greater than the sum of its parts.”

For more information on Dance Speaks, please visit manshiptheatre.org.

Larry Buhl wrote about CDC’s We Can Stop HIV One Conversation at a Time campaign for the October issue.

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STRAIGHT TALK

FIVE HIV+ HETEROSEXUAL MEN OPEN UP ABOUT SEX, STIGMA AND FINDING THEIR VOICE

by Chip Alfred

M

en who have sex with men—we all know this group bears the heaviest burden of HIV in the U.S. But what about men who have sex with women? Why aren’t there more resources out there addressing their issues—awareness campaigns, social networks, support groups, public forums? What is it like for a straight man living with an illness that’s historically (and continues to be) associated with gay men? In a candid roundtable interview, A&U asked a group of heterosexual men across the country why we don’t hear more about or from them, and they actually had a lot to say. Are straight men the forgotten group in this epidemic? What you’re about to read is a snapshot of their perspectives—their fears, their pet peeves, their hopes for the future—straight from the heart.

Rev. Chris Kimmenez, fifty-three, is a pastor and clinical psychologist in Philadelphia.

Edward Lowry, fifty-four, is a certified mental health/recovery peer specialist in Philadelphia.

Joshua Middleton, twenty-four, is a licensed bail bonds agent and blogger in Murrieta, California.

Steven (not his real name), thirty-three, is an IT professional in Portland, Oregon.

He agreed to be interviewed for this article if we agreed not to use his name.

Mark Peterson, forty-nine, is an HIV linkage coordinator in Detroit.

A&U: Describe your life leading up to and after your diagnosis.

Chris: Prior to diagnosis I was a drug-addicted combat veteran with a criminal record and PTSD. After diagnosis, I began seeking treatment for not only my HIV but counseling for my

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addiction and PTSD. I have been clean since 1995 and undetectable since 1996.

There were some relapses and setbacks, but there was a fairly steady progression.

My wife, who is HIV-negative, and I started a church focused on people in recovery, people living with HIV and other chronic health challenges. We recently celebrated thirty years of marriage.

Joshua: When I was younger, I struggled with substance abuse, specifically crystal meth. I had one night stands and visited brothels in Tijuana. I didn’t always use protection and to this day I don’t know if it was my ex-girlfriend or another girl who infected me. I was a kid who grew up much too fast and didn’t get a chance to enjoy something we can never get back, our youth.

How did you deal with finding out you were HIV-positive? Have you learned

how to handle it better?

Edward: I made them take the test three times. I refused to accept it and denial was the only way I knew to deal with it.

Today is different. I realize that HIV is an immune deficiency, not a moral deficiency.

Today I am not just living with HIV; I am living in spite of it. I am thriving with HIV. Mark: It took me about five years to come to grips with living with HIV. When I was diagnosed, they told me I probably had three to five years to live. After a fog of depression and self-destruction, I slowly started to give back to the programs that helped me out. I began working in HIV. From my first days as a volunteer, I knew that the best thing I could do with whatever time I had left was to become an advocate and activist.

Chris: In the beginning it consumed my identity. Twenty-five years later it is part of who I am, but my life is so full that A&U • DECEMBER 2014

on many days I don’t even think about it.

Joshua: When you’re battling an enemy, you want to know what you’re up against.

I studied HIV to know how to prepare myself. I found a support group on Facebook called International Group for People Living with HIV/AIDS and Those That Love Us. It has been a pillar of support and has thousands of members living with HIV/AIDS from all over the world. I think that creating a support network of both those who are positive and negative is so essential. That sense of unity helps me know that I am not alone in this fight.

Steven: I can count on one hand the number of friends I’ve told and I’ve been very selective with those people. I don’t feel comfortable talking about it in social situations for the most part. I feel like this wouldn’t be the case if I were gay. I believe HIV is something that is discussed often among gay men.

Edward: The main challenge is stigma—not only around having done something offensive or indecent to get HIV in the first place, but as a straight man there is always that extra aura of disbelief and stigma around my “real”

were married in 2011.

Joshua: When I have spoken with women I was interested in about it, I found myself having to do a lot of educating. For most of them it’s the first time they have ever met someone who was “out” about being positive although they may know many who simply don’t know their status. It’s something in the straight community that is read about in a textbook—not heard from someone standing right in front of you. Whether you’re HIV-positive or negative, everyone faces rejection. We simply have one

sexual preferences or experiences.

more reason to be rejected, an extra obstacle to overcome.

Steven: People can make insensitive jokes regarding HIV and I feel it would open up questions I don’t want to answer by confronting them, so I tend to leave them alone. I’ve tried dating poz women and that hasn’t worked.

The people I found generally had more baggage or just the types of baggage I didn’t want to deal with. My more successful relationships have been with serodiscordant partners.

photo by Holly Clark Photography

Edward Lowry

What are some of the challenges you face as a straight man living with an illness that’s often been identified as a gay man’s disease?

Mark: The first was having to deal with homophobia. The next was having to deal with people for whom the concept of a straight man with HIV was either threatening the reality that women can pass HIV to their male sex partners, or that I was somehow a closeted gay man or an injector.

DECEMBER 2014 • A&U

Has it complicated your interpersonal relationships?

Edward: I was an injection drug user who shared needles with a woman who must have been HIV-positive. I didn’t want anyone to know. Not even my family, let alone trying to have a relationship with a woman. The fear of rejection stayed with me for a long time before I eventually met my soulmate [PWN-USA organizer and activist Waheedah Shabazz-El]. We

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Rev. Chris Kimmenez

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Joshua: Sometimes a woman might look at me as if I am somehow “unclean” simply for being positive or that I live a very promiscuous lifestyle and have slept with every girl in town. The stereotypes that are imprinted in their brains come to light when a straight man discloses. I find myself having to start from step one when what should be important is getting to know each other on many other levels besides simply a medical condition. It often feels like a record playing the same song over and over.

Edward: Communities of color are overwhelmed with so many social and economic challenges. Then along comes HIV.

HIV is like peeling an onion—yet another layer of something else we would rather not have to deal with. These communities are slowly learning how to support those who disclose their HIV status.

Do you think heterosexual men are the “forgotten group” or one of the forgotten groups in this epidemic?

Mark: I’m a white straight man. I have amassed more than my share of unearned privilege in our society, so I’m not going to take on the role of the marginalized one.

At the same time, yes—it IS harder for us.

Support groups almost never exist. They try to put us in with women (women who A&U • DECEMBER 2014

photo by Holly Clark Photography

Talk about disclosing your status. Do you think there is more stigma being a heterosexual man?

Steven: I generally choose not to disclose my status. When I date I put off disclosure for a variety of reasons. First and foremost I want people to get to know me for who I am before this fact gets thrown into the mix.

Mark: When I disclose my status, I wait about five seconds and begin to answer the question I KNOW is coming, “How did YOU get it?” Then you can usually tell what the other person is thinking. It’s only a few seconds, but it’s always there—the incredulity space, the judgment zone.

HIV are a population in this epidemic that needs to be counted, serviced and allowed to give input to help end the epidemic. It’s really hard when you feel there is nowhere for you to fit in, but you still have HIV.

photo courtesy J. Middleton

So what needs to change?

Joshua: We need to unify and demand that every voice be heard. Funding is not an excuse for ignoring a group of people. Eventually that low-risk group if continually ignored can grow into a high-risk group. We need to be in the schools, jails, HIV conferences, and anywhere there is an ear willing to listen.

Edward: At the federal level there ought to be inclusion in research and studies to track the trauma connected to heterosexual men living with HIV as well as identify the service gaps. At the grassroots level we need to come together to alleviate internal stigma by supporting and holding each other up and address the external stigma by being visible and developing ourselves as community educators and public speakers.

Chris: We need to stand up and advocate for ourselves. We need to push ourselves into the room and take a seat at the table.

see us as the guy who infected them) or tell us that our sexuality doesn’t matter. We’re still sexual and sensual men. We also don’t have a sense of community or brotherhood like the gay community before us.

Joshua: The world can’t seem to accept the medical facts that there are many of us who are straight men living with this virus.

Part of it is the lack of hetero male activists willing to stand up and say, “Yes, I am HIV positive and heterosexual.” People need to realize that love is love. HIV doesn’t care what you are or how you categorize yourself. It does not discriminate and we should not either.

Edward: Heterosexual men living with DECEMBER 2014 • A&U

Do you feel that being an HIV positive heterosexual man has held you back in your personal life journey? Has it helped move you forward in any way?

Chris: Since I got clean I haven’t let anything hold me back. This has made me even stronger and more determined to do what God has called me to do. I am too busy living to think about dying.

Mark: I believed what they told me at first—that I would die soon. I gave up thinking about going back to school. I gave up my dreams of being a teacher and a coach. Even now, more than twenty years later, can you imagine how a community would react if their child’s history teacher and flag football coach “came out” as HIV positive? I also believed for too long what I heard in public health structures: that I was a target, that I was a consumer, that I was a cog needed in their search for funding, but NOT an essential voice in the process.

If you could wave a magic wand and be granted one wish for straight men living with HIV, what would it be?

Edward: That heterosexual men living with HIV gain the support and courage they need to come out, speak up and provide input to the response to ending the

Joshua Middleton HIV/AIDS pandemic around the world.

Joshua: It would be for us to be more vocal when it comes to activism. We can’t continue to sit on the sidelines and just expect things to happen. Let’s make them happen.

Mark: For us to no longer look outside ourselves for our support, leadership and advocacy. At the same time, have others accept our self-advocacy as empowering to us, and not threatening to them.

What is your outlook on life and living today?

Chris: If we choose to we can lead full, productive, satisfying lives with this disease and still maintain our identities as heterosexual men.

Joshua: I think this virus has shown me that despite whatever you go through or no matter how many times you think you’ve hit rock bottom, there is always that chance to pick yourself up. Getting diagnosed with HIV had a very special way of showing me the true meaning of life.

For more information, visit: Joshua Middleton’s blog: www.pozitivehope.com;I HAVE HIV: http:// youtu.be/9pMRe5ZFolc; HIV International Group: http://youtu.be/j-Wd3FilUWY. Chip Alfred is an A&U Editor at Large based in Philadelphia.

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A&U • NOVEMBER 2014

Big F*cking

DEAL

AFTER LIVING OUTSIDE OF THE LIMELIGHT FOR THREE YEARS, BIG BROTHER CHAMPION “EVEL DICK” DONATO RETURNED TO REALITY TV IN COUPLES THERAPY ON ONE CONDITION—HE COULD DISCLOSE HIS POSITIVE STATUS TO EDUCATE ABOUT AIDS

by Dann Dulin

Photographed Exclusively for A&U by Sean Black

NOVEMBER 2014 • A&U

43

E

VEL Dick is a spark plug.

When he speaks, his entire being ignites into a single revved moment. Meeting with him recently in my Los Angeles home, I witnessed the glowing embers. At one point, Dick picked up my tiny digital recorder to use as a prop to emphasize a point, then set it back down. Slightly concerned, but so engrossed in his tale, I didn’t bother to check the recorder. At the end of three engrossing hours, however, I discover that only eleven minutes of our talk had been recorded. Dick had accidentally pushed the “stop” button!

Dick was deeply apologetic when I phoned him and he responded, “Well, when can we do it again?!” A real trouper, he agreed to repeat the interview on the phone from his home in Orlando in a few days. Even during that session we got disconnected! He called back and we finally completed our talk. This story almost never happened. What follows is a combination of our two encounters.

Before he arrived at my home, I didn’t know what to expect. My research uncovered what others have said about him, “He’s an asshole,” “You want him to be your friend, not your enemy,” and “He goes after what he wants and will mow everyone down who’s in his way.”

Dick casually enters sipping a can of Coke and dressed like a blue-collar worker, sporting a short-sleeve powder blue collar shirt, a white Tank undershirt, scruffy blue jeans, and black hiking boots with white socks. He has extreme tatts, piercings, along with his three trademarks: two day’s growth of beard, ebony-colored painted nails, and speckled neon shocking maroon highlights amid his dark brown spiky hair.

Once in his seismic presence, all preconceived notions dissipate. This guy, whose Twitter following is over 130K, is at once

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A&U • OCTOBER 2014

disarming and gracious, and from time to time acts younger than his years, yet sustains the sage of his chronological age. Evel is a badass alpha cat, who in the end, snuggles up in your lap.

Dick is here today to discuss his recent major life change. On VH1’s Couples Therapy, which aired this fall, he revealed that he has been HIV-positive since 2011, and part of the reason he had to depart Big Brother 13.

He came to town to speak at the opening ceremonies of the Los Angeles AIDS Walk and then joined other participants on the walk.

First off, he wasn’t born with the name Evel Dick. It was created when he was pondering an e-mail address for himself.

He liked the daredevil Evel Knievel and the song “Evil Dick” by Ice-T’s band Body Count, but “Evil” was already taken and so he chose “Evel Dick” instead.

A former club manager and concert promoter, Dick was raised in Long Beach, California. One summer, nearly a decade ago, he was hired to be Keith Richards’ stand-in on the set of Pirates of the Caribbean: At World’s End. But Evel Dick’s claim to fame is being Big Brother’s highest paid winner, and its oldest winner, forty-four at the time. He brought in the highest ratings in 2007 on Big Brother 8 when he appeared as a contestant, unaware that his daughter, Daniele, (Dick also has a son) with whom he had not spoken for two years, would also be a houseguest. “The audience could see how hard I tried to mend that relationship. Her being there showed my softer side, which I think endeared me to the hearts of the viewing audience,” he notes, adding that many viewers later told him he inspired them to heal their own relationships.

In 2011, the producers invited Dick and Daniele back as a team for Big Brother 13.

Their protocol is for cast members to have their blood tested. Six shows in they asked him to report to the house doctor, which is highly unusual during filming. They escorted him across the CBS Studio Center lot to the Big Brother green room. “We got one negative and one positive result on the HIV test we did with you,” the doctor explained, requesting more blood. Over the next four hours, they extracted Dick’s blood three times for testing. The wait was extremely discomforting. The doctor told him that had they known he was HIV-positive, he would never have been allowed in the house. The final results arrived—positive.

“My first and foremost concern was for my girlfriend, Stephanie—way up and beyond myself,” pronounces Donato, of his initial reaction to the diagnosis. Dick had previously been tested several times, but the last time was for Big Brother 8 in 2007. “I NOVEMBER 2014 • A&U

didn’t cheat on my relationship with Stephanie,” he tells me, “so I must have been infected before that, probably in 2008 or 2009, with a stripper in Vegas.”

The production company sent a car to take him to his mother’s house in Long Beach. He spent the night and they talked about his diagnosis. “These were the most surreal moments of my life. It was like walking through a dream, a cloud. Nothing was really clear; I had no sense of direction,” Dick winces, with a whimsical air. He crisscrosses his ankles and leans back into the living room chair. “Anyone else who is diagnosed is usually set up with a doctor’s appointment, given information and counseling. With the show doctor, the only thing he said to me was, ‘Well, you know it’s not a death-sentence anymore and you know there’s plenty of treatments….’ and so on. ‘If you need any help just give the producers a call.’”

The next day, he made a statement at his mother’s house before a CBS camera crew: “There are some things more important than a television show. I’m leaving the show because of a friend.” (CBS wasn’t happy about what he said.) He also posted his statement on his Web site. “It wasn’t the truth, but it wasn’t a lie,” he clarifies. The ‘friend’ was his girlfriend. Evel was terrified that she might also be infected.

A media frenzy ensued and rumors flurried. “The funniest one was when someone swore that their brother worked in an emergency room in some Orange County hospital and my brother was admitted because he was in a horrific car accident. “I don’t even have a brother!” expounds Dick, with a laugh that morphs into a hacky cough. “It was inane. People just made up stories!”

But one story stuck. That Dick’s drug test had come back dirty. “I’m assuming because of the whole rocker image and the fact that I had been with my best friend, Mike, in San Francisco in 2003 when I found him dead of a heroin overdose. My typical reply was: You don’t know shit! It’s the truth. Nobody knew,” attests Dick. “Not one rumor even came close to the truth. His on-line fans asked, “Why did you leave?” Initially, his response was flip, “I left bacon on the stove” or “I forgot to milk the goat.” If they pressed, he would reply, “Listen, my life is not a reality show. I have a personal life and I’m keeping it that way.”

After the visit with his mom, Evel Dick was eager to return to Denver, where he resided with his girlfriend. LAX was swarming with paparazzi and so CBS flew him out of Orange County’s John Wayne airport. As he waited for his flight, he received a call from Big Brother’s executive producer. He asked Dick to write a letter to the remaining players

45

encouraging them to stay on the show. Dick replied, “Are you for real?! Really? You want me to write a letter to your cast? I think you should take care of your own cast,” he proclaimed in a sarcastic tone. “I have enough on my plate...”

On landing in Denver, he called Stephanie, who was shocked to hear from him.

Being on Big Brother meant the cast was not allowed any communication with the outside world. Dick disclosed that he left the house

46

and was on his way home.

“Not one to play out scenarios in my head, I thought that she would break up with me once I told her,” he says, cracking his knuckles, whirlygigging side to side. “That was without a doubt one of the toughest talks I had in my life.” However, Stephanie was supportive and told him that if she were infected, they would deal with it together.

Stephanie’s subsequent test was negative.

“And this is where I do thank CBS,” Dick

states with hardy punctuation. “If it wasn’t for their testing protocol, the probability of her being infected…,” he halts, then proceeds with a strained gaze, “I don’t even know why she wasn’t infected. I thank them for keeping their mouths shut and letting me deal with it on my own.” Crossing his leg then twirling his bootlace with his thumb and finger, he contemplates. “I also thank CBS for keeping a tight lid on it. Whether they did it out of concern for me or for themselves because of legalities,” he stutters a few chuckles, “I have no idea. I’m sure they were covering their ass. It’s a network!”

Evel’s foray into the HIV/AIDS community began at Denver’s Planned Parenthood who provided him with a full packet of HIV information. He found an HIV center and set up an appointment. When he arrived at the center, he found a massive green awning and over the entrance in bold letters, “HIV/ AIDS.” He was apprehensive because he was still dodging the media. “Someone’s going to click a picture and I’m fucked,” recalls Dick. But he entered and spoke with a social worker who referred him to the University of Colorado’s infectious disease unit. (“They are on top of their game there and on the cutting edge.”)

Donato’s first doctor told him his viral load and his CD 4 count. “He could have been reading a Chinese restaurant menu in Chinese!” blurts Dick. “It was a lot to take in. The doctor discussed treatment options with him, remarking, “Once you start you’ll have to take them for the rest of your life.” Dick asked for her opinion and she advised in favor of drug treatment. He did. Currently, Dick takes one pill a day, Atripla, and the virus was undetectable after three months of treatment. It still is.

“When I first started taking the meds I was strung out, couldn’t sleep, couldn’t eat and I had these vivid dreams. It felt like I was on a bad bender,” grimaces Evel, flashing a mug, as though he had tasted curdled milk.

“These drugs are strong. You have to give yourself time to adjust.”

Fast-forward three years, to early 2014. A producer from VH1’s Couples Therapy reached out several times to Dick, who was now living in Swords, Ireland, a suburb of Dublin. (An avid traveler, at twenty-nine he lived in Paphos, Cyprus, for two years.) He wanted Dick and Stephanie to be guests. However, they had broken up ten months earlier. Donato turned down the offer.

“I had never heard of the show and A&U • DECEMBER 2014

wasn’t really interested. Even after I watched an episode, I turned them down. When they offered more money, I reconsidered.”

Living with a secret can be painful and after three years, Dick was ready to go public.

He revealed his plan to the show’s casting director who responded that he did not have to do this in order to be on the show. “I’m gay,” said the casting director, “and in my world this is not really a big deal.” Evel responded, “Well in my world this is a Big Fuckin’ Deal.”

Dick spoke with the show’s producers.

“They were good with my plan,” he says, veering forward placing his elbows on his knees, exposing a box of Marlboros in his shirt pocket. “Then they wanted to know if I would take $10,000 less! I said, ‘Listen…

I know that you guys want to look at the show and say that this is life-changing and all of that bullshit. For some of the people who go on, it might be. For more than a lot of the people, it’s face time on television and a paycheck—and you know it. For me, it’s going to be…life-changing. Once this is aired, my life will never be the same. So fuck you, I’m not taking a dime less.’” The producers withdrew the lower offer. “I decided that if they wouldn’t let me reveal my HIV status then I would not do the show.”

In May, they flew Dick and Stephanie to Los Angeles for a seventeen-day shoot on Couples Therapy. The night before shooting, he decided to come clean with Stephanie. “I brought her into the show so I felt myself somewhat responsible. Since they were staying in separate hotels, he called Stephanie and told her his plan.

“NO!” she yelled. “You can’t do this to me. This isn’t fair.” Stephanie was adamant.

“It went on and on and on and we spoke for over three hours, but I talked her off the ledge,” recounts Dick.

During filming, he met privately with Dr. Jenn, the psychotherapist on the show. He explained that he was HIV-positive. During another session/episode Dick and Stephanie were both in Dr. Jenn’s office. At one point, Dr. Jenn asked the crew to leave. The three discussed the situation. “Stephanie was only concerned about how it made her look,” Dick insists. Dr. Jenn told her, “Listen, this is Dick’s disease. If he wants to talk about it, it is his choice. If you’re not comfortable, we can send you home right now.” Dick sums up, “That put Stephanie back on her heels. From that point on, it was a bit smoother for me.”

The revelatory Couples Therapy episode aired and it was an instant media bombshell.

The news was reported on local television, CNN, and People magazine. Even the Elton John AIDS Foundation posted the news on its Web site. Dick learned that every cast member of Big Brother 13 had been contactDECEMBER 2014 • A&U

ed by CBS, informing them that CBS had not told anyone back in 2011 because there was no chance that anyone could have been infected. “They were covering their own ass,” declares Evel. “Why are they calling them now?! I didn’t fuck anybody the first time. I didn’t fuck anybody the second time. I was there to win money!”

The next day, Evel received a call from a Big Brother producer. Dick dons a high register using a cautious tone, mimicking the female producer, “‘Hi Dick….You know… you’re part of the Big Brother family and I just wanted to see how you’re doing.’ I said, ‘Cut the shit. I haven’t heard from you in three years! ‘Big Brother family,’ my ass.”

Undeniably, Donato’s announcement was the buzz; however, some did not want to talk about it. VH1 reached out to CBS’s afternoon show, The Talk, co-hosted by Julie Chen, the Big Brother host and wife of CBS’s president, Les Moonves. “The Talk would be a perfect forum to be a guest and talk about being HIV-positive,” remarks Dick.

CBS turned them down. “CBS remembers [those days on Big Brother] one way and I remember it another way. They were concerned about certain statements I had made after I left the show. They also released a statement back then claiming that leaving the show was my choice. That’s a lie. I was never given the option to stay. They’re also afraid that I might sue them for discrimination,” Dick contends. “That isn’t even on my radar. I just want to…live my life.”

Just then, a muffled sound can be heard somewhere on Evel’s person. Listening closer, well, there’s only one way to say it, there’s a series of farts. He comments flatly, “That’s not me. That’s my cell’s notification.”

He reaches in his pants pocket, retrieves his phone, and turns it off. Quickly his attention returns to our topic.

“Going public has been such a great experience for me. Negative shit-talkers are just a minute percentage. It’s not worth even mentioning,” he says. “Look, I’m an open, straightforward, everything-on-the-table kind of guy. This is one of the reasons why I wanted to go public. HIV is a...disease….”

Dick presses on, firmly. “This is not a gay disease; it’s not a straight disease; it’s just a fucking disease!”

Dick’s future plans are uncertain. Currently residing in Orlando, Dick wants to

return to Swords, Ireland. “The encouraging factor that helped push me to move to Dublin was their socialized health care. All my medication is free, all of my appointments are free,” he states proudly. “When you’re diagnosed [in the United States], if you don’t have insurance, you’re fucked. Granted, there are some governmental programs like ADAP that one can qualify for. I had money, but I was totally wiped out. That was also tough on my relationship with Stephanie.”

Before he returned to the United States in May to film Couples Therapy, he went to Dublin’s St. James Hospital, his HIV facility. He informed them that he would be gone for several months and they asked him how much meds he had left. “I told them about two weeks worth. In the States, they act like these meds are crack and you’re going to sell them on the street. It’s so weird. They won’t give you a refill until you’re down to four or five pills,” he points out. “They asked if two month’s supply of meds would be enough to hold me over and I said, ‘Yes.’ Then they said, ‘Well, let’s give you three month’s supply just to make sure.’ Awesome. This would never, ever happen in the States.”

Since Dick’s revelation, there’s talk of him doing a PSA and he’s been invited to speak on the college lecture circuit. What would be his focus? “Testing!” he announces with urgency.

“Forty percent of the people who are carrying this disease don’t even know they are carrying it!” He shakes his head. “And they’re passing it on and passing it on. In the United States alone one in 300 people are infected. Those are crazy fucking numbers. 45,000 people a day on this planet are being infected. Whaaat?!”

Dick sits quietly for a moment. Then, a solemn stare comes over his face and there’s a glitter in his golden-brown eyes. “This speaking gig is so right down my alley, you know.

Speaking in public doesn’t make me nervous.

It would be so nice to leave this part of my life behind and move on to something that really, really matters.” He pauses and in his typical devil-may-care attitude, Evel Dick concludes, “I can help others instead of just talking about a stupid fucking television show.”

“Going public has been such a great experience for me.

Negative shit-talkers are just a minute percentage. It’s not worth even mentioning....”

Gratitude to Traci Daniel-Batalon for her guidance.

Dann Dulin is Senior Editor of A&U.

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Undetectable, NOT INVISIBLE A Flash Collective Workshop Mounts an “Art Intervention” at New York Public Library

by Larry Buhl

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photos by Alina Oswald

ast year Jason Baumann was curating “Why We Fight,” a chronicle of the history of HIV/AIDS activism for the New York Public Library, and tapped artist, writer and activist Avram Finkelstein to blog about the exhibit. “[Avram] told me what he really wanted to do was lead a flash collective for the Library,” Baumann, Collections Coordinator of Collection Assessment, Humanities, and LGBT Collection at the New York Public Library, tells A&U. Baumann jumped at the chance, and the Undetectable Flash Collective was born.

Except, technically, the collective was born without a name or a theme. The only guidelines were that it be about HIV/AIDS and be current.

“We had already mounted a successful exhibit of the history of the epidemic, but this time we wanted to speak to how HIV is affecting people today,” Baumann says.

Experimenting with art-making in public, Finkelstein, a founding member of the collective that created Silence=Death and AIDSGATE, has been assembling groups of people to produce visual works for public spaces.

He’s conducted eight of these Flash Collective workshops around North America in 2014.

The collectives are not just about HIV/ AIDS—Finkelstein had led collectives on

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criminalization, gentrification, gender and identity­—but he admits his “beat” is communicating the complexities of the virus.

The collectives are all about action. In Finkelstein’s words, they are an “experiment in political art-making focused on the creation of a one day collective to produce a single art intervention in a public space.”

Anybody can be a part of the collective, which, for the New York Public Library, took place in several sessions over two months.

“I make it a condition that the collectives be interdisciplinary, like the early

days of [HIV/AIDS] activism,” Finkelstein tells A&U. For what eventually was named Undetectable, Finkelstein put out an open call, in conjunction with Visual AIDS New York, and gathered a group of fifteen—not only artists, but writers, activists, journal-

ists, budding curators, policy wonks, some Radical Faeries, and folk who were simply interested in exploring the topic.

“I consider the diversity of backgrounds in the collective to be a strength of the project,” he says.

In the first meeting Finkelstein engaged them to think about art as intervention; in other words, how art can lead to social engagement and collective action.

And he encouraged them to confront difficult ideas and consider innovative ways of communicating them.

Then came intense “mapping” exercises about what HIV/AIDS is today. Several issues arose: • The HIV/AIDS crisis is not over • Pharmaceutical intervention has changed the disease, not ended it • Fear and stigma still surround HIV/AIDS • When, how, and what to disclose is still part of a complex landscape • Criminalization, race and class are all part of the HIV/AIDS fight • The sero-divide is important, yet not dealt with The multiple topics surrounding HIV/AIDS today reflects the vastness of the disease, Finkelstein says.

“In a very concentrated period of time the collective engaged a conversation on HIV/ AIDS. And I believe that in any room, there are people who have something to say [about HIV/AIDS] whether they know it or not.”

A&U • DECEMBER 2014

Undetectable, in all its meanings But the final product had to be specific as well as broad. In the mapping exercise, a common word was “undetectable,” in its social, political, gender, race, and every other meaning.

Including invisibility of HIV/AIDS in society today?

Actually no, says Finkelstein. “Invisibility is another interesting interpretation of undetectable and one that we didn’t have time to explore, in fact probably the only aspect of undetectable that we didn’t cover.”

One main point of the word “undetectable,” as far as this art intervention collective was concerned, was an acknowledgement of a state of flux.

“We act as if HIV/AIDS is not in flux, that it’s stable. But in fact if you talk to anyone in the community, that’s not the case. We know a lot but we don’t know everything.”

Finkelstein drives home the point about how undetectable means that policies are built around compliance and how HIV-positive people will be compliant in institutional settings.

“The sero-divide is an institutional divide.

Right now, the view that HIV-positive people are responsible for disclosing, and responsible for taking their meds to stay healthy, that takes everyone else off the hook.”

Communicating the message The group’s next step was to agree on a way to visually communicate all of these complex, interconnected ideas that fall DECEMBER 2014 • A&U

under the word undetectable, and do it in a way that would engage people in the public sphere—a public sphere consisting of four disparate branches of a public library which may have thousands of people coming through per month who are not going there for the exhibit and not necessarily thinking about HIV/AIDS at all.

The second session involved creating a text that could inform an audience of undetermined race, gender and class, while delivering the collective’s political perspective on the questions raised about the word undetectable.

The result was a lenticular printing technique—giving the illusion of depth and ability to change when viewed at different angles—for both the light box posters and 2,500 postcards.

Finkelstein said the collective wanted to illustrate that the issue of antibody status is in flux by using a “ghosting” of positive and negative signs. Underneath the signs is run-on text that covers the medical meaning of undetectable as well as its social and policy implications. It was translated into five languages to reach multiple audiences.

WE’RE AT A CROSSROADS IN HIV TREATMENT. HIV POSITIVE & HIV NEGATIVE ARE NO LONGER THE ONLY POSSIBILITIES WHEN DISCUSSING SEROSTATUS. THE WORD UNDETECTABLE HAS EMERGED IN THIS CONVERSATION. UNDETECTABLE ORIGINATED AS A MEDICAL TERM FOR AN “ACCEPTABLY” LOW PRESENCE OF HIV IN THE BLOODSTREAM

DEPENDENT ON STRICT COMPLIANCE WITH “SUCCESSFUL” ANTIRETROVIRAL TREATMENTS. MAINTAINING UNDETECTABLE VIRAL LEVELS SIGNIFICANTLY REDUCES HIV TRANSMISSION, BUT IT IS NOT A CURE FOR AIDS & DOES NOT REMOVE STIGMA. NOT EVERYONE HAS ACCESS TO INFORMATION OR TREATMENTS, SO THE EMPHASIS ON ACHIEVING UNDETECTABILITY REINFORCES RACIAL & SOCIOECONOMIC DIVIDES. BECAUSE THERE IS MORE MONEY IN LIFELONG TREATMENT, PROFIT-DRIVEN DRUG COMPANIES HAVE NO FINANCIAL INCENTIVE TO FIND A CURE. UNDETECTABILITY SAVES LIVES. BUT WHOSE LIVES? & WHO PROFITS? WHERE’S THE CURE?

Content is everything Communication in the public sphere has changed greatly since the days when Silence=Death and Gran Fury projects were conceived. When asked about how technology-enabled social media in all its forms has changed how an artist/activist communicates messages, Finkelstein insists that the need for content is still paramount.

“The technology is just the delivery mechanism. A billboard poster is different than a smart phone. But you still have to say something, and that’s our job.”

The poster installation will be on display at four library branches in far-flung parts of New York City—Hunters Point, Jefferson Market, St. George, and Washington Heights—through December, but the conversation will continue in a blog under the name Undetectable Collective.

Larry Buhl writes A&U’s monthly Hep Talk column.

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Running Into Options an nnrti candidate seeks to keep on track to expand therapies

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has often meant that patients have had to curtail treatment with established drugs in this class.

In this case, the “resistance profile would need to be borne out in further clinical study,” notes Dr. Hedy Teppler, executive director, Infectious Diseases, Merck Research Laboratories. However, researchers do have human-based data about how doravirine might improve upon other limitations of the class.

“There can be a lot of variations and attributes within any particular class, whether it’s toxicity profile, whether it’s the activity profile,” says Dr. Teppler, “and so I think that we know that there are limitations of some of the currently approved NNRTIs, for example, the neurotoxicity associated with efavirenz.

We know that one of the newer approved NNRTIs, rilpivirine, has efficacy issues; in fact it’s only labeled for use in patients who have a viral load below 100,000 copies, and that’s essentially an efficacy limitation, as some patients need to start treatment with much higher values of viral load at baselines. We feel this compound, doravirine, has the

potential to have a better safety profile than efavirenz and a better efficacy profile than rilpivirine.”

At the 12th International Congress on HIV Drug Therapy held in Glasgow in early November, researchers presented interim results of an ongoing Phase 2b clinical trial that compared once daily oral doravirine (25, 50, 100 and 200 mg), plus tenofovir/emtricitabine (TDF/ FTC), with efavirenz (600 mg) plus TDF/FTC in treatment-naive patients with HIV-1 infection. The presentation, led by Dr. Josep M. Gatell, head, Infectious Diseases and AIDS UnitsIDIBAPS, Hospital Clinic, Barcelona, outlined safety, efficacy, and tolerability data of the randomized, double blind, dose-ranging clinical trial, whose treatment end-point is ninety-six weeks.

Doravirine was found to have good tolerability and efficacy overall when compared to efavirenz at forty-eight weeks of dosing, says Dr. Teppler. Doravirine, at all doses, showed a seventy-six percent overall virologic response rate, which is comparable to that of efacontinued on page 62 A&U • DECEMBER 2014

illustrations by Timothy J. Haines

I

n this next-generation era of anti-HIV meds, research and development has turned to candidates with alternative functions, like reducing HIV reservoirs; candidates with better side effect profiles; candidates with simplified dosing—in short, better therapeutic options.

Better therapeutic options allow patient-centered treatment to come to the fore as the range of decisions to be made increase and as individuals living with HIV and on treatment become attuned to how their own particular body responds to treatment.

It’s almost as if the treatment-empowerment days of the early epidemic—when those affected by AIDS took their health into their own hands and became on-the-fly health experts— has come full circle. Now, however, patient-centered treatment can begin with more answers than questions, more particulars than generalizations, more context about what works and what doesn’t.

One pharmaceutical company that has taken this to heart is Merck, with its I Design campaign, which, through guided worksheets and apps, encourages individuals with HIV and on treatment to pursue with their physicians dialogues about current treatment goals, health-related lifestyle choices, and family medical history, among other concerns, all in an effort to tailor their own health and well being. This strategy is important in our community’s efforts to improve adherence and achieve viral suppression. But Merck is also dedicated to expanding those options for tailoring, as well.

For example, Merck is currently studying doravirine (MK-1439), a next-generation candidate of the non-nucleoside reverse transcriptase (NNRTI) class. At ICAAC 2012, researchers presented findings that doravirine looks to have solid efficacy against NNRTI-resistant viruses (comparable to or better than other standard-of-care NNRTIs) in cell studies. The resistance profile of NNRTIs

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lifeguide

Good News, Bad News

T

he past year has been a difficult one in the HIV cure arena.

Several promising and widely reported cases of HIV clearance concluded with disappointing results, as the virus remerged despite high hopes and expectations to the contrary. Now two novel and interesting cases have been detailed sparking new hopes, questions, and concerns.

The Good News An abstract, presented at the XX International AIDS Conference, described an Argentinean woman who seroreverted years after being diagnosed with advanced HIV disease. Cases (such as the Visconti cohort) have been previously reported of individuals who began antiretroviral therapy within several months of HIV infection, discontinued therapy and remain undetectable. However, this is the first case reported of a person who had progressed to AIDS and is reported “functionally cured” after discontinuation of ART. This case puts forth an interesting question: Are there others who have seroreverted after being diagnosed with AIDS and being on therapy for years’?

According to Dr. Analia Uruena of Helios Salud, Buenos Aires, Argentina, and colleagues, the fifty-one-year-old woman was hospitalized in 1997 with wasting syndrome and toxoplasma encephalitis. At the time of hospitalization, the woman tested HIV-positive on two Western Blot tests. No baseline viral load measurement or CD4 counts are available.

The woman was treated for toxoplasma encephalitis and was provided AZT, ddI, and nevarapine, a standard-of-care HIV regimen at the time. She subsequently experienced treatment failure one year after initiating therapy.

She was then started on D4T, 3TC, and indinavir and achieved and maintained viral suppression. Three years later, indinavir was switched to abacavir, and she remained on this regimen until discontinuation of ARVs in 2007 due to dyslipidemia and lipodystrophy.

The woman has remained undetectable since beginning D4T, 3TC, and indinavir in November of 1997, with the exception of

52

a single viral load blip at 54 copies, in August 2000. Subsequent tests have found no remaining HIV antibodies and no HIV provirus in PBMCs (peripheral blood mononucleated cells).

Her CD4 counts range from 568 to 895 and she has a current CD4/ CD8 ratio of 1.4. She is reported to be absent of the delta 32 deletion and the protective HLA-B alleles.

The Bad News Last spring the news of the reemergence of virus in the “Mississippi Baby” dashed hopes that “curing” newborns of HIV was in reach. Doctors had hoped that immediate and aggressive antiretroviral therapy in newborns might be able to clear HIV before viral reservoirs had a chance to form. A case reported in the October issue of the Lancet adds further doubt that this may be possible.

The case of an Italian baby boy who received duel HIV therapy hours following birth, presented some interesting and concerning questions in regards to immediate ART in newborns. Sensitive assays had shown that the child temporarily cleared HIV, only for the virus to reemerge three years later, shortly after the discontinuation of antiretroviral therapy. What sets this case apart from the “Mississippi Baby” is that during the time that HIV appeared to vanish, signs of immune activation, often seen in HIV patients, continued to occur.

In December of 2009 a woman with a history of intravenous drug use who was unaware of her HIV status, received care at a hospital in Milan. At forty-one weeks of pregnancy, she gave birth to a small, premature baby boy.

At twelve hours-old, the infant tested HIV-positive with the Western Blot and HIV-1 antigen P24 assays. He had a viral load of 152,560 copies per mL. He immediately received zidovudine and nevirapine as prophylaxis and, by Day 3, his viral load had dropped to 13,530. He was then given ritonavir-boosted lopinavir, zidovudine,

and lamivudine and experienced viral load decreases to 3,971 copies per mL by Day 15, 49 copies after three months, and below the level of detection at six months.

ARVs were discontinued at three years of age after the child tested negative for HIV antibodies, DNA, p24, and RNA. Despite finding no trace of HIV, upon examination of PBMCs, doctors found activated CD4 and CD8 T cells, alterations of the T-cell differentiation pathway, with reduced naive and central memory, increased effector memory and terminally differentiated CD4 and CD8 T cells, all consistent with HIV infection.

After two weeks off of treatment, the child’s viral load rebounded to 36,840 copies per mL and treatment was reinitiated. Ten days later tests for HIV antibodies and antigens were once again positive.

After three months back on treatment, the child’s viral load was undetectable.

This case was different from the “Mississippi Baby” in that, despite testing HIV-negative after ARVs, immune responses similar to those seen in HIV-positive people occurred. This could be an indication of ongoing HIV replication.

The authors hypothesize that the low birth weight of the child, early in utero infection and high baseline viral load may have hindered ongoing viral remission.

Jeannie Wraight is the editor-in-chief and co-founder of HIV and HCV Haven (www.hivhaven.com) and a blogger and writer for TheBody. com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in the Bronx, New York.

A&U • DECEMBER 2014

illustration by Timothy J. Haines

the hiv cure front faces disappointment mixed with hope

OCTOBER 2014 • A&U

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Mirror Image

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the practice-focused e-newsletter, which will come out every two months and will share both clinical and non-clinical information to guide the treatment of hepatitis C. The first newsletter has already been posted on-line and can be accessed at http://www.aahivm. org/hcv.

In addition, the Institute plans to expand some of AAHIVM’s HCV policy and educational initiatives, such as the clinical workshops on co-infection.

“The great news is, the new medications [for treating HCV] are much simpler to work with than interferon, and the success rate is very high,” she says. “But there are issues that doctors and their patients need to be aware of as well. Can patients adhere to the regimen? What about interactions with HIV meds? Those are just a few.”

Navigating the payment maze In addition to wanting to stay current on treatment guidelines, a majority of AAHIVM’s survey respondents said they need help in jumping the many payment hurdles for their patients. Sixty percent of survey respondents expected or have experienced insurance or cost access barriers to prescribing hepatitis C treatments to their patients, Hoffman-Terry says.

And the Affordable Care Act, which has made private insurance available for many more low-income people nationwide, has not made paying for meds simpler, or cheaper, in every case. Even 80/20 copays for meds can be an unrealistic burden for some patients who want a more expensive regimen. Many times doctors can find better payment options for new HCV meds by purchasing them directly from the pharmaceutical companies, but most doctors don’t know this.

“The paperwork is a big burden for all doctors, and the payers know this,” said Dr. Hoffman-Terry. As Clinical Associate Professor of Medicine, Morsani College of medicine of USF, Lehigh Valley Health Network, Hoffman-Terry admits that she

relies on several assistants to look for the best and cheapest way to get her patients covered with the newest meds. “But not all doctors treating hepatitis C patients have that kind of assistance,” she adds.

And Dr. Hoffman-Terry says she’s disappointed that so many payers have restrictions against allowing HIV experts to treat HCV in their co-infected patients.

“It doesn’t make a lot of sense, because HIV and HCV are similar diseases in many ways, and having one doctor who understands both can make it much simpler for the patient and make it easier to promote adherence and manage any side effects.”

Dr. Hoffman-Terry admits that many of the criticisms she and other HCV doctors with payers may be worked out in the coming months. In the meantime, she believes the Institute will be an important clearinghouse of information and a go-to resource for understanding the breakneck-speed of developments in the treatment of hepatitis C. Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His podcast on employment issues, “Labor Pains,” can be found at www.laborpainspodcast.com.

A&U • DECEMBER 2014

illustration by Timothy J. Haines

M

ore HIV providers are treating hepatitis C than ever before—provided the private insurers and public payers permit it.

That’s one reason the American Academy of HIV Medicine (AAHIVM) has created an Institute for Hepatitis C, an interactive on-line space to, as their Board of Directors say, “advance knowledge of HIV/ HCV co-infection care through educational initiatives, prevention and testing information, relevant research and policy activities.”

I spoke with Dr. Margaret Hoffman-Terry, Vice Chair of the AAHIVM Board of Directors, about why the organization believes the institute is needed now. She explained that a recent survey conducted by the academy showed that approximately one in four patients being seen by HIV treatment providers in community clinics, private practices, and other settings is infected with hepatitis C. She also pointed out that eightyone percent of the clinicians responding to the survey said they believed they had the proper knowledge to treat hepatitis C, but the vast majority of those (ninety-two percent) also said they would like even more professional support on this subject.

Hoffman-Terry also explained that research in the hepatitis C virus (HCV) has benefited greatly from the framework of HIV research, and consequently is progressing rapidly, making huge strides in a few years that previously would have taken decades.

“We saw the treatment world for hepatitis C mirroring treatment for HIV, especially with the new antiretroviral drugs that have come out in the last year,” she tells A&U. In her own practice, about one-third of her patients are co-infected, a ratio that many other doctors are seeing (AAHIVM’s statistics show that one-quarter of the 1.2 million HIV-infected Americans already in care for HIV are co-infected with HCV).

“The institute is a way to give providers with co-infected patients more up-to-date information in this rapidly changing field.

They [the providers] already understand virology, resistance, drug–to-drug interactions, and the psychosocial needs of this population, but they would also like additional support as well.”

Much of that support will be through

with a new institute for hcv, aahivm shows parallels between treating it and hiv

MILLIONS OF AMERICANS HAVE HEPATITIS C. MOST DON’T KNOW IT. TALK TO YOUR DOCTOR ABOUT GETTING TESTED. EARLY DETECTION CAN SAVE LIVES. www.cdc.gov/knowmorehepatitis

TM

E R U T L U C S THE

AID OF

FILM

A Millennial Wake-Up Call In the Wake of a Shocking Survey, a M•A•C AIDS Fund Film Reminds Youth that It’s Not Over

by Stevie St. John

“I began this project knowing close to nothing about HIV, and worried that a documentary such as this could be dull, or worse yet, become a lecture more than a film. Clearly HIV has an image problem; it has become stale, which strikes me as a catastrophe considering the end of AIDS is in sight.

But the goal of It’s Not Over isn’t to wag a finger or make a PSA, that’s been done. Instead, I want to inspire my generation to care. Fact is, the last de-

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Filmmaker Andrew Jenks with Lucky Mfundisi A&U • NOVEMBER 2014

photos by Andrew Jenks Entertainment

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ore than three decades into the HIV/AIDS epidemic, major medical advances could soon usher in an AIDS-free generation. There are more effective tools and strategies than ever before to reduce the viral load of people living with HIV and to prevent transmission of the virus to their partners—provided, of course, that they know their status, seek care, and know about prevention strategies.

But Millennials—an age group that’s key in stopping the spread of HIV–are shockingly uninformed about the disease, according to information released this year by the M•A•C AIDS Fund (MAF), an HIV/AIDS funding organization and the charitable arm of M•A•C Cosmetics.

In conjunction with World AIDS Day, which is observed annually on December 1, MAF has released a documentary called It’s Not Over. The film, which is available for viewing on Netflix, aims to remind viewers, especially young viewers, of the fact put forth in its title: that the epidemic is not over.

The filmmaker, and the documentary’s anchor, is Andrew Jenks, who covered the 2012 presidential election for MTV News. Jenks lays out his goals in a filmmaker statement:

OCTOBER 2014 • A&U

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cade we’ve seen incredible advances in the fight to end the epidemic, but there is more work to do. The epidemic Is Not Over. Consider that the number of people living with HIV increased by 18% from 2001 to 2011, leaving more than 34 million people around the world to grapple with the disease, many of whom lack access to care or don’t know they are infected.

Raising public consciousness is paramount. That’s where It’s Not Over comes in.

The torchbearers for the film will be my generation, the millennials that have grown up hearing about the epidemic but are increasingly tuning out messages of safety and awareness. Now is the time to engage this group in supporting this final push to end the epidemic once and for all.”

In the film, Jenks highlights the stories of three people involved in the fight against HIV. Its subjects include: Paige Rawl, an HIV-positive college student in the U.S.; Sarang Bhakre, an HIV-positive gay playwright in India; and Lucky Mfundisi, an HIV-negative HIV/AIDS educator in South Africa.

The three represent vastly different experiences. Rawl and her friends readily talk to Jenks about how medication can protect an HIV-positive person’s partner from contracting HIV, and they note that meds can help an HIV-positive woman have a healthy baby.

Bhakre calls contracting HIV “the mistake of my life” and, as he is not on medication, reflects on the anxiety he experiences about safely sharing intimacy with his boyfriend.

And Mfundisi works to educate youth in Khayelitsha, a South African township that, according to MAF, has some of the highest rates of HIV in the world.

Nancy Mahon, MAF’s director, views the film as a call to action.

“Share it, watch it…do something. Protect yourself,” says Mahon, calling for the tough conversations that need to take place about

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HIV status and prevention methods.

“How you change people is through other people,” she says. “At the end of the day, there’s still so much stigma about this.”

The release of the film comes just a few months after MAF released the results of a survey that demonstrated just how deep that stigma runs, and that shows how illequipped many young people are to make informed decisions about sex.

The survey focused on students ages ten to twenty-four, which MAF notes is “the only population where AIDS death rates are still rising globally.” Per UNAIDS, it’s also a demographic that accounts for nearly one-third of new HIV infections worldwide.

Among the survey’s unsettling findings: less than one-third thought that unprotected sex would put them at risk for contracting HIV. The results also revealed that HIV stigma remains prevalent, with only about half of respondents saying they would treat a friend with HIV normally. Many indicated

Jenks with Sarang Bhakre (above); and that theyRawl would shun an HIV-positive friend Paige (left) or classmate.

“As bad as I thought it was going to be, it’s worse,” says Mahon, who noted that the stats “are a wakeup call for us….It’s not easy to talk [to teens] about sex and drug use and all those things, but you’ve got to have those conversations—if you don’t have them, it’s fatal.”

Mahon said that a lack of comprehensive sex education programs could account for some of teens’ ignorance about HIV. “I think that may be a real issue,” she says. “We have to listen on this….We have to ask kids and young people, ‘What is the issue?’ and that I don’t really know….That’s part of what we’re trying to do….AIDS is still relevant and still affects 35 million people’s lives globally.”

We have the medication to end the epidemic, Mahon notes, but ignorance and stigma stand in the way—as they have since the beginning of the HIV/AIDS crisis.

One way MAF is hoping to catch the attention of young people: by working with pop star Miley Cyrus, who next year will release a lipstick to raise money for the organization. Mahon acknowledges that Cyrus, well-known for her “twerking” performance, is controversial but suggested that her headline-grabbing prowess might not be a bad thing.

“We hope that we can really get young people to pay attention…[and] make informed choices,” Mahon says.

For more information about the documentary It’s Not Over, go to www.itsnotoverfilm.com. The hashtag #ItsNotOver is being used on Twitter.

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).

A&U • DECEMBER 2014

he R3VNG (Reshaping 3 Letters through the Voice of the Now Generation) program team is heading up an HIV testing event to recognize World AIDS Day and to encourage young men, in particular, African-American and Latino men who have sex with men (MSM) ages eighteen to twenty-four, to know their status and “take revenge on HIV.” Organized by APLA Health & Wellness (APLAHW), the event at the Gleicher/Chen Health Center in L.A.’s Baldwin Hills will offer free HIV tests and STD screenings, opportunities to connect to care, and an empowering, educational atmosphere complete with free food, live DJ, and concert-ticket and gift-card giveaways. For those interested in learning more about PrEP and scheduling appointments related to this new HIV prevention method, a health care plan enrollment specialist and a medical provider from the Pendleton/Goldman

PrEP Program will be on site.

APLA Health & Wellness (APLAHW) offers a range of services, including primary medical, dental, testing, and PrEP counseling, among others. Responding to the needs of the community, it seeks to reach low-income gay and bisexual men of color and transgender individuals living in Los Angeles County and help provide linkages to care.

Date: December 5; time: 11 a.m.–5 p.m.; location: Gleicher/ Chen Health Center (at Coliseum Street in the Baldwin Hills Shopping Center), 3743 S. La Brea Avenue, Los Angeles, California.

For more information, find R3VNG on Facebook, Instagram, or Twitter. Visit APLAHW at aplahw.org, or on Facebook or Twitter.

Alternate Endings continued from page 27 or senior in high school, in Tennessee.

Then I moved to New York, and there was certainly an awareness surrounding HIV/ AIDS. It was very pressed upon us to be safe. And as a young artist, with an interest in activism, I volunteered, attended meetings, and tried to become educated.

I’ve definitely seen more compassion toward people living with HIV. Ten years ago, people had no problem brandishing words like “clean.” Sero-sorting was part of people’s personal prevention habits. The thinking around that has evolved. So the language has changed, and evolved.

What’s really amazing is the preservation of legacy and history [of AIDS]. There are so many artists that I can think about.

I can see them in the sky looking down on me when I do stupid things, wagging their finger, or maybe showing me the way.

And if those artists hadn’t been lost, they might have actually been my mentors. So [Day With(out) Art] is about honoring their legacy, and then sharing it the best I can... because I am here.

What do you wish for the twenty-fifth anniversary of Day With(out) Art? TK: I hope that the project is an effective reminder that the HIV/AIDS

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crisis is not over. There’s enormous hope and cause for optimism about the tools we have to fight the crisis. In this country we deal with healthcare in a way that we’ve never done before. No matter what people think of President Obama’s healthcare initiative, [they may start] thinking of more holistic ways of dealing with the human body, death and dying, access to logical and rational healthcare.

It’s important, because AIDS is a part of this larger conversation.

DJ: I am excited to share this amazing video work, and [different] perspectives about art and AIDS. Representations of [HIV/AIDS] can be very textured, idiosyncratic, beautiful, and might inspire [people] in their own lives to create that relationship to HIV/AIDS. I couldn’t end the conversation without bringing up the Ebola crisis, and the parallels drawn between behaviors surrounding it here in the U.S. (panic, quarantine) and the early AIDS crisis.

Derek Jackson reminds that tens of thousands of people had died before AIDS was called an epidemic. And yet, he believes that we can learn from history, and avoid mistakes made in

the past. Tom Kalin, on the other hand, is not that certain. “It’s useful for me to remember that in ACT UP many of us learned from members within that activist organization who were older than we were, and who experienced the civil rights movement of the sixties. The optimistic part of me believes that we learn from what we did right and wrong in the past, and correct things,” he adds.

“In light of the emerging Ebola crisis, it’s hard for me not to think back to the early days of AIDS....But they are totally different, separate crises.”

The twenty-fifth anniversary of Day With(out) Art is followed by a post-screening discussion with commissioned artists. To check it out, stop by the School of Visual Arts Theatre in New York City, on Monday, December 1, World AIDS Day. For more information about Visual AIDS and the twenty-fifth anniversary of Day With(out) Art and its related events, please log on to: www.visualaids.org.

Alina Oswald is Arts Editor of A&U. A&U • DECEMBER 2014

photo courtesy APLAHW

T

A Calendar of Events

Support

at the Race to Deliver *a 4 mile run/walk and Kids’ Races*

Donate Now racetodeliver.org Sunday, November 23, 2014 Central Park

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Cooking and delivering nutritious meals for people living with severe illness.

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A&U • OCTOBER 2014

Treatment Horizons continued from page 50

virenz, at seventy-one percent. Increased CD4 cell counts relative to baseline were noted in all treatment groups.

“It also can be taken without regard to food and has a low propensity for causing drug-drug interaction,” she adds.

When it came to comparing the incidence of central nervous system (CNS) adverse events between doravirine 100 mg plus TDF/FTC and efavirenz with TDF/FTC, patients in the doravirine arm showed a significantly lower incidence of one or more of reported CNS adverse events than those in the efavirenz arm by Week 8. (The doravirine dose—100 mg—was selected based

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on safety and efficacy data through twenty-four weeks, and was given to all participants in the arm, which enrolled an additional 132 patients, for the expansion phase of the fairly large trial.)

In the doravirine-treated group, the incidence of CNS adverse events was 22.2 percent compared to 43.5 percent in the efavirenz-treated arm. Additionally, doravirine has been shown to have minimal central nervous system toxicity.

Patients in the dose-ranging part of the study and received doravirine were found to have a lower overall incidence of drug-related adverse events—not just CNS-related adverse

events—when compared to patients who received efavirenz (36.7 percent vs. 57.1 percent, respectively), after forty-eight weeks of treatment.

Next up is a Phase 3 clinical trial that will compare doravirine and ritonavir-boosted darunavir, both in combination with other antiretroviral therapy, for efficacy, safety, and tolerability in treatment-naive patients.

Chael Needle wrote about a Harris Interactive/ViiV Healthcare survey exploring attitudes toward HIV care among positive individuals for the August issue.

A&U • DECEMBER 2014

DECEMBER 2014 • A&U

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Survival Guide

[a portrait by sean black]

Nathaniel Duclos Miramar, Florida A young Hatian American hoping to touch the lives of others.

“HIV is my girlfriend, money is my mistress and God is my witness. Trust God, fuck HIV. And don’t get discouraged, don’t give up—believe in God and He will make a way to break the chains every day.”

Sean Black is an Editor at Large of A&U. 64

A&U • DECEMBER 2014

WE KNOW HIV/AIDS medication therapy But we also know you want a pharmacy that cares for the whole you.

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©2014 Walgreen Co. All rights reserved.

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