JUNE 2015 • ISSUE 248 • AMERICA’S AIDS MAGAZINE
ON THE HISTORY OF AIDS ACTIVISM, TREATMENT ACCESS & PrEP ADVOCACY
HIV IN INDIANA ADVOCATES RESPOND TO THE EPIDEMIC IN THE HOOSIER STATE
BRIGHTER HORIZONS ANTOINE B. CRAIGWELL PROMOTES SELF-CARE AMONG BLACK GAY MEN
plus • Linda Stein • Nicholas Downs • Fighting Pride Month Blues
What is STRIBILD? STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL of virus in their blood) and whose healthcare provider determines that they meet certain other requirements. STRIBILD combines 4 medicines into 1 pill to be taken once a day with food. STRIBILD is a complete single tablet regimen and should not be used with other HIV-1 medicines. STRIBILD does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking STRIBILD. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body ﬂuids. Never reuse or share needles or other items that have body ﬂuids on them.
IMPORTANT SAFETY INFORMATION What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain.
• You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking STRIBILD, your hepatitis may suddenly get worse. Do not stop taking STRIBILD without ﬁrst talking to your healthcare provider, as they will need to monitor your health. STRIBILD is not approved for the treatment of HBV.
Who should not take STRIBILD? Do not take STRIBILD if you: • Take a medicine that contains: alfuzosin, dihydroergotamine, ergotamine, methylergonovine, cisapride, lovastatin, simvastatin, pimozide, sildenaﬁl when used for lung problems (Revatio®), triazolam, oral midazolam, rifampin or the herbal supplement St. John’s wort. • For a list of brand names for these medicines, please see the Brief Summary on the following pages. • Take any other medicines to treat HIV-1 infection, or the medicine adefovir (Hepsera®).
What are the other possible side effects of STRIBILD? Serious side effects of STRIBILD may also include: • New or worse kidney problems, including kidney failure. Your healthcare provider should do regular blood and urine tests to check your kidneys before and during treatment with STRIBILD. If you develop kidney problems, your healthcare provider may tell you to stop taking STRIBILD. • Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may get stronger and begin to ﬁght infections.
Tell your healthcare provider if you have any new symptoms after you start taking STRIBILD. The most common side effects of STRIBILD include nausea and diarrhea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.
What should I tell my healthcare provider before taking STRIBILD? • All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking STRIBILD without ﬁrst talking with your healthcare provider. • If you take hormone-based birth control (pills, patches, rings, shots, etc). • If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD. • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in STRIBILD can pass into breast milk, and it is not known if this can harm the baby. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Brief Summary of full Prescribing Information with important warnings on the following pages. *STRIBILD is a combination of the medicines TRUVADA (emtricitabine and tenofovir disoproxil fumarate), TYBOST (cobicistat), and VITEKTA (elvitegravir).
STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL of virus in their blood) and whose healthcare provider determines that they meet certain other requirements. STRIBILD does not cure HIV-1or AIDS.
I started my personal revolution Talk to your healthcare provider about HIV-1 treatment. STRIBILD is a complete HIV-1 treatment in 1 pill, once a day that combines the medicines in TRUVADA + TYBOST + VITEKTA.* Ask if itâ€™s right for you.
Patient Information STRIBILD® (STRY-bild) (elvitegravir 150 mg/cobicistat 150 mg/emtricitabine 200 mg/ tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information. What is STRIBILD? • STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD can also be used to replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL of virus in their blood), and have been on the same HIV-1 medicines for at least 6 months and have never failed past HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements. • STRIBILD is a complete HIV-1 medicine and should not be used with any other HIV-1 medicines. • STRIBILD does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects, including: 1. Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take STRIBILD or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: • feel very weak or tired • have unusual (not normal) muscle pain • have trouble breathing • have stomach pain with nausea or vomiting • feel cold, especially in your arms and legs • feel dizzy or lightheaded • have a fast or irregular heartbeat 2. Severe liver problems. Severe liver problems can happen in people who take STRIBILD. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: • your skin or the white part of your eyes turns yellow (jaundice) • dark “tea-colored” urine • light-colored bowel movements (stools) • loss of appetite for several days or longer • nausea • stomach pain You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. 3. Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take STRIBILD, your HBV may get worse (flare-up) if you stop taking STRIBILD. A “flare-up” is when your HBV infection suddenly returns in a worse way than before.
• Do not run out of STRIBILD. Refill your prescription or talk to your healthcare provider before your STRIBILD is all gone • Do not stop taking STRIBILD without first talking to your healthcare provider • If you stop taking STRIBILD, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking STRIBILD Who should not take STRIBILD? Do not take STRIBILD if you also take a medicine that contains: • adefovir (Hepsera®) • alfuzosin hydrochloride (Uroxatral®) • cisapride (Propulsid®, Propulsid Quicksolv®) • ergot-containing medicines, including: dihydroergotamine mesylate (D.H.E. 45®, Migranal®), ergotamine tartrate (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), and methylergonovine maleate (Ergotrate®, Methergine®) • lovastatin (Advicor®, Altoprev®, Mevacor®) • midazolam, when taken by mouth • 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 elvitegravir, cobicistat, emtricitabine, or tenofovir (Atripla®, Complera®, Emtriva®, Truvada®, Tybost®, Viread®, Vitekta®) • Other medicines that contain lamivudine or ritonavir (Combivir®, Epivir® or Epivir-HBV®, Epzicom®, Kaletra®, Norvir®, Triumeq®, Trizivir®) STRIBILD is not for use in people who are less than 18 years old. What are the possible side effects of STRIBILD? STRIBILD may cause the following serious side effects: • See “What is the most important information I should know about STRIBILD?” • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking STRIBILD. Your healthcare provider may tell you to stop taking STRIBILD if you develop new or worse kidney problems. • Bone problems can happen in some people who take STRIBILD. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. • Changes in body fat can happen in people who take HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms and face may also happen. The exact cause and long-term health effects of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having any new symptoms after starting your HIV-1 medicine.
The most common side effects of STRIBILD include:
- disopyramide (Norpace®)
- ethosuximide (Zarontin®)
Tell your healthcare provider if you have any side effect that bothers you or that does not go away.
- flecainide (Tambocor®)
• These are not all the possible side effects of STRIBILD. For more information, ask your healthcare provider.
- fluticasone (Flovent®, Flonase®, Flovent Diskus®, Flovent HFA®, Veramyst®)
• Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
- itraconazole (Sporanox®)
What should I tell my healthcare provider before taking STRIBILD? Tell your healthcare provider about all your medical conditions, including:
- ketoconazole (Nizoral®) - lidocaine (Xylocaine®) - mexiletine - oxcarbazepine (Trileptal®)
• 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.
- phenytoin (Dilantin®, Phenytek®)
- 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 over-the-counter 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®)
- phenobarbital (Luminal®) - 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 - 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: December 2014
COMPLERA, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, the STRIBILD Logo, TRUVADA, TYBOST, VIREAD, and VITEKTA are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. © 2015 Gilead Sciences, Inc. All rights reserved. STBC0180 03/15
I’ve had a long history working with people living with AIDS, so I knew this was a community that I wanted to be a part of. — Nkatha, Rider No. 95
ork o new Y
7, 2 2 – 5 2 r mbe
c o n t e n t s June 2015
30 Cover AIDS Activist Peter Staley Talks with A&U’s Lester Strong About How the Lessons of the Past Inform Current Strategies for Championing Treatment & Prevention Access
Features 26 Gallery Artist Linda Stein Reimagines Armor as Symbols of Protection, Strength & Empowerment 36 What’s the Matter with Indiana? Advocates & Public-Health Officials Respond to an Urgent Epidemic of HIV and Hep C Infections 38 Materials of Survival Artist Grahame Perry Draws on Everything from Photography to Antiretroviral Meds to Document Living with HIV Long-Term 42 By Proxy, By HIV Antoine B. Craigwell Hopes His Organization, Depressed Black Gay Men, and Film Dismantle the Isolation & Feelings of Shame that Lead to Self-Harm cover by Sean Black
Brave New World
A Woman’s Voice
The Culture of AIDS
Lights, Camera, Activism!
ust the Two of Us” is a song performed by Grover Washington, Jr., and the latest inductee into the Rock and Roll Hall of Fame, Bill Withers (who also wrote this 1981 classic radio staple). It’s a song I can’t get out of my head as it reminds me of the two weeks recently spent with my mom. It was definitely a time of bonding: She was with me the whole time in the hospital while I was recovering from a mild stroke. My mom’s eighty, but it was as if I were her baby all over again. It’s this dedication that we as adult children take for granted—especially when living daily with a serious illness such as HIV/AIDS. Although we’re not quite sure what caused the stroke, some of my doctors pointed to the side effects caused by first-generation HIV medications: high cholesterol, high triglycerides, which put the body at greater risk for diabetes, stroke, heart disease, and vascular complications. Considering the mis-dosing and the resulting toxicity of the pre-HAART era, I am very alert to the fact that HIV meds have vastly improved. When my AIDS doc paused on her rounds in the stroke unit to point out to me, “don’t miss a dose; because HIV will kill you if it goes untreated,” I listened. I listen more carefully now than twenty years ago when I would sometimes skip doctor’s appointments. Why am I better at adherence now? I have more hope, simply put. With the next-generation drugs, individuals very often have the time to figure out which regimen works best for them if they hit a snag with side effects or resistance. But time is of the essence. If you don’t know your status, you can’t make that choice. If you do not know you are positive, you cannot start treatment early, and fare better healthwise, as interim results from the START study suggest. But the question of “when” always comes with a footnote of warnings. I’m sure all of us have heard the warnings on television ads for nearly every direct-to-consumer medicine that’s out there; that’s the state of modern medicine—the weighing of risk vs. reward. But for so many HIV-positive baby boomers (my generation), it’s not an easy choice: Go without the meds in order to go without the side effects or take the meds in order to kill the virus. Such is the quixotic miracle of
A M E R I C A’ S A I D S M A G A Z I N E issue 248 vol. 24 no. 6 June 2015 editorial offices: (518) 426-9010 fax: (518) 436-5354
modern AIDS medicine: Do no harm but keep the patient well-informed about better diet, more exercise, and keeping regular appointments with your AIDS doc. Fortunately, many of today’s anti-HIV meds cause less harm than the Model T versions that I took several decades ago. This month’s cover story, Peter Staley, was one of the earliest AIDS activists to actually get the U.S. government to speed up the approval process of life-saving HIV drugs. If it weren’t for Mr. Staley and his Treatment Action Group, also known as TAG, we might still be dying both in the hospitals as well as in street demos. His efforts to organize massive direct actions was what got the FDA, the CDC, and the gay community empowered to take on the lethargy and the apathy that was threatening the lives of millions around the world. In Lester Strong’s interview with Mr. Staley, we find out what originally motivated the AIDS activist: “It’s the role of any vibrant civil society to actively speak out. People live in their own world and sometimes need to be shaken out of their complacency. They need to be pushed out of their comfort zones.” As a mover and shaker, Peter Staley brought an earthquake to New York City as well as the corridors of power in Washington. As Staley succinctly states: “We had to make [Americans] uncomfortable with what the country was doing, which was letting thousands of its owns citizens die because of neglect.” Well said. Others in this issue are raising awareness and taking pride in being part of a substantial civil rights movement. Columnist Keiko Lane reminds us as we celebrate Pride to practice self-care as part of our embodied survival in a society that oppresses us. Antoine B. Craigwell also promotes self-care with his organization, Depressed Black Gay Men. Artist Linda Stein, with her armor-like sculptures, offers new visions of self-empowerment. As the drugs target each step in the HIV replication process, so too must we approach AIDS activism from every angle, as we minimize the risk and maximize the reward.
Editor in Chief & Publisher David Waggoner Managing Editor: Michael Needle Senior Editors: Dann Dulin, Sean Black Editor at Large: Chip Alfred Special Projects Editor: Lester Strong Literary Editor: Brent Calderwood Arts Editor: Alina Oswald Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, V. Anderson, Heather Arculeo, Larry Buhl, Ruby Comer, Nancy Ellegate, Diane Goettel, Sally Hessney, Keiko Lane, Angela Leroux-Lindsey, Sherri Lewis, Mark Rebernik, Dale Reynolds, Elizabeth Rodgers, David Rosenberg, Corey Saucier, Mariel Selbovitz, Justin B. Terry-Smith, Patricia Nell Warren, Chuck Willman, Jeannie Wraight, Robert Zukowski Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Fred Brashear, Jr., Tim Courtney, Duane Cramer, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Tara Lessard, Tom McGovern, Nancy Perry, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 Chris Companik, 1957–2012 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@ aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2015 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 12210-2743, USA
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WE KNOW HIV/AIDS medication therapy But we also know you want a pharmacy that cares for the whole you. That’s why the pharmacists at our HIV-specialized pharmacies offer complete, compassionate care for your individual needs now and in the years ahead. You can rely on us to provide services such as: • Expert guidance in managing HIV, combined with other conditions you may have • A range of immunizations to help you avoid illness*
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x o b l i ma Donna Mills is one of my favorite actresses [cover story, “Dramatic Range,” by Sean Black, April 2015]. I couldn’t believe how great she still looks; your photos were just amazing. I thought that Knots Landing was one of the best soaps on the air. For me
APRIL 2015 • ISSUE 246 • AMERICA’S AIDS MAGAZINE
FROM ACTING TO MOTHERHOOD TO AIDS AWARENESS, THE QUEEN OF DRAMA SHOWS HER RANGE
BONDS OF FRIENDSHIP The Each Other Project Nurtures Health While Nurturing Community
WHY HE WALKS
ACTOR GARY COWLING LACES UP FOR AIDS WALK NY
plus • Kia Labejia • Kevin Frost • Willam Belli • Red Flamboyant
it beat out Dynasty and Dallas. Donna had some important things to say about AIDS back in the early eighties. She hypothesized about playing opposite gay men who had AIDS: “Oh my God what if I have to do a scene with a gay person and I have to kiss him. I always thought that was ridiculous. That cannot be the way HIV is transmitted otherwise everyone would have it. It just didn’t make sense to me. And so I got on the bandwagon and said ‘that’s not the way [HIV is transmitted].’” Thanks, Donna, for getting on the bandwagon. —Phillipa Mendez-Rodriguez Laredo, Texas
GMHC a lot of luck in the future. —Eddy Constantine New York, New York
Jimmy Hat Killian James just made my day in Ruby’s Rap [April 2015]. I would love to go on a date with Killian as an escort. But I think he probably gets a lot of money for his services. I read with sadness that Killian’s father became HIV-positive and died from AIDS-related causes. I hope that Killian is very careful and uses condoms as so many porno stars have died during the epidemic of AIDS. Anyway I wish Killian a lot of luck in his
“Donna’s commitment to Desert AIDS Project and to The Steve Chase Humanitarian Awards is truly wonderful. Donna answered a question that I Iiked: ‘What’s the one word you would use to ‘Imagine No AIDS’?’ Her response: ‘Heavenly. It would be heavenly not to have that terrible scourge anymore.’”
Walking the Walk It’s just really amazing that AIDS Walk New York is turning thirty this year [NewsBreak, April 2015]. I didn’t make it that early in walking the walk. I started in 1990. I can’t believe that so much money was raised and so many people have participated. It is really a tribute to the people that have run and are still running GMHC. GMHC is one of the best organizations in the country; it has helped so many gay people and people with HIV/AIDS. I wish I could have been there this year but due to illness I cannot participate. I wish
career and I can’t believe that Killian’s mother supports him. Wow! —Andrew Weeland Send e-mail to: firstname.lastname@example.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 2015
photo by Sean Black
No Run of the Mill
What I remember about Donna Mills is her role in the film Play Misty for Me. What a great suspense movie. I always liked Clint Eastwood, and Jessica Walters was really evil. Donna’s commitment to Desert AIDS Project and to The Steve Chase Humanitarian Awards is truly wonderful. Donna answered a question that I Iiked: “What’s the one word you would use to ‘Imagine No AIDS’?” Her response: “Heavenly. It would be heavenly not to have that terrible scourge anymore.” —Martha Rivers Savannah, Georgia
NEWSBREAK Art Project Los Angeles Plastic Jesus, a Los Angeles-based street artist, has been chosen as the featured artist of Art Project Los Angeles, a five-years-strong annual fundraiser for AIDS Project Los Angeles. Plastic Jesus, who describes himself on Twitter as an “Urban Creative Strategist,” brings ironic and witty commentary to city spaces with pieces that are never pedestrian. He poked fun at the culture’s obsession with reality TV stars with “No Kardashian Parking Anytime” street signs, one of which was affixed curbside outside of the Kardashian sisters’ shop, Dash. He prodded us to look at the cost of personal debt with an installation piece that placed a stack of credit cards on top of a giant, unsprung mousetrap. The London-born artist also stenciled a tribute to Robin Williams, after the actor’s death. One of his more well-known stencils, “Stop Making Stupid People Famous,” which has popped up on streets in Los Angeles, New York, London, and Paris, will be featured in the Art Project catalogue and be part of the event’s live auction as a unique one-off canvas. His work will be featured alongside work by emerging as well as established artists, such as Keith Haring, Tom of Finland, Andy Warhol, Sage Vaughn, Shepard Fairey, and Ed Ruscha, at the live auction. The event starts with a silent auction and cocktail party at 6 p.m. On June 5, from 12 to 5 p.m., and on June 6, from 10 a.m. to 4 p.m., the gallery will be open to the public and no ticket is required. Art Project 15 takes place on Saturday, June 6 at Bonhams, an Plastic Jesus, Stop Making Stupid auction house in Hollywood, CaliPeople Famous, 2015, stencil acrylic fornia. Proceeds will benefit APLA and APLA Health & Wellness, which spray on cotton canvas, 36 by 24 together provide vital services to over inches. Courtesy of the artist 12,000 Angelenos every year. Since 1983, APLA has provided innovative HIV/AIDS services, offering to individuals and communities primary medical, dental, and behavioral health care services; HIV testing and STD screening; the Vance North Necessities of Life Program food pantry program; in-home health services; housing assistance; and HIV prevention efforts; to name a few. APLA Health & Wellness (APLAHW), a federally qualified health center, provides primary medical and oral health care, behavioral health services, HIV Kurt Weston, Losing the Light, 2004, photograph, 22 testing, PrEP counseling and management of eligible clients, STD screening/ treatment, and health education and HIV-prevention services, with a specific by 28 inches. Courtesy of the artist focus on low-income gay and bisexual men of color and transgender individuals living in Los Angeles County. For tickets and additional information, visit apla.org/artproject, facebook.com/ ArtProjectLosAngeles, and follow Art Project on Instagram @ArtProjectLosAngeles.
PrEP Up Alabama In response to an epidemic in the southern U.S. driven by stigma, discrimination, and social barriers that disrupt linkages to care, especially among young gay and bisexual men of color and transgender women, AIDS Alabama has launched a new campaign to normalize the conversation around HIV and improve the lives of individuals of all serostatuses—PrEP Up Alabama. JUNE 2015 • A&U
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PrEP Up Alabama will use social and digital media, as well as outdoor billboard and articles, to reach out to Black and Latino gay, bisexual, pansexual or non-identifying males about accessing health and wellness options, such as PrEP as an HIV prevention tool. The campaign will be launched with the help of its ambassador, Wade Davis, a former NFL cornerback and LGBT advocate. Across two days, July 24 and 25, Davis will participate in a strategy session to discuss best practices to address health disparities among Black and Latino men in the South, and he will also host a screening of Blackbird, a film directed and cowritten by Patrik-Ian Polk [A&U, October 2014] that he helped produce. Starring Mo’Nique [A&U, February 2004], Isaiah Washington, and Kevin Allesee, Blackbird is an updated take on Larry Duplechan’s novel of the same name; it explores how sexual identity and empowerment is affected by silence and stigma surrounding homosexuality in the South, particularly among Black and faith-based communities. Following the July 25 screening, members of the cast and the director will participate in a Q&A session moderated by Davis. Organizers hope to attract targeted viewers from the tri-state area to the screening, which will have its area premiere at the PrEP Up Alabama event. The goal is to increase testing and linkages to care among those individuals at increased risk of contracting HIV. AIDS Alabama, a statewide non-profit, focuses on housing, supportive services, policy and advocacy, HIV prevention education, and free and confidential testing, thanks in part to a mobile testing unit. For more information, visit www.prepupal.org and www.blackbirdthemovie.com.
photos by Stephanie Schertz/AFC
AIDS Foundation of Chicago Turns 30! Amy Landecker, one of the stars of Amazon’s breakout hit Transparent, served as master of ceremonies for AIDS Foundation of Chicago’s thirtieth-year celebratory gala on May 16 at the Hilton Chicago. Drawing nearly 700 guests, the event offered hors d’oeuvres and cocktails, the chance to win raffle prizes such as getaways to Aruba and New York City, and a punchboard at its reception. Inside the International Ballroom, intricately constructed gold centerpieces at every table, sumptuous red lighting, and a “30” sculpture that commemorated AFC’s thirty years of service (all created and donated by Kehoe Designs) swept guests into a soft-hued ambience. A delectable dinner and dancing thanks to tunes spun by DJ Kiss. The main live auction, facilitated by Landecker and Gary Metzner, senior vice president of Sotheby’s, offered vacations to Hawaii, Las Vegas and Coronado Island. A special live auction, “Paddle Raise for PrEP,” supported efforts to build awareness and access to PrEP, an HIV prevention method that is the focus of recent AIDS Foundation of Chicago initiatives. Master of Ceremonies Amy Landecker Two longtime Board members—Ernie Rodriguez of Gilead, who was presented and father John Landecker with the Lori Kaufman Volunteer Award, and Thomas Kehoe of Kehoe Designs, who was presented with the Community Impact Award—received well-earned recognition for their contributions to the Chicago-based non-profit. In his remarks at the event, AFC President/CEO John Peller urged the attendees to build on the momentum created by their commitment to AIDS, old and renewed: “New cases have been cut by 40 percent in the past decade, but with that progress came apathy. We have made great strides over the years but AIDS is still a problem and we must not lose this moment to continue the fight.” Landecker, a former AFC staff member, also weighed in what the organiation has meant to her, saying: “I’m so thrilled that my pursuit of being an actress paid off with my dream job on Transparent, which combines my love of acting with my love of social activism, which started twenty years ago when I worked at AFC.” AFC President/CEO John Peller; Lori Kaufman; Tom Kehoe The event raised approximately $400,000 for ongoing pre(honored with the Community Impact Award); Ernie Rodrivention, care, and advocacy services in the fight against the HIV guez (honored with the Lori Kaufman Volunteer Award); J. Ben epidemic nationwide. Stringfellow For more information, visit: www.aidschicago.org. JUNE 2015 • A&U
Ruby Comer: This pumpkin bread is…out of this world. What a little chef you are. Nicholas Downs: [He blushes slightly, nods, and shoots a grin from his eternal happy-go-lucky face.] In Is It Just Me?, I noticed on the nightstand
of your character, Blaine, that there was a photograph of you taken in front of the Forbidden City in Beijing. Is that for real? Yes, I was there in 2009 promoting another film. I also visited the Great Wall, The Nest, and ate some terrific food. I was there several years ago myself and found China quite an adventure. I’d go back in a heartbeat. Tell me, how did you and Nick meet? We met at the Hollywood Athletic Club. We had gone out that evening for a little dancing but at the end of the night, we both met the man of our life. How tender—and what an iconic place! My god, back in the day, membership included Joan Crawford, Cary Grant, Clark Gable, Mae West, Charlie Chaplin, and Jean Harlow. Say, you mentioned one time that Jaws was one of your favorite films. What’s another one? Oh, Ruby, I love the film In America, directed by Jim Sheridan. Oh my Lord, I can’t believe my ears. I loved that film too. It’s so underrated. Yes, yes…with Paddy Considine and Samantha Morton, both Brits. [We both take a sip of red wine.] Nick, when did you first hear about the epidemic? When I was a kid. I remember hearing about this new virus that was killing people. Some years later I saw the AIDS Memorial Quilt on television. Oh, Ruby, that image was so powerful. For an eleven-year-old, it left quite an impression. How has the epidemic affected you? Well, I’ve been lucky because I have not lost anyone close to me, but I have very close friends who are HIV-positive. I was in their lives before they were diagnosed, during the time when they discovered they were positive, and now as they live with the disease. All of them have chosen a healthy lifestyle. [He halts and sighs caringly.] I couldn’t imagine life without them....
What have you learned through them about the epidemic? How an unhealthy lifestyle can be deadly if you’re HIV-positive, and how making a few changes can save your life. Have you always worn a condom while having sex? I don’t have a one-hundred percent track record—and those moments are on me. I think back to when I was in school and one day we had someone teach us about safe sex. I wonder if they are still doing that in schools? Some still believe that teaching about STD’s is condoning sex, but that couldn’t be further from the truth. It’s beyond this broad why people choose to remain an ignoramus. When did you first get tested? I actually got tested when I had my first relationship. It was my idea and I was the younger one. They guy who drew my blood continued on page 53 A&U • JUNE 2015
Ruby illustration by Davidd Batalon; Downs photo by Deidhra Fahey Photography
’m up over Downs! That’s Nicholas Downs my lovelies. Mutual friends introduced us some months ago at an APLA event and we cottoned instantly. An upbeat, sparkling personality, Nick has a passion for acting. He knew he had a showbiz calling even as a kid back in Iowa. He and his nine siblings—yes, nine!—could have played the Von Trapp children in The Sound of Music, with three extras to boot! Nick has appeared in the films Pearl Harbor, The Holiday, and The Girl Next Door. One of my favorites is the romantic comedy Is It Just Me?, where Nicholas plays a gay L.A. columnist a la Carrie Bradshaw. On the small screen in NCIS: Los Angeles, Cold Case, The Guardian, and the soaper, The Young and the Restless His upcoming film, Second Chance, is inspired by the “Miracle on the Hudson,” when a commercial jet landed on the Hudson River. He’s also in a Lifetime movie, Beautiful and Twisted, with Rob Lowe and Candice Bergen. This thespian is in demand! His latest project, Playing It Straight, a short film that played the film festival circuit, can now be seen at: https://vimeo. com/65185923. The thirty-nine-year-old has invited La Comer to his cozy West Los Angeles home which he shares with his partner, Nick, who’s out of town. They are known in town as “The Nick’s.” They plan to tie the knot in celebration of their twelve years together this fall. After checking with me on my dietary needs, Nick dishes out a mean chicken stirfry, loaded with fresh organic veggies and tons of tasty herbs from the garden. A matzo ball soup serves as the meal’s opening act. For dessert, Nick bakes….
Question: What would you do if you were in a situation and you needed HIV care and all the places you’re calling are telling you they are overbooked and can’t take any more people at the time. How would you address this? I also have another question. Did you hear about a law that passed in South Africa that requires all people who test positive for HIV to get a tattoo that conveys this fact? —Brian Edwards Let me address your first concern. Being in the Washington, D.C., area, it is hard for me to fathom how such a thing could happen. I would like you to think about this issue as a challenge that we should meet head-on, as some of us who have HIV-positive are in areas that are less able to care for patients living with HIV. If you are very concerned about your own health, as I am, do everything possible to sustain it. Look at which state has the best healthcare for me. See if you can afford to move to seek the care you need.
I know this may not be easy. Some people have resources to be able to get a job where they would like to live. If you don’t have those resources, use your networks to look for a job so that you can move to a place that might help you better than the state you currently reside in. I’ve never heard of a place that it so booked that they were never able to take me in as a patient, or a state where there are no other providers that you can turn to to be able to get proper healthcare. Keep searching, baby, or find another place that will better serve your needs. Honestly, a person’s health should be paramount on the list of priorities. This is our life we are talking about here and it should be taken seriously. Now for your second question. OMG (Oh My Goodness) I personally don’t know if this is a hoax or not but I did some research on the story. So allegedly the South African president, Jacob Zuma, has signed a provocative law that would make sure that any South African who tests HIV-positive will not only be able to access counselling and medication but will also be marked with a permanent tattoo near or around their genital parts to warn their future intimate partners. Giving people who have tested positive access
to counseling and medication for HIV is a great thing, but forcing them to get a permanent marking on themselves is wrong! I personally do have a tattoo on my body that does signify that I am HIV-positive but it was because I wanted to and it is an extremely personal choice and symbol to me. South Africa has already had its troubles with HIV and this would only perpetuate those same issues. Branding someone because they have an illness/disease is wrong. It will only make the general public scared to get tested for HIV because of fear of being branded permanently with an unwanted tattoo. Therefore nobody will want to get tested and the disease will spread faster than before. It is hard to get people to do something that would benefit them if you are going to penalize them for doing the right thing. South Africa has had an issue with HIV since it was first discovered and due to political issues; past leadership has held on tight to HIV denialism and stigma to fuel their own personal agendas. If this is a hoax, this is horrible—the most horrible hoax I’ve heard of in a long time. It is so personal to me and millions of others that are HIV-positive around the world. ◊ A&U • JUNE 2015
photo by Don Harris © Don Harris Photographics, LLC. all rights reserved
Justin B. Terry-Smith, MPH, has been fighting the good fight since 1999. He’s garnered recognition and awards for his work, but he’s more concerned about looking for new ways to transform society for the better than resting on his laurels. He started up in gay rights and HIV activism in 2005, published an HIV-themed children’s book, I Have A Secret (Creative House Press) in 2011, and created his own award-winning video blog called, “Justin’s HIV Journal”: justinshivjournal. blogspot.com. Presently, he is working toward his doctorate in public health. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at email@example.com.
Bringing hearts together since 1998
P zMatch.c m
Things We Don’t Say Out Loud
his is the truth. I’m still terrified of dying of AIDS. I’ve been HIV-positive for fifteen years. And over those fifteen revolutions around the sun, there have been phenomenal leaps in research: There is the magical “one-pill-a-day” treatment, the new science that defines “undetectable viral load” as the promise of a non-infectious generation of HIV-positive people, and the “just-around-the-corner” miracle of a cure. A cure!! These are the glorious beacons of white light that warm our hearts, paste the pages of pharmaceutical adds, and these are the stories that we tell the newly infected after getting their first positive results… “It’s all going to be all right.” We say. “If you get into treatment and take your meds the way you are supposed to you can live a long and fulfilling normal life.” We soothe. “HIV isn’t the death sentence it used to be.” We shout into the faces of anyone who will listen. But when I’m in bed alone with a 103-degree fever, chills, and a rib-shattering cough deep in my chest, I mostly stare at the ceiling praying that the big bad AIDS monster is not finally coming to drag me screaming into a sad sad oblivion. I know I’m not supposed to say it out loud, but even thirty years after the “bad days,” with the best drugs on the market, in the land of milk and honey—with my pretty blue eyes and my proud activist mentality—every time I get a slight cough, I wonder if this is the one that is going to take me out. Last month there was a blip in my viral
load. This means that for the first time in many years, I am no longer the lauded gold standard. There are higher than 50 counts of virus per milliliter in my blood. I am not undetectable. My doctor is a short, bright-eyed, curly haired, talkative lady who I’m pretty sure is going through menopause. She comes in to the office with her bubble gum personality and her clipboard, and she reads me my results. She explains that it’s not that big of a deal, and that everything is going to be all right, and that anything below 200 is still within the “standard for undetectable” and that we will change my meds and go from there. She sees the white in my eyes, and hears that I am breathing heavy, so she holds my hand and repeats: “This is normal. It happens all the time. You are going to be fine. REALLY don’t worry about it.” But what else is she going to say: “This is terrible; you are going to die! Go home. Freak out! And if you are still alive, I’ll see you in three months.” She’s not allowed to say that out loud. So I go home and try not to worry about it. But this last week I haven’t been feeling well…. Yesterday I had a date with a beautiful black “muscle bear” with kind eyes and a master’s degree in business that I met a couple of weeks ago while at the dentist…. So we are at dinner at “Tinder Greens” in Hollywood on our first date. And I’m trying to me cute, and make a good impression, because he’s a top; and I like tops. But I have this little tickle of a cough. And I have to keep saying excuse me every few minutes. Cough. “Excuse me.” Cough. “Excuse me.” And we are talking about where we were raised, and the intersections of race and class and how that affects our participation in the queer community, and a couple of sentences about our exes, and about how one in three gay black men are
HIV-positive…. Cough. “Excuse me.” And I blame the cough on hitting the gym a little too hard this week. And I apologize, because for some reason we always feel the need to apologize for our illnesses. And I tell him how handsome I think he is, because black men are beautiful. But I want to tell him that I suspect that my HIV meds are no longer working, and that perhaps the cavity in my tooth has caused an infection that is now running rapid in my body, and that if I don’t go to the emergency room soon I’m probably going to die. But you can’t say that out loud. So we cut the date early and I head home. And today I wake up fully and completely sick. I have a fever, and chills, and there is phlegm everywhere. And it’s Sunday morning so I can’t call the doctor. So I just stare at the ceiling and wait for the AIDS monster to take me. And as my final act I go onto Facebook to tell the world: “Goodbye. I’m dying of AIDS.” But on my wall I see that a few of my friends are also sick—which means that there is probably just something going around. Which makes me so happy! I want to scream. “Hurray! I’m so happy you bastards are also sick! Because that means I’m not dying of AIDS!!” But you can’t really say that out loud. Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Nonsense can be found at www. justwords.tumblr.com.
photo by Yuska Lutfi Tuanakotta; illustration by Timothy J. Haines
the little tickle in my throat—and the fearful thoughts it brings
A&U • JUNE 2015
An Educated Generation
n April, I participated in AIDSWatch, the largest annual national constituent-based advocacy event focused on HIV and AIDS in the United States. AIDSWatch is a partnership of the Treatment Access Expansion Project, AIDS United, and the US People Living with HIV Caucus; it draws hundreds of HIV-positive advocates and their allies to Washington, D.C., to educate members of Congress and their staff about HIV and AIDS. All participants of AIDSWatch are provided with training on current science, legislative agendas, and conducting effective meetings with their elected representatives before they step foot in Congressional offices. At the completion of the most recent event, I sit here in the hotel with the realization that so many individuals are passionate about many of the same things. One of those things is the inclusion of Comprehensive Sex Education in schools. Why is this so important to me and many others? Well, growing up in a small farm town in Kansas, where sexual education was lacking, definitely did not help in preventing my diagnosis. Sex was considered taboo in our town, and if you were participating in even the discussion of it you were looked down upon. I even remember having to get a note, signed by our parents, just to attend an anatomy and physiology session that discussed mostly the anatomy and barely touched on sexual health. Even then, the only thing I remember involving HIV was two sentences; one describing what the acronym stood for, and the other stating that it was an STD. That was my HIV and AIDS education in school. I also realize that even if I was educated well on the issue, I probably wouldn’t have paid attention JUNE 2015 • A&U
to it. Women didn’t have HIV or AIDS; at least that is what I thought. In fact, this is what many women still think. We don’t think otherwise because the faces of HIV and AIDS are men not women. Even after I was diagnosed I was confused. I had never heard of a woman having HIV, and if she did, it had to be because she was a prostitute or a drug user. That was the stigma I held even as a twenty-five-year-old adult, which is the same stigma that many women still hold today. When I was at AIDSWatch I heard another woman living with HIV describe how she did receive the education, she knew what HIV was and how it was contracted, and she also knew that she would never get it, but she was wrong. She thought she didn’t have to worry about it either because she knew she was not promiscuous, a drug user, or a gay man. It took me five years, even after my diagnosis, to realize that the stigma I had was wrong and that only happened because I attended a retreat for women living with HIV and AIDS. Before I attended the retreat, I held many apprehensions. One of those apprehensions was that I was going to be the only woman with my story. I was wrong. I learned that there were many women with HIV, and not all of those women were former drug users, or prostitutes. In fact, the majority of the women I met were women who had contracted HIV from their spouses or significant others, which was exactly how I got it. How was this possible? And, how did I not know that this was even an issue for women? I did not have the answers then, but I was determined to figure it out, and change it. After the retreat I became more involved in the HIV community, and openly told my story anywhere I could. I did this
because I wanted every woman to know what I did not know until now. I wanted them to know that we are at risk even if we didn’t think we were. I wanted them to know that HIV did not discriminate. I had to educate any and every woman that would listen. I had to do something to change the stigma against HIV, and to give a face to the women living with HIV and AIDS. I had to do this because I knew there were other women just like me. So, why do I believe Comprehensive Sex Education is needed? It is needed because one out of every five new diagnoses are youth between the ages of eighteen and twenty-four. We need to educate our youth on HIV and AIDS before they reach this at-risk age; educate them so that when they are adults they can teach their children. Knowing the facts and being properly educated can eliminate future stigma and diagnosis of HIV. Only then will we begin the fight against further HIV and AIDS diagnoses, and begin the development of a good foundation that will ultimately lead to an AIDS-free generation. Heather Arculeo, a positive woman since 2007, works to educate, advocate, and empower others to make a change because “change is possible even if the transformation seems impossible.” She wants to continue to make a difference in the HIV community because she is not only a peer, a mother, a sister, a wife, an aunt, and a daughter, but also an example to other women living with HIV.
photo courtesy H. Arculeo; illustration by Timothy J. Haines
teaching & learning about hiv needs to start early
WHAT IS PREZCOBIX™ ?
• It is not known if PREZCOBIX™ is safe and effective in children under 18 years of age. • When used with other antiretroviral medicines to treat HIV-1 infection, PREZCOBIX™ may help:
Medihaler,® Migergot,® Wigraine,® Wigrettes®), methylergonovine (Methergine®), lovastatin or a product that contains lovastatin (Altoprev,® Advicor,® Mevacor ®), lurasidone (Latuda®), oral midazolam (Versed®), pimozide (Orap®), ranolazine (Ranexa®), rifampin (Rifadin,® Rifater,® Rifamate,® Rimactane®), sildenafil (Revatio®) when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin (Simcor,® Vytorin,® Zocor ®), St. John’s Wort (Hypericum perforatum) or a product that contains St. John’s Wort, or triazolam (Halcion®).
○ reduce the amount of HIV-1 in your blood. This is called “viral load.”
• Serious problems can happen if you take any of these medicines with PREZCOBIX.™
○ increase the number of CD4+ (T) cells in your blood that help fight off other infections.
What should I tell my healthcare provider before taking PREZCOBIX™ ?
• PREZCOBIX™ is always taken in combination with other HIV medications for the treatment of HIV-1 infection in adults. PREZCOBIX™ should be taken once daily with food. • PREZCOBIX™ does not cure HIV-1 infection or AIDS, and you may still experience illnesses associated with HIV-1 infection. You must keep taking HIV-1 medicines to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider if you have any questions on how to prevent passing HIV to other people. • Please read the Important Safety Information below and talk to your healthcare provider to learn if PREZCOBIX™ is right for you.
• About all health problems. Tell your healthcare provider if you have liver problems, including hepatitis B or hepatitis C, have kidney problems, are allergic to sulfa (sulfonamide), have diabetes, have hemophilia, or have any other medical condition, are pregnant, breastfeeding, or plan to become pregnant or breastfeed. Tell your healthcare provider if you become pregnant while taking PREZCOBIX.™ • About all medicines you take. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with PREZCOBIX.™ Keep a list of your medicines to show your healthcare provider and pharmacist. Do not start taking a new medicine without telling your healthcare provider. Your healthcare provider can tell you if it is safe to take PREZCOBIX™ with other medicines.
IMPORTANT SAFETY INFORMATION
What are the possible side effects of PREZCOBIX™ ?
What is the most important information I should know about PREZCOBIX™ ?
• The most common side effects of darunavir, one of the medicines in PREZCOBIX,™ include diarrhea, nausea, rash, headache, stomach area (abdominal) pain, and vomiting.
• PREZCOBIX™ may cause liver problems. Some people taking PREZCOBIX™ may develop liver problems which may be life-threatening. Your healthcare provider should do blood tests before and during your treatment with PREZCOBIX.™ ○ Chronic hepatitis B or C infection may increase your chance of developing liver problems. Your healthcare provider should check your blood tests more often. ○ Signs and symptoms of liver problems include dark (tea-colored) urine, yellowing of your skin or whites of your eyes, pale-colored stools (bowel movements), nausea, vomiting, pain or tenderness on your right side below your ribs, or loss of appetite. Tell your healthcare provider if you develop any of these symptoms. • PREZCOBIX™ may cause severe or life-threatening skin reactions or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. Call your healthcare provider right away if you develop a rash. ○ Stop taking PREZCOBIX™ and call your healthcare provider right away if you develop any skin changes with symptoms such as fever, tiredness, muscle or joint pain, blisters or skin lesions, mouth sores or ulcers, red or inflamed eyes like “pink eye” (conjunctivitis). • PREZCOBIX,™ when taken with certain other medicines, can cause new or worse kidney problems, including kidney failure. Your healthcare provider should check your kidneys before you start and while you are taking PREZCOBIX.™ Who should not take PREZCOBIX™ ? • Do not take PREZCOBIX™ with any of the following medicines: alfuzosin (Uroxatral®), cisapride (Propulsid,® Propulsid® Quicksolv), colchicine (Colcrys,® Mitigare,® if you have liver or kidney problems), dronedarone (Multaq®), dihydroergotamine (D.H.E.45®, Embolex ,® Migranal®), ergotamine tartrate (Cafergot ,® Ergomar ,® Ergostat ,®
• Other possible side effects include: ○ High blood sugar, diabetes or worsening diabetes, and increased bleeding in people with hemophilia have been reported in patients taking protease inhibitor medicines, including PREZCOBIX.™ ○ Changes in body fat can happen in people who take HIV-1 medicines. The exact cause and long-term health effects of these changes are not known. ○ Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. These are not all of the possible side effects of PREZCOBIX.™ For more information, ask your healthcare provider. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. 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 accompanying full Product Information for more details. Janssen Therapeutics, Division of Janssen Products, LP © Janssen Therapeutics, Division of Janssen Products, LP 2015 01/15 008417-140113
• PREZCOBIX™ is a prescription HIV-1 (Human Immunodeficiency Virus 1) medicine used with other antiretroviral medicines to treat HIV-1 infection in adults. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). PREZCOBIX™ contains the prescription medicines PREZISTA® (darunavir) and TYBOST® (cobicistat).
Wisdom inspired by real people
DISCOVER YOUR WISDOM WITHIN
Visit PREZCOBIX.com to hear wisdom inspired by experts and people like you living with HIV. Ask your provider if Once-Daily* PREZCOBIX™ is right for you.
PREZCOBIX.com *PREZCOBIX™ is taken in combination with other HIV medications for the treatment of HIV-1 infection in adults.
IMPORTANT PATIENT INFORMATION PATIENT INFORMATION PREZCOBIX (prez-koe-bix) (darunavir and cobicistat) tablets Please read this information before you start taking PREZCOBIX and each time you get a refill. There may be new information. This information does not take the place of talking with your healthcare provider about your medical condition or treatment. What is the most important information I should know about PREZCOBIX? • PREZCOBIX may cause liver problems. Some people taking PREZCOBIX may develop liver problems which may be lifethreatening. Your healthcare provider should do blood tests before and during your treatment with PREZCOBIX. If you have chronic hepatitis B or C infection, your healthcare provider should check your blood tests more often because you have an increased chance of developing liver problems. Tell your healthcare provider if you have any of the below signs and symptoms of liver problems. • dark (tea colored) urine • yellowing of your skin or whites of your eyes • pale colored stools (bowel movements) • nausea • vomiting • pain or tenderness on your right side below your ribs • loss of appetite • PREZCOBIX may cause severe or life-threatening skin reactions or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. Call your healthcare provider right away if you develop a rash. Stop taking PREZCOBIX and call your healthcare provider right away if you develop any skin changes with symptoms below: • fever • tiredness • muscle or joint pain • blisters or skin lesions • mouth sores or ulcers • red or inflamed eyes, like “pink eye” (conjunctivitis) • PREZCOBIX when taken with certain other medicines can cause new or worse kidney problems, including kidney failure. Your healthcare provider should check your kidneys before you start and while you are taking PREZCOBIX. See “What are the possible side effects of PREZCOBIX?” for more information about side effects. What is PREZCOBIX? PREZCOBIX is a prescription HIV-1 (Human Immunodeficiency Virus 1) medicine used with other antiretroviral medicines to treat HIV-1 infection in adults. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). PREZCOBIX contains the prescription medicines PREZISTA (darunavir) and TYBOST (cobicistat). It is not known if PREZCOBIX is safe and effective in children under 18 years of age. When used with other antiretroviral medicines to treat HIV-1 infection, PREZCOBIX may help: • reduce the amount of HIV-1 in your blood. This is called “viral load”.
• i ncrease the number of CD4+ (T) cells in your blood that help fight off other infections. Reducing the amount of HIV-1 and increasing the CD4+ (T) cells in your blood may help improve your immune system. This may reduce your risk of death or getting infections that can happen when your immune system is weak (opportunistic infections). PREZCOBIX does not cure HIV-1 infection or AIDS. You must keep taking HIV-1 medicines to control HIV-1 infection and decrease HIV-related illnesses. Avoid doing things that can spread HIV-1 infection to others. • Do not share or re-use needles or other injection equipment. • Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. • Do not have any kind of sex without protection. Always practice safe sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. Ask your healthcare provider if you have any questions on how to prevent passing HIV to other people. Who should not take PREZCOBIX? Do not take PREZCOBIX with any of the following medicines: • alfuzosin (Uroxatral®) • cisapride (Propulside®, Propulsid® Quicksolv) • colchicine (Colcrys®, Mitigare®), if you have liver or kidney problems • dronedarone (Multaq®) • ergot-containing medicines: • dihydroergotamine (D.H.E. 45®, Embolex®, Migranal®) • ergotamine tartrate (Cafergot®, Ergomar®, Ergostat®, Medihaler®, Migergot®, Wigraine®, Wigrettes®) • methylergonovine (Methergine®) • lovastatin or a product that contains lovastatin (Altoprev®, Advicor®, Mevacor®) • lurasidone (Latuda®) • midazolam (Versed®), when taken by mouth • pimozide (Orap®) • ranolazine (Ranexa®) • rifampin (Rifadin®, Rifater®, Rifamate®, Rimactane®) • sildenafil (Revatio®), when used for the treatment of pulmonary arterial hypertension (PAH) • simvastatin or a product that contains simvastatin (Simcor®, Vytorin®, Zocor®) • St. John’s Wort (Hypericum perforatum), or a product that contains St. John’s Wort • triazolam (Halcion®) Serious problems can happen if you take any of these medicines with PREZCOBIX. What should I tell my healthcare provider before taking PREZCOBIX? Before taking PREZCOBIX, tell your healthcare provider if you: • have liver problems, including hepatitis B or hepatitis C • have kidney problems • are allergic to sulfa (sulfonamide) • have diabetes • have hemophilia • have any other medical condition
IMPORTANT PATIENT INFORMATION • a re pregnant or plan to become pregnant. It is not known if PREZCOBIX will harm your unborn baby. Tell your healthcare provider if you become pregnant while taking PREZCOBIX. • Pregnancy Registry: There is a pregnancy registry for women who take antiretroviral medicines during pregnancy. The purpose of the 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. • are breastfeeding or plan to breastfeed. Do not breastfeed if you take PREZCOBIX. • You should not breastfeed if you have HIV-1 because of the risk of passing HIV to your baby. • It is not known if PREZCOBIX can pass into your breast milk. • Talk to your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with PREZCOBIX. Keep a list of your medicines to show your healthcare provider and pharmacist. • You can ask your healthcare provider or pharmacist for a list of medicines that interact with PREZCOBIX. • Do not start taking a new medicine without telling your healthcare provider. Your healthcare provider can tell you if it is safe to take PREZCOBIX with other medicines. How should I take PREZCOBIX? • Take PREZCOBIX exactly as your healthcare provider tells you. • Do not change your dose or stop taking PREZCOBIX without talking to your healthcare provider. • Take PREZCOBIX 1 time a day with food. • If you miss a dose of PREZCOBIX by less than 12 hours, take your missed dose of PREZCOBIX right away. Then take your next dose of PREZCOBIX at your regularly scheduled time. • If you miss a dose of PREZCOBIX by more than 12 hours, wait and then take the next dose of PREZCOBIX at your regularly scheduled time. • If a dose of PREZCOBIX is skipped, do not double the next dose. Do not take more or less than your prescribed dose of PREZCOBIX at any one time. • If you take too much PREZCOBIX, call your healthcare provider or go to the nearest hospital emergency room right away. What are the possible side effects of PREZCOBIX? PREZCOBIX may cause serious side effects including: • See “What is the most important information I should know about PREZCOBIX?” • Diabetes and high blood sugar (hyperglycemia). Some people who take protease inhibitors including PREZCOBIX can get high blood sugar, develop diabetes, or your diabetes can get worse. Tell your healthcare provider if you notice an increase in thirst or urinate often while taking PREZCOBIX. • Changes in body fat can happen in people who take HIV-1 medications. The changes may include an 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 new symptoms after starting your HIV-1 medicine. • Increased bleeding for hemophiliacs. Some people with hemophilia have increased bleeding with protease inhibitors including PREZCOBIX. The most common side effects of darunavir, one of the medicines in PREZCOBIX, include: • diarrhea • nausea • rash • headache • stomach area (abdominal) pain • vomiting Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of PREZCOBIX. For more information, ask your health care provider. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. How should I store PREZCOBIX? • Store PREZCOBIX tablets at room temperature between 68°F to 77°F (20°C to 25°C). Keep PREZCOBIX and all medicines out of reach of children. General information about PREZCOBIX Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use PREZCOBIX for a condition for which it was not prescribed. Do not give PREZCOBIX to other people, even if they have the same symptoms that you have. It may harm them. If you would like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about PREZCOBIX that is written for health professionals. For more information call 1-800-526-7736. What are the ingredients in PREZCOBIX? Active ingredients: darunavir and cobicistat Inactive ingredients: colloidal silicon dioxide, crospovidone, hypromellose, magnesium stearate, and silicified microcrystalline cellulose. The tablets are film-coated with a coating material containing iron oxide black, iron oxide red, polyethylene glycol, polyvinyl alcohol (partially hydrolyzed), talc, and titanium dioxide. Manufactured by: Janssen Ortho LLC, Gurabo, PR 00778 Manufactured for: Janssen Therapeutics, Division of Janssen Products, LP, Titusville NJ 08560 Issued: January 2015 © Janssen Pharmaceuticals, Inc. 2015 027415-150108
compassionat Artist Linda Stein Talks to Lester Strong about Gender, AIDS, and Self-Empowerment
ainting, drawing, assemblage and construction, collage, sculpture, jewelry, digital prints, even calligraphy—the art of New York City-based Linda Stein encompasses many genres and styles. She is also editor of the online women’s art magazine On the Issues (OTI). As a feminist, her work has long been concerned with gender, power, and fragility. As a compassionate individual, it has long been concerned with healing and empowerment. And its scope is wide enough to encompass those stricken with AIDS.
Much of this focus was the result of 9/11. Stein’s art studio is located in the Tribeca section of lower Manhattan, within earshot of the jets as they exploded hitting the Twin Towers. Not only was she evacuated as the buildings went up in flames, then collapsed, but she witnessed the collapse herself, and in the early stages of the crisis saw people falling out of the World Trade Center windows. “It was a horrible day, traumatic to go through,” she said when interviewed for this article. “I was unable to work much on my art for a long while, and when I returned to it I found I was no longer doing abstraction, but
figurative work. Figuration has never been absent from my work since.” Stein’s art after 9/11 also incorporates a polemical, political element. Asked where the intersection point for her lies between art and politics, she replied bluntly, “I can’t even separate them now. We all have to be political these days. Right?” Political as her art may be, but it can hardly be called propaganda. These days it is largely (but not exclusively) sculpture. At once tactile and visual, it appeals both to touch and the eye. It is serious but also humorous. Referencing historical iconography like medieval knights and the androgynous Asian religious figure Kannon/Kuan-yin, along with contemporary pop culture icons like Wonder Woman and the Japanese Anime heroine Princess Mononoke, it has a look and feel both antique and modern. Among the issues it addresses: bullying, sexual harassment, sexual and physical abuse, and violence in general. (“As a life-long pacifist, I abhor violence,” she said during the interview.) Each piece embodies a complexity that defies any simplistic attempt to label its meaning or message. The first series that emerged in Stein’s post9/11 figurative phase she called Knights. In an article she wrote for the May 2008 issue of OTI titled “The Art Perspective,” she wrote that the attack on the World Trade Towers left her feeling “powerless and unprotected that sunny day in September 2001….” She was searching for a way to feel protected, a way to unlock her own interior powers of self-protection, and the figure of the knight fulfilled that need. It may seem strange that what emerged from the hands of a pacifist were sculptural figures usually identified with warlike behavior. It bothered Stein too, until she realized her
Top: Knight of Winged Words 524, 2005, wood. metal, stone, 46 inches by 14 inches by 14 inches Opposite page: Silver Knight 666 (body armor), 2009, wood, metal, acrylicized paper, leather, vinyl, fiber, archival inks, velcro. Gloria Steinem in armor, with Linda Stein. Photo taken by Stein Studios, March 20, 2015
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feelings, thoughts, and attitudes. Asked where AIDS fits into this picture, she said: “In my art, I place the female front and center for a social idealism that aims to transform violence, destruction, and fragility into strength for anyone who finds themselves bullied, harassed, or abused. That certainly includes those living with AIDS, who face physical illnesses and discrimination of all kinds on a daily basis.” Stein is interested in empowering everyone stricken with AIDS, but her central concern is disenfranchised women. In her May 2008 OTI article, she wrote: “As a sculptor, I respond visually to today’s feminization of AIDS. I seek in my work to empower the woman who cannot say ‘no’ to her husband or lover who demands sex without a condom. What does it take to say ‘no’? A woman who feels armed and armored like this sculpture?” (Knight of Winged Words 524) She went on to ask: “Who can this vulnerable woman look to as a role model for the strength and confidence it takes to battle the cultural or personal pull to submit?” Stein looks to her Knights, of course, which, composed of stone, metal, and
leather, certainly convey strength and protection. But it is here that the other heroic female and androgynous figures she has incorporated into her art come into play: Wonder Woman, Princess Mononoke, and Kannon/Kuan-yin. To an American, Wonder Woman needs no introduction. Nearly everyone knows something about this warrior princess of the Amazons willing to help anyone in need, either through comic books or the 1970s’ TV series in which she was portrayed by Lynda Carter. Princess Mononoke is the name of a 1997 Japanese Anime film in which the lead female character was instrumental in protecting the environment from an assortment of evil-doers. And Kannon/Kuan-yin is the Buddhist Goddess of Compassion and great protector of those in need, sometimes considered male, sometimes identified with Mary, the mother of Christ. Stein uses all three in her art as messengers of strength, endurance, and resourcefulness in meeting head-on the challenging situations people face knights are not aggressors, but protectors, that can leave one symbols of strength whose aim is to help feeling powerless, those who feel unable to help themselves. intimidated, unMoreover, they are obviously female protected. And to knights, suggestive of strengths traditionhelp viewers interally associated with women—nurturing, nalize her message endurance, resourcefulness. more easily, she It may also seem strange to speak of has gone a step sculptures as actively aimed at protecting further, producing anyone when they are made of stone, sculpture that is metal, wood, cloth, and leather, inanimate not just viewable, and unable by themselves to actively but wearable. confront anyone or anything. But as “Body-swapping Stein wrote in her May 2008 OTI article, armor,” as it has “My sculpture series, Knights, responds been called, allows to a changing world by communicating viewers of her art images of strength, protection, healing….” to experience for (Knight of Healing 615). The key word themselves a sense here is “communicating.” Viewers bring of what it means to her art their personal expectations, to feel protected by needs, hopes, and fears, and one’s own abilities and Stein wants her sculptures strengths, as do the Top: Knight of Tomorrow 574, 2006, bronze, 45 inches by 17 to speak back. She imbues iconic figures she referinches by 7 inches them with certain traits and ences in her art. In her Right: Knight of Winged Words 524, 2005, wood. metal, stone, associations viewers can pick May 2008 OTI article, 46 inches by 14 inches by 14 inches up and absorb into their own she described the experi-
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A&U Gallery ence of putting on the wearable armor she has created as follows: It’s like “trying on new clothes, if you will, refining additional layers of [one’s] being, and creating a new figurative manifestation of [oneself ]—fearless and bold.” (Silver Knight 666) Stein’s body-swapping armor has a feminine look to it, wide at the hips and curvy near the top suggesting breasts. So putting it over one’s own body also involves the notion of gender swapping. Women try on protective gear traditionally associated with male warriors, while men put on a type of armor replete with feminine associations. Women can gain a notion of what it means to feel like a powerful man—traditionally depicted as protectors of women—while men can gain a sense of the vulnerability women can feel in a lop-sided world of male privilege. Clockwise from top: Wonder Woman, Kannon, and Princess Mononoke—all inspirations for Linda Stein’s work on self-empowerment
Stein’s point here is that everyone alive contends with gender-specific expectations and limitations, and she wants her art to help people break through those often rigid mind-sets so they can become aware of and actualize a wider array of abilities, sensibilities, and emotional resources within themselves than their backgrounds may have allowed them to be familiar with. This also intersects with Stein’s concerns about AIDS. Returning once again to her May 2008 OTI article, she wrote: “AIDS, from my vantage point as an artist, is addressed by scrambling expectations of masculinity/femininity, power/vulnerability, warrior/peacemaker. My sculpture, in its idealism, can give one with AIDS, or at any stage of fragility, an opportunity to internalize a new model for agency and restoration.” Stein of course recognizes the medJUNE 2015 • A&U
ical and physiological aspects of AIDS— the importance of access to good medical care and affordable medicines, the need for good nutrition—but the focus in her art is the inner, psychological resources needed to cope with the disease as it affects one’s life. To reach a wider audience, her exhibition “The Fluidity of Gender” has been traveling to different venues throughout the country for several years now, accompanied by Stein herself, who interacts with viewers of the show through lectures and question-and-answer periods. During the interview she put it this way: “I address an audience and say to them: ‘I’m a Jew. I’m a woman. I’m a feminist. That’s me. What’s authentic for you? How do you define yourself? What do you want or need to be? How are you going to stand up for yourself? How are you going to stand up for others? Politically? Socially? Medically?’ These are questions that are adaptable to anyone’s situation, and certainly to anyone living with or concerned about AIDS or being infected with HIV.” Linda Stein is seeking to empower people, and her message is clear: Being locked into social roles—or medical conditions—over which we feel we have no control is not liberating. It’s confining, stifling, perhaps life-threatening. Through her art, she is looking for ways to help people access the inner resources needed to solve seemingly insoluble problems. Indeed, we all need to learn how to access those resources. It’s the only way one can confront any problem that feels overwhelming, AIDS included, and successfully take charge of one’s life. Linda Stein is represented by Flomenhaft Gallery in the Chelsea section of Manhattan. For more information about her art go on-line to Flomenhaftgallery.com, or to Lindastein. com; those who live in or near Portland, Oregon, can also visit her award-winning bronze sculpture Knight of Tomorrow 574, on view as the central installation for the Walk of the Heroines at Portland State University. Lester Strong interviewed artist Richard Vechi for the March issue.
DIRECT ACTION Peter Staley Talks AIDS, Activism, and How to Get Your Point Across by Lester Strong
Photographed Exclusively for A&U by Sean Black
or anyone involved with or concerned about AIDS activism these days, Peter Staley should be a household name. Not only was he involved in ACT UP (AIDS Coalition to Unleash Power) almost from its beginnings in the 1980s, but he’s prominently on view in David France’s award-winning, Academy Award-nominated 2012 documentary How to Survive a Plague.
The world for those living with HIV/AIDS today is very different than it was in the early years of the epidemic. The disease is no longer considered just a “gay plague.” It has spread globally. There are now effective medicines to halt its ravages on the immune system, and there is a large research effort underway to discover new medicines, including vaccines aimed at halting its spread to new populations or curing those already infected. The prognosis for the disease even today is not problem-free. Among the current issues: How can the bad side effects of the AIDS meds be countered? How can we ensure that everyone
living with HIV/AIDS receives the medications they need? How can we set up effective educational campaigns aimed at stopping the spread of the disease? Nevertheless, we are in a different place, largely because of the pioneering efforts by ACT UP, and in a recent interview, Peter Staley provided valuable insights into some of the effective strategies used by that organization to reach its goals. First diagnosed with AIDS-Related Complex (ARC) in 1985, Staley’s life was understandably turned upside down. A bond trader on Wall Street by day, he lived a closeted gay life in a period A&U • JUNE 2015
sit-in photo by Clay Walker © 2013; arrest photo by William Lucas Walker
when openly gay men were not exactly welcome in the straight-laced corporate world. One day going to work, he was handed an ACT UP flier, and decided to attend the next meeting. Soon he was trading bonds by day and chairing ACT UP’s fundraising efforts in his free time. The illness forced him to come out to his family—whom he found very supportive—and eventually at work. In 1988, he left bond trading to go on disability leave, and became a full-time AIDS activist. Staley participated in some of the ground-breaking ACT UP demonstrations, among them: closing down the offices of the U.S. Food and Drug Administration (FDA) in Rockville, Maryland (1988); blocking traffic on Wall Street in New York (1988); protesting inside the New York Stock Exchange (1989); invading the Burroughs Wellcome offices in Research Triangle, North Carolina (1989); storming the Fifth International AIDS Conference in Montreal, Quebec, Canada (1989; at the time, a members-only event open just to doctors and HIV/AIDS researchers); draping the home of racist, homophobic, anti-AIDS-funding North Carolina U.S. Senator Jesse Helms in Arlington, Virginia, with in a large nylon replica of a condom carrying the printed message “A condom to stop unsafe politics—Helms is deadlier than a virus” (1991). Less visible to the media, but extremely important in terms of AIDS activism, Staley was a founder of ACT UP’s Treatment Action Guerrillas, later known as the Treatment Action Group, or TAG. It focused exclusively on the pursuit of AIDS treatment solutions, and was willing to negotiate with groups ACT UP targeted for demonstrations like government health agencies and pharmaceutical companies. After some rancorous arguments between TAG members and others in ACT UP who distrusted what has been called “insider activism,” there was a split in the larger organization, and TAG went its own way. In 1991, Staley was appointed to the board of amfAR (the Foundation for AIDS Research), where he served until resigning in 2004. In 1999 he founded aidsmeds. com, still a functioning website dedicated to helping educate those living with AIDS about the disease and the medicines available so they can make informed decisions about their treatment. And in 2004 Staley, a former crystal meth addict himself, funded and launched an ad campaign of printed posters on phone booths in the heavily gay Chelsea area of Manhattan aimed at gay and bisexual men warning JUNE 2015 • A&U
Staley participating in ACT UP actions in the late 1980s
about the dangers of using the drug. Clearly in terms of activism, and especially AIDS activism, this is a person who knows what he’s talking about. During the interview, held in Staley’s Brooklyn apartment, and asked what part he thinks activism plays in our society, he answered, “In our country historically it’s been a big driver of change. Whenever there’s a great injustice and people aren’t paying attention, whenever politicians aren’t doing their job to address the problem, it’s the role of any vibrant civil society to actively speak out. People live in their own worlds and sometimes need to be shaken out of their complacency. They need to be pushed out of their comfort zones.” Turning specifically to AIDS activism, he continued: “We had a viral epidemic that was allowed to take hold and start spreading rapidly because of who the virus was initially targeting. America back then was a very homophobic country. Americans didn’t want to think about homosexuality, let alone discuss it. Then homosexual men started dying in ever-increasing numbers. The problem for those of us concerned about AIDS was how to tell the story in a way that nobody could ignore. We didn’t have to convince them
to be comfortable with homosexuality. We just had to make them uncomfortable with what the country was doing, which was letting hundreds, then thousands, then many, many thousands of its own citizens die because of neglect. “We had to tap into a very American trait. As a society we have a great capacity to not look and not see. But when we’re finally brought face to face with a problem or injustice, we start to make something happen. Think of civil rights and the TV coverage it began to receive in the late 1950s. America couldn’t turn away from those images, and that’s when things started to change.” According to Staley, ACT UP drew from earlier activist movements in America: civil rights, women’s liberation, prochoice, and of course gay liberation. “We were probably on the radical end of that activism, because of the time constraints we felt we were under,” he said. “We all felt we had very, very little time to save our own lives and those of our friends. We had to push that much harder.” Staley pinpoints the October 1988 demonstration by activists that closed down the FDA headquarters as the start of a real national awareness about AIDS. “It
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photo by Sean Black
was the first time Americans saw homosaid, “Pretty much all social movements were a lot of strong emotions driving evsexuals on TV in mass numbers. They begin to have infighting within a few years. eryone. There were many people, like me, were angry, they were determined, they We had a good five years before the major who had no prior movement experience. were demanding to be heard, they were splintering happened in ACT UP. I was We just couldn’t handle our differences. I taking care of their own. They had this part of what you might call the ‘drugsregret the split. I think there’s a chance it beautiful story of heroism in the face of into-body’ treatment activists. We called could have been avoided.” neglect, with the media there in full force ourselves the Treatment and Data CommitAsked how he thought it could have reporting on it all. And Americans began tee, and wanted to combine street activism been avoided, Staley said, “There are some to feel ashamed of the situation they were with an inside game where we negotiated pretty common-sense practices to help an being forced to confront.” organization deal with Staley bluntly labels these problems. TAG itself the ACT UP tactics experienced infighting “guilt-tripping” the eventually. We brought American public and in a paid facilitator and their political represendid some full staff/board tatives into responding weekend retreats where we to the AIDS crisis in talked through all our isa responsible, caring sues. If all goes well—and way. A more charitable some of our retreats went description might be really, really well—you can that ACT UP was able to get another six months to rouse the conscience of a year of productivity with the American people. But everybody on the same there was more to it than page and excited about the using loud demonstrawork before any infighting tions or invading buildstarts again and you need ings and closing down another retreat. It’s a stanoffices as the means of dard conflict resolution garnering media attentechnique used by corpotion. As AIDS started to rations and not-for-profits. take its large toll of sick Social activist movements and dying individuals, don’t use it, but there’s no it forced many, many, reason they can’t. many men who had kept “In ACT UP, we the gay part of their lives finally reached a point secret from their families where whole groups and work colleagues weren’t talking to each into coming out, as other, just anonymously already mentioned in bad-mouthing those regard to Staley. And like they disagreed with. We Staley, they often found were so angry. We had the support they were so many committees—if seeking, which enlarged only we’d had a Movethe number of people acment Committee whose tively interested in seeing sole job was to self-reaction on the part of the flect on how the organigovernment and medical zation was doing from a establishment. There was mental health perspecalso invaluable support tive! If you can’t afford a The 20th Annual Steve Chase Humanitarian Awards honored How to Survive from the lesbian compaid facilitator, that’s what a Plague’s David France (director), Joy Tomchin (executive producer), and munity, many of whom I’d advise other activist Staley, one of the documentary’s central subjects. joined ACT UP and/or organizations to do.” were part of the primary The split within ACT support network for their gay male friends with those in the medical establishment UP might have been avoided, but of who were sick from the disease. It didn’t we were seeking to influence. Others course it wasn’t. By the early 1990s, as take long. “The NIH [National Institutes disagreed. The Treatment and Data ComStaley noted, TAG was on its own. “The of Health] budget started to soar almost mittee later became the Treatment Action split allowed TAG to continue playing immediately,” Staley commented. Guerrillas, and eventually the Treatment the inside game as strong as ever,” said As mentioned earlier, ACT UP, Action Group, or TAG, which in the early Staley during the interview. “We took effective as it was in steering the national 1990s split off from ACT UP. off like a rocket, and hit the ground debate over AIDS in a good direction, ran “On looking back, I do think, underrunning. We were intimately involved into internal problems. Asked to comment lying everything, what really fed the split in pushing the government and pharon that aspect of the movement, Staley was immaturity. We were young, and there mas to all get on the same page, and I
think the results showed when 1996 rolled around and protease inhibitors were introduced.” With effective medicines on the market to halt the ravages of AIDS, and Staley taking them, 1996 also marked a watershed for him personally. “After I realized I wasn’t going to die right away and had a future life ahead of me, I had to decide what to do next career-wise. It took a long time. I had always dreamed of doing something entrepreneurial, but that had gotten pushed aside by AIDS activism. I worked with a good career counselor, who helped me realize that to enjoy my work I had to feel like I was making a difference in the world. The Internet was fairly new, and there were a couple of websites with information about AIDS on them. But I thought they had weaknesses. “That’s how aidsmeds.com came about. I decided to focus on the very complex issues of AIDS treatments, and boil them all down for people living with or newly infected by HIV in a way that wouldn’t be intimidating. People with access to computers could self-educate themselves about treatment alternatives and become self-empowered. They could go into their doctors’ offices and be partners in deciding how to treat their health issues instead of just feeling like a cog in the medical machine or enslaved by HIV and what the virus was doing to them. I know I always found it very empowering to know how the virus did what it did and what my treatment options were. Anyway, the website took off and became very popular.” These days Staley’s AIDS activism has veered toward new developments in the AIDS prevention sector. “I’ve become a big PrEP [pre-exposure prophylaxis]
been shown in clinical trials to have a stunning success rate in preventing HIV infection, at least among men— between ninety-nine percent and 100 percent in some of the trials I’ve read about. “If PrEP had come out in the 1980s, there’d have been no debate. We’d have been burning down government buildings to get it released. Today, those advocating PrEP have been disparaged as ‘Truvada whores’ [Truvada is a main component of PrEP] by some opposing its use, as though despite its proven efficacy it’s not
We were so angry. We had so many committees—if only we’d had a
Movement Committee whose sole job was to self-reflect on how the organization was doing from a mental health perspective!
advocate,” he said. “Rarely has the science of AIDS been this definitive. With PrEP, we have a drug that has low or no toxicity for HIV-negative people. Taken as prescribed every day by the uninfected, it’s JUNE 2015 • A&U
a morally acceptable prevention method. I myself consider proponents of PrEP the new AIDS activists, and I consider them heroes. However, from my perspective as a gay man living with AIDS, I think even the
criticisms are valuable because they show that gay men are talking about this epidemic again in a way they haven’t been for many years now. We need that discussion.” As a long-term activist and survivor of the disease, Peter Staley’s views even in today’s changed world of AIDS count for a lot. And his final words on the subject during this interview? “It’s a period of optimism,” he said. “In it’s own way incredibly exciting. I think we’re going to be around when they find a cure.” Well, they’ve found a cure for hepatitis C. A cure for AIDS? Exciting indeed. Follow Peter Staley on Facebook at www.facebook.com/peterstaley; and Twitter @peterstaley. A&U would like to thank the Lesbian, Gay, Bisexual and Transgender Community Center in New York City for generously allowing us to conduct this photo shoot on its premises. Lester Strong is Special Projects Editor of A&U.
What’s the Matter With
Indiana? CDC sounds alarm about HIV and Hep C spike by Larry Buhl
t a news briefing on April 24, the Centers for Disease Control and Prevention said that urgent action was needed to control the outbreak of HIV and hepatitis C in Indiana’s Scott County, a sparsely populated area in the hilly southeast corner of the state. At the conference State Health Commissioner Dr. Jerome Adams indicated that other cities and towns in rural Indiana and in other states were vulnerable and that the outbreak in Scott County was the “tip of an iceberg” in the United States. The CDC’s statistics for the outbreak are shocking: • As of April 24, 135 people in a county of about 24,000 tested positive for HIV since January 1, with the number of new infections increasing daily. For perspective, the entire state sees about 500 new HIV cases a year. • Nearly nine in ten people who tested positive for HIV in the county have also been diagnosed with the hepatitis C virus (HCV).
• There was a 150 percent increase in reports of hepatitis C between 2010 and 2013, the majority attributable to injecting drug use. A week after the conference the Indiana legislature sent Governor Mike Pence a bill that would give communities flexibility to implement needle-exchange programs if they experience epidemics similar to Scott County’s. Community leaders would have to get approval from the state health commissioner to launch a needle exchange. Pence, who continues to be opposed to needle exchanges as permanent public policy, said he would sign the legislation into law. That the bill passed by wide margins in the conservative state Senate and House shows state lawmakers in both parties are very concerned about new outbreaks like the one in Scott County. They have reason for concern, health advocates say. The Scott County crisis marks a new chapter in HIV transmission. It is the first
documented HIV outbreak in the U.S. associated with the injection of a prescription painkiller. In the U.S., HIV rates associated with injection drug use declined substantially over the last twenty years. But HCV infections, which had also been declining, are now rising across the country. The CDC estimates that HCV infection rates rose seventy-five percent between 2010 and 2012, as more opioid users began injecting the drugs. For several years health advocates warn that if hepatitis C is spreading among people who inject drugs, HIV won’t be far behind. And if Scott County can be considered a canary in the coal mine, it’s very likely that HIV rates from IV drug use will be rising elsewhere. But it won’t necessarily be the inner cities that lead the way. This time it will be America’s heartland. A perfect storm Looking back, the combination of poverty and unemployment, easily available prescription painkillers, and cutbacks in social services created a perfect storm that A&U • JUNE 2015
should have been easy to predict. The picture on the ground in Scott County was ominous long before the spike in HIV and HCV. It has long suffered from high unemployment (8.9 percent now), and almost twenty percent of the proportion of the population living in poverty. Addiction specialists say that, as with impoverished inner cities, idleness, despair and unemployment are key indicators of who is susceptible to abusing heroin and other opioids. Dr. Joan Duwve, the chief medical consultant for Indiana’s state health department, said prescription drug abuse has been rising in Scott County for more than a decade. The drug at the heart of the Scott County epidemic is Opana, also known as Oxymorphone, which became the drug of choice for a heroin-like high after Oxycontin was changed in 2010 to make it more difficult to snort or inject. Per milligram, Opana is more potent than Oxycontin, and users who are not familiar with its effects are vulnerable to overdosing. Because of this, in addition to allowing needle exchange, Governor Pence recently signed a bill making it easier to access the overdose-intervention drug Narcan. Not only is Opana more potent, the way it’s used—communally—helped HIV and HCV speed through social networks. “There are children and parents and grandchildren who use in the same house and are injecting drugs together as sort of a community activity,” Duwve said at the April 24 conference. People are paying $150 for 40 ml of the drug, according to health workers responding to the crisis, and users inject the drug several times a day. With the expense—and this is one of the poorest counties in the state—users pool their resources to buy it. Then they split the doses and share their syringes. The third leg of the outbreak stool is the underfunding of health care infrastructure in the state. According to data from
Trust for America’s Health, Indiana is now dead last in the nation in per capita investment dollars it pulls down from the CDC and forty-seventh of all states in per capita dollars from HERSA. That means limited health facilities for the poor in rural areas. HIV funding cannot cover every county for testing. Right now there are thirty-seven HIV test sites for ninety-two counties in the state, and the primary care system does not routinely screen for HIV and other STDs. Abortion politics & Planned Parenthood Until 2013, the sole provider of HIV and STD testing and services in Scott County was a Planned Parenthood clinic—a clinic that did not offer abortion services. That clinic and four other
Planned Parenthood facilities in Indiana, all of which provided HIV testing and information, closed down since 2011, mainly due to across-the-board funding cuts to the state’s public health infrastructure, and partly because of politics. Although Governor Mike Pence, a Republican, wasn’t directly responsible for the Planned Parenthood closures—he was in the U.S. House of Representatives in 2011, when the state cuts went through— that year he did push an amendment in the House to defund the organization nationwide. And Republicans in the Indiana state house, where they’ve held significant majorities for years, have been generally hostile to abortion rights. The funds Planned Parenthood received from all government sources, including family planning and grants for HIV and STD services, decreased forty-two percent between 2005 and 2011. Patti Stauffer, President and Chief Executive of Planned Parenthood of Indiana and Kentucky, believes conservative lawmakers’ hostility to abortion and the organization have led to unintended and adverse consequences for public health. continued on page 54
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MAT ER IALS of SU R V I VA L Photographer Grahame Perry blends portraiture and pop art to convey the weight and exuberance of living long-term with HIV by Brent Calderwood
cuss his work, and in the process gained new insights, both artistic and psychological, about what it has meant to be HIV-positive for the long haul, and what it means today. Brent Calderwood: One of your most recognizable pieces is Am I Blue?, which was part of the Kinsey Institute Art Show last year in Bloomington, Indiana, and actually became the name for the series you created prior to “Materials for Survival.” Can you
tell me more about that image? Grahame Perry: Am I Blue? has two main components—my self-portrait and a series of out-of-focus pill bottles. The experience of HIV, represented by the many bottles, has affected how life is viewed, especially for those of us who have been HIV-positive for decades. When I think about it and when I’ve discussed this with other long-term survivors, it can be overwhelming how much emotional and physical energy it has taken. I have thought of myself as a photographer, but that series pushed me into areas where “artist” seems more applicable. Prior to your series “Am I Blue?” and now “Materials of Survival,” did HIV/AIDS appear in your work or inform your process? I came to photography in the last five years…it was a surprise to be taken over by this passion. Within a year of starting to make photographs, I made the first image of my series [“Materials of Survival”]. That piece, Obsession, is very graphic and uses pills and text. Slowly I began to explore what other images I could make to express my experiences as a long-term survivor. [But] the bulk of my photography has not focused on HIV—I was exploring the urban environment of San Francisco, which has been my home for many years.
Big Pharm, 2013, archival pigment print in edition of 25, 12 by 30 inches
Looking at your individual and group shows, your work has moved from traditional photography—night photography of San Francisco, for instance—to work that could be described as pop art, including using techniques borrowed from advertising and graphic design. Is that a fair description? Well, I started out with photography but am drawn to processes that push the boundaries of what I can achieve in photography. There are some images which are film-based, some digital. Sometimes I’ll use iPhone images to form a key element, and other times I’ll use appropriated images and mix them with my own images. I do use digital software to assemble and combine photographic, graphic, and text elements. The ability to be able to conA&U • JUNE 2015
all images © Grahame Perry Photography 2013–2015
n honor of National HIV/AIDS LongTerm Survivor Day on June 5, the Bay Area gallery SF Camerawork is featuring an exhibition titled “Long-Term Survivor Project,” showcasing the work of London-born photographer Grahame Perry, along with New York artists Hunter Reynolds and Frank Yamrus (June 4 through July 15). In contrast to similar gallery and museum shows that have told stories mainly of loss, “Long-Term Survivor Project” explores, according to SF Camerawork, “the current state of health, diagnosis, and treatment of HIV” through the stories of those living in the present while still making meaning of the past. Among the most compelling images from the show are those from Perry’s series “Materials of Survival,” which seems to synthesize a lifetime’s worth of experience—not only the explicit experience of living with HIV since the mid-1980s, but also his training in representational photography (he received an A.S. in Photography from City College of San Francisco in 2013), digital imaging (he spent thirty years working in computer science prior to his career in the arts), and even psychology (he holds a B.A. in that subject from the University of California, Berkeley). Drawing on this diverse background, the photomontages in “Materials of Survival” feature pills, vials, prescription labels, and other objects to represent the gravitas, overwhelm, and optimism of living with HIV before and after the advent of antiretroviral cocktails. Ranging from somber cyanotype self-portraits to abstract psychedelic digital collages of medications and medical paraphernalia, Perry’s work is a deft blend of the mournful and the exuberant. This has been a watershed year for Perry. In addition to being featured at SF Camerawork, he has an upcoming solo show of HIV-based work at the San Francisco men’s health/art space Magnet in November, which will include new pieces as well as pieces from “Materials of Survival” and the series that came before that, “Am I Blue?” I recently sat down with Perry to dis-
trol how elements are layered and how you can modify your ideas is very appealing to how I work. Pop art and contemporary art are important to my work. I think that you can see that in my images. I think that there is an inherent critique of capitalist consumerism in some pop art. Holding up simple goods and making them more has been useful in some of my art. Speaking of critiquing consumerism, your piece Big Pharm in particular represents that, but the image could also be seen as a literal representation of the name of your series, “Materials of Survival.” Do you agree? Yes, this could be the poster [for the series] since it’s the simplest depiction of pills. It’s again a pop art usage of objects to show their surface and imply a deeper meaning. They are both basic and beautiful. How many of us see ordinary objects up close so that we can examine them? Large, they become sculptural, beautiful but also sinister. They are important, this once or twice taking of pills every day. Just stopping them—it’s the 1980s again. Obviously there is a critique too in this image: Why are they so very expensive? Many people don’t get access to them. They didn’t just
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become available—many fought for access, many didn’t make it. I hope that this doesn’t get forgotten. HIV-positive people could be seen as consumers of necessity of these pharmaceuticals. We have become customers for life—we need these products to live. Big Pharm addresses this complex relationship. You’ve described yourself as a long-term survivor. Was there a time before that term and self-concept where you didn’t know what being positive meant for your longevity—and how does that show up in your work? I came of age just a few years before AIDS started to appear and so I, like many, assumed that I had been exposed to “it” from the early days. This belief continued as more became know about HIV. The difference between suspecting and knowing was huge, as I try to show in my piece Day One–Everything Changed. For about a decade after testing positive, I struggled with
just surviving and with believing that I had a future. I spent a lot of time acquiring knowledge about the virus, experimental treatments, and drug development. There are several works that deal with some of that—like AIDS Typewriter and Obsession. I think that it wasn’t until I saw that the Day One–Everything Changes, 2014, archival pigment print in edition of 25, 24 by 16 inches
Tx–R.I.P. (from “Am I Blue?” series), 2011, archival pigment print in edition of 25, 24 by 30 inches treatments that I was on were reversing the decline of my immune system, and then the release of the protease inhibitors, that I began to believe in my having a longterm future. The hope of a long life which was ripped away by the HIV diagnosis took a while to slowly return. I feel the need to put some of this journey down in the work I’m creating,
as witnesses to what went on. It’s easy to forget, and I’m not sure that the stories of survival have been told. Some of us who’ve gone through this are still picking through the rubble and trying to make sense of it. There was certainly an attempt to try to get back to normal, after effective treatments came out. I’m not sure if any of us who went through this experience ever had a “normal.” Dealing with AIDS and HIV was our normal. We’ve been living in a parallel world. I do feel like I’m going through this journey through my
art. I think that it’s given me insights and strengths. In terms of insights, it seems like your work is exploring what the idea of being a longterm survivor actually means…. I recently read The AIDS Generation by Perry Halkitis [Oxford University Press, 2013], and it interviews a group of longterm survivors. Halkitis talks about the need to make sense of what we’ve gone through and of showing the significance of one’s life. I think that this is part of the A&U • JUNE 2015
reasons that I make the work. I think that the survivors of this epidemic are heroes, often silent and uncelebrated. We’ve gone through this and are living our lives with a resilience. Being an older, HIV-positive man, there are still many things that are not understood. We are experiencing and we’re also being told that certain things might be happening to our bodies because of the longterm use of drugs, the long-term effects of being positive, or accelerated aging. No one’s really sure. We have become masters at accepting the unknown, being on some sort of vanguard, living on the edges of dilemmas. I think that you need to have a resilience and an inner strength to do that…I think that this is a subtext of my work. I’m constantly aware that all this time that I have had was not given to so many, that it is a gift, I don’t think I can tell you why. I try to understand that I’ll never know, but I respect that I have opportunities many others didn’t have. With that, I’m enjoying living this new reality as an JUNE 2015 • A&U
artist. This seems totally amazing given what I’ve gone through. This gratitude and the memories of others no longer here, it’s what drives me to create these images and in part, tell this story. You’ve mentioned several specific images. One of my favorites combines a somewhat obscured photo of you taking a pill foregrounded by a photo taken in the National AIDS Memorial Grove in San Francisco. The title is Tx–R.I.P. Sorry if I’m showing my ignorance here—what does the title mean? It’s actually best to read it as “Take as Prescribed [pause] Rest in Peace”— which is what the initials mean— because of the unsettling balance which I think goes well with what the visual image communicates. This is a double exposure created in the film camera. It was originally called Eat/Mourn. Eating occurred to me since my partner, who is Taiwanese, uses the verb “eat” rather than “take.” I like that since it’s less distancing and reflects that we are digesting these drugs like we do food, and we use them to survive. The image also reflects the reality that those of us who are still here had access to these drugs and that they worked for us. It’s what separated us from those who didn’t survive. This image deals with the tenuousness of that separation. But there is also the relationship that many of us might feel with those who died—loved ones or compatriots. Thanks for your time, this was a pleasure. Any projects you’re currently working on? I have a really powerful piece on display in June as part of the National Queer Arts
Obsession, 2010, archival pigment print in edition of 25, 20 by 30 inches Festival in San Francisco. It’s called Every AIDS Obituary and uses the thousands of obituaries that appeared in the Bay Area Reporter between 1982 and 2005. It’s quite large and moving. I’m excited to show this photographic montage. It will also be part of the solo show in November. I’ve also just finished assembling a book [Materials of Survival, 2015] of the series to be available at the Camerawork and Magnet shows. The book includes some prose that describes each image. I’ve been pleased how well the prose and the images elevate each other. The book reflects how I’m envisioning the solo show at Magnet that’s coming in November. More about Grahame Perry can be found on his website, www.grahameperryphotography.com. Brent Calderwood is Literary Editor of A&U and author of The God of Longing (Sibling Rivalry Press, 2014). His website is www.brentcalderwood.com.
by by “W
here does depression hurt? Everywhere.” That commercial got it right! Depression does hurt...everywhere, and in more ways than one. But the pain is not often visible, and doesn’t really go away just by throwing pills at it. Caused, at least in part, by society and factors that influence an individual’s life, depression, especially if left untreated, can lead to suicide. And suicide…now, that’s a taboo nobody wants to touch. It encapsulates our worst fears, and feelings—of loss, helplessness, rage, betrayal, and also shame, all topped off by the worst fear of all, if religious, that of burning in hell for eternity. And yet, those contemplating suicide are ready to take their chances. For them, depression does hurt everywhere, in unbearable ways, and the pain is so excruciating that suicide becomes a welcoming, and often only, way out. Statistics have shown that, while more women than men attempt suicide, men are four times more likely to actually commit it. But numbers do not tell the entire story, because, most of the time, they do not include those committing suicide by proxy— for instance, by cop or by HIV. It would be nearly impossible to tell how many individuals contract HIV—and then allow the disease to run its course—as a passive way of taking themselves out. Statistics have also shown that the rates of HIV among African-American and Latino gay men are rising, especially among young
Antoine B. Craigwell of Depressed Black Gay Men talks about the effects of depression and HIV among black gay men in his new film, You Are Not Alone Text & Photos by Alina Oswald
individuals. And, yet, nobody is trying to figure out the reason behind this increase in HIV infections, come up with an effective HIV-prevention strategy beyond using condoms or Truvada as a prophylactic, or take a closer look at the social environment that causes young African-American and Latino gay men or MSM to contract HIV in the first place. Nobody is trying to find out what was going on in these individuals’ lives at the time of their sero-conversion, and, most importantly, how these factors may be related to depression and suicide in these communities. Nobody seems to be talking about this taboo…until now. Depressed Black Gay Men (DBGM) is a new nonprofit organization on a mission to raise awareness about depression and suicide among members of the black gay male community. And one of the tools DBGM uses to fulfill its mission is a new documentary called You Are Not Alone. The film came out of a long process that started almost a decade ago with the idea of a book about depression and suicide among black gay men, which, in turn, led to the foundation of Depressed Black Gay Men. The sixty-five-minute long documentary includes interviews conducted by Antoine B. Craigwell, President and CEO of DBGM, with black gay men, mental health professionals, and religious leaders. The film also includes reenactments written by Stanley Bennett Clay [A&U, September 2006], based on the real-life stories shared during the interviews—about
homophobia, racism, dealing with sexual orientation and identity, sexual abuse, discrimination, stigma, and HIV/AIDS. The reenactments add a visual component, thus enhancing the dramatic effects, while helping to paint a more complete picture of the issues and taboos expressed in the film...hence turning You Are Not Alone into a docudrama. While starting documentation for this project in 2009, Craigwell soon realized that nobody was really interested in publishing a book about depression in black gay men. So, he decided to turn his original book idea into a documentary instead. Some of the men he’d interviewed for the book agreed to appear on camera, for You Are Not Alone. Among them, the late Taylor Siluwé, author of Dancing with the Devil and former features editor of Out IN Jersey Magazine, and Jonathan Lucas, former Executive Director of an LGBT center. Interviews started in January of 2011. After a break for lack of funding, they resumed in May of the following year and were completed a month later, in June. By early October DBGM had a rough cut that Craigwell then screened in front of a panel of mental health professionals—psychiatrists, psychologists, and psychotherapists—and four community-based focus groups. The approval was overwhelming, and You Are Not Alone premiered in November 2012. Since then it has been in several film festivals, and screened around the world, in Canada, Nairobi, Kenya, and at a Caribbean arts festival, and also in A&U • JUNE 2015
the States, most recently this May, at the National Social Worker Conference, in New Orleans. Each time he sees it, Craigwell remembers those who sat in front of him, sharing their stories. “[All these stories] they all affected me differently,” he confesses. “I [was] off camera, when [recording the interviews,] and I was in tears listening to their stories, because I couldn’t believe the pain that [these individuals] were living
with. It was really remarkable hearing these guys speaking of themselves.” The mission of You Are Not Alone is to let individuals who find themselves in situations similar to those portrayed in the film know that they are indeed not alone in their experience. And also, to let them know that there is hope. “I got the name from DJ Baker, one of the interviewees, and it was later repeated by Taylor [Siluwé],” Craigwell explains the ti-
tle of his documentary. “Because,” he adds, “that’s one of the things we [at DBGM] recognize. If you listen to the stories of those guys, [you realize that] very often, many people dealing with depression feel that they’re the only person in the entire world who’s trapped in this. Because of the stigma, discrimination, shame, embarrassment, and humiliation, they’re afraid to talk about it, [and] it starts to eat up at them in many ways, [including] relationships, and jobs.” After a pause, Craigwell adds, as if addressing these particular individuals, “It’s okay for you to talk about this. You are part of something. That’s why the documentary is called You Are Not Alone,” he reiterates. “HIV is a byproduct or a consequence of one of the effects of depression,” Craigwell comments. Research studies have shown that people dealing with depression are less concerned about themselves; therefore, they would be more likely to engage in unsafe sex. “There are people who contract HIV as a form of passive suicide, and there’s research to support it, but this is a conversation that’s not happening,” he explains. Yet, there is light at the end of this tunnel, in the form of psychotherapy. DBGM encourages those dealing with HIV to go see their primary care physician, and ask, among others, two questions: 1. What are the psychological effects of the HIV medications? 2. Can you recommend a therapist or mental health professional for me to see in conjunction with the [regular] HIV [doctor]? DBGM believes that, in order to arrive at a healthy person, an individual needs a comprehensive approach—a combination of holistic and conventional treatment—to dealing with HIV. In that sense, when
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Scenes from You Are Not Alone
talking about mental health, it’s worth considering the brain’s ability to recreate new pathways for regeneration, otherwise known as neuroplasticity. For that reason, seeing a therapist can help rewire the neurology of a person, who, say, is living with depression and HIV. The process is a lengthy one, but it can be done. Add to it the medications that help bring the HIV levels to undetectable, and that person becomes healthy—physically and mentally— with a more positive outlook in life. But while there is hope, there are also obstacles. Payment for mental healthcare, for one, especially in the American environment, is a significant issue. As of January 1, 2014, the Affordable Care Act allows for Medicaid to pay for mental healthcare. On the other hand, Medicaid is so burdensome bureaucratically that many mental health professionals prefer not to even get involved. The challenge is finding enough mental health professionals willing to accept Medicaid and provide treatment to the millions who are on Medicaid and cannot afford to find mental healthcare anywhere else. The other challenge involves finding mental health professionals who are culturally competent to address the needs of their clients, especially when, very often, the African-American community still deals with the effects of the Tuskegee experiment, and doesn’t trust the medical establishment. “When you go to see a therapist, the first fifty-minute consultation is free,” Craigwell says. “It’s really so that the therapist is able to determine if you’re going to keep the appointJUNE 2015 • A&U
ment[s], and [if] you have insurance to pay for [the appointments.] We advise that, when you go to see a therapist, you interview the therapist, asking questions like: “How much of your personal belief system do you incorporate into your therapy? “How comfortable are you dealing with LGBT or black [or HIV-positive] patients. “If that therapist cannot answer these questions or does not come up with some satisfactory answers,
that ultimate action are beyond all they can control,” Craigwell explains. “There is a builtin tension in our society,” he adds. “Because of our individualism, we see the person committing suicide as selfish, as breaking the bonds with their community. But at the same time it is that [very] community that can bring that person to suicide.” Craigwell reminds that it takes a village to raise a child, and that there’s also a flip side to it. “That it takes a village to destroy a child,” he says. “If a village comes together in the upbringing and the nursery of that child, [to] help the child achieve his whole potential, the village can [also] raise that child to the point that that child is destroyed, or destroys himself. “Our individuality as humans is tied inextricably to others,” Craigwell says. “We do not exist in a vacuum. Our entire sense of belonging, identity, our sense of self, comes from our belonging to others— our peers, families….When that is not there, when that is not given, we cease to function, we cease to be. Or our existence becomes very challenging, very difficult to achieve and maintain.”
other “...suicide, by HIV or ilies, means, shutters fam pain.” and causes immense you get up and leave. And you may have to spend time to find another therapist [that best suits your needs].” While DBGM helps bring hope back into the lives of many individuals and help them reach their dreams, the organization has also goals of its own growth. Craigwell still plans to finish, and publish, the book that started it all. You Are Not Alone continues being screened across the country, a starter for that vital conversation that could, ultimately, save lives. Truth is that suicide, by HIV or other means, shutters families, and causes immense pain. The process of bringing someone to the point of suicide is a lengthy, ongoing one. “It is important to understand that the forces that propel [individuals] to
To learn more about Depressed Black Gay Men, visit www.dbgm.org. Find out more about You Are Not Alone at www.yana-thefilm.com. Alina Oswald is Arts Editor of A&U.
Man Up Mondays a new campaign knows you have burning questions
n independent interim review of the Strategic Timing of AntiRetroviral Treatment (START) study findings shows that initializing treatment early improves outcomes for individuals with HIV, according to a May 27, 2015, press release from the National Institutes of Health. START, a major international randomized trial across 215 sites in thirty-five countries, shows that treatment-naive patients have a decreased risk of progressing to serious AIDS-related events or developing other serious non-AIDS-related illnesses if they start a regimen when their CD4 cell counts are 500 cells/mm3 and above rather than when their CD4 cell counts fall below 350, which has been a key time to start treatment if it has been deferred. Although current U.S. guidelines recommend starting treatment even if asymptomatic and no matter what your CD4 cell count is, the START study is the first study to offer concrete and comprehensive proof that early treatment in treatment-naive individuals confers expansive health benefits. Along with the data from previous studies, START also showed individuals on antiretroviral treatment have a lower viral load, and therefore a decreased risk of transmitting the virus to uninfected sexual partners, further bolstering the Treatment as Prevention approach. Treatment and testing access for everyone is essential. But how do we help empower HIV-negative, status-unknown, and HIV-positive individuals to approach sexual health with more forethought than afterthought? One campaign has zeroed in on Mondays. Web search engines seem to be busier on Mondays, at least when it comes to surfing for health-related information about HIV prevention and testing. According to analysis published in the April 21 edition of the journal AIDS Care, researchers at Johns Hopkins Bloomberg School of Public Health and The Monday Campaigns have found that Monday is the day when
many individuals seek out HIV/AIDS information. The analysis, “An exploration of weekly patterns in HIV-related behaviors: implications for successful interventions and future research” by Laura W. Fuentes, Morgan L. Johnson, MPH, and David R. Holtgrave, PhD, builds on other research that suggests that Monday is a reset day, when people look for resources such as informational hotlines, expert advice, and general health information. Researchers in the HIV information study analyzed literature reporting on weekly patterns of HIV information-seeking behaviors; the analysis was restricted to English-language articles. Along with an increase of HIV-related information searches on Mondays, researchers also found that risky sexual behaviors increase on the weekends, and, for those who are HIV-positive and in treatment, adherence to regimens goes down slightly on weekends. Additionally, researchers found that innovative care interventions, such as weekly text messages to HIV patients, improve antiretroviral adherence. They suggest, too, that expanding weekend clinic hours can help dismantle a significant barrier to testing and care. Ultimately, the researchers are committed to meeting people where they are and starting the engagement there, instead of asking individuals to adapt to already institutionalized practices and ideals. Understanding these patterns may help health workers and public-health strategists develop even more new ways to improve HIV-related linkages to testing and care, and therefore reduce transmissions and improve the health of individuals who are positive. The Monday Campaigns, a nonprofit public health initiative in association with Johns Hopkins Bloomberg School
of Public Health, Columbia University Mailman School of Public Health, and the Maxwell School of Syracuse University, is capitalizing on this trend with Man Up Mondays, a cheeky, sex-positive initiative to encourage sexually active men to stay on top of their sexual health and nurture practices, such as reflecting on their sexual health decisions, seeking out HIV and STI testing, and restocking condoms, that will benefit them. A&U corresponded with Morgan L. Johnson, director of programs and research for The Monday Campaigns and an author of the study, about the ideas behind Man Up Mondays and its early successes. Chael Needle: Are individuals to some extent trapped by the social construct: Monday as a reset day and Friday as a “party now, worry later” day? Is the ultimate goal to change health decision-making behavior so that any day can be a reset day, if need be, to connect to care? Morgan L. Johnson: To be clear, though we do advocate for Monday as a “reset” day, we don’t advocate for Friday as a “party now, worry later” day. As mentioned in the study, it may be the case that people treat Friday (and the weekend generally) this way, but what we’d like to see is more people building on their good Monday intentions throughout the week so that by the time the weekend rolls around, they are in the right mindset to protect themselves and make healthy choices. You are correct that any day can be a potential reset day and that quick connection to care is critical, but Monday seems to have the most potential as a reset day for coordinated public health communication: More people are paying attention to their health on Monday and are more willing to A&U • JUNE 2015
take action, whether it is getting tested or getting back on track with their medication adherence. Leveraging Monday as a day for communication improves the reach and efficiency of public health campaigns—very important in these times of diminished resources for public health programming. Even as the campaign has reached out to individuals of all gender identities, the name of the campaign reframes a gendered idea of having courage. Is there evidence that (young) men, culturally, tend to approach health with a sense of bravado, as in “I’ll soldier through the pain”? And is this what you are seeking to disrupt among all individuals? There are many reasons why men might not seek care, potentially including this “sense of bravado” you’ve described. Certainly there is evidence of there being a culture of prompting men from a young age to “tough it out,” which is often linked in the social sense to “being a man.” As illuminated in a 2014 paper in the American Journal of Public Health, these types of gender norms can ultimately prove harmful if they end up resulting in missed care opportunities. What we’ve tried to do with “Man Up Monday” is to shift the concept of masculinity as “toughing it out” to masculinity as “taking responsibility.” So far, this is indeed how the campaign has worked out, as evidenced by our success with the pilot programs at Planned Parenthood and University of Missouri and Murray State University [where the campaign has been shown to increase STI testing]. That said, we are of course aware of the fact that different populations may not internalize the “Man Up” concept as taking responsibility, so we are careful to monitor how the campaign is doing in all the settings it has been deployed—we certainly want to make sure the campaign is not promoting harmful gender norms. Is there evidence that these Monday health knowledge-seekers are akin to frantic WebMD searches when one discovers a new mole. If so, I imagine this less-than-calm mindset is anathema to feeling empowered about one’s health, and, in this context, sexual health. Is this what you are offering too—a calmer, destigmatized approach to JUNE 2015 • A&U
ing someone they did something “bad” that they need to “fix.” People are more likely to ignore those stronger admonishments than have an “a-ha” moment that gets them into the clinic for testing and/or treatment.
learning about testing and treatment? We don’t yet know very much about what people’s specific motivations are for running web searches on health topics on Monday. We have a few theories: that people are generally more motivated to make positive change on Mondays; that people feel guilty about weekend behavior and want to make up for it by doing better on Monday; that Monday serves as a sort of
“fresh start” or “mini New Year’s” during which people like to recommit themselves to their health resolutions. We’d love to tease this out a little so that future campaigns can target each of these potential motivations, but for the time being just knowing that there are far more people looking for help on Monday is sufficient justification for getting those messages out there at the beginning of the week. Indeed, we are keen to de-stigmatize testing and treatment, which is why our creative team went with the strategy of humor over some of the scare tactics you often see used in public health media campaigns. With this lighter approach, we hope that people do see Monday as a day for a fresh start—an opportunity to do better, which is a much more positive and effective way to promote health than tell-
You’ve seen successful pilot programs at Planned Parenthood of Southeastern Virginia as well as the University of Missouri and Murray State University. What are the campaign’s next steps in terms of research? As I mentioned, we’d really like to learn more about why people are motivated to take action on their health on Monday as it will help us to refine the messaging for different target populations. We are also interested in continuous quality improvement of our campaigns, so we will continue to collect feedback on the campaign materials themselves from the people that have seen them (i.e., the people that come into the clinic and report doing so because they saw a poster or other piece of creative material). Finally, as the campaign is adopted by other clinics, health departments, universities, etc., we want to make sure to evaluate the impact the campaign is having on actual testing and treatment metrics, or even prevention metrics such as condom usage. Beyond the research, we are also interested in testing out a more women-focused campaign we’re calling “Woman Up Monday” to see if that messaging resonates more with women than the Man Up campaign has, even though we know women have often responded well, even going so far as to accompany their male sexual partners to testing, an ideal outcome if ever there was one! For more information about Man Up Mondays, visit: www.mondaycampaigns.org/campaigns/ man-up-monday. Chael Needle interviewed researcher Patricia LiWang, PhD, about her silk protein film prevention candidate for the March issue.
BIT by Bit a vpu inhibitor candidate shows promise against hiv & hcv
HIV Reported data of BIT225 in HIV patients has produced interesting results and demonstrates two potential means of controlling HIV from the use of one unique drug. Studies found that BIT225 can reverse HIV-induced impairment of the immune system. In addition, BIT225 has been found to inhibit viral production in myeloid cells in viral reservoirs. Decreasing inflammation HIV antiretroviral therapy (ART) effectively decreases the level of HIV in the body with the goal of near complete viral suppression in the blood. This allows the immune system to rebuild or, at least, prevent further damage from occurring. Inflammation is likely the most catastrophic effect of HIV in the post-ART era. Inflammation is the overactivation of the immune system in response to continual pathogens, in this case HIV. Despite decreased levels of HIV in the body due to ART, the immune system sees the remaining ongoing HIV replication as a threat and tries to neutralize it, causing a continual activation of the immune system. This activation results in inflammation. Inflammation is extremely harmful to the body and causes what we refer to as comorbidities. These illnesses include heart disease, cancers, neurological conditions and bone disorders. In a Phase 1a/2b study in Thailand, twenty-one ART-naïve individuals were given either BIT225 or placebo for ten days. Researchers found that levels of sCD163—a marker of immune activation in macrophage cells, of which myeloid cells are a precursor—were significant-
ly reduced in those receiving BIT225, thus showing that the drug successfully reduced inflammation effected by macrophages in the viral reservoir. This is the first time a drug has been able to achieve such a reduction. “The aim of drug treatment for HIV is to not only reduce virus levels, but also to dampen down the associated immune activation. BIT225 can potentially target both sides of the problem, resulting in reduction of virus and a normal functioning immune system,” said Dr. John Wilkinson, Senior Virologist at Biotron, the biotech that is developing the agent. The reduction of viral reservoirs Because macrophages, those long-lived cells that are believed to make up part of the HIV viral reservoir, live much longer than other cells, some researchers believe that they may be a vital factor to the persistence of viral reservoirs. The reservoir maintains a very low level of replication despite the decrease of HIV in blood due to ART. The latent cells that harbor resting HIV are thought to be the primary obstacle to developing a strategy to eradicate HIV. In the same study as described above, researchers found that BIT225 decreased the level of HIV in monocytes. The highest reduction was seen in study participants who had the greatest levels of HIV. BIT225 would likely be used in combination with other antiretroviral medications in order to reduce the amount of HIV in the blood and prevent continued replication in viral reservoirs. Biotron suggests, “BIT225 is a candidate agent that could be useful in future eradication strategies.” Hepatitis C Approximately twenty-five percent of HIV- positive people in the U.S. are co-infected with hepatitis C. Co-infected individuals have historically not responded to HCV treatment as well as those with HCV mono-infection. BIT225 is being studied specifically for people who are co-infected. In a small study of HIV/HCV co-infected individuals with genotype 3a who were given BIT225 along with interferon and ribavarin, all of the study participants achieved sustained virologic response (SVR) HCV RNA levels at twelve weeks. The rate of
SVR in patients with genotype 3a in Thailand, where this study took place, is 68.8 percent. In comparison, researchers saw a 100-percent SVR rate when BIT225 was added to interferon and ribavirin. BIT225 was also tested in patients with genotype 1, the most common HCV genotype (approximately 83.4 million people worldwide are living with it). In this study, 100-percent of study participants who received 400 mg of BIT225 in combination with interferon and ribavirin maintained SVR at forty-eight weeks. Studies with newer HCV therapies are needed. If results continue to be positive, BIT225 could be used in several different ways to treat people with HIV as well as people co-infected with HCV/HIV. The reduction of inflammation as well as the ability to reduce reservoir virus levels would make this drug a novel and advantageous addition to the present arsenal of HIV therapies and a potential player in the possible eradication of HIV. Jeannie Wraight is the former editor-in-chief and co-founder of HIV and HCV Haven (www.hivhaven.com) and a blogger and writer for TheBody. com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in New York City. A&U • JUNE 2015
illustration by Timothy J. Haines
IT225 is a new type of antiviral called a Vpu inhibitor, which researchers are investigating to treat both HIV and HIV/ hepatitis C (HCV) co-infection. This potential therapy is among the more compelling drugs in the HIV pipeline, offering two mechanisms of action for the treatment of HIV. In addition, data shows that BIT225 has a 100-percent sustained virologic response (SVR) in difficult to treat HCV genotype 3a in combination with ribavirin and interferon.
High Risk, High Reward
photo by Michael S. Wirtz/staff photographer © Philadelphia Inquirer
ith new, game-changing hepatitis C meds available or in the pipeline, an emerging issue is how to find at-risk patients, get them screened and link those with the hepatitis C virus (HCV) with care. It’s something that many believe is too difficult. The belief is that many at-risk populations are poor and unreachable, unfamiliar with health care settings, lack insurance, and won’t follow-up and stay on treatment regimens even if they’re diagnosed with HCV. One study published in the February, 2015 issue of the Journal of General Internal Medicine shows that outreach to medically underserved areas can overcome these barriers, if done right. The study documented the largest non-clinical hepatitis C screening campaign in history, according to the study’s senior co-author Dr. Amy Nunn, Director of the Rhode Island Public Health Institute and assistant professor of behavioral and social sciences in the Brown University School of Public Health. The campaign, “Do One Thing, Change Everything” campaign (http://1nething.com/) was a collaboration between Drexel University College of Medicine and Brown University School of Medicine to encourage HCV testing in communities with high rates of infection, by simply going door-to-door and asking people to get tested. Working with a team including lead author Dr. Stacey Trooskin of the Drexel University College of Medicine, Nunn started with an HIV and hepatitis C screening and linkage-to-care campaign across several Philadelphia neighborhoods. “We chose the neighborhoods based on the rate of HIV, which we already knew, in certain zip codes,” Nunn says. “We found that a three-percent rate of HIV in those zip codes, which are on par with sub-Saharan Africa.” Because HCV and HIV often travel together, Nunn and her colleagues knew they were likely to find many people at risk of hepatitis. The Do One Thing program’s team included physicians, phlebotomists, “patient navigators,” social workers and volunteers. Starting in December 2012, team members went door-to-door to offer screening at either a full-service mobile unit four days a week, or at the nearby health annex six days a week. At
JUNE 2015 • A&U
community-based outreach overcomes obstacles to screening and linkage to care both facilities they performed rapid screening tests, through mouth swabs or finger sticks. For any positive results, phlebotomists drew blood for confirmation of HCV. When blood work confirmed Do One Thing Outreach worker Beth Rutstein (left) encourages Jhanee Franklin (right) to be tested for HIV in the mobile medical van. HCV, the next step was (seventy-five percent) who did not have health linkage to care. insurance obtained it after their hepatitis C The team got almost everyone signed up with diagnosis (sixty-six percent already had insurMedicaid and made sure they made appointance at the time of diagnosis). ments with PCPs and specialists if they were • Twenty-nine out of thirty-two particreferred. Getting a referral to a hepatitis C ipants (ninety percent) who obtained or subspecialist was the most difficult hurdle, already had health insurance found a primary researchers said in the paper, and required an extra primary care physician visit, which care provider. created “an opportunity for disengagement, • Twenty-three out of twenty-nine (sevenparticularly for vulnerable populations with ty-nine percent) participants with a primary low health literacy.” care provider were referred to hepatitis C “Basically the patient navigators hold their specialist care. hands through the whole process of linkage • Twenty-one out of twenty-three (ninety-one to care, including following up to see that they percent) participants with a referral to a hepatitis actually went to the doctors,” Nunn says. C specialist attended their appointment. As of February 2014, the Do One Thing The community-based outreach model team had tested 1,301 people and found that used by Do One Thing works, Nunn says, and four percent had anti-HCV antibodies. That’s she hopes that it can be replicated throughout higher than the rate for Philadelphia citywide, the country in similarly troubled neighborand about four times the national average. hoods, but admits that most state health And the effort continues. Patient navigadepartments have been unwilling to earmark tors will continue to hold the patients’ hands money for extensive community intervention all the way through SVR with a follow-up and treatment for all. one year later. The study’s other authors are Joanna Poceta, Caitlin Towey, Annajane Yolken, Jennifer Linking a troubled population to care Residents who agreed to be screened Rose, Naija Luqman, Ta-Wanda Preston, Dr. filled out a demographic questionnaire, and Philip Chan, Dr. Curt Beckwith, Sophie Feller, the data from those surveys showed a highly and Hwajin Lee. Funding for the research troubled population. A third of the people (433 came from an HIV FOCUS grant of Gilead of 1,301) had been incarcerated, many had his- Sciences, the National Institutes of Health tories of drug use or mental health conditions, and the Brown University Alcohol Research and more than half earned less than $15,000 Center on HIV. a year. A large percentage showed signs of heavy alcohol use, which is devastating for the Larry Buhl is a radio news reporter, screenwriter, liver, with or without the addition of HCV. and novelist living in Los Angeles. His podcast on Over the sixteen months of the study: employment issues, “Labor Pains,” can be found at • Nine out of the twelve participants www.laborpainspodcast.com.
Pride & Ambivalence some tips for surviving june
This is the spectrum of feelings that my psychotherapy clients express during June, that strange month when there is hypervisibility and hyperawareness of LGBTQQI people in the media and in the streets. Some of my clients love it—they feel visible and recognized. And some hate it. The ones who hate it are unhappy for a variety of reasons: The crowds are overwhelming. The pressure to be happy and celebratory is immense. And certainly in the past decade, there are things to celebrate: Marriage Equality as a broad spectrum conversation leading to first steps in new federal protections. PEP and PrEP. Newer and less toxic drug combinations. Slightly easier access to healthcare. There are also things to mourn: a rise in HIV infection rates among lower income communities and communities of color, the horrific increase in bullying and hate crimes, more and more suicides of young LGBTQQI and trans folks. And within the celebratory realm, there often isn’t space to grieve, to feel the absence of our community members who have died. June is a perverse month, where attention abounds about the history of our movement, but not about the casualties in our community. Visibility highlights absence. Longterm survivors both seropositive and negative may find that our experiences aren’t recognized by younger community members who didn’t live through the years of terror before the protease inhibitors. As HIV has become seen as a chronic
manageable illness, people who are newly diagnosed HIV-positive may have difficulty finding space to have all of their feelings mirrored about how their diagnosis will impact their sex and romantic life, their family, and their sense of their embodied future. In the first Pride Parade that my friends and I went to, we marched with ACT UP. ACT UP became our community and my family. Five years after that first parade, more than half of my chosen family had died. I walk into Pride month experiencing the same range of feelings my clients do. Overwhelmed by the crowds but wanting to celebrate. Feeling my way toward a visible queer family. And deeply grieving and longing for my family who are gone. A few years ago, a lesbian couple from my beloved ACT UP family came to San Francisco for Pride weekend. We had dinner and told stories, reminding one another of things and people we had almost forgotten in the twenty years that have passed. They rode in the opening contingent of the parade with Dykes on Bikes. One of them has been HIV-positive for more than twenty years. Most of her cohort is gone. But I stood on the sidelines of Market Street and watched them roar past. Still here. When I look through my photos from that Pride march, some of which were taken from a balcony above the parade, there is a fabulous balloon sign declaring “Love Won.” The sign was referring to Marriage Equality. But it also holds true for community. Love wins when we take care of each other, when we make space for each other’s experiences, when we remember together and keep imagining a future with room for our whole experience. Here are a few small things you can do to survive and thrive during Pride:
• Find ways to engage in dialogue with people who have different experiences of AIDS/HIV—across generations, genders, and serostatus. • Know that it is also fine to need to share space and time with people whose experience closely mirrors your own. • Take a walk or dance or do yoga or stretch—something to move your body. • Remember that you have a body, and spend time feeling what it needs. Then try to do it. • Eat and drink whatever will help you feel enlivened and present with yourself. • Get more sleep. • Ask for help. • Offer help to others. • Spend time with those who love you and whom you love. Keiko Lane, MFT, is a Japanese American writer and psychotherapist. She writes about the intersections of queer culture, oppression resistance, racial justice, and liberation psychology. She has a psychotherapy practice in Berkeley, California, specializing in work with queers of all genders, artists, activists, academics, people affected by HIV/AIDS, asylum seekers and other clients self-identified as post-colonial. Keiko also teaches graduate and post-graduate psychotherapy courses on queer and multicultural psychotherapies, the psychodynamics of social justice, and the embodied literature of exile. She is a long-term survivor of ACT UP/Los Angeles. Visit: www.keikolanemft.com. A&U • JUNE 2015
photo by Michael Dumas
love June! All of the Pride parties and events make me proud to be gay! All the cute queers to cruise!” “I hate Pride month. I get totally overwhelmed by the crowds and the expectation to be endlessly social.” “Visiting San Francisco for the Pride Parade is the reason I fell in love with this city and moved here. This was what I always dreamed of.” “I always get depressed during Pride. Most of the people I’ve loved are dead, and I’m worried about my future. I can’t relate to the celebratory energy.”
photos by Christian Grattan Photography
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E R U CULT S THE
character, Merce, a makeover...and also think about an actual budget for their project, as well as professional filmmakers and actors. The result was a new online comedy series, called Merce. Some may think that HIV and comedy don’t mix. Merce might just prove them wrong. “HIV
Merce: A Modern Day HIV Comedy writer & actor charles sanchez talks about his new on-line comedy series
“I think Merce is about more than HIV or gay people,” Firmin says. “I think it’s about surviving and having a great attitude about life, no matter what happens to you. We all need a support system of family and friends to make
the rough stuff a bit easier. And everything is better with a song, a dance, and a bawdy joke!” There will be eight ten-minute episodes of Merce. A premiere party is scheduled on July 15, at the LGBT Center in New York City, to celebrate the release of Merce the very next day, on July 16 After the first episode on July 16, new episodes will air every Thursday until September 3. While, at this point, there are no concrete plans for the future of the show, there is hope that it will succeed, and, in turn, lead to a second season. “And we don’t mind if some big networks found us, and produce [Merce] on a larger scale,” Sanchez concludes. “I mean, Oprah’s network could use a good comedy, no?” To find out more about Merce, and keep up with the show, please visit www.mercetv.com. Alina Oswald is Arts Editor of A&U. A&U • JUNE 2015
photos courtesy Tyne Firmin
is a subject that doesn’t get a lot of press these days, but it hasn’t gone away,” Sanchez comments, reflecting on his by Alina Oswald new show. He goes on mentioning that HIV is still affecting many people, and that it is not allamboyant, funny, outrageous, ways easy for HIV-positive individuals to know glamorous, bawdy, while also how to live with the virus. Also, there is still too very much “the guy next door” much stigma attached to it, even today. (in a funny, glamorous way Hence, the idea of a show that would that is), Merce captures, ever help end HIV/AIDS-related stigma. so candidly, and also fearlessly, the reality “I wanted of living with HIV/AIDS in today’s society. to create a Mama (Tyne Firmin) Who or what is Merce you might ask? modern HIV Skypes with Merce Merce is the lead character of a new online story,” Sanmusical comedy with the same name, chez further created by Charles Sanchez, and directed explains, “one by Tyne Firmin. that didn’t end in death. Every show or The idea of Merce started out three movie with an HIV theme seems to years ago as a web series called Manhattan only tell a story from thirty years ago, Man-Travels, written by Sanchez and filmed and is tragic. Those are true and necesby Firmin, about a middle-aged man called sary stories, to be sure, but I wanted to show Merce, living in New York City. After two someone with HIV today, who isn’t ruled or seasons, with no budget, and not much defined by the condition, and who, like experience, they decided to me, is actually enjoying his life.” give the It turns out that Sanchez didn’t only create Merce (he wrote the role of Mama especially for Firmin), but he also plays Merce in the series. When I inquire about the name of the show, Sanchez mentions that he’s always loved the name, Merce. “My father had wanted to name me Merce when I was born, [but] my mother won. I’ve just always thought it was a cool name, and here was my chance to use it.” Sanchez and Firmin fundraised their project on Indiegogo, raising $15,000. They cast over twenty actors, and brought Merce creators Charles Sanchez and Tyne Firmin amazing artists to the team, including composer and lyricist Ken Kruper, who wrote the original songs for the show.
A Calendar of Events
photos by Holly Clark Photography
am-packed with conferences, workshops, and events aimed at increasing HIV/AIDS awareness and reducing stigma in the Greater Philadelphia area, Philadelphia Fight’s AIDS Education Month will start off with an opening reception and awards ceremony at the Independence Visitor Center on June 2. At the ceremony, activist and speaker Deon Haywood, the Executive Director of Women With A Vision (WWAV), a New Orleans-based community organization that seeks to support marginalized women, their families, and their communites, will be honored with the 2015 Kiyoshi Kuromiya Award. A tribute to Gloria Casarez, former director of the Mayor’s Office of Lesbian, Gay, Bisexual and Transgender Affairs, is also planned. Here’s a schedule of what is planned: • Opening Reception and Awards Ceremony, Tuesday, June 2, 5:30–7:30 p.m., Independence Visitors Center, 6th & Market Streets • Prevention and Outreach Summit, Monday, June 8, 8 a.m.–6 p.m., Pennsylvania Convention Center, 13th and Arch Streets • Gospel Concert featuring J.J. Hairston & Youthful Praise. Sunday, June 14, 5 - 8 p.m., Mt. Airy Church of God in Christ, 6401 Ogontz Avenue • The Summit Ball: Climbing Our Way to the Top, Saturday, June 20, 7 p.m.–midnight, University of the Arts, Hamilton Hall, 320 S. Broad Street • Hip Hop for Philly featuring Wale on National HIV Testing Day, Satur-
day, June 27. For more information, please visit www.fight.org/hiphop. • Community Cookout, Sunday, June 28, 11 a.m.–3 p.m., Fairmount Park, Area #2, 33rd Street and Cecil B. Moore Avenue The AIDS Education Month will also feature educational presentations in various communities, special events tailored to target populations, and testing outreach. Philadelphia FIGHT is a comprehensive health services organization providing primary care, consumer education, research, and advocacy for people living with HIV/AIDS and those at high risk. FIGHT’s goal is to end the AIDS epidemic within the lifetime of those currently living with HIV. For more information, log on to: www.fight.org.
Ruby’s Rap continued from page 16
was not very good at it. I walked away with two huge bruises on my arms. But I remember thinking, “That’s okay, I’m doing what I need to do.” I felt proud—bruises and all.
The Trevor Project and I think there’s a tie-in for connecting with youth there…. Swell, Nicholas. Whom do you consider a hero in the epidemic? All of those men and women who first took up the fight. They started organizations, like APLA, and although they were small in numbers, they were huge in determination and heart. They set up telephone hotlines. They fought back against government silence. Those first pioneers are the true heroes.
Ouch! Even though you and Nick have a monogamous relationship, do you still get tested? When I was younger, I got tested periodically. It had been a while since I last got tested. Recently, Nick and I were walking by an AIDS Healthcare Foundation van—Blair Underwood was on the advertisement—and at the same time we both said, “Why not?” It was all done with a swab of the cheek and within moments had our results. It was very easy—and no bruises this time! Amen, Sister Agnes Clare. That was a teacher of mine in an all girls’ prep school. I know you’ve donated to AIDS charities and have attended an AIDS Walk, but how did you begin helping out, and why? Well let me just say that I’m glad there are grass-roots organizations around like APLA. It was a friend of mine who first introduced me to it. [He pauses.] This epidemic affects us all and it’s the responsibility of everyone to get involved. This friend sounds quite special. What is JUNE 2015 • A&U
Selfie of Nicholas and his beau, Nick, fishing in the Eastern Sierra your focus now within the HIV and AIDS community? I would like to find a youth-centered organization with an outreach program. [Nicholas takes a sip of green tea.] I think it’s all about breaking down the fear of testing. I want to educate youth and shatter those walls of fear. [He ponders, his hush-puppy auburn eyes darting upward.] I’ve been involved with
A resounding “affirmative” from me, Nick. [He carries a couple of used plates from the dining room table into the kitchen, placing them in the dishwasher, returning with a teapot to refill my cup with green tea.] Thank you, sir! Any parting words, my friend? Yes…that HIV and AIDS is still an issue. Some people, though, have this sense of invulnerability. They believe that since meds are available there’s no need to protect themselves from diseases…that could forever change their lives. 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.
Indiana continued from page 37
“Much of it the overall reduction [in funding] was targeted at Planned Parenthood because we provide abortions at some of our health facilities,” Stauffer tells A&U. “This goes to the frustrating and unfortunate reality that goes along with the stigmatization of abortion and the marginalization of centers and doctors who provide them.” Although Stauffer is hesitant to make a direct correlation between the closure of a particular health center and the Scott County outbreak, she says the lack of testing facilities does speak to the larger issue of a lack of public health infrastructure in rural areas. “These areas don’t have the population densities that sustain a non-subsidized practice.” Stauffer points out that in Scott County, and in many rural areas across the U.S., Planned Parenthood facilities, whether or not they offer abortions, are—or were—the closest places for any health services.
prevented if we had presence as healthcare groups and community outreach there. We have gutted our state of reproductive health services, which many people use for primary medical care because their doors are always open. Now in Indiana we have a crappy, underfunded health care system burdened by addiction.” Meyerson says what’s needed, longterm, is funding for primary care and for testing. “We are not testing for HIV. When they do test, it’s because you’re
to stop this crisis, when in fact the oppressive stance toward drugs caused this health disaster.” Preventing the next outbreak It remains to be seen whether the state legislators appreciate that what’s happening in Scott County can happen, and may be happening, in other counties. Stauffer is cautiously optimistic. “I think this has opened up an opportunity for dialogue and I give credit for lawmakers who are now willing to enter discussions about public health delivery in the state,” Stauffer says. She adds that there needs to be more funding, soon, plus a larger culture shift. “We need community-wide embracement of promotion of healthy behaviors and willingness to meet people where they are with access to care.” Meyerson is slightly less optimistic that the outbreak will be a true wake-up call. “We’re not screening anywhere else. HIV funding cannot cover every county for testing. We don’t have the resources to fan out to other communities like Scott throughout the state. I know that Wayne County, just north of Scott, has a heroin problem and they are worried about HIV in their community. But again there is no screening and we don’t know what we don’t know. We have to invest in the system to identify health needs and I’m not sure enough lawmakers are learning any of those lessons.” And even if the state ups its game, the culture of rural Indiana may still present roadblocks to helping addicts recover and reduce their risk of HIV and HCV. Meyerson points out that Scott County, Indiana, until a few weeks ago, was not that different from rural counties in many parts of the country: underfunded, neglected, without health care and addiction services and ripe for the spread of disease. “There are two Scott Counties,” she says. “One county that’s stuck in the 1960s, and one that’s a userville, a ghost town with men and women lost in addiction and their families affected by it.” And she adds the demographics of Scott County are not too different from many other counties across the nation.
“The response to the HIV/HCV outbreak has been fast and furious.”
What’s the matter with Scott County? The response to the HIV/HCV outbreak has been fast and furious. In March, Governor Pence issued a temporary executive order that made it possible for federal state and county governments to collaborate in ways they hadn’t before. Foundations stepped forward to pay for needle exchange. Many disease specialists are giving time for free. Eligibility for state’s new state health care exchange, Healthy Indiana Plan (HIP) 2.0, was sped up. And there is a new clinic in downtown Austin, a town of 4,200 about an hour’s drive north of Louisville, Kentucky. That’s where the temporary needle exchange effort, based on Pence’s March order, is centered, and where HIV testing will presumably continue after the order expires. Despite federal dollars and outreach help from groups like the California-based AIDS Healthcare Foundation and testing services from the Damien Center in Indianapolis, officials admit the underlying conditions in the region will still be there when the HIV surge stabilizes. “The state health department is doing a great job with two hands tied behind their back,” says Beth Meyerson, Assistant Professor of Health Policy and Management and the Co-Director of the Rural Center for AIDS/STD Prevention at Indiana University. “I think an outbreak would have been
symptomatic. By definition, that’s not routine. Routine screening is, ‘I’m running labs on x y z, let’s check for HIV too.’” Meyerson points out that the area has long been underserved by primary care. “Many of these men and women have had zero health care for their whole lives. The community itself is not served from a primary care standpoint.” Workers in the area, many who came from out of state, say that they’ve run into a big obstacle in doing outreach and prevention: Scott County. Dan Bigg, who leads the Chicago Recovery Alliance, went to Scott County to consult with Opana users to find out what they might want and, eventually, provide a model for the state on how to scale up services and engage users. He tells A&U that the effort, especially needle exchange, was a success, exchanging about 50,000 syringes in five hours, until the county shut the whole thing down, in a violation of the Governor’s order. “The state department of health is very competent and gets what needs to be done, but Scott County has been making the same mistakes that caused this problem,” Bigg tells A&U. He points to the county health department, which is allowing syringe exchange again, though with strict limits, and mistakes that have compromised the anonymity of users. And worse, law enforcement in the county is still arresting people for possessing hypodermic needles. “Arresting people for needles, when we’re trying to give them clean needles, that’s as counterproductive as you can get. They act like locking up people is the way
Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His podcast on employment issues, “Labor Pains,” can be found at www.laborpainspodcast.com. A&U • JUNE 2015
JUNE 2015 • A&U
[a portrait by sean black]
Jack Mackenroth San Francisco, California AIDS activist and social media guru Jack Mackenroth, Senior Communications Officer for The Global Forum on MSM & HIV, has a seemingly limitless pool of good ideas: He art directed the soon-to-launch #PrEPHeroes campaign for Housing Works; turned on the taps for the HIV Shower Selfie Challenge; led the pack for the Braking AIDS Ride; and co-founded the HIV Equal testing intiative as well as Volttage.com, a dating and social networking site dedicated but not exclusive to HIV-positive men. “My attitude toward activism in general is to always be positive and encouraging, There are enough people out there trying to blame and shame us and I just refuse to engage any of that. I was ecstatic when I found out that Peter Staley was on the cover of this issue. He is my Madonna. I honestly believe I am alive because of him and those original activists. I don’t know if he knows this, but I cried the first time I met him.” Sean Black is a Senior Editor of A&U. 56
A&U • JUNE 2015
HIV TREATMENT CAN GET YOUR VIRAL LOAD SO LOW, IT’S UNDETECTABLE. GO FOR UNDETECTABLE.
There is no cure for HIV, but being undetectable helps protect your health. See how. Watch “The Goal of Undetectable” at HelpStopTheVirus.com © 2015 Gilead Sciences, Inc. All rights reserved. UNBC1853 03/15