JUNE 2014 • ISSUE 236 • AMERICA’S AIDS MAGAZINE
laverne
COX
THE Orange Is the New Black STAR FIGHTS FOR HEALTH JUSTICE THROUGH A FEMINIST LENS
THE STIGMA PROJECT
COMBATS HIV BIGOTRY
plus
Africa Goal • Frank Spinelli Gerard H. Gaskin • New Treatment Guidelines • Irene Soderberg
project 1Voice
Wants African-American Theater to Stay Healthy
What is STRIBILD? STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. It combines 4 medicines into 1 pill to be taken once a day with food. STRIBILD is a complete singletablet regimen and should not be used with other HIV-1 medicines. STRIBILD does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking STRIBILD. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.
IMPORTANT SAFETY INFORMATION What is the most important information I should know about STRIBILD?
• Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking STRIBILD, your hepatitis may suddenly get worse. Do not stop taking STRIBILD without first talking to your healthcare provider, as they will need to monitor your health. STRIBILD is not approved for the treatment of HBV.
• Take a medicine that contains: alfuzosin, dihydroergotamine, ergotamine, methylergonovine, cisapride, lovastatin, simvastatin, pimozide, sildenafil when used for lung problems (Revatio®), triazolam, oral midazolam, rifampin or the herb St. John’s wort. • For a list of brand names for these medicines, please see the Brief Summary on the following pages.
• If you take hormone-based birth control (pills, patches, rings, shots, etc).
• Take any other medicines to treat HIV-1 infection, or the medicine adefovir (Hepsera®).
• If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD.
What are the other possible side effects of STRIBILD?
• If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD.
Do not take STRIBILD if you:
Serious side effects of STRIBILD may also include:
• Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.
• New or worse kidney problems, including kidney failure. Your healthcare provider should do regular blood and urine tests to check your kidneys before and during treatment with STRIBILD. If you develop kidney problems, your healthcare provider may tell you to stop taking STRIBILD.
• You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions.
• All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking STRIBILD without first talking with your healthcare provider.
Who should not take STRIBILD?
STRIBILD can cause serious side effects:
• Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain.
What should I tell my healthcare provider before taking STRIBILD?
• Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking STRIBILD. The most common side effects of STRIBILD include nausea and diarrhea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.
• If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in STRIBILD can pass into breast milk, and it is not known if this can harm the baby.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Brief Summary of full Prescribing Information with important warnings on the following pages.
STRIBILD is a prescription medicine used as a complete single-tablet regimen to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD does not cure HIV-1 or AIDS.
I started my personal revolution Talk to your healthcare provider about starting treatment. STRIBILD is a complete HIV-1 treatment in 1 pill, once a day. Ask if it’s right for you.
Patient Information STRIBILD® (STRY-bild) (elvitegravir 150 mg/cobicistat 150 mg/emtricitabine 200 mg/ tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information.
• Do not stop taking STRIBILD without first talking to your healthcare provider • If you stop taking STRIBILD, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking STRIBILD
What is STRIBILD?
Who should not take STRIBILD?
• STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD is a complete regimen and should not be used with other HIV-1 medicines. • STRIBILD does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood.
Do not take STRIBILD if you also take a medicine that contains: • adefovir (Hepsera®) • alfuzosin hydrochloride (Uroxatral®) • cisapride (Propulsid®, Propulsid Quicksolv®) • ergot-containing medicines, including: dihydroergotamine mesylate (D.H.E. 45®, Migranal®), ergotamine tartrate (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), and methylergonovine maleate (Ergotrate®, Methergine®) • lovastatin (Advicor®, Altoprev®, Mevacor®) • oral midazolam • pimozide (Orap®) • rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®) • sildenafil (Revatio®), when used for treating lung problems • simvastatin (Simcor®, Vytorin®, Zocor®) • triazolam (Halcion®) • the herb St. John’s wort Do not take STRIBILD if you also take any other HIV-1 medicines, including: • Other medicines that contain tenofovir (Atripla®, Complera®, Viread®, Truvada®) • Other medicines that contain emtricitabine, lamivudine, or ritonavir (Atripla®, Combivir®, Complera®, Emtriva®, Epivir® or Epivir-HBV®, Epzicom®, Kaletra®, Norvir®, Trizivir®, Truvada®) STRIBILD is not for use in people who are less than 18 years old.
What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects, including: 1. Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take STRIBILD or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: • feel very weak or tired • have unusual (not normal) muscle pain • have trouble breathing • have stomach pain with nausea or vomiting • feel cold, especially in your arms and legs • feel dizzy or lightheaded • have a fast or irregular heartbeat 2. Severe liver problems. Severe liver problems can happen in people who take STRIBILD. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: • your skin or the white part of your eyes turns yellow (jaundice) • dark “tea-colored” urine • light-colored bowel movements (stools) • loss of appetite for several days or longer • nausea • stomach pain You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. 3. Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take STRIBILD, your HBV may get worse (flare-up) if you stop taking STRIBILD. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. • Do not run out of STRIBILD. Refill your prescription or talk to your healthcare provider before your STRIBILD is all gone
What are the possible side effects of STRIBILD? STRIBILD may cause the following serious side effects: • See “What is the most important information I should know about STRIBILD?” • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking STRIBILD. Your healthcare provider may tell you to stop taking STRIBILD if you develop new or worse kidney problems. • Bone problems can happen in some people who take STRIBILD. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. • Changes in body fat can happen in people who take HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms and face may also happen. The exact cause and long-term health effects of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having any new symptoms after starting your HIV-1 medicine.
The most common side effects of STRIBILD include: • Nausea • Diarrhea Tell your healthcare provider if you have any side effect that bothers you or that does not go away. • These are not all the possible side effects of STRIBILD. For more information, ask your healthcare provider. • Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. What should I tell my healthcare provider before taking STRIBILD? Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, bone, or liver problems, including hepatitis B infection • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. - There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk with your healthcare provider about how you can take part in this registry. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take STRIBILD. - You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. - Two of the medicines in STRIBILD can pass to your baby in your breast milk. It is not known if the other medicines in STRIBILD can pass into your breast milk. - Talk with your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements: • STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. • Be sure to tell your healthcare provider if you take any of the following medicines: - Hormone-based birth control (pills, patches, rings, shots, etc) - Antacid medicines that contain aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or after you take STRIBILD - Medicines to treat depression, organ transplant rejection, or high blood pressure - amiodarone (Cordarone®, Pacerone®) - atorvastatin (Lipitor®, Caduet®) - bepridil hydrochloride (Vascor®, Bepadin®) - bosentan (Tracleer®) - buspirone - carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®) - clarithromycin (Biaxin®, Prevpac®) - clonazepam (Klonopin®) - clorazepate (Gen-xene®, Tranxene®) - colchicine (Colcrys®) - medicines that contain dexamethasone - diazepam (Valium®)
- digoxin (Lanoxin®) - disopyramide (Norpace®) - estazolam - ethosuximide (Zarontin®) - flecainide (Tambocor®) - flurazepam - fluticasone (Flovent®, Flonase®, Flovent® Diskus®, Flovent® HFA, Veramyst®) - itraconazole (Sporanox®) - ketoconazole (Nizoral®) - lidocaine (Xylocaine®) - mexiletine - oxcarbazepine (Trileptal®) - perphenazine - phenobarbital (Luminal®) - phenytoin (Dilantin®, Phenytek®) - propafenone (Rythmol®) - quinidine (Neudexta®) - rifabutin (Mycobutin®) - rifapentine (Priftin®) - risperidone (Risperdal®, Risperdal Consta®) - salmeterol (Serevent®) or salmeterol when taken in combination with fluticasone (Advair Diskus®, Advair HFA®) - sildenafil (Viagra®), tadalafil (Cialis®) or vardenafil (Levitra®, Staxyn®), for the treatment of erectile dysfunction (ED). If you get dizzy or faint (low blood pressure), have vision changes or have an erection that last longer than 4 hours, call your healthcare provider or get medical help right away. - tadalafil (Adcirca®), for the treatment of pulmonary arterial hypertension - telithromycin (Ketek®) - thioridazine - voriconazole (Vfend®) - warfarin (Coumadin®, Jantoven®) - zolpidem (Ambien®, Edlular®, Intermezzo®, Zolpimist®) Know the medicines you take. Keep a list of all your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. Do not start any new medicines while you are taking STRIBILD without first talking with your healthcare provider. Keep STRIBILD and all medicines out of reach of children. This Brief Summary summarizes the most important information about STRIBILD. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about STRIBILD that is written for health professionals, or call 1-800-445-3235 or go to www.STRIBILD.com. Issued: October 2013
COMPLERA, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, the STRIBILD Logo, TRUVADA, and VIREAD are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. © 2014 Gilead Sciences, Inc. All rights reserved. STBC0076 03/14
Saturday, August 16, 2014
PERFORMANCES BY Giordano Dance Chicago, Hubbard Street Dance Chicago, Joffrey Ballet, River North Dance Chicago, Ensemble Español Spanish Dance Theater and Visceral Dance Chicago WORLD PREMIERES BY Randy Duncan, and Harrison McEldowney & Jeremy Plummer BENEFICIARIES AIDS Foundation of Chicago, The Dancers’ Fund, Making A Daily Effort and Agape Missions Inc. GALA TICKETS $250-$600 | PERFORMANCE ONLY TICKETS $25-$75
www.DanceforLifeChicago.org
M ED I A PART N E R S
| 312-922-5812
/DanceForLifeChicago
@danceforlifeChi
PHOTOGRAPHY Sandro | DANCER Andrew Murdock, Hubbard Street Dance Chicago
5pm Hilton Chicago’s Grand Ballroom 8pm Auditorium Theatre of Roosevelt University
c o n t e n t s June 2014
32 Cover Orange Is the New Black Star & Activist Laverne Cox Talks to A&U’s Sean Black About Fighting for Justice When It Comes to Healthcare & Strengthening Our Communities
Departments
Features 28 Gallery Photog Gerard H. Gaskin Explores What Makes Someone Legendary 26 Invitation to a Ball NYC’s Ballroom Community Serves Up AIDS Awareness Realness 38 Mended Heart Physician & Author Frank Spinelli Offers a Healing Strategy for Those Impacted by HIV 42 Know the Score Africa Goal Brings Testing & Treatment Resources to Soccer Fans 44 The Benefit of Friends The Stigma Project Campaigns for a World Free of Discrimination 18 Poetry Dirty Needle by T.J. Cheverie cover by Nino Muñez for Netflix
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Frontdesk
8
Mailbox
9
NewsBreak
19
Ruby’s Rap
Irene Soderberg
viewfinder 16
First Generation
24
Just*in Time
lifeguide 46
Treatment Horizons
48
Hep Talk
50
The Culture of AIDS
52
Lifelines
56
Survival Guide
A&U Frontdesk
Out Loud & Proud
J
ust the other day, a couple of friends of mine were talking about how they couldn’t wait for the second season of Orange Is the New Black, the hit television drama, currently available only on Netflix. I’m not surprised. It has the fastest growing fan base since AMC’s The Walking Dead. It’s that big. And its demographic is the one advertisers want, even though Netflix doesn’t accept advertising; their viewers have to pay to get their weekly fix. Who knew that a show featuring women behind bars would become such a hit? And who knew that one of its most compelling characters—played by this month’s cover girl, Laverne Cox, would become such a high profile star? What makes our cover au courant is that here is a trans woman who represents so many who don’t have a voice. Like most people, HIV has impacted her circle of friends. But even if it hadn’t, she would be talking about HIV and social justice, anyway. She is the type of activist, like the recently departed Maya Angelou [A&U, January 2001], who advocates for everyone and anyone who is experiencing stigma and discrimination. Laverne’s fame is both rewarding and a little bit gut-wrenching. Instead of playing it safe, she speaks to the reality that the transgender community has been disproportionately affected by HIV. She knows the rates of HIV infection are unacceptable and that she can use her familiarity to further educate and destigmatize HIV in this and other communities. According to recent studies from both CDC and UNAIDS many AIDS organizations are not fully engaged with the transgender community—and they lack the funds to provide appropriate prevention information. It’s as if the already marginalized transgender community is further marginalized by the stigma attached to living with HIV. Organizations should make it a priority to address the need for better ways to educate about the risk of HIV transmission when it is related to the fact that sharing needles (for injectable hormone therapy) is not understood and oftentimes completely ignored by service providers. The scary statistic that I read from the CDC is that nearly forty percent of trans women in urban centers are infected with
A M E R I C A’ S A I D S M A G A Z I N E issue 236 vol. 23 no. 6 June 2014 editorial offices: (518) 426-9010 fax: (518) 436-5354
HIV. And though this unacceptable fact may not do much to counter the widely accepted fiction that transgender women don’t care about themselves, we need to focus on a basic truth: Transgender individuals literally do not have access to the tools that would help lower the risk of HIV. That is, we’re still dealing with needle exchange programs that are not fully funded in this country. This isn’t happening in Australia (the site of next month’s XXth International AIDS Conference in Melbourne). Sharin’ needles isn’t a problem in that country—where the risk of HIV infection for injection drug users was quickly brought under control thanks in part to needle-exchange programs, which were launched in the AIDS era as far back as the late eighties. How many lives have been spared because of nonjudgmental thinking on the part of the Australian government? Since the late eighties, Australia’s transgender community has also had access to clean needles. It’s time that Americans show concern for the growing epidemic in the transgender community. It’s time for more folks to tune into Laverne Cox’s message: “When we talk about the [disproportionate] HIV transmission rate amongst trans women, so often it’s trans women of color.” Cox is not the only one giving voice to the barriers that stand in the way of access to safer sex information, prevention tools, testing, and treatment. In this issue, it’s plain to see across all of our articles that, like Cox, individuals and organizations are finding new ways to shake up medium and message. Africa Goal, a non-profit based in East Africa, uses World Cup fever to raise AIDS awareness. The Stigma Project creates iconic and eye-catching posters. The ballroom community takes to the runway. And Project1VOICE, for its annual 1VOICE/1PLAY/1DAY event, is staging a reading of For Colored Girls along with a health fair. With allies like these, one thing is clear to me: Speaking out loud and proud about the fight against AIDS has become the new normal.
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, Mark Rebernik, 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. ©2014 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 12210-2743, USA
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A&U Mailbox
“David Burtka said something important about AIDS in your interview. He said, in part, ‘I’m worried about the generation under me. Some think that they can just take a pill each day and all will be fine. But that’s not the case! There are different HIV strains, and the drugs can affect each individual very differently.’ As I said, this is intelligence speaking.”
What a handsome couple actor and chef David Burtka [cover story, “Wrapping Up,” by Dann Dulin, April 2014] and Neil Patrick Harris make. They seem to be such a loving couple and taking good care of their kids. They are truly a credit to other gay and lesbian parents. Both are so talented and intelligent. I applaud their commitment to fighting AIDS. David said something important about AIDS in your interview. He said, in part, “I’m worried about the generation under me. Some think that they can just take a pill each day and all will be fine. But that’s not the case! There are different HIV strains, and the drugs can affect each individual very differently.” As I said, this is intelligence speaking. Thanks for a very uplifting interview. —Juan DeFontana Mountain Home, Idaho David Burtka talked about barebacking [condomless sex] and I totally agree with him on that subject. Even if you are using PrEP, it is still recommended you do so with condoms. Now, not everyone is going to use condoms every single time, but I’m glad there is another prevention tool out there. Nobody seems to know about it, though. I asked my gay friends
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and it was all very vague to them. I know you’ve done articles on PrEP in the past, but consider doing more! —Albert Cazzize Allentown, Pennsylvania
Gimme Shelter In my book the Desert AIDS Project is one of the best AIDS organizations in America [“Resident Good,” by Sean Black, April 2014]. I was really moved by the story on Hudson Mark and his pet dog Taxi, and how he was able to locate to affordable housing run by D.A.P. The picture alone is worth a smile and the smile on Hudson’s face says it all to me. So many people with HIV/AIDS cannot afford to live in a place like the Vista Sunrise Apartments. So many people are living in poor housing all across the country; it’s a question of buying food, paying utilities, paying for medicine, and other expenses to make life more livable. So many people living with AIDS live on the edge—their lives are being marginalized every day. But D.A.P. came through and gave people like Hudson Mark a reason to live. —Marcia Arnoffsy Virginia Beach, Virginia
Dining for Dollars Ted Allen is a really fun guy; I love watching his show, Chopped [“Full Plate,” by Alina Oswald, April 2014]. I have several of his books and I subscribe to many of the food magazines. He makes cooking so much fun for everyone. I am so gratified that he got involved with Dining Out for Life. It’s such a worthy organization and it’s such a great way to raise money in the fight against AIDS. All you have to do is go out to your favorite restaurant and sit down and eat your favorite food. How easy is that? I just love you, Ted Allen. —Alicia Bridewell Spokane, Washington 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 • JUNE 2014
photo by Annie Tritt
Winning Recipe
NEWSBREAK Calling My Children Gail Farrow passed away from AIDS-related causes in 1989, leaving behind a husband, Ronald Watson, and four sons, Ronald, Jr., Frank, Kenny, and Benny. Award-winning photojournalist and filmmaker David Binder was with her and her family for a year and a half, every day, documenting the last year of her life and the period after her death, as her family came to grips with their loss. That loss was tempered by the fact that Gail, dictating to a hospital nurse, wrote letters to her sons. She was determined that, long after she had died, her words and wisdom and love would remain. The family—her family—would know a mother’s love, though differently than most. And she agreed to the photo essay project for the same reason. The series of photographs capture Gail in the midst of caring for her children as she struggles with her health, having contracted Clockwise from top left: Gail and son HIV through a blood transfusion during a cancer treatment. The Son watches photographs show the small joys of family life and the looming Top: Gail cleans her catheter in preparation of the sorrows, too, as she soldiers on, and, in her words, tries not to die, twins’ birthday. 1988. tries to be there for her children. The photographs follow her family after her death—trips to her grave, a first Christmas without her, a small triumph Left: Gail tries to keep her strength as she and Ronon the basketball court. ald get Ronald Jr. and Frank dressed for the first day This first series was published in magazines, In Health and Hippocrates. of school. 1989. Binder has continued to check in with the family every ten years, through photos (the 1998 installment appeared in Life Magazine) and then film, Photos © David Binder. All rights reserved with his award-winning short documentary film, Calling My Children. The film has engaged audiences at film festivals and events, even screening at the United States Capitol during the International AIDS Conference in 2012. PBS stations around the country have broadcast and rebroadcast his film during the month of May in part to honor Gail’s life and legacy as a mother. Each update provides a new chapter in this ever-changing family chronicle. Now, Binder is reuniting with the family. Gail’s children are now the age of her and her husband when the project first started; her and her husband’s children now have children around the same age they were back then. This ten-year update has been envisioned as a feature-length documentary film. A&U: PBS’s recent rebroadcast of 2009’s Calling My Children means even more people have been introduced to Gail and her family. Why do you think this project is so enduring with viewers? David Binder: People find the story so recognizable and relatable. They are engaged with Gail on a personal level as a mother knowing she won’t be around for her children, and they are engaged with the kids in feeling their heartbreak and lament. In a 2012 interview with A&U, you talked about a possible follow-up in 2018, saying, “It’s really up to them. I said [to Frank], ‘We’re getting close to maybe doing the next update,’ and he said, ‘Yeah, you know, you should really be in the next one.’ So, from what I said before about not wanting to be a part of it at all, I can think about it JUNE 2014 • A&U
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COMPLERA is a prescription medicine used as a complete HIV-1 treatment in 1 pill a day. It is for adults who have never taken HIV-1 medicines before and who have no more than 100,000 copies/mL of virus in their blood. COMPLERA can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL) and whose healthcare provider determines that they meet certain other requirements. COMPLERA does not cure HIV-1 or AIDS.
Just the
one
for me
COMPLERA is a complete HIV-1 treatment in only 1 pill a day. Ask your healthcare provider if COMPLERA may be the one for you.
Pill shown is not actual size.
What is COMPLERA?
COMPLERA (emtricitabine 200 mg, rilpivirine 25 mg, tenofovir disoproxil fumarate 300 mg) is a prescription medicine used as a complete HIV-1 treatment in one pill a day. COMPLERA is for adults who have never taken HIV-1 medicines before and who have no more than 100,000 copies/mL of virus in their blood (this is called ‘viral load’). COMPLERA can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL) and whose healthcare provider determines that they meet certain other requirements. COMPLERA combines 3 medicines into 1 pill to be taken once a day with food. COMPLERA is a complete single tablet regimen and should not be used with other HIV-1 medicines. It is not known if COMPLERA is safe and effective in children under the age of 18 years. COMPLERA does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.
IMPORTANT SAFETY INFORMATION What is the most important information I should know about COMPLERA?
COMPLERA can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking COMPLERA, your hepatitis may suddenly get worse. Do not stop taking COMPLERA without first talking to your healthcare provider, as they will need to monitor your health. COMPLERA is not approved for the treatment of HBV.
Who should not take COMPLERA?
Do not take COMPLERA if you: • Take a medicine that contains: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol), oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek), rifabutin (Mycobutin), rifampin (Rifater, Rifamate, Rimactane, Rifadin), rifapentine (Priftin), dexlansoprazole (Dexilant), esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), omeprazole (Prilosec), pantoprazole sodium (Protonix), rabeprazole (Aciphex), more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate, or the herbal supplement St. John’s wort. • Take any other medicines to treat HIV-1 infection, or the medicine adefovir (Hepsera).
starting treatment with COMPLERA. If you have had kidney problems, or take other medicines that may cause kidney problems, your healthcare provider may also check your kidneys during treatment with COMPLERA. • Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: feeling sad or hopeless, feeling anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself. • Changes in liver enzymes: People who have had hepatitis B or C, or who have had changes in their liver function tests in the past may have an increased risk for liver problems while taking COMPLERA. Some people without prior liver disease may also be at risk. Your healthcare provider may do tests to check your liver enzymes before and during treatment with COMPLERA. • Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking COMPLERA. The most common side effects of COMPLERA include trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression. Other common side effects include vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles), and pain. Tell your healthcare provider if you have any side effects that bother you or do not go away.
What should I tell my healthcare provider before taking COMPLERA?
All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, mental health, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking COMPLERA without first talking with your healthcare provider. • If you take antacids. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA. • If you take stomach acid blockers. Take acid blockers at least 12 hours before or at least 4 hours after you take COMPLERA. Ask your healthcare provider if your acid blocker is okay to take, as some acid blockers should never be taken with COMPLERA. • If you are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking COMPLERA. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in COMPLERA can pass into breast milk, and it is not known if this can harm the baby. •
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
What are the other possible side effects of COMPLERA?
Serious side effects of COMPLERA may also include: • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood tests to check your kidneys before
Learn more at www.COMPLERA.com
Brief Summary of full Prescribing Information COMPLERA® (kom-PLEH-rah) (emtricitabine 200 mg, rilpivirine 25 mg, tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information. What is COMPLERA? • COMPLERA is a prescription medicine used as a complete HIV-1 treatment in one pill a day. COMPLERA is for adults who have never taken HIV-1 medicines before and who have no more than 100,000 copies/mL of virus in their blood (this is called ‘viral load’). Complera can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL) and whose healthcare provider determines that they meet certain other requirements. • COMPLERA is a complete regimen and should not be used with other HIV-1 medicines. HIV-1 is the virus that causes AIDS. When used properly, COMPLERA may reduce the amount of HIV-1 virus in your blood and increase the amount of CD4 T-cells, which may help improve your immune system. This may reduce your risk of death or getting infections that can happen when your immune system is weak. • COMPLERA does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. What is the most important information I should know about COMPLERA? COMPLERA can cause serious side effects, including: • Build-up of an acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take COMPLERA or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: – feel very weak or tired – have unusual (not normal) muscle pain – have trouble breathing – having stomach pain with nausea or vomiting – feel cold, especially in your arms and legs – feel dizzy or lightheaded – have a fast or irregular heartbeat • Severe liver problems. Severe liver problems can happen in people who take COMPLERA. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: – your skin or the white part of your eyes turns yellow (jaundice) – dark “tea-colored” urine – light-colored bowel movements (stools) – loss of appetite for several days or longer – nausea – stomach pain
• You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time. • Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take COMPLERA, your HBV may get worse (flare-up) if you stop taking COMPLERA. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. COMPLERA is not approved for the treatment of HBV, so you must discuss your HBV with your healthcare provider. – Do not run out of COMPLERA. Refill your prescription or talk to your healthcare provider before your COMPLERA is all gone. – Do not stop taking COMPLERA without first talking to your healthcare provider. – If you stop taking COMPLERA, your healthcare provider will need to check your health often and do blood tests regularly to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking COMPLERA. Who should not take COMPLERA? Do not take COMPLERA if you also take any of the following medicines: • Medicines used for seizures: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal); phenobarbital (Luminal); phenytoin (Dilantin, Dilantin-125, Phenytek) • Medicines used for tuberculosis: rifabutin (Mycobutin); rifampin (Rifater, Rifamate, Rimactane, Rifadin); rifapentine (Priftin) • Certain medicines used to block stomach acid called proton pump inhibitors (PPIs): dexlansoprazole (Dexilant); esomeprazole (Nexium, Vimovo); lansoprazole (Prevacid); omeprazole (Prilosec, Zegerid); pantoprazole sodium (Protonix); rabeprazole (Aciphex) • Certain steroid medicines: More than 1 dose of dexamethasone or dexamethasone sodium phosphate • Certain herbal supplements: St. John’s wort • Certain hepatitis medicines: adefovir (Hepsera), lamivudine (Epivir-HBV) Do not take COMPLERA if you also take any other HIV-1 medicines, including: • Other medicines that contain tenofovir (ATRIPLA, STRIBILD, TRUVADA, VIREAD) • Other medicines that contain emtricitabine or lamivudine (ATRIPLA, Combivir, EMTRIVA, Epivir, Epzicom, STRIBILD, Trizivir, TRUVADA) • rilpivirine (Edurant) COMPLERA is not for use in people who are less than 18 years old. What are the possible side effects of COMPLERA? COMPLERA may cause the following serious side effects: • See “What is the most important information I should know about COMPLERA?” • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking COMPLERA. If you have had kidney problems in the past or need to take another medicine that can cause kidney problems, your healthcare provider may need to do blood tests to check your kidneys during your treatment with COMPLERA. • Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: – feeling sad or hopeless – feeling anxious or restless – have thoughts of hurting yourself (suicide) or have tried to hurt yourself • Change in liver enzymes. People with a history of hepatitis B or C
virus infection or who have certain liver enzyme changes may have an increased risk of developing new or worsening liver problems during treatment with COMPLERA. Liver problems can also happen during treatment with COMPLERA in people without a history of liver disease. Your healthcare provider may need to do tests to check your liver enzymes before and during treatment with COMPLERA. • Bone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the main part of your body (trunk). Loss of fat from the legs, arms and face may also happen. The cause and long term health effect of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having any new symptoms after starting your HIV-1 medicine. The most common side effects of COMPLERA include: • Trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, depression Additional common side effects include: • Vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles), pain Tell your healthcare provider if you have any side effect that bothers you or that does not go away. • These are not all the possible side effects of COMPLERA. For more information, ask your healthcare provider. • Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. What should I tell my healthcare provider before taking COMPLERA? Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, mental health, bone, or liver problems, including hepatitis B or C infection. • If you are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn child. – There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk to your healthcare provider about how you can take part in this registry. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take COMPLERA. – You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. – Two of the medicines in COMPLERA can pass to your baby in your breast milk. It is not known if this could harm your baby. – Talk to your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements: • COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works. • If you take certain medicines with COMPLERA, the amount of COMPLERA in your body may be too low and it may not work to help
control your HIV-1 infection. The HIV-1 virus in your body may become resistant to COMPLERA or other HIV-1 medicines that are like it. • Be sure to tell your healthcare provider if you take any of the following medicines: – Antacid medicines that contain aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA. – Certain medicines to block the acid in your stomach, including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine hydrochloride (Zantac). Take the acid blocker at least 12 hours before or at least 4 hours after you take COMPLERA. Some acid blocking medicines should never be taken with COMPLERA (see “Who should not take COMPLERA?” for a list of these medicines). – Medicines that can affect how your kidneys work, including acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex), and valganciclovir (Valcyte). – clarithromycin (Biaxin) – erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone) – fluconazole (Diflucan) – itraconazole (Sporanox) – ketoconazole (Nizoral) – methadone (Dolophine) – posaconazole (Noxafil) – telithromycin (Ketek) – voriconazole (Vfend) Know the medicines you take. Keep a list of all your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. Do not start any new medicines while you are taking COMPLERA without first talking with your healthcare provider. How should I take COMPLERA? • Stay under the care of your healthcare provider during treatment with COMPLERA. • Take COMPLERA exactly as your healthcare provider tells you to take it. • Always take COMPLERA with food. Taking COMPLERA with food is important to help get the right amount of medicine in your body. A protein drink is not a substitute for food. If your healthcare provider decides to stop COMPLERA and you are switched to new medicines to treat HIV-1 that includes rilpivirine tablets, the rilpivirine tablets should be taken only with a meal. Keep COMPLERA and all medicines out of reach of children. This Brief Summary summarizes the most important information about COMPLERA. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about COMPLERA that is written for health professionals, or call 1-800-445-3235 or go to www.COMPLERA.com. Issued: December 2013
COMPLERA, the COMPLERA Logo, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, TRUVADA, VIREAD, and VISTIDE are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. ©2014 Gilead Sciences, Inc. All rights reserved. CPAC0098 02/14
NewsBreak
now, if he thinks it would be a good thing.” I have started the next installment, and I am including myself in some ways. I’m still uncomfortable about doing this. I don’t want the attention on me at all, and I certainly don’t want to be the subject of this story at all. I do appreciate that my relationship with the family, and how I’ve continued this project for twenty-seven years, is interesting, but I want to ensure that they remain the focus of the story. What prompted this new installment and how do you see it fitting in with the series? I’ve produced installments every ten years. The next ten-year marker is approaching. I’ve talked with everyone to see what they think about doing it and they all very much want to do it. I’m particularly thrilled about this next installment because these children are now young men about the same ages that their parents were when the project began. And some of them have kids of their own who are around the same ages that they were all those years ago. So it’s a particularly poignant time in their lives. Recent movies like Dallas Buyers Club, The Normal Heart, and How to Survive a Plague seem to champion “the activist.” How do you see this project in relation to representing the experiences of those living with and affected by AIDS? I don’t know about that. I think that the reason Gail is so relatable is because she wasn’t an activist in that way. She was a mother. And her kids, while involved, are not activists, either. So it’s a different story. It is interesting that these stories about the early days of AIDS are now popular culture pieces. It proves that everyone involved in the cause in those early days were right in their advocacy and their unwillingness to be passive. It’s a strong message. I know you launched a Kickstarter campaign that ended early this month. Are there other ways for people to help support the project? Yes, absolutely, and thanks for asking. We continue to need help funding this project. I have had wonderful support over the years, but most of this has been possible from my own resources. So please, we need help. Contributions can be made through the link on the film’s Web site. For more information about the project and how to support it, log on to: www.callingmychildren.com.
Adriana Bertini [A&U, July 2005], a self-titled artivist (that’s artist plus activist), is headed to AIDS 2014 in Melbourne, Australia, with her condom couture in tow. For nearly two decades, Bertini has been creating and exhibiting vibrant and vital couture dresses, skirts, and suits out of quality-test-rejected or expired condoms as a way to destigmatize the prevention tool and change the dialogue about “what to wear.” Inspired to combine art and activism by her volunteer work at an AIDS organization in the nineties, Bertini has been raising awareness through condom couture at exhibitions at the United Nations and at International AIDS Conferences, as well as galleries and museums; fashion catwalks; social actions, lectures, and now workshops. “At the beginning of my work I believed in the power of fashion as an agent of behavior change for condom use and anticipated much from fashion shows and exhibitions to draw attention to condom use,” Bertini, a native of Brazil, tells A&U. “Today I believe we have to popularize the handling of condoms through condom art workshops. [How do we expect] people to change behavior and use condoms effectively if most people are not familiar with the object before intercourse?” The hands-on workshops engage participants in a learning experience that approaches sexuality as a critical space—a space where questions may be asked and issues, such as negotiating sex and condom use, may be explored in culturally tailored ways. In this way, latex, health and enlightenment are combined in a playful, creative way so that participants can form new feelings about identity and strengthen their self-esteem, particularly in relation to how they understand themselves as agents of change when it comes to caring for—and making decisions about—their own bodies and becoming involved in their own communities. Empowerment is literally self-fashioned. The expected outcomes of the workshops include the promotion of condom-use by advocating STD and HIV/AIDS prevention; the education of communities and societies at risk; an encouragement of condom-use negotiation; and a demystification of taboos and prejudices related to the topic of sexuality. The condom art workshop as a tool, says Bertini, is especially important in communities where dialogue is difficult because of religion and/or beliefs. Bertini has brought her workshop to UCLA Art, University of California, Los Angeles; the Parish Community Action Colonial Garden, an NGO in São Paulo, Brazil; and the High School for International Arts Business, Brooklyn, New York, among other sites. Workshops are offered to educational institutions, public and private firms, unions, NGOs, and others involved with the issue of sexuality. Her other projects include working as a volunteer with Amnesty International since 2011 as a guest artist of its END FGM (Female Genital Mutilation) campaign. Asked what she is looking forward to at the International AIDS Conference, when five condom dresses will be exhibited as “Dress Up Against AIDS,” Bertini responds: “Having an overview on new methodologies to prevent AIDS in the world. Presenting my work to this critical public for the purpose of learning….Expanding the global network against HIV/AIDS.” For more information, log on to: www.adrianabertini.com.br and facebook.com/condomcouture.
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photos by Cristiano Sérgio/FotoForum
Say Yes to the Dress
A&U • JUNE 2014
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lifeguide
Been There, Done That!
S
ometimes our worst enemies are ourselves. I’m as guilty of this as the next person. I grew up as a somewhat obedient little Catholic boy, even serving as an altar boy. The rules and expectations were so ingrained into me that challenging or even questioning anything I was taught or told would lead to big trouble in the least, and the threat of going to HELL if I continued my inquiries, or really screwing up. I later abandoned all organized religion as the dogma was all too confining, and it just didn’t work for me. And I’ve never looked back. (I do, however, respect those who believe and worship.) But the “lessons” I had heard and learned were already deeply implanted in my head. I assumed anything I didn’t want in my head would just go away if I worked at not thinking about it hard enough, which is pretty childish and stupid, actually. I only bring this up to demonstrate how gullible we can be; how easily we hold on to things we’re told or taught even when these things are not true or harmful. When I found out I was HIV-positive back in 1988, there was a tornado of misinformation and downright lies about HIV/AIDS: how it was transmitted; how fast anyone infected would die; those infected deserved to die. That one was the toughest to hear over and over like a mantra by some politicians, members of the clergy, even members of our own communities and families. While it may have been repeated out of fear, that didn’t make it easy to hear. Those of us who found out we were poz back then remember the feelings of fear, loneliness, and isolation—especially if you didn’t live in a major city with at least some services and support. Lately, a lot has been written and discussed about the HIV Stigma campaign or “movement.” We’ve made great strides in thirty years; especially when you consider the fact that in those early years of the epidemic we didn’t have the Internet or cell phones or on-line social media. When you think about it, it was an amazing accomplishment: angry, terrified queers banding
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together out of a need for survival; fighting for medications and other treatments; organizing groups that were initially underground like ACT UP, Queer Nation, and others to make our presence known and demand changes in how we were treated— that we were human beings entitled to dignity and respect, not to mention having the right to live. It took some time, and while we’re farther ahead than we were thirty years ago, we do have a long way to go. But we did it all while many of us were miserable and the disease was already devouring us. We literally dragged or carried each other at times to marches and protests! But thirty years later—having experienced everything I thought one could experience sans death itself—I seem to be going through something unexpected at this stage of my life. I had worked through the “HIV stigma” I originally felt many, many years ago with the help of a couple of therapists and a support group of other HIV-positive people at different stages of the illness. However, after all those years of self-searching, and especially forgiving myself for the shame and guilt of being both gay and HIV-positive, some of those old feelings are creeping back into my head. There are days it actually feels like I’ve gone full circle, and the weight is overwhelming at times. All I have to do is catch someone looking at my withered, distorted body when I’m out, or see my own reflection in the mirror in the morning, and all I want to do is go back to bed for the day. My lab numbers are good: I’m “undetectable” and feeling fine. But thirty years of trial and error medications have taken their toll, and I look and feel like such a monster, which serves as a constant reminder that I’m “sick” in the eyes of society, not to mention my own sunken eyes. I can’t help feeling miserable and exhausted, and those closest to
me don’t get it. Am I the only “old-timer” feeling this way? Is anyone else out there struggling too? I know I should feel lucky and grateful. But I thought I had dealt with all of this in the beginning. I certainly didn’t expect it to come swooping in again at this age. “Newbies” have so many resources at their disposal. They’re very, very lucky, and I’m extremely happy for them—well, maybe a little resentful. (Wow! Just typing that sentence leaves a horrible taste in my mouth! But I have to be honest.) The truth is they’ll never know the struggles and agony we all went through before most of them were even born. This generation gap is extremely wide. Maybe HIV Stigma is something we have to face and tackle throughout our lives. I’d like to think it gets easier, but I thought I had tackled it and wouldn’t have to deal with it at all, ever again. So much for that. It just might be time to see a therapist again, or at least find the elusive support group of middle-aged folks with HIV/AIDS. I don’t want to waste the time I have feeling miserable, lonely, guilty, or shameful. BEEN THERE! DONE THAT! Along with being a contributing writer for A&U, Chuck’s had other work published in journals, magazines, anthologies, and e-books. A&U • JUNE 2014
illustration by Timothy J. Haines
stigma, like history, seems to have a tendency to repeat itself
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Dirty Needle
I
i had a dirty needle, y’all it was in my head & it was in my heart. i was mainlining that ignorant shit, y’all the kind they sell from the pulpits, you know? the kind they propagate in those best-sellers. so i pulled it out, y’all i pulled it out & i injected myself with Knowledge. i injected myself with the Truth. i found it in the library at the end of my street. —T.J. Cheverie
T.J. Cheverie is an emerging Canadian poet living in Pemberton, British Columbia. In 2012, he won the Mayor’s Poetry Challenge in Whistler for his poem “Time.” More recently, he has been published in several literary journals and magazines. He is currently hard at work dreaming and contributing daily to the human story.
A&U • JUNE 2014
IRENE SODERBERG
ruby illustration by Davidd Batalon; photo by Carlo Cappomazza
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hen my pal Joey, who owns Latitude 33 restaurant, Asian fusion with New Mexican influences and ingredients, in Truth or Consequences, New Mexico, told me about a friend of his who’s participated, produced, or performed in over one thousand AIDS benefits, I said, “Beat me a path to her door, Darling!” When I arrive at Irene Soderberg’s abode in West Hollywood (the first environmentally green building in the dynamic city), she welcomes me with open arms. From the get-go, this singer, comedian, actor is charismatic, bursting with charm, and filled with a zest for life! “The Fairy Godmother,” as Irene is known, is of Finnish descent (she taught her parents English and she speaks five languages), and was raised on a farm in a wee town in Washington. Irene worked in the fields from the time she was eight, as the family lived off the land raising cattle, growing veggies, and even churning their own butter. Irene had a holistic upbringing and her mom was a psychic healer. Nearly twenty-five years ago she was diagnosed with HIV (having been infected by her former husband), and decided to not go the Western route for treatment. She’s never taken any HIV medication. We convene in her bubbly living room, with photographs, collages, and art fabric hanging on the walls. Her new CD, Irene Soderberg, along with her previous release, This Is My Life, lies on the coffee table and a sewing machine sits nearby, where Irene stitches many of her stage clothes. Ruby Comer: So, tell me about your decision to not take the meds, Irene. Irene Soderberg: I had a doctor who tried to put me on HIV medication, believing she knew what was best. I’d done research since 1982 and knew more JUNE 2014 • A&U
about HIV therapies and their side effects than most doctors. My health was so good that I refused. I found another doctor who respected my holistic, alternative choices. By doing my vitamin/herbal regimen, it’s kept my T-cell count very high and my viral load undetectable. I have that capacity [to do it on my own] and I choose to heal through music, laughter, and connection to hearts. When I’m on stage, I feel connected with the audience and they do too. [She shoots a sharp smile my way, then adds]…I get tested every six months at The Lesbian and Gay Center here in Los Angeles. It’s full-tilt elation to feel empowered…. [She nods passionately.] Many people rely on what doctors say. Educate yourself! Knowledge is power. Research all the alternatives rather than taking pills for everything. It’s your body! I couldn’t have said it better myself, sister. Listen, I want to know more about your husband, your initial diagnosis, and the
impact it had on you. My initial diagnosis was the first night I spent with Mark. It seems crazy, but that first night in April we went home together, I viscerally knew/felt it that night. I married him eight months later, because of it. I was on that ride and there was no turning back. I spent two years thinking I was about to die, then I left him, and set out to live my life in the most positive and inspiring way that I could! Great Gatsby, good for you! What accounts for your continued motivation to perform at AIDS fundraisers? Losing over 300 friends between 1982 and 1990. [She pauses and peers out the window that looks over the trees clear to the Pacific Ocean.] When I moved to Hawaii in 1982 and started working at Hamburger Mary’s, I acquired many gay friends. One of them was a doctor from San Francisco. One day he said to me, “See all those beautiful men laying there on Waikiki beach, Queen’s Surf? Fifteen of continued on page 52
19
Get
engaged! A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities
Join
Amplify the voice of PLWH in DC and around the country by joining the Pozitively Health Coalition at www.HealthHIV.org.
Engage Help us understand the needs of PLWH by taking the Pozitively Healthy survey at www.HealthHIV.org.
Connect E-mail or call Pozitively Healthy Staff: Joseph Jefferson: Joseph@HealthHIV.org Julio Fonseca: Julio@HealthHIV.org 202-232-6749 Facebook.com/PozitivelyHealthy @HealthHIV YouTube.com/HealthHIV
is a project of
A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities
Announcing
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A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities Are you concerned how health care reform will affect you?
Do you want to empower PLWH to make pozitively healthy decisions?
Join
Would you like to become a better informed consumer?
today! A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities
A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities
EMPOWERMENT through EDUCATION and ADVOCACY Empowered consumers are healthier consumers. Empowered consumers engage in a dialogue with their providers about their health goals and treatment plans. Consumer education helps PLWH recognize high quality, stigma-free health care and empowers them to take full advantage of health care reform. Educated consumers can effectively advocate for equitable treatment throughout the health care system. Effective advocacy by educated and empowered consumers helps ensure that competent, affordable, and effective health services and treatment are more accessible.
‘‘
Pozitively Empowering I am a 53-year-old Black gay man who has been HIV-positive for the past 25 years. I am dedicated to working with and advocating for youth, so that they may not have to endure the pain and hardships I have experienced. My involvement with Pozitively Healthy allows me to work with a diverse group of individuals on a personal, meaningful, and shared cause. I treasure the opportunity to be a positive influence and to help empower all HIV consumers. My passion for helping others has led me to join a number of advocacy groups, as well as found Brothers Reaching Others, Inc. (BRO), which provides resources, educates clients, empowers individuals, develops skills, engages others, and disseminates information to disenfranchised and impoverished communities.
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Edward Jackson, CEO, Brothers Reaching Others, Anniston, Alabama
Pozitively Healthy National Steering Committee
Brandon Aversano George Washington University Washington, DC
David Brakebill Florida Keys HIV Community Planning Key West, FL
Matthew Lesieur VillageCare New York, NY
Stephen Bailous Metropolitan Washington Regional Ryan White Planning Council Washington, DC
Robert Caldwell The Tauri Group, Biowatch Systems Program Office Washington, DC
Andrew Hartman Lt. Joseph P. Kennedy Institute of Catholic Charities Washington, DC
Judi Billings Targetted Alliances Puyallup, WA
Andrew Espinosa Midwest AIDS Training + Education Center Chicago, IL
Angel Hernandez Orocovis, PR
Mark Fischer Values in Action
Edward Jackson Brothers Reaching Others, Inc. Anniston, AL
leads to ACCESS to better care and improved health.
‘‘
Pozitively Educating and Advocating My involvement with Pozitively Healthy is rooted in understanding the history of the HIV movement, and my desire to diminish the emotional and social suffering PLWH experience due to ignorance and judgment. I see stigma as one of the largest barriers to testing and treatment. We need to change the way HIV is understood in public discourse; HIV is a virus and a public health issue. My long-term vision for Pozitively Healthy is to one day look back at the victory over stigma and judgment and see an enlightened and accepting society that recognizes HIV as a medical issue as opposed to a moral one.
ʼʼ
Ann Stuart Thacker, Executive Director, AIDSNET, Bethlehem, PA
‘‘
Pozitively Improving Access to Better Health As a gay man born during the height of the HIV/AIDS crisis, I never would have guessed that nearly 30 years later that stigma, barriers to quality heath care, and undue suffering would still exist for so many members of my community. Heroic efforts and huge advancements in science have been made; however, we have seen little progress in addressing not only the stigma of being HIV-positive, but also the legal and emotional ramifications of intolerance and misinformation. It is because of this uphill battle for PLWH that I have chosen to advocate on behalf of myself, my friends, and my community by joining Pozitively Healthy. It is because of those men and women who fought during the early days that I’m able to now lend my voice in support for those will come after me. Bryce Romero, Consumer Marketing Assistant, Human Rights Campaign
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Pozitively Healthy advocates and educates so that the HIV community is and remains Pozitively Healthy
Angel Lozada Pittsburgh, PA Randal Lucero National Quality Center, Consumer Advisory Committee New Mexico Aging & Long-Term Services Department’s HIV/AIDS Advocacy Network Albuquerque, NM Oliver Martin, III National United Church of Christ HIV and AIDS Network Green Bay, WI
Eric Martinez Positive Mind & Body Support Group Net Vero Beach, FL Butch McKay Okaloosa AIDS Support and Informational Services, Inc. (OASIS), Fort Walton Beach, Florida Mark Peterson Michigan Positive Action Coalition (MI-POZ) Detroit, MI
Bryce Romero Human Rights Campaign Washington, DC
Ann Stuart Thacker AIDSNET Bethlehem, PA
David Sheon Whitecoat Strategies, LLC Washington, DC
Tim Vincent California STD/HIV Prevention Training Center Oakland, CA
John Tenorio Pueblo Community Health Center EIS Program Canton City, CO
David Waggoner A&U, America’s AIDS Magazine Albany, NY Channing Wayne Larkin Street Youth Services
Hey dear
My name is Eric and my family is from Jamaica. I’ve been positive for about eight years now. I’m not proud of it but I just wanted to tell you. Well, when I tell people they almost always compliment me on how good I look. I just tell them that I take good care of myself. I go to the gym, stay active, take my vitamins and take my HIV medications. I used to be able to get my medications for free when I lived in Antigua but now I can’t. They are so expensive here and I’m only here for a couple of years but I’m thinking about moving to Canada. I just wanted to give you a background of me and my life. But I do have a couple of questions. There are reports that say HIV is a conspiracy and that we are giving our money away to government and drug companies that just want to get rich off of us. They do not care about our well being at all. Have you ever heard of David Crowe? —Eric Well, well, well…yes, of course, I’ve heard of David Crowe, but many of my readers probably have not. So let me introduce him, shall we? He is what we call in the HIV activism and advocacy world an HIV denialist.
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Since denialism has more of a negative spin as a label, they want to be called dissidents now. But it doesn’t matter what they are called—they are denying that HIV causes AIDS. David Crowe’s movement has done many a disservice by spreading his movement of denialism. The denialist movement has been known to go into nations that are not well educated on HIV. By doing this they are able to influence government officials into thinking that HIV medications are only toxic to the body and do not help with managing patients’ HIV. Crowe has traveled to many places, especially Africa, where he continues to spread his opinions about HIV. A lot of denialists do not believe that HIV is even a sexually transmitted disease. They believe that it can be treated by a healthy diet and exercise. Honestly, yes, it does help to manage your HIV by exercising and eating right, but it is not the only thing you have to do. Taking your medications is very important and I know firsthand how hard it is to have to take them every day. They can be very expensive, but I’d rather take my medications every day than have my body and mind wither away because I decided that I didn’t want to take care of myself. If
you want to stop taking HIV medication, I cannot stop you; all I can do is advise you to take them and see your doctor on a regular basis. HIV is NOT a conspiracy; the real conspiracy is someone spewing lies to other nations or groups of people to be able to take advantage of them. This is something that needs to be addressed; David Crowe and his followers have cost many people their lives, especially in countries that do not have a lot of HIV education. These people who blindly followed Crowe are not able to see that there are other options. Crowe is wrong and, in my honest opinion, he should be jailed for the thousands of lives he has affected. Eric, I have to warn you that I’ve seen friends deny the fact that they have HIV and decide to stop taking medication. My friends were my age and are now dead. I have to say that, if you go down this path and stop taking your medications, there’s a high probability of HIV overtaking you and turning into AIDS. Also, the chances of you being touched by more non-AIDS-defining illnesses are greater than if you were to stay on HIV medication. And I don’t want that for you or anyone. ◊
A&U • JUNE 2014
photo by Don Harris © Don Harris Photographics, LLC. all rights reserved
Justin B. Terry-Smith has been fighting the good fight since 1999. He’s garnered recognition and awards for his work, but he’s more concerned about looking for new ways to transform society for the better than resting on his laurels. He started up in gay rights and HIV activism in 2005, published an HIV-themed children’s book, I Have A Secret (Creative House Press) in 2011, and created his own award-winning video blog called, “Justin’s HIV Journal”: justinshivjournal.blogspot.com. Now, with this column, Justin has found a way to give voice to the issues that people write to him about. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at jsmithco98@hotmail.com.
“AN UNFLINCHING MASTERPIECE.” —DAVID LEVERING LEWIS, Pulitzer Prize–winning biographer of W.E.B. Du Bois
“Daringly imagined and beautifully written, Hold Tight Gently is a major work of
modern history that chills us to the bone even as it moves us to tears.” —MICHAEL BRONSKI, Professor of Women, Gender, and Sexuality Studies, Harvard University
“A
deeply moving work of largely hidden history.”
—BARBARA SMITH, author of The Truth That Never Hurts
“A powerful book that displays both the malice and the nobility of our species.” —Kirkus Reviews “This marvelous book will be read by activists everwhere—and empower the future.” —BLANCHE WIESEN COOK, author of Eleanor Roosevelt
“Funny and moving, enlightening and thoughtful, inspiring and enraging, this dual biography reveals the heartbreaking losses caused by the epidemic as well as the many ways people fought back.” —JOHN D’EMILIO, Professor of Gender and Women’s Studies and History, University of Illinois at Chicago
THE NEW PRESS
THE NEW PRESS Publishing in the Public Interest www.thenewpress.com
Invitation
to a
Ball S trike a pose. Vogue.” The command may have different connotations for individuals from different generations—a flashback to Madonna’s song, for some; and a dance form, for those too young to remember when the singer brought to the mainstream audience a form of dance that’s mainly associated with the ballroom community. The ballroom community (or the ballroom scene) is an underground LGBTQ subculture of mostly young individuals who do not have strong ties to a biological family or who have been kicked out of their homes. Members of the ballroom community take on the name of the specific house they become a part of—House of LaBeija, House of Latex, House of Ninja (founded by Willi Ninja) or House of Omni (founded by Kevin Omni Burrus). Those involved in the ballroom scene are often artistic individuals who express themselves through fashion, by creating glamorous outfits they wear when walking and voguing in judged events called balls. They walk in different categories, and sometimes win prizes and trophies. Those who walk in balls for at least ten years become legendary; after another decade, they become icons. But not all members of the ballroom community are homeless, and not all of
Milton Garcia Ninja
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AIDS Awareness Helps Bridge the Generation Gap in the Ballroom Community Text & Photos by Alina Oswald
them compete in balls, as I find out from German filmmaker and LGBTQ activist, Wolfgang Omni Busch. He was an integral part of this year’s International Ballroom Convention and Wolfgang Omni Busch (left) and Kevin Omni Burrus the House of Omni 35th Anleadership that I am looking for,” he says, niversary Ball that took place in New York explaining the absence, still, of a sequel to City, March 29 through April 5. his documentary. “Kevin [Omni Burrus] and I go back The purpose of this year’s convention since 1989. We both have an activism was not only to share the ballroom comand historic background,” Busch explains munity history and culture with the public, his choice of being a member of the but also to find new leadership for today’s House of Omni. Wolfgang Busch may be ballroom scene—hence, the topic of the best known for his 2006 documentary, convention, Bridging the Gap. The event How Do I Look, in which he captures the offered a stage for older and newer genervitality of the ballroom scene at that time. ations of ballroom dancers, also activists “Since How Do I Look has been released, and artists to get together and discuss ways we have lost so many legendary icons in which to empower their community. that have contributed tremendously to The convention also provided a safe place the ballroom community. The younger for an open and honest dialogue about the generation has not really been able to ballroom scene, and its connection to HIV live up to those same expectations, [and] and AIDS. doesn’t seem to have the same kind of The ballroom community has lost
Amber Drew of Housing Works
A&U • JUNE 2014
many creative people to the epidemic. And yet, while it has survived it, the ballroom scene is still one of the communities most affected by HIV/AIDS. So, it is not surprising that nowadays AIDS service organizations seek to connect with the ballroom scene, in order to reach those in need of testing, education, prevention, or medical services. That’s why Housing Works was present at the convention, offering free HIV testing, and also brief counseling sessions. It is also not surprising that it’s still vital to have a dialogue about HIV/AIDS with and within the ballroom community. In that sense, the convention did help reignite this much-needed conversation about HIV/AIDS as it relates to the ballroom community, a conversation that would continue well after the final night of the event. Some individuals associated with the ballroom scene avoid talking about AIDS. Others consider it vital, not only to have this discussion about AIDS and the ballroom community, but also to pass it on from one generation to the next. Gerard H. Gaskin is a photographer who has covered balls for twenty years [see Gallery, this issue]. Talking about his new book, Legendary: Inside the House of Ballroom Scene, he explains how he used his camera to capture the ballroom community and, ever so subtly, the subject of AIDS within the community. “I didn’t want to hit people on the head with anything,” Gaskin says, “but I wanted to touch on subjects that deal with [the AIDS] issue.” He points at a picture in his book, an image showing a person’s hands holding a condom, to suggest HIV prevention. Legendary Milton Garcia Ninja contracted HIV at the age of twenty-two. Now, at forty-three, he has survived his doctors’ prognoses, and become a mentor to those wanting to make a name for themselves in the ballroom scene and to those living with HIV today. “Death was so imminent, and it could happen at any moment for someone living with my virus at the time,” Garcia recalls, talking about the height of the epidemic. “Being diagnosed with HIV has been a tremendous wake-up call [for me],” he adds, “about learning to deal with humanity and respect between people, [and to see them] JUNE 2014 • A&U
not only as human beings, but also as spiritual beings, [because] we are spiritual beings living in a human existence.” A common feeling that washes over ballroom community members of an older generation is that of sadness to see history repeat itself—that is, to see individuals contracting the virus today, at the same young age as their friends were, back in the eighties. And they hold today’s complacency regarding HIV/AIDS responsible. But not all young people are complacent when it comes to AIDS. Amber Drew, Care Manager at Housing Works HOUSE Project, believes in the importance of grass-roots work, especially when it comes to HIV and the youth. She points out the duality between AIDS-related complacency and stigma, as a catalyst for the increasing HIV infection rates among the youth. She also brings into focus the distorted image of today’s AIDS, an image sketched out by misinformation in a time of social media, and, most importantly, by the lack of plain, old-fashioned conversation between partners. “No one ever talks about having [safe] sex, about condom use,” Drew reiterates. “And then you have people in their twenties come in, and they don’t understand how HIV affects [their] life, and [believe they know their status.]” Drew emphasizes that there is not only a lack of correct information available online, but also a depletion of services, because of lack of funding. That’s why HOUSE Project tries to access a particular demographic—individuals af-
Members of the House of BVLGARI fected by HIV, risky behavior, substance abuse, and mental health, especially those ages eighteen to twenty-nine—to provide them with a counselor, a doctor or any other kind of help, through outreach work. This is work that still needs to be done because, Drew says, “AIDS is no longer a death sentence, but stigma [that helps fuel the new infections] is still out there.” Truth is, the ballroom scene and HIV/ AIDS remain closely related to this day. AIDS is still often a taboo subject within the ballroom community, one that members of the community feel comfortable discussing only with individuals from their particular house. So, when it comes to HIV/AIDS as related to the ballroom scene, there is still work to be done. Some do this work by becoming mentors, and also by remembering those lost to the epidemic. They do it to ensure the legacy of those who’ve passed away from the virus, as well as a legacy of their own. To learn more about Housing Works, visit www.housingworks.org. Read more about Kevin Omni Burrus at www.iconkevinomni.com. For information about Wolfgang Busch, log on to: www.artfromtheheartnyc.org. Check out the work of Gerard H. Gaskin by logging on to: www.gerardhgaskin.com. Alina Oswald is a writer, photographer, and the author of Journeys Through Darkness: A Biography of AIDS. Contact her at www.alinaoswald.com.
27
THROUGH the
LENS Award-winning photographer Gerard H. Gaskin captures a then-and-now portrait of the AIDS pandemic
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by Alina Oswald
hile many may not recognize his name, photographer Gerard H. Gaskin has become a household name within the ballroom scene, which is an often-underground subgroup of the LGBTQ community. Born in Trinidad, Gaskin came to New York City at the age of eight. In 1993, he met someone who turned out to be Whitney Houston’s makeup artist, and who introduced the upand-coming photographer to the ballroom community. At the time, Gaskin was ready to graduate from Hunter College, where he was studying photography, and he decided that photographing balls would make a good subject for his graduation thesis. Yet, right after graduation, he did not pursue the subject any further. Instead, he spent the end of 1994 and most part of 1995 in his native Trinidad. His in-depth work capturing the ballroom scene started only after his return to the States. To this day, Gaskin still likes many aspects of photographing balls, he tells
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me over the phone. The most poignant, maybe, is that balls create “a space where people would come [and] be judged by their peers,” he says, “where they [can] be open enough to play out how they define their own sexual ideas, because I think there are moments when we can be very uptight about sexuality. And here, in America, being uptight about sexuality is a huge deal, [especially among those who are more] religious.” To Gaskin, balls provided a kind of access that no one else but a photographer would desire. That and making groundbreaking images, while documenting the ballroom scene, allowed
him to develop friendships within the community, friendships that, in turn, gave him even more behind-the-scenes access to the balls. “I think it was all those parts that kept me doing it,” Gaskin comments. “I love the energy of the [ballroom] space. I just kept on being a part of it.” His latest book, Legendary: Inside the House Ballroom Scene, published by Duke University Press, captures his twenty years of documenting the ballroom community in color, as well as in black-and-white. “Thirty percent of the pictures in black-and-white are of A&U • JUNE 2014
A&U Gallery those who have passed away, most of them from HIV,” Gaskin explains, recalling the names of those gone too soon—Gerald LaBeija, who, in the photograph, has a little hat with a little long feather in it; Danielle Revlon, who’s in a cab with a mink coat on; Mystery Dior, with a hat on his head; the person on the back cover of the book. “It’s a huge number of people.” After a short pause, he continues, “I remember these three people [who] Gerald, Prada Ball Manhattan, NY, 1999, digital ink jet print
passed away within six months, in 1999. That’s the pain....[I got] to the point that I didn’t want to go to balls anymore. Octavia San Laurent, Angie Xtravaganza...I can stand here and blurt out names, names that [only] ballroom people might know. [There’s] a tiny hole created by losing people who allowed me into their lives, to hopefully document, and create a project that ultimately is this book. [So, in Legendary] I’m trying to give voice to these people who have passed, and to give [the ballroom] community a space and a voice. I think this is one message that’s really important.” While Gaskin believes that it is important to pay homage to those lost to HIV/AIDS, he also uses his photographs to inform about HIV/AIDS; hence his color images, like the one of an individual holding condoms and HIV-prevention literature. “That was my little take on making sure that there was [an HIV] component [in my book,] a subtle reminder more than anything else, [so that] my viewers wouldn’t think that [HIV] doesn’t exist,” Gaskin explains. The photographer believes that the message needs to be subtle to protect the ballroom community from outsiders who might think that everybody in the ballroom community dies of AIDS-related causes or has an AIDS-defining illness, “because the outside world judges the ballroom scene in a way,” he comments. “It’s important [that the message is] subtle, when [bringing] up [these kinds of ] subjects in the ballroom scene. Like I have an image in my book, a portrait of someone who I think has done too much surgery. She has a sad look on her face....It’s the undertone. Especially JUNE 2014 • A&U
the femme queens, they go and get breast implants, and have all these backroom doctors, who are not really doctors, pump silicone into their bodies, and hormones that are not always up to code.” These subtle messages are present in Gaskin’s images, part of a real conversation that the photographer tries to have with his audience, so that the world would better understand the ballroom community. Today, he doesn’t photograph balls as much as he used to, but they have remained his first love, his “first real hard-
core project that I’ve worked on,” he says, “a set of pictures that I became, in some ways, famous for.” Using his camera to document life, in general, is part of who he is, because he grew up with documentary photography. When he was starting out, at the age of eighteen or nineteen, his idols were French photographer Henri Cartier-Bresson, considered the father of photojournalism, and Robert Frank, a Swiss photographer now living in Nova Scotia. Today, Gaskin uses his camera to docu-
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Clockwise from this page, top left: Mystery, Brooklyn, NY, 1999, digital ink jet print Jennifer, Evisu Ball, Manhattan, NY, 2010, digital ink jet print Danielle, Year End Ball Manhattan, NY, 1996, digital ink jet print
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A&U • JUNE 2014
A&U Gallery
ment many aspects of life, photographing for The New York Times, Metrosource, and Out Magazine, among others, and covering various campaigns for ad agencies. Campaigns such as HIV Stops With Me, which runs in New York, Virginia, California, and Alaska, and which he did for Better World Advertising. Gaskin explains that, “[Better World Advertising] go out and ask organizations to find people for them, [and then] turn these people, basically, into spokespeople [to] tell their HIV stories, so that the public [would] be informed.” Sometimes the spokespeople share their stories when in front of Gaskin’s camera. “When I would photograph them, they would talk to me,” he reiterates. “I remember we had a long conversation about the regimens, the amount of pills that they take, and stuff like that. [Some] people got infected recently, but some were infected years ago.” Having had the ability to capture the pandemic through the lenses of then and now, Gaskin contemplates on the ongoing transformation the “AIDS image” has gone through, over the years. “The thing that has changed, in a very good way, [is that] it kind of walked away from the idea that this is a gay disease,” he explains. “When I first started [photographing] campaigns, there were mainly gay men that I would photoJUNE 2014 • A&U
graph. And now it’s women. I remember two or three years ago I [photographed] these people in Virginia, and this country boy, he was on the down low. These pictures are much more different now than [the ones from] ten years ago, when I started working on these projects. More different [groups of] people are involved in the question around HIV [now]. And I’d say that it’s terrible that the majority of them are African Americans who are infected.” As part of campaigns like HIV Stops With Me, people go public about their HIV status. In other cases, they disclose their status to selected individuals. Hence, the question of disclosure arises. “It’s almost the same question that I used to have with transsexuals,” Gaskin explains. “Sometimes they [wouldn’t] want to tell that they had a complete sex change. I had a really good friend who was transsexual. And I would say to her, you know, you’re a role model, and you kind of have to see yourself as a role model. I’m not here to tell you that you have to tell everybody, but there needs to be a certain openness about it, because it helps everyone else. It helps the young person who’s coming out. And if you are articulate, people will see you in a very different way, and I think these are the things that are very, very important.” For Gaskin in particular, disclosure (at
the right time, in the right way, to the right person) is like bringing the truth into the light. It’s what he’s been trying to do as a documentary image-maker. As a photographer, Gaskin has won many awards-—for his covering the ballroom scene, for his book, and for his photography, in general. And yet, he’s uncomfortable talking about the subject. “The funny thing is that they give me awards,” he says “and I’m like what do they give me awards for? Because for me awards are really, really nice, not to say that I’m not happy to get [them, but] I’m very shy about being this person in the spotlight. I want that my pictures talk for me, because the people who ultimately allowed me to photograph them deserve these awards more than I do.” As a photographer, Gaskin is interested in stories about regular people, because, he says, “regular people don’t get enough credit. Hopefully, that’s what I’m trying to ultimately pull off, to give them a voice, and be part of their voice, because, hopefully, in the midst of it all, I’m saying something.” To learn more about Gerard H. Gaskin, visit him online at www.gerardhgaskin.com. Alina Oswald wrote about the ball community and HIV/AIDS awareness in this issue.
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On
Each Other’s
TEAM
Orange Is the New Black’s breakout star Laverne Cox strategizes the defeat of trans oppression, addresses femme-phobia within her own LGBT community and explains why eliminating HIV stigma from the playing field would be a major victory! by Sean Black photos by Nino Muñoz for Netflix
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his disease has been a rough one [for many of my friends],” compassionately shares the transgender civil rights activist and actor prominently known for her portrayal as Litchfield Penitentiary’s resident hairdresser, Sophia Burset. Her character, dosed with the precise amount of sass is incarcerated for using stolen credit cards on Netflix’s noir comedy series Orange Is the New Black. 33
“I was just having a conversation about HIV last night with the sister of someone I am dating,” says Cox. “We were talking about how so many young people don’t understand the enormity of this virus and what it can do to people’s lives. I don’t understand this—how so many young people, in their twenties, are not using condoms?” “I have spent my whole life in fear with the possibility of contracting HIV,” she confesses. “I have been terrified by it to be perfectly honest!” Today she channels her fear into action and educates publicly. The celebrity she is amassing from her mainstream television role gives her the valuable prime time she needs to reach those twenty-somethings at her off-screen speaking engagements. Laverne grew up in Mobile, Alabama, in the 1990s, a time when the terror of HIV was fresh and still seeping into public consciousness; hers too. She, like so many questioning youths, whether sexually active or not, was haunted by the what-ifs of AIDS and the death sentence it mostly was at that time. “I initially thought I might be gay, instead of trans, and I heard about how it [HIV] affected gay men,” she says. Raised with her twin brother by a single working-class mother, the lingering terror of the virus was only dampened by the teasing and bullying she was receiving at school. “I was called a sissy and I was called the f-word.” Being chased home and beaten up for being different she was taunted to the brink of a sixth-grade suicide attempt. Her resilience to endure has rewarded us with the remarkable and resolved person she is today. “I have been very blessed to have had people who love and support me,” she humbly shares. I think that love can be deeply healing.” Love is an imperative factor at play for Laverne; it is a staple in many of her public speeches. She is quick to mention too, her own self-care in tackling a lot of her early childhood traumas through acting workshops. She began with renowned acting coach Susan Batson. Through proactively seeking to improve her acting skills and release her anxieties creatively, she found a therapeutic inner healing over a decade ago that has helped her with moving beyond the bullying of her childhood and which ultimately prepared her to deal gracefully with the bigotry and ignorance she still faces today. “There is this thing about being an
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actor, part of the artistic process that requires [us] actors to delve more deeply into the depths of who we are as human beings, so that we can give ‘truth’ to our characters,” shares Cox who holds a degree in fine arts from Marymount Manhattan College. “It has helped me to uncover ‘stuff’ and to find ways in which to deal with it.” Like the ensemble writing of any well-scripted novel, play, or television show like Orange Is the New Black, her truths are not meant to be uncovered alone. As much as Laverne teaches others, she is open to the process of learning herself. About three years ago she began working with a new acting coach who introduced her to activist Jeremiah Johnson. Jeremiah is the HIV/AIDS Prevention Research & Policy Coordinator with Treatment Action Group (TAG) in New York, an independent AIDS research and policy think tank focused on accelerating treatment research. “Our mutual friend Brad Calcaterra runs this amazing program that helps performers work through the intensity of being raw and vulnerable in front of other people,” says Johnson. “When I was asked to do a TEDMED talk on fear and shamebased messaging early last
year, I reached out to Brad for advice on how to speak about such a personal and emotional topic in front of so many people—so he invited me to his workshop. Laverne was in that class—we bonded over our passion for social justice, and spent quite a few hours over coffee talking about the challenges facing transgender people and people living with HIV.” “Jeremiah is a dear friend of mine,” sweetly says Laverne. “He does a lot of AIDS advocacy work and he is [publicly] HIV-positive himself. A lot of our conversations are about how people are shamed who have HIV. He has this great [TEDMED] talk about fearful messaging tactics that are used in healthcare media to try to get people to practice safer sex. I’ve seen so many folks who I know and love shamed and stigmatized for having HIV—it is deeply, deeply painful for me.” Continuing, she says, “I have had some dear friends too who have passed away and I have some who are living with HIV— some trans folks and some gay folks. So it is a really personal issue for me.” Motivated once again by the pain of loss and determined to stand by her friends, Laverne has gotten involved, something that both pleases and impresses Jeremiah. “It is often not easy or simple to be an ally for a community that is highly marginalized and stigmatized, especially if you happen to belong to a marginalized community yourself. Laverne and I have discussed this before, and acknowledged that I don’t always know how best to be an ally for transgender people, and that she doesn’t always know the best way to show up for people living with HIV. But we both try to have the bravery to talk about that, to learn from each other, to show up for the fight, and to have each other’s back,” says Johnson, who greatly admires Cox’s ability to weave together a passion for social justice with her career. Having each other’s back is key if we are to make the type of critical progress we need as a united and powerful
LBGT movement regardless of whether we embody the “L” or the “T” of this equation. Laverne’s ground-breaking interview with Katie Couric sparked a necessary and long overdue mainstream media dialogue about “what is and what is not appropriate to ask trans people.” And she told us at The National Conference on LGBT Equality Creating Change 2014 that she was proud to be able to have Carmen Carrera’s back when questioned about her anatomy, which, Laverne stated, traditionally becomes the sensational “take-away” when summing up the
that it is mostly trans women of color.” Frequently, trans women of color are not only attacked for who they are on the street, but then subsequently punished for who they are by the justice system as well. Laverne mentions CeCe McDonald, whose story she’s telling in an upcoming film called Free CeCe, about a young African-American trans woman who was walking with a group of her friends when they were attacked by a group of whites casting racial, homophobic, and transphobic slurs. When confronting the attackers, CeCe was stabbed in the face with a glass, severing her salivary gland. A fight ensued leaving one of the attackers dead. Defending herself, CeCe was the only person arrested that night and placed in solitary confinement at a men’s jail where she ended up serving nine months of a forty-one month jail sentence for a reduced charge of 2nd degree manslaughter. CeCe was released from jail on January 13, 2014.
“When we talk about the [disproportionate] HIV
transmission rate amongst trans women, so often it’s trans women of color...”
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life experiences of people who are trans. “We don’t need to be fighting each other... there is enough spotlight to go around if we love each other,” she announced from the podium. “Laverne has really opened my eyes to all the ways in which transgender individuals are ‘erased’ from the record or punished for even daring to exist. Our conversations have heightened my awareness to the lack of transgender visibility in HIV/AIDS. Despite the fact that we know that transgender women are among the most vulnerable for acquiring HIV, the data we have collected on the topic is woefully inadequate,” warns Johnson. The CDC acknowledges the fact that because of inconsistent data collection, statistical information is lacking on the actual number of transgender people in the United States living with HIV. “TAG is presently working to push the CDC to take concrete steps toward providing transgender-specific data and reports on HIV/AIDS to better inform care, treatment, and prevention efforts in the U.S.,” reports Johnson. “When we talk about the [disproportionate] HIV transmission rate amongst trans women, so often it’s trans women of color,” alerts Cox. “When we talk about the disproportionate homicide rate in the LGBT community, we know that its trans women, but we also know
“When we talk about the disproportionate
homicide rate in the LGBT community, we know that its trans women, but we also know
that it is mostly trans women of color.” “When we look into CeCe McDonald’s story, we see that the first word when she was attacked was the ‘N’ word. So the very first thing that these white supremacists noticed was that CeCe and her friends were black, and then they noticed that they were queer and LGBT and trans.” Laverne reiterates with emphasis that CeCe was the only person arrested that night and that it took a year to arrest her attacker. “CeCe’s incarceration at a men’s prison, and in solitary, was an attempt to ‘disappear’ her. Free CeCe looks at all of those intersections of identity and oppression and the culture of violence against trans women.” Cox hopes that others do the work of self-care so that the cycle of oppressive violence ends. We need first of all to recognize where it comes from. “I think that whenever we have a problem with someone else we have it because we have a problem with our self. There are a couple things about discrimination
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Left: Laverne Cox as Sophia Burset in Orange Is the New Black, whose second season premieres June 6 on Netflix.
and oppression: There are some folks who are just power-hungry and want to keep power and keep people down. Then there are those who don’t really realize that what they are saying is problematic and that their discomfort with other people is really discomfort with themselves.” She continues: “There is this won-
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derful expression ‘hurt people hurt people’ and so often when we have trauma in our own lives we don’t know what to do with that pain so we discharge that pain onto others. I think a lot of the work [to be done] is to get right with ourselves so that we don’t discharge our own negative feelings onto each other.”
Laverne was recognized this past March at GLAAD’s 25th Anniversary gala with the Stephen F. Kolzak Award. Named in honor of the casting executive who dedicated the later part of his life to fighting homophobia and AIDS-phobia within the entertainment industry, the award is presented annually to an openly LGBT media professional who has made significant contributions by way of promoting equality within the LGBT community. Previous recipients include Sir Ian McKellen [A&U, October 1998], Ellen DeGeneres, John Waters [A&U, July 2011], and 2013 recipient, entertainment attorney and newly elected GLAAD co-chair Steve Warren. Laverne was named one of OUT Magazine’s “Out 100,” made Huffington Post’s top 50 trans icons, and has been included as one of Metrosource Magazine’s “55 People We Love.” Her critical writings have appeared in The Advocate and The Huffington Post. She is the first African-American trans woman to have a starring role on a major television outlet. At Creating Change 2014 she credited Candis Cayne [A&U, March 2009] in her 2007 recurring role on ABC’s Dirty Sexy Money for paving the way. “I would not be here without Candis Cayne,” Cox humbly concedes. A&U • JUNE 2014
Orange photos by Jessica Miglio for Netflix
Opposite page (left to right): Danielle Brooks, Lin Tucci, Natasha Lyonne, Yael Stone, Jackie Cruz, Emma Myles and Laverne Cox in a scene from Orange’s Season Two.
Laverne is the first trans woman of color to produce and star in her own GLAAD nominated television show, VH1’s TRANSForm Me and the first trans woman of color to appear on an American reality television program, VH1’s I Wanna Work for Diddy. She received the Dorian Rising Star Award for her role on Orange Is the New Black. Her approach to advocacy resists compartmentalizing. She extends her critical thinking across identities, seeking to bring to light all the ways people become marginalized or made invisible. “Most of us don’t fit neatly into the traditional gender-binary model. It’s either the men’s room or the ladies room,” weighs Laverne. The gender-binary model to which she refers perpetuates the notion that both sex and gender can be tidily packaged into one distinct gender classification. “The reality is that gender is so much more complicated than this,” she says. “I think a proper critique of binary gender should come with a feminist perspective.” She pauses then paraphrases something that she had heard Melissa Harris-Perry discuss recently on her MSNBC show. “We should be looking at certain issues through a feminist lens and asking who has been left out, who are we forgetting, and who are we missing?” “When I think about the LGBT movement today. I also think— who has been left out?” Laverne asks, seconding Perry’s insights. “Whose truths are we neglecting in terms of stories, in terms of lives and in terms of experiences. I agree. Those are the questions that we should be asking.” “Then I think about so many of the gay men that I know and love who’ve been told by other gay men that they are not masculine enough to date; that they only date ‘butch’ guys.” She adds, “These are butch guys where I come from, so I’m thinking to myself—if my friends aren’t butch enough then what exactly are these guys looking for, EXACTLY?” Laverne laughs and continues. “Julia Serano talks about scapegoating of femininity in her book, Whipping Girl. Amongst feminists this is a big issue but I wonder if it’s not an even bigger issue in LGBT community among gay men particularly as well as with some gay women. There is this notion that femininity somehow weakens JUNE 2014 • A&U
a person.” Serano’s Whipping Girl (Seal Press 2007) begins with a great quote by the late Caribbean-American poet and feminist Audre Lorde. “If I didn’t define myself for myself, I would be crunched into other people’s fantasies for me and eaten alive.” Aimed at deconstructing misconceptions about trans women and “transgressing binary gender norms,” Serano sets out “to highlight the ways in which people who are feminine, whether they
discourse. She possesses conviction and speaks her mind. Her strength as a powerful advocate is doubled by her ability to win over the hearts and minds of others easily through undeniably compelling addresses. She is committed to destigmatizing HIV, ending trans oppression, and confronting society’s fear of the feminine. She has been taking her empowering message of living more authentically to colleges and universities across the country and has already committed to an aggressive fall lineup later this year.
be female, male, and/or transgender, are almost universally demeaned compared with their masculine counterparts. This scapegoating of those who express femininity can be seen not only in the male-centered mainstream, but in the queer community, where ‘effeminate’ gay men have been accused of holding back the gay rights movement, and where femme dykes have been accused of being the Uncle Toms of the lesbian movement.” “I think we all internalize this breakdown in our value system that breeds homophobia, and transphobia.” Laverne reflects, “I often think about the question—is there ‘femme’ phobia within our LGBT community, a phobia of the feminine I wonder?” Laverne Cox is steady when it comes to riding this third wave of feminist
On spoiler lockdown and poised for Orange’s Season Two premiere on June 6 along with its likely, round-two barrage of critical acclaim, Laverne in closing reminds us not to worry about her character Sophia, that she is taller than the other women and the only hairstylist in the joint. “At the end of the day if someone has a problem with me, they can’t linger in that too long, or it is going to be to their detriment!” Unlike Sophia, though, Laverne would never hold a bad haircut over any of us. She has got our backs no matter what— and the AIDS community has got hers, as well. Sean Black is an Editor at Large for A&U. He interviewed Phill Wilson of the Black AIDS Institute for the February cover story.
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Mended Heart Surviving childhood sexual abuse, Dr. Frank Spinelli propelled himself into science in order to comfort his peers in the early days of AIDS. Today, he continues his heartfelt mission and looks for better ways of preventing the spread of HIV rather than just simply treating it. Text & Photos by Sean Black
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was looking forward to meeting Dr. Frank Spinelli. Not only to discuss his clenching memoir, Pee- Shy, but to also get his expert advice on what he feels is still critically lacking in the fight against HIV/AIDS. Serving on the Board of Directors of GMHC, the oldest HIV/AIDS service organization in the world, Frank Spinelli, MD, FACP, is a licensed and board certified internist working at Chelsea Village Medical in New York. He is an Associate Clinical Professor at New York Medical College and a fellow of the American College of Physicians. He is the author of The Advocate Guide to Gay Men’s Health and Wellness and is a contributor to The Huffington Post and The Advocate. He appears monthly on Sirius Radio’s Morning Jolt and has co-hosted Speak Out: Real Talk about AIDS. In 2012, he was featured in two documentaries, Positive Youth and the Emmy-nominated, 30 Years from Here. He has appeared on ABC News, NBC Nightly News, MTV, and Sesame Street and has hosted Dueling Doctors on Veria Living TV. When you look at Frank Spinelli, you assume he’s got it all—and today he just might. To his credit, he’s worked hard and he’s earned it. He has a successful Manhattan-based medical practice and a handsome husband Chad (who’s a doctor, too—not fair!). Together they have a well-appointed home, a loyal canine Hoffman, brains, and, of course, good looks. It’s his inner attractiveness, however, that gave him the strength to face his not-so-pretty past. In his memoir, PeeShy, he talks about confronting the man who sexually abused him as a boy and how he brought him to justice. Frank Spinelli is a survivor. “In 2008, while on a tour for my first book, The Advocate Guide to Gay Men’s Health and Wellness,” explains Spinelli, “I had a very vivid dream about when
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I was eleven and was molested by my Scoutmaster, Bill Fox. I Googled him and discovered that, in 1982, just two years after I had told my parents that I was being molested, he talked a suicidal teenage boy off a ledge, adopted him, and then wrote a book called The Cop and the Kid. He was then made Father of the Year of 1983. I tracked him down. He told me he had adopted fifteen boys over the past twenty-five years and he still had three of them living with him and that they had various mental disabilities. I then proceeded to have [probably what could be described as] a nervous breakdown. I notified the police and a therapist and that began a three-year journey to bring him to justice.” Giving us a synopsis he enlightens us. “Pee-Shy is my story about an Italian-Catholic family living in Staten Island, whose child undergoes a traumatizing event, and how that family reacts. I truly believe that the developmental years, the years you spend as a child, are probably more informative to you as an adult than all of your educational years combined. I do believe that children, who have been abused are more likely (and it’s been proven) to engage in unsafe sex, use drugs, use alcohol, become pregnant as teenagers, so all of these things factored
into why I felt the need to revisit my past and do what I thought should have been done thirty years earlier.” Sean Black: How might your book help people who are living with HIV? I think you just briefly touched on how there seems to be a higher incidence rate of riskier behaviors among people suffering from traumas such as yours. Frank Spinelli: A portion of my proceeds from the book goes to GMHC. Many people have asked me, “Why GMHC? They’re an AIDS service organization.” I’ve been an HIV provider my whole career and I am glad to be on their board of directors, but, if you really understand what happens to children and how trauma affects risk-taking behaviors, then you begin to understand. As a result of my research and all the years that I’ve been trying to deal with [the abuse], talking to other survivors like myself, the parallels are just astounding—the risk-taking behaviors, the alcohol, the drugs, HIV infections, especially among gay men. That makes a lot of sense. How should we A&U • JUNE 2014
MAY 2014 • A&U
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address the abuse of individuals during these formative years? I think we still focus too much on the perpetrator. It’s very exciting for the media to vilify people who have been accused of child molestation like Jerry Sandusky, Kevin Clash, and Roman Polanski. We can make them into villains, and they intrigue us. So we focus more on these perpetrators than we do on the victims. Look at me as the example. It wasn’t until I was in my forties that I started dealing with this. And the first thing that everyone asked me is, “Why didn’t you come forward sooner?” Well, I did; I told
my parents in 1980 and my parents were convinced [by others] to do something different. What was I, a child supposed to do? Take matters into my own hands? I think we’re missing the point that children, more likely, will not come forward.
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Most cases of child abuse go underreported and occur by someone the parents or child knows. It’s very hard for a child to come to grips with what has happened because they feel so much shame and guilt. Sure. Do you think the trauma in your life helped propel you towards becoming a caregiver? I definitely think being traumatized as a child propels you to want to do good, at least it was in my case. I’ve always wanted to help people. I found science fascinating. I think when I really came to grips with the fact that I was gay was when I was working in a hospital and the AIDS epidemic was still an in-patient disease. During my training we [still] had AIDS wards. I think it was a huge watershed moment for me—to see the community that I was a part of dying around me— that made me want to help. How about as an activist? I think the activism part for me comes specifically from being abused as a child as well. Because I see so many of the clients at GMHC, who are [previously] underserved, underprivileged, underinsured or not insured, and they need help. That’s why I feel so strongly about working with GMHC. It’s also because there’s a part of me that gets it; I get what they’re going through. I’m very fortunate; I became a doctor, I got to go to school and I had a lot of things afforded
to me that most children who have been molested don’t. And I’ve spoken to many of those people who have lost their ways because of the abuse and now they’re struggling. So I feel very fortunate and that’s part of the reason why I wanted to tell my story. In your OraQuick PSA, you mentioned re-engaging the gay community in order for them to realize the “big deal” of HIV. How can the gay community band together? I think for the most part we still have to talk about HIV. I think it’s important for all gay men to remember that there was a period in our lives where we were dying and HIV disproportionately affected us as a community. I think we still need movies like How to Survive a Plague and The Normal Heart to remind us, and those born after us, of what it was like. That’s our history. That’s our culture. And it’s important for us to keep that message alive...[and it needs to be] updated in order for us to engage the younger generation of gay men and women. How can we update the messaging? We have to ask: where do they go for information? When I was young we didn’t have the Internet! We didn’t have Google. So I read all of my material in magazines. I don’t think younger gay men and women in their twenties read magazines and journal articles. They read everything on-line. So what’s the messaging outlet we’re looking for? Also, I think social media plays a huge part. More than likely people are engaging on Facebook, or even Grindr. I think it’s important to have messaging in those areas. I think it’s our job to go and find them and really speak to them. Teach them how to interpret the information. I also do a morning radio show where I answer questions. We ask young men and women about topics they are interested in. It’s really amazing to me that we have PrEP and yet patients are still like, What is this I heard about PrEP? And I’m thinking, wow, it’s still not out there. So I wonder what the disconnect is between doctors and marketers of healthcare information that we’re not reaching this community? How can we integrate messaging about HIV prevention and safer sex into apps like Grindr? I’ll be honest with you. I’m not on Grindr. I don’t think my husband would really like that very much. I’ve seen it. Patients and friends have shown it to me. A&U • JUNE 2014
“...when GMHC started it was Larry Kramer and a group of his friends talking in his living room about what they could do about the AIDS epidemic. Why aren’t we doing that now about HIV prevention?”
I get it, you know, I was single once and on social sites. I had a profile. There are banner ads with links that we can utilize. There are many ways to get messages out. It may not be a message everyone likes to read or even understand, but I think we should just focus on getting targeted messages out there and educating people with the appropriate information. All too often I’ll be on Facebook and someone will post something to the effect, “AIDS Cure on the Horizon,” and you have all these people who are clicking on it and then it’s some bullshit somewhere. I think to myself, ‘Okay, so that got a lot of people’s attention.’ I wonder how we can utilize that kind of tactic and get people to talk about what HIV prevention really is. How about condom usage? I get it; condoms are a pain. People are sick of using condoms. People want to talk about possibly using PrEP instead of condoms. My real objective in the next year is working very closely with GMHC and Dr. Demetre Daskalakis, who is on GMHC’s Board as well. He does a lot of work in sex clubs and bathhouses to test and talk about HIV prevention. I really JUNE 2014 • A&U
would like to see GMHC do a forum on HIV prevention without an agenda and invite clients, activists, doctors and officials from the Department of Health to come have an open discussion. I would really like to see us engage as a community because when you think about how GMHC started it was Larry Kramer and a group of his friends talking in his living room about what they could do about the AIDS epidemic. Why aren’t we doing that now about HIV prevention? You’re a great interview, by the way. I talk too much. No, I think the topics you bring up are important and talking about them might help motivate us further to re-engage the younger gay community. I’m in my forties as well. So we’re close in age. You remember the tail end of what it was like and I’m sure you know someone who has died but I can tell you that when I started treating twenty-year-olds they have no clue. They’ve never even heard of Longtime Companion, Angels in America, and And the Band Played On. It’s just startling to me because those were movies that
haunted me. I remember going to see Angels in America on Broadway when I had just turned twenty. I was leaving [the theater] with a girlfriend and remember saying to her, “Wow, I’m probably going to get AIDS.” That was what I thought. That this is probably going to happen to me. I don’t think we realize how much of an impact the AIDS epidemic had [on us] because of all of those people we lost. We lost so many. It’s very few and far between where you see AIDS activists getting up and talking where a twenty-year-old can completely identify. I really, really admire those younger people who come out and say I’m HIV-positive. I think RuPaul’s Drag Race has been amazing—you see these queens also sharing their stories about HIV. Even Project Runway; to see that, with them looking great, competing. You think, “Oh, that’s what AIDS is today. It’s about living and being a working, creative person who is contributing to the community. It’s changed a lot. Sean Black interviewed Allen Sowelle and Josh Feinman of Front Seat Chronicles for the May issue.
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Know the Score Uniting a Love of Soccer and HIV Education, Africa Goal Explains Why “Zero” Is the Score It Is Shooting For
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hey call it “the beautiful game” because of its simplicity. According to FIFA World Cup commentator and writer Jamie Trecker, soccer (or, football, as it is known everywhere but the U.S.) has clear rules of play. It’s easy to follow, too. Individual players shine, but always as part of a collaborative effort. You can always play it anywhere, with most anything. Africa Goal knows another simple reason why soccer can be considered “the beautiful game.” It brings people together as fans, and, during the World Cup matches, communal excitement is at an all-time high. The organizers of Africa Goal realized that the World Cup playoffs was the perfect time to reach communities hard-hit by AIDS with HIV prevention and treatment awareness, as well as on-site testing and counseling. Activities also seek to empower individuals in marginalized groups and extend the impact of local service organizations. Traveling across various communities in African nations wracked by the highest HIV prevalancy rates in the world, the mem-
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bers of the all-volunteer Africa Goal team sets up live-feed, jumbo-sized projection screenings for communities to enjoy the matches and joins in any other soccer-related fun. In coordination with local partners who are expert in HIV services, the team engages community members about HIV with culturally tailored and age-appropriate materials. In particular, the team and partnering organization strive to bend the ears of youth, men, sex workers, truck drivers, marginalized groups, and those engaged in transactional sex, who have traditionally been more difficult to reach through conventional health-promotion means. Africa Goal is comprised of a ten-member soccer-loving team of dedicated experts in the fields of HIV services, health, community partnering, technology, and travel, among others. It is extremely grateful for its sponsors and help from organizations like SAfAIDS, which develops HIV information for distribution during the project. Africa Goal has completed two HIV prevention awareness road trips so far, in 2006 and 2010, the last World Cup Years. Now, in 2014, they are setting out again, traveling a route through Kenya, Uganda, Tanzania, Malawi, Zambia, Zimbabwe, Mozambique, and Swaziland. New this year are stop-offs in rural fishing villages in Western Kenya and Uganda, which comprise some of the areas hardest-hit by AIDS in East Africa. The route has been called the “AIDS highway,” a multinational corridor where a booming transport-and-trade economy and increased HIV risk intermix. According to a 2012 UNAIDS report, East and Southern Africa comprise only five percent of the world’s population, yet these regions account for half of the world’s population living with HIV, forty-eight percent of the world’s
new HIV infections among those ages fifteen to forty-nine, and forty-eight percent of all AIDS-related deaths. “2010 was a great success and was really well received by community members and partners alike,” notes Kenyan Mary Leakey, Africa Goal project coordinator, about why 2014’s trip will not change much in terms of the concept or implementation. “We are working with many of the same partners this time so, having implemented the events a couple of times with them, we have a pretty good mutual sense of what we all want to achieve through the events—we achieved that last time and hope to do so again this time.” Some of the information has changed to reflect new WHO treatment guidelines that have been adopted, and this will, in turn, change the focus of some of the events, says Leakey, who works as a grants officer for Mildmay Uganda, an HIV materials author for SAfAIDS, as well as a development consultant for a number of other NGOs. “For example, as part of a big push to eliminate pediatric transmission of HIV, all pregnant women living with HIV are now eligible for ART for life so there will be a bigger focus on prevention of mother-to-child transmission (PMTCT) and couple’s testing in many of our event locations, along with the other key prevention and treatment information.” Emboldened by the successes of 2010, when some of the partners introduced onsite HIV counseling and testing in response A&U • JUNE 2014
photos courtesy Africa Goal
by Chael Needle
people remember the previous events so that definitely helps with bringing together more people each time,” shares Leakey. “People always ask us to come back the next World Cup and we always say we will try—but four years is a long time to pass so it’s great to see people genuinely excited that we have actually come back!”
to increased access to HIV treatment, Africa Goal is encouraging all of its partners to offer testing and counseling during this campaign. Access to personal technology in the form of smart phones has increased, too, so the organizers created the Africa Goal 2014 mobile app, which provides another World Cup-centered way to disseminate information. “We were thrilled to reach almost 25,000 people during 2010 in one month— but, of course, this year we would like to reach even more! As we revisit places, many
Chael Needle: In 2010, the World Cup took place in South Africa, the first time on African soil. Do you expect soccer fever to be diminished now that it is taking place in Brazil? Mary Leakey: 2010 was definitely an incredibly exciting year for Africa—not least because it was embraced as a show of faith in Africa, a continent which is too often better known for bad news stories. There was certainly a very palpable feeling of hope, excitement and opportunity across Africa and, of course, the hype around soccer was at an all-time high! Having said that, much of the “extra” excitement was about what hosting the World Cup signified. Even though the World Cup will not be hosted in Africa this year, we are
not at all concerned that soccer fever will have diminished. The love, excitement and passion around watching and playing “the beautiful game”—and following the World Cup—remains as strong as ever. A common love of soccer and a celebratory mood makes for a good opportunity to talk about a proactive approach to health, but how exactly do you juggle the two? Do the partnering organizations help prepare the residents before you arrive? Yes, we work very closely with our partner organizations to plan the events in advance—we are covering long distances, often on roads in poor condition, so it is not uncommon for us to arrive at the event locations with just enough time to set up and start the events. Our partners are fantastic— the project would not be possible without their collaboration and help with coordination. They see the potential of the events as a great way to reach out to the communities where they are working in a new and exciting way—their support and endorsement of the project is truly gratifying. Our partners promote the events ahead of our arrival—both the World Cup match screenings and the activities. They also often arrange football tournaments to coincide with the events which also helps with promotion. People who have heard that the World Cup is coming—live and on a big screen—to their community see the cars arrive, get excited and start forming a crowd. Others, seeing the crowd forming, figure something interesting must be happening and join in…we regularly have audiences of several thousand people at the events! The fact that our audience members are united both by a common love of football and by all having been touched, in some way, by the HIV epidemic (HIV prevalence is as high as thirty percent or more—which is almost one in three people living with HIV—in many of the communities in which we work) is a powerful introduction to the events and reason for marrying the two goals of the events: to celebrate a love of football together and to recognize the role that each and every one of us has to play in the HIV response. Living with HIV/AIDS and even talking about HIV/AIDS are often highly stigmatized. In 2010, to what extent did you face resistance or reluctance along the route? HIV-related stigma and discrimination is certainly a major obstacle to addressing HIV and a key challenge contributing to community members’ fear of attending health centers and clinics for HIV informacontinued on page 53
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THE BENEFIT OF Scott McPherson and Chris Richey Became Fast Pals, and Then Evolved That Relationship Into Empowering Others with The Stigma Project by Dann Dulin
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hey clicked. When Chris Richey and Scott McPherson met in Los Angeles, they discovered that they were both passionate about the same issues. One issue was HIV/AIDS stigma. They dreamed of an organization to counter such prejudice, but were told that they were too young to be taken seriously. This compelled them to prove their detractors wrong—and they did! In 2012, they began The Stigma Project (TSP). Its undertaking is to globally eliminate HIV/AIDS stigma through social media, advertising, and pop culture. For Chris, the mission was very personal. Diagnosed with HIV in 2010, he encountered what he calls “pozphobia.” He was rejected by new boyfriends, turned away from two Los Angeles dentists, and suffered the dehumanizing experience of being used by an AIDS organization as an example of the consequences of reckless behavior. Scott, former creative art director of two magazines dedicated to LGBT coverage and HIV/ AIDS, respectively, was not only disturbed over the countless acts of discrimination directed at those with HIV, but he personally witnessed the venom directed at Chris. Says Scott: “Eventually when Chris disclosed to me, it wasn’t such a scary thing to me anymore and I knew he needed support. Yet I’d witness our friends say rude and completely untrue things around Chris that I felt like I needed to scream the truth just to
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get their attention. I guess, in a way, that’s what we’re doing now.” At the end of April, TSP had their first fundraiser, which pulled in $20K. Their first official program, the TSP Library will become available this summer. It will contain a database of visual assets including all of TSP’s ads, cheat sheets, and infographics in various sizes and resolutions. Their inspiration and their organization’s heroes activist Peter Staley and the men and women of ACT UP. “They paved the way and continue to play a pivotal role in the fight to end the epidemic,” says Chris. And, Scott adds: “I think anyone who has the courage to be completely open about his or her status is a hero. They are doing something very powerful in ending stigma: they’re educating by living openly. They are the knights in shining armor.” Scott, twenty-eight, and Chris, twenty-nine, are both single (Scott: “Thank you for assuming we’re not a couple.” Chris: “Ain’t nobody got time for that!”).
Chris hails from a conservative Texas town, while Scott was raised in Miami. Each of the two entrepreneurs considers his mother as a role model, and both guys are loving pet owners. “Butler” is Scott’s cat, and Chris’s dog is “Boss.” Dann Dulin: Say something about your pets. Scott McPherson: Butler has the personality of a dog and greets me at the door every evening. Chris Richey: Boss is a boxer and he’s… the boss! When did you first hear about the epidemic? Chris: I was in church. I was about eight years-old. A man was telling a group of high school kids that AIDS was God’s cure to homosexuality. I just remember thinking, “God is good. Why would he make someone so sick?” That still shapes my perception of the disease. Scott: Growing up in Miami and being born only a year after the discovery of HIV, I’ve always been aware of it. Were you taught HIV-prevention in high school? Scott: I took a few health classes where we discussed sexually transmitted diseases for about two days and HIV/ AIDS was lumped into that mix. All they said was that it’s deadly, and the best way to prevent it is not to have sex. Chris: Being raised in East Texas, it was your PE teacher or your football coach who taught sex education. We were told, “Don’t have sex, and you won’t A&U • JUNE 2014
F FRIENDS get pregnant and you won’t get STDs.” Abstaining from sex until marriage was the only option.
steady at 1,800 and I have an undetectable viral load.
Have you lost any friends to this disease? Chris: I lost a friend to AIDS in 2010, the year I was diagnosed. His death came as a huge shock to his family and to all of his close friends. He was unaware that he had been positive for at least eight years. He died of pneumonia at the age of thirty-one. I was devastated. Scott: I have not lost any close friends to AIDS, but I remember being told the story of my gay uncle, who died mysteriously in 1985, just before I was born.
What’s your advice to a newly diagnosed person? Chris: First and foremost, remember that you are not alone. There are resources to help you and people you can talk to. Don’t keep all your feelings bottled up. Please talk to someone. Secondly, see a healthcare provider and make sure you find one that you trust. Your relationship with your provider is crucial to the journey forward. Lastly, go get some ice cream and take a day to think—never stop enjoying life. You’ve got a long one ahead—make time for the fun stuff.
bottom photo by Bradford Rogne; top photo by Connie Kurtew
Chris, would you like to share how you were infected? Chris: In 2009, two things occurred: I graduated from college and the stock market crashed. After spending about six months looking for work, despite so many promising leads prior to the economic crisis, I went through a spiral of depression. This eventually led to my crystal meth habit. For six months or more, crystal meth, GHB, bathhouses, and anonymous sex was my life. Finally, I snapped out of it. Sometime during that period I contracted HIV. But why harp on the past? How’s your health today? Chris: My health is excellent. It’s never been better. My T-cell count remains
Establishing an organization is not an easy task. What motivated you? Scott: The motivation came after I saw the way Chris and I worked together, what we were able to produce so quickly, and the influx of support and positive feedback we Scott McPherson and Chris Richey
received. That’s when I knew that together we had an opportunity to make a difference. As the organization grows, so does my motivation. Chris: It came after the internal stigma I felt in that first year after my diagnosis. It made me sad to know that a community so affected by HIV in the eighties and nineties could be so out of touch with the epidemic. I was more motivated by talking about HIV to my friends and subsequently they were better informed, much like the idea behind Harvey Milk’s advice, I’m paraphrasing: “Come out, come out, wherever you are. By knowing us, people make a personal connection and they learn more, and are more likely to care.” Scott: As a sexually active gay male, it’s my responsibility to care. I take PrEP [pre-exposure prophylaxis, a prevention method] every day. Also I have some close friends who are HIV-positive and I’ve met so many amazing and inspiring new people through this organization. This community has welcomed me with open arms and it’s a part of who I am now. I don’t go a day without saying those three letters [H-I-V] a dozen times. What can a concerned citizen do to help with The Stigma Project?
continued on page 54
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New Guidelines revised treatment strategies address cost, monitoring & choosing a regimen
Cost Considerations & Antiretroviral Therapy This new section breaks from tradition by adding an overview of antiretroviral therapy-related costs to the guidelines. Discussing costs in the context of adherence, the new section covers cost-sharing, prior authorizations, and the use of generic drugs. The new section also makes special note of strategies that may contain costs, without threatening treatment efficacy. Laboratory monitoring. As research suggests that continued CD4 monitoring does not change positive health outcomes for patients with viral suppression and CD4 counts exceeding 200 cells/mm3 after 48 weeks of therapy, the panel recommends that patients with long-term virologic suppression on ART be switched from biannual to annual monitoring. Generic formulations. Though the panel recognizes the potential of increased pill burden and reduced adherence with the use of generics, it provides comprehensive tables that show average monthly wholesale generic drug prices to be lower than brand-name prices, and thus a potential cost-saving strategy. Navigating payment. The panel recommends that healthcare providers stay up-todate about current insurance and payment structures, ART costs, discounts among preferred pharmacies, and available generic options, as well as work with patients (and their case managers and social
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workers) to become aware of the particulars of their pharmacy benefit plans and any potential financial barriers to filling their prescriptions. Familiarization with other cost-saving options, such as ADAP and pharmaceutical company patient assistance programs, is also recommended. Frequency of CD4 Count Monitoring The panel recommends a decrease in CD4 count monitoring, while maintaining the importance of viral load as a marker of treatment success. The panel reaffirms the importance of frequent CD4 count monitoring when a patient first enters care to determine the need for initializing antiretrovirals and prophylaxis against any opportunistic infections; or when a patient experiences viral rebound, develops new HIV-associated clinical symptoms, or develops conditions or starts therapy that may lead to a depletion of CD4 cells. Monitoring is also helpful in patients with advanced HIV infection to indicate when OI prophylaxis or treatment might be discontinued. However, frequent CD4 count monitoring is generally not needed for patient management, especially in patients with higher counts and consistently suppressed viral loads, as previously noted. “Preferred Regimens” vs. “Recommended Regimens” for Initial Treatment As options for initial therapy for treatment-naive patients have expanded since 2009, the panel has changed “preferred”—which singled out four regimens—to “recommended,” which accounts for new agents and co-formulated products that have proven to be efficacious in long-term follow-up studies and clinical practice. Recognized for their optimal and durable virologic efficacy, favorable
tolerability and toxicity profiles, and ease of use, these regimens are further classified according to a patient’s baseline viral load and CD4 cell count. The list of alternative regimens has also been revised, with the panel noting that, depending on the individual patient, an alternative may be an optimal therapy. Overall, though, these alternatives are effective and tolerable, but may have possible drawbacks and less supportive research data when compared to those labeled “recommended.” Some drugs have now fallen off the recommended list in light of new, expanded options. Switching ARV Drugs While Virally Suppressed Switching regimens should always maintain viral suppression without closing off future treatment options and be done in accordance with a patient’s prior treatment history and responses to ART, resistance profiles, and drug tolerance, the panel recommends. The report also provides data from clinical trials that have studied switching from traditional to alternative regimens, and a new table outlines recommendations for switching because of adverse effects from drugs. To read the report on revised guidelines, log on to: http://aidsinfo.nih.gov/guidelines. Chael Needle wrote about mood fluctuations in relation to protective practices among HIV-positive MSM in last month’s Wellness Watch. A&U • JUNE 2014
illustration by Timothy J. Haines
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evised guidelines for HIV treatment approaches will help you and your physician figure out how to fine-tune your regimen, now or when you might need to do so in the future. Reported in Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents, which was developed by a panel of experts under the direction of the U.S. Department of Health and Human Services and its Office of AIDS Research, the information seeks to incorporate new insights about antiretroviral treatment for HIV based on the latest research and update the shifts in gold-standard HIV care practice. The following sections reflect the major new revisions and updates in the guidelines:
Acupuncture helps me manage my pain and tunes me up.
Miguel, D.A.P. client
D.A.P. treats and supports the whole person Those little needles give me such relief, the way they reduce stress and anxiety, not to mention pain. I believe they activate my body’s electrical grid in a way that helps keep my viral load suppressed. It may not be for everyone but acupuncture has worked for me for 25 years. I’m grateful D.A.P. offers it as a complement to the primary and HIV-specialty care I get at their clinic.
This and more...all under one roof Thanks to your generous support, Desert AIDS Project has been saving lives for 30 years. Please continue to help by donating at desertAIDSproject.org, joining one of our annual giving programs, or by saving the date for one of our upcoming fundraising events. Queen of the Desert | May 28, 2014 Summer Mixer & Dance Party | July 24, 2014 Desert AIDS Walk | October 18, 2014 Dancing With The Desert Stars | November 15, 2014 World AIDS Day | December 1, 2014
760.323.2118 MAY 2014 • A&U
desertAIDSproject.org 47
lifeguide
Food for Thought
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he hepatitis C virus gets a lot of attention, and rightly so, because it can and does kill. But several high profile outbreak scares from infected restaurant workers has put the less deadly hepatitis A virus (HAV) on the map as a serious public health concern. The hepatitis A virus causes acute liver infection and it’s spread when a person ingests fecal material from an infected person and causes symptoms that include, fever, chills, nausea, dark-colored urine, and jaundice, a yellowing of the skin or eyes. It is a big issue in food service, where servers, cooks and food prep workers with the virus could spread it rapidly through every piece of food they touch. Hepatitis A sickens as many as 17,000 people a year and kills nearly 100 according to 2010 estimates from the Centers for Disease Control and Prevention (CDC). That’s only a fraction of the 48 million people in the U.S. who suffer from food poisoning each year. But unlike E. coli and all other foodborne illnesses, hepatitis A can be prevented with a vaccine. Though vaccinations for hep A are routine now for infants, there is a generational gap. A new CDC report shows that, in 2010, slightly more than ten percent of people between the ages of nineteen and forty-nine got a hepatitis A shot. Those are the ages of people most likely to work in restaurants. For years the CDC said that food handlers didn’t need hepatitis A vaccinations because outbreaks are rare, especially since the introduction of a safe and effective vaccine in 1996. But recent HAV scares are causing some food industry watchers and medical specialists to urge the CDC to make vaccinations compulsory for all food handlers. In April alone nearly 2,000 people received immunoglobulin shots to prevent hep A infections after restaurant workers in New York and South Carolina tested positive for the virus. Last fall nearly 2,000 people in New York City were vaccinated after an infected food handler caused an outbreak of HAV. Many in the medical community argue that mandatory vaccines for food workers would be worth the investment. Critics say it
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would violate the rights of employees to foods with their bare hands went into mandate a vaccine, and would come at a cost to effect. The outcry from restaurant owners, the restaurant. Bill Marler, a food safety lawyer, argues for mandatory vaccination in a recent edition of Food Safety News, saying that hepatitis A continues to be one of the most frequently reported, vaccine-preventable diseases in the U.S: “Vaccinations cost about $50. The major economic reason that these preventive shots have not been used is because of the high turnover rate of food-service employwaiters, chefs and bartenders was immeees. Eating out becomes a whole lot less of a diate. Critics argued that single-use gloves gamble if all food-service workers faced the are not environmentally friendly, that they same requirement.” can interfere with food preparation and The cost of vaccinating workers is that they won’t necessarily limit cross-condisputed, however. The restaurant industry tamination. Microorganisms may still be says the cost of universal hepatitis A vactransmitted through gloves if food workers cinations to the companies could be up to don’t wash their hands before putting on $200 per worker. the gloves. And cooks wearing gloves still Until the CDC calls for mandatory have to watch out for cross-contamination vaccinations, it will be up to states and if they’re working with both uncooked and local communities to make their own regcooked foods—that’s a big issue in transulations. Some are going ahead with manmitting the more common foodborne bugs. datory vaccination laws. After St. Louis The “no bare hands” regulation has been County, Missouri, faced three large hepso unpopular that the California state legislaatitis A outbreaks tied to food handlers ture is in the process of repealing it and telling in the 1990s, county officials required all restaurants to go back to the previous “minimal restaurant workers to be vaccinated. Since food contact” law and requiring thorough hand then, the number of cases dropped from washing after every rest room break. As always, 110 a year to near zero. those guidelines are impossible to enforce. An alternative regulation to mandatory vaccinations for restaurant workers, Larry Buhl is a radio news reporter, screenwriter, mandatory glove-wearing, is being tried. In and novelist living in Los Angeles. His young Creator, writer, and Sowelle January, a new California law prohibiting adult novel, Thedirector Genius ofAllen Little Things, debuted food workers from handling ready-to-eat last year. A&U • JUNE 2014
illustration by Timothy J. Haines
hepatitis a prevention efforts spark controversy
THERE’S POWER IN OUR PRIDE
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Political and Social Inclusivity and Equality
Funding Community Events and Charities
LGBT studies have opened doors (and minds) in leading corporations and organizations, which in turn have recognized the value of their LGBT employees through the establishment of equal hiring policies and domestic partner benefits. This has been a catalyst, leading to sweeping changes in political and social inclusivity.
Beyond simply advertising, though, these companies support us in many ways, including sponsoring community events and funding community-based charities in order to earn our loyalty.
Keep LGBT Publications and Websites in Business Demographic reports also influence marketing investment. Virtually absent until recently, we now see a growing variety of products and services represented in LGBT media, celebrating our diversity. Ads keep LGBT publications and websites in business, serving their communities with independent news and information.
Taking an annual pulse on market trends through surveys helps demonstrate the LGBT community’s growing power, and influences positive change. Everyone who completes the survey by June 30, 2014 may enter into a drawing to win one of five US $100 cash prizes, or designate a non-profit charity to receive the prize. CMI Community Marketing & Insights Community Marketing, Inc.
Community Marketing, Inc. is an NGLCC Certified LGBT-Owned Business Enterprise. Founded in 1992. LGBT Community Survey is a trademark of Community Marketing, Inc. 584 Castro St. #834 San Francisco CA 94114 USA
E R U T CUL S THE
AID OF
1VOICE/1PLAY/1DAY
Project1VOICE Honors Women with a Staged Reading of For Colored Girls by Chael Needle
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roject1VOICE, a national organization that seeks to strengthen and promote African-American theater arts, is returning once again with its fourth-annual 1VOICE/1PLAY/ 1DAY, an event when, as its title implies, a diverse array of theaters and institutions will be projecting in one voice, with staged readings of the same play on the same day. Last year, the non-profit’s signature event offered Four Little Girls: Birmingham 1963, a play by Christina M. Ham about the white-supremacist Baptist church bombing that killed the titular characters, and this year, on June 16, another seminal American play will resonate across international staged readings: Ntozake Shange’s For Colored Girls Who Have Considered Suicide/When the Rainbow is Enuf. Project1VOICE has partnered with the National Black Leadership Commission on AIDS (NBLCA) for a flagship production of the play at Harlem Hospital’s Mural Pavilion in New York City. Along with a staged reading with Tony-winning actresses Trazana Beverley, LaChanze, Adriane Lenox, Tonya Pinkins, and Lillias White, among others, under the direction of Seret Scott, the fundraising event will also offer a panel discussion moderated by author, journalist, and blogger Demetria Lucas and featuring author Terrie Williams (Black Pain: It Just Looks Like We’re Not Hurting), author and HIV activist Dawn
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Breedon, and HIV and health advocate Dr. Aletha Maybank. Playwright Ntozake Shange, who will also attend the event and be on-hand for a VIP reception, updated her play for its twentieth-anniversary productions, in 1994, to include HIV. Now celebrating its fortieth anniversary, The Tony and Obie-winning For Colored Girls uses poetry, dance, and music to bring to life seven characters, all women, all African-American. The characters, all named after a color, explore all the complex and intertwining ways of what it means to live as a woman. The play traces the obstacles but also the paths to empowerment. “What Shange talks about is always relevant: the pain of relationships; the desire to be loved; the value of female friendships; feeling alienated in the world and trying to find ways to be more selfaware,” notes actor/producer Erich McMillan-McCall, the founder of Project1VOICE, about how the play fits in with this year’s event theme—what it means to be female in the twenty-first century, with a focus on empowering women and girls. “It uses the voices of Black women, but it’s a universal story, a human story.” It’s a story that preserves history, social locations, and specificity, even as it takes on new meaning in new productions. “We’re living in a world where people still do not want women to be empowered,” reminds McMillan-McCall, referring to
the recent kidnapping of more than 200 Nigerian girls by those who do not want to see young women educated. C. Virginia Fields, CEO and President of the National Black Leadership Commission on AIDS, agrees with him about the play’s contemporary relevance. “It still
speaks today to challenging issues facing Black women that don’t get talked about and don’t get recognized in a way that we experience them.” Notes Mrs. Fields: “HIV/AIDS is something that is still not talked about among the general population, and especially among Black women, to the extent that it should be, considering its impact. Black women have the highest rates of HIV/ AIDS among all women. Over fifty percent of all new HIV/AIDS cases are among Black heterosexual women, so to have those messages is powerful in a production like this.” Mrs. Fields is excited that the panel of experts will be on hand to help facilitate a discussion and that the event will include a health fair component. From 3 to 7 p.m., a health fair will offer free and confidential HIV testing and hepatitis C testing, as well as information about an array of issues, including dental care, eye care, and domestic violence, among others. The holistic approach to engaging communities is very much aligned with the aims of NBLCA, which engages African-American leaders and community stakeholders across the country to fight AIDS by addressing poverty, racism, homophobia, stigma and discrimcontinued on page 54 A&U • JUNE 2014
Imagine a world without AIDS JOIN US THIS JUNE FOR THE 20TH ANNIVERSARY OF AIDS EDUCATION MONTH! Since 1993, Philadelphia FIGHT has hosted AIDS Education Month (AEM), a series of FREE events throughout Philadelphia to increase awareness of AIDS and to bring people together to find strategies to combat the virus.
PHILADELPHIA, PA
Our goal is to end the AIDS epidemic within the lifetime of those currently living with HIV.
JUNE 2014 CALENDAR OF EVENTS TUES., JUNE 3 ALL EVENTS ARE FREE: Register online at www.aidseducationmonth.org or call 215.985.4448 x 200
SAT., JUNE 7
Faith Leaders & Community Summit
Opening Reception & Awards Ceremony
5:30 - 7:30 p.m. Independence Visitors Center 6th & Market Streets The official AEM 2014 Kickoff! Renowned French virologist Françoise Barré-Sinoussi, will be honored with the Kiyoshi Kuromiya Award.
TUES., JUNE 10
Prison Health Care & Reentry Summit
THUR., JUNE 5
Step Up Against AIDS
HIV testing: 5 p.m. Doors open: 6 p.m. • Show: 7 p.m. Temple University Performing Arts Center 1837 N. Broad Street The first Philadelphia FIGHT Stepping Showcase to promote HIV/AIDS awareness and prevention.
SAT., JUNE 14
The Legendary Crystal Ball
Invitation Only • 8 a.m. - 2 p.m. Marriott Downtown Hotel 1201 Market Street
8:30 a.m. - 5 p.m. Pennsylvania Convention Center 12th & Arch Streets
7 p.m. – Midnight University of the Arts, Hamilton Hall 320 S. Broad Street
Local faith leaders convene to learn how to promote HIV prevention, education, and linkage to care within their congregations.
This summit explores health and reentry challenges facing people who are incarcerated or reentering our communities.
Philadelphia FIGHT and COLOURS host the region’s most recognized house/ballroom community event that integrates HIV prevention with electrified talent and artistry.
The Rev. Dr. Jeremiah A. Wright, Jr., Keynote Speaker, former pastor of President Barack Obama is a revered, theological scholar, author and historian.
WED., JUNE 18
Prevention & Outreach Summit
Michelle Alexander, Keynote Speaker, is a highly-acclaimed civil rights advocate, legal scholar and New York Times best-selling author.
TUES., JUNE 24
Movements for Change
8 a.m. - 5 p.m. Pennsylvania Convention Center 13th & Arch Streets
12 - 2:30 p.m. Friends Center 1501 Cherry Street
Find out exciting strategies for preventing HIV and linking those who are positive to life-saving treatment, and learn how the AIDS epidemic intersects with related issues.
A unique event that addresses grassroots activism. This year, the focus is on immigration movements happening both locally and nationally.
OPENING PLENARY SPEAKERS
SAT., JUNE 28
Community Cookout
Farid Esack, a Professor in the Study of Islam at the University of Johannesburg, is an active member of Positive Muslims, an organization working with Muslims in South Africa who are HIV-positive.
11 a.m. - 3 p.m. Fairmount Park, Area #2 33rd Street & Cecil B. Moore Avenue
Paul Kawata, Executive Director of the National Minority AIDS Council, the premier organization dedicated to building leadership in communities of color to address the challenges of HIV/AIDS.
Relax, kick back, and enjoy the community that AEM brings together at our annual cookout.
FRI., JUNE 27
Hip Hop for Philly
Philadelphia FIGHT and CHOP present a FREE HIP HOP concert. Young people who receive an HIV test at one of our participating locations throughout the city get a free ticket.
Go to www.fight.org/hiphop for more information.
SUN., JUNE 29
Gospel Concert
5 - 8 p.m. Mt. Airy Church of God in Christ 6401 Ogontz Avenue Join us for an inspirational night of gospel music. Together, we will lift our spirits through song.
Philadelphia FIGHT is a comprehensive AIDS service organization providing state-of-the art, culturally competent primary care to low income members of the community, HIV specialty care, consumer education, advocacy, social services, and outreach to people living with HIV and those who are at high risk, including family members, communities with high rates of HIV, formerly incarcerated
FEBRUARY 2014 • A&U
persons, and young people at risk, along with access to the most advanced clinical research in HIV treatment and prevention.
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adies and gentlemen, prepare to be dazzled...On Sunday, June 22, The Penn & Teller Theater at Rio All-Suite Hotel & Casino in Las Vegas will be as packed as a clown car when the 28th annual Ribbon of Life, presented by Golden Rainbow, long a tent pole of AIDS awareness and fundraising, will treat attendees to an “Under the Big Top” spectacular. Thanks to a star-studded cast of famous performers from the Las Vegas Strip and beyond, the event will offer circus-inspired acts hosted by “ringmasters,” and emceed by TV personality Chris Saldaña and Edie of Cirque Du Soleil’s Zumanity. Ribbon of Life, one of the largest HIV/ AIDS fundraisers in the Silver State, is the main source of revenue for Golden Rainbow, a non-profit organization that provides housing and direct financial assistance to men, women Last year, two-time Grammy-winning singer Jon Secada [A&U, December 2000], and children living with HIV/AIDS across NBC’s America’s Got Talent star Michael Grimm, and top Las Vegas entertainers Southern Nevada communities. Founded by including Clint Holmes, Josh Strickland, Frankie Moreno, Human Nature, and members of the entertainment industry in 1987, many more helped raise more than $152,000. Golden Rainbow also offers a “Back to School” program, providing children living with HIV/ AIDS with school essentials, as well as educational programs. Date: June 22; time: 1 p.m.; location: Rio All-Suite Hotel & Casino, The Penn & Teller Theater, 3700 W. Flamingo Road, Las Vegas, Nevada; tickets: starting at $50. For more information, visit www.goldenrainbow.org or contact the organization by phone at (702) 384-2899.
RUBY’S RAP continued from page 19
those men are my patients.” That was the impetus for me. I had to do something, so I started doing AIDS benefits. Thank you—from the heart—for all your efforts, Irene…. Oh, Ruby, when I saw those beautiful men on that beach, I knew I had to effect a change. These boys had been my advocates, supporters, encouraging me to shine in all of my unique, quirky glory. They told me I was fabulous—from being a funny, chubby girl to showing the world I was like no one else! The more outrageous I was, the more they applauded. I had to help my boys…they gave me my life, and now they were losing theirs. Oy vey ist mir. You’ve known a lot of people….Which individual has inspired you the most? I meet people who inspire me in all my interactions. I’m lucky to still have hundreds of friends whom I’ve known for twenty-plus years. I’ve been most inspired
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by my beloved girlfriend Cindy. She taught me about love—about unconditional love. I’ve always been with men, so this was a new situation for me. She knew it when she saw me twelve years ago singing in Palm Springs. She’s…a…revelation, and we had a daughter, who is now five years old. Ella is an incredible being, a beautiful prodigy, whose light will shine to the world. She helped me heal…. Heal? Five years ago I would get sick if I only had one drink. My life [living] in Portland and Hawaii was a time that we drank a lot! I wasn’t an addict, but I stressed my body out with alcohol. I was working like crazy, driving back and forth to gigs every week for fifteen years. I pushed myself too hard and never gave my body a chance to rest and heal. It got to the point where I was taken to Cedars-Sinai ER. I spent four days in intensive care. Afterwards, a good friend provided a safe haven, their guesthouse, where I spent four months healing and recuperating. I simply stopped drinking alcohol. I also stopped drinking any sodas. Since then I’ve had a run of surgeries that stopped my career. Three years ago I
couldn’t walk, because of complications from surgeries. I’ve managed to stay healthy despite all odds, which is an attribute to my holistic regimen. I consider you a role model, Ms. Irene, or rather, Fairy Godmother. How in the world did you come to coin yourself that moniker? In 1988 I started out professionally as The Fairy Godmother in San Francisco for a big benefit, “Men Behind Bars.” It was an all-volunteer show with a cast of 125 of the best singers, dancers, actors, and musicians. It’s still one of the most spectacular shows ever produced to this day! After twenty-five years I’m still using it and, at times, it became a fitting title for some of my tours. My new tour is called “This Is My Life.” I travel around the country from resorts to hospitals, bars to churches, benefits to fundraisers. The Fairy Godmother brings laughter, music, magic, healing, and inspiration into people’s lives! Who doesn’t need that? Get zapped by The Fairy Godmother by logging on to: www.irenesoderberg.com. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com. A&U • JUNE 2014
Photo by Tom Donoghue
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A Calendar of Events
AFRICA GOAL continued from page 43
tion and services. Creating a non-stigmatizing, non-discriminatory and non-confrontational platform for engagement is one of Africa Goal’s key priorities—and one of the major reasons that our partners embrace
the project so enthusiastically. By approaching HIV as an issue which has, and continues, to affect everyone—and something which we all have a role in addressing—the events create a sense of inclusiveness which helps to overcome potential resistance. We are routinely impressed by peoples’ willingness to participate actively in the events—including choosing to go for onsite HIV counseling and testing. During 2010, one young man in his early twenties came to talk to us after having received the results of his HIV test. He said that it was the first time that he had been for an HIV test: “I have known that I should go for a test for a long time—everyone should know their status—but I have always put it off. Today, my friends and I were talking and we decided that we had more to be scared of if we didn’t know. So we agreed that we would all go—my girlfriend and I both went for testing today.” We also often saw people at the matches engrossed, reading the Africa Goal information materials, developed in partnership with SAfAIDS, which we distributed. The materials were packaged in a drawstring sports bag and included HIV information booklets (which also detailed the World Cup match schedule); posters and stickers. We had different age-appropriate packages for adults and children: the adult bags also contained male and female condoms and JUNE 2014 • A&U
we had comic book style HIV information booklets for children. It was really rewarding—and encouraging—to see groups of people, particularly groups of young men, reading and discussing the materials and the information together. What other highlights from your last campaign stand out in your mind? There were so many events and instances which were definite highlights, but I’ll start with the event we held in Swaziland. When we arrived, we found around 5,000 people had gathered! It was our biggest event of the 2010 project. We partnered with SAfAIDS for the event and they had engaged the Minster of Health who was really excited about the project and turned it into a National event. They brought together several local HIV organizations to conduct information sessions and activities, including on-site HIV counseling and testing and organized a football tournament between local youth leagues. Swaziland has the highest HIV prevalence in the World so it was great to see so many people coming together to use the opportunity that the World Cup presented to tackle key HIV issues—and it was amazing to see that so many people had gathered for the event (despite it being really cold that day!). Another highlight was the event we held in Salima, in Malawi. We worked with the Salima HIV/AIDS Support Organization (SASO), which is a small HIV organization based in this very rural village in Malawi. We followed SASO’s directions to a football field on the outskirts of the village and looked back to find hundreds of people following the car, either on foot or on bikes. There was not a light in sight from the event location—it was one of the most rural events that we held in 2010 and there was a huge amount of excitement from the crowd! There were a lot of individual highlights too—when someone at the event comes to
you to thank you not only for bringing the World Cup to their community but for providing an accessible opportunity to find out more about HIV, get tested for the first time or talk to their partner about HIV—it makes all the long drives, car problems, exhaustion and sleeping in very much “less than salubrious” establishments more than worthwhile! This will run in June. Is there still time to support Africa Goal or something like your Trading Footballs program, which swaps homemade soccer balls in communities for industry-standard ones and then exhibits the handcrafted ones to raise funds to purchase more balls and HIV/AIDS projects? Absolutely! We have an on-line fundraising site: http://africagoal2014.causevox. com/ where anyone who would like to support the project can make safe and secure donations. Once the project starts, any funds raised will be used to purchase factory-standard footballs for our Trading Footballs program and to print HIV information materials—the materials are hugely popular and our partners are always asking whether we can print more for them. For whom is Africa Goal rooting, on the field and off? Africa Goal is always rooting for Africa— both on and off the field! We would be thrilled to see an African team take the tournament
title and, even more so, would love to see the global goal of zero new infections, zero AIDS-related deaths and zero HIV-related stigma brought to reality across the continent which has been hardest hit by the epidemic. For more information about Africa Goal, log on to: www.africagoal.com. Chael Needle is Managing Editor of A&U.
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Culture of AIDS continued from page 50
ination, housing, and testing and treatment access—whatever stands in the way of allowing individuals and communities to thrive. NBLCA sees the For Colored Girls event as another innovative way to get the message out. Says Mrs. Fields: “For Colored Girls speaks to the most challenging issues that are facing women as they relate to HIV/AIDS and other health disparities and the disproportionate impact that it has on women of color.” Regarding the collaboration with NBLCA, McMillan-McCall says: “There was lots of talk this year about Affordable Health Care. What was left out of the conversation: once you get everyone to drink from this well, this wonderful Affordable Health Care water, what’s next?” That is, access will mean little without empowered individuals who seek to stay on top of their mental and physical health. While the New York City event is taking place, over thirty Black theaters and diverse institutions around the world will be celebrating Shange’s rainbow of women
Stigma Project continued from page 45
Scott: Earlier this spring we became non-profit. After two years without a budget, we finally can receive tax-deductible donations. We need funds to get our ads on billboards and on television. One can contribute on our Web sites: www.thestigmaproject.org or www.tsplibrary.com. Another way, which is equally important, is to spread the word through social media. Encourage people to “Like us” on Facebook, even if they’re negative—especially if they’re negative. We have a long way to go but we’ll get there! What would you say is the the number-one cause of HIV stigma? Chris: There really is no one cause but you could sum it up with the word, Perception. The perceptions people have of themselves and others, changes the way they interact, socialize, communicate and ultimately, the way they view the world. This is very true with people who are HIV positive who often, due to perceptions and public opinion, are victims of rejection and
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in various ways. There will be other staged readings, of course, but also book club discussions of the work—in-person or via social media; in homes or public forums— starting on June 13 and ending on June 16. HUE MAN, an on-line bookstore, is the project’s exclusive retailer and will offer discounts on the purchase of the play. Project1VOICE will also encourage different types of expression with voter registration drives, creative writing and mentoring programs, and visual arts programs all focused on the woman-centric theme. McMillan-McCall hopes, too, that 1VOICE/1PLAY/1DAY will help return For Colored Girls to the best-seller lists and make this “anthem for all women,” as he calls it, trend on Twitter and other social media sites. McMillan-McCall is thrilled to be able to share For Colored Girls in as many venues as possible. He marvels at the play’s ability to connect women, and remarks on how it has become a touchstone for multiple generations of actresses, even those who are not African-American. Its impact on audiences is undeniable, and its impact on the history of theater and its ability to represent the needs, desires, and hopes of African-American women during a time
when their voices were often sidelined by both the civil rights and white-led women’s lib movements is perhaps immeasurable. The legacy of African-American theater, and its power to enlighten and entertain communities, is the heart of Project1VOICE. McMillan-McCall created the non-profit during the economic down-turn of 2008–2009, when he noticed African-American theaters and other minority-based arts institutions were closing their doors, most likely for good. “We were losing the places we would call ‘home.’ Places to nurture our stories. [I asked myself:] ‘How can we keep the narrative alive, but using a twenty-first century paradigm? How do we connect with a younger generation, to make young people understand the importance of our narrative of survival?’” The stakes are vital, says McMillan-McCall. “History moves us forward.”
denial. They are discredited, disregarded, undervalued, and are put at a distance socially, which more often than not leads to their isolation. Scott: I don’t think there is a single cause either. It’s the result of a lot of things that have come together over the last thirty-two years. If I had to pick something that I think has had the biggest influence on HIV stigma, it’s the lack of education and understanding among HIV-negative people, and their lack of caring to become more educated and informed, or, as Chris said, perception.
HIV. I had positive friends and I was pretty up-to-date on the latest information. That said, I was still terrified about getting infected. I wouldn’t sleep with someone who was positive. I asked people questions like “Are you clean?” I also felt that regardless of what I knew about HIV, if I were to get it, my life would be over. Today, I’m a lot more knowledgeable and [he pauses]...my life is definitely not over.
How do you see HIV today as opposed, say, to five years ago? Scott: We’ve come a long way even in two years. But in the past five years we’ve been able to successfully turn HIV into a manageable disease. The downside is that everyone who wasn’t directly affected by it forgot about it. The evening news stopped talking about it because fewer people are dying. There was this false assumption that HIV was a thing of the past—and that obviously has played a role in the steady increase in infection rates. Chris: Personally, five years ago I thought I knew all there was to know about
For information about 1VOICE/1PLAY/1DAY and all of the events leading up to June 27, National HIV Testing Awareness Day, log on to www.project1VOICE.org. For more information about the National Black Leadership Commission on AIDS, log on to: www.nblca.org. Chael Needle wrote about Africa Goal in this issue.
Any other comments, you guys? Scott: I just want to say thank you for all of the wonderful and encouraging e-mails and messages we get daily from people telling us their story and how much our work has impacted their lives. We may not respond to every single message, but we definitely read each and every one. If it weren’t for that kind of support and belief in our organization, who knows where we’d be right now. So that’s all. Now let’s get to work. Chris: What he said…. For more information about The Stigma Project, log on to: www.thestigmaproject.org. Dann Dulin is Senior Editor of A&U. A&U • JUNE 2014
JUNE 2014 • A&U
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Survival Guide
[a portrait by sean black]
[
Baby “J”
Miami, Florida HIV-negative newborn Baby “J” with her mother Quintara “Lady Queen” Lane, AIDS advocate born with HIV Sean Black is an Editor at Large of A&U.
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A&U • JUNE 2014
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