August 2013 digital issue

An Immunotherapy Candidate Personalizes Treatment • How Do We Define “Cure”?

AUGUST 2013 • ISSUE 226 • AMERICA’S AIDS MAGAZINE

12TH ANNUAL SUMMER READING ISSUE Lawrence Schimel • Terry M. Dugan • Lisa Sandlin • Dorothy Alexander • Robert Levithan • Zoey Martinson • Paul Schulz & Christian Lütjens • Evan Guilford-Blake

Olivia Culpo

Miss Universe 2012 Combats AIDS Stigma & Motivates Young Women to Make a Difference

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? STRIBILD can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency.

Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.

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

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

• Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking STRIBILD, your hepatitis may suddenly get worse.

Do not stop taking STRIBILD without first talking to your healthcare provider, as they will need to monitor your health.

STRIBILD is not approved for the treatment of HBV. Who should not take STRIBILD? Do not take STRIBILD if you: • Take a medicine that contains: alfuzosin, 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? Serious side effects of STRIBILD may also include: • New or worse kidney problems, including kidney failure. Your healthcare provider should do regular blood and urine tests to check your kidneys before and during treatment with STRIBILD. If you develop kidney problems, your healthcare provider may tell you to stop taking STRIBILD. • Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones.

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

• Changes in your immune system.

Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking STRIBILD. The most common side effects of STRIBILD include nausea and diarrhea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.

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

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

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

• If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD. • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. • If you are breastfeeding (nursing) or plan to breastfeed.

Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in STRIBILD can pass into breast milk, and it is not known if this can harm the baby.

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

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

STRIBILD is a 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 STRIBILDTM (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.

• 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

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

• pimozide (Orap®)

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

• sildenafil (Revatio®), when used for treating lung problems

• rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®) • 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 (Combivir®, Emtriva®, Epivir® or Epivir-HBV®, Epzicom®, Kaletra®, Norvir®, Trizivir®) 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 contains 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 hydrochloric (Vascor®, Bepadin®) - bosentan (Tracleer®) - buspirone - carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegreto®) - 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: August 2012

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. © 2013 Gilead Sciences, Inc. All rights reserved. QC14549 02/13

TM

AIDS WALK

LOS ANGELES OCT. 13, 2013 A fundraising walk starting and ending in West Hollywood Benefiting

and more than 20 other L.A. County AIDS service organizations.

SIGN UP TODAY!

aidswalk.net

213.201.WALK Text WALKLA to 292929 to register!

A Special Thank You to

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Created and produced by MZA Events.

AIDS Walk Founder/Producer: Craig R. Miller. Š MZA Events, 2013

c o n t e n t s August 2013

30 Cover Olivia Culpo, Miss Universe 2012, Talks to A&U’s Chip Alfred About Carrying On the Tradition of AIDS Advocacy & How She Helps to Empower Women and Girls to Pursue Their Goals

Departments

Features 22 Gallery Book of Love: In Positive Pictures, Paul Schulz and Christian Lütjens Write a History of AIDS & the Gay Community in Images

6

Frontdesk

8

Mailbox

9

NewsBreak

16

Ruby’s Rap Ruby raps with Robert Levithan

26 Creative Colors

viewfinder

A Cut Above: Stylist Chaz Dean Makes AIDS Advocacy the Most Natural Thing to Do

18

Just*in Time

20

My Turn

34 A Growing Legacy A&U Features Works by Winners of Our First Annual Christopher Hewitt Award: Lisa Sandlin, Dorothy Alexander, Terry M. Dugan & Evan Guilford-Blake, plus an Interview with Lawrence Schimel cover & inside photos by Fadil Berisha

lifeguide 38

Destination: Cure

39

Hep Talk

40

Treatment Horizons

42

The Culture of AIDS

44

Lifelines

48

The Scene

A&U Frontdesk

The Walking Cure

A

ugust carries a lot of mixed emotions for me. For one thing, it’s the month I was first diagnosed with AIDS. For another, it reminds me of when I was first preparing to launch A&U, which debuted in the Fall of 1991, and all it took to get there. I remember the late eighties when my best friend, Mark, who was only a few years away from dying from complications of the disease, was paying my rent so I could pursue a literary form of AIDS activism; I remember, too, when I first laid out the plans for this magazine with a good friend of mine, Rich, who helped me to see what the vision of an AIDS magazine could become: attractive in design and strong in emotion. Thanks to Mark and Rich I pushed myself to take what was simply a wisp of an idea and move it forward into being a full-fledged national HIV/AIDS magazine.

August is also the month for many of us when we’re at the peak of good weather, when the chance still remains for an idyllic week off at the beach, or at the lake if you’re in the Midwest, or hiking the mountains if you’re in Colorado. It’s a time when a lot of us who love to read get to take some time off from office work and devour the five-hundred page tome that we ordered from Amazon or that collectible book of AIDS poetry (perhaps Michael Klein’s 1992 Poets for Life: Seventy-Six Poets Respond to AIDS) that we found in the stacks of the Strand bookstore in Manhattan. For me paradise is a beach bag full of such books, both the ones written for entertainment and the ones written for remembrance. It’s almost a duty, but not a chore mind you, to immerse myself in a month of a million words—sentences that send me away from the day-to-day and into exotic locales and emotions that are distinctive and deeply penetrating—all the while the waves are crashing at my feet and I’ve almost forgotten that I’m living with a virus that may be undetectable but still present.

It’s also a time when I can catch up on those AIDS books—sadly fewer and fewer are produced each year—that publishers send to me for review. A couple of them look promising this year: Jessica

A M E R I C A’ S A I D S M A G A Z I N E issue 226 vol. 22 no. 8 August 2013 editorial offices: (518) 426-9010 fax: (518) 436-5354

Verdi’s My Life After Now, Alysia Abbott’s Fairyland (reviewed in this issue), and David Levithan’s Two Boys Kissing. But as each year produces a leaner crop of AIDS literature, perhaps reflecting the nation’s apathy toward the disease, it’s so important that A&U continues to celebrate writers, emerging and established, who are still dedicating their poetic powers to discerning what are the central metaphors and the daily experiences of those living with HIV. Trying to dismantle the real world of AIDS stigma, there are the imaginations of thousands of writers who, through sheer literary perseverance, can enlighten through both powerful imagery and poetic action. Turning words into deeds is what makes good AIDS writing so magical. And so real. Taking me back to my early days as an AIDS literary activist, this year’s 12th Annual Summer Reading Issue continues the magazine’s tradition of spotlighting vibrant voices dedicated to the literary fight against AIDS. Featured writers Dorothy Alexander, Lisa Sandlin, Terry M. Dugan, and Evan Guilford-Blake all carry on a tradition that our first literary editor, the late Christopher Hewitt, helped to nurture, and whose name now graces the award that all of these writers have won.

But now it’s time to do more than read.

It is time (after our well-earned weeks at the beach) to look forward to September and throughout the Fall for the more than twenty AIDS walks that A&U proudly sponsors. (In the September issue we will print a full listing of these AIDS walks so you can mark your calendars.) So join us and lace up your walking shoes. By signing up your sponsors you are supporting badly needed services for People Living With HIV/AIDS. For lack of funding is, and has always been, the reason so many of us walk for the cure.

From the AIDS walks to the pageant walks of the Miss Universe contest (our cover story this month is the 2012 Miss Universe contest winner and AIDS educator Olivia Culpo) it is high time that we exercise our show of strength for everyone who is walking to stop AIDS.

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 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, LaMont “Montee” Evans, Diane Goettel, Sally Hessney, Angela Leroux-Lindsey, Sherri Lewis, Alina Oswald, Dale Reynolds, Elizabeth Rodgers, 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. ©2013 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

DANCE FOR LIFE PU 4/C SATURDAY, AUGUST 17, 2013 Auditorium Theatre of Roosevelt University, 50 East Congress Parkway, Chicago To purchase tickets and for more information, please visit www.danceforlifechicago.com or call 312-922-5812 COMPANIES SCHEDULED TO APPEAR DanceWorks Chicago, Giordano Dance Chicago, Hubbard Street Dance Chicago, River North Dance Chicago, Thodos Dance Chicago INDEPENDENT ARTISTS Two World Premiere Performances choreographed by Harrison McEldowney & Jeremy Plummer and Randy Duncan, Abigail Simon & Mauro Villanueva perform Le Corsaire Pas de Deux Benefiting AIDS Foundation of Chicago, The Dancers’ Fund and Chicago House

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A&U Mailbox

“Scott Bakula made an interesting comment about AIDS and the stigma attached to it. ‘What we need to learn from those days is: How do we express our differences and how do we survive being different? How can we exist in a world where not everybody is open to people’s differences? And that’s across the board…color, gender, sexual identity….Anytime anybody steps forward, it helps so many people who we don’t hear about.’”

I completely enjoyed Behind the Candelabra, costarring Scott Bakula [cover story, “Stepping Forward,” by Dann Dulin, June 2013]. Michael Douglas was so campy as Liberace and he deserves some kind of award for his performance. [Editor’s note: Michael Douglas, Matt Damon, and Scott Bakula all received Emmy nominations for their acting.]

Scott Bakula made an interesting comment about AIDS and the stigma attached to it. “What we need to learn from those days is: How do we express our differences and how do we survive being different?

How can we exist in a world where not everybody is open to people’s differences?

And that’s across the board…color, gender, sexual identity….Anytime anybody steps forward, it helps so many people who we don’t hear about.”

Mr. Bakula is very perceptive.

—Lewis Clark Jefferson Cool Valley, Missouri Liberace was a one of a kind performer; he was an original. Millions of people loved him, whether they were straight or gay. Liberace knew how to entertain his public; he

8

knew his public and what they expected from him. He was a showman extraordinaire.

We all miss him and our lives are less for his death. It is sad that he died as a result of AIDS complications. Liberace, I toast you.

—Susan Vatrotento Pismo Beach, California

Say a Little Prayer Boy, the memories that came flooding back to me about the first five years of AIDS in New York City [Gallery, June 2013].

I was there, right on the front lines of the battle. What a very difficult time it was. I can’t believe that I survived that period of time when so many were dying around me.

We were all praying for some treatment to come along and save our friends. We were very desperate for a cure. Things have gotten a lot better, but there is still work to be done. This exhibit helps remind us how far we need to go to bring an end to this pandemic once and for all. Anyway, thanks to the New-York Historical Society for a breathtaking and memorable exhibit. I’ll be sure to tell all of my friends to go.

—Tristan Van Dermont New York, New York

People Have the Power It is with profound sadness that I read about the passing of José Fernando Colón in your publication [NewsBreak, June 2013]. José was a hero to me. He put his whole life into focusing on the scandals related to AIDS treatment in my homeland of Puerto Rico. He was truly a great man and he will be sorely missed by the many people he helped through his activism.

And the best tribute would be to keep fighting corruption in his name.

—Katy Durizzo-Bentinez Isabela, Puerto Rico

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

A&U • august 2013

photo by Art Streiber

Keyed In

NEWSBREAK Ndebele Funeral Ndebele Funeral, a play by Zoey Martinson, will bring its story of aspiration and loss in modern South Africa to the seventeenth annual New York International Fringe Festival this month. Produced by Smoke and Mirrors Collaborative, and directed by Awoye Timpo, the play is set in a Soweto shantytown and follows three characters: Daweti (Zoey Martinson), an HIV-positive college grad who has retreated to a shack to build her own coffin with government-issued supplies; artist Thabo (Yusef Miller), Daweti’s best friend; and Jan (Jonathan David Martin), an Afrikaner whose job it is to check up on the use of the government supplies. The play, which has toured South Africa, also features original music from Spirits Indigenous and gumboot dancing from the mines in Jo’burg, as well as humor.

Martinson, who serves as co-artistic director of Smoke and Mirrors, is an accomplished actress, director, and playwright. A&U had a chance to speak with Ms. Martinson as she prepped for the festival.

Chael Needle: Daweti is a college grad who has exiled herself because she is HIV-positive and has lost hope in her dreams and plans. One of her responses to her serostatus and her situation—building a coffin—seems to drive the action of the play. What prompted you to breathe life into this character?

Zoey Martinson: While I was working as a volunteer in Ghana, West Africa, this man, who was originally from South Africa, told me the story of his best friend’s life in a shack outside Soweto. The story stuck with me and found its way into this play. I tried to create as specific a character as possible in Daweti—she is a college graduate who has decided at this point to invest her hopes and dreams into building a coffin. I think this play is an important piece of theater because it welcomes the audience into a world that isn’t represented in modern drama. We take you to the inside of a shack in modern South Africa and shed light on the lives of people that exist there.

How did working on the play in Soweto and Cape Town, where you had residencies, impact your creative process?

It helped me make the play more specific. I used my time there to interview people and weave their words into the story. Sometimes I hear sections of the characters’ dialogue and my mind jumps to the person who shared that piece of their life. The actors in Soweto and Cape Town were fearless and helped me define each character. They put their hearts into my play and I am grateful because it made the story better. Originally I was afraid to have them read it because I was an American trying to tell the story of modern South Africa. I was freaking out during the first read-through. When it ended there was silence and I thought they were trying to find a way to leave. This woman started crying; she was one of the people I had interviewed, [and] she said that she was so moved that I wrote this play.

photos by HunterCarningPhotography.com

How does Ndebele culture feature in the play?

The Ndebele are artists; they use color and patterns. The character Thabo is an artist so I found that fitting. I use the death ritual from the Zulu and Ndebele in the play as part of Daweti’s preparation for her own death.

What kinds of conversations do you hope Ndebele Funeral creates for audiences?

Each character represents a different piece of South Africa, so I hope the play offers people a wider scope of life in a shack. If the audience leaves having felt one moment of connection to the characters, I will be satisfied .

Ndebele Funeral, a finalist for the Eugene O’Neill Center: National Playwrights Conference and the LARK’s Playwright’s Week, is receiving its New York premiere production with its run at Teatro Circulo.

Perfomances of Ndebele Funeral are on select dates between August 9 and 25 at Teatro Circulo, as part of the New York International Fringe Festival. On August 25, there will be a talk-back after the show. For more information, log on to: www.smokemirrors.org. To purchase tickets: www.FringeNYC.org.

Chael Needle is Managing Editor of A&U. august 2013 • A&U

9

The

one

for me

COMPLERA NEW ART 4/C Patient model. Pill shown is not actual size.

What is COMPLERA? COMPLERA® is a prescription HIV medicine that is used as a complete regimen to treat HIV-1 in adults who have never taken HIV medicines before and who have an amount of HIV in their blood (this is called “viral load”) that is no more than 100,000 copies/mL. COMPLERA contains 3 medicines – rilpivirine, emtricitabine and tenofovir disoproxil fumarate. It is not known if COMPLERA is safe and effective in children under the age of 18 years.

COMPLERA® does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. Avoid doing things that can spread 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, do not share personal items that may contain bodily fluids. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others.

IMPORTANT SAFETY INFORMATION What is the most important information you 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 have ever taken other anti-HIV medicines.

COMPLERA may change the effect of other medicines and may cause serious side effects. Your healthcare provider may change your other medicines or change their doses.

Do not take COMPLERA if you also take these medicines: • anti-seizure medicines: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek) • anti-tuberculosis medicines: rifabutin (Mycobutin), rifampin (Rifater, Rifamate, Rimactane, Rifadin) and rifapentine (Priftin) • proton pump inhibitors for stomach or intestinal problems: esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), dexlansoprazole (Dexilant), omeprazole (Prilosec), pantoprazole sodium (Protonix), rabeprazole (Aciphex) • more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate • St. John’s wort (Hypericum perforatum) If you are taking COMPLERA you should not take other HIV medicines or other medicines containing tenofovir (Viread, Truvada, Stribild or Atripla); other medicines containing emtricitabine or lamivudine (Emtriva, Combivir, Epivir, Epivir-HBV, Epzicom, Trizivir, Atripla, Stribild or Truvada); rilpivirine (Edurant) or adefovir (Hepsera).

In addition, tell your healthcare provider if you are taking the following medications because they may interfere with how COMPLERA works and may cause side effects: • certain antacid medicines containing aluminum, magnesium hydroxide, or calcium carbonate (examples: Rolaids, TUMS). These medicines must be taken at least 2 hours before or 4 hours after COMPLERA. • medicines to block stomach acid including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine HCL (Zantac). These medicines must be taken at least 12 hours before or 4 hours after COMPLERA. • any of these medicines: clarithromycin (Biaxin); erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone), fluconazole (Diflucan), itraconazole (Sporanox), ketoconazole (Nizoral) methadone (Dolophine); posaconazole (Noxafil), telithromycin (Ketek) or voriconazole (Vfend).

• medicines that are eliminated by the kidneys like acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex) and valganciclovir (Valcyte).

COMPLERA.

A complete HIV treatment in only 1 pill a day.

COMPLERA is for adults who have never taken HIV-1 medicines before and have no more than 100,000 copies/mL of virus in their blood.

Ask your healthcare provider if it’s the one for you.

COMPLERA NEW ART 4/C These are not all the medicines that may cause problems if you take COMPLERA. Tell your healthcare provider about all prescription and nonprescription medicines, vitamins, or herbal supplements you are taking or plan to take.

The most common side effects reported with COMPLERA are trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression. Some side effects also reported include vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles) and pain.

Before taking COMPLERA, tell your healthcare provider if you: liver problems, including hepatitis B or C virus infection, or have abnormal liver tests • Have kidney problems • Have ever had a mental health problem • Have bone problems • Are pregnant or planning to become pregnant. It is not known if COMPLERA can harm your unborn child • Are breastfeeding: Women with HIV should not breastfeed because they can pass HIV through their milk to the baby. Also, COMPLERA may pass through breast milk and could cause harm to the baby

This is not a complete list of side effects. Tell your healthcare provider or pharmacist if you notice any side effects while taking COMPLERA, and call your healthcare provider for medical advice about side effects.

• Have

COMPLERA can cause additional serious side effects: or worsening kidney problems, including kidney failure. If you have had kidney problems, or take other medicines that may cause kidney problems, your healthcare provider may need to do regular blood tests.

• 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 need 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 additional tests to check your bones.

• Changes in body fat can happen in people taking HIV medicine.

• Changes in your immune system. 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 new symptoms after starting COMPLERA. • New

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

Additional Information about taking COMPLERA: • Always take COMPLERA exactly as your healthcare provider tells you to take it.

• Take COMPLERA with food. Taking COMPLERA with food is important to help get the right amount of medicine in your body. (A protein drink does not replace food. If your healthcare provider stops COMPLERA, make certain you understand how to take your new medicine and whether you need to take your new medicine with a meal.)

Stay under the care of your healthcare provider during treatment with COMPLERA and see your healthcare provider regularly.

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

Learn more at www.COMPLERA.com

Brief Summary of full Prescribing Information

•

COMPLERA® (kom-PLEH-rah) (emtricitabine, rilpivirine, tenofovir disoproxil fumarate) 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 HIV (Human Immunodeficiency Virus) medicine that is used to treat HIV-1 in adults – who have never taken HIV medicines before, and – who have an amount of HIV in their blood (this is called ‘viral load’) that is no more than 100,000 copies/mL. Your healthcare provider will measure your viral load.

(HIV is the virus that causes AIDS (Acquired Immunodeficiency Syndrome)).

•

COMPLERA contains 3 medicines – rilpivirine, emtricitabine, tenofovir disoproxil fumarate – combined in one tablet. It is a complete regimen to treat HIV-1 infection and should not be used with other HIV medicines.

•

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

•

COMPLERA does not cure HIV infection or AIDS. You must stay on continuous therapy to control HIV infection and decrease HIV-related illnesses.

•

Ask your healthcare provider if you have any questions about how to prevent passing HIV to other people. Do not share or re-use needles or other injection equipment, and do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal fluids or blood.

Who should not take COMPLERA? Do not take COMPLERA if: • your HIV infection has been previously treated with HIV medicines.

•

you are taking any of the following medicines: – anti-seizure medicines: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal); phenobarbital (Luminal); phenytoin (Dilantin, Dilantin-125, Phenytek) – anti-tuberculosis (anti-TB) medicines: rifabutin (Mycobutin); rifampin (Rifater, Rifamate, Rimactane, Rifadin); rifapentine (Priftin) – proton pump inhibitor (PPI) medicine for certain stomach or intestinal problems: esomeprazole (Nexium, Vimovo); lansoprazole (Prevacid); dexlansoprazole (Dexilant); omeprazole (Prilosec, Zegerid); pantoprazole sodium (Protonix); rabeprazole (Aciphex) – more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate – St. John’s wort (Hypericum perforatum)

•

If you take COMPLERA, you should not take: – Other medicines that contain tenofovir (Atripla, Stribild, Truvada, Viread)

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 – have stomach pain with nausea (feeling sick to your stomach) or vomiting – feel cold, especially in your arms and legs

– Other medicines that contain emtricitabine or lamivudine (Combivir, Emtriva, Epivir or Epivir-HBV, Epzicom, Trizivir, Atripla, Truvada, Stribild) – rilpivirine (Edurant) – adefovir (Hepsera) What should I tell my healthcare provider before taking COMPLERA? Before you take COMPLERA, tell your healthcare provider if you: • have or had liver problems, including hepatitis B or C virus infection, kidney problems, mental health problem or bone problems •

– feel dizzy or lightheaded 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)

are breast-feeding or plan to breast-feed. You should not breastfeed if you have HIV because of the risk of passing HIV to your baby. Do not breastfeed if you are taking COMPLERA. At least two of the medicines contained in COMPLERA can be passed to your baby in your breast milk. We do not know whether this could harm your baby. Talk to your healthcare provider about the best way to feed your baby.

– loss of appetite for several days or longer

Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements.

– nausea

•

– stomach pain •

are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn child.

Pregnancy Registry. 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.

– have a fast or irregular heartbeat •

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 let your COMPLERA run out. 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.

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.

COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works, and may cause serious side effects. 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 infection.

The HIV virus in your body may become resistant to COMPLERA or other HIV medicines that are like it.

Especially tell your healthcare provider if you take: an antacid medicine that contains aluminum, magnesium hydroxide, or calcium carbonate. If you take an antacid during treatment with COMPLERA, take the antacid at least 2 hours before or at least 4 hours after you take COMPLERA.

•

•

•

a medicine to block the acid in your stomach, including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine hydrochloride (Zantac). If you take one of these medicines during treatment with COMPLERA, take the acid blocker at least 12 hours before or at least 4 hours after you take COMPLERA.

•

trouble sleeping (insomnia)

•

abnormal dreams

•

headache

•

dizziness

•

diarrhea

•

nausea

•

rash

any of these medicines (if taken by mouth or injection):

•

– clarithromycin (Biaxin)

tiredness

•

depression

– erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone)

Additional common side effects include:

– fluconazole (Diflucan)

•

vomiting

– itraconazole (Sporanox)

•

stomach pain or discomfort

– ketoconazole (Nizoral)

•

skin discoloration (small spots or freckles)

– methadone (Dolophine)

•

pain

– posaconazole (Noxafil) – telithromycin (Ketek) – voriconazole (Vfend) •

The most common side effects of COMPLERA include:

medicines that are eliminated by the kidney, including acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex), and valganciclovir (Valcyte)

What are the possible side effects of COMPLERA? COMPLERA can cause serious side effects, including: • See “What is the most important information I should know about COMPLERA?” •

New or worse kidney problems, including kidney failure, can happen in some people who take COMPLERA. Your healthcare provider should do blood tests to check your kidneys before starting treatment with 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

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 or pharmacist.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 (1-800-332-1088).

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 that includes rilpivirine tablets, the rilpivirine tablets should be taken only with a meal.

•

Do not change your dose or stop taking COMPLERA without first talking with your healthcare provider. See your healthcare provider regularly while taking COMPLERA.

•

If you miss a dose of COMPLERA within 12 hours of the time you usually take it, take your dose of COMPLERA with food as soon as possible. Then, take your next dose of COMPLERA at the regularly scheduled time. If you miss a dose of COMPLERA by more than 12 hours of the time you usually take it, wait and then take the next dose of COMPLERA at the regularly scheduled time.

•

Do not take more than your prescribed dose to make up for a missed dose.

– 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 additional tests to check your bones.

•

Changes in body fat can happen in people taking HIV 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 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 new symptoms after starting your HIV medicine.

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 2013

COMPLERA, the COMPLERA Logo, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, TRUVADA, VIREAD, and VISTIDE are trademarks of Gilead Sciences, Inc., or its related companies.

ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. ©2013 Gilead Sciences, Inc. All rights reserved. CPAC0041 07/13

NewsBreak

Putting Health First Call it evolution or revolution, but healthcare reform is being rolled out and enrollment in the new health insurance marketplace is upon many of us. Millions of newly insured individuals—including the 300,000 newly insured people who are HIV-positive—will be able to benefit from increased access to care.

Healthcare and insurance providers and organizations are prepping to help individuals understand the changes, like expanded protections for people with pre-existing conditions and new subsidies to help individuals and families earning between 100–400 percent of the Federal Poverty Level pay for their insurance premiums. But individuals need to add their voice, as well, about their health and healthcare access needs.

The nonprofit organization HealthHIV recently conducted its first HIV Consumer Survey to help guide the goals and objectives of a national advocacy coalition called Pozitively Healthy, launched by HealthHIV and a national steering committee (A&U’s editor in chief and publisher, David Waggoner, is a founding co-chair). The results are in. Here’s a snapshot of the survey results: • Fifty-seven percent of HIV consumers have been aware of their status for eleven years or longer • Forty-eight percent cite depression and forty percent cite anxiety as the most common co-occurring conditions • Seventy-three percent indicated that HIV-associated stigma is the most common challenge they experience in living with HIV • Forty-eight percent report that financial issues are the number-one barrier to getting care These results show that there’s more work ahead to improve our health and further increase access to quality and affordable healthcare services. So stay tuned. HealthHIV will release the full survey results in next month’s issue of A&U. For more information about the survey or HealthHIV, please visit www.healthhiv.org.

Sometimes the line between fact and fiction becomes blurred, allowing doubt and disbelief to taint the actual truth. Yet, the truth eventually comes out, even if sometimes it takes a tragedy to set it free. And often art, in any form, provides a vehicle for the truth to travel around the world.

World-premiering at the 2012 Berlin International Festival, Berlinale, Call Me Kuchu captures such a truth and the tragedy behind it. Directed

by Katherine Fairfax Wright and Malika Zouhali-Warrall, and distributed by Cinedigm, the award-winning documentary offers a portrait of the young but determined Ugandan LGBT community, through stories of LGBT individuals and equal rights activists. At the center of the story is David Kato, the first openly gay Ugandan, and his life, until it was taken away by a murderer, and the legacy he left behind. “[Call Me Kuchu] is a clear window into what spring-boarded the [LGBT] movement and what is now being carried on,” Ugandan-American actor and playwright Ntare Mwine [A&U, December 2012] comments. “For me, the film is like a torch that’s been passed forward, because at the time no one knew what was happening. That’s what made it so powerful in the States, [because] sometimes you actually have to see the hate, see the resistance firsthand, to have change embezzle these doubts.”

The tragedy and truth uncovered by Call Me Kuchu have a two-fold effect—on one hand there’s the Ugandan LGBT community and its fight for justice (“kuchu” is a term some translate as “queer,” yet a term embraced and used by Ugandan LGBT individuals to identify themselves as members of one united community); on the other hand there’s the spread of HIV/AIDS in Uganda re-enabled by an anti-gay bill yet to be voted into law. As exposed in the documentary, the so-called “kill the gays” bill “leave[s] HIV to roam around.” The bill fuels the spread of HIV by forcing individuals back into the closet, as well as corrective rapes and threats to LGBT individuals and their supporters. Maybe most troubling is a section of the bill that deals with “aggravated homosexuality,” and applies to individuals living with HIV/AIDS, among others. In the original anti-gay bill, the punishment for “aggravated homosexuality” was death. Later on, the death penalty was taken off the table, but imprisonment for life remained as an option. In response to this very anti-gay bill, some Western countries have threatened to cut off aid to Uganda, including ARV medications.

As portrayed in the documentary, the Ugandan AIDS situation can become dire, as can the fate of the country’s LGBT community. The story of Call Me Kuchu is powerful, brutally honest, but also inspiring, offering an unforgettable lesson in and about life, and also about our purpose in life. In many ways the documentary brings the story of “kuchus” home to us, thus helping us focus on our own contributions to better the world.

Call Me Kuchu opened this June in New York City and Los Angeles. More information about the documentary is available online, at www.callmekuchu.com.

—Reporting by Alina Oswald Alina Oswald is a writer, photographer, and the author of Journeys Through Darkness: A Biography of AIDS. Contact her at www.alinaoswald.com.

14

A&U • august 2013

photo courtesy Cinedigm

Call Me Kuchu

SPRING INTO LOVE!

P zMatch.c m HIV+ Owned Since 1998

ROBERT LEVITHAN

16

Mastery Workshops and speaks publicly as a man living with HIV/AIDS. Robert is presently writing his memoirs.

These quotes leapt out at me while reading The New 60: • “I am convinced that at least 80% of our sexual attractiveness comes from how we feel about ourselves.”

• “To age gracefully, we need to balance health and vanity.”

• “Ignorance is bred by fear and reinforced by internalized shame.”

• “Fake strength is mired in machismo and a façade of toughness, which is overcompensation for fear.”

Bobby and I met years ago through a mutual friend when we were both performing at different venues in Venice, Italy. (Yes, I was a Broadway gypsy in my former life!) We instantly ignited. Today we’re in Manhattan grabbing a bonhomie Sunday brunch at Hundred Acres on MacDougal Street.

Ruby Comer: Boy, where do you get your endless enthusiasm, optimism, and motivation?! It’s so infectious but sometimes hard to keep up….

Robert Levithan: I was brought up to see the glass as

neither empty nor full, but overflowing. I have learned that life is meant to be full of difficulty and grace, and how I deal with it is my opportunity. As Sally Fisher, AIDS advocate and founder of Intersect, said in The AIDS Mastery Workshop, “The quality of life is not determined by the circumstances, but by how we respond to them….” I became an activist to survive and it has given my life meaning. [He looks off for a moment.] It was my father who showed me that enthusiasm, hard work, and generosity are gifts to all. He’s a hero of mine.

Sounds like a super dad. In your book you say, “Being alive is the magic.” Can you elaborate?

Being alive provides the time and space to grow, to work, and to have a life. As someone who never saw a life after fifty, being in my sixties is magical!

ruby illustration by Davidd Batalon; photo by KarenFuchs.com

R

obert Levithan is a man after my own heart—smart, funny, uplifting, and dynamic.

This adventurer has had quite a life! Though a die-hard New Yorker, he’s been a performance artist in Italy, a Shakespearean actor in Venezuela, theater and concert producer, screen actor and dancer, waiter in Caracas, sound engineer in Montreal—and even a New York cabbie. Today he lives in New York’s Soho district and is now a psychotherapist in private practice, and an author. His book, The New 60: Outliving Yourself and Reinventing a Future was released last year.

It is not just for Old Farts! Trust me, you young’uns will benefit from this guy’s wit and wisdom. His words may save you from a lot of unnecessary pain.

HIV-positive for over thirty years, Robert has lost friends, lovers, clients, acquaintances, and a family member to the epidemic. He’s long been an activist and currently facilitates groups at Friends In Deed. He’s been affiliated with the organization for eighteen years and was co-chair of its board for seven years. He writes frequently for The Huffington Post and pens a regular sex advice column, “Bad Behavior: The Sexual Ethicist with Bobby Levithan.”

The New 60 is a compilation of these columns. He travels around the country leading AIDS

continued on page 44

A&U • AUGUST 2013

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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.

I’m sure you get lots of messages, but wanted to say thanks for your videos and really good support they have given me. Every little bit helps. People like you are so needed. I got into the “system” by a surprise HIV diagnosis a month ago; it’s been tougher than I thought but I’m stronger than I expected so it’s okay.

You’re one of three people who have put really good things online. It is strange almost because through work I come across stories about HIV and things all the time.

I work in the Web hosting department for a U.S. TV/media company so I will hopefully be over in the U.S. soon, and, actually, I have a “brother” (from another mother) in L.A., where I go a lot. I love how the U.S. has changed attitudes and hope to be there for good one day. London is okay but getting too crowded and, being Swedish, I miss nature and the ocean.

I do have just a quick question; maybe there is no easy answer.

Suppose one meets a guy and everything goes really well but you need to tell him about the little blue devils (you know what I mean).

Ugh, I should have said it upfront.

One of my mates said, “You tell and if he doesn’t understand then he won’t be right anyway.”

—Jonas London, United Kingdom

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Your friend is right. I think the proper thing to do in these matters is to disclose, especially if you’ve already been intimate.

But why not disclose before you’re intimate so that he knows what he is getting himself into?

Not saying that having a partner who is HIV-positive is an issue, but to start off open and honest about your status is, in my opinion, the right thing to do.

There is also a time and place to do everything. I suggest that you may want to feel around the question about HIV and see if he is okay with it by either coming straight out and telling him or being very cautious. There are many different ways to tell someone but be careful, especially if you have already been intimate. I don’t know what the laws are in the U.K. but we here in the United States have what we call HIV criminalization laws. These laws persecute anyone who doesn’t tell their sexual partners that they themselves are HIV-positive.

If he doesn’t understand that, then don’t worry about it; I know there are plenty of men in the sea (or the English Channel) for you.

Also make sure you take care of yourself and go to the doctor.

A new HIV-positive diagnosis can make people feel like HIV is something they can write off.

Take care of yourself first. You

cannot take care of anyone unless you take care of yourself first.

[UPDATE] Hey Jonas, How’s it going with the HIV diagnosis and did my advice help?

—Justin Justin, People get complacent with HIV and I think it’s no big deal but in my case it caused early inflammation of the brain. I have had terrible headaches for the past months and they finally put me on meds now and hopefully they will improve. I nearly panicked at the waiting room for the meds, realizing this is really happening, and, when I took them for the first time, it really, really sunk in because in the back of my head there was always a slight denial that maybe I didn’t have it.

Now I feel great relief; this thing is being taken care of and I can live my life again.

Now about the boyfriend: I told him and he is fine and wants to marry me. Thank you for asking me it means a lot. The only problem is I was going to leave London—now I’m rethinking all of it. I know it’s silly giving up my dreams of L.A. for a man but I think he’s worth it.

—Jonas A&U • august 2013

photo by Don Harris © Don Harris Photographics, LLC. all rights reserved

Justin,

viewfinder

No Stupid Questions

asking in the spirit of understanding need not divide us

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applies to people with HIV and AIDS, as well. I’ve seen countless instances where someone with HIV or AIDS gets offended when a potential partner asks him if he will contract the virus if they exchange saliva. The person who has HIV or AIDS becomes offended, and storms off hurt.

But the date may not know what HIV is, or the fact that it does not have a cure.

A lot of people say ignorance is bliss, but it’s also a divider. Simple curiosity can ruin a good friendship or potential relationship. That divide grows because we are easily offended by questions that we once had to ask ourselves. When I was learning the bus route for my daily commute, I wondered if it would even work, me having to travel on the bus for field reporting.

I’ve asked myself the same question my restaurant date posed: “How am I going to be a journalist?” But by being patient, and persistent, I figured out the answers through trial and error, and by learning from my past mistakes.

If I would have let my own questions offend me, then I wouldn’t have figured out the answers. I don’t have HIV but I had to ask the above question in order to find out whether you could contract HIV

from a small exchange of saliva. I now know how to better do my job effectively because I had to find the answers.

I couldn’t let those two questions go unanswered. If I remained ignorant, how blissful would I be? The information helps me, and allows me to help someone else in the future.

I don’t think anyone should remain in the dark if there is an answer to a question. Answers, in all their simplicity, sprinkle awareness. Not far behind awareness comes understanding, and beyond that is acceptance. An answer to a seemingly offensive question doesn’t just satisfy curiosity, it opens up a door to understanding.

There are a lot of other positive things behind that door. Some effects are immediate, such as inclusion, and others are a ways off, such as the advocacy that is born from awareness.

As an African-American, my date lives in a world I’ll never completely understand because I’ve never lived through the discriminatory history he has, but I can ask him questions, and with each answer I begin to form some understanding. With every answer I give about my adaptive life, we’re coming together in a way that people who are easily offended won’t be able to do for a very long time. My date understands me now, and that’s the most valuable education I could ever give.

Robert Kingett is a blind journalist specializing in audio description, adaptive sports, and disability news. His essays have been published widely in magazines, blogs, and read on radio stations across the country and abroad. He has been published in several anthologies. He’s the chief writer for America’s Comedy, as well as a columnist for Truth Is Cool. His most popular column has been “Kingett Reads Fifty Shades of Grey.” He holds several editing jobs. He is a strong supporter and advocate for LGBTQ rights and has raised a great deal of funds for HIV and AIDS research.

A&U • august 2013

illustration by Timothy J. Haines

T

he restaurant bustles with activity as my date and I sit opposite each other, getting to know each other. To my immediate right, a woman talks to her mom on her phone about the baseball game she missed. Dishes clatter in the kitchen behind me, as different aromas waft through the restaurant.

Men and women pass making their way to their tables, and then my date’s cologne turns my gaze back to his ebony-accented voice.

We’re chatting jovially, our laughter escalating and periodically drowning out the conversations around us. Occasionally people stop and, I’m sure, stare at this interracial, gay couple. As our meals arrive, we get around to the topic of careers. He’s a teacher, but has a hard time believing that I can be both blind and a journalist.

Instantly I become angry, and I’m ready to blast this rude, insensitive sighted person away. But then I realize that he’s never seen adaptive technology; never seen a Braille display; and never seen a screen reader before.

Taking a deep breath and putting a huge smile on my face, I explain how I’m both a journalist and a person who is blind. The reason I chose to answer all of his questions and those of many others on this subject—instead of following my gut instinct to be sarcastic—is that they may know nothing of my world, but they will learn if I patiently teach them.

Whenever I hang around people who are blind, we make insider jokes about speech synthesizers and other assistive technologies that people with sight have no clue about. Sooner or later, we get to talking about people with sight’s vast lack of knowledge around blindness. There’s a lot of anger that gets expressed.

Among people with disabilities and health conditions, some get angry when they’re asked to educate others, which

+

Positive Paul Schulz & Christian Lütjens Help Us Visualize Gay Male History

by Chael Needle

Pictures P

ositive Pictures: A Gay History (Bruno Gmünder) assembles an archive of images that asks us, when reflecting on contemporary gay realities, to see AIDS differently—the lifebeat within the loss, the dream within the nightmare, the epiphanies within the epidemic. “...[N]othing since Stonewall has changed gay men’s lives as much as HIV. We live differently, love differently, have different sex. We act differently towards one another, and we approach our own selves differently,” write authors Paul Schulz, deputy editor in chief of Männer magazine and co-editor in chief of M+ magazine, and Christian Lütjens, editor at large at Männer and co-editor in chief of M+, in their introductory raison d’être. The authors also seek to honor those who have died and reignite the living, writing: “There’s an Asian proverb that says we make the dead live again when we say their names. So we’re saying them in many different ways and letting others say them in many different voices, representing various positions. And we also wanted to make this book because so many of us are still living and have lots of interesting things to show and tell.”

Positive Pictures engages a chronology that covers the 1980s, 1990s, and 2000s. Within each timelined section, inaugurated by portraits and companioned by images and essays, subdivisions are tagged Art, Movement, Porn & Sex, Medicine, and Entertainment.

Interviews with film director Rosa von Praunheim, porn director Chi Chi LaRue, and advocate and model Jack Mackenroth [A&U, November 2010] also help to create linkages among the lived experiences of those within the gay diaspora that was at first hardest hit.

Bringing together activists Larry Kramer and David Kato, actors Rock Hudson and Erik Rhodes, artists Steven Arnold and Joe De Hoyos, musicians Klaus Nomi and Andy Bell, advocates Edwin Cameron and Timothy Ray Brown, among others, Positive Pictures uncovers diverse intellectual, sensual, emotional, and aesthetic expressions across pamphlets, posters, paintings, photos, quilt panels, film stills, and more. With a bilingual text in English and German, the book’s

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A&U • AUGUST 2013

A&U Gallery

prose and visuals are as inspiring as they are dazzling.

A&U had a chance to speak with the Germany-based authors via e-mail.

Chael Needle: “To look at a thing is very different from seeing it”—you introduce the book with this quote from Oscar Wilde. Why do you feel it is important to emphasize the visual? Is it related to how visible the gay community has become as a result of HIV/AIDS and our response to HIV/AIDS? Paul Schulz: In one word: Yes. HIV/ AIDS were (and are) catalysts for the visibility of gay men (and women and transgender individuals) everywhere. The virus was (and is) an enormous thread for LGBT communities around the globe and that prompted an explosive reaction from activists and artists in the western world and still does so today in many other countries.

In the beginning of the 1980s, gay men didn’t have time to be afraid anymore, because many of us were dying or very sick. Things had to be done, the time for patience and polite requests to the establishment was over. Within five years, there were literally tens of thousands of AUGUST 2013 • A&U

visual, literary, or other artistic reactions to HIV and AIDS. Art merged with political activism as it had rarely done before in human history. The result was an artistic language that incorporates the political, that asks questions and has opinions, instead of being merely beautiful, sexy, funny, or pleasing to the eye. All these aspects are there, but combined with a sense of urgency, that had not been seen before.

The result was completely new and at the same time very, very gay. All NGOs that are admired for their drastic imagery today learned from the fight against HIV/AIDS how to do that. PETA or Greenpeace would not use the kind of visual style they have, if HIV/AIDS activists had not invented that language. The “die-ins” of the Sisters of Perpetual Indulgence or everything ACT UP did not only change the face of the gay movement, they changed the entire visual make-up of political activism.

We’ve tried to illustrate that development in Positive Pictures. At the same time we hope the book can help to educate younger generations about the heroics of their gay forefathers.

Christian Lütjens: In addition to this, the quote is a perfect metaphor for the gap between pictures that are most often asso-

Shocks against ignorance: At “Die-ins,” ACT UP protestors pretended to be dead in the streets. Hier am 24. März 1987. (Photo: Archiv Rosa von Praunheim)

ciated with HIV and AIDS and what the reality looks like. That was a subject that we dealt with all the time while working on this book. So many people said: “What?

You’re working on a book about HIV? What a depressing subject. People don’t want to look at people dying, do they?”

That’s a common and understandable reaction. But it’s superficial as well. It’s just a first “look at things.” Not every picture dealing with HIV and AIDS is dealing with death. On the contrary. There is so much lust for life in so-called HIV art. You need to dig deeper to “see” this. That’s what we do with this book.

In 1980s’ “Love Vigilantes” section, you mention images that were able to show “the momentous scope of the events taking place,” like the Challenger explosion and people dancing on the Berlin Wall, in contrast to the absence of a definitive AIDS-related image at that time. In light of this, did choosing images for the book seem like a daunting task?

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Left: “Porn star Al Parker dies of complications from AIDS.”—entry under 1992 on one of the book’s timelines (Al Parker in Champs 1980, Falcon Studios) Bottom: “Gay porn has helped lead the way in showing gay men how to use condoms,” says Chi Chi LaRue. She has never shot a condom-free movie. (Photo: C1R.com)

even more.

Which image in the book has the most resonance for you? Why? Paul: I love the two pictures of a German artist group called NURR we have in the book. They are part of a larger group of pictures called “Light Infection” and are at the same time very sad and very playful and just move me.

Christian: The work of BEWEGUNG NURR is a favorite of us both. For me there is as well the picture of the empty bed by Felix Gonzales-Torres. It’s such an impressive symbol for that “presence of absence” aspect which came up in the nineties when so many people had died already.

Christian: Not at all. That’s a point directly connected with what I just said.

The absence of “the one” picture illustrating HIV and AIDS was a chance to have a closer look at the imagery related to the subject. I’d say it was more challenging than daunting. And it was fun as there was still so much to discover.

Paul: Only in the end [as] we had so many things we wanted to show and we had so many pictures we wanted to have in the book, that we did not know the copyright holder of. There are many, many pictures that are not in the book for that reason, because the artist was dead and we could not find out who to get permission from to use them. Frustrating.

But the process was also wonderful: We discovered and rediscovered so much great art and many wonderful artists during our initial research, it wasn’t exactly daunting but a little overwhelming. Every day, for months on end, we dug up pictures that “are just unbelievable.

24

People need to know this stuff.

And why don’t we know this already?” Because nobody had told us. Because many of those pictures are not in the canon of gay imagery anymore. Every time we showed gay men in their twenties what we had, they were amazed at what had been done, at the audacity of what artists had tried to do.

And that made us want to tell people about it

You write: “This book exists because we wanted to know how we got where we are.” What did you learn, or how did your thinking change, about gay male history in the process of compiling the book?

Paul: We talked about that a little already. Writing and editing the book has reaffirmed my belief that gay men can literally change the world if they want to, because they’ve done it at least once already and do it again every day, in many countries. It was wonderful to comprehend a little more what fighters we can be, how loud, how direct, how unwavering in our need to be heard and understood. I love how proud the work on the book made me to be a gay man, because of what we have achieved as a group when it comes to HIV/AIDS. Christian: Working on this book was a lesson about how important solidarity is to move things in life.

The book seems to be about the past as much as it is about the future.

Do you feel there is a A&U • AUGUST 2013

A&U Gallery

danger that our history will be forgotten?

Or that we might think we can one day close the book on this chapter of history?

Paul: I think we need to start a project that is much larger than this book or A&U magazine to save all that has been written and made by artists during the AIDS Crisis.

Many of the books are out of print, much of the art is not very well taken care of but rotting away in attics and garages. That has to change. All of that is gay history and it is vital to preserve it, so future generations can see it and understand it. I hope to live to see the day when there is a cure for AIDS, but I don’t think we can ever fully close the book on this chapter artistically, the world has been changed by it and gay life will forever be different for it.

Christian: First question: Of course. People tend to forget things very quickly, especially if their situation is comfortable enough to not constantly be pushed to reflect on their roots and identity. For that reason it’s very important that there are institutions and publications to preserve our history. Second question: Maybe we can close the book on this chapter one day but we must not forget about it. It’s a part of gay identity and it will always be.

The book ends with, “It’s not 1984 AUGUST 2013 • A&U

Top: Director Rosa von Praunheim was cofounder of ACT UP Germany. His experiences as an activist were subject of the movie Fire Under Your Ass. (Photo: Archiv Rosa von Praunheim) Bottom: The boys and men of the I Know What I’m Doing campaign (Photo: Archive)

anymore. But Toto: we’re not quite home yet.” You could also say, then, that the end of the book is also a beginning. What do you hope that readers derive from the book?

Paul: A greater sense of gay history. A sense of pride of all that has already been done in the fight against HIV/AIDS, a sense of solidarity with those who are still

fighting today everywhere in the world.

And the idea that we also fight against the virus every time we do anything against homophobia anywhere on the planet.

Christian: It may sound pathetic but: If people recognize the importance of really living their own lives, defending their points of view and fighting for their rights after spending time with our book that would be perfect. We’re very concerned with imitating heterosexual lifestyles these days. From this point of view it’s even more important to look back in time from time to time.

Is there anything we have not addressed that you would like to address?

Paul + Christian: We want people to have fun with the book and we hope they do. We made it as beautiful as we could.

For more information about ordering Positive Pictures, visit the publisher’s Web site at: www.brunogmuender.com.

Chael Needle is Managing Editor of A&U.

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CREATIVE COLORS

Celebrity Hair Stylist Chaz Dean Knows a Few Things About Richer Shades of Compassion, Highlighting Charitable Causes & Permanent Giving

by Dann Dulin

Photographed Exclusively for A&U by Nancy Perry

C

haz Dean named his product line WEN—that’s “new” spelled backwards. Several years ago he also created “Team WEN in Spirit,” which is made up of his employees, friends, and clients who band together for the Los Angeles AIDS Walk.

In three years they’ve raised nearly $100,000. “Every year our team grows bigger, and our energy and our goals get higher. We continue to support and encourage others to get involved, too,” Chaz says proudly.

Chaz also sponsors the AIDS Project Los Angeles Oscar party, usually held at the Abbey in West Hollywood and hosted by Pauley Perrette. In addition, Chaz blows it out for the Pediatric AIDS Foundation by donating products, contributing financially, and volunteering his time.

A photographer before moving on to cosmetology school, he donates his photography to fundraisers, and he often opens his tranquility-infused salon, The Chaz Dean Studio, for charity events.

Several years ago Chaz was featured on Bravo’s docu-reality series, Flipping Out, when designer Jeff Lewis completely revamped his Studio. He took Chaz’s three 1920’s-style Hollywood bungalows and turned them into a private sanctuary, creating a soothing, illuminat-

26

ing, stylish, and organic ambiance.

Think Sedona—among the bliss and solitude of the Red Rocks. (It’s likely when you visit his studio that three peppy faces will greet you: Spencer, Hunter, and Ella, his Labradors.) WEN products are also holistic and natural. Chaz has not used commercial shampoo on himself nor on his clients for twenty years!

After moving to Los Angeles in the mid-eighties, Chaz developed the WEN concept, a new approach to hair care. WEN was recently launched internationally, along with WEN Pets & WEN Kids. He’s currently working on new seasonal cleansing conditioners. This entrepreneur continually cuts away at imperfection to improve his product line. “I constantly have ideas in my head,” states Chaz, a fervent fan of Charlie’s Angels, his favorite television show while growing up.

And it isn’t too startling to learn that one of the “Angels,” Farrah Fawcett, who became iconic for her elaborate, feathered, sweeping hairstyle, was his preferred angel.

Chaz not only splashes various hues on tresses, but he brightens lives through his humanitarian efforts. The ardent cook, avid hiker, and yoga-practicing Chaz is dedicated and passionate about his A&U • august 2013

career—and finding a cure for AIDS. Dann Dulin: What attracted you to Charlie’s Angels?

Chaz Dean: Those “Angels” were beautiful, hot, and sexy!

Among your clients are Charlize Theron, Lisa Edelstein, and Ben Foster. Which celebrity client have you had the longest?

Nicollette Sheridan was my first celebrity client. When she came in I got her off bleaching her hair and now she’s a bleachfree, healthy blonde. She referred people from 90210 and it was like the domino effect from there.

Tell me about the process of naming your products WEN. Well, I actually spent many hours putting up three letter words to a mirror to see what looked right. I wanted a word that had a Zen-like feel and yet not really be defined. WEN Hair & Body Care, as a brand, is a natural way to care for your hair and people now associate WEN with healthy beautiful hair…which is great.

What impact has the epidemic had on you?

When I moved to Los Angeles at the age of twenty-one, I met my landlord.

Sadly, he was hospitalized and passing away from AIDS. It was my first encounter with the disease and it had a huge impact on my life. I have lost others in the battle of AIDS. Early on, the epidemic taught me to be extra cautious. It was very scary….

As a gay man, you certainly are aware of the rise in HIV infection among the younger generation. Any idea how we can combat that?

Raising awareness through social media. It’s bigger than ever, especially among young people. I think that targeted, dramatic social campaigns have an impact by educating and encouraging others to speak out.

Being single, when do you think one should broach the subject of HIV/AIDS when dating?

Not necessarily on the first date. I think when you realize there’s a connection and the relationship is moving forward, the conversation should happen.

It’s so important to be tested for HIV! What motivates you to give?

I have always given of my time. Now that I am able to give more, I do, and I hope to inspire others. I encourage

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my staff to volunteer as well. I offer my employees one paid day every month to volunteer at a charity/foundation of their choice. This is something I encourage all employers to do.

Who do you count among heroes in the epidemic?

Those friends that I’ve lost are not only heroes but everyone fighting for a cure and raising awareness for the cause.

What individual has inspired you the most?

Rev. Dr. Della Reese Lett has inspired me tremendously and helped me become who I am today. She is such an amazing individual who teaches people to live a happy positive life. I am very grateful for everything she has taught me and for her guidance. Oprah Winfrey and Dr. Wayne Dyer have also inspired me. What they all have in common is that they are so uplifting, inspirational, and motivational.

A&U • august 2013

Whom would you like to meet that you haven’t yet?

I would love to meet Madonna. She is one who has always encouraged people to follow their dreams and visions and not let anyone get in their way. She has done that with her own life and she inspires others to do so as well. I would also like to meet Pink. I saw her show at the Staples Center and she was amazing! august 2013 • A&U

What is at Chaz Dean’s core?

I like to keep the energy around me positive, to create a peaceful, healthy environment for everyone. I try my best to eliminate negativity and give everyone around me a positive experience. Maintaining a healthy lifestyle is very important to me. I want everyone surrounding me to have the benefit of a healthy lifestyle as well.

For more about Chaz Dean, log on to his Web site at: www.chazdean.com.

For more information about photographer Nancy Perry, log on to www.nperrystudio.com.

Dann Dulin interviewed Scott Bakula for the June cover story.

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Crowning Glory As Miss Universe, the World’s Top Beauty Queen, Olivia Culpo Champions HIV/AIDS Awareness and Female Empowerment

O

n December 19, 2012, Olivia Culpo from Cranston, Rhode Island, was named the most beautiful girl in the world. As nearly a billion viewers watched the Miss Universe pageant on television, she beat out eighty-eight gorgeous contenders from across the globe to become the first American in fifteen years to win the coveted title. Culpo accepted the title with her signature poise and composure—and maybe a hint of disbelief. “I’m dreaming, it’s a dream,” she said.

“I couldn’t be happier. This is such an honor.” The twenty-oneyear-old former college student and model is much more than just a pretty face. She’s personable, down-to-earth, and the perfect spokeswoman to promote HIV/AIDS prevention and motivate young women. “What I really try to get across is my story,” she says, “that you can do anything you want to do no matter how out of reach it seems.”

Culpo’s story is about a bright, talented, hard-working young woman who loves her family and appreciates the value of education. A small-town girl from a large Italian-American clan, she describes herself growing up as “a short, chubby nerd.” The middle child of five, she was an honors student at St. Mary Academy Bay View, an all-girls Catholic school. Coming from a musical family (both parents are classically trained musicians), Culpo is a singer who took up the cello at age seven and has performed at Carnegie Hall and Boston Symphony Hall. “I spent most summers at

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music camp and I still spend a lot of time dedicated to music,” she tells A&U. In 2010, she enrolled at Boston University, where she made the dean’s list every semester. During her sophomore year, Culpo made a decision she never imagined would change the course of her life. “I was modeling and studying acting and communications and I knew I wanted to do something in front of the camera,” she recalls. “Over a free summer I decided to try the pageant thing.” She knew this was something that could sharpen her stage presence, and she ended up winning her first pageant—Miss Rhode Island USA 2011. She won that contest in a rented $20 dress with a hole in the back, and she began preparing for the next competition. Less than nine months later, she was named Miss USA 2012. When Culpo was crowned Miss Universe, she had to give up the responsibilities of Miss USA to assume the international title. Her meteoric rise to beauty pageant stardom was startling—even to the stunning titleholder herself. “One year ago I was carrying books to the library,” she notes. Now she’s a high-profile global ambassador making a meaningful contribution to society.

Aiming to empower young women to advance their careers and improve the lives of others, “The Miss Universe Organization wanted to strengthen the company’s cause alliances and provide a signature platform for each of the three national titleholdA&U • august 2013

photo by Fadil Berisha

by Chip Alfred

august 2013 • A&U

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ness, and Miss Teen USA tackles issues that all teenagers face today.” The organization facilitates another project helping HIV-positive Rwandan women living in poverty. The “trade-not-aid initiative,” Same Sky, is part of an international movement giving women the tools to become entrepreneurs and lead self-sustaining lives. Same Sky trains women in the art of beading to create fine fashion jewelry.

Encouraging them to take their beading skills to the local marketplace enables these women to provide financial support

A&U • august 2013

photo by Richard Harbaugh

ers,” Jackie Shahinian, public relations coordinator, explains. The joint venture, co-owned by Donald Trump and NBC Universal, is an umbrella organization for three pageants, Miss Universe, Miss USA, and Miss Teen USA. “As a global brand, the Miss Universe Organization sought to provide a voice to issues that affect people not only here in the U.S., but from around the world. Miss Universe raises awareness about HIV/AIDS prevention and education, Miss USA works to champion breast and ovarian cancer research and aware-

for themselves and their families.

Despite the life-altering humanitarian work of Trump’s pageant organizations, there has been some controversy involving former Miss USA winners and contestants. After Culpo won Miss USA, the billionaire entrepreneur and casino owner felt like he hit the jackpot. “You never know what you’re going to get and sometimes it can hurt the brand,” Trump told the New York Post. “With Olivia, we have a major star. What’s different about her is she’s really nice. It’s no act.”

Over the course of her one-year reign, Culpo racks up thousands of frequent flyer miles. She meets people from all walks of life, taking her ebullient optimism with her everywhere she goes, making a marked impression on girls and young women. “Olivia is not only a role model to millions of young women, but also a spokesperson lending her celebrity voice to spread awareness,” says Shahinian. “As a mirror image to her peers, they are able to relate to her and encourage others to spread awareness in their own communities.”

Collaborating with organizations including GMHC, AID for AIDS, YouthAIDS and the Latino Commission on AIDS, Culpo says, “We work with so many international charities. I can go to the home base where this great work is actually being done, which is very rewarding.” Each year the Miss Universe Organization welcomes establishing new alliances with nonprofits in the U.S. and abroad. “One organization that we are very proud to begin working with once again is the Elizabeth Glaser [Pediatric AIDS] Foundation,” says Shahinian. “Olivia’s love for young people and children makes her the perfect titleholder to bring awareness to the pandemic right here at home.”

Culpo addresses the issue of stigma associated with HIV/AIDS by focusing on clearing up misconceptions and shattering stereotypes. “With my title I’m able to influence people and inform them what the truth is behind HIV and AIDS. People living with HIV/AIDS are normal and they’re like any other person.

It’s just getting people to understand that,” she asserts. “You can break through any stigma. All it takes is awareness, and the more people we get involved, the greater an impact we can have.” During the Miss USA pageant, Culpo also had the opportunity to show her support for LGBT equality when faced with what was considered the most difficult question of the night: “Would you feel it would be fair that a

handout photos courtesy Miss Universe Organization L.P., LLLP

transgender woman wins the Miss USA title over a natural-born woman?” Culpo had no problem conveying her answer as she embraced the Miss Universe Organization’s decision last year to admit transgender contestants. “I do think that would be fair….today where there are so many people out there who have a need to change for a happier life, I do accept that because I believe it’s a free country.”

On her first international trip, Culpo spoke to an audience of young people in Indonesia. “In a Muslim country, it’s not exactly standard to be talking about safe sex and sex in general,” she acknowledges.

But being Miss Universe opens a lot of formerly closed doors. When asked if her message varies with each audience, she replies, “Maybe the delivery will change.

I want to make sure that everything I believe and everything that I say is 100 percent authentic. I don’t want it to change depending on what country I’m in. I want the same message to come across.” It was during this trip Culpo encountered the first embarrassing moment in her new role. “The most surprising thing happened,” she told Hollywood Life. “I forgot my crown at home. That was the most shocking moment of my life. I had just won Miss Universe, my first international trip, and I left my crown!”

With more trips under her belt, she always makes sure to pack her crown and she’s come to realize the influence Miss Universe can have. “For me it’s having this new perspective, having this amazing platform and being able to raise awareness for a number of causes, especially HIV and AIDS,” Culpo says. “It’s being able to communicate with a greater audience and have a real impact.

That is so special to me.”

For Culpo it’s also meant making some sacrifices. Miss Universe does receive a high-fashion wardrobe, a deluxe apartment at Trump Tower, the opportunity to attend countless high-profile events, and a one-year scholarship to the New York Film Academy. On the flip side, she has to put college on hold—at least for a year. With a hectic schedule of travel and speaking engagements, the currently unattached Culpo doesn’t have much time for dating either. And when she does, there’s that moniker that can be intimidating to the guys she meets. “They don’t see Miss Universe at first, and then there’s always that awkward moment when they find out, and you have to think, ‘I don’t know if they like august 2013 • A&U

me or they just think it’s cool so they can tell their friends they’re talking to Miss Universe.’ But to me I’m still just Olivia,” she remarks, “and I’m going to continue thinking that, instead of the title!”

With just a matter of months left until Culpo gives up the crown to her successor at the first Miss Universe pageant held in Moscow, she plans to continue what she’s been doing and not focus too much on her next move just yet. She appeared in a recent music video for “Amor,” a hit single by Russian pop sensation EMIN, and she plans to pursue a career in entertainment. Culpo sees children of her own

Top: Olivia speaks at the Elizabeth Glaser Global Champions of a Mother’s Fight Awards Dinner.

Left: Miss Universe volunteers at GMHC.

somewhere down the road as well. “I want to have a very big family! I came from a big family and I want to continue and carry on that tradition.” As she looks back on the last eight months, she has plenty of fond memories and a few pieces of advice.

For anyone affected by HIV, she believes the most valuable thing to remember is, “You’re not alone. There are people that do care and people that are fighting for you every day.” For young girls everywhere, she reiterates her mantra, “Anything is possible if you have the right attitude and you’re willing to work really hard. You can thrive and grow and learn from each other.”

Culpo finds her inspiration in her favorite actress of all time, Hollywood icon Audrey Hepburn, who stars in her favorite film, Funny Face. In the movie, Hepburn’s character, like Culpo, goes from geek to chic in the world of modeling. “She was beautiful on the outside but also beautiful

on the inside,” says the young woman with her own definition of what makes someone beautiful. “Beauty is found in the way you treat others.”

Looking ahead, Culpo hopes “the audience that I have now will continue to be engaged with everything that I’m doing. I’ve been able to have a lot of personal connections with people as a part of this work, and it’s something I will always remember.”

For more information about the Miss Universe Organization, visit www.missuniverse.com. Find out more about Same Sky at www.samesky.com.

Follow Olivia Culpo on Twitter @MissUniverse.

Watch Olivia in EMIN’s music video at www. youtube.com/watch?v=r-O8XRo60_E. Chip Alfred is an Editor at Large of A&U and a nationally published freelance journalist based in Philadelphia.

33

A GROWING LEGACY

[FICTION]

by Lisa Sandlin

Greyhound, 1984 (for Brian)

A

couple in the back row is smoking in the dark but Philip doesn’t; cigarettes can’t help anything. He only ever propped the Gauloise between middle and index fingers and puffed to appear less on the fringe. Besides, lethargy paralyzes him. His head sinks sideways onto the wadded jacket that once owned its own white satin hanger. His friends used to kid him about it. Philip, they said, would throw himself in a puddle so the Armani could walk across.

In Philip’s dream, Luis is reading Crime and Punishment, half-glasses slipping down his redone nose. Victor is bantering with Colin and with the blond waitress who sets before him a strawberry shortcake drenched in lethal red syrup. Victor gives Philip a what-can-you-do? smile and lifts his fork.

34

Philip smiles back and kisses them all. Tucks his LAX ticket suavely, without having to look, into the Armani’s inner pocket.

He awakes to a blur, shivering in the bus’s arctic air conditioning, shaking off the preposterous dream. Luis—with a book. Philip can feel his eyes compress into an ironic cast. Luis should have been lounging in limp terry cloth, bunioned dancer’s feet slung over a recliner arm. Or stripped to the waist, black hair flinging sweat, showing off for the guitarist and any lingering students, dancing for the craze of it. He should have been telling Philip—too late, it was probably already too late when he dropped this one: “They wouldn’t go with me in Spain. They won’t go with any American boys. Not with this thing out there.”

Philip unfurls the Armani and drapes it over his chest, snugs it under his stubbled chin. This thing. This murdering whatever-it-is. Why hadn’t he read about AIDS in Titanic-height headlines? How long had Luis known? How much had any of his friends known about it? His friends. And Philip, boy hayseed in Hollywood, gaga with the lights and the nights and his menial little wonderful job at A&U • august 2013

photo by Randee St. Nicholas

A&U’s Summer Reading Issue has become an annual tradition, an opportunity for us to showcase new work by both established authors and emerging talents. This year, we’re thrilled to share work by the winners of A&U’s newly established Christopher Hewitt Award. (Poet Christopher Hewitt, now deceased, was a founding board member of A&U and served as its literary editor for many years.) Given each year to the best unpublished poetry, fiction, creative nonfiction, and drama that addresses HIV/AIDS, it’s our chance to recognize and encourage quality work that not only builds upon the legacy of thirty years of literature about our community, but also helps to enrich and expand our ideas of what “literature” and “community” mean when we speak about AIDS in the new millennium.

This month, we introduce you to the First Place winners in each genre. Terry M. Dugan’s nonfiction piece “Like Taking Blood from a Baby,” an excerpt from her memoir in progress, uses startling details to capture the heady urgency of the early days of AIDS research. In “Greyhound, 1984,” fiction winner Lisa Sandlin grabs and holds onto the reader with terse, rhythmic language, unique imagery, and a story that’s both unsentimental and poignant. Evan Guilford-Blake, meanwhile, gracefully blends monologue, dialogue, and dance in “Cowboy Nocturne,” his short play about love, loss, and remembrance. And Oklahoma poet Dorothy Alexander’s “Trip to Wyuka” is remarkable for its specificity of character and place, and a last line that cuts right to the bone.

A complete list of winners and runners-up (whose work we’ll be publishing over the next several months) is posted on our Web site: www.aumag.org.

—Brent Calderwood

Paramount: script-reader.

The scenery outside his window—endless cornfields—is canned, sepia; one glance puts it to rest. The silly, vivid dream lingers. As if Victor would touch dessert in a diner. Victor lived on wheat grass smoothies, had Philip tote them to the hospital during his bout with pneumocystis.

And not a hint of the fire-eater Victor morphed into at Colin’s memorial service: cursing Ronald Reagan—not a nickel for research, not for queers— stalking behind the altar to spit out the single vanilla candle Colin’s poor sister had placed there.

The bus station floor is filthy with cigarette butts and flattened candy wrappers. Philip takes himself and his two bags outside to sit on the curb, careful to keep away from the trees where grackles are twittering and shitting. He waits there for his mother to pick him up in the Chrysler. His father, he knows, will be elsewhere when they get home.

An Asian man with one arm hunkers down beside him. The stranger’s knees jut against his chest; his buttocks swing above the curb. A Greyhound brochure wilts from his breast pocket next to the pinnedup sleeve, and his brown leather shoes lack laces. Philip inches away.

Crab-like, the man sidles after him, a small book supported on his knee.

He presses the pages open to a drawing of two sailors with brawny shoulders and nipped-in waists. The sailor in front is bracing himself on a chair. The man keeps shoving the book at Philip, chopping his head forward, barking the same harsh phrase, maybe saying, Do you understand? Do you understand?

Lisa Sandlin is the author of The Famous Thing About Death, Message to the Nurse of Dreams (both from Cinco Puntos Press), In the River Province (SMU Press), and You Who Make the Sky Bend (Pinyon Press). She has a story in Akashic Press’s forthcoming Best of Noir anthology, and she teaches in the Writer’s Workshop at the University of Nebraska-Omaha.

[NONFICTION]

by Terry M. Dugan

Like Taking Blood from a Baby

W

e’ll have to take blood from a vein in the baby’s head,” Eugene said. He frowned when Tina and I hesitated.

“Babies don’t feel pain there,” he insisted.

The preemie nursery was a swamp. To reach the clear plastic enclosures where babies lay immobilized in webs of tubing, we picked our way gingerly through thick wires braided into the backs of the beeping and buzzing life support equipment. But Baby O wasn’t with the rest of this plastic hatchery; he was in the preemie isolation room where it was even damper and hotter.

Although he was wearing a long-sleeved shirt and wrinkled lab coat, Eugene, our new pediatrician, didn’t seem to be sweating like the rest of us. Tina had come down from the lab without her coat, her short red hair already plastered to her head from hours of processing blood samples under the isolation hood. This was the last blood draw of the day for the maternal transmission of HIV study and she wanted to get her hands on the tubes as quickly as possible so she could go home at a normal time and see her husband.

I never wore a lab coat, just a blouse and skirt with pockets big enough to conceal the tools of my trade: blood tubes, butterfly needles small enough for tiny veins, sterile gauze, band-aids, and latex gloves.

In 1986, I talked my way into a job at Bellevue Hospital working as a researcher at the Pediatric AIDS Clinic, which was easy at the time, because no one wanted to touch anyone with AIDS. In the past year, a august 2013 • A&U

[POETRY]

by Dorothy Alexander

Trip to Wyuka for Paul Brandhorst, 1966–1998 His first night at support group he wore a western hat low over his eyes, a toothpick in the side of his mouth, thumbs hooked in Levi pockets, pretended to be a cowboy.

He said nothing save his name but afterwards followed me out to ask a question, the kind you just know is an excuse for conversation.

I had seen enough before this night to know how it would go.

His family had scattered like quail at the mention of AIDS, were still in hiding.

He was driven to bitter tears by unfairness, injustice, and loneliness.

Under the brim of the Stetson he was desperate to connect.

Near the end he asked to see his mother’s grave in Nebraska. We walked the streets of Lincoln, while he pointed out landmarks, his mother’s grave in Wyuka Cemetery, the pauper’s plot of infamous Charlie Starkweather.

Our second time in Lincoln, I carried him in an urn, left him in that place where mothers, sons and murderers lie down together, all injustice and bitterness swallowed up in the dirt.

Dorothy Alexander is a poet, storyteller and retired lawyer. She began writing poetry after the loss of her son, Kim Alexander, to HIV/ AIDS in 1989. She is the co-founder of a small independent poetry press promoting the work of Oklahoma poets. The Oklahoma Center for the Book presented Dorothy with the 2013 Carlile Distinguished Service Award for her services to the literary community.

35

school in Brooklyn had been closed down by frantic parents when an eleven-year-old boy infected with HIV during a transfusion tried to enroll.

Angry residents of a town in Florida burned down the home of three HIV-infected hemophiliac brothers to force the family to move away and not send their kids to the local schools. My husband’s coworkers, meeting me for the first time at a cocktail party but already knowing what I did for a living, refused to shake my hand.

My part in this particular vascular drama, besides sweating profusely, was to have the correct glass tubes ready for the blood draw, to code and date each tube, and to complete the paperwork that identified the specimens and tracked them to the appropriate abbreviated destination, CDC, NYCDOH, BELLEVUE PEDS ID. The sterile glass tubes, known by their brand name, Vacutainers, averaged four inches long and a half-inch wide but some were bigger or smaller; there were various colored rubber tops signifying their eventual use for testing and analysis.

I spent the last six months asking squeamish, skeptical, and very scared pregnant women if they would consent to having their blood drawn using the new HIV antibody test. The majority of the pregnant women at the Bellevue prenatal clinic ignored me or said no. Baby O’s mother had just barely survived a bout with pneumocystis carinii pneumonia. Though there was a formal consent procedure, taking her blood sealed the deal between us.

At two days old, her baby was jaundiced and shriveled, though he was born near term and bigger than the other preemies.

Locating a viable vein was a matter of art and experience. No amount of book learning could teach you how a good vein feels to the finger, how it yielded under the skin when palpated. Eugene, energized by the confidence that accompanied inexperience, jabbed the tip of the 25 gauge butterfly needle into the vein he had chosen, just above the forehead over the baby’s right eye. Baby O, unimpressed with Eugene’s technique, sprung into action, crying, kicking, thrashing.

“Help me out,” Eugene demanded. I grabbed the baby from above and held his soft, tiny head as steady as I could. Tina fainted dead away behind the bassinet. The baby squirmed and screamed lustily, threatening to knock over the tubes I positioned close by. I strained to hold the baby’s head still without crushing him, while Eugene was forced to jab another vein behind the right ear. This time, he struck blood.

As the thin trickle began, Eugene and I struggled to insert the other end of the needle into one of the Vacutainers. Usually, it would be just a matter of puncturing the rubber top, filling the tube, and quickly puncturing the next tube top while the blood was flowing, a crude but effective procedure that allowed many tubes to be filled with one tremulous jab.

Eugene was as agitated as the baby: “Hold tighter...where’s the damn red top…Is she pregnant? Keep the baby still...He’s moving too much...Gimme that red top first...keep his feet down…Hand me the green

36

top HURRY UP...Where’s the purple top?”

There wasn’t more than a squirt in each tube but he saved the best squirt for last, so that the purple top, which was used for lymphocyte analysis, had an actual measurable quantity in it. The chief of Pediatric Infectious Diseases, Bill, alerted by the charge nurse, appeared with smelling salts. “Is she pregnant?”

By the time I had gathered up Vacutainers, sharps, and used gloves, Tina was sitting up, gasping: “I’m not pregnant.” I left the doctors bending over Tina.

My last specimen delivery of the day was the 23rd Street post office where I had to send the red tops and green tops, securely packaged in a heavy-duty cardboard tube stuffed with plastic bubble wrap to the CDC labs by overnight express. CDC had given me a number code so that Bellevue Hospital Pediatrics did not have to absorb the cost of shipping the specimens.

But the postal clerk behind the counter decided that I looked suspicious or stupid or nutty enough to defraud the government of the seven bucks mailing fee.

“What is this?” he asked.

Specimens of babies’ blood from Bellevue Hospital for the CDC.” “Where are you sending this?”

“C—D—C, ATLANTA, GEORGIA.” “Wait a minute.” He thumbed through a thick book, and with a grim purse of his lips, looked up at me. “This code is for the Federal Reserve Bank.”

The image of a mailroom clerk at the Federal Reserve Bank opening this package, handling the Vacutainer tubes, and reading the accompanying lab slip, clearly marked CDC HIV LABS: PEDIATRIC AIDS, alarmed me. What would happen if the hundreds of bureaucrats running the economy fled the Federal Reserve building, panicking because someone they worked with had touched a package with HIV blood in it?

I leaned over the counter and got very close to the postal clerk’s face. “If you send this to the Federal Reserve Bank, I guarantee that the economy will come to a standstill.”

Rather than annoy a demented customer in an area populated with ambulatory outpatients from Bellevue’s mental health clinics, the clerk admitted that he was using an old code book, and well, since the words CDC ATLANTA were clearly written on the package, he would send it there.

Because we were desperate to understand this mysterious and deadly disease, every specimen from every HIV infected person was important, but none more precious to us than Baby O’s.

Terry M. Dugan worked as a researcher at the pediatric AIDS clinic at Bellevue Hospital in the 1980s and continued to work on HIV/AIDS research at other sites until funding became scarce. She has won awards for poetry and fiction examining the lives of people with HIV/AIDS and those who care for them.

She has lectured on human rights and AIDS in Africa at Oxford and was invited to read her poetry at the United Nations. She is currently completing an MFA at Manhattanville College.

A&U • august 2013

[INTERVIEW] Kite Tale

A New Spanish-Language Book, Volando cometas, Teaches Young Children About HIV

by Brent Calderwood

photo courtesy Lawrence Schimel

In the new Spanish-language picture book Volando cometas (Bellaterra), author, editor, and translator Lawrence Schimel tells the story of a young boy, Daniel, who learns about AIDS/sida while visiting his HIV-positive aunt during a family holiday.

Volando cometas (which means “Flying Kites”) succeeds where many education-oriented children’s stories founder, providing a wealth of factual information without sacrificing narrative. The text, which manages to be both refreshingly frank and lighthearted at the same time, is beautifully illustrated

by Núria Fortuny Herrero, whose whimsical full-page images are painted in bright bold strokes that help to establish the book’s overall tone.

Volando cometas is not Schimel’s first foray into the world of juvenile literature. His picture book No hay nada como el original was selected by the International Youth Library for the 2005 White Ravens list of noteworthy books for children and young adults, and his picture books ¿Lees un libro conmigo? and Igual que ellos/Just Like Them were selected by IBBY for Outstanding Books for Young People with Disabilities in 2007 and 2013, respectively.

Schimel, who writes in both English and Spanish, has published over 100 books as an author or anthologist. A two-time winner of the Lambda Literary Award, for First Person Queer and PoMoSEXUAL, he lives in Spain, where he works as an English–Spanish translator.

A&U recently spoke with Schimel about his newest book.

“...while it’s easy to recognize, say, active misogyny or homophobia, the passive manifestations of prejudice are often the more noxious because they present and represent a world that normalizes the absence of those people.”

Brent Calderwood: What is Volando cometas about?

Lawrence Schimel: The book features a young boy whose family goes to visit his aunt at the beach for a holiday weekend; he knows something is wrong with the aunt because of a comment his mother makes when they get the invitation, but his parents change the subject, saying they’ll discuss the matter later, so he also knows they’re hiding something from him. But he doesn’t dare to break the silence, and imagines all sorts of catastrophic scenarios in the face of that lack of knowledge.

When they get to the aunt’s, because of his fear a scene takes place, but the boy no longer trusts his own parents since they’ve been actively hiding information from him. In the end, it is the aunt’s new boyfriend, who’s seronegative, who he turns to for information, and once he has solid information as to what she has and how it is (and is not) transmitted, he loses his fear, and is able to enjoy continued on page 46

august 2013 • A&U

37

lifeguide

P

revious studies have established immunotherapy candidate AGS004, both as a single agent and in concert with antiretrovirals, to be safe and well-tolerated, lacking toxicity, and, importantly, as conferring an effective immune response—an atypically long delay in viral rebound and a significantly reduced viral load when compared to pre-antiretroviral therapy levels. Now, in light of research breakthroughs that show potential for flushing out latent reservoirs and improved assays to monitor viral and therapeutic impact, the objective for AGS-004 has shifted in the direction of cure for those already infected with HIV—that is, the “complete eradication of replication-competent cells,” as Dr. Charles Nicolette, the Chief Scientific Officer and Vice President of Research and Development for Argos Therapeutics, maker of AGS-004, so deftly puts it.

Data on AGS-004 was recently presented at the Towards an HIV Cure Symposium at the International AIDS Society conference in Kuala Lumpur, Malaysia. “What we’re trying to do here is fundamentally different from what has been attempted in the past. When people hear the word ‘cure’ they should be skeptical about it,” Dr. Nicolette says about “cure”-claim fatigue among the HIV community, “but that really is what we’re aiming at. And, in theory, we have the tools and the strategy that could potentially lead there.”

Though effective at viral suppression, antiretrovirals have not been shown to be able to restore effective HIV-specific immune responses (CD4 and CD8 T cell responses) capable of eliminating all virus. Thus, HIV disease remains chronic, rather than dismantled and inoperable thanks to a restored immune system. That restorative potential, in part, lies with immunotherapeutic agents.

A popular immunotherapy approach has been to load dendritic cells (DC) with HIV antigens (via viral and non-viral carriers) and immune modulators in order to stimulate immune cells, and especially CD8 T cells, to increase and broaden their response.

However, HIV, due to its ability to mutate and its high genetic variability, is often not easy to make recognizable because it has multiple and patient-personalized antigens that go undetected. The common single-antigen approach, therefore, is limited; it may

38

by Chael

Fully Personalized

Needle an immunotherapy candidate stimulates t-cell responses via patient-specific antigens

elicit an immune response but not significantly reduce the viral load because the immune system isn’t “seeing” the virus in all its complexity. “Using one sequence of an antigen to raise an immune response against the virus when you have thousands or tens of thousands in a patient is just poorly matched to the patient’s viral load. So, we see no impact,” says Dr. Nicolette.

With its branded Arcelis Technology, Argos loads a patient’s own dendritic cells with a sample of messenger RNA (“mRNA”)—in this case, a patient’s particular RNA encoding for CD40L and for all of the mutated species of HIV antigens Gag, Nef, Rev, and Vpr—derived from each patient’s pre-ART plasma via a one-time outpatient procedure involving a process called leukapheresis. These dendritic cells, now loaded and then intradermally reinjected, can potentially prime immune responses to the entire antigenic repertoire.

Personalizing the antigen payload so that the agent is perfectly matched to each patient’s viral load is only part of the strategy; the engineered dendritic cells, specially programmed for a patient’s damaged immune system, also deliver immune stimulators.

“The patient’s immune system is not normal, so you have to engineer it to be able to function normally in that environment. What we have done is engineer certain signals that would normally come from the patient’s own immune machinery into our product so that our product behaves as if it’s in a normal immune environment,” explains Dr. Nicolette.

“After you inject the cells into the patient, they migrate to the nearest lymph nodes and they begin communicating with the patient’s CD8 T cells. And CD8 T cells are the ones that will actually go out and do the dirty work of killing an infected cell, once they’re educated.…The product basically educates the CD8 cells to go out and find anything that looks like what they were instructed to recognize.”

Summarizes Dr. Nicolette: “Our experiment was to answer the question: If you could raise an immune response that was matched, that was 100 percent relevant to that patient’s viral species, can you impact viral load? And the answer to that was ‘yes.’ To our

knowledge, this was the first reporting of an immunotherapy that was able to reduce viral load by the levels we observed.”

But, says Dr. Nicolette, continuing down this development path does not make a lot of sense because it’s not expected that AGS-004, or any immunotherapeutic agent, on its own would clear the virus from latent reservoirs, where it persists in dormancy and can be reactivated if antiretroviral therapy stops. Researchers at Argos, a North Carolina-based company, are planning to see if HDAC inhibitors, part of a new class of reservoir mobilizers, could be used in conjunction with AGS-004. Argos is currently working with Dr. David Margolis of the University of North Carolina, who has tested the HDAC inhibitor called vorinostat in HIV patients and demonstrated that it can activate the latent reservoir. The goal is to see if this plus AGS-004 is an effective combination. “If a cell is infected but not producing the viral proteins, it’s going to be invisible. It’s going to be missed.

So combining this approach with something that makes those cells visible makes a lot of sense. Our ultimate goal will be to flush out and eliminate all of the infected cells.”

Argos is currently working on a clinical protocol with Dr. Margolis and could possibly start recruiting for clinical trials later this year or early next year. “In contradistinction to our previous studies there would be no requirement for anyone to interrupt their drugs unless we had a strong inclination that the virus had been entirely cleared. So I think that’s good news for patients who are willing to participate in clinical studies. We’re not asking them to put a lot of skin in the game in terms of any kind of potential clinical risk in terms of drug interruption.”

Chael Needle wrote about HarborPath, a patient-assistant drug access organization, in the June issue.

A&U • august 2013

illustration by Timothy J. Haines

treatment horizons

Location, Location, Location

how will the affordable care act affect hcv care?

I

illustration by Timothy J. Haines

n October, open enrollment for state-based health insurance marketplaces as part of the Affordable Care Act, or ACA—or Obamacare, as it’s called by its detractors— will begin. Already the ACA has eliminated the discriminatory insurance practice of denying coverage for patients with pre-existing conditions such as viral hepatitis. January is when the affordability part of the ACA kicks in, and in many states the ACA will bring lower treatment costs and free screening. The degree of affordability for viral hepatitis care and screening depends on where you live.

Treatment First, those who plan to keep their employer-sponsored coverage will likely not see any changes in HCV treatment. For others, there will be options that can be helpful.

In January 2014, health insurance marketplaces, also called “exchanges,” can make treatment more affordable for those who participate. But affordability also depends on Medicaid expansion in each state, and not every state will be equal.

Those who earn more than the federal poverty line but less than four times that amount, and who can’t get coverage through their jobs, can use government subsidies to buy a health plan on the new exchanges. Those who earn less than the poverty line can get insurance via expanded eligibility for Medicaid programs.

When the Supreme Court upheld the individual mandate part of the Affordable Care Act last year, it also said that each state could decide whether to take their share of federal Medicaid dollars, or opt out. More than half of the states— mostly those with Republican governors or Republican-controlled legislatures— have said “no” or are leaning toward “no.” States where Democrats are the majority, have said “yes.”

That means in states that have rejected the Medicaid expansion, low-income people earning between 100 percent and 138 percent of the poverty level can go

august 2013 • A&U

to the insurance exchanges for subsidized insurance coverage, but those with earnings below the federal poverty level are out of luck. Because the administration and Congress assumed the poorest of the poor would automatically go into the Medicaid system, they did not make a provision to subsidize them through the ACA. Prevention As with treatment, coverage for prevention will vary. Those eligible for Medicare, no matter where they live, can opt for HCV screening as part of their annual wellness visit. Others, in states with Medicaid expansion dollars—the “blue states,” generally—can get free viral hepatitis screening if they fall into the risk groups (IV drug users, or, now, those in the Baby Boomer cohort, now aged forty-nine to sixty-nine) if they choose insurance through the state marketplaces.

Some states opting out of Medicaid expansion will have the option of covering HCV screening anyway. In other states, patients will pay out of pocket, or use private insurance (if they have private insurance and if screening is covered).

For Health Providers The National Alliance of State and Territorial AIDS Directors (NASTAD) has released a primer (Link: http://nastad.org/ docs/Primer-ACA-Hepatitis-March-2013. pdf) with action steps to help health providers take advantage of everything the ACA can offer in their states.

There are a lot of moving parts in the ACA. Viral hepatitis advocates and providers, and particularly state health departments, have a role to play, according to Oscar Mairena, Manager of Viral Hepatitis/Policy and Legislative Affairs at NASTAD. “Perhaps the most significant opportunity presented by the ACA is the potential to integrate viral hepatitis services into broader health systems, particularly important given that there is no separate health infrastructure, like the Ryan White Program for those living with HIV, for those infected with viral hepatitis.”

Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His young adult novel, The Genius of Little Things, debuted in January 2013. His comic mystery novel, We’re Here to Help, will be available later in 2013.

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lifeguide

Counting Cures

before we start tallying “cures,” let’s strive to define what we mean by “cured”?

Functional cure: Undetectable viremia without ART; no disease progression; no CD4 loss; lack of HIV transmission

and a normal CD4 count in the absence of ARVs be present before it’s considered a functional cure?

There’s also no clear identification of what significance circulating HIV fragments in the body retain. What does having a “very low level” of HIV fragments as found in Timothy Ray Brown (the Berlin Patient) and the Mississippi baby, who was treated early with ARVs, actually mean? What importance do they have?

How can eradication be determined if single cell assays used to measure very low levels of virus can’t differentiate between HIV competent of replicating and HIV “debris.”

Shouldn’t the development and standardization of assays specifically designed to identify replication-competent HIV, as well as to detect HIV in certain difficult to reach places, be a main priority?

It’s also becoming more and more apparent that the current definition of a “cure” really could do with a broader sub-classification to include all the different types of “cures” based on how the cure was obtained, i.e., bone marrow transplant, early use of ARVs, or a new therapeutic agent.

As of right now, there is no one who has achieved a sterilizing cure—at least no one upon whom everyone can agree.

The terms “HIV remission” and “post-treatment controllers” are being used by some in the scientific arena. Hopefully they will be adopted by the media to further separate and define cases currently referred to as simply “functional cures.”

The courses each “cure” took to obtain this state are quite different. The types of ways each cure was reached further define the cures themselves and it may be helpful to break them down even more.

These are the main cases that some are calling cured of HIV, and, from my best understanding, this is how they are currently defined:

One aspect that creates confusion is there is no specifically defined time frame for when a person is deemed functionally cured.

How long should an undetectable viral load

Stem-cell transplants Timothy Ray Brown: Some believe Timothy to be a case of a sterilized cure but other experts feel more comfortable calling this a

Sterilizing/eradication cure: Complete eradication of HIV-infected cells from the body

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functional cure.

The Boston Patients: Some are calling this a functional cure while others believe it is too soon to tell.

Very early treatment with ARVs The Mississippi baby: Conservatively called “HIV remission.”

The VISCONTI Study (fourteen individuals): Being called “HIV remission.”

A sixty-seven-year-old German man (treated within ten weeks of exposure to HIV and off ARVs for nine years): Many are calling this a functional cure.

It’s time for the formulation of more precise definitions of HIV “cures” to be devised and utilized not only within the HIV scientific community but also to curtail the media from inaccurate “cure” reports.

Hope is a beautiful thing. False hope can be dangerous and cruel to those hoping to be cured. Shouldn’t we more accurately define a “cure” before counting the cured?

This edition of Destination: Cure is dedicated to Eric Blue for his bravery and selfless contribution to cure research. The twelve-year-old who lived with HIV and leukemia passed on July 5, 2013, three months after receiving an umbilical cord transplant which attempted to cure him of HIV and leukemia. You will be forever remembered, little brother.

Jeannie Wraight is the editor-in-chief and co-founder of HIV and HCV Haven (www.hivhaven.com) and a blogger and writer for the Body.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 • august 2013

illustration by Timothy J. Haines

S

everal months ago a media frenzy reported Danish researchers as being months away from curing AIDS. During this time, countless individuals discontinued their HIV medication, believing the cure would soon be available.

With the recent flurry of HIV “cure” reports, it’s becoming increasingly more difficult to sort out who’s actually been cured and what stories are media hype, wishful thinking, or premature reports of success.

Most people recognize headlines depicting cures in the form of herbal remedies or drugs yet to be tested in a single human being as either media hype or outright rubbish aimed at selling newspapers, stock, or a product.

But what about the cases we hear announced at respected scientific conferences that sound completely realistic? How many of the cases of “functional cures” we’ve celebrated over the past three years are really actual cures?

Several of these cases come complete with a wake of conflicting reports and opinions creating confusion as to their merit.

In my black-and-white way of thinking it seems an obvious enough question to ask who, by scientific standards, is actually cured.

I posed this question to several HIV researchers and cure activists and received many different answers. This is really not surprising as the in-depth parameters of exactly what defines a cure are not all that clearly outlined.

Currently there are two types of HIV cures. They’re defined by the International AIDS Society (IAS) as follows:

AIDS CARE ROCHESTER 4/C

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E R U T CUL S THE

lescence, she was increasingly at loggerheads with her father over OF his sexual orientation. She was embarrassed by his homosexuality and hid it from everyone she knew. She writes, “To grow up the child of a gay parent in the seventies and eighties was to Fairyland: A Memoir live with secrets.”

As a single parent, of my Father Steve Abbott

by Alysia Abbott was frustrated in W.W. Norton & Company his attempts to find someone to love.

He longed for Alysia Abbott’s memoir, Fairyland, a committed, longis a loving tribute to her poet-activist father, who died of AIDS-related causes in term relationship with a gay partner but 1992. Steve Abbott was a poet, novelist, resigned himself to essayist, editor, columnist, cartoonist, one-night stands with and teacher. He worked tirelessly to enfeckless young men rich the literary scene in the Bay Area, who pinched their showing unflagging dedication when things. Alysia Abbott it came to building and nurturing a fantasized about community of writers in San Francisco. having a mother and He served as co-editor of Poetry Flash, a craved the stabilWest Coast periodical that encouraged ity she associated intellectual discourse on literary movements. Later, he launched SOUP, a liter- with the two-parent households she saw on television’s ary magazine that showcased the works Eight Is Enough or The Brady Bunch. of gay and lesbian writers, minority He cultivated a bohemian lifestyle and writers, and transgressive writers. In wore his poverty as a badge of honor.

1981, he helped organize the historic She wanted nothing more than to fit in Left/Write conference to foster diaat school, writing “…our ratty apartlogue among warring camps of writers. ment and car, and my shabby, ill-fitting Acclaimed writers and artists gathered clothing, became a liability, another way around his wooden spool table for I stood apart.” In spite of the inherent dinner and drinks. He met the leading hardships, Steve Abbott was determined literary lights of the day including Allen to raise his child on his own after the Ginsberg and William S. Burroughs. In death of his wife albeit in an unconvenaddition to his published works, Steve tional way. Fairyland makes the national Abbott left behind a cache of journals, debate on gay families seem academic. letters, and cartoons, all of which his In the 1980s, San Francisco suffered daughter drew upon to write Fairyland. a body blow from an unnamed disease Alysia Abbott grew up in the that claimed the lives of a disproporHaight-Ashbury district of San Francistionately large number of its citizens. co in the 1970s and ’80s, raised by an While the number of Americans with openly gay single father. She chronicles AIDS skyrocketed during the eighties, a childhood filled with poetry readings, San Francisco was the first city to expepotluck dinners, Gay Pride parades, and rience epidemic levels of the disease. games of hide-and-go-seek in Golden Steve Abbott tested positive for HIV in Gate Park. However, Fairyland is not a 1986, but his daughter admits she canpanegyric to a romanticized version of not remember the moment when she the author’s childhood. Instead, it is a heartrendingly honest portrayal of a learned he was sick. With unflinching deeply loving yet complex father-daughhonesty, she confesses her first instinct ter relationship. As Abbott entered adowas to shrink from the responsibility

D I A

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of taking care of him in the final stages of his illness. Fairyland is a eulogy to all of the friends, neighbors, and acquaintances who dropped out of sight and then died as the result of a disease President Ronald Reagan refused to publicly acknowledge until 1987. The book is a paean to an extraordinary city at the forefront of far-reaching cultural and political changes combined with an intimate portrait of an iconic neighborhood that has changed since the seventies and eighties due to the calamitous effects of AIDS as well as the inexorable march of time. Fairyland provides a deeply personal and painful perspective on the history of AIDS in America. Above all, though, Alysia Abbott’s eminently readable memoir celebrates the life of Steve Abbott—father and trailblazing poet—with both affection and unblinking candor.

—Sally Hessney Sally Hessney is a program assistant at a nonprofit organization, where one of the educational missions is to educate teenagers about the dangers of binge drinking, prescription drug abuse, distracted driving, STDs, and other consequential issues.

A&U • august 2013

Lifelines

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ou still have a chance to see a stunning, stirring exhibit at the Whitney Museum of American Art in New York City. Culled from the museum’s permanent collection and organized by Whitney curator David Kiehl, “I, You, We” assembles paintings, sculpture, drawings, prints, and photographs from the 1980s and early 1990s that put into play artists’ perceptions about themselves, others, and society in an era marked by “greed is good,” gentrification and disenfranchisement, and marginalization and resistance. The exhibit traces how the works of Jasper Johns, Barbara Kruger, Glenn Ligon, and Nan Goldin, among many others, explore the multiple, interconnected meanings and subjectivities that emerge out of these three personal pronouns. One entire gallery is dedicated to AIDS and its turbulent impact on the arts community as well as the country as a whole.

Works by General Idea, David Wojnarowicz, Donald Moffett, Martin Wong, and Hugh Steers, among others, are represented.

Date: Until September 1; location: Whitney Museum of American Art, 945 Madison Avenue, New York, New York.

For more information about the exhibit, log on to www.whitney.org.

Sue Coe, b. 1951. Thomas–Galvaston Hospital, 1994, Drypoint, Sheet (Irregular): 13 by 9 3/4 inches (33 by 24.8 centimeters). Whitney Museum of American Art, New York; purchase, with funds from the Print Committee 94.74.9.

Copyright © 1994 Sue Coe . Text reads: “My family didn’t want me for Christmas. They gave me paper plates and cups to eat off.” Jan. 1994

Ruby’s Rap continued from page 16

I know some therapists believe that self-disclosure is inappropriate. How do you address that, especially since you’ve written a book that certainly reveals a lot about yourself ?

I believe self-disclosure with a clear purpose is often useful. Newly HIV-positive clients respond to my having lived with HIV for thirty years, while other therapists only tell them about HIV-positive people who are thriving. I am proof.

As a writer, I seek to uncover and share my truth. I believe in the power of our story.

I do not share unresolved issues with clients, however.

What drug therapy are you on?

I’ve been on meds since October 1995. I won a lottery for early access to Crixivan. I’m on three meds which I take twice a day. I also take vitamins and herbs, do yoga, get acupuncture, and live

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a reasonably healthy lifestyle. My health is excellent. When I went on meds my T-cell count was twenty-two. Last check-up it was 879. I am truly fortunate.

horror, but a serious inconvenience that can and should be avoided. They can learn from other challenges…they can skip this one!

Glorious! When you encounter a client who is newly diagnosed, what do you say to them?

“Take some time to find your balance.

Allow for your feelings, get support, and see a great doctor. Being diagnosed in 2013 is not what it was before 1995. There is no reason to let HIV stop you from realizing your dreams. Use it as an opportunity to live more fully.”

Who do you consider heroes in the epidemic?

Larry Kramer, all of the ACT UP founders, Paul Monette, and countless men and women who have given and acted and cared for PWAs over the decades. The international pandemic continues, Ruby.

We still need to be activists and educators.

A cure is necessary and possible. Silence still equals Death.

Well said. How can we combat AIDS-phobia?

Much of AIDS-phobia is based on outmoded twentieth-century thinking. It’s a condition that can be avoided and if one gets it, it can be managed. Eventually there will be a cure. Hopefully in my lifetime!

[He strikes an animated smile, as his skyblue eyes beam.]

In your talks around the USA, what do you tell the younger people about HIV? I let them know that HIV is not a

Yes, Sir! How does one confront aging in a society where youth is glorified?

As a survivor of AIDS, I have come to see aging as a privilege. I embrace becoming an elder, however, an elder with vitality.

I want to live full-out and be “used up” when I die, as George Bernard Shaw said.

He lived to be 101.

Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com.

A&U • august 2013

BBCM PU MAY 4/CGIRL POZMATCH.COM PU MAY 4/C Restaurant & Lounge

SUMMER READING continued from page 37

the weekend, winding up flying kites on the beach with his aunt, a favorite pastime she and he both share.

How did you come up with this project?

Prejudices can manifest in both active and passive forms, and while it’s easy to recognize, say, active misogyny or homophobia, the passive manifestations of prejudice are often the more noxious because they present and represent a world that normalizes the absence of those people. So a lot of my children’s books try to redress the imbalance and feature characters who are so often made actively absent. When I read the World Health Organization’s report at the end of 2009 that HIV/ AIDS was the number one cause of morbidity for women of childbearing age throughout the world, I decided to try and redress that generalized invisibility of HIV and particularly HIV and women in books for kids, which is one of the main areas I write for these days.

Have you addressed HIV/AIDS in your previous work?

This is by no means the first book of mine to address HIV directly, although it is my first children’s title to do so. Many years ago, I published a cookbook of recipes by LGBT celebrities, Food for Life and Other Dish, where all royalties were donated to meals-on-wheels programs serving people with AIDS. And when my collection of gay erotic stories for adults, His Tongue, was first published in Brazil and in Spain, a lot of emphasis was made in reviews about the novelty of using erotica to educate about safer sex.

I know the book is currently available in Spanish.

Will it also be translated into other languages?

The book was written in Spanish and is also available in Catalan and is forthcoming in Slovenian as well. I hope an English-language edition might be available someday.

What audience are you hoping to reach with this book?

In addition to the story, there is a nonfiction appendix at the back, with more information about what HIV is, how it is (and is not) transmitted, etc., that can be used by parents or educators to further talk about HIV. The book is intended for a general audience of young readers, and is meant to be accessible and understandable to all, whether or not they know that someone they know has HIV. Volando cometas and other titles by Schimel are available at Amazon.com. Follow him on-line at www.twitter.com/ lawrenceschimel.

[DRAMA]

by Evan Guilford-Blake

The following short play is a “ghost” story of memory, in which a man recalls his lover, and the music that was integral to their love.

Cowboy Nocturne CHARACTERS: BANDO: Male. About 50 and 25.

BOBBY: Male. 40–50.

OLIVIA: Female. 25–40.

SETTING: A bare stage with one chair.

TIME: Approximately the present, and the mid-1980s.

NOTES: The music to Cowboy Nocturne by Robert Savage is available on CRI

Records’ CD 790. This play is dedicated to Allen Hagler, Aimee

McCoy and Jon Moor. For Roxanna.

AT RISE: Music—Cowboy Nocturne—up. BANDO is discovered.

BANDO: Let me tell you about love: About real love. About being in love. With a butterfly. I met Bobby when I was 25; he was, oh—older. Olivia introduced us; she was his roommate back then. Bobby’d been around the block a few times. (Smiles) Me too. But going around the block was what you did in those days, what ev’ryone did. It was 1983. (Wryly) Didn’t none of us know no better; then. Bobby, he was a butterfly: Light, delicate. Beautiful. Seemed like he floated.—Like this. (The music) And, he was a cowboy—and before you break out the Brokeback Mountain jokes, he never set foot west of the Hudson but, you know—we both were: I mean, I always liked boots and chaps and spurs and leather vests. And ropes; and—stuff. And he liked me—in them.

(Lights rise on OLIVIA, dancing, and BOBBY) BANDO: (cont’d) Played the piano and wrote music, too. This is one of his: Cowboy Nocturne, he called it....He wrote it for me. One night, a little while after I moved in with them. I came home, Olivia was there, doing—that. He just raised his one hand, real slow, to his lips. “O’s dancin’,” he mouthed, and he kept playing till he finished it, three or four times; and O kept dancin’, big smile. On both of ’em. And when he finished, they smiled at each other and he got up and came over to me.

BOBBY: That’s for you.

BANDO: He whispered.

BOBBY: Like it?

BANDO: Yeah.

BOBBY: Good. I hoped you would.

BANDO: And he put his arms around me and held me in this, kind of dance, kind of swaying. (BOBBY continues to move, his arms around BANDO.) And Olivia, she danced around us.

BOBBY: Like a cocoon. My little butterfly.

BANDO: Course, he was the butterfly. His wings were his music, Olivia says.

(BOBBY moves away and off. OLIVIA continues to dance.) Butterflies don’t fly very long. But he still—visits me. In the dark; when I’m dark. I can feel him, his arms.

We—sway. And I still got this. (He indicates the MUSIC) Maybe it’s not the same.

But I still got—this.

(OLIVIA extends her arms to him. BANDO moves into her embrace as lights fade. In black, the music fades.)

THE END Evan Guilford-Blake’s prose and poetry have appeared in numerous print and on-line journals, as well as in several anthologies, and won thirteen contests. Noir(ish), his first novel, was recently published by Penguin. He’s also won forty playwriting competitions; eighteen of his plays are published. More information is at www.guilford-blake.com/evan.

Brent Calderwood is Literary Editor of A&U. His Web site is www.brentcalderwood.com.

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A&U • AUGUST 2013

The Thomas O. Cash

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September 7, 2013 Greeley Park Band Shell Registration beginning at 10 am Walk beginning at 11 am

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august 2013 • A&U

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all photos © Edwin Santiago Photography; clockwise from top left: photo 1 by Chris Moreno; photos 2 & 4 by Philip Ruiz; photo 3 by Mell Will

Concrete Hero Five miles, ten obstacles—participants who raced in the second annual Concrete Hero embodied the determination and support that individuals living with HIV/AIDS in Los Angeles County need to face their day-to-day challenges.

Downtown Los Angeles was transformed into a series of fun, gritty obstacles that represented iconic elements and landmarks of Southern California. Starting and finishing at Los Angeles State Historic Park, the timed racers The mission: clamber over twelve parked cars and four buses in “Carmageddon”; scale nearly two stories over a mock “Hollywood raised over half a million dollars for AIDS Project Los Angeles and its much-needed programs, such as direct Sign”; swing over massive mud pits in the “Tar Pit Traverse”; navigate two slides and culvert subway tunnels in “Subway to care services that help more than 62,000 individuals; the Vance North Necessities of Life Program, which dis- Nowhere”; and more! tributes more than 160,000 bags of groceries each year in Los Angeles to those facing HIV and hunger; APLA Dental Services; and the APLA Health & Wellness Center, which offers a comprehensive range of services including prevention programs, HIV and STD testing and treatment, as well as counseling and other programs. After everyone caught their breath, participants and supporters were treated to an L.A.themed block party, complete with music, beverages, and food trucks.

For more information, visit www.apla.org. To donate or access additional information on Concrete Hero Los Angeles, log on to: www.concretehero.org.

A&U • august 2013