MAY 2015 • ISSUE 247 • AMERICA’S AIDS MAGAZINE
THE ACTOR & AIDS ADVOCATE IS ON THE RIDE OF HIS LIFE
HIV IN THE SOUTH
THE HARD-HIT REGION FIGHTS TO PROVIDE ACCESS TO HIV CARE
Food Is Medicine GOD’S LOVE WE DELIVER IS 30 & LOVING IT
plus • Benjamin Fredrickson • Insurance Barriers • Fabian Quezada-Malkin
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
. . . K L A IW
A fundraising walk starting and ending in Central Park
MAY 17, 2015
Benefiting GMHC and 40 other tri-state area AIDS service organizations.
sign up today!
Seth M. Rosen and Jacob K. Goertz
#aidswalkny GRAND SPONSOR
Stanley and Fiona Druckenmiller
Created and produced by MZA Events. AIDS Walk Founder/Senior Organizer: Craig R. Miller. ÂŠ MZA Events, 2015
Special thanks to
the Village Voice In Cooperation with
c o n t e n t s May 2015
42 Cover Gearing Up for the Next Season of The Game, Actor Jay Ellis Talks with A&U’s Dann Dulin About His Aim to Raise AIDS Awareness, His Commitment to Kiehl’s LifeRide & His Loss of a Special Uncle to the Disease
Features 30 In My Skin Fabian Quezada-Malkin Goes the Distance for AIDS/LifeCycle 36 Gallery Fighting AIDS Stigma, Photog Benjamin Fredrickson Creates Beauty Through Community 40 Adverse Effects Critics Demand Fair Pricing from Healthcare Insurers
A Woman’s Voice
Brave New World
48 Southern Exposure HIV Advocates in the South Fight for Expanded Healthcare Access
The Whole Perspective
50 Delivering God’s Love God’s Love We Deliver Celebrates Thirty Years of Compassion
The Culture of AIDS
21 Poetry Inoculations by Raymond Luczak cover by Sean Black
Commitment to Life
obilizing Hollywood three decades ago against the fight against AIDS and the search for a cure, Dame Elizabeth Taylor was a trailblazer in firing up funding, awareness, and compassion. Taylor had been friends with actor Rock Hudson, who, before he died of AIDS-related complications, publicly disclosed that he was positive and became, like many others who were not so famous, a target of America’s stigmatizing fear of the disease. By dedicating her life to fighting AIDS, Taylor reversed some of that animus—AIDS, she seemed to be saying, was not tabloid fodder, a “story” to be dismissed when the media moved onto to the next “scare”; no, AIDS work was deserving of constant attention, constant funding, constant research, constant innovation. Like a true star, she reflected the light of tens of thousands of individuals living with the disease and dying of opportunistic infections. Among many of her accomplishments in the first decade of AIDS, Taylor organized and appeared at some of the earliest AIDS benefits, such as APLA’s Commitment to Life. Along with Dr. Michael Gottlieb, she helped to found the National AIDS Research Foundation, which would become amfAR. In 1986, she testified before Congress to support the Ryan White bill, legislation that would provide urgently needed funding for individuals living with HIV/AIDS. Many more accomplishments were to come. The foundation the activist started in 1991 is still going strong: The Elizabeth Taylor AIDS Foundation, which supports programs dedicated to direct care and prevention education. Among many of the grants awarded by the foundation in 2014, some were directed to one of the hardest hit regions in the U.S.—the South. Under the auspices of the Elton John AIDS Foundation, an Elizabeth Taylor AIDS Foundation grant in the amount of $100,000 went to fund AIDS Care Center for Education & Support Services, Norfolk, Virginia; Equality Foundation of Georgia, Atlanta, Georgia; Health Outreach Prevention Education, Tulsa,
A M E R I C A’ S A I D S M A G A Z I N E issue 247 vol. 24 no. 5 May 2015 editorial offices: (518) 426-9010 fax: (518) 436-5354
Oklahoma; My Brother’s Keeper, Ridgeland, Mississippi; and Racial Justice Action Center, Atlanta, Georgia. More help is needed where, across nine states that comprise twenty-two percent of the nation’s population, according to 2011 numbers, we find thirty-eight percent of the nation’s individuals diagnosed with HIV. As Chip Alfred reports in this issue, the AIDS crisis in the South is a crisis of treatment access, aporias in prevention education, and isolating stigma. As the advocates interviewed in the feature suggest, this problem is solvable. Change for the better is possible. AIDS advocate and this month’s cover story interview Jay Ellis knows this. The actor’s prescription is education: “Humans, for the most part, fear the unknown. It’s our nature. We have to do a better job of reaching out to the youth. HIV/AIDS awareness needs to be discussed in high schools, in youth programs, and at community centers. Everyone must get tested.” And while celebrities like Jay Ellis can shine a spotlight—or, as Ellis has ridden a motorcycle in Kiehl’s LifeRide, maybe we should say, headlight—on AIDS, one striking difference from the Elizabeth Taylor days and now is that those living with HIV/AIDS are speaking out in perhaps the greatest numbers ever. They have become our best ambassadors, sharing their recommendations for funding increases and policy changes, but also sharing their insights about everyday life as someone living with HIV. Inside this issue you will meet Fabian Quezada-Malkin, who is gearing up for AIDS/LifeCycle; Benjamin Fredrickson, a photographer who creates community through his images; and our newest columnist, Heather Arculeo, an activist and writer who has joined our team to delve into the lived realities of women living with HIV/AIDS. Like Liz, they represent all of us who have made a commitment to life.
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*
To learn more, visit HIV.Walgreens.com. * Vaccines subject to availability. Not all vaccines available in all locations. State-, age- and health-related restrictions may apply.
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x o b l i ma Winning Wendell
Wendell James is really a very fascinating and multifaceted personality [cover story, “Better Brother,” by Stevie St. John, March 2015]. Reading about him, I felt like he had his pulse on things. I work with adults with developmental disabilities and Wendell said things that resonate with me. People who have DD, as it is called, have lives, which include
churches and religion in relation to gay and lesbian people. Wendell says he is still a black Christian and is gay. I understand this very much. I am gay but I still belong to a church. There are still many preachers out there who condemn homosexuality as a great sin. Wendell says about God: “He was always comfortable with me....My struggle is my flesh desire [men] and church teachings; [it’s not of God].” Wendell, I can really relate to you. This is an important discussion we should all have. —Robert Stafford Nashville, Tennessee
A Good Read Reading your Culture of AIDS section, I was fascinated to find out that your magazine and Black Lawrence Press came out with an anthology about the AIDS crisis. Art & Understanding: Literature from the First Twenty Years of A&U is a book that I want to buy and read. The thing I find interesting is that many of these writers were living with HIV and sometimes died of AIDS-related causes before they had a chance to write more, such as Assotto Saint and Craig G. Harris. Those who left us too soon need to be remembered for their
“Wendell James is really a very fascinating and multifaceted personality....I work with adults with developmental disabilities and Wendell said things that resonate with me. People who have DD, as it is called, have lives, which include sex and love and having babies. They are human and deserve to be treated as such.”
sex and love and having babies. They are human and deserve to be treated as such. As a black woman I agree with what Wendell had to say about black men: “As black folks, because of homophobia, a lot of black men—married—are on the ‘down low,’ having unprotected sex and thus infecting their wives and/or girlfriends....We are still, I feel, in denial and all churches, I think, should have outreach programs to address the issues.” Thanks, Wendell, for all your involvements with HIV and DD adults. —Rosemary Yunis Jones Naples, Florida I admire Wendell James for still having conflicting feelings over the role of
“Condoms and Corrections” [March 2015] really hit me. I must truly thank your reporter, Larry Buhl, for doing a story on this subject. I was incarcerated in prison in the nineties and I saw a lot of men having sex. I knew people who became infected with HIV and who died because there were no condoms available. I know about all the nonsense that men or prisoners are not supposed to have sex in prison. Please, this is all fine and dandy but the fact is that men need sexual release because no women are available—this is a fact of life. I am very glad that the state of California is taking a lead on this subject. The main goal is to prevent sexually transmitted diseases from spreading and [possibly] killing people. —Barry Thurman Gary, Indiana
creative talents and how far they could have gone with their art if they had lived full lives. But I am sure that the book is not just about death but about living and life itself. Thank you, A&U, for a major literary effort. —Marcia Palenta Galveston, Texas
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A&U • MAY 2015
photo by Sean Black
Correcting the Problem
NEWSBREAK Indiana AID An unprecedented spike in newly reported HIV cases in southeastern Indiana—more than eighty this year and more estimated in the rural region—has prompted the state’s governor, Mike Pence, to declare a public health emergency, and AIDS United AmeriCorps members announced they will help to provide their expertise and services. In partnership with the Indiana State Department of Health, Indianapolis-based AmeriCorps members who are trained in HIV prevention and testing will help local health departments set up testing sites at local businesses, doctors’ offices, and clinics to accommodate the new need for Indianans to know their status. A lack of infrastructure currently limits access to culturally competent testing and linkages to care to mount a response equal to this epidemic, which, according to officials is thought to have originated among individuals using contaminated needles or syringes and engaging in sex without prevention tools. “Serving our community, going where they need us most—that’s just part of being an AIDS United AmeriCorps Member. This is a community in desperate need of HIV testing and education. With our team we should—at minimum—be able to test 100 people a day. Our team looks forward to helping the Department of Health in any way we can,” said Jessica Miller, a current member of the AIDS United AmeriCorps Team in Indianapolis, in a prepared statement. The public service-oriented members of AIDS United AmeriCorps, which is the largest national AmeriCorps program wholly dedicated to fighting AIDS and in existence for twenty years, have been active in Indiana for ten years. Local coordination will be provided by The Health Foundation of Greater Indianapolis (THFGI), a private foundation that funds hard-to-fund heath-related projects. For more information, log on to: www.aidsunited.org/americorps.
illustration by Timothy J. Haines
New Guidelines Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected, a distillation of the most up-to-date research used by clinicians and patients, among others, to consider treatment strategies, has recently been revised to reflect new assessments of improving the health of individuals living with HIV-1, the most common strain of the virus in North America. The report was developed by the DHHS Panel on Antiretroviral Guidelines for Adults and Adolescents–A Working Group of the Office of AIDS Research Advisory Council (OARAC). Finding the right regimen is important not only to achieve viral suppression, but also to decrease the potential for side effects, comorbidities, and drug resistance, among other considerations. Changes include topics that range from strategies in response to virologic failure, poor CD4 cell recovery and persistent inflammation despite viral suppression, to acute/early HIV infection and HIV and hepatitis C (HCV) coinfection. “What to Start: Initial Combination Regimens for the Antiretroviral-Naive Patient” details the panel’s Recommended, Alternative, and Other options when it comes to selecting initial antiretroviral therapy for patients with HIV-1 who are treatment-naive, the panel made an array of changes, and some of the highlights are discussed below. Recommended regimens for treatment-naive patients have expanded to five, four of which are anchored by integrase-strand transfer inhibitors. Integrase-strand transfer inhibitors, or INSTIs, are inhibitors that block HIV-1 integrase, an enzyme HIV-1 needs to make copies of itself. The four INSTI-based regimens include: • Dolutegravir/abacavir/lamivudine (DTG/ABC/3TC); brand name: Triumeq The combination is recommended only for patients who test negative for human leukocyte antigen HLA-B*5701 allele. Patients on abacavir-containing regimens and who have a 5701 genotype have been known to have a hypersensitivity reaction, typically seen in the first six weeks of treatment with ABC. Reactions may include skin rashes, gastrointestinal symptoms, and respiratory symptoms, and may be life-threatening. • Dolutegravir plus tenofovir DF/emtricitabine (DTG plus TDF/FTC); brand name: Tivicay + Truvada • Elvitegravir/cobicistat (EVG/c)/TDF/FTC, brand name: Stribild MAY 2015 • A&U
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The combination is recommended only for patients with pre-treatment estimated creatinine clearance ≥70 mL/min, in order to protect patients with potentially limited kidney function. • Raltegravir plus tenofovir DF/emtricitabine (RAL plus TDF/FTC); brand name: Isentress + Truvada In the above regimens, 3TC may be substituted for FTC, and vice versa. One ritonavir-boosted protease inhibitor(PI/r)-based regimen. • Darunavir/ritonavir (DRV/r) plus TDF/FTC; brand name: Prezista + Truvada All of the recommendations were rated “strong,” on a scale of strong-moderate-optional, and were based on data from randomized controlled trials. Two previously recommended regimens were removed to the Alternatives category—atazanavir/ritonavir (ATV/r) plus TDF/FTC, or ritonavir-boosted Reyataz + Truvada; and efavirenz/TDF/FTC (EFV/TDF/FTC), or Atripla. To read the full update, log on to: http://aidsinfo.nih.gov/.
photos Marcel Crozet / ILO © ILO. All rights reserved. www.flickr.com/photos/ilopictures
Getting to Zero at Work “With two-thirds of our population younger than 25 years old, HIV threatens the fragile human capital fabric it took us so long to build in Africa. HIV leaves a void in the already small cohort of trained teachers, doctors and nurses we have. We cannot be successful without preventing HIV and promoting zero discrimination at work.”—Donald Kaberuka, President of the African Development Bank Group (AfDB) “The response to HIV and AIDS cannot be effective without the active involvement of employers. The Federation of Kenya Employers is fully engaged. We will continue to lead the Employers’ efforts in the fight against HIV and AIDS Speech of Alice Ouedraotill we get to Zero.”—Jacqueline Mugo, Executive Director, go, Chief of ILOAIDS, on Federation of Kenya Employers the occasion of the World “A healthy community means a healthy workforce, and AIDS Day at the ILO. Employers investing in their Human Capital ensure that the HIV and AIDS is addressed through the world of work, leading to a more productive nation.”—Adv. Vekuii Rukoro, President, Namibian Employers’ Federation These quotes, from a new publication by the International Labour Organization (ILO), an United Nations agency dedicated to the labor sector, and UNAIDS called “AIDS is Everyone’s Business,” represent prominent business leaders from Africa, where more than half of the adult population living with HIV do not know their status, and elsewhere who have vowed to end workplace discrimination against individuals who are living with HIV or AIDS and to expand access to voluntary and confidential HIV testing, counseling, and treatment. This focus on getting to zero in the workplace, encapsulated in ILO’s Recommendation on HIV and AIDS (No. 200), is much needed. For example, those living with HIV are unemployed at three times the rate than average national rates, according to the UNAIDS Gap report. Workers with HIV/AIDS often face exclusion from healthcare insurance programs, further distancing them from the care they need. From a business perspective, companies, and entire economies, are negatively affected by a workforce that is not supported when it comes to addressing prevention or accessing healthcare. Business leaders around the world have joined ILO and UNAIDS’s Getting to Zero at Work campaign, which Close the HIV Testing Gap: The Human Ribbon on the occasion of the World AIDS Day at the ILO in Geneva on December 1, 2014. “promotes the rights of people living with HIV with a focus on labor rights and contributes to achieving the goal of zero new infections; zero discrimination and zero AIDS-related deaths. In particular, its VCT@WORK initiative seeks to make testing and counseling available to five million workers. In 2014, 1.2 million workers were able to take an HIV test through these efforts. Additionally, more than 34,000 workers in need of treatment were linked to care. Said Michel Sidibé, Executive Director, Joint United Nations Programme on HIV/AIDS (UNAIDS): “ILO’s efforts on Getting to Zero at Work are critical for an effective response to HIV. The workplace must protect the health and human rights of workers and ensure a safe and supportive environment for people living with or affected by HIV.” MAY 2015 • A&U
Ruby Comer: So, darling, tell me about Dear Uzuri. What does the name mean? Tangie Terry: “Uzuri” means beauty in Africa and it’s a movement designed to encourage women to properly heal from internalized pain and practice healthy communication.
Kudos to you for getting your life back on. After the rape did you get tested? Yes—and thankfully I’m HIV-negative. After that I started getting tested every few months. It’s funny. I don’t think I would have gotten tested if it weren’t for this scare. [She ponders.] Gee, how many people are walking this earth with that same mindset? There’s so much work to do! [Then she quickly exclaims.] There needs to be more testing trucks around....! Holy smoke! Glad you said that. Say, do you currently have a beau? No. I recently got out of a physically abusive relationship. Good. When you date, how do you broach the subject of HIV? You know, I really don’t. Now that I think about it, I’m going to start taking my future spouse with me to get tested! He’ll have no choice. This is a life-and-death matter, and it’s a requirement to be with me. That’s the spirit, girl. When did you first hear about the epidemic? I was around ten or eleven. The rapper Eazy-E and basketball star Magic Johnson were all over the news about contracting this virus. Unfortunately, Eazy-E’s life ended shortly after.
What spurred you to do this? Does it come from your own pain? Well, Ruby, I was raped when I was nineteen.
I remember well. Some ignorant people still think HIV is a gay disease…. This is silly because everyone has the capability of contracting this disease.
I’m...so…sorry, Tangie. How did it affect you? I tried to commit suicide. I didn’t realize I was raped until I took a Women’s Studies course. At first it was consensual and then I said, “no.” The moment I said “no” it should have stopped. I was pretty naive. Once it sank in, though, I felt worthless and dirty. I didn’t want to live anymore. I went to counseling and moved on.
Have you lost anyone to AIDS? Fortunately, no, but I have many HIV-positive friends, like Gabe [Gabriel Maldonado, founder of TruEvolution]. He was diagnosed one year ago. In this epidemic, he’s definitely a hero. He’s awesome and I’m honored that God allowed our paths to cross. Everyone needs a Gabe in their life.
How hunky-dorie. I’m sure he feels the same way about you. What motivates you to give to others? The constant turmoil in the world keeps me moving. I am here to empower myself, as well as others. [I accidentally spill a bit of drink on my Vera Wang scarlet cross-front Jersey gown. Tangie blots the stain with her napkin.] Oh, thank you. Clumsy me. By the by, I wanna know what you speak about at schools? Well, it comes from the heart and I share with them my personal testimonies and encourage them to move past their own obstacles. I discuss self-love and healing from any kind of pain. What do you want to leave with my readers, Tangie? Get tested! Start reading and educating yourself. Surround yourself with others who discuss the epidemic to gain multiple perspectives, and by all means—start taking care of yourself! For more information, visit: www.truevolution.org. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com. A&U • MAY 2015
Ruby illustration by Davidd Batalon; Tangie photo by Steve Cooper
’m smitten with this petite cutie-pie who stands before me at tonight’s fundraiser for the Elizabeth Glaser Pediatric AIDS Foundation. Although she looks like a fashion model and could give Lupita Nyong’o a run for her money, I just want to mother her! Tangie Terry, twenty-five, reaches out to educate LGBT youth on HIV through LeapOut. Founded by her friend, Gabriel Maldonado, and under the auspices of his non-profit organization, TruEvolution, their mission is to eliminate HIV/AIDS in America through education, mentorship programs, case management, and HIV testing. The 5’1” spitfire hails from Compton, California, has a Bachelor of Arts degree in Women’s Studies from the University of California at Riverside (UCR), and is developing her own NGO called Dear Uzuri. Her birth name is Tangela, “heavenly messenger.” We mosey outside the Beverly Hills Peninsula Hotel and sit on the curb with drinks in hand. The pinkish-orange-streaked sky is aglow as the sun sets. We marvel at the wonder of Mother Nature. I’m drinking an Irish coffee and Tangie sips on apple juice.
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me, and continued thinking I was the only woman with HIV. I resumed feeling this way even after I decided to leave the military. I thought maybe I would meet another female with HIV once I got out because I would be going to the Veterans Affairs Hospital in La Jolla, but I was still the only female patient getting treatment for HIV there, too. I remained alone and disconnected. It was not until my five-year anniversary of being diagnosed that I saw a Christie’s Place flyer, describing a women’s retreat for women living with HIV and AIDS. This was the first time that I became aware of the possibility that I may not be alone in this journey. A weight was lifted off of my shoulders, and immediately a sense of belonging overcame me. I signed up for the retreat, holding a little apprehension, but when I arrived at Christie’s Place I knew I had found the place where I did belong. At the retreat I learned that many other women were in the same position as I was. They had gotten the virus from their husbands. I knew this was how I got it, but what I didn’t know was how he got it. It wasn’t until this year that I got my answer. I had done what most suspecting wives do— looked through my husband’s phone. What I found was that my husband of ten years had been secretly sleeping with men, and knew he was HIV-positive before he even met me. So this is why my voice is relevant, because I am a positive woman with real knowledge surrounding a woman’s life with HIV. We all have faced a different struggle in the HIV community, but we all want to know how to move forward
and create change. I am here to educate, advocate, inspire, and empower HIV-positive people to start that change and fight to make a difference, and, if you are already in the process, knowledge is power. Knowing the issues that positive women face adds to the HIV community’s success in conquering this disease. 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. A&U • MAY 2015
photo courtesy H. Arculeo
would like to start my column by sharing who I am with readers, and why I am relevant to the HIV/AIDS community. I was your typical All-American small-town girl from Kansas, raised on a farm. I never remembered being educated about HIV, and I never felt like I needed it because it was a topic not relevant to us Kansans. I was wrong. I joined the United States Marine Corps as a firefighter straight out of high school, and married within a year. I had a daughter, but then divorced because I was in an abusive relationship. I remarried my best friend and had another daughter, but divorced again because it wasn’t the kind of love we needed. After the second divorce I decided to change my relationship views and rededicated myself to finding a special person that would love me and my girls. I didn’t want to make a third mistake, so this third time I waited to have sex and lived alone until I knew it was a sure thing. After two years of dating, I married my third husband. Everything was wonderful, and I was in love, but that all changed when I was told I was HIV-positive. I did not understand how this diagnosis was possible. I was married, had children, didn’t do drugs, and was definitely not sleeping around. This was far from the stereotype I had of individuals living with HIV and AIDS. Other questions that went through my mind were: How much time do I have before I die, did I give it to my kids, and how did I get it? Obviously, I lacked knowledge and understanding of what HIV was, or how it affected individuals, so I was immediately scheduled to attend a two-week class at the Naval Hospital in Balboa that would give me insight into my new diagnosis. When I arrived at Balboa, I was escorted into a room where other military members, who had recently been diagnosed, were seated. I was the only female, and eventually learned that I was the only heterosexual, too. I felt alone, isolated, humiliated, confused, but most of all I was scared. I still didn’t have the answers to my questions, but I went back to my usual life, pretending that my diagnosis did not exist. I was in extreme denial. I continued feeling detached from everything around
in memory of Bruce Hlibok (1960–1995)
Funny how much New York’s changed since you died. Rents have gone way, way up. Brooklyn is shockingly hip and unaffordable. Even artists starting out are getting out. Sleeping on a sofa in the living room for over a thousand dollars a month has become just too much. So few mom and pop shops left. New York’s a shopping mall turned inside out. Name a chain store, and it’s there. They are the only ones who can afford the rent. Greed’s become the latest sickness. I don’t speak in tongues anymore. I speak metaphors now. It’s safer. Just in case I get accidentally infected with what brought you down in the end, not the AIDS thing but that other plague of inconsolable rage you’d felt with everyone, including me. The deaf community held you back with their glances bordering on pox every time you mounted a new play. Didn’t help that you came from a prominent deaf family. Today no one seems to remember you. Are we all so easily infected to forget? When you died, I never thought I’d leave New York, the city that you and I loved, but I have. Even now my hands can hear you calling me back. —by Raymond Luczak Raymond Luczak is the author and editor of sixteen books, including How to Kill Poetry (Sibling Rivalry Press) and Mute (A Midsummer Night’s Press). His other titles include From Heart into Art: Interviews with Deaf and Hard of Hearing Artists and Their Allies (Handtype Press) and the award-winning novel Men with Their Hands (Queer Mojo). He is on-line at raymondluczak.com.
MAY 2015 • A&U
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).
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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
I’ve been diagnosed with HIV and I don’t know much about what’s going on, what to expect. I’m not on medications yet, I’m terrified of even catching just a cold and I can’t really talk to anybody because nobody knows. I mean, who is going to want to date me? —CP25 Philadelphia, PA
Well I’m guessing the book, What to Expect When You’re Expecting, is not the advice you were looking for but I’ll do my best to help you as much as I can. Okay, dude, first things first. You are going to be okay. I know you are horrified, but you will be fine. To tell the truth, a person with HIV can take a longer time to get over a cold, but you will probably not die because of a cold. With the ways that science and medicine are going a cold will not be the nail in your coffin. I honestly have not been sick in a long while; the only time I get “sick” is when the seasons change and that’s only because I have allergies. When you get a cold you are going to have to take care of yourself just as much as
you did before you were diagnosed with HIV. You said you have nobody to talk to about your diagnosis. I see that you live in the Philadelphia area. I must say that there are many resources that you can take advantage of. I advise that you find a support group so that you can talk about your feelings because there are a lot of emotions when one is diagnosed with HIV. Support groups are usually facilitated by volunteers and staff who are supervised by mental health professionals. Some of the groups hold weekly meetings for people affected by or infected with HIV/AIDS, their family members and loved ones. They are supposed to be confidential to keep your identity private. There are challenges that you are facing and are going to face as a person living with HIV that only others living with the virus are going to understand. Think about this as the beginning of a new life. Even though it may not seem that way now, trust me, the more you think about it this way, the more and more positive-minded you will become about your situation. Now is the time to take better care of you. Listen to your doctor; remember, just because you are diagnosed with HIV doesn’t mean that you have to go on medications immediately. I was diagnosed in 2006 and I didn’t have to go on medication until 2008.
Now here is the thing about dating while being infected with HIV: You have to keep in the back of your mind that you are bigger than HIV. There is a good chance that you might be rejected because of your HIV status. Do not worry about this; if the man rejects you because you have HIV than he is not worth it. Your main goal is hearing the “in sickness and in health” vow, right? Well, think about it this way: If that guy ever marries someone, that someone might be asking for trouble because if he can’t deal with sickness now then he might not be able to deal with it from a mate who gets sick with old age. Besides, now we have PrEP and condoms, so if they can’t deal with you being HIV-positive they are not worth your time, especially if they refuse to educate themselves about HIV and the wonderful preventative measures that we have in this day and age. Try the organization called ActionAIDS; it is Philadelphia’s largest AIDS service organization. ActionAIDS provides case management, financial services, counseling, support groups, prison services and advocacy to HIV-positive people. For more information about the organization, log on to: www.actionaids.org. You are going to be okay— trust me. There are plenty of people around to help you through this. ◊
• MAY 2015 A&U •A&U OCTOBER 2014
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.
A Collection of Attributes how to change from ugly to beautiful in just thirty-nine days
“I am blessed to know a lot of beautiful people.” He said, “You are all the most beautiful people I know; and I wanted you all to have the opportunity to get to know one another.” He then held his boyfriend’s hand, smiled warmly to the crowd, raised his glass, and took a sip of ice cold champagne. It was like something out of a fairy tale. And looking around they were indeed beautiful. All different types of people were there, men, women, Trans, Colored (can we still say colored?), White, old, young, and an adorable brown-eyed inventor in a wheelchair who I tried my darndest not to flirt with. They were physically and socially beautiful—spiritually and intimately beautiful—totally and completely beautiful. Everyone was kind, joy-filled, talkative, and invested in hearing each other’s stories (which is a rare thing for a fancy L.A. party.) It was a really great night and I was incredibly honored to be invited. The next morning I woke up with stars in my eyes! I was so grateful to have been there because it reminded me that I am a beautiful and talented and made for great things. “I am black, gay, poor, HIV-positive and made for great things.” I think we forget sometimes. I’ll speak for myself. I forget sometimes. “We are made for great things.” Thirty-nine days ago I was spiraling out of control, desperate and hungry for validation and connection—yearning for someone to love me and call me pretty, and standing just on the edge of the abyss. But that was thirty-nine days ago and a lot can change in thirty-nine days. I’ve deleted all the “dating” apps from my phone; because they were maddening, and frustrating, and terrifying, and sad. (And you’d be surprised and how few people tell you nice things on those things.) Thirty-nine days ago, I was feeling ugly and dissatisfied with my circumstances and starting to the think that perhaps everyone was awful. I was the strange ugly stepsister, infected in the corner and destined to live my life alone… .And then I was invited to a party. And we all know what happens when Cinderella is invited to the ball. And just
so we’re clear: I will be playing the role of Cinderella! I am black, gay, poor, and HIV-positive; and in certain circles those are not always seen as the most beautiful things to be. But those are not the circles I want to be a part of. I want to be with people who are able to see past the glass slipper and see me for me: Talented, creative, starry-eyed people who are just as strange, just as complex, and just as beautiful as me! Because we all want to be beautiful. I am not ashamed of my race; I am not shamed of my sexuality; I am not ashamed of my bank account; and I am by no means ashamed of the virus the runs through my blood. But I am so much more than these collections of attributes; I am vast and magical and made for great things. And thirty-nine days ago, just before the stroke of midnight, I was reminded that we don’t have to be invited to a party where other beautiful people tell us that we are beautiful to remember that we are beautiful. “You are Cinderella! And no matter what you see when you look in the mirror, you are ALWAYS the belle of the ball.” 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
am black, gay, poor, and HIV-positive. In most circles these are not the most beautiful things a person can be. And if there is anything in this world that I want, it is to be beautiful. I think we all want to be beautiful. I went to a wonderful party the other day. It was an artsy party with fizzy golden drinks, “farm to table” organic hors d’ouervres, and a dining room full of a hundred gourmet hand-made rainbow colored cupcakes of a dozen different flavors. It was like nothing I had ever seen before. We might as well have been transported to a mystical green forest with a banquet set by tiny fluttering fairies with baby blue butterfly wings on golden plates draped with silver-shining spiderwebs cast over cutlery like pearls—with wonderful pink and purple magical deserts that tasted of snozzberries and chocolate. The host of the event was a handsome twenty-six-year-old poet in a crisp white designer shirt, who was dating a promising political hopeful in a matching equally crisp white designer shirt; and when they stood next to each other in front of the crowd they looked liked the new young gay American dream. Anyone who thinks there is no gay mafia has never been to a really good Hollywood party. We were told that everyone at this chic crystal clinking event was individually invited because of their talents and artistic contributions and at some point in the night (a little before midnight) the princely host in his crisp white designer shirt said a toast:
A&U • MAY 2015
Itâ€™s the right time to change the story of HIV, but we can only move forward with your unwavering support. Our 30th Year Gala will be a rallying point for our most dedicated supporters to stand with AFC in this unprecedented moment in the history of HIV. Recent medical breakthroughs and shifts in the health care landscape have put AFC in its strongest position ever to prevent new infections and better support people living with HIV and AIDS.
Saturday, May 16, 2015
6:00 p.m. Reception 7:30 p.m. Dinner & Program Dancing until midnight
HILTON CHICAGO 720 South Michigan Avenue Tickets available at aidschicago.org/gala SPONSORS
Master of Ceremonies Amy Landecker
Aetna Better Health Bell Litho Printing Chicago Cut Steakhouse Cigna HealthSpring Janssen Therapeutics Lady Gregory's Irish Bar & Restaurant MillerCoors Public Communications Inc. Wilde Bar & Restaurant
Music by DJ Kiss
MEDIA PARTNERS A&U Magazine Chicago Magazine ChicagoPride.com GRAB Magazine Windy City Media Group
IN MY SKIN Fabian Quezada-Malkin Knows the Value of Finding Inner Peace Because He Knows All Too Well What It’s Like to Lose One’s Self by Dann Dulin
the streets for nearly a year. Occasionally he’d sleep on a friend’s couch. He started attending AA meetings, where he learned about the LGBT Center’s Transitional Living Program (TLP), an eighteen-month facility for eighteen to twenty-four year-olds who are homeless. The program teaches life skills and offers resources to help the homeless become autonomous. “It was so nice to just have a bed,” recalls Fabian, “but then the real work began.” Entering the program in 2004, Fabian received free medical care, attended AA and crystal-meth recovery meetings, and enrolled in an employment class, which helped to land him a job. “I entered the program having zero self-esteem and came out taking full responsibility for myself. TLP saved my life.” Sober for seven years, Fabian, thirty-one, has completely transformed his life! He’s now a precision colorist and revered hair stylist at a Beverly Hills salon. Last year, he tied the knot with Marc Malkin, an E! News correspondent, and Fabian even has a better relationship with his mother nowadays. In his down time he writes lyrics and is learning how to play the acoustic guitar. Currently this Rocky Balboa is in training for his fifth AIDS/LifeCycle, which starts at the end of this month.
A perfect day for Fabian is waking up in the morning next to his husband, while his two dogs, Paca and Jeb (the former, a mud Terrier mix and the other, a mud Maltese mix) romp about them, have breakfast together, then cuddle the rest of the day while watching a marathon of House of Cards and Orange Is the New Black.
Dann Dulin: What’s the best thing about being married? Fabian Quezada-Malkin: Knowing that I chose the right man! Do you two plan on having kids? We’ve had that conversation, but at the moment we’re not sure. But it’s something that could happen in the future. A&U • MAY 2015
photo courtesy F. Quezada-Malkin
IN MY SKIN Fabian Quezada-Malkin Knows All Too Well What It’s Like to Be Somebody Else abian was a singing teen idol who charted many Top 10 hits in the fifties and sixties. The Fabian of this article is not a professional singer, but after you hear his story you’ll find that he may also be in the pantheon of life achievers, as well. It has not been an easy life. Fabian endured radical transformations, from hustler to a seminarian to an addict and now to a survivor. It’s been a tragic and an inspiring journey. Born in Guadalajara, Mexico, his devout mother worked two jobs to support her family. Early on he knew he was gay and at fourteen, Fabian began hustling. At sixteen, his mother sent him to the seminary, believing that the strict monastic life would turn him straight. Indeed, he became Father Fabian and lived to serve the Lord…wait, wrong story. One night, Fabian snuck out of the monastery and went to a gay bar where he met a fellow priest. Fabian thought he had made a friend; instead the priest turned against him and made his life thorny, criticizing him constantly. Fabian was ousted from the seminary, and, feeling guilt and shame, he moved back to his mom’s. Afterwards, he met an older tourist from Long Beach, California, who became sweet on him and this man invited Fabian to move to the U.S. Believing that this was his only chance for freedom, Fabian relocated in 2001. Once settled, the seventeen-year-old enrolled in a high school program. Within a year though, liberty sprouted shackles. He discovered that he was HIV-positive, broke up with his boyfriend, quit school, and became hooked on crystal meth and booze. Down and out, Fabian medicated himself with his daunting turned-upside-down new life. He hit rock bottom, crashing on
What propelled you to pursue sex work when you were fourteen? I wanted to have extra money to buy new clothing and shoes. More often than not we never were bought new clothes or shoes. Was there any aspect of seminary life that you enjoyed? I liked the camaraderie, and being away from the pressure of my mother, who at the time, was trying to change me [to be straight]. What did you learn about being homeless? I learned to be grateful every day for having a roof over my head. When did you first hear about the epidemic? When I was in junior high. But I didn’t learn about the disease and all the people who had died from it until I got diagnosed here. How did you feel after being diagnosed
What motivated you to get tested? When health workers from the City of Long Beach came to my school and offered it. That was in 2001. What HIV meds are you taking and how do you boost your immune system? I take Stribild daily and I exercise and eat nutritious foods.
Left and top: Fabian on his wedding day, tying the knot with Marc Malkin
What keeps bringing you back to the AIDS/LifeCycle and what first brought you to it? You know, I love it more and more every year and I plan on doing as many as I can. Seeing posters at the LGBT Center in L.A. first inspired me. I also spoke to friends who had rode in the past. What keeps me coming back each year—and I realized it after I watched the movie, The Normal Heart—is that the fight is not over! There are people still getting infected who don’t have the money or other resources to pay for doctors and medications.
photos by PrettyThing Pictures
Does Marc ride with you? He doesn’t, but we are a team. A lot of donations I receive come from people who Marc reaches out to.
HIV-positive? Learning I was positive took a toll on my mental state, which I have worked on and continue to work on daily. It made me feel “less than,” like I was dirty, and that I was going to die. It contributed to the use of drugs and drinking. I wanted to escape because I didn’t want to tell anyone that I was HIV. MAY 2015 • A&U
Tell me about the ride itself. The journey is physically challenging—but it’s doable. Getting up really early in the morning gets taxing, but remembering what people with HIV and AIDS go through keeps me going. One of the big “ups” for me is what those who have done the ride call the “love bubble.” It’s where everybody takes care of each other, knowing that we all are there for one reason only—to end the battle of AIDS. Another great motivator is the beauty of Mother Nature that is all around us as we ride. There’s a steady rise in HIV infection in your generation and younger. Can you address this? We need to be more aggressive in schools early on, educating about HIV. I would say starting in junior high. The best way is to have former substance abusers
who are HIV-positive speak to students. As to reaching out to the ones who are actively using or drinking, information must be provided to them, but not force it. You would be a perfect candidate for this, Fabian. Have you spoken publicly? I have not, other than speak at meetings and share my story and sponsor others as well. Do you still attend AA meetings? I still do, yes. Whom do you look up to? Anyone who is happy and comfortable in their own skin. What do you look forward to? I take life one day at time. I look forward to growing as a hairstylist and also to keep writing music. What was the last movie that made you cry? The Normal Heart. Being that you work in a Beverly Hills salon, you probably encounter celebrities. Have you ever been starstruck? Always! I recently went to see [country music singer/songwriter] Dierks Bentley in concert and got to meet him after the show. I was speechless. Marc had to start talking because nothing was coming out of my mouth. What celebrity would you like to have mad animal sex with? Dierks Bentley! If you could go back twenty years, what would you say now to that kid, Fabian? I would say, “Keep doing what are you doing and you will have a beautiful amaz-
COMPLERA is a prescription medicine for adults who have never taken HIV-1 medicines before and who have no more than 100,000 copies/mL of virus in their blood. COMPLERA can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL) and whose healthcare provider determines that they meet certain other requirements. COMPLERA combines 3 medicines into 1 pill to be taken once a day with food. COMPLERA should not be used with other HIV-1 medicines.
COMPLERA is a complete HIV-1 treatment in only 1 pill a day. Ask your healthcare provider if COMPLERA may be the one for you.
Pill shown is not actual size.
A&U â€˘ APRIL 2015
COMPLERA does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them. It is not known if COMPLERA is safe and effective in children under 18 years old.
IMPORTANT SAFETY INFORMATION What is the most important information I should know about COMPLERA? COMPLERA can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking COMPLERA, your hepatitis may suddenly get worse. Do not stop taking COMPLERA without first talking to your healthcare provider, as they will need to monitor your health. COMPLERA is not approved for the treatment of HBV.
Who should not take COMPLERA? Do not take COMPLERA if you: • Take a medicine that contains: adefovir (Hepsera), lamivudine (EpivirHBV), carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol), oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek), rifampin (Rifater, Rifamate, Rimactane, Rifadin), rifapentine (Priftin), dexlansoprazole (Dexilant), esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), omeprazole (Prilosec, Zegerid), pantoprazole sodium (Protonix), rabeprazole (Aciphex), more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate, or the herbal supplement St. John’s wort. • Take any other medicines to treat HIV-1 infection, unless recommended by your healthcare provider.
What are the other possible side effects of COMPLERA? Serious side effects of COMPLERA may also include: • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood tests to check your kidneys before starting treatment with COMPLERA. If you have had kidney problems, or take other medicines that may cause kidney problems, your healthcare provider may also check your kidneys during treatment with COMPLERA. • Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: feeling sad or hopeless, feeling anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself.
Changes in liver enzymes: People who have had hepatitis B or C, or who have had changes in their liver function tests in the past may have an increased risk for liver problems while taking COMPLERA. Some people without prior liver disease may also be at risk. Your healthcare provider may do tests to check your liver enzymes before and during treatment with COMPLERA. • Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking COMPLERA. •
The most common side effects of COMPLERA include trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression. Other common side effects include vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles), and pain. Tell your healthcare provider if you have any side effects that bother you or do not go away.
What should I tell my healthcare provider before taking COMPLERA? All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, mental health, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking COMPLERA without first talking with your healthcare provider. • If you take rifabutin (Mycobutin). Talk to your healthcare provider about the right amount of rilpivirine (Edurant) you should take. • If you take antacids. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA. • If you take stomach acid blockers. Take acid blockers at least 12 hours before or at least 4 hours after you take COMPLERA. Ask your healthcare provider if your acid blocker is okay to take, as some acid blockers should never be taken with COMPLERA. • If you are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking COMPLERA. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in COMPLERA can pass into breast milk, and it is not known if this can harm the baby. •
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Brief Summary of full Prescribing Information with important warnings on the following pages.
Brief Summary of full Prescribing Information COMPLERA® (kom-PLEH-rah) (emtricitabine 200 mg, rilpivirine 25 mg, tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information. What is COMPLERA? • COMPLERA is a prescription medicine used as a complete HIV-1 treatment in one pill a day. COMPLERA is for adults who have never taken HIV-1 medicines before and who have no more than 100,000 copies/mL of virus in their blood (this is called ‘viral load’). Complera can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL) and whose healthcare provider determines that they meet certain other requirements. • COMPLERA is a complete regimen and should not be used with other HIV-1 medicines. HIV-1 is the virus that causes AIDS. When used properly, COMPLERA may reduce the amount of HIV-1 virus in your blood and increase the amount of CD4 T-cells, which may help improve your immune system. This may reduce your risk of death or getting infections that can happen when your immune system is weak. • COMPLERA does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. What is the most important information I should know about COMPLERA? COMPLERA can cause serious side effects, including: • Build-up of an acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take COMPLERA or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: – feel very weak or tired – have unusual (not normal) muscle pain – have trouble breathing – having stomach pain with nausea or vomiting – feel cold, especially in your arms and legs – feel dizzy or lightheaded – have a fast or irregular heartbeat • Severe liver problems. Severe liver problems can happen in people who take COMPLERA. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: – your skin or the white part of your eyes turns yellow (jaundice) – dark “tea-colored” urine – light-colored bowel movements (stools) – loss of appetite for several days or longer – nausea – stomach pain
• You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time. • Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take COMPLERA, your HBV may get worse (flare-up) if you stop taking COMPLERA. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. COMPLERA is not approved for the treatment of HBV, so you must discuss your HBV with your healthcare provider. – Do not run out of COMPLERA. Refill your prescription or talk to your healthcare provider before your COMPLERA is all gone. – Do not stop taking COMPLERA without first talking to your healthcare provider. – If you stop taking COMPLERA, your healthcare provider will need to check your health often and do blood tests regularly to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking COMPLERA. Who should not take COMPLERA? Do not take COMPLERA if you also take any of the following medicines: • Medicines used for seizures: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal); phenobarbital (Luminal); phenytoin (Dilantin, Dilantin-125, Phenytek) • Medicines used for tuberculosis: rifampin (Rifater, Rifamate, Rimactane, Rifadin); rifapentine (Priftin) • Certain medicines used to block stomach acid called proton pump inhibitors (PPIs): dexlansoprazole (Dexilant); esomeprazole (Nexium, Vimovo); lansoprazole (Prevacid); omeprazole (Prilosec, Zegerid); pantoprazole sodium (Protonix); rabeprazole (Aciphex) • Certain steroid medicines: More than 1 dose of dexamethasone or dexamethasone sodium phosphate • Certain herbal supplements: St. John’s wort • Certain hepatitis medicines: adefovir (Hepsera), lamivudine (Epivir-HBV) Do not take COMPLERA if you also take any other HIV-1 medicines, including: • Other medicines that contain tenofovir (ATRIPLA, STRIBILD, TRUVADA, VIREAD) • Other medicines that contain emtricitabine or lamivudine (ATRIPLA, Combivir, EMTRIVA, Epivir, Epzicom, STRIBILD, Trizivir, TRUVADA) • rilpivirine (Edurant), unless you are also taking rifabutin (Mycobutin) COMPLERA is not for use in people who are less than 18 years old. What are the possible side effects of COMPLERA? COMPLERA may cause the following serious side effects: • See “What is the most important information I should know about COMPLERA?” • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking COMPLERA. If you have had kidney problems in the past or need to take another medicine that can cause kidney problems, your healthcare provider may need to do blood tests to check your kidneys during your treatment with COMPLERA. • Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: – feeling sad or hopeless – feeling anxious or restless – have thoughts of hurting yourself (suicide) or have tried to hurt yourself • Change in liver enzymes. People with a history of hepatitis B or C virus infection or who have certain liver enzyme changes may have an
increased risk of developing new or worsening liver problems during treatment with COMPLERA. Liver problems can also happen during treatment with COMPLERA in people without a history of liver disease. Your healthcare provider may need to do tests to check your liver enzymes before and during treatment with COMPLERA. • Bone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the main part of your body (trunk). Loss of fat from the legs, arms and face may also happen. The cause and long term health effect of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having any new symptoms after starting your HIV-1 medicine. The most common side effects of COMPLERA include: • Trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, depression Additional common side effects include: • Vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles), pain Tell your healthcare provider if you have any side effect that bothers you or that does not go away. • These are not all the possible side effects of COMPLERA. For more information, ask your healthcare provider. • Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. What should I tell my healthcare provider before taking COMPLERA? Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, mental health, bone, or liver problems, including hepatitis B or C infection. • If you are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn child. – There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk to your healthcare provider about how you can take part in this registry. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take COMPLERA. – You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. – Two of the medicines in COMPLERA can pass to your baby in your breast milk. It is not known if this could harm your baby. – Talk to your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements: • COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works. • If you take certain medicines with COMPLERA, the amount of COMPLERA in your body may be too low and it may not work to help control your HIV-1 infection. The HIV-1 virus in your body may become resistant to COMPLERA or other HIV-1 medicines that are like it.
• Be sure to tell your healthcare provider if you take any of the following medicines: – Rifabutin (Mycobutin), a medicine to treat some bacterial infections. Talk to your healthcare provider about the right amount of rilpivirine (Edurant) you should take. – Antacid medicines that contain aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA. – Certain medicines to block the acid in your stomach, including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine hydrochloride (Zantac). Take the acid blocker at least 12 hours before or at least 4 hours after you take COMPLERA. Some acid blocking medicines should never be taken with COMPLERA (see “Who should not take COMPLERA?” for a list of these medicines). – Medicines that can affect how your kidneys work, including acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex), and valganciclovir (Valcyte). – clarithromycin (Biaxin) – erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone) – fluconazole (Diflucan) – itraconazole (Sporanox) – ketoconazole (Nizoral) – methadone (Dolophine) – posaconazole (Noxafil) – telithromycin (Ketek) – voriconazole (Vfend) Know the medicines you take. Keep a list of all your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. Do not start any new medicines while you are taking COMPLERA without first talking with your healthcare provider. How should I take COMPLERA? • Stay under the care of your healthcare provider during treatment with COMPLERA. • Take COMPLERA exactly as your healthcare provider tells you to take it. • Always take COMPLERA with food. Taking COMPLERA with food is important to help get the right amount of medicine in your body. A protein drink is not a substitute for food. If your healthcare provider decides to stop COMPLERA and you are switched to new medicines to treat HIV-1 that includes rilpivirine tablets, the rilpivirine tablets should be taken only with a meal. Keep COMPLERA and all medicines out of reach of children. This Brief Summary summarizes the most important information about COMPLERA. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about COMPLERA that is written for health professionals, or call 1-800-445-3235 or go to www.COMPLERA.com. Issued: June 2014
COMPLERA, the COMPLERA Logo, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, TRUVADA, VIREAD, and VISTIDE are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. ©2014 Gilead Sciences, Inc. All rights reserved. CPAC0115 08/14
The Beauty of It All
Photographer Benjamin Fredrickson uses his images and also his life story to help break down AIDS related stigma by Alina Oswald
love photographing people. There’s beauty in everyone,” photographer Benjamin Fredrickson tells me on the phone. “The imperfections [only] make my subjects beautiful.”
I met Fredrickson last summer, at the opening of “Ephemera as Evidence” [A&U, July 2014], a Visual AIDS art show in New York City. Earlier this year I had the pleasure to run into him again, at another Visual AIDS event, the Postcards from the Edge preview party. And I noticed the evolution that had taken place during these few brief months—still courteous, young and optimistic, definitely a distinguished creative individual as easy to talk to as I could remember him to be, only a bit less shy....There was certainly a vibrant, inviting energy surrounding him, and for good reason. Daniel Cooney Fine Art, a gallery, had just hosted his first photography show. Benjamin Fredrickson undoubtedly has always been an artistic, creative individual. Born and raised in the suburbs of Minneapolis, he went on to study photography at the Minneapolis College of Art and Design, and also briefly in Paris, in 2001. After graduating in 2003, he had plans of moving to New York, but they were thrown off by an unfortunate accident. So, in 2005 he started a personal photographic project, capturing his “queer community from Minneapolis,” as he describes it. In 2010 he suffered yet another debilitating incident—he was attacked. So, he left, and came to New York City for what was supposed to be a two-week visit. Instead he stayed, and never looked back. “I ditched the crutches when I got to New York,” he says, “hobbled around until my leg healed, took odd jobs in fashion and retail, and photographed on the side.” This coming October will mark five years of his new life in the melting pot that’s New York City, a melting pot that has provided the photographer with a wide variety of interesting subjects, and opportunities, and much competition, too. But the city has also offered distractions that, in turn, could have blocked the way of achieving one’s dream. Now, at thirty-four and looking
back at his journey so far, the photographer is glad that he has waited to try to take Manhattan and make it in the city. “With all the temptations in New York, had I come here in my early twenties, I totally would have burned out, and probably gone back home with my tail between my legs,” he confesses. Instead, during the past four or five years of living in the city, he has done a lot of growing up and maturing. It hasn’t been easy, and he had to struggle to make it happen, and yet, he doesn’t have any regrets. “The struggle of making it happen, that’s part of it,” he says. “It’s not easy, but it’s worth it.” Fortunately for Fredrickson, all his hard work has started to pay off. He started getting accolades for his work. Also, while in New York, he found out about Visual AIDS. “They’ve been so great to me,” he says. “I’ve gone to events [hosted by Visual AIDS] and started submitting to Postcards [from the Edge] in 2012. And then Ted Kerr [former Visual AIDS Program Manager] told me about [its] members. Since then, I had the opportunity to do the Play Smart campaign, and also received a Visual AIDS grant, which was amazing. Daniel Cooney [the gallery that represents me now] found my work through Visual AIDS website.” Diagnosed while still living in Minneapolis, Fredrickson hasn’t always been out about his HIV status. “It’s a personal thing,” he comments on coming out as an HIV-positive individual. “It took me a little time to express my views on it. [At first] I was scared and frightened, [but now] for me it’s important to share my story. I do it as a way to help myself understand it. Also, by speaking publicly about [my HIV status] and being open about it, hopefully I speak to at least one or two people who are having issues understanding [what it means to be] HIV-positive, because Opposite page: Ben, 2013, silver gelatin print, 8 by 10 inches. Image © Benjamin Fredrickson & Daniel Cooney Fine Art
A&U • MAY 2015
MAY 2015 • A&U
Ladyfag, 2011, Unique, Polaroid, 4 by 5 inches. Image © Benjamin Fredrickson & Daniel Cooney Fine Art
it’s not easy. It’s a struggle.” But nothing about the photographer gives away that struggle. There is also no hint as to what many may still perceive as the “look” of a person living with the virus. And speaking of today’s perceived face of AIDS, he mentions the related stigma. “A driving force behind my work is trying to break down stigma of HIV and AIDS, and within the gay community, because, as a queer man, I’ve experienced so much stigma before and after [my diagnosis].” He pauses, and then goes on to talk candidly about his feelings and fears associated with his seroconversion. “When I tested positive, I was very vain. I thought, my face was going to sink in.” But those and other fears started to subside only after his speaking with doctors and meeting others who were also living with the virus. Only then he realized that some patients have side effects, while others don’t. “There’s no ‘look’ to HIV/AIDS,” he says. “It’s not solely a gay thing. But for whatever reason that’s been stigmatized, and it’s a lot to bear. It creates stigma within the community, to the point that people don’t want to come out.”
Coming out is intuitive. It depends on many factors, and can cost someone his or her job. He has become comfortable talking about his HIV status. (It does get easier, talking about it, he tells me.) Also, as a photographer, as an artist and activist, he’s eager to share his story, to show others that there is hope, and, especially that, in this day and age, people can live a long and healthy life while living with HIV. “It’s not a death sentence [anymore],” Frederickson adds. “That’s the beauty of it. I know people who tested positive in 1986, and they’re still alive and healthy. And that’s really inspiring.” People, and their stories, inspire his photography, too. Starting out at a time before Grindr, he’d find models on-line or through word of mouth. What he loves about photographing creative individuals in particular is that, as he captures them on film—he still shoots film, using medium or large format cameras—he also gets to see their artwork, and learn about their creative process. Fredrickson photographed fashion consultant and designer Andre Walker for Garmento, a fashion journal. “We did
the shoot in his home, in Brooklyn,” the photographer recalls. “The best part of this shoot was getting to see his archive, because he has his archive at home. He’s a lovely and talented individual, [with] a fun personality. [He] even made us dinner after the shoot.” Fredrickson also photographed nightlife personality, Ladyfag, for Oakazine, a publication created by OAK, a New York clothing store. The photo shoot took place on the rooftop of her apartment building, in Brooklyn. When I ask about an intriguing portrait titled Ben, the photographer explains that he had met his subject on-line. “I really liked his look and unique sense of style. I invited him over to my place, to photograph him, and he brought along the hat as a prop. I was intrigued by his butterfly tattoo. The lighting was perfect in that moment, along with his gaze and gesture of his body. I shot this with my Pentax medium format camera.” He also photographed another nightlife personality, Melissa Burns, for PIN-UP, an architectural magazine. “I worked with the talented Marco Braca, who did the hair,” Fredrickson adds, talking about the shoot. “I was a fan of Burns in 2003, when she was in an electroclash band called W.I.T. (Whatever It Takes).” So, when the opportunity came to photograph Burns, he was excited. “She exudes this female confidence that reminds me of a gay man,” he says. “What I liked about working with her was that she’s got a beautiful woman’s body, a normal body, old Hollywood.” One of his early New York portraits is of Sven, someone the photographer remembers as “a very gentle and kind person. I’ve lost touch with him, and haven’t seen him since this portrait was made.” Some may call at least part of Fredrickson’s work homoerotic. “That’s a good one,” he says, when I bring it up. “I’ve always been self-conscious [about my body],” he goes on. “As a teenager I was too skinny, kind of a late bloomer. So doing that [homoerotic] project was an exploration for me, because I was so nervous about my own body, and interested in seeing other A&U • MAY 2015
A&U Gallery Melissa Burns, 2013, Unique, Polaroid, 31/4 by 41/4 inches. Image © Benjamin Fredrickson & Daniel Cooney Fine Art
shapes and sizes, and it really helped me apartment with fabric scraps that I had connect with my own self and sexuality.” found at the store. I took the updated and That kind of photographic self-exmuch more fashionable bottle to a photo ploration translates, at least in part, shoot, and had a model pose with it.” into his series of self-portraits. He finds it important, as a photographer, to be able to look at your own self through your own lens, to capture yourself through the same lens that you capture your subjects. His photographic work also documents his journey through life before and after his diagnosis. While people always fascinated him, there are times when his own empty medication bottles become sources of inspiration. “I had been taking medication for some time,” he Andre Walker, 2012, black and white silver gelatin print, 8 by 10 explains, talking inches. Originally published in Garmento #3. Image © Benjamin about his Atripla Fredrickson & Daniel Cooney Fine Art photograph. “One day I decided to ‘customize’ one of the empty Atripla bottles that I had lying around the MAY 2015 • A&U
Afterward, he began hanging on to all his empty bottles of medications, planning to use them in future photo shoots. But it never happened. Instead, he ended up recycling all the empties when he moved into a new apartment. Looking at this photographer’s work so far, one cannot help but wonder about where the photographic journey will take him next. “I’m an HIV-positive individual who happens to be an artist and photographer,” Fredrickson answers. “My personal work, for the past ten years, has been about this journey.” Nowadays he finds himself in a healthier place—emotionally and physically—a change that translates into a shift in his work. “I’m still going to photograph intimacy,” he says, “but maybe it will be more intense. And that’s the beauty of it. Just talking about my work, right now, I feel that everything is snowballing, and I’m happy to be able to grow and appreciate all these amazing things that are happening... and hope that they keep happening. After all, it’s not about perfection, it’s about making progress.” For more about Benjamin Fredrickson, visit: www.benjaminfredrickson.com. The artist will be part of “Interface: Queer Artists Forming Communities Through Social Media,” which runs from May 15 until August 2, 2105 at Leslie-Lohman Museum of Gay and Lesbian Art. Alina Oswald is Arts Editor of A&U.
A D VERS E E F F E C TS
Healthcare & HIV Advocates Accuse Insurers of Discriminatory Pricing by Larry Buhl
healthcare and consumer advocates are praising recent promises by some health insurers to lower the out-of-pocket costs for HIV medications, but they’re not breaking out the champagne just yet. In March, Coventry Health Plan announced that it would dramatically reduce out-of-pocket costs for HIV medications in individual plans purchased on Health Insurance Marketplaces established under the Affordable Care Act (ACA). The change, starting June 1, will drop out-of-pocket costs for HIV medications from almost $1,500 a month to $5–$100 per prescription. Coventry’s price reduction was in response to pressure from requests from HIV/AIDS patient advocates, including AIDS Foundation of Chicago (AFC) and AIDS Legal Council of Chicago (ALCC). In December 2014, AFC released an analysis of plans offered by Coventry and other companies on the Illinois Health Insurance Marketplace. The analysis showed Coventry and two other plans placed all commonly-used HIV medications on specialty tiers, an industry practice known as adverse tiering, which in effect makes medication unaffordable for people living with HIV. AFC and ALCC also said that adverse tiering may deter people living with HIV from enrolling, which is, in effect, discriminatory. Aetna, Coventry’s parent company, quickly followed suit, announcing that effective June 1, its oral HIV medications would be re-classified and placed on either generic or non-preferred brand tiers, and patient cost-sharing for the products would be fixed dollar copayments of between $5 and $100 after deductibles are met. New HIV drugs will be placed on their respective tier as they come onto the market. When asked whether Aetna would also lower prices and co-pays on top tier medications for other chronic illnesses, a spokesman
from Aetna told A&U that the company routinely evaluated plans and formularies “to ensure they align with the current standards of care and deliver the best value to our customers.” As far as HIV meds go, Coventry and Aetna are doing the right thing, says John Peller, CEO of AIDS Foundation of Chicago. But he adds that other companies have not yet followed suit, and that insurance companies might keep using loopholes in the ACA to implement policies like adverse tiering until
the federal government puts some consistent national policies on specialty medications. “Five years after the ACA passed, the federal government still had not released the definition of discrimination,” Peller tells A&U. “Section 1557 of ACA says plans can’t discriminate on basis of race and health and disability but they have not defined what discrimination looks like in a health plan. We think we are seeing a clear case of discrimination [through adverse tiering].” Consumer advocates say people who live in states with many choices of insurance companies are lucky, but those living in states and areas with few options may have to pay exorbitant rates for meds. Deterring the costliest patients Healthcare advocates say insurance companies can get away with discriminatory drug pricing, for now, due to
vague wording in the Affordable Care Act, or Obamacare. Before the ACA went into effect in 2014, many people with HIV who needed individual coverage couldn’t get a plan at any price. Luckier ones were accepted to plans with onerous premiums. Now, insurers have to take anyone who can pay, and in states where there’s robust competition and subsidies from Medicaid expansion premiums are often significantly lower than privately purchased plans before 2014. But there is no specific provision in Obamacare that prohibits insurers from charging whatever they want for medications. And that’s where, advocates say, insurers will keep finding ways to gouge their customers and deter the costliest— in other words the least desirable—customers from signing up. A study released in March in the New England Journal of Medicine concluded that some insurance companies are setting the price of HIV meds high to make their plans less welcoming to patients with chronic conditions, including HIV/AIDS. The study’s researchers at the Harvard T.H. Chan School of Public Health, used healthcare.gov marketplace to analyze forty-eight health insurance policies across twelve states. Combing through the fine print they found that, in 2014, twelve out of forty-eight policies covered nucleoside reverse-transcriptase inhibitors and generic versions in tiers with at least a thirty-percent co-pay. Some policies did not cover HIV/AIDS drugs at all. Their calculations showed that the average annual cost for a customer per HIV in the twelve plans was more than triple what customers in the other plans paid, $4,892 compared with $1,615. The researchers also found that premiums in plans with the highest out-of-pocket costs for HIV drugs were lower than other plans, but they estimated that anyone on HIV meds would still pay an average of $3,000 more each year. A&U • MAY 2015
Doug Jacobs, a med student at the University of California, San Francisco, and co-author of the study, says that insurers have long used formularies, lists of covered drugs, and high out-of-pocket costs, to steer patients toward generics or medications with a more favorable price, but he believes that his research shows formularies can also be priced to ward off people with pre-existing conditions. “Historically insurance companies put premiums at unaffordable levels for those most at risk of needing expensive medications and procedures,” Jacobs says. “Now that the ACA prevents companies from doing this, and a huge amount of people are eligible for affordable health care. Now insurers are using different ways to discriminate on the basis of health status, and adverse tiering is one way.” Jacobs adds it’s not just the pricing structures that need to be reevaluated, but the lack of transparency around drug pricing that causes people to get lost in the fine print of healthcare.gov or experience sticker shock well after they’ve met their deductibles for the year. “There is a link on healthcare.gov to the formulary so customers can see the drug tier, but it doesn’t say what the drug tier means. Tier four can correlate to a fifty-dollar copay, or could be fifty percent co-insurance. To find out they have to go to Summary of Benefits and Coverage, which may say they’ll have a fifty percent co-pay, but that still isn’t helpful. It’s fifty percent of what? Insurance companies don’t publish the cost of the drug. Consumers have no idea what they are expected to pay.” Jacobs and his co-author noted that adverse tiering strategies can also be used to discriminate against any patients with chronic expensive-to-treat illnesses, including cancer, rheumatoid arthritis, and diabetes. Profit motive Insurers’ pricing and payment obfuscation is deliberate, and as is every new provision, a way of making sure they continue to boost profits, according to Consumer Watchdog a consumer information group based in Santa Monica, California. In December Consumer Watchdog filed a lawsuit against Aetna alleging that the company’s mail order requirement for drugs puts patients’ privacy at risk, is unreliable, and violates the ACA by discouraging people with HIV and AIDS from signing up for the company’s insurance. In recent years Consumer Watchdog filed similar lawsuits against United Healthcare and Anthem Blue Cross of California. Both cases were settled, and those insurers now allow customers to opt out of MAY 2015 • A&U
the mail-order requirement. Jerry Flanagan of Consumer Watchdog is the lead attorney for the Aetna lawsuit, and he tells A&U that in-house mail-order drug policies, like adverse tiering, are new ways insurance companies can maximize profits without raising premiums. “Insurance companies don’t like to explain what they’re doing, and when they do tell you, it’s usually along the line of ‘we’re raising your rates because medications are expensive.’ There’s a kernel of truth because specialty meds the class of drugs to treat chronic illnesses is a big cost driver. “But at the same time the companies are complaining about the high cost of specialty meds to customers and regulators, they’ll brag to their shareholders that by moving HIV meds to an in-house mail order company they’re going to make a whole bunch of profit.” Some of that profit is enabled by a new middleman, the Pharmaceutical Benefit Manager or PBM—an in-house division of the insurance company that works out the deals with the pharmacies, determines what the charges will be, issues drug enrollment cards, and handles mail order. “In the United Healthcare suit we quoted out of their statement to shareholders that they expect to see huge profit growth from moving specialty meds to their PBM,” Flanagan tells A&U. “It’s the same with Aetna. They want to tell that to Wall Street so analysts say thumbs up on the stock, while to the public they wring their hands over the cost of medications.” The theory is, mail order plans save money, at least for the insurer, by cutting licensed pharmacists out of the equation. But for HIV-positive patients like Jim Ballard, mail order saved him nothing, and it complicated his healthcare. Ballard, a retired real estate attorney, was a party to a class action suit against Aetna’s mail-order mandate and tells A&U that the plan may have saved money for someone but was downright dangerous for the customers. “Meds weren’t being delivered, medicines that had to be refrigerated were left on doorsteps or destroyed and the company refused to replace them. It was essentially your fault as the receiver of the drugs to make sure you got them.” Just as troublesome, Ballard says, was the lack of conflict checks with mail order. “They wanted you to obtain the expensive HIV meds from the mail order, but if you were on other medications not on that list you didn’t have to go through mail order. When you got sick it’s hard to run your own conflicts check. You didn’t talk to a pharmacist, you talked to someone in cube 23 B
and you can be on hold for thirty minutes.” Flanagan says, in addition to demanding more stringent federal oversight, consumers have another potent weapon against price gouging and policies that may adversely affect those with HIV and other chronic conditions: the bully pulpit. “Companies don’t want to look like they’re beating up on the HIV/AIDS community,” he says, adding that public attention to adverse tiering led to Coventry and its parent company Aetna to reverse its policies. In addition to announcing lower prices for HIV meds, Aetna now allows patients to opt out of the mail order channel. Regulators to the rescue Adverse tiering may be on its way out by the end of the year. In February, the federal Centers for Medicare and Medicaid Services issued a rule for 2016 that prohibits plans placing “most or all drugs that treat a specific condition on the highest cost tiers” and that charge more for single-tablet regimens than for treatments that require patients to take multiple pills. Price structures may become more understandable as well. In December, 300 patient groups sent a letter to US Health and Human Services Secretary Sylvia Burwell demanding increased protections for patients with policies on the exchanges under ACA. In March, Burwell responded by mandating that all 2016 health plans must submit their formulary information and notice of benefits and payment parameters in a clear, understandable way. There have been Congressional bills, like the one sponsored by Rep. David McKinley (R-WV) in 2013 that would limit out-of-pocket costs for medications. But most consumer advocates and patient groups see little chance of any reforms passing in the current Congress. In the meantime, consumers are on their own to figure out which policies pay how much and under what conditions. Flanagan tells A&U that if and when adverse tiering goes away, it won’t be the last time consumers will face health insurance pricing schemes aimed at increasing the companies’ bottom line. Ballard’s advice to people with HIV is to “get a good lawyer” to figure out policies and protect themselves from price gouging. That an attorney has to say that he needed a lawyer to understand the fine print of his own policy, he admits, says a lot about the health insurance industry. Larry Buhl interviewed Dining Out For Life spokesperson Daisy Martinez for the April issue.
ACTOR JAY ELLIS TAKES A DEFENSE POSITION AGAINST THE EPIDEMIC, TACKLING THE DISEASE THROUGH HIS CHARITABLE EFFORTS by Dann Dulin Photographed Exclusively for A&U by Sean Black
A&U • MAY 2015
Jay Ellis is proud to be a LifeRider.
These were Jay’s Tweets as he cruised on his Harley last summer in Kiehl’s LifeRide. The twelve-day, 1,600-mile trek from Milwaukee to New York City, with stops in Chicago, Detroit, and Cleveland, raised $170,000 for amfAR. It was Kiehl’s fifth LifeRide which was led by Kiehl’s USA president, Chris Salgardo. Since its inception, Kiehl’s LifeRide has contributed over $1 million to AIDS research.
“It was an honor to ride with Jay,” remarks Chris. “He has such a strong commitment to HIV and AIDS education, and gave up his personal time to ride through the country to spread the message. I’m always impressed by people who are trying to take some action for a cause they believe in and I know HIV and AIDS awareness is a personal issue for him. When AIDS has affected you personally, it’s hard not to do something actionable. I have the utmost respect for him.” Jay believes that noise is Chris’s motivation for the LifeRide. Create noise in order to bring attention to AIDS. “Nearly fifty percent of those inflicted with AIDS are African Americans,” notes Jay. Indeed, the CDC reports that African Americans are most affected by HIV when compared to other ethnicities; the rate of new HIV infections among African Americans is eight times that of whites, a stark contrast considering that African Americans make up roughly thirteen percent of the population. Gay and bisexual males aged thirteen to twenty-four suffer the greatest impact. An estimated one in sixteen African American men and one in thirty-two African American women will be diagnosed with HIV infection, according to estimates.
These staggering statistics compelled Ellis to join Keihl’s LifeRide. It was both a challenge and an opportunity. “It’s not so tough, especially because you’re doing it for something bigger than yourself,” he says. “Those few days of discomfort are worth it. And it’s a great group of genuine, easy going, and caring people. On long days, everyone brings each other up when we get tired.” The epidemic first entered Jay’s awareness at the age of eight, when his uncle died of complications from the disease. “I was really young but I knew that it was incurable, untreatable—and a killer…” Jay recalls that his uncle was an upbeat person. “When I was around him he was always smiling and gregarious. My first visit to San Francisco was when he was living in the Bay Area and he took me all over the city. He was so proud to show it off. I recall seeing the Golden Gate Bridge, Alcatraz, the WWII decommissioned war ship, the SS Jeremiah O’Brien and just roaming the city’s local neighborhoods, from Chinatown to the Haight and everything in between.” Shortly before his uncle passed, Jay and his family visited him in the hospital. Jay knew that his uncle was sick but, at the time, didn’t understand the cause. “The physical toll it took on his body was right
in-your-face,” exclaims Jay, recounting the sojourn. “He was so frail and weak, but his lighthearted personality was still there. He told jokes and kept us all laughing. He told us stories about my dad and his brothers from when they were kids; even stories of my grandmother. [He was Jay’s great uncle.] I’d Iike to think he was just enjoying having all his family around him again, but sometimes I wonder if he was trying to soften the situation.” Jay still grieves for his uncle. “I looked up to him and wished I could have learned more from him. He was so smart! My grandmother always said he was the fun-loving mischievous one when they were growing up and as a kid I loved that about him. I was also mischievous. I wish he had been able to live out his dreams, like I’ve been able to live out mine.” Though his acting resume is packed with appearances on such popular shows as NCIS, Grey’s Anatomy, How I Met Your Mother, and Masters of Sex, Jay’s probably best known as rookie wide-end receiver, Bryce “Blueprint” Westbrook, on BET’s The Game. Like Jay, his character is educated, a skilled sportsman, and the product of a military family. The self-ascribed “Army brat” (he was born on an Air Force base, lived in Germany and the Philippines, and A&U • MAY 2015
attended twelve schools in thirteen years), Jay first appeared in season six, two years ago. But it took eight auditions before he landed the role! “When my manager called I was on a ladder putting a banner up on the wall in my new Pilates studio,” explains Ellis, a certified Pilates instructor and co-owner of Body + in Lafayette, Louisiana. “When I answered the phone, he immediately put me on hold, so I went back to what I was doing. I was really into making this banner look nice and forgot about the call. Then he came back on the line and as soon as he said, ‘Congratulations you got the part,’ my heart raced and my hands just went flying. I fell off the ladder!” His friend heard the crash and dashed into the room. Jay shoutMAY 2015 • A&U
ed, “I’m okay. Get the phone! Get the phone!” Since he first appeared on The Game—in a nude scene—Jay soared to heartthrob status and has become an integral part of the series. Before Hollywood, though, Ellis was an athlete and a model. The six-foot-threeand-a-half-inch basketball star was offered a scholarship to Concordia University in Portland, Oregon. After graduation, he completed an internship with the Portland Trail Blazers. Jay became a model while attending Concordia and appeared in ads for Abercrombie & Fitch, The Gap, Diesel, and Air Jordan. The idea of modeling came to him when his friend earned a whopping one hundred dollars for a one day modeling
job. Upon meeting his friend’s agent, Jay self-assuredly declared, “I want to be a model.” The agent responded with a loud sarcastic laugh, but he saw Jay’s potential. The very next day, he snagged a modeling job! His parents, Paula and Wendell Ellis (Jay is a Jr.; his birth name is Wendell), nurtured his tenacity and spirit. He was an only child and had to adapt to diverse living situations while growing up. Not surprisingly, Jay was the target of some ribbing from his teammates, who labeled him, “pretty boy.” Deciding not to pursue a pro sports career, he moved to Los Angeles and became a retail executive, opening such stores as True Religion and Kitson. After work, he diligently attended
A&U • APRIL 2015
ELLIS’S (END) ZONE What do you think happens after we die? I hope one hell of a party with the people we love! What do you do when you get depressed? Watch Frozen—but don’t tell anyone. What’s your favorite city in the world? That’s really tough. Paris, Como (Italy), and home sweet home…Los Angeles. Where are you dying to travel that you haven’t been? There are so many places. Top three: Koh Samui, Thailand; Istanbul, Turkey; South Africa. I have wanderlust, so you can literally send me anywhere! Have you ever been starstruck? All the time! But the first time was years ago at a restaurant in Los Feliz called Little Dom’s. Garth Trinidad from KCRW was sitting in a booth behind me and I flipped out! I just couldn’t approach him…. How many times during the day do you look at yourself in the mirror? As few as possible! [He giggles.] I know what I look like and get tired of looking at myself. Briefs, boxers, sockjock, or thong? It depends on the day and the occasion, but usually boxer briefs. Nothing when I’m at home. Whom do you consider to be a hero in the HIV/AIDS epidemic? Everyone who is a part of the cause and fight to cure, treat, educate, spread awareness, and end HIV and AIDS in the world. Out of the many people you have met is there one in particular who stands out the most? Charles Orgbon, a youth environmentalist from Atlanta, GA. He was not only running a national recognized non-profit that helped other youth fund initiatives in their cities, but at seventeen years old, he had already been a Ted Talk speaker. Whom would you like to meet that you haven’t met yet? Elon Musk, Richard Branson, Oprah, Will Smith, and Brad Pitt.
MAY 2015 • A&U
acting class and learned the craft. “I’ve always tried to support or volunteer whenever I could,” he points out. “The AIDS Walk was the first major event that I ever participated in.” Jay also worked with AmeriCorps for two years, beginning in the spring of his first year at college, and completing the program on graduation. Founded in 1994, it’s an initiative of the Corporation for National and Community Service (CNCS) that engages adults in community service in the fields of healthcare, environmental protection, public safety and education. Jay worked with middle school students. “I loved it!“ he shouts, flashing that familiar, infectious smile. “It was so inspiring to be around these kids. They have no filter. If they don’t like your shoes or your haircut, they tell you.” He breaks into a reminiscent laugh. “But to watch a shy fifth grader begin the program and then leave for high school as a confident and academic-achieving student…,” he stops, momentarily grappling with his emotions then continues, “is almost surreal.” He clears his throat. “I literally watched some of those kids grow up.” Ellis continues to work with youth, albeit, in a slightly offbeat manner. Last December, Jay served as an event chair for amfAR’s generationCURE Holiday Party in New York City. Formed in 2011, generationCURE is a small group of young professionals who are dedicated to helping amfAR in its search for a cure for HIV. In 2012, they raised more than $50,000 for a new cure-focused research project. In all, they’ve raised more than $150,000, hosting events in Washington, D.C., and Los Angeles. From Eric Muscatell, amfAR’s V.P. of Development, “We were really grateful to have Jay on LifeRide last year. In spite of his hectic schedule during the summer, he still took the time to join us on this thousand-mile journey—which was oftentimes grueling and exhausting—yet he had boundless energy and a generous spirit. He’s also a really funny guy; he had me in stitches nearly every mile. When you’re fighting something as serious as AIDS, and covering hundreds of miles a day on a bike under the August sun, it’s important to have a guy like Jay along!” Another cause close to Jay’s heart is the Armed Forces. “A long line of family members have served,” Jay reports proudly. “My parents were always big on giving back even when we didn’t have the means to give anything other than time,” he explains. “I’ve been fortunate enough to be in a position to give, and I wouldn’t be here today if someone had not volunteered their time in an after school program or a youth center when I was a kid.”
Pausing momentarily, he remarks in a staccato liturgical tone, “Education. And. Awareness. These are two key factors in the fight against HIV infection. We can’t be afraid to have the conversation. Ask! Get tested!” He stops and reflects on this statement. “Humans, for the most part, fear the unknown. It’s our nature.” Jay’s voice rises. “We have to do a better job of reaching out to the youth. HIV/ AIDS awareness needs to be discussed in high schools, in youth programs, and at community centers. Everyone must get tested.” “My first test was back in 2004 when I moved to L.A.,” he offers, in a boyish manner. “The experience was a bit unnerving, but learning that I tested negative was very much worth the few nervous minutes.” Single for two and half years, when he dates, he’s direct. “Open communication is the only way to go. I just ask!” raves Jay with gusto. “It’s best for both to know their status. There’s too much going on out there not to be upfront and honest.” Despite the demands of his acting career—Season 9 of The Game premieres in June—Jay maintains a rigorous workout program six days a week. “To beat monotony, I’ll jump rope, do Yoga, surf, or simply take a hike—and I meditate twice daily,” he expounds. Jay also has a hobby. “My sneaker collection is probably what Michael Jordan’s trophy room is like to him. I really love random shoes. I still have my high school shoes which I pull out every once and a while.” In fact, Jay was wearing “Jump” sneakers at the finale of the LifeRide, The World AIDS Memorial Quilt Dedication, on New York’s Governor’s Island. Jay was one of several LifeRiders who read the names on the Quilt of those who died from the disease. “The event was insanely powerful,” says Jay delicately, taking a forceful breath then expelling a heavy sigh. “To see such a small piece of the AIDS Quilt and to realize not only does that piece represent a life, but that the piece is only a small part of the whole quilt, is intense. After the reading, I was speechless. It’s heartbreaking and inspiring at the same time. “The little things we do can help generations.” Does Jay plan on joining the LifeRide again this year? “Absolutely!” he revs passionately. “As long as Chris will have me, I’ll be there. We’re a bike gang to kick AIDS!” Keep up with Jay at www.jay-ellis.com. Post-production by Eve Harlowe. Visit her website: www.EveHarlowe.com. Dann Dulin interviewed Sharon Leal for the February cover story.
Southern Exposure The Southern U.S. is Now the Region Hardest Hit by HIV/AIDS—What’s Really Going on Down South and What Needs to be Done to Turn the Tide? n the 1980s, the AIDS epidemic in the U.S. burgeoned in our biggest cities— Los Angeles and New York. Now more than thirty years later, America’s highest-concentrated population centers are still heavily impacted by HIV/AIDS. But in recent years, what’s happening in the rural Deep South may be the most alarming in the nation, and the situation may get even worse before it gets better. “It’s a shift that happened at least five years ago, and we are trying to call attention to it,” says Carolyn McCallaster, clinical professor of law and director of the Southern HIV/AIDS Strategy Initiative (SASI), a broad-based coalition of HIV/ AIDS advocates and their supporters led by the Duke AIDS Legal Project at Duke University School of Law in North Carolina. A research project, HIV Diagnoses, Prevalence and Outcomes in Nine Southern States, was conducted by SASI in collaboration with the CDC and published in 2014 in the Journal of Community Health. Below is a snapshot of the results. • As of 2011, thirty-eight percent of those diagnosed with HIV in the U.S. lived in the nine Deep South states (Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee and Texas), even though this area only comprised twenty-two percent of the U.S. population. • Overall, five-year survival rates among
people diagnosed with HIV or AIDS was lower in this region than in any other U.S. region. • Fifteen percent of those diagnosed with HIV in the region had died within five years of diagnosis. • Twenty-seven percent of people diagnosed with AIDS in the region had died within five years of diagnosis. These “third world numbers…are just striking,” McCallaster declares. “In this day and age when you have treatment available for people, they should be living a normal life expectancy with HIV.” So why aren’t they? Stigma, the ubiquitous deterrent to fighting the spread of HIV, may be even more pervasive in the South than in other parts of the U.S. “We are in a part of the country that is the Bible Belt. There are layers of stigma that people with HIV experience,” she adds. South Carolina state Rep. Joe Neal told the Washington Post, “There are those who see HIV/AIDS as a punishment from God. There are those who simply don’t understand. As a result, this disease creates a stigma that creates a barrier to compassion and, frankly, treatment.” For women and mothers, learning how to live with HIV brings its own set of challenges. “When I was diagnosed in 1994, there was nothing in my community that addressed me as a woman—no programs or services out there
that addressed me as a mother,” recalls Catherine Wyatt-Morley, fifty-six, founder and CEO of the Nashville-based organization Women On Maintaining Education and Nutrition (W.O.M.E.N.). After learning she was HIV-positive, Wyatt-Morley says her husband, who tested positive at the same time, turned to alcohol for solace and “emotionally checked out” of the marriage. She lost her job, was kicked out of her church, and became alienated by the people she thought were her friends. At one point, she was homeless. “All of my resources, all of my anchors, my foundation, were all removed from me. It was a very dark time, she tells A&U. “Stigma associated with HIV has not changed. It has embedded itself even more in the fabric of communities of color.” McCallaster adds, “Once tested, the stigma keeps people from getting into care. We hear stories of people being afraid to go into the local HIV clinic because they don’t want anyone to see them there.” Jonathan Ferguson, twenty-five, has been living with HIV since 2013. He recently relocated from Philadelphia to his home town of Columbia, South Carolina, where he quickly realized accessing programs and services for young gay men wasn’t going to be easy. “Homophobia is still an issue here,” he says. “It’s a taboo topic. I know people that are still closeted, not really telling their family, sweeping things under the rug.” He says the mindset in the community is, “We know about this [men having sex with men], but we don’t A&U • MAY 2015
illustration by Timothy J. Haines
by Chip Alfred
want to talk about. It’s the same with HIV.” Having come from a large urban center like Philadelphia, Ferguson found there were far fewer choices for HIV treatment and services, and with no car and a limited public transportation system, those services are harder to access. “In rural parts of our states, people have trouble getting to their appointments,” remarks McCallaster. Ryan White funding, she points out, pays for gas, but the individual would need to have a car or find someone with a car who won’t ask too many questions. In North Carolina, as in much of the South, there are no HIV specialty clinics in rural areas, so some patients travel to university hospital medical centers like Duke or University of North Carolina for their care. These medical centers provide shuttle van service for people who need it, but each patient ends up having to spend an entire day just getting to their doctor and back. McCallaster notes, “People are missing appointments. Getting them into care is happening, but what’s not happening is keeping them in care.” And in places without expanded Medicaid, linkage and retention to care may become even tougher. “A higher percentage of people with HIV are poor, and they would qualify for
Medicaid if they live in a state with Medicaid expansion, yet every single Southern state has failed to expand Medicaid. There’s going to be a wide gap between the states that provide excellent medical care and the states that aren’t going to be able to.”
viral suppression, or encourage friends in their social network to get an HIV test. The bottom line, says Wyatt-Morley, is empowering people affected by HIV to become a part of the solution. “The resources are not following the demographic. We need to bring real people into the decision-making process. There are not enough of us at the table who are working on the grassroots level.” McCallaster believes it’s important to focus prevention efforts on the specific needs of the targeted communities. “One of our advocacy points is that one size does not fit all. If you’ve got a program that’s working in New York, that’s not necessarily going to work in some of our regions.” Ferguson says he’s still adjusting to life with HIV in the South and hopes he can be a role model for others. “I’m young; I’m a person living with HIV and I want to be an advocate here. I want to get the message out to the public that it’s okay and that there are options out there. We have to put out to the community a positive view of what HIV looks like.”
“Though the situation in the South is dire, there are encouraging signs that things may be changing.”
MAY 2015 • A&U
Though the situation in the South is dire, there are encouraging signs that things may be changing. In late 2012, the U.S. Department of Health and Human Services announced that eight states, including six southern states, were awarded $14.2 million in first-year funding as part of the Care and Prevention in the United States (CAPUS) Demonstration Project. CAPUS funds are designed to reduce HIV-related morbidity, mortality, and related health disparities among racial and ethnic minorities, with a focus on funding community based organizations. Some health departments in the South are seeing success offering financial incentives for people to stay in care, achieve
For more information, visit www.southernaidsstrategy.org or www.educatingwomen.org. Chip Alfred is an A&U Editor at Large based in Philadelphia.
On the Eve of the Non-Profit’s 3oth Anniversary, Karen Pearl, President and CEO of God’s Love We Deliver, Explains Just How It’s Done by Alina Oswald
Karen Pearl, President and CEO of God’s Love We Deliver the five boroughs of New York City, as well as in Hudson County and two other sites in Newark, New Jersey. Some twenty-eight percent of God’s Love clients, today, live with HIV/AIDS. Twenty-two percent of the clients have cancer, while eight percent live with other illnesses, from Alzheimer’s disease to MS, chronic obstructive pulmonary disease (COPD), or heart failure. Volunteers prepare the food with love, but, at God’s Love We Deliver, food is also medicine. Medicine, because it helps patients manage their medications, and their illnesses. When people call to say that they’re sick and hungry, God’s Love immediately delivers a meal to them. There’s no bureaucracy. No paperwork to fill out. “Because,” Pearl says, “we really believe that being sick and hungry is a crisis that demands an urgent response.” Within ten days after that first meal delivery, the prospective clients need to submit a form from their doctor, nurse practitioner or physician’s assistant, and that form is reviewed every six months. God’s Love We Deliver has six nutritionists on staff. It is their job to get all the necessary information from clients and their doctors, in order to ensure that they offer the best meals possible, considering the client’s specific medical needs, medications, food
restrictions, and, definitely not least, preferences (such as vegetarian food), independent of their medical restrictions. When it comes to helping people living with HIV/AIDS, those restrictions and needs have changed over the last thirty years. And to some extent, these changes have followed closely the changes in the AIDS pandemic itself. “Early on in our history, our meals were designed to get people to eat as much as possible, because they were all wasting away,” Pearl explains. “Our meals were designed around two things: calories to bulk you up, and [presentation] to make it look really beautiful and appetizing, because one of the things that happened...people [living] with HIV/AIDS sort of lost their appetite. “[When] ARVs came onboard, a couple of things changed. More people were living better and longer, [and] didn’t need us as much—that’s a good thing. And the nutritional needs of those who did need us did change, [too]. They, now, needed to start eating a balanced meal that was less about bulking up and more about sustaining people as they lived and aged. “And now, even a few more years later, that people have been on ARVs for twenty-odd years, now it’s changed [again, in]
photo by Janette Beckman
hirty years ago a hospice volunteer by the name of Ganga Stone was asked to deliver some groceries to a patient living with AIDS. She did. The following day she stopped by the man’s place again, only to find the bag of groceries untouched, still sitting on the counter. At that moment she had an epiphany. Stone realized that when people are too sick and weak to shop or cook for themselves, what they really need is not a bag of groceries, but a cooked meal, one that looks, smells and tastes appetizing, just like a meal their mother or grandmother would prepare. So, she took upon herself to help the man and bring him restaurant prepared meals, left over at the end of the day. One day she was in the neighborhood when she met a minister. He’d seen her before, and asked what she was doing. To her answer, he replied, “you are not just delivering food...you’re delivering God’s love.” And that’s how God’s Love We Deliver, cofounded by Ganga Stone and Jane Best, got its name. “So, from that single act of caring, and of respect and dignity for another person, evolved God’s Love,” Karen Pearl, President and CEO of God’s Love We Deliver, tells me over the phone. “Not only did we expand in terms of numbers and in terms of illnesses that we help people live with, but also we moved from restaurant [meals] to cooking our own meals, to our meals being nutritionally based and medically tailored for the specific circumstances of each client.” God’s Love is unique in that way, and many other ways. Starting as an HIV/AIDS organization in 1985, today the organization, which is not faith-based, prepares and home delivers over 1.3 million meals per year—that is 5,000 meals a day—to clients located in
A&U • MAY 2015
photos by Christian Grattan Photography
God’s Love volunteers in the God’s Love kitchen
that there are many secondary [issues]. We call them co-morbidities. We’re finding that we’re working with people living with HIV/ AIDS who also have heart disease, diabetes, [and] renal problems. Their meals, today, have less to do with their HIV, and more to do with [related] co-morbidities.” Over the years, God’s Love We Deliver started serving people living with health issues other than HIV/AIDS. And, from helping individuals living with cancer or heart disease, God’s Love has learned more about how to do the same for HIV patients who, over time, have developed cancer or heart disease. In addition, individuals who have been on ARV medications for a very long time may have developed neuropathy; therefore, unable to handle heavy pots and pans. Hence, they may also end up needing the help of God’s Love We Deliver. Also, while today’s focus is on getting everybody to be virally suppressed, truth is that that’s not always the case. Some people may struggle with their medications, and end up needing help. Listening to Karen Pearl explain what it really takes to deliver God’s love, day in and day out, I find the process quite complex, even daunting. “It’s complex, but also very simple,” Pearl says, when I mention it to her. “And the simple part is that food is love,” she adds. “God’s Love will always be there for people who are sick, and can’t shop and cook for themselves, when [they] don’t have, not just food, [but also] nutrition.” MAY 2015 • A&U
For three decades, God’s Love has delivered food and hope to many, many people. “I’m so grateful, because I couldn’t feed myself, I couldn’t cook...I couldn’t do anything. [and] I was so hungry,” God’s Love client, Dahlia, says. “Having the food cooked for me and my child, and delivered to my door has changed my life. I can feel myself getting a little bit stronger, every day.” To Paul, another client, the food tastes like a home-cooked meal, prepared with tender loving care. “I do feel loved and cared for, like my mother or grandmother is looking out for me, and making sure that I eat well,” he says. “It’s made me feel loved, energized, [and] healthy. It made me feel like my old self.” This May God’s Love We Deliver plans a small thirtieth-anniversary celebration with the staff, volunteers, and closest friends. “Probably we’re going to have some special people in the kitchen working that day, going out on deliveries,” Pearl says. A much bigger celebration is only a month away, when God’s Love We Deliver (now operating from a temporary location in Brooklyn) will be moving back to its newly renovated and expanded home, in SoHo, from where it will be able to continue—and expand—its work. “Our board, staff, and volunteers have always been dedicated and will continue to be dedicated to finding every single person in our service area who needs us,” Pearl says, mentioning future goals for the organization. “Unfortunately people who are sick are
often the people who’re least visible, because they can’t really get out very much. So that’s our goal, to find them through our outreach and other community organizations, hospitals and treatment centers. We’re going to do everything we can to make sure that nobody who’s at home, sick and hungry is going without home delivered meals, if they need it.” There are three ways in which the rest of us can help deliver God’s love to those who need it the most. “One is to do exactly what [A&U] is doing, which is to be an ambassador, tell people about us,” Pearl explains. Second is to volunteer, and join GLWD’s 8,000 volunteers, some working there for twenty years, others for only one. Third is to donate, thus help God’s Love keep delivering love, food, and also hope. “We completely embrace the hope for an
Client Chai with friend AIDS-free generation,” Karen Pearl says, “and we’ll always be there for people who’re living with HIV and AIDS, and who need our help. The core operating principle is that we will never turn anybody away who needs us. If that changes tomorrow or in a year or ten years, we will be there, however long it takes.” To find out more about God’s Love We Deliver, visit online at www.godslovewedeliver.org, or glwd.org. Alina Oswald is Arts Editor of A&U.
It is hoped that the offspring of these modified cells will also not contain CCR5 and will create a strong barrier to HIV infecting new cells. The clinical trial will be conducted at the City of Hope medical center in California.
FDA Approves First Kick and Kill Trial The National Institutes of Health’s Division of AIDS (DAIDS) has pledged $6.6 million for a Phase IIa adult eradication study of AGS-004 combined with vorinostat, an HDAC inhibitor. Kick and kill is a potential eradication strategy that uses a drug, such as an HDAC inhibitor, to activate resting HIV in viral reservoirs, drawing it into the blood where another drug or strategy can then kill off the infected cells. AGS-004 is an immunotherapy that is personalized to each patient. A small amount of blood is drawn along with dendretic cells that are manipulated and programmed to recognize and attack HIV. The programmed dendretic cells are then added to the blood that was drawn and administered back into the patient by intradermal (under the skin) injections. AGS-004 produces a durable memory T-cell response to HIV, allowing the immune system to quickly recognize and eliminate HIV. Further details of this study are yet to be announced.
Blocking HIV Viral Expression Whereas kick and kill strategies seek to wake up latent HIV hiding out in viral reservoirs, scientists are also working on preventing these cells from replicating after being reactivated. Researchers from the Scripps Research Institute in Florida sought to prevent latent HIV from replicating after escape from viral reservoirs with the use of a drug called didehydro-Cortistatin A (dCA), a steroid alkaloid. Data presented at the 2015 Conference on Retroviruses and Opportunistic Infections (CROI) discussed a preclinical study of dCA, which inhibits Tat, an HIV protein necessary for HIV to replicate. Researchers performed laboratory studies where dCA was introduced to latently infected cells from people on ARVs with suppressed viruses. The drug was found to reduce the production of HIV RNA. Researchers stated that “dCA treatment combined with ART may inhibit and persistently abrogate residual HIV production from cellular reservoirs in blood and tissues from virally suppressed subjects, block viral reactivation, reduce reservoir replenishment and may ultimately decrease the size of the latent reservoir.”
Another Trial for Sangamo In March of this year, the FDA approved a Phase I clinical trial to further test a gene therapy made by Sangamo Research. The gene therapy uses zinc finger nucleases to edit CCR5, the main doorway HIV uses to infect cells. This strategy is somewhat similar to the process used to cure Timothy Ray Brown (the only person presently cured of HIV) except without the stem-cell transplant that Timothy endured. Unlike AGS-004, Sangamo’s drug is a potential functional cure, not an eradication strategy. This means researchers don’t expect it to eliminate HIV altogether, rather they hope it will allow people to stay off of antiretroviral therapy for an extended period of time without viral rebound or further immune damage.
Early ARVs in Infants Although the Mississippi baby, once thought to have been cured of HIV, experienced viral load rebound two years after discontinuing ARVs, hope still lingers that early intervention with full ARV regimens would be beneficial to perinatally infected infants. Approximately 400 South African infants were enrolled in the CHER (Children with HIV Early Antiretroviral Therapy) trial to determine the effects of early intervention in infants. The newborns were all under twelve weeks of age. They were randomized to forty or ninety-six weeks of ARVs beginning immediately or to wait until they showed signs of disease progression before beginning therapy. Results of the study indicate that viral res-
he search for an HIV functional cure or an eradication strategy is in full throttle in 2015. New studies are in the works, numerous new grants are being awarded and lots of recent data can be found published in peer-reviewed journals and presented at scientific conferences. Here’s a few developments so far this year that have caught my eye.
ervoirs are established within the first two months of perinatal infections. Researchers also reported a seventy-six-percent reduction in mortality in those who started therapy immediately verses those who began later on. Babies treated immediately for ninety-six weeks had a substantially smaller viral reservoir or lower levels of proviral DNA. Proviral DNA began to rise when treatment was interrupted and by week 248 HIV DNA levels were similar among all groups, showing that early treatment benefit was eventually lost after treatment cessation. Reduction in the size of the viral reservoir as well as the probability of achieving an undetectable viral reservoir were greatly associated with a longer time on ARVs, younger age when beginning ARVs and longer period of time with continual viral suppression. Interestingly a higher level of cytomegalovirus (CMV) DNA was associated with a larger viral reservoir. This was also been seen in adults in a separate study. 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 • MAY 2015
illustration by Timothy J. Haines
cure research has many irons in the fire
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Larry Buhl: Why was Myanmar chosen as one of the sites? Isabelle Andrieux-Meyer: We opened this clinic in Myanmar ten years ago to treat people infected with HIV. There are four huge HIV cohorts in Myanmar and more than 40,000 people in care. In the north there is the burden of HIV/HCV coinfection of between twenty-five and thirty percent, which is huge. This means,
at the country level, there is a serious health problem that hasn’t been addressed. We are trying to understand the magnitude of the problem and design programs that are adequate for the people and respond to their needs. What are the procedures for screening and testing there? The initial screening test tells you if the patients have been in contact with the virus but doesn’t tell you they have an active hep C infection. The next step is to find out who has an active infection. You look at medical files and see who has liver disease and prioritize to go to HCV viral load testing. It is $100 per test, and the genotype test is also $100. We are assisting all people who seem to be coinfected to prioritize for viral load and genotype and starting to prepare them for treatment. In the future there will also be fibroscans to see how advanced the liver disease is. You’re prioritizing who will be treated? Right now it’s only the most advanced cases of liver disease that we can treat. The program will not function at full speed from the beginning. Globally it raises the issue of the cost and availability of the drugs. What will the treatment regimen be? This year it will be sofosbuvir-based combinations using ribavirin as soon as we get agreement from the ministry of health in Myanmar and receive the drugs bought from Gilead. In future we want a generic option for a lower price. We need quality control over generic manufacturers. We encourage them to pre-qualify through the WHO process. Will there be prevention and follow-up?
Yes, we need to be comprehensive. If you consider drug use with limited access to needle exchange programs and criminalization and limited methadone, the risk of reinfection can’t be ignored. We need to design the package of care, pre and post treatment to allow a person to remain healthy. There are many risk factors that need to be understood so that we can come up with a good treatment solution for the people. Do the countries you’ve selected to work in have any national hepatitis programs? No, but we encourage them to start. Without national commitment it is hard to move forward. In one year what do you hope you will have achieved? We would like access to as much of the DAAs as we need at affordable price and screening strategies for not only people beyond our cohorts. The challenge will be powerful financing mechanisms to allow each country to scale up and establish national hepatitis programs. Some funding mechanisms like The Global Fund will have a role to play in management of coinfected people. 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 • MAY 2015
photo courtesy MSF
ast year UNITAID funded two grants to increase access to new treatments for the hepatitis C virus (HCV) for HCV and HIV coinfected patients in low- and middle-income countries. Up to $15 million was granted to Médecins Sans Frontières (MSF), also known as Doctors Without Borders. The MSF grant will cover patient screening, diagnosis, and treatment in ten sites across India, Iran, Kenya, Mozambique, Myanmar, Uganda and Ukraine. Another grant of up to $5.2 million was committed to French NGO Coalition Internationale Sida to work with partners in Brazil, China, Ecuador, Egypt, Georgia, Indonesia, Malaysia, Morocco, South Africa, Thailand, and Ukraine. Both grants aim to provide a model for simple, low-cost care for people with HCV living in low-resource areas. Most people infected with HCV in these areas, as is the case in higher-resource countries, are unaware of their status. Testing and monitoring for HCV is complicated and expensive and require a set of initial and confirmatory tests. An RNA test is needed to confirm diagnosis and to re-confirm a cure twelve weeks after treatment with direct-acting antivirals (DAAs). I spoke with Dr. Isabelle Andrieux-Meyer, the viral hepatitis medical advisor and team lead for the MSF Access campaign, after she returned from Myanmar, where she oversaw the implementation of new viral hepatitis screening and testing procedures at a clinic. That Myanmar site, as well as the other nine sites identified for testing and treatment as part of the UNITAID grant will, she says, be a model for bringing affordable hepatitis care to parts of the world where the cost of treatment is far beyond most people’s ability to pay.
a global campaign for providing low cost hcv care rolls out
Photo : Stéphane Turcot
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Complementing Your Health explore an array of complementary, alternative & integrative options
of HIV is that it leaves patients vulnerable to opportunistic infections, making adjustments to ensure your overall health through improving stress reduction, exercise, building a social support network, and having a spiritual practice can significantly boost immune function. In fact, these actions are some of the most powerful tools a person has to impact the course of the disease.” What options are available to you in this growing medical movement? In the 2012 National Health Interview Survey conducted by the NIH, it was found that the mind and body approaches most commonly used by adults included yoga, osteopathic manipulation, meditation and massage. There is an appeal to people of all ages. Among Americans ages forty-five to sixty-four, the use of yoga increased from 5.2 percent in 2002 to 7.2 percent in 2012. Nearly 20 million adults had osteopathic manipulation and nearly 18 million adults practiced meditation. The survey results also showed that nonvitamin, nonmineral natural products remain the most popular complementary approach used by American adults. There is an emerging younger generation using alternative options as well; the survey showed that 11.6 percent of U.S. children ages four to seventeen use complementary health approaches. There is a world of options available to you. In this column, we will explore some of those options. Medicinal herbs, for one, are used by many. Herbal medicines are the tools of the trade used by practitioners of traditional Chinese medicine, naturopaths, aromatherapists and Ayurvedic doctors. In traditional Chinese medicine, practitioners see illness as arising from a block or excess in your body’s energy flow. There are a number of different techniques used to correct the flow of energy including acupuncture, Shiatsu and exercises such as Tai Chi and Qi Gong. Aromatherapy is another popular segment of herbal medicine. It uses the healing and medicinal properties found in the oils of plants. Ayurvedic medicine is one of the world’s oldest medical systems. It is based on the belief that health and wellness depend on a delicate balance between the mind, body, and spirit. Additionally, there
is naturopathy. Naturopathic practitioners see symptoms as your body’s attempt to restore balance and use a holistic approach to healing. Homeopathy is yet another modality based on the idea that the body has the ability to heal itself. Mind and body practices are another popular option for wellness and include a diverse array of possibilities. Acupuncture, massage, meditation, movement therapies, relaxation techniques, and hypnotherapy are all excellent examples. Affirmations and visualization, which is also called guided imagery, is another option often used for a healthier and more positive outlook and state of mind. While we explore these many options, remember that HIV should never be treated with alternative therapies alone. It is extremely important that you share information on your use of complementary and alternative therapies with your doctor, so that your doctor can help you determine what is safe and appropriate. After a lengthy career in the arts and LGBT activism, Robert Zukowski pursued his goal of a career in complementary and alternative healthcare. He is a New York State licensed Massage Therapist, a Certified Medical Massage Therapist and is certified by the National Certification Board for Therapeutic Massage and Bodywork. In addition to his hands-on work, he is a writer and lecturer in the field of therapeutic massage therapy. A&U • MAY 2015
illustration by Timothy J. Haines
very morning I take a probiotic and squeeze a whole, fresh lemon into my water. I keep fennel on hand to aid in digestion. My usual mind and body practices include meditation, massage and reflexology. I use aromatherapy daily and keep a list of anti-inflammatory foods on the refrigerator to add to my shopping list. These are only a few of the complementary, alternative and integrative practices that are a part of my own overall wellness regimen. The terms “complementary and alternative medicine” and “integrative medicine” are clearly visible on the horizon of wellness. The term “complementary” is often used to describe a non-mainstream health care approach used in conjunction with conventional medicine, while the term “alternative” refers to a non-mainstream approach used instead of conventional medicine. Integrative medicine is often referred to as a “whole person,” collaborative approach that addresses the physical, emotional, mental, social, spiritual and environmental factors that affect a person’s health. According to the National Institute of Health (NIH), nearly forty percent of Americans use healthcare approaches developed outside of conventional medicine. It is no surprise that the conventional medical community is beginning to ride this wave of wellness. The NIH, for example, has its own division dedicated to these practices. Major medical facilities use forms of integrative medicine as well. Memorial Sloan Kettering Cancer Center, for one, offers integrative medicine services. Why might these options be an important part of health care for people living with HIV? The University of Maryland Medical Center’s website has this to say, in part, on the subject. “Many people with HIV turn to complementary and alternative therapies to reduce symptoms of the virus, lessen side effects from medications, improve overall health and wellbeing, and gain a sense of empowerment by being actively involved in their own care. Different therapies are used to inhibit the virus, treat symptoms of the virus or side effects of medication, treat or prevent opportunistic infections and improve function of the immune system. Since the major impact
Fear & Absence a call to revise hiv and sexual (mis)education
who have been so anesthetized by an HIV when they knew their status. This young client worried that in the climate outdated sex education system that equates pregnancy risk with heterosexof HIV criminalization, ignorance was ual intercourse between a cismale and legally safer. He did, he assured me, a cisfemale*, that they had no practice use condoms most of the time. And and no guidance translating reproduceven though Truvada is approved as tive and sexual part of HIV treatment health information for people much “...young people are into their embodyounger than he, as ied experience. a legal minor, he was making the best choices What both of too young to be a canthey can based on the these cases have didate for PrEP. in common is Another young residue of fear and that young people client, who is genabsence in HIV and are making the derqueer and bisexbest choices they ual, hadn’t really reproductive health can based on the understood that even education.” residue of fear and though they did not absence in HIV identify as female, and reproductive they needed to think health education. Their lives are not adabout birth control because they had an equately represented, and the very real XX reproductive system. Though their fears of criminalization are enforced by sexual partner did not identify as male, the lack of easy access to information they were in possession of XY chroand conversation. Not only were the mosomes and a penis, and they were intersections of bodies, genders, reprohaving penetrative vaginal/penile sex, duction, and serostatus left out of the so they were at risk for an unplanned conversations these young people had pregnancy. These young people are not been subjected to, but also, so was any ignorant about the politics and malleacontinued on page 62 bility of bodies. They are young people A&U • MAY 2015
illustration by Timothy J. Haines
t happens almost once a week: A Facebook friend posts a photo and description of a missing adolescent. Sometimes my friends know these kids, and sometimes they’re just reposting messages from their communities. Usually these young people turn up quickly, having roamed outside of the temporal and spatial knowledge of their parents and caretakers for teenage adventures. Girls are posted about more often than boys, perhaps because boys are still given more leeway to explore before communities become concerned. Once the girls come home or are found, I hear of conversations starting about STIs, birth control, and the morning-after pill (Plan B). When the boys come home or are found, I rarely hear of conversations about STI testing. And I never hear of any conversation about PEP, which needs to be started within seventy-two hours of HIV exposure. When I bring it up, sometimes people know what I’m talking about. Sometimes they don’t. There are so many concerning issues connected to this one moment. How are we educating young people? The dominant cultural sex education discourse in this country still harbors fear and hesitancy in talking about actual sex practices and embodied sexual desire and their intersections with gender identity and erotic partner choice. Adults and educators feed shame and fear along with (mis)education. What we forget is that young people absorb information from the cultural surround, consciously and unconsciously, just as we do. We forget that they live with knowledge and dailiness different from ours and craft their logic and decisions from them. When I asked one young man in my psychotherapy practice about his safer sex negotiations and practices with the other young men he was dating and experimenting with, he said that he didn’t ask people about their HIV status on purpose and he didn’t want to know his own. He’d read stories about people charged with reckless endangerment for potentially exposing sexual partners to
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
, 201 7 2 – 5 2 ber
E R U T L U C S THE
TIME CAPSULE looking ahead one century, what might you include to represent the aids pandemic?
by Alina Oswald
et’s pretend that a time capsule is being prepared to be buried for 100 years that will include cultural items related to HIV/ AIDS. It would be a chance for our generation to speak to future generations—a record of what we hold dear and do want to be buried by the sands of time. The end of AIDS, which will surely have happened by then, does not mean our lives—our experiences, our realities, our struggles and triumphs—need be erased. We invited artists, writers, entertainers, and advocates to participate in filling the imaginary time capsule, asking them: “What novel, memoir, movie, documentary, play, art work, etc., do you feel would help represent the first three decades of the pandemic and why? (We know it would be hard to pick just one, but rest assured many, many items will go in the time capsule!)” As you can see, we received many wonderful ideas! Maria Mejia, international social media activist, HIV consultant, speaker, blogger and The Well Project Global Ambassador/CAB, as well as a “human being who just happens to have
B0b Bowers, thirty-two-year survivor Founder of HIVictorious, Inc., selected the 1993 documentary Silverlake Life: The View from Here. “It was one of the most genuine and firsthand accounts of the epidemic that one could witness! It is beyond painful to sit through! Since viewing this film for my first time in 2004, I have a whole new commitment and tenacity to see an end to the scourge of AIDS! RIP, ANGELS!”
from movies like Longtime Companion and Angels in America, to memoirs and documentaries [like] We Were Here, Vito, United in Anger, [and] How to Survive a Plague, to name an obvious few, for me, a truly personal, poignant narrative was found in What Looks Like Crazy On an Ordinary Day by Pearl Cleage, a beautiful representation of
Ron B., celebrity host and entertainer, as well as a National Committee Member, LGBT Committee, SAG-AFTRA, selected Angels in America, directed by the late Mike Nichols and based on the play by Tony Kushner. “I was cast in the film, and learned of the plight of so many who suffered with this disease. [Angels in America] was also a successful play on Broadway before being adapted for this special Emmy-winning miniseries.
How to Survive a Plague, directed by David France
Hucklefaery, artist and activist, couldn’t choose just one: Longtime Companion, Angels in America, We Were Here, Vito, United in Anger, and How to Survive a Plague. “While there are many brilliant representations of the AIDS epidemic,
a woman becoming HIV-positive in rural southern America. What Looks Like Crazy On an Ordinary Day is a gorgeous story of struggle, stigma, survival, acceptance and love—greatly informing my own personal experience around seroconversion. Anthony Johnson, Senior Intervention Specialist, and an advocate and activist for the past eight years and living with A&U • MAY 2015
How to Survive a Plague photo by William Lucas Walker; Dab the AIDS Bear photo by Sean Black
HIV,” selected How to Survive a Plague, by David France; From a Warrior’s Passion and Pain, by Jason Wood and Maria Mejia; and A&U Magazine. “This is very hard! I would have to choose the movie How to Survive a Plague (featuring Peter Staley) because it tells the story from the beginning [of the AIDS pandemic], and then I would include my own book From a Warrior’s Passion and Pain because I lived through it all, and it tells the story of how I dealt with it through my eyes. I will also have A&U Magazine. It captures us in a very accurate way!”
HIV for twenty, selected How to Survive a Plague. “How to Survive a Plague represents the battles that we as individuals infected and affected have had to face over the years to not just survive a devastating disease, but to overcome the ignorance, stigma, and fear associated with it. Though we have come a long way in many respects, the battle continues and the war has yet to be won.” Kathy Seward-Mackay, photographer and author living in southern New Hampshire, highlighted her work, Dying in Vein: Blood, Deception...Justice. “One of the tragedies of the AIDS pandemic is that so many lives could have been saved had the issue been given the attention it deserved at the onset of the crisis in the early 1980s. People with hemophilia, who relied on commercial blood products to treat their disease, were victims of corporate greed and the federal government’s failure to protect the blood supply. The personal stories and photographs in Dying in Vein bear witness to the devastating effects of AIDS within the hemophilia community.” Lady Clover Honey, drag queen performer, transgender artist, cabaret chan-
teuse and television reporter, settled on Rent. “The stage musical and Broadway hit was also made into a film musical. Rent is actually a modern telling of the classic opera, La Bohème. It showcases a group of friends who lived in Manhattan’s Lower East Side/East Village in the late 1980s, which at the time was an artists’ Bohemian district The musical helped generate AIDS awareness to the mainstream, and to a new, younger group of people. It also shows that all types of individuals could become infected. The characters in Rent had to face AIDS as they created their art and lived their lives. Dab Garner, CEO Dab the AIDS Bear Project, thirty-four year HIV survivor, activist, and speaker, as well as the creator of Dab the AIDS Bear, Dab the Breast Cancer Bear and Dab the Anti-Bullying Bear, along with worldwide holiday events for children living with HIV, called Teddy Bear Touchdowns, in memory of his god-daughter, Candace, who lost her battle with AIDS at age four, in 1989, selected his own heartfelt creation. “I hope this doesn’t sound egotistical, but I would say...one of the first Dab the AIDS Bears. The bear’s mission is to bring love, hope and compassion to people living with HIV since, especially at the start [of the epidemic]. In 1981, I gave the very first bear on March 21, 1981 to my best friend,
MAY 2015 • A&U
to let him know he was loved and not alone. Back then in San Francisco, people could not visit their loved ones in quarantine. Even the doctors wore hazmat-suits. The second bear was given on July 5, 1981, when my first partner was placed in quarantine after taking him to the ER. “I have been very lucky and honored to have two Dab the AIDS Bears as part of exhibits at the Smithsonian, in DC. One is in Ryan White’s bedroom, donated by Jeanne White Ginder. The second [became] part of the DC Cowboys display after they disbanded, a few years ago. They have been using the bear in one of their dances for years honoring those who had lost their battle with AIDS.” Benjamin Fredrickson, artist and photographer, chose The Living End, a 1991 film by Gregg Araki. “The Living End is a film about two HIV-positive men who go on a road trip together and give society the middle finger. It tackles the subject of HIV/AIDS, while it was still in its infancy, before protease inhibitors existed, capturing the sense of urgency within the queer community at that time, when queers were angry and fighting back. You can feel the rage in this film. It’s guerilla filmmaking in its finest form, and one of the most important queer films ever made.” Alina Oswald interviewed artist Benjamin Fredrickson for this month’s Gallery.
A Calendar of Events
photos by Mike Pingel
he bases are loaded—with fun and AIDS awareness—at the fourth annual Drag Queen World Series. The West Hollywood Cheerleaders will go head-to-head with defending champions The LA Sisters of Perpetual Indulgence in a softball game to benefit The Life Group LA and help destigmatize HIV. The Life Group LA is a non-profit organization dedicated to the education, empowerment, and emotional support of those who are infected and affected by HIV/AIDS. All services are free of charge. One of its mainstays is its series of POZ Life Weekend Seminars, where individuals living with HIV and their families can come together in an atmosphere of support and understanding to share strategies for achieving positive wholeness. Color commentary will be provided by Chita Parol and Frieda Laye, two members of the drag comedy trio, Chico’s Angels. Celebrity DJ Eur-O-Steve will spin tunes and a Babys Badass Burgers food truck will be serving food. Raffle tickets will offer chances to win, among other goodies, an $8,000 grand prize—a weekend away for up to sixteen people at the Famous Harpo Marx Estate in Rancho Mirage, California. Date: May 9; time: 1–4 p.m.; Glendale Sports Complex, 2200 Fern Lane, Glendale, California; tickets: $10 (pre-sale), $15 (at door). For more information, log on to: www.dragqueenworldseries.com and www.TheLifeGroupLA.org.
Vital Subjects continued from page 58 reference to desire and joy. What would it mean to teach a sexuality of choice that is organized around consent, negotiation, and mutual desire and pleasure? My young client who worried about the climate of criminalization was right. The attacks on seropositive people in consensual relationships, the attacks on abortion-providing women’s health clinics, and the attacks on affordable health care are all issues at the core of how we educate young people (and remind ourselves) about the centrality of agency in health decisions and how deeply threatened we are at all times. I’m overwhelmed sometimes, as I sit in my psychotherapy practice envisioning how to update the conversation to match and meet the experiences of young people when we therapists and educators are still updating the conversations for ourselves. The HIV treatment options and reproductive possibilities for all of us are in constant flux, in wonderful and mindboggling ways. Here’s the problem: There is no concrete, unchanging curriculum for talking about sexuality and sexual and reproductive health. That’s the point of
any kind of cultural, epidemiological, or individual development. We don’t stop developing at some set point in our lives. This is in fact what we hope for: that we teach our young people how to have conversations that shift and change as the world changes around us. PrEP and PEP aren’t perfect solutions. Just like Plan B isn’t a perfect solution. But twenty years ago we would have given anything for them. The language we need to learn and develop for talking about them won’t come from those of us who came of sexual age before them, but from listening to those who are coming of age with them. Maybe the answer is that we can’t know more than these young people know—not about the contexts in which they live. Education is a reciprocal conversation: You tell us what your lived experience is. We’ll tell you what we know about how you can stay safe without unnecessary fear and risk. We may not be able to anticipate the questions. We won’t have all the answers. But we’ll try to find them together. * Refers to a person whose gender identity is
the same as the gender as that assigned at birth (i.e., not a transgender man/woman). Colloquially shortened to “cis” or combined as ciswoman or cisman. The word “cisgender” distinguishes without assuming that cisgender is the neutral or normal state. Source: National Lesbian and Gay Journalists Association In all case examples from my clinical practice, clients’ identities and details are changed significantly to disguise their specificity and identity. The issues raised are actual questions and issues from my clinical practice, clinical supervision, and teaching. 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 • MAY 2015
MAY 2015 • A&U
[a portrait by sean black]
Greg Wilson Los Angeles, California A worker in the HIV field for over ten years, Greg currently serves as Deputy Director of Reach LA, a non-profit that provides services and resources to LGBTers, particularly urban youth and particularly those most at risk for HIV. This fall, he is releasing his first book, Metamorphosis of a Heart, about the trials and tribulations young people are going through and how to overcome them. “Life is ten percent of what happens to us and ninety percent of how we respond to those things. “AIDS-related illnesses are killing us and people are afraid—so afraid they’d rather act as if it doesn’t exist, but denying it doesn’t make it go away. Because of feared judgment or being rejected by loved ones, many people aware of their status still do not take part in healthcare services nor do they seek emotional support for coping, leading to higher rates of depression, suicide, and drug dependency in our community. This needs to change.We need to make our conversations about what it means to be HIV-positive a normal part of health discussions as well as discussing how to maintain an HIV-negative status along with the healthiest lifestyle possible for those who are not infected.” Sean Black is a Senior Editor of A&U. 64
A&U • MAY 2015
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