MAY 2016 • ISSUE 259 • AMERICA’S AIDS MAGAZINE
HIV & Health Justice Julie Graham • Connie Rose • Lambda Legal • Harm Reduction Injection Sites • Medicaid Blockade for HCV Coverage • Kylar Broadus
Dolls of Hope • Last Men Standing • Dini von Mueffling
THE SINGER & EXECUTIVE PRODUCER OF A NEW MOVIE, MOTHERS AND DAUGHTERS, AIMS TO MAKE AIDS AWARENESS A MATTER OF EMPOWERMENT
New Odefsey速 is now available
Actual Size (15.4 mm x 7.3 mm)
One small pill contains rilpivirine, emtricitabine, and tenofovir alafenamide (TAF). Ask your healthcare provider if ODEFSEY is right for you. To learn more visit ODEFSEY.com
Please see Brief Summary of Patient Information with important warnings on the following pages.
Brief Summary of Patient Information about ODEFSEY ODEFSEY (oh-DEF-see) (emtricitabine, rilpivirine and tenofovir alafenamide) tablets Important: Ask your healthcare provider or pharmacist about medicines that should not be taken with ODEFSEY. There may be new information about ODEFSEY. This information is only a summary and 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 ODEFSEY? ODEFSEY can cause serious side effects, including: • Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis may happen in some people who take ODEFSEY or similar 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 • Severe liver problems. Severe liver problems may happen in people who take ODEFSEY. In some cases, these liver problems can lead to death. Your liver may become large and you may develop fat in your liver. 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 – nausea – pain, aching, or tenderness on the right side of your stomach area • You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking ODEFSEY or a similar medicine for a long time. • Worsening of Hepatitis B virus (HBV) infection. ODEFSEY is not approved to treat HBV. If you have HBV and take ODEFSEY, your HBV may get worse (ﬂare-up) if you stop taking ODEFSEY. A “ﬂare-up” is when your HBV infection suddenly returns in a worse way than before. – Do not run out of ODEFSEY. Reﬁll your prescription or talk to your healthcare provider before your ODEFSEY is all gone. – Do not stop taking ODEFSEY without ﬁrst talking to your healthcare provider. – If you stop taking ODEFSEY, 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 ODEFSEY.
What is ODEFSEY? ODEFSEY is a prescription medicine that is used to treat HIV-1 in people 12 years of age and older: • who have not received HIV-1 medicines in the past and have an amount of HIV-1 in their blood (“viral load”) that is no more than 100,000 copies/mL, or • to replace their current HIV-1 medicines in people who have been on the same HIV-1 medicines for at least 6 months, have a viral load that is less than 50 copies/mL, and have never failed past HIV-1 treatment. It is not known if ODEFSEY is safe and effective in children under 12 years of age or who weigh less than 77 lb (35 kg). When used to treat HIV-1 infection, ODEFSEY may help: • Reduce the amount of HIV-1 in your blood. This is called “viral load”. • Increase 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). ODEFSEY 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. Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or re-use 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.
Who should not take ODEFSEY? Do not take ODEFSEY if you also take a medicine that contains: • carbamazepine (Carbatrol®, Epitol®, Equetro ®, Tegretol®, Tegretol-XR®, Teril®) • dexamethasone (Ozurdex®, Maxidex®, Decadron®, BaycadronTM) • dexlansoprazole (Dexilant ®) • esomeprazole (Nexium®, Vimovo ®) • lansoprazole (Prevacid®) • omeprazole (Prilosec®, Zegerid®) • oxcarbazepine (Trileptal®) • pantoprazole sodium (Protonix®) • phenobarbital (Luminal®) • phenytoin (Dilantin®, Dilantin-125 ®, Phenytek®) • rabeprazole (Aciphex®) • rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®) • rifapentine (Priftin®) • the herb St. John’s wort or a product that contains St. John’s wort
What should I tell my healthcare provider before taking ODEFSEY? Before taking ODEFSEY, tell your healthcare provider if you: • have liver problems including hepatitis B or C virus infection • have kidney and bone problems • have had depression or suicidal thoughts • have any other medical conditions • are pregnant or plan to become pregnant. It is not known if ODEFSEY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking ODEFSEY.
Pregnancy registry: there is a pregnancy registry for women who take HIV-1 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. • are breastfeeding or plan to breastfeed. Do not breastfeed if you take ODEFSEY. – You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. – At least one of the medicines in ODEFSEY can pass to your baby in your breast milk. It is not known if the other medicines in ODEFSEY 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. Some medicines may interact with ODEFSEY. Keep a list of your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. • You can ask your healthcare provider or pharmacist for a list of medicines that interact with ODEFSEY. • Do not start a new medicine without telling your healthcare provider. Your healthcare provider can tell you if it is safe to take ODEFSEY with other medicines. How should I take ODEFSEY? • Take ODEFSEY exactly as your healthcare provider tells you to take
• • •
it. ODEFSEY is taken by itself (not with other HIV-1 medicines) to treat HIV-1 infection. Take ODEFSEY 1 time each day with a meal. Do not change your dose or stop taking ODEFSEY without ﬁrst talking with your healthcare provider. Stay under a healthcare provider’s care when taking ODEFSEY. Do not miss a dose of ODEFSEY. If you take too much ODEFSEY, call your healthcare provider or go to the nearest hospital emergency room right away. When your ODEFSEY supply starts to run low, get more from your healthcare provider or pharmacy. This is very important because the amount of virus in your blood may increase if the medicine is stopped for even a short time. The virus may develop resistance to ODEFSEY and become harder to treat.
What are the possible side effects of ODEFSEY? ODEFSEY may cause serious side effects, including: • See “What is the most important information I should know about ODEFSEY?” • Severe skin rash and allergic reactions. Skin rash is a common side effect of ODEFSEY. Rash can be serious. Call your healthcare provider right away if you get a rash. In some cases, rash and allergic reaction may need to be treated in a hospital. If you get a rash with any of the following symptoms, stop taking ODEFSEY and call your healthcare provider right away: – fever – skin blisters – mouth sores – redness or swelling of the eyes (conjunctivitis) – swelling of the face, lips, mouth or throat – trouble breathing or swallowing – pain on the right side of the stomach (abdominal) area – dark “tea-colored” urine
• Depression or mood changes. Tell your healthcare provider right
away if you have any of the following symptoms: – feel sad or hopeless – feel 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 ODEFSEY. Liver problems can also happen during treatment with ODEFSEY 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 ODEFSEY. • 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. • 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 ODEFSEY. Your healthcare provider may tell you to stop taking ODEFSEY if you develop new or worse kidney problems. • Bone problems can happen in some people who take ODEFSEY. Bone problems may include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. The most common side effects of rilpivirine, one of the medicines in ODEFSEY, are depression, trouble sleeping (insomnia), and headache. The most common side effect of emtricitabine and tenofovir alafenamide, two of the medicines in ODEFSEY, is nausea. 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 ODEFSEY. For more information, ask your healthcare provider or pharmacist. • Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. This Brief Summary summarizes the most important information about ODEFSEY. If you would like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about ODEFSEY that is written for health professionals. For more information, call 1-800-445-3235 or go to www.ODEFSEY.com. Keep ODEFSEY and all medicines out of reach of children. Issued: March 2016
ODEFSEY, the ODEFSEY Logo, GILEAD, the GILEAD Logo, and GSI are trademarks of Gilead Sciences, Inc., or its related companies. All other trademarks referenced herein are the property of their respective owners. © 2016 Gilead Sciences, Inc. All rights reserved. GILC0217 03/16
t o n ! s e i u l e Hat York va w e N a
SIGN UP TODAY! A fundraising walk starting and ending in Central Park Special thanks to
212.807.WALK PREMIER SPonSoRS
and 40 other tri-state area AIDS service organizations.
MAY 15, 2016 Created and produced by MZA Events. AIDS Walk Founder/Senior Organizer: Craig R. Miller. ÂŠ MZA Events, 2016
In Cooperation with
c o n t e n t s May 2016
50 Cover On the Eve of the Premiere of Mothers and Daughters, a New Film She Executive-Produced, Singer Ashanti Takes Time to Talk with A&U’s Dann Dulin About Losing a Relative to AIDS & the Importance of AIDS Awareness
Features 36 Gallery Cynthia Davis Creates Hope One Doll at a Time 40 Seeking Justice Attorney Kylar Broadus Advocates for Transgender Rights
TYing It All Together
Bright Lights, Small City
46 Last Men Standing A Doc Creates a Portrait of Survivors
Our Story, Our Time
56 Know Your Rights Lambda Legal Helps to Dismantle HIV Criminalization
The Whole Perspective
The Culture of AIDS
44 Accidental Activist Julie Graham Fights Back Against Unfair HIV Laws
58 Safe(r) Spaces Will a New Idea in Harm Reduction Help IV Drug Users? 13 Nonfiction by D.W. Anderson 30 Role Call by Connie Rose cover photo by Annie Tritt; cover credits: Zara/belted jacket; Oscar Tiye/Sandals; Helen Ficalora/disc necklace; H&M/earrings and rings
aybe it’s me, but doesn’t it seem odd that Charlie Sheen is no longer making headlines now that the announcement of his HIV status is behind him? After the initial media frenzy, the story has faded from the mainstream press and the tabloids. You’d think that the same press that’s so willing to cover the dayto-day circus antics of this year’s Presidential election would also be just as interested in the story developing around Mr. Sheen’s health status. Is AIDS such a non-story these days that an A-list celebrity like Sheen can only generate so much media buzz? Is the press only interested in the seamy side to the Sheen story—check out the latest sensationalized speculation that Prince had AIDS—that it can’t dig deeper into the medical side? Supposedly, Mr. Sheen’s involvement in a cutting edge protocol (see Treatment Horizons) is no longer a secret. Hopefully, if he is treated successfully, the story of this possible breakthrough in HIV therapy will be replicated in thousands of others. Only time will tell. Even members of the AIDS press have moved on to other stories, other issues, other therapeutic breakthroughs. We live in a world of sound bites. When Rock Hudson’s suspected status became headlines over thirty years ago, it was news for months. Images of the withering Hollywood hunk being propped up by his good friend and costar Doris Day were etched into our country’s collective consciousness. As was paranoia about living next door to HIV patients—be they Ryan White or a famous moviestar. Oh, how times have changed: The recent “outing” of Mr. Sheen from the HIV closet is but a distant memory. He became both vilified and pitied in a matter of minutes. In the same way, Mr. Sheen’s reputation has been further sullied in the court of public opinion; but the ensuing silence about this promising treatment protocol is scandalous in its own way. It’s as if the former star of Two and a Half Men can’t possibly be taken seriously about his health problems. Is it that being HIV-positive is the new normal? I’m not trying to sound too scaremongering, but people shouldn’t turn safer sex into an option. It should be taught as a way to end AIDS. The only way to put AIDS in
AMERICA’S AIDS MAGAZINE issue 259 vol. 25 no. 5 May 2016 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner
the past tense is to make it a part of every young person’s life curriculum. Grammy-winning singer and now movie producer Ashanti fervently believes in testing and wants people to take their heads out of the sand. Having lost a relative to the disease, she tells A&U’s Dann Dulin: “People need to understand that the disease does not discriminate. Anyone can get it. That needs to be drilled. If you think you’re not part of a certain group that won’t get HIV, you’re fooling yourself.” Ignorance is never bliss. We need to understand what prevents individuals from knowing their status. We need to understand our treatment options if positive. We need to understand why stigma keeps coming back like kudzu, that annoying plant that spreads and spreads. Stigma is especially pernicious because it not only affects people on an individual level but it affects people on a structural level. Stigma, especially when we realize that it is based on outdated science, has informed our HIV criminalization laws for too long. In this issue, we focus on health justice. We interview Julie Graham, who was initially criminally charged for supposedly not disclosing her HIV-positive serostatus. This issue also spotlights the HIV-related work of Lambda Legal, which fights against injustices like a man who was convicted of intentionally exposing someone to HIV even though his sexual partner did not contract HIV. AIDS advocate Connie Rose weighs in on how a recent spate of proposed legislative bills focused on marriage may in fact be trying to further codify HIV discrimination. We also are pleased to offer the insights of Kylar Broadus, founder of the Trans People of Color Coalition and one of the leaders in the fight to protect the rights of trans individuals, including access to healthcare. Like the advocates in this issue know, once we understand we need to act. Otherwise, the moment will pass us quicker than the Internet can alert us to another headline.
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: Tyeshia Alston, Noël Alumit, Heather Arculeo, Larry Buhl, Ruby Comer, Diane Goettel, Sally Hessney, George M. Johnson, John Francis Leonard, Angela Leroux-Lindsey, Dale Reynolds, Elizabeth Rodgers, David Rosenberg, Corey Saucier, Stevie St. John, Justin B. Terry-Smith, Hank Trout, 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, 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 Nancy Ellegate, 1959–2015 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. ©2016 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 12210-2743, USA
Printed in USA • Visit our Web site at www.aumag.org
x o b l i ma Facing the Future It’s just so wonderful and amazing and fantastic that you did an interview with Mariela Castro [cover story, “A Haven in Havana,” by Sean Black, with Chael Needle, March 2016]! It is about time that we talked to the Cubans after nearly sixty years of a stupid embargo
that Cuba had one of the best AIDS programs in the Western Hemisphere and that LGBT people have rights. Definitely things are getting better in Cuba. Mariela said: “He [Raul] has always, nevertheless, encouraged my siblings and me to fight for our own beliefs and causes. I am forever grateful to my father for his advice.” Thanks for an amazing story on the new Cuba. —Juana Bautista Ortega Miami, Florida
MARCH 2016 • ISSUE 257 • AMERICA’S AIDS MAGAZINE
Black AIDS Institute in Havana • Belkis Fonseca Medina • Jesús Manuel Rodrigues Valle • VIVA: Find Your Voice
plus • David Hilliard • MSMGF • LGBT Survival Guide
photo by Sean Black
CENESEX’s Director Helps Lead the Fight for HIV & Sexual Health Awareness in Cuba
and no relations with the government of Cuba. Mariela Castro is the face of the new Cuba; the time of the Castro brothers, Fidel and Raul, is over; they will be dead soon. Fidel is what, ninety years-old? I am just so excited with all the new things going on. I did not know MAY 2016 • A&U
This is one of the greatest things to see: your cover with the smiling face of Mariela Castro Espín on it, representing the next wave of HIV education. I have the feeling that everything is about to change for the better. It’s about time that the USA and Cuba were talking.
Come on, fifty years of not talking? We talk to the Chinese, Vietnam, Laos, and all the former states of Eastern Europe and to the former Soviet Russia. Remember these were former Communist countries. Once American tourists and trade start pouring in you’re going to see a sea wave of change in Cuba and things will be better for the Cuban people. Viva Cuba, Viva America! —Freddy Ramos Tampa, Florida
“This is one of the greatest things to see: your cover with the smiling face of Mariela Castro Espín on it, representing the next wave of HIV education. I have the feeling that everything is about to change for the better. It’s about time that the USA and Cuba were talking. Come on, fifty years of not talking?” I can’t believe that you put a Castro on the cover of your magazine! Are you people for real? Ms. Castro looks nice and she talks really nice, too. She was probably rehearsed by the Cuban Ministry of Propaganda. She and the Cubans are pulling the wool over your eyes and it looks like your people were fooled. Remember, the so-called lovely Castro family killed thousands, imprisoned even more people, forced over a million people to flee Cuba, confiscated millions of acres of land. Took over all business big and small, persecuted the Catholic Church and all other religions, made an alliance with the Communist world and brought weapons to Cuba. Castro also tried to foment revolution in South America. So this is the lovely attractive Cuba that
WHAT IS GENVOYA®? GENVOYA is a 1-pill, once-a-day prescription medicine used to treat HIV-1 in people 12 years and older. It can either be used in people who are starting HIV-1 treatment and have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements. These include having an undetectable viral load (less than 50 copies/mL) for 6 months or more on their current HIV-1 treatment. GENVOYA combines 4 medicines into 1 pill taken once a day with food. GENVOYA is a complete HIV-1 treatment and should not be used with other HIV-1 medicines. GENVOYA does not cure HIV-1 or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking GENVOYA. 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 EJCPEGQHUGZWCNEQPVCEVYKVJDQF[ƃWKFU0GXGTTGWUGQTUJCTG PGGFNGUQTQVJGTKVGOUVJCVJCXGDQF[ƃWKFUQPVJGO
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about GENVOYA? GENVOYA may 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 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 and fatty. Symptoms of liver problems include your skin or the white part of your eyes turning yellow (jaundice), dark “teacolored” 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, or have been taking GENVOYA for a long time. In some cases, lactic acidosis and serious liver problems have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking GENVOYA, your HBV may suddenly get worse. &QPQVUVQRVCMKPI)'081;#YKVJQWVƂTUVVCNMKPIVQ[QWT healthcare provider, as they will need to monitor your health.
Who should not take GENVOYA? Do not take GENVOYA if you take: • Certain prescription medicines for other conditions. It is important to ask your healthcare provider or pharmacist about
medicines that should not be taken with GENVOYA. Do not start a new medicine without telling your healthcare provider. • The herbal supplement St. John’s wort. • Any other medicines to treat HIV-1 infection.
What are the other possible side effects of GENVOYA? Serious side effects of GENVOYA may also include: • Changes in body fat, which can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may IGVUVTQPIGTCPFDGIKPVQƂIJVKPHGEVKQPU6GNN[QWTJGCNVJECTG provider if you have any new symptoms after you start taking GENVOYA. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking GENVOYA. • Bone problems, such as bone pain, softening, or thinning, which may lead to fractures. Your healthcare provider may do tests to check your bones. The most common side effect of GENVOYA is nausea. 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 GENVOYA? • All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and overthe-counter medicines, vitamins, and herbal supplements. Other medicines may affect how GENVOYA works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Ask your healthcare provider if it is safe to take GENVOYA with all of your other medicines. • If you take antacids. Take antacids at least 2 hours before or after you take GENVOYA. • If you are pregnant or plan to become pregnant. It is not known if GENVOYA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking GENVOYA. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.
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 Important Facts about GENVOYA including important warnings on the following page.
Ask your healthcare provider if GENVOYA is right for you, and visit GENVOYA.com to learn more.
GENVOYA does not cure HIV-1 or AIDS.
photo by Stuart Locklear
Take care of what matters mostâ€”you. GENVOYA is a 1-pill, once-a-day complete HIV-1 treatment for people who are either new to treatment or people whose healthcare provider determines they can replace their current HIV-1 medicines with GENVOYA.
IMPORTANT FACTS This is only a brief summary of important information about GENVOYA and does not replace talking to your healthcare provider about your condition and your treatment.
(jen-VOY-uh) MOST IMPORTANT INFORMATION ABOUT GENVOYA
POSSIBLE SIDE EFFECTS OF GENVOYA
Genvoya® may cause serious side effects, including:
GENVOYA can cause serious side effects, including:
• Build-up of lactic acid in your blood (lactic acidosis), which is a serious medical emergency that can lead to death. Call your healthcare provider right away if you have any of these symptoms: feeling very weak or tired, unusual 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. • Severe liver problems, which in some cases can lead to death. Call your healthcare provider right away if you have any of these symptoms: 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. • Worsening of Hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking GENVOYA. Do not stop taking GENVOYA without ﬁrst talking to your healthcare provider, as they will need to check your health regularly for several months.
You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight, or have been taking GENVOYA for a long time.
• Those in the “Most Important Information About GENVOYA” section. • Changes in body fat. • Changes in your immune system. • New or worse kidney problems, including kidney failure. • Bone problems. The most common side effect of GENVOYA is nausea. These are not all the possible side effects of GENVOYA. Tell your healthcare provider right away if you have any new symptoms while taking GENVOYA. Your healthcare provider will need to do tests to monitor your health before and during treatment with GENVOYA.
BEFORE TAKING GENVOYA Tell your healthcare provider if you: • Have or had any kidney, bone, or liver problems, including hepatitis infection. • Have any other medical condition.
• Are pregnant or plan to become pregnant.
• GENVOYA is a prescription medicine used to treat HIV-1 in people 12 years of age and older who have never taken HIV-1 medicines before. GENVOYA can also be used to replace current HIV-1 medicines for some people 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 HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements. • GENVOYA does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others. Do NOT take GENVOYA if you: • Take a medicine that contains: alfuzosin (Uroxatral®), carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), cisapride (Propulsid®, Propulsid Quicksolv®), dihydroergotamine (D.H.E. 45®, Migranal®), ergotamine (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), lovastatin (Advicor®, Altoprev®, Mevacor®), methylergonovine (Ergotrate®, Methergine®), midazolam (when taken by mouth), phenobarbital (Luminal®), phenytoin (Dilantin®, Phenytek®), pimozide (Orap®), rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®), sildenafil when used for lung problems (Revatio®), simvastatin (Simcor®, Vytorin®, Zocor®), or triazolam (Halcion®). • Take the herbal supplement St. John’s wort. • Take any other HIV-1 medicines at the same time.
• Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-the-counter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that should not be taken with GENVOYA.
HOW TO TAKE GENVOYA • GENVOYA is a complete one pill, once a day HIV-1 medicine. • Take GENVOYA with food.
GET MORE INFORMATION • This is only a brief summary of important information about GENVOYA. Talk to your healthcare provider or pharmacist to learn more. • Go to GENVOYA.com or call 1-800-GILEAD-5 • If you need help paying for your medicine, visit GENVOYA.com for program information.
GENVOYA, the GENVOYA Logo, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks are the property of their respective owners. Version date: November 2015 © 2016 Gilead Sciences, Inc. All rights reserved. GENC0020 03/16
Representing Us The article on Evan Low was very nice; it’s good to hear about the success of an up-and-coming young gay Asian man who got elected to the California legislature [Ruby’s Rap, March 2016]. Sometimes Ms. Ruby does really charming stories about people who are really committed to fighting AIDS. You really hear very little about how AIDS affects the Asian and Pacific Islander community. It was nice that Evan clued us in on what’s really happening. —Johnny Polonka Santa Cruz, California
Don’t Worry, Be Happy What a really, really insightful column by Belkis Fonseca Medina in your magazine [Role Call, March 2016]. Just looking at her face in the photo I had a feeling that she was a truly caring human being. I think her agency Centro Esperanza Cuba is what the youth and all people affected by HIV need in Cuba. Belkis is just the right kind of person to run such an organization. —Wanda Lucia-Vega Amarillo, Texas
We Are Survivors
photo by Sean Black
Cuban AIDS activist Belkis Fonseca Medina your magazine wants to present to the American people? —Maria Enderes Atlanta, Georgia
communist country and not everyone is free to talk. —Ronnie Tugglesworth Tulsa, Oklahoma
Featuring a story on Cuba and Mariela Castro Espín, the niece of Fidel Castro, is the most outrageous and disgusting thing that your magazine has done! I need to clue your editors and staff in that Fidel Castro is a mass murderer just like Pol Pot of Cambodia. For over sixty years the Cuban people have lived in a police state and many have lived in prisons. I want to remind you that people with HIV/AIDS and gay people in general were put in quarantines and mental institutes. And now these people are free in Cuba and are living just free and independent lives? Remember, this is a dictatorship and is still a
Editor’s note: We understand that many people’s experiences may differ from the “official story,” but we approached the interview with Mariela Castro in the spirit of our renewed relations with Cuba. Through dialogue with this former “enemy,” we can potentially start to redress past wrongs and see if we can find common ground moving forward. For us, that common ground includes LGBT rights and HIV education and Castro has been recognized for both. Mariela Castro represents a new, younger generation of Cubans, many of whom are seeking to change the country for the better. We need to help with this project if they truly envision a more just future.
MAY 2016 • A&U
Thank you for featuring these spotlights of individuals living with HIV/ AIDS on the last page of your magazine [Survival Guide, March 2017]. I always read this first! Each month I find it empowering to hear what others have to say and learn a little about how they have survived and thrived. Living with HIV comes with its struggles but it’s important to see that it’s not all doom and gloom. —Chuck Howe Nanuet, New York
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Rain or shine, this ride is amazing, and so important to the LGBT community living with AIDS/HIV. Being able to bring awareness to the AIDS epidemic before, during, and after the Ride is my reason for riding. I go into the Ride with one goal and finish accomplishing so much more. — Andrew, Rider No. 109
ork o new Y
5, 2 2 – 3 2 r mbe
brakingaidsride.org 866-858-6877 A&U • APRIL 2016
Magic and Mercury
“The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown.”—H.P. Lovecraft
ighth grade, I was playing four square during recess with my fellow St. Luke’s Lutheran schoolmates. A horde of cheerleaders appeared. They were led by Ashley, a thin wisp of tan blonde. “You hang out with Nikki Jenson, don’t you?” I nodded. “I’m dating her.” Nikki was a freshman from CHS, a public school; to most cheer-team girls, public schoolers were poor, did heroin, and carried murderin’ knives. Knives just for murderin’. I stepped out of the game. Irritated, I said, “So what?” In Ashley’s wake were her cheer-team tentacles, their hair flowing and flapping like Medusa’s. “And you’ve, you know, done stuff with her?” Ashley said. “I guess so, yeah. Some stuff.” Ashley scoffed, flipped her hair. Cascading, all the heads behind her flipped their hair. “You know what she has, right?” I shook my head. A dead mom? A dad who sends checks to her foster parent? Ashley set her hands on her hips. “AIDS. She has the AIDS, Danny. Now you do, too.” Synchronized, they turned away. Budding hips swaying in rhythm, they strutted back to their lair, the swingset. Thirteen years old, I had AIDS. What’s AIDS? Magic Johnson. I knew he had it. But what was AIDS? Our school had no computer to Google; my parents’ house had no Internet; the library’s limited hours (9 a.m.–5 p.m.) meant I could never catch a ride across town. I had no reliable person I could comfortably ask; I was the oldest brother— Tim and Mike, too young to help. Mom, she’d be too fixated on some Lifetime flick to do more than nod absentmindedly. Oh! Freddie Mercury, too. Lead singer of Queen. He died from AIDS. If Mr. I-Wrote-Bohemian-Rhapsody couldn’t survive it, I knew I was in trouble. That night, I lay in bed, making my will.
MAY 2016 • A&U
by D.W. Anderson
To Mike, I bequeath my N64 (even the Zelda games) and J Reynolds electric guitar. To Tim, I bequeath my aluminum bats, baseball mitts, and jerseys: Griffey Jr., Reggie White, Richie Sexon, Brett Favre. St. Luke’s Lutheran hadn’t taught us about sex. Sex and its branching topics were taboo. You avoided sex—the topic and the act until marriage. Our Pastor’d said, If she bleeds the night of your wedding, then you know she’s pure. She’s going to bleed? Early that year, Mr. Sven tried. He popped in an 80’s VHS; I later found out he was forbidden to show this video, but it didn’t matter. A minute into the film, a kid tried holding in a sneeze and let out an avalanche of flatulence. The tee-hee-haw-hawing never stopped, so Sven gave up, turned off the VHS. Even today, you ask those kids about sex education, and that’s all they remember. A torrent of motorcycle farts. I’d heard (and repeated) AIDS/HIV jokes from Dad’s favorite comedians—Carlin, Murphy, Pryor, Williams. But now it wasn’t a joke. It was reality. Like for Mercury and Magic. I was going to die, right? Couldn’t ask Dad—a church elder, a leader of the flock. I could only imagine that conversation: “Dad.” “Hello, son.” A cordial, firm handshake. “Got a Q for you.” “Shoot.” “Whatcha know about AIDS? ’Cuz I may have got me some. Yes, I know I’m thirteen and a virgin. But, live and let live…?” A devout Christian, he probably knew as much as I did. He’d probably ask, Isn’t that the Magic Johnson disease? I couldn’t ask the Pastor, with his jowls and jiggly turkey-gobbler neck; judgment loomed too readily like a batter on-deck. Sodom, Gomorrah, he’d bring up. Onan, the prostitute Aholibah, and all the Roman lechers. And no Internet at my fingertips. Sitting cross-legged on the carpet in Dad’s bedroom, I folded back his paperback dictionary: AIDS. Disease of the immune system charac
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terized by increased vulnerability to cancers, such as Kaposi’s sarcoma, and neurological disorders. What? Didn’t a Kaposi used to pitch for the Mariners? Then I remembered the dusty classroom encyclopedia set. The “A” Encyclopedia. Yes, that’d work, I thought as I laid sleepless in my Space Jam sheets, staring at the white ceiling. Nikki and I, we’d kissed; I’d squeezed and poked unfamiliar parts of her. Quite romantic. But that was it. She wasn’t a virgin. She’d bragged about this to me, about the guys who wanted her, about guys who’d already had her. But I was a virgin, so could I still get it? Was it like a cold? Or third-grade cooties? I didn’t understand. I just knew she wasn’t a virgin, and she had it, which meant I did, too. Ashley’d said so. I prayed, wriggling and sweating in bed. In religion, death is a win. Eternal bliss, a room with a view. But I wasn’t ready—too afraid. Fear and hopelessness except in death is a horrible way to see this world, and this night sparked my first foray into an endless battle with anxiety; the unsettling fear of the unknown. During devotion the next morning, I hid the “A” encyclopedia on my lap, searching to learn my prognosis. I thought of the jokes I’d made after watching episodes of South Park. Insensitive. Detached. I didn’t get it. I had no clue. The encyclopedia was no help. But I wanted to backtrack. Correct my errors. After school, I bought a sports magazine from Bob’s Mart with my paper route money. I hoped to find Magic Johnson’s address. I wanted to apologize to him via snailmail. I wanted to ask advice. Terrified, I needed support. Who better than Magic himself? I took Nikki to a movie. Just Married with Ashton Kutcher and Brittany Murphy. I held Nikki’s hand so tight for so long that she looked at me, pulling our sweaty hands apart. “Are you okay?” she said, rubbing her thumb against my cheek. “I’m sorry. I’m just—my brain feels like it’s on ’roids.” I hadn’t found Magic’s address in the magazine. Why’d I think they’d have his contact info listed in Sports Illustrated? She kissed my cheek. “I’m sorry. If I can do anything,” she said, rubbing my leg. “You just let me know.”
MAY 2016 • A&U
When she did this, I thought I loved her. Even though I was dying because of this relationship, I thought I loved her. Her smile. Her smell. Pina colada shampoo. Cinnamon gum. That she seemed to care. Compassion shown to me when I was most afraid; it was no different than why I paid attention during sermons: the fear-induced law followed by comforting gospel. Fear then redemption. Comfort—insane itching followed by calamine lotion. I leaned over and kissed her hair. “I’m dying.” Dramatic. Lifetime Movie Network. She pulled away. “What?” “You have…it?” I said. “It?” The guy behind me kicked my seat and shushed us. “You know.” I said. She shook her head, her hand holding my hairless chin. “AIDS,” I whispered. She laughed at me, and then checked my response. I had my “I’m serious” face on. She scoffed and stood up. Her thin body cast a shadow onto the screen. Guy behind us hushed a threat at her. Nikki said, “You think I gave you AIDS?” I shrugged. “Do you know how you get AIDS?” I shook my head. “Do you even understand what it is?” I shrugged. “You don’t have it. I don’t either,” she said, her body moving in sync with the giant Brittany Murphy onscreen. “You’re a clueless idiot.” She walked down the floor-lit aisle. I felt light, like my head was ballooning upwards and I held onto the ribbon string like a happy child. Throughout the rest of the rom-com, I wondered what else I hadn’t been taught, and what else I’d gotten wrong in my life. Nikki called that night. She’d been “sleeping with a few” of the JV football players; at first, my gut screamed now they have it! But then I remembered I knew nothing. Her cheating on me should’ve bothered me more, but I was too relieved that day. If I had gotten in contact with Magic, I think he’d tell me knowledge can subdue fear, and I like that. D. W. Anderson’s writing has been published in Colorado Review, Cream City Review, Flash Fiction Press, and his forthcoming novel, Drunk in the Warm Glow, will be released in fall 2016.
NEWSBREAK “Hakuna Truvada,” a new PSA promoting pre-exposure prophylaxis (PrEP), updates that endearing, bright and bubbly Lion King song for a good cause. The Elizabeth Taylor AIDS Foundation (ETAF) partnered with YouTube star Todrick Hall, The City of West Hollywood, and The Los Angeles LGBT Center to bring the musical message to the masses. The song, penned by Elton John and Tim Rice, has been adapted, but still boasts its original “no worries” vibe in the midst of struggle. Aiming to reach youth about the benefits of the latest HIV prevention tool, the PSA explains how Truvada as PrEP might be the answer for gay men who are sexually active. PrEP has been shown in studies to be up to ninety-nine percent effective in stopping the transmission of HIV if taken correctly. It’s not a subsitute for condoms, which can help prevent other STI infections. The PSA and social media campaign alert viewers to the need for increased HIV prevention: • In the U.S., gay men make up sixty-three percent of all new HIV infections, yet only one in three gay men have ever been tested for HIV. • Less than twenty-five percent of sexually active teens have ever taken an HIV test, yet youth ages thirteen to twenty-four account for over twenty-five percent of all new HIV infections in the U.S. • Based on estimates, one in two gay black men will be diagnosed with HIV in their lifetime. HIV incidence has increased by eighty-seven percent among gay black and Latino men. • Currently in the U.S., 1.2 million people are living with HIV but only about one in eight are unaware they are positive. Along with Hall, the PSA also stars Looking and Mean Girls actor and ETAF Ambassador Daniel Franzese [A&U, August 2015] and Kory DeSoto. Willam Belli [A&U, April 2015] plays a sexy nurse. Featured in the PSA is the new LA LGBT Center health clinic in
A&U • MAY 2016
photo by Sean Black
West Hollywood, which provides prevention services that include testing, texting initiatives, and access to PrEP, among others. The PSA encourages viewers to look into PrEP at their local health clinics. The Elizabeth Taylor AIDS Foundation, founded in 1991, supports organizations delivering direct care and services to people living with HIV/AIDS, as well as funds HIV prevention education and advocacy programs around the world. “When you look at the statistics and see that one in four new HIV infections each year occurs in those aged thirteen to twenty-four, it’s evident that young people aren’t paying attention to traditional methods of education about HIV,” said Joel Goldman, Managing Director of The Elizabeth Taylor AIDS Foundation, in a prepared release. “This PSA is a brilliant concept from the City of West Hollywood and Todrick Hall to break through the clutter and reach young people with really important information about HIV prevention. ETAF is thrilled to support initiatives like this.” To see the PSA on YouTube, visit: http://bit.ly/1QnL0CA. If you would like to help the campaign, share the message on Facebook and Twitter.
HIV & Aging Living longer with HIV/AIDS is now a possibility thanks to patient empowerment and the availability of a wide range of efficacious treatment options. But individuals living with HIV/AIDS may sometimes face particular struggles with health as they age, as well. The case of a seventy-one-year old man living with HIV and presenting with signs of Alzheimer’s disease is the subject of a research article by Raymond Scott Turner et al, and published in a recent edition of Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring. Researchers have long studied HIV-associated neurocognitive disorders (HAND). According to the NIH, when HIV enters the central nervous system (CNS), the virus can negatively impact nerve cells and thus nerves in control of attention, memory, language, problem solving, and decision making. Three different types of HAND that are recognized by American Academy of Neurology—asymptomatic neurocognitive impairment (ANI); mild neurocognitive Disorder (MND), which seemingly is the most common; and HIV-associated dementia (HAD)—vary in the degree to which everyday functioning is affected in the context of HIV-associated cognitive impairment. MND and HAD are both considered AIDS-defining illnesses; while HAD used to be more common, it is now less prevalent than the occurrence of MND, which has increased. HAART can have a positive effect on improving cognitive abilities, though some researchers have found that combination therapy that strongly infiltrates the central nervous system may also play a role in increasing the risk of developing HIV dementia. Overall, the scientific consensus points to HAART’s suppression of the virus to undetectable or near-undetectable levels as significant in preventing and treating HIV-associated neurocognitive disorders—usually, when HAART suppresses the virus in the blood it also suppresses the virus in the central nervous system. Now, with positive individuals living longer, the authors of the new study suggest that clinicians need to understand that progressive dementia in individuals living with HIV/AIDS may be HAND, Alzheimer’s, or a combination of both in order to make the appropriate treatment decisions. HIV infection that is chronic may play a role in increasing the risk factor for Alzheimer’s as a result of neuro-inflammation, accelerated CNS aging, and reduced cognitive reserve. However, more research is needed to establish this negative relationship. Turner and his research team concluded that the patient featured in the study may have mixed dementia, a combination of HAND and Alzheimer’s, but were not willing to rule out that it could be exclusively one or the other.
illustration by Timothy J. Haines
Nothing Compares 2 U Prince wrote at least two songs that addressed HIV, “Waterfalls” and “Sign O’ the Times” (and who can forget the lyric about condoms in “Little Red Corvette”?), and helped a generation realize that sex could be hot and holy, light-hearted and complicated, all at the same time. In that sense, he never lost the New Romantic spirit of his Revolution incarnation throughout the many high-heeled steps of his creative evolution. When he died last April, the multiple Grammy-winner and chart-topper left behind a musical legacy that will endure forever, but he also used his time on earth to sing out about social justice and support the empowerment of others. His faith made him quiet about his humanitarian efforts, but his friends have stepped forward to remind us that the concern for the wellbeing of the world was not just some empty rhetoric in a pop song. Among his accomplishments, Prince backed #YesWeCode, an initiative that helped underprivileged youth find their inner tech nerd; Green for All, a green energy and social justice advocacy group; and the charity, Love 4 Another, funded principally by Prince, has channeled millions of dollars to schools, shelters, and community programs across the country. MAY 2016 • A&U
by Ruby Comer
darlings, many a “power lunch” has been choweddown there! Dini’s compassion developed in her childhood. Her mother was ill most of the time and Dini was her primary caregiver. The eldest of three, Dini’s father died when she was three. “I’m a nurturer by nature”—I’ve heard Dini say this several times. We meet at noon at ABC Kitchen near Union Square, not far from where Ms. Ruby resided many moons ago in a loft with her artist boyfriend, Jimmy. Ah, those were hot days, but I digress…. Dini scoots up to the restaurant on her Broumpton bike, her primary means of transit around the Big Apple. She collapses the bike and schleps it into the eatery. We snuggle into a table near a large cement pillar. Ruby Comer: What a light, airy place. [Scanning the menu] Well…the eats here are so fresh and organic! [We peruse the menu.] Dini, what’s the main focus of Love Heals? Dini von Mueffling: Love Heals empowers young people to become leaders by instilling in them the knowledge, skills, and confidence to protect themselves and their communities from HIV. It is the leading provider of HIV and AIDS education in the New York City public schools. We so need this…. We believe that HIV and AIDS education is the right of every person and that it should be taught in a safe, neutral, nonjudgmental environment. We value
learning, diversity, respect for differing beliefs, tolerance, and individual empowerment to effect change both within the organization and without it. [Our waiter arrives and we order.] Ruby, this disease shouldn’t exist anymore. Unfortunately, it’s a disease that carries so much shame and stigma and yet, one hundred percent preventable! [She pounds her fist on the table with passion.] Communication is so important! The essential. To prevent it, you must communicate. Talking about sex and drugs is not easy. When Ali was alive she’d speak to young people and ask them to pledge to find a friend and commit to taking care of each other. These are honest lifesaving conversations. The other biggie is that making good decisions is tied into having good self-esteem. Not easy. One of our Love Heals programs, LEAP, gets A&U • MAY 2016
Ruby illustration by Davidd Batalon; photo by Benjamin Lozovsky/BFA.com
ini von Mueffling. With a name like that you’d expect the title “Lady” to precede it. Lady… Dini…von…Mueffling! Well, this gal is some lady, and she’s earned the title. Let me set you straight about my friend right now. Her name is pronounced Deenee Moof-ling. A native New Yorker, Dini is a former journalist who’s penned three books and co-founded Love Heals, also known as The Alison Gertz Foundation for AIDS Education. It’s been providing HIV education for over twenty years. Dini, Stefani Greenfield, and Victoria Leacock Hoffman founded Love Heals after their friend, Alison Gertz, died of AIDS-related causes in 1992. Dini met Gertz at a dinner in New York while both women were attending college. Alison was twenty-two when she was diagnosed with AIDS. She had become infected through a single sexual encounter. Alison became an activist, promoting HIV prevention at high schools and on college campuses. Soon after her death, Molly Ringwald portrayed Alison in the TV movie, Something to Live for: The Alison Gertz Story. At the end of the film’s credits, an AIDS information number appeared. My source tells me that it generated nearly 200,000 calls within twenty-four hours, mostly from women. The film stands as one of the important films of that era, along with Early Frost, Parting Glances, Longtime Companion, And the Band Played On, and Philadelphia. Establishing Love Heals was a means for the women to honor Alison and keep her mission alive. Since its founding, Love Heals has reached more than 700,000 people. On May 3, the annual Love Heals gala was held, once again, at New York’s legendary Four Seasons Restaurant. The restaurant, which opened in 1956, will soon be closing its doors. Believe me, my
DINI VON MUEFFLING
My…a very big task indeed. What’s the one thing you remember about Alison that stands out? Her incredible passion for helping others to ensure that what happened to her would not happen to others. She was such a good friend. She was always so worried about how we were doing. Any one of us could have ended up like Ali, but for the grace of God…. Thank the Lordie! [Dini chows down on her fluke sashimi, while I dip into some roasted sun chokes—Jerusalem artichokes.] So the demographic of Love Heals is young folk. Oy! Difficult. Raging hormones, rebelliousness, peer pressure, and authority issues. How exactly do you make them listen? There are several ways we reach our target audience. First, we try to match our speakers to our school’s demographic. In largely Black and Latino neighborhoods, the speakers are also Black and Latino. Second, our speakers are trained to answer any question. Young people have very finely tuned BS detectors. If someone is lying, they sense it. If we tell the audience that abstinence is the only way to prevent HIV, we’d lose them in five minutes. [Dini pauses and takes a short calming sigh.] You can hear a pin drop when our speakers take the stage, even in a packed room with teens. They have a powerful message.
I just got chills, Dini. [I fork a mouthful of my roasted Kabocha Squash Toast, a mix of ricotta, onions, maple syrup, and apple cider vinegar.] Say, do you remember when you first heard about AIDS? I remember my mother talking to
asked my mother to donate.
Whom do you consider champions in the epidemic? The everyday champions are those who are living with HIV, trying to protect others, and those who volunteer for the cause. [She ponders while taking a bite of her kale salad.] That said, President Bill Clinton, Bono, and Elizabeth Taylor are champions. All three have done tremendous work in the field of AIDS and all stand out in their own way. Dame Taylor was extremely gracious. I cold-approached her in a restaurant Alison Gertz’s twenty-seventh birthday at Tatou Nightto thank her for her club. 2/27/92. From left to right: Alison Gertz, Dini von work. Bono was Mueffling, and Victoria Leacock Hoffman a delight and he kissed my hand! [Dini cracks a colossal smile and her big browns sparkle.] President Clinton is the most charismatic person I’ve ever met. He truly makes you feel like you’re the only person in the room when you’re speaking with him.
me about our family dermatologist, Dr. Friedman-Kein—whom I loved because he told me that Katharine Hepburn had bad eczema just like me. He said that this made me an extra-sensitive person. Back then AIDS was called GRID [gay-related immune deficiency] and he was raising money for research since so many people he knew were dying. He
The man’s dashing! Dini, your motto has always been “Turn fear into love.” Can you elaborate? Nope. I want everyone to think about what it means. One hint: it works. To connect with Love Heals, log on to: www. loveheals.org or contact the organization by phone at (212) 867-1117. 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 2016
photos by Victoria Leacock Hoffman
girls together every week to help them learn how to prevent HIV and also how to love themselves.
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Hi Justin— I really like your column and I read it when you post it on your Facebook fan page. But there is something that you’ve yet to talk about and I want to bring attention to it, only because I may have questions about it that some others have as well. I don’t live near a big city or have really great Internet connection where I live, but the subject that I was looking into is the Zika virus. It seems that it is getting more and more of a problem and it scares me. I’m HIV-positive and have been for twenty-eight years. I’m doing well and am thriving. But being alive during the early stages of the AIDS crisis, it scares me that the Zika virus will be the second coming of a virus that will affect the gay community. What do you think?Also has anyone who is HIV been infected with the Zika virus yet? Are we as HIV-positive people more susceptible to catching the Zika virus? Please help me. —Country Boy THANK YOU! FINALLY! I’ve been waiting on a question about the Zika virus for a while. Let us start by giving my readers some brief information about the Zika virus. The Zika virus is primarily
spread through the bite of the infected Aedes species mosquito, which also spread the dengue and chikungunya viruses. A pregnant woman can also pass the Zika virus to her unborn child, which can cause microcephaly (a condition in which a baby’s head is significantly smaller than expected, often due to abnormal brain development). At the time of delivery, the Zika virus can also be spread from mother to child. The Zika virus can be spread by a man to his sexual partners. There are cases known today where the Zika virus has been sexually transmitted by men who have developed symptoms of the Zika virus. Researchers have found out that the Zika virus can be spread before and after the men showed any symptoms. Scientist have found that there is a case in which the Zika virus was spread a few days before symptoms developed. The Zika virus is present much longer in semen than in blood and if you have been infected by the Zika virus, you are likely to be protected from future Zika infections. The Zika virus currently has no vaccine. In May of 2015 the first case was recorded of autochthonous Zika virus transmission in a thirty-eight-year-old HIV-infected patient who was born and is living in Rio de Janeiro, Brazil. The
Brazilian researchers also have found the Zika virus in urine and saliva but are now unsure if it can be transmitted in that way. I do think that gay men might be more susceptible to being infected with the Zika virus because one of the ways it is carried is through semen. In the case of the Brazilian patient who is infected with both HIV and the Zika virus, the CD4 count (619) and viral levels (undetectable) of HIV remained the same for four weeks after the patient was infected by the Zika virus. Presently, researchers are engaging in more scientific studies to increase knowledge of the Zika virus and whether or not there is potential of another viral epidemic. Symptoms of the Zika virus can last up to a week, and they can include fever, rash, joint pain and conjunctivitis (pink eye). We need to be proactive about finding more about the Zika virus and to not take it lightly. We need to protect ourselves as efficiently and effectively as possible. That protection should be based on education and awareness. In the gay community we have seen such strife and loss and do not need to have another epidemic. We need to make sure that persons in power take us seriously as not only citizens of this country but as human beings. ◊ A&U • MAY 2016
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.
Join Maitri to Celebrate 4pm Sunday, May 1
at Mission Bay Conference Center-UCSF 1675 Owens Street San Francisco, CA 94158
BLISS 2016 Maitri’s Signature Gala and Auction
With Special Guest Leslie Jordan
Emmy awardwinning Actor and Comedian
Maitri Compassionate Care is pleased to announce that Emmy award-winning actor and comedian Leslie Jordan will host this year’s BLISS gala and auction! Leslie Jordan is well known for his success as a dynamic comedic actor, in particular for his roles in “Will & Grace” and “Sordid Lives”. He has enjoyed rapturous reviews for his original stage plays (including “My Trip Down the Pink Carpet”), his roles in the off-Broadway production of “The Lucky Guy” and the hit movie “The Help,” and his HBO special, “Pink Carpet”. But this witty Southern Gentleman, born and raised in the conservative Bible Belt of America, is also an esteemed and generous advocate for equal rights. On Sunday May 1, join Leslie Jordan, the Man Dance Company, jazz vocalist Branice McKenzie, guitarist Andre Morgan and other fabulous guest artists in celebrating the healing power of joy.
Tickets to BLISS—Prescription: Joy are now on sale at www.maitrisf.org
Performances by Guitarist Andre Morgan, Jazz Vocalist Branice McKenzie and Man Dance Ballet Company
Maitri is the only AIDS-specific residential care facility in California since 1987 focusing on the underserved community of those dying of or severely debilitated by AIDS. JULY 2015 • A&U 27
Which Is Worse?
few years ago, I had a doctor’s appointment and as usual my Pastor and his wife took me to my appointment. Now, everyone knows that going to the clinic to get an update on your HIV status is a challenge, especially when you are scheduled to see a new doctor. As I was checking in, the woman who was checking me in was very rude and unfriendly. I didn’t think much of it. After all, it is an HIV/AIDS clinic and some people are just plain rude. As the nurse called me to the back, the worker decided to involve herself in a conversation with my Pastor. For Pastor Davis, sharing hope, faith, and love to everyone is his life and if given the opportunity he will do just that. This particular worker asked why they would want to be seen with me at the clinic. However, she was not the first person to ask this question and I’m sure that she will not be the last. However, she was the first (in a clinic setting) to prejudge me as being a woman who slept around or a drug abuser. My Pastor informed her that I was neither. Then she said “she had to have been doing something because that is why she is in this clinic.” At this point, my Pastor’s wife stepped in and educated her real quickly, but nicely. Also, she told her that I was three years-old, having open heart surgery, and given infected blood. Now, this shocked the young lady and she stated “poor child.” When I came out of my appointment, she was totally different toward me. She acted as if she felt sorry for me and I didn’t know why. When I got in the car I was told what happened. I sat back in the backseat feeling thankful that I had people to defend me even when I am nowhere around. However, at the same time, I felt furious that this woman works in this industry with a judgmental mind. I don’t know which is worse, being judged or someone having pity on me after they find out my life story. Tonight, as I am sitting here thinking about this incident, it has me wondering: Which is worse: to be judged or to be pitied? If a man grows up and turns out to be gay, so many people are quick to judge him for his preference. However, if he tells them that he was raped as a child that same
living with hiv/aids should not have to mean being caught between a rock and hiv stigma
judgmental person looks upon him with pity in his/her eyes. So, which is worse? I’m not saying that all men who desire to be with another man were raped; some just truly desire a man over a woman and that is their choice and I feel that their choice should not be built on another person’s standards. If a woman is on the street prostituting herself she is quickly called a whore and beat upon by others whether physically or verbally. Nevertheless, if she tells someone that she was kidnapped and forced to sell her body, that same person no longer judges her but now looks at her with pity in their eyes. The saddest part is that they could be the same person who abused her body by being a customer while never taking time out to look at their own actions. Keep in mind, that I am not saying that all prostitutes are among those who were kidnapped and forced into sex trafficking, but I am saying that there is a thin line between judging someone and at the same time pitying that same person. So, again I ask: Which is worse? Being HIV-positive should not mean that a person should feel ashamed of themselves. It should not mean that they should endure hardship and disrespect when they attend their medical appointments. HIV-positive people are only people like so many living with a disease. The difference is the type of disease they are living with. When a cigarette manufacturer packages its brand of cigarettes, it places a warning label on the package to alert the consumer of the possibility of the danger(s) the product may cause. Later on in life, if the doctor informs the consumer that smoking has caused damage to his or her lungs, the individual is immediately shown love and they are consumed with prayers. However, this is not always the same circumstances for a person diagnosed with HIV/AIDS. Oftentimes, people living with HIV/AIDS are criticized, judged, and sometimes condemned. People diagnosed with HIV/AIDS are more likely to go into hiding because of the stigma attached to this disease. So many people have different views on HIV/AIDS, including those living with the disease, who have their own beliefs about HIV, to the point that they lack support from another just because of their own
views towards the next person living with the same disease. If we don’t change how people view HIV then we will never conquer AIDS. In order for us to have an AIDS-free generation we must end stigma and to end stigma we must start with ourselves and with those who care for people living with HIV/AIDS. So, I ask again, which is worse—being judged or being pitied? For me, I believe that in a way, they both have an equal value of disrespect. Nevertheless, if I had to choose one, I would choose pity. I choose pity because with pity there is some room for hope, for change, for growth and for support. Usually, when one is judged they are condemned and pushed away but people will gravitate to those they pity. Although one may look at you through the lens of pity (because this is their only way of understanding love) you have the opportunity to walk in my Pastor’s shoes by making this the moment to share hope, faith, and love with everyone. However, we can make a huge difference in this aspect because we can live a quality and prosperous life that will make the other person adjust his or her lens of pity to help him or her see you clearer. When these individuals look closer they will find that strength, endurance and life abide within you. You can do this by constantly asking yourself, “What would Jesus do?” and, when you obtain your answer, “just do it!” #EndstigmaNendAIDS Tyeshia Alston is an HIV-positive AIDS activist and educator living in Dallas, Texas. Ms. Alston strives to build hope, increase faith, and encourage others to live their best life. Ms. Alston is a mother of a handsome two-year-old boy. She is driven to educate others about HIV/AIDS by creating community awareness programs and providing HIV/AIDS services through her organization, SAAVED INC. Ms. Alston, has traveled to Washington, D.C., to speak with legislators about better healthcare access and how the disease has impacted communities which she serves and has served on panels for National Minority AIDS Council and other local organizations. Lastly, she is known to others by bringing her message to local talk shows and radio stations, working to do her part in ending AIDS. To learn more about Ms. Alston’s work, go to www.saaved.org and if you have any questions or comments, please feel free to email her at firstname.lastname@example.org. A&U • MAY 2016
Small Minds Discuss People by Connie
came to the conclusion during the whole debate about same-sex marriage that my mother was wrong when she taught her children that all humans are created equal. I grew up thinking that I was no better or worse than the next person as long as they upheld basic common courtesy and sense. It should not take much more than utilizing those two essential human abilities to be worthy of being treated equally. Unfortunately, things like money, gender, sexuality, and ethnicity are the deciding factors of equality, and those are the absolute worst things to use as a base of someone’s worth. Instead of judging others based on their character and thus empowering future generations, some people spend their whole lives being consumed by the sex of everything. From birth, the first words out of the doctor’s mouth is “It’s a….,” setting into motion a whole slew of preconceived notions about who and what this human is and can one day become. We can only pray to our creator that one day the rest of the world decides to stop being ruled by the sex of things and decides to start being governed by the brain of things. Oklahoma is putting Senate Bill 733 up before their State Legislation for a vote, and it includes this item, “Infectious diseases; requiring submission of certain documents before issuance of a marriage license.” SB 733, introduced by Oklahoma Sen. Anthony Sykes (R), is a bill that stipulates: “The State Board of Health shall require a blood test for the discovery of syphilis and other communicable or infectious diseases prior to the issuance of a marriage license.” To prove they were tested, any couple wanting a license would be forced to supply a certificate or affidavit from their personal physician that confirms they are neither one infected with a disease that “may be communicable to their partner” to obtain a license. At this point, the way the bill’s written out, if either test positive they may not be allowed to get married. The key word here is “may.” Oklahoma lawmakers are still trying to regulate marriage in other ways, too. They recently approved a bill that would punish local or state employees from
why are discrimination & stigma still happening in small-town america
issuing marriage licenses to same-sex couples. So what may be happening with SB 733 is a way to hunt down the “gay” population, since a recent report even states that about half of gay men are at risk of becoming HIV-positive, what better way to find them and prevent them from marrying. That is if their plan to ban marriage licenses falls through. That is only my opinion, of course, but it doesn’t take much to connect those dots. Here again, ruling their tiny part of the world because of sex. These are the people making laws for our nation, and all they care about is sex. The only part of that bill I like is the part about getting everyone tested because that would be using our brain thing, finally.... We do not need to infringe upon someone’s medical rights to do this, though. Change the wording on a patient’s annual physical to say, “You must opt out of the full panel STD test” and voila! Boom, done, everyone’s tested. “Great minds discuss ideas, Average minds discuss events, Small minds discuss people.”—Eleanor Roosevelt. Why are we voting small minds into office? What I would like to see happen is a combined effort to enact certain changes that will ensure that the events surrounding my infection with HIV don’t happen to another young person who thinks they are not at risk of catching HIV because they aren’t living a risky lifestyle. If we want to see a better future we need to begin teaching our children the things we do not want to discuss. Gone
should be the days of taboo talk around the fireplace. Here should be the days we are discussing those topics with honesty and a willingness to shine a light on them and force the truth to come so that our children will begin to live in a time of great understanding and acceptance. We preach knowledge as power, then hide the topics that will help them grow as humans. We need to stop hiding the issues that will keep them safe, because with education comes understanding and the ability to protect oneself from anything. If Oklahoma is allowed to pass this bill, it will set a precedent for more discrimination based on sex. We should face these cases with an unwillingness to even debate them. But it will only stop if we force people to start using their brain and thinking about things that matter and stop thinking about only sex. There is more to this life than the sex of it. There is the living it. Connie Rose acquired HIV at nineteen years of age from her husband because she didn’t ask for an HIV test before they married, and if he did know he didn’t tell her. Forty-one, Connie Rose is a mother and grandmother living in Las Vegas, Nevada, changing the world one blog at a time. When she is not writing for multiple ticket venues, including the Vegastickets website, she manages and writes for her own website, Livingpos.com, an information and blogging site dedicated to the four H’s in the STD community. She also is an advocate in her local community and on social media. Follow Connie Rose on Twitter @Cricketlv. A&U • MAY 2016
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other men for love, sex, or something in between had undergone a technological revolution. Further complicating matters, I hadn’t been in a gay bar or club in about eight years; I had no desire to. And, if I did, it wouldn’t be in this small city, no way. I was a card-carrying circuit boy in my earlier years and my standards were high and my snobbery an albatross. What’s a guy to do? I had just recently broken down and purchased a smart phone! I’m also a bit tech-phobic. It was a much younger gay friend who wore me down and patiently explained what a social app was and did in the first place. He made it crystal clear for me. If I didn’t get on one of these apps, and soon, I was destined to die celibate and alone far past my sell-by date. The time had come for action! First thing on the schedule, pictures. I’ve never been comfortable in front of a camera to say the least. So my young friend (I’ll call him Ed) got together at my place with a couple of bottles of Chardonnay. We actually did ok. Months of a low carb diet and a brutal running schedule had paid dividends. We kept it fairly clean, some shirtless pics and a shot or two of what men say is my best
feature, my bubble butt. Again, those runs had done well by me. I had already experimented with some selfies and had figured out some good facial angles. My new beard, I felt, would be quite a hit. Everyone loved it. Then Ed showed me the apps. I felt I should ease my way in. Grindr scared the living daylights out of me. I didn’t see many guys beyond the age of twenty-five. I knew enough to know that forty-five year-olds like me were undergoing a renaissance. GROWLR looked interesting. I had always been a bear by default and there were plenty of men around my own age. Standards weren’t unrealistic either, it was as good a place as any to start on my self-imposed social experiment. Then, the proverbial other shoe drops. It’s not just fun and games anymore. I’m HIV-positive, no small thing. When does that enter the conversation, and how? It’s a scary new world in more ways than one. To be continued... John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for twelve years.
illustration by Timothy J. Haines
hen I packed my belongings and escaped Los Angeles for my hometown, I needed a break. A break from an unhealthy and dysfunctional life. A break from a failed relationship hanging on by codependency and a beautiful condominium. I needed to get healthy and find myself before I could hope for a stable relationship. We loved each other dearly, still do in fact, but it was time to let go and rebuild from the bottom up. I was ready to go it alone and was in no rush to date again. This included sex, but seemingly gone were the days of a hook-up for me—I desired real intimacy before I got off. The rules had changed. Dating in the age of the Internet held no attraction for me anyway. In my salad days, I loved nothing more than going to a bar or club and engaging in the hunt. A sense of a man’s personality and history were always necessary for me. I needed an exchange of ideas, a man’s scent, an idea of who he was and what drove him, a real idea of his physicality as well as his personality. This could be quick and furtive when it needed to be but it needed to happen to get me off. If we could engage in some pre-game spit swapping, all the better. The way a man kisses says a lot about how he’ll be in bed. So, I took a long four-and-a-half years going it alone. Not a date, not a trick, nary a conversation with a man I found attractive. I found myself in a city with a dearth of date or sex-worthy gay men so the temptation wasn’t overwhelming. And frankly, the idea of meeting men online scared me. It was so far out of my comfort zone. Then, a year ago this past fall, it was time. I was ready to date, battle-scarred, but confident. And, to put it mildly, I was horny. Seriously horny. I could imagine hooking up for some good, old-fashioned anonymous sex. Or, a date. My messages were seriously mixed, but I knew one thing for sure: I was ready to take the plunge. It was time. There was a major obstacle though, the world of meeting
meeting men when your phone is smarter than you...
A&U • MAY 2016
S.T.A.G.E. June 18
2 PERFORMANCES • 2pm & 8pm SCHEDULED TO APPEAR
Cortes Alexander • Susan Anton • Alexandra Billings Mary Jo Catlett • Carole Cook • Loretta Devine Barrett Foa • Davis Gaines • Alvin Ing Branden James and James Clark • Allison Janney Jean Louisa Kelly • Vicki Lewis • Andrea Marcovicci MaryJo Mundy • Madison Claire Parks Tedd Szeto • Bruce Vilanch • Lisa Vroman AND MORE TO BE ANNOUNCED !
STAGED AND DIRECTED BY
DAVID GALLIGAN MUSICAL DIRECTION BY
MICHAEL ORLAND CHOREOGRAPHY BY
LEE MARTINO Wallis Annenberg Center for the Performing Arts Beverly Hills INFO AND TICKETS
www.stagela.com STARRING SPONSORS
Elgart Aster & Paul Swerdlove | MEDIA SPONSORS
When the Mask Comes Off we need to address depression to save our lives
depression has a direct correlation with another issue within our community: suicide. Selfish (of a person, action, or motive): lacking consideration for others; concerned chiefly with one’s own personal profit or pleasure. Suicide may be many things and have many different descriptions but I want to emphatically say that one thing that it is not is selfish! Far too often, I hear suicide directly coincide with this word and I feel that there needs to be some understanding around it. People take the “lacking of consideration for others” piece of the definition and run with it. Suicide is not about others. It many times has nothing to do with anyone else. It is not a decision made with the worry about how others will feel after you are gone. Many times suicide occurs out of a feeling that people would be better off in a world that did not include them. The mask and suicide go hand in hand. We are often left trying to wrap our head around what went wrong. Thoughts and memories of the good times we shared with a person. Hundreds of pictures with smiles from ear to ear never once giving the inkling that something else was going on. Unfortunately, the pictures and memories were all with the face of the mask being worn. It is almost like taking a picture with a person wearing a happy-face costume all day while secretly crying and in pain underneath. Showing the world one thing while in the “alone” moments being something totally different. I don’t think I was ever truly close to committing suicide, but I can honestly say I understand how at times things can seem so bad that suicide becomes an
option. The problem with suicide is that it is a permanent decision for a momentary event. It is a decision that if thought about for an hour longer or even a minute longer could have a totally different result. I recently lost a friend and this is the first time I am choosing to talk publicly about it. I think many of us went through the “what could we have done?” and “what did we miss?” phase of grief. I am finally in a place of understanding that it was the mask that we missed. Partially because we didn’t see it, partially because we each may have been wearing our own mask. If nothing else, I want this piece to bring healing and understanding of suicide, depression, and the dangers of putting on the mask. At some point the mask has to come off and we must be willing to live with whatever lies underneath it. My best advice is to start addressing the problems the mask covers up and to ask for help if you need it. RIP, friend. We will continue to carry the torch and fight for what you stood for. No Excuses. George M. Johnson is an HIV advocate who works for Us Helping Us, People into Living located in Washington, D.C. He has written for Pride.com, Musedmagonline.com, Blavity.com, Rolereboot.org, and Ebony.com. Follow him on Twitter @IamGMJohnson. A&U • MAY 2016
illustration by Timothy J. Haines
any of us walk this earth as wounded warriors. Battered by the blows of society’s devaluation of the black body while we fight against the lack of acceptance of our lives based on the color of our skin. Shackled by these systems of oppression, it is truly by the grace of the higher power that many of us are able to get up every morning with the odds stacked against us to face the world. Boldly, Bravely, and Unapologetically. Each morning many of us follow the usual routines. Washing our hair, brushing our teeth, and picking out what we will wear to work that day. Checking for our phone, keys, and wallet or purse as we make a mad dash to head to work. Before exiting our homes, we all make sure that one more thing is not forgotten before we make our way out the house. We look in the mirror, take a deep breath and put on the mask. The mask is used to cover our pain. It is the face we put on in the boardroom when we are the only black person in the meeting. The mask is what we put on we find out that we are HIV-positive and have to return back to work as if nothing ever happened. The mask is the beautiful smile that we put on in pictures and with our friends as we laugh louder to hide the internal crying going on inside. We often head home after events, hanging with friends or just a long day at work to unwind. It is during that alone time that we have to take a look in the mirror and see if we can continue to accept the mask that we wear or if it is all just too much. Depression is a real thing and is very much prevalent in the black community. Classified as a part of mental health, depression is one of those things that people assume you can just “snap out of.” As if depression is simply linked to just having a bad day, week, or it just not being “your season” for the blessings. The problem with this logic is that we fail to acknowledge that depression is a mental health condition that many need some form of therapeutic intervention to combat or even medication to help a person get through their day to day. Furthermore
Bringing hearts together since 1998
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dolls of hope Professor Cynthia Davis uses dolls to break the silence surrounding HIV and AIDS by Alina Oswald
photographed exclusively for A&U by Sean Black
ometimes a doll can be a little girl’s best friend. It can be her most trusted friend, companion, and help her make dreams for her future adult life. As it turns out, dolls are not only for young girls, but also pretty much for anybody in need of having something to hold, and maybe to hold on to. Professor Cynthia Davis is an Assistant Professor and Program Director in the College of Medicine and College of Science and Health at Charles R. Drew University of Medicine and Science, in Los Angeles, California. She holds a master’s degree in public health, and received an honorary doctorate degree in humane letters. Professor Davis has also served on the Board of Directors of AIDS Healthcare Foundation for twenty-seven years. When she was a child, her mother could not afford to buy her dolls. And so, when she had a daughter of her own, she made sure her daughter had dolls to play with. Over time, she realized that she wasn’t buying dolls only for her daughter, but also for herself. She started collecting dolls some thirty-one years ago, and now has almost 2,000 dolls in her private collection. Professor Davis doesn’t only collect, but also makes dolls. She has also been an HIV and AIDS activist almost from the begin-
ning of the pandemic. “I was recruited in 1984 to start a state-funded teen pregnancy prevention project for Charles R. Drew University,” she explains over the phone. “And it was right about the time when there was a lot of hysteria about HIV. So, I was forced to learn about HIV, since it was sexually transmitted, so that I could incorporate it into the education [courses] that I was [teaching]. The schools where I was implementing HIV and family life education [sex education] classes were middle and high schools in South Los Angeles. And I got linked-up with a very well known advocate, and I actually brought him into the classroom, because I was teaching about HIV and STDs, so the kids could put a face to it. The rest is history.” The well-known AIDS advocate she brought into her classroom is no other than Phill Wilson [A&U, February 2014] of the Black AIDS Institute. “Phill Wilson had founded the Black AIDS Institute back in 1984 and 1985,” she adds. “He was a community activist and advocate living with HIV.” She recalls Wilson telling students that HIV could happen to them, too, and that they needed to be educated and informed about the virus, in order to protect themselves from getting infected.
A&U • MAY 2016
And that was how it all started. She got fully engaged in doing HIV-related work, primarily in the at-risk, medically underserved population. Soon, her love for dolls came in handy. In 1998 she started the Dolls of Hope Project as a World AIDS Day activity. The theme was “Youth Being a Force for Change.” She came up with the idea for her doll project during her frequent travels around the world. She would notice the impact of HIV and AIDS on children, women, youth, and also entire communities. While visiting AIDS orphanages she became aware that many children did not have any toys to play with. So, why not make dolls to give them, to help comfort them? She received a small grant from a pharmaceutical company, and contacted a master dollmaker she’d met at a community marketplace. They ended up meeting with volunteers on a weekly basis, making dolls for up to nine months. “The original dolls were called ‘Sista Dolls’ and they had wings sewn on them,” Professor Davis explains, “as well as a message of hope written on a piece of paper by someone who made the doll, and which was attached to each doll.” She then wrote and sent out about 100 letters to agencies, to let them know about the project, and that she wanted to mail these dolls to children or youth living with HIV. Some thirty agencies responded. And that’s how the Dolls of Hope Project began. There was a dedication ceremony on World AIDS Day 1998. A couple hundred people attended the event. “Well,” Professor Davis adds, “the volunteers who were making the dolls got so caught up in the program that they didn’t want to stop the project. And so the project now has been operational for about seventeen to eighteen years.” It is funded by private donations, and, through this project, some 6,000 handmade cloth dolls have been distributed to AIDS orphans, women, and youth from around the world, all affected by the virus. Dolls, in the context of HIV and AIDS, do help break the silence surrounding the pandemic, and also the associated stigma. Also, in itself, the dollmaking process can
also be therapeutic. When she first started teaching dollmaking workshops, helping people learn how to hand-make dolls, Professor Davis would begin the workshop with a brief HIV 101 presentation. Some of those attending the workshops—mostly women, but also men—were living with HIV. Others were not. During the course of the workshops, they all got to bond, to connect. And so, oftentimes, women who had the virus would come out about their status. And they were accepted, because the bond was already there. That was early on in the project. Today, Professor Davis rarely conducts an HIV 101 presentation before the classes, and she does so only if such presentation is requested by the agency sponsoring the workshop. Each doll is unique, and it takes about forty-five minutes to an hour to make one. The doll is stuffed with a very soft fiber similar to cotton. The hair is made out of yarn of different colors. “My daughter used to paint the faces on each doll for me,” Professor Davis says. “But when she moved away to attend college, I had to learn to paint on the faces. Now, I am pretty good at it.” Dolls usually wear very
bright, colorful outfits, and also shoes. Dollmakers can get quite creative in adding earrings and other jewelry, and so on. When visiting Zimbabwe, Professor Davis noticed that the country had a large number of AIDS orphans. The government would set them up to reside on farms. Having no other toys to play with, children would play with rocks, in the dirt. So she decided to give them dolls, so that they could have something they could call their own. When the earthquake hit Haiti, Professor Davis sent out up to 100 dolls to children, so they could have something of their own, something to hold. It turned out that women who’d lost their children in the earthquake wanted those dolls, too, for the same reasons. “The organizer of the trip to Haiti told me the story,” Professor Davis reemphasizes, “about women grabbing dolls from some of the children in Haiti who were to receive the dolls so that they could have a doll to hold on to. It was a very sad situation.” Recently, Professor Davis was asked to curate the 35th Annual Black Doll show in California. (The Annual Black Doll Show is a tradition that started in the forties, inspired by the Black Doll Test, which showed that African-American children would choose to play with white dolls over black dolls.) And so, Professor Davis decided to use dolls, and use trench art as a
A&U • MAY 2016
A&U Gallery theme for the exhibit. During World War I, soldiers would be forced to stay in trenches for long periods of time. And they would use shrapnel and metal to make pieces of art. After the war, some of that art became collectible items. Recently, Professor Davis found out that the term “trench art” is used to describe “any decorative item made from the debris and/or by-products of modern warfare.” Hence, she called the show “Trench Art Retrospective: The War Against HIV/ AIDS–Women of the African Diaspora in the Trenches” because a more recent war we’re fighting is that against HIV and AIDS. The show opened at William Grant Stills Arts Center in Los Angeles, California, and ran from December 12, 2015 to February 13, 2016. Several hundred community residents came to the exhibit as well as to the HIV/AIDS educational programs incorporated into the exhibit. “The Trench Art Retrospective” show “represents the curator’s involvement with local and internationally renowned artists over the past thirty-five years, highlighting the battle she and the community at large have been engaged in to elevate awareness about HIV/AIDS, to enhance primary prevention interventions targeting at-risk populations as well as the general public, and the ongoing
MAY 2016 • A&U
battle to ensure that adequate resources are being made available to under-resourced and low-income communities to combat the HIV/AIDS pandemic, and more importantly, to ensure that people living with HIV have complete access to lifesaving antiretroviral drugs.” Professor Davis invited visual and installation artists to feature their artwork in the show, which, in turn, ended up including a very diverse and mixed collection of art. Among the artists whose work was featured in the show were Ofelia Esparza, an installation artist best known for her thirty-plus years of Dia de los Muertos altar installations; Bernard Stanley Hoyes, a Jamaica-native visual artist who came to the States at the age of fifteen; and also Allyson Allen, award-winning master African-American quilt and doll artist. Professor Davis plans on taking the show on the road, across the country. “I plan to be in Oakland, California, in late May or early June working with a non-profit called W.O.R.L.D. which serves women living with HIV/AIDS,” she says. “Myself and two other artists will conduct a three-day workshop
where the women will make dolls as well as make altars which will be placed on display at one or more venues in Oakland to heighten awareness about HIV/ AIDS’ impact on women from the African Diaspora.” The show will then travel to Jackson, Mississippi, Florida, New York and Washington, D.C., with the project collaborating with local AIDS service organizations. “One person can make a difference,” Professor Davis says, speaking about the role the show offers, and that is to break the silence around HIV and AIDS, but also speaking about the overall fight to end the pandemic. “Even though I haven’t done this on my own,” she adds, “it’s so important in the fourth decade of the HIV pandemic that we still come together to eliminate the stigma and homophobia. HIV is no longer a death sentence, but in my work in the community, there are still people who do not know their HIV status. There’s still a lot of fear. There’s a significant amount of stigma that’s still associated with the disease. You need a basic understanding about [this virus]. If you’re sexually active, [you need] to [get] tested on a regular basis. You need to know your status.” She adds, “I’m using art to eliminate some of these barriers and to bring the community together, so that we can have a dialogue, to support people and their families living with HIV and [do] what we need to do to prevent ourselves from [contracting and transmitting] a preventable disease.…I mean, HIV is 100-percent preventable.” To learn more about the amazing work of Professor Cynthia Davis, please visit https://about.me/ www.dollsofhope. To learn more about Dolls of Hope Project, go to www.cdrewu.edu/community/pro/Dolls. To find out more about the 35th Annual Doll Show, check out Tom Nguyen’s blog: www.enclave.la/2016/01/07/35th-annual-blackdoll-show-empowers-women-of-color-to-breakthe-silence-on-hivaids-in-black-community/. Alina Oswald is Arts Editor of A&U.
SEEKING JUSTICE Attorney Kylar Broadus , Founder of Trans People of Color Coalition, Works to Protect the Civil Rights of the Transgender Community by Lester Strong photographed exclusively for A&U by Alina Oswald
ransgender”—a term that was only a blip in the consciousness of most people barely a decade ago yet today is splashed throughout headlines in print media as diverse as newspapers, magazines, and tabloids. Trans people from Laverne Cox [A&U, June 2014] to Cait Jenner seem to be everywhere on TV, from reality shows to talk TV. And this year one transgender performer, Mya Taylor, won a Best Supporting Actress Independent Spirit Award for her role in the movie Tangerine. Beyond the apparent glam and glitz promoted by popular media about a few individuals, however, the true reality for many trans people can be quite a bit grimmer. Problems can range from social ostracism to civil rights to job protections to bias attacks to murder to healthcare—of which AIDS is most definitely an issue.
This can be especially true for trans people of color. Enter Kylar Broadus, lawyer, activist, and founder of the Trans People of Color Coalition (TPOCC), who himself transitioned in 1994. “The problems can be pervasive, and the consequences quite severe, depending on the individual,” said Broadus when interviewed for this article. “I became a lawyer so I could represent myself in a job discrimination case after I was fired due to my transition and couldn’t find anyone else to help me legally in
court. I lost the case because in those days not only was there no legal protection aimed specifically at meeting the needs of trans people, but there was very little awareness of what those needs involved.” He added: “There’s still not much legal protection today. Trans people are covered in a general way by existing anti-discrimination laws, but not many courts realize this. We need more education about our needs, and more specific laws on the books. We need to come together as a group and be at the forefront of working A&U • MAY 2016
out our own strategies for gaining greater social acceptance and legal protections.” Broadus himself has been at the forefront in seeking to remedy those problems. Among his many activities: From 1997 to 2013, he maintained a law practice in Columbia, Missouri, where he represented transgender, lesbian, gay, and bisexual clients in family law, criminal law, and other legal areas. In 2010, seeing the need for a national organization dedicated specifically to the civil rights of transpeople of color, he founded TPOCC. As a member MAY 2016 • A&U
of the city of Columbia’s Human Rights Commission, he helped secure the passage of an amendment to the City Code in 2011 protecting transgender people’s rights. He’s a board member of the National Black Justice Coalition, and from 2007 through 2010 served as its board chair. He has served as the senior public policy counsel at the National LGBTQ Task Force, as well as the director of its Transgender Civil Rights Project. He also served as state legislative manager and counsel for the Human Rights Campaign, working
with legislators around the country to pass LGBT-inclusive legislation. He has written numerous articles and contributed to books on transgender and black American LGTBQ issues, and delivered talks and lectures at many college and conference venues. And in 2012, he was the first trans person to appear before a U.S. Senate committee, speaking in support of the federal Employment Non-Discrimination Act (ENDA), which would prohibit job discrimination nationally on the basis of sexual orientation and gender identity.
Broadus has also received recognition from several quarters for his work: He was one of those interviewed in filmmaker Kortney Ryan Ziegler’s 2008 documentary STILL BLACK: A Portrait of Black Transmen; in 2011 he was given the National LGBTQ Task Force’s Sue J. Hyde Award for Longevity in the Movement and the Freedom Center of Social Justice’s Pioneer Award; and in 2013 he was included as one of Out magazine’s OUT100, an annual list of the year’s most compelling LGBT people. Asked during the interview for this article to expand on the issues facing the transgender population, Broadus replied: “First off, there can be confusion about what’s going on in your feelings. This may be less of a problem these days because there’s so much more information available about transgender people. When I was growing up, though, it was a real problem for me. I knew about Renée Richards and Christine Jorgensen, but they didn’t seem relevant to my situation. They were men who transitioned to women. I was raised as a woman, but never felt like one. Then after jazz musician and bandleader Billy Tipton’s death in 1989, it was discovered that although assigned
the female gender at birth, he had lived his adult life as a man. This was a revelation to me. I realized I had another option. But I went through years of confusion and unhappiness because who I was told I was didn’t fit my own feelings about myself and there were so few resources to help me understand it all.” He continued: “Another issue many transgender men and women can face is family and social ostracism, depending of course on your family and friends. Then there’s discrimination on the job. My experience is a perfect example. Employers have almost complete discretion over what employees wear at work. I never felt comfortable in women’s clothes, and as I transitioned I started to wear more masculine outfits. That seemed to be no problem with my co-workers, but was a problem with management at the financial institution where I was employed. I was harassed more and more, and eventually constructively discharged, even though I had an excellent work record. It was quite a while before I found another job, and it didn’t pay as well as what I’d been earning. I was lucky in that I had a college education, savings, and COBRA [a federal law allowing one to keep health coverage
temporarily after losing a job by paying the entire premium oneself ], so I was able to keep my medical insurance for a time after I was fired. But when COBRA ran out, I found myself among the uninsured.” Which brings us to medical issues transgender people face. First and foremost are the costs of transitioning. According to Broadus: “You need quite a bit of money or good insurance to pay for the operations you’ll need and the hormones you’ll be taking for the rest of your life if you choose to go the medical transitioning route.” But the problems don’t stop there. To quote directly from page 72 of the 2011 research document “Injustice at Every Turn: A Report of the National Transgender Discrimination Survey,” sponsored and published by the National Center for Transgender Equality and the National Gay and Lesbian Task Force: “Access to health care is a fundamental human right that is regularly denied to transgender and gender non-conforming people. “Transgender and gender non-conforming people frequently experience discrimination when accessing health care, from disrespect and harassment to violence and outright denial of service. Participants in A&U • MAY 2016
our study reported barriers to care whether seeking preventive medicine, routine and emergency care, or transgender-related services. These realities, combined with widespread provider ignorance about the health needs of transgender and gender non-conforming people, deter them from seeking and receiving quality health care. “Our data consistently show that racial bias presents a sizable additional risk of discrimination for transgender and gender non-conforming people of color in virtually every major area of the study, making their health care access and outcomes dramatically worse.” Some of the statistics given in the report can be startling: Nineteen percent of survey participants said they had been refused medical care because of their transgender or gender-nonconforming status, with even higher numbers among people of color; twenty-eight percent said they were subject to harassment in medical settings, with two percent being victims of violence in doctors’ offices; fifty percent said they had to teach their medical providers about transgender care; a staggering forty-one percent said they had attempted suicide (compared with national statistics of 1.6 percent of the general population), with those citing unemployment, bullying in school, low household income, and physical and sexual abuse reporting even higher rates; over twenty-five percent reported misusing drugs or alcohol specifically to cope with mistreatment they faced due to their gender identity or expression. The “Injustice at Every Turn” report also documents transgender issues related to HIV/AIDS. Overall, the survey participants reported an HIV infection rate of 2.64 percent. This may seem low until you learn that it is four times the infection rate of 0.6 percent in the general U.S. adult population. And transgender people of color reported rates much higher: 24.90 percent for African Americans, 10.92 percent for Latino/as, 7.04 percent for Native Americans, 3.70 percent for Asian Americans, all substantially above the rates for those groups in the general population. In regard to HIV/AIDS, Broadus stated: “It can be a real problem for transgender people of color. The ‘Injustice at Every Turn’ report shows that thirty-four percent of the African-American transgender population makes less than $10,000 per year, not surprising in a period when the unemployment rate for black Americans overall is almost twice the rate for white Americans. But trans people of color are especially vulnerable to employment problems. For one thing, they tend to MAY 2016 • A&U
transition earlier than their non-peopleof-color counterparts, which can result in their education being interrupted as they struggle emotionally to cope with all the changes this causes in their lives. Even when educated, they can run into a great deal of employment discrimination, either unable to find work in the first place or like me finding themselves let go because of their gender non-conforming status. Remember, there’s very little legal protection to help them in this area. To support themselves they’re often forced into the underground economy, which in turn often means sex work. And that can mean exposure to sexually transmitted diseases, which above all includes HIV.”
It’s clear that the problems faced by the transgender population, including HIV/AIDS, have complex roots. The solutions, however, are equally clear: In the words of Broadus quoted earlier in this article, “We need more education about our needs, and more specific laws on the books.” The transgender community is lucky to have someone of the caliber of Kylar Broadus working on its behalf to achieve those goals. For more on Kylar Broadus and his work, go to his website: www.kylarbroadus.com; for more on TPOCC, go to its website www.transpoc.org. Lester Strong is Special Projects Editor of A&U.
ACCIDENTAL ACTIVIST An Out-of-the-Ordinary HIV Criminalization Case Spawns An Extraodinary Activist by Chip Alfred
ulie Graham is not a typical defendant in an HIV criminal prosecution. The perky, parochial school graduate and licensed practical nurse from Central Pennsylvania never imagined she would be at the center of a traumatic legal battle that played out in the local news. “I’ve had hit after hit after hit over the last two years,” she said. The nightmare began in 2013 for Graham, then twenty-five, when state police issued a warrant for her arrest. She was charged with four crimes, including two felonies, based on allegations by a man she had dated who claimed she didn’t disclose her HIV status. The man who made the complaint against her did not contract HIV. To avoid being hauled out in handcuffs, Graham surrendered to authorities and posted $25,000 in bail. The charges included sexual assault and aggravated assault, each carrying maximum sentences of ten years behind bars. The other charges were simple assault and reckless endangerment, both misdemeanors. Defense attorney Lawrence Krasner, who represented Graham, succeeded in getting three of the four charges against Graham dismissed. AIDS Law Project of Pennsylvania (ALPP) Executive Director Ronda Goldfein and Staff Attorney Adrian Lowe convinced the Lebanon Valley District Attorney not to prosecute on the remaining charge of reckless endangerment if Graham completed the requirements
of a special rehabilitation program in Pennsylvania for first-time offenders. So Julie Graham isn’t going to jail and she won’t have a criminal record, but her life has been torn apart by the repercussions from the case. “There is often tremendous collateral damage from these types of cases,” says Goldfein. “Here is a person who got a stellar criminal defense lawyer, got some feisty advocates for support, but it’s not all behind her.” Graham’s private medical information and her accuser’s claims were revealed on the front page of her local newspaper, The Patriot-News. After the story appeared online at www.pennlive.com, more details about Graham were posted by readers, including where she worked, where she went to high school, along with some hateful comments about her. “I received a lot of harassment,” she recalls. “People said a lot of bad things about me. But having it exposed to everybody at work, that’s what was threatening to ruin my career.” Graham was suspended for a year without pay from her job at Lebanon VA Medical Center soon after the allegations came to light. Goldfein says that at every turn Graham’s employer was not supporting her. Instead, they were punishing her—trying to terminate her and challenging her applications for unemployment benefits. (With the help of ALPP, Graham is now back on the job, but still fighting for her full benefits.) “It is absolutely wrong the way the A&U • MAY 2016
photo courtesy J. Graham
VA treated me,” says Graham. “When these HIV criminalization cases occur, I want people to know you can fight it,” she declares. “People need to be educated about the disease. Once you’re educated, there’s so much power in that.” After going through all of this, Graham is using her experience “to become an advocate and share my story to help others. It’s part of my healing process, and it’s helping me deal with my status.” She’s become an outspoken activist who’s actively involved with organizations including SERO Project and Positive Women’s Network-USA (PWNUSA). Graham is also a scheduled speaker at the HIV Is Not A Crime II: National Training Academy (hivisnotacrime.com) on May 17–20, 2016, at the University of Alabama in Huntsville. “I’m so incredibly proud of Julie,” says Goldfein. “She was forced into an awful situation and has risen to the challenge. She goes to Washington with her parents to talk about this! That’s a whole new level of courage.” Graham is optimistic that building awareness around her experience can impact the broader conversation. “I’m hopeful for some change in all of this. I hope that by telling my story someday there will be an opportunity given to me to make it national.” According to Goldfein, Graham just might have that chance. ALPP has filed a federal complaint on her behalf with the Equal Employment Opportunity Commission (EEOC), alleging that her employer’s actions constitute discrimination against a person with HIV. As for the larger issue of HIV criminalization, laws and sentencing guidelines vary widely from state to state. A federal bill to reform outdated laws that stigmatize people living with HIV, the REPEAL HIV Discrimination Act (H.R.1586) sponsored by Congresswoman Barbara Lee (D-Calif.) [A&U, October MAY 2016 • A&U
2012], was first introduced in 2013 and reintroduced in 2015. According to The Center for HIV Law & Policy, thirty-two states and two U.S. territories currently have HIV-specific criminal laws. In many states, people living with HIV can still be (and are) arrested and prosecuted for consensual sex, biting, spitting, or scratching. Most of these laws were enacted during the AIDS panic of the 1990s. Despite all the advances in HIV treatment and prevention since then, only one of these states has changed its law. In 2014, Iowa became the first state to revise its HIV-specific statute. The re-
vised law, which also encompasses several other infectious diseases, creates a tiered sentencing system that takes into consideration whether there was intent to infect another person, whether there was any significant risk of transmission, and whether transmission occurred. In Pennsylvania, which does not have an HIV-specific statute, general criminal laws are cited to charge people living with HIV for conduct that wouldn’t be criminal, except for their HIV status. For Graham, who was diagnosed in 2011 and became undetectable soon afterward, the risk of her infecting a male partner through vaginal intercourse is, of course, extremely low.
Goldfein points out the issue in states like Pennsylvania is not about legislation, but about the way HIV-related cases are applied to existing laws. She’s encouraged by the meeting with Lebanon County prosecutors, which involved a candid conversation about consensual sexual behavior, risk reduction, and the counter-productive impact that HIV criminalization cases can have. “Criminalization laws only put another barrier to prevention,” Goldfein remarks. “In every scenario, you’re causing fear in the hearts of people with HIV because of their virus.” She contends that these cases discourage rather than encourage people to learn their status. If a person doesn’t know their status, they can’t legally be charged with not disclosing it to their partners. They are also less likely to change risky behaviors. “This is a huge roadblock to preventing HIV transmission and to getting people in treatment.” ALPP recently joined forces with SERO Project, PWN-USA-Philadelphia and a statewide coalition of advocates to lobby the Pennsylvania District Attorneys Association, arguing that criminal laws should be grounded in science, not on outdated assumptions, stigma, and fear. To overcome the stigma and fear she encountered, Julie Graham finds her strength in a higher power. “The mistakes you make, you learn from them. There are hurdles and bumps along the way. It’s all part of the journey. In my case, it’s a chance to turn back to God and fulfill his will.” A&U welcomes your HIV Criminalization story ideas or suggestions. Please contact Chip Alfred, email@example.com. For more information: SERO Project: www.seroproject.com; Positive Women’s Network-USA: www.pwnusa.wordpress.com; AIDS Law Project of Pennsylvania: www.aidslawpa.org; The Center for HIV Law & Policy: www.hivlawandpolicy.org; Lambda Legal: www.lambdalegal.org/issues/hiv. Chip Alfred is A&U’s Editor at Large based in Philadelphia.
Last Men Standin A Film by Erin Brethauer and Tim Hussin Brings the Voices of Long-Term Survivors to the Screen by Hank Trout
eet Harry Breaux as he dons fishnet stockings and a corset, preparing to march in the 2015 San Francisco LGBT Pride Parade on the twenty-fifth anniversary of his first trek down Market Street. Listen to Kevin Vandenbergh and Ganymede contemplating how they will survive in San Francisco once their private disability insurance runs out on their sixty-fifth birthdays. Walk along the dunes at Ocean Beach with singer-songwriter-artist Jesus Guillen as he fights ever-present neuropathy; applaud Mick Robinson as he discusses overcoming years of substance abuse; celebrate the wedding between David Spiher and Ralph Thurlow, whose HIV-associated neurocognitive disorder is slowly taking him away from David. Finally, wave farewell to travel business owner Peter Greene as he packs up his truck to move to Palm Springs from his beloved San Francisco, evicted from his home of thirty years. It will be his last move. These are the courageous, eloquent long-term survivors of HIV/AIDS profiled in Last Men Standing, the powerful new sixty-six-minute documentary by filmmakers Erin Brethauer and Tim Hussin at the San Francisco Chronicle. The film premiered on Friday, April 8, 2016, to a sold-out crowd at the legendary Castro Theatre in San Francisco. Last Men Standing chronicles the everyday difficulties faced by these survivors; as the Chronicle put it, “Surrounded by the ghosts of a generation lost to the AIDS epidemic, eight gay men search for meaning in a life they never expected to have.” All eight of these men were diagnosed in the pre-cocktail days when a positive HIV test was thought to be a death sentence—period. No one ever imagined the difficulties and issues of aging with HIV, because no one imagined “aging with HIV.” Constant neurological pain, substance abuse, economic hardship, housing instability, costly bogus medical treatments,
stigma, toxic side effects of medicines, and the never-ending grief and PTSD over the loss of friends and lovers during the height of the epidemic have all taken their toll. You can read that toll in every line of their beautiful faces. Chronicle reporter Erin Allday, who wrote the article, interviewed more than fifty men who have lived with HIV/AIDS for half of their lives, as well as doctors, activists, San Francisco city officials, and LGBTQ allies. Even after she narrowed her focus to just eight men, the story grew into a twenty-page supplement to the Sunday, March 26, 2016 edition of the paper. Filmmaker Erin Brethauer told me that when work on LMS began, the plan was to film two to three-minute vignettes with each of the men in the film for use on the Chronicle’s website as an adjunct to Ms. Allday’s article. But as filming intensified over four or five months, Brethauer and Hussin realized they had ample material for a full-fledged documentary. “We whittled it down to just sixty-six minutes, which wasn’t easy,” Ms. Brethauer told me. Near the beginning of the film, we hear Kevin Vandenbergh say, “Someone said to me when I started taking the meds, ‘Now you’ve got your life back.’ But I’m not sure I want it back.” Diagnosed as HIV-positive in 1987, aged twenty-seven, and with full-blown AIDS in A&U • MAY 2016
photo by Russell Yip
MAY 2016 â€˘ A&U
1994, Kevin has since avoided the most common opportunistic diseases associated with HIV but has battled long-term depression and self-imposed isolation. That image of Kevin—lonely, depressed, painfully shy—is difficult to reconcile with the animated, smiling, outgoing man sitting with me at lunch as we talk about his role in Last Men Standing. He first heard about the LMS project through Vince Crisostomo, the program director at the San Francisco AIDS Foundation’s support group, the Elizabeth Taylor 50-Plus Network. Vince convinced Kevin to testify before the San Francisco Long Term Care Coordinating Council about his
primary concern now as a long-term survivor—surviving in San Francisco once his private long-term disability insurance runs out when he becomes sixty-five. Kevin met Ms. Allday at that hearing and agreed to talk with her for the article. He also agreed to go with Erin to see the documentary Desert Migration [A&U, September 2015], about long-term survivors who have fled San Francisco for Palm Springs, on the Thursday night before the Pride Parade in June 2015. Kevin discovered that he knew one of the men profiled in that documentary. That night, Erin also convinced Kevin to go to a free dance party celebrating long-term survivors, called
A&U • MAY 2016
photo by Tim Hussin
REVIVAL, sponsored by the group Honoring Our Experience [A&U, April 2016], where Kevin indulged the lifelong passion that not even the virus can take away from him—dancing! That was the beginning of Kevin’s re-entry into his community. At the urging of friends at the dance, Kevin agreed to march in the Pride Parade with the Shanti Organization. With just a tad more urging, Kevin proudly marched down Market Street holding Shanti’s large LOVE HEALS banner aloft. Harry Breaux marched at the front of that contingent in the Pride Parade. Decked out in fishnet stockings, rainbow leggings, well-worn combat boots, red-sequined opera gloves, a black leather corset, and a long curly black wig, Harry strutted down Market Street with a power that belied his seventy years, sashaying from side to side of the street, working an adoring crowd. This wasn’t Harry’s first Parade with Shanti; he had worn the same Dr. Frank N. Furter costume (saved from a Tulane University production of Rocky Horror Show in the 1980s) when he led them in the 1990 Parade. “I know the only thing people are going to remember about me are those damn fishnets!” Harry laughed as we got to talking. I assured him he needn’t worry about that. Diagnosed in 1980, Harry is one of our longest-surviving warriors. In 1996 he spent three weeks in hospital in Santa Clara, California, expecting to die of AIDS, rallying every time he and the doctors thought he was gone. “As far as I’m concerned,” he told me, “I died in 1996. Everything since then has been lagniappe.” Harry has spent much of his life, he told me, working against the grain—specifically, against the heteronormative, capitalistic majority. After attending military academy in Tennessee, and eschewing the engineering career his family thought him destined for, he turned to theater. He was among those gay “settlers” in San Francisco who broke off from the sixties and seventies hippies and claimed the Castro District as their own, lithe, long-haired men who tore down the paper covering the street-front windows at Toad Hall, proclaiming “This neighborhood is OURS! We’re here to stay!” He is no stranger to the fights our tribe has waged. I asked both men what motivated them to participate in the Last Men Standing project. For Harry, it was a chance to show the world that despite the physical problems and the financial worries faced by long-term survivors, “We are not just
surviving but thriving, still doing everything we can to live full lives of generosity to others.” When I asked him if he had any hesitation about being followed around by a camera crew filming some rather intimate moments, a bright “are-you-kiddingme?” smile spread over his still-youthful face—“Just put the camera on me!” It was slightly different for Kevin. “I wasn’t sure I even belonged in this film,” he said. “When I listened to friends talking about all the diseases and infections they’ve gone through—and I’ve been lucky, I haven’t gone through any of that—I just wasn’t sure why I was even in the film. I haven’t suffered enough.” The filmmakers convinced him—quite rightly—that his is perhaps the most relatable, the most universal of the stories told in the film. Opening night jitters before the premiere? Nope! I asked both, “What were you thinking about as you got ready for the premiere.” Kevin: “What am I going to wear? How do I look?” Harry: “To Frank N. Furter or not to Frank N. Furter!” Both have experienced overwhelming love and support from people, both friends and strangers, who have read the article or seen the film. During the Q&A after the premiere, Kevin spoke about a twenty-two-year-old man who read the article, found Kevin online, and wrote him asking, “What can I do to help change the world.” Harry teared up once when we talked: I asked him what it felt like the night of the premiere to watch the film with hundreds of other San Franciscans. “I was so humbled to be on the same stage with those other men and Tom Ammiano [an icon in SF gay politics second
only to Harvey Milk]. I remembered all the beautiful men whom I’ve sat with in the Castro Theatre. It hurt that they’re not still here to see this and I am. “I hope,” Harry went on, “that the film will open a path to an entirely new paradigm of societal support for each other, playing and loving together. I hope it shows that people can be cared for without being a burden.” “I want to go to the Oscars when it’s nominated!” Kevin said. “We want the film to be experienced all over the country,” Erin Brethauer told me. To that end, the film is being shopped to film festivals worldwide. It has already been slated for Frameline 40, the San Francisco International LGBTQ Film Festival (www.frameline.org); the Portland Queer Documentary Film Festival
(www.queerdocfest.org/); and Inside Out Toronto (www.insideout.ca/). There are also plans, post-festival season, for online streaming and DVD distribution. “We hope this film can reach especially those survivors living in isolation who don’t yet know about this loving community. We want them to know that they are not alone. We hope it sparks a conversation and brings some measure of healing to the community.” And so, they soldier on, these incredibly brave wounded warriors profiled in Last Men Standing. All but one, that is. Peter Greene, who owned Now, Voyager, the first gay travel agency in the country, did not live long enough to attend the film’s premiere. At the Q&A after the premiere, the empty chair placed alongside the other men sitting on the stage of the Castro Theatre spoke eloquently for Peter and the 21,000plus San Franciscans who didn’t live to see Last Men Standing.
photo by Tim Hussin
A trailer for the documentary, as well as photos and the entire text of the Chronicle article, “Last Men Standing: The Forgotten Survivors of AIDS,” can be found online at: http:// projects.sfchronicle.com/2016/living-withaids/documentary/ .
David Spiher and Ralph Thurlow MAY 2016 • A&U
Hank Trout edited Drummer, Malebox, and Folsom magazines in the early 1980s. His published writing has ranged from gay “smut” (his term!) to literary criticism of William Blake. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-six-year resident of San Francisco, where he lives with his fiancé Rick. He read two of his pieces at the National Queer Arts Festival in San Francisco in June of last year.
ON TIME ASHANTI CLOCKS IN HOURS BY INFLUENCING AND INSPIRING OTHERS TO BE WISE WHEN IT COMES TO SEX
by Dann Dulin
he elevator doors open. There’s Ashanti and her mother, Tina. They just stepped off an opposing elevator. I introduce myself and we proceed together down the hall to her publicist’s office. It’s noon and we’re both on time, here on the sixth floor of the Pacific Design Center, an architectural gem known as the Blue Whale, in the heart of West Hollywood, California. “I don’t even have my heels on yet,” exclaims Ashanti, thinking she might be able to prep before we meet. Once in the office, Maureen, her topnotch PR, ushers us to a private room. After offering us bottled water, Maureen and Tina, Ashanti’s manager, who calls herself “MOMager,” and could easily be mistaken for Ashanti’s sister, exit. As Ashanti slips on her basic semi-spikey black shiny heels and fusses with her hair, which is tightly swept back into a long, flowing ponytail, we briefly chat about several of her projects reminiscing about the music video “Foolish.” “Terrence Howard was hilarious!” she shares, chuckling. “After we finished that scene in bed where I’m straddling him, he gets outta bed, pulls his pants up, and says (to the crew), ‘Yep. Ashanti’s pregnant, guys. I just want you all to know.’ I was dying with laughter all the time during the shoot. He even played his guitar on the set.” Ashanti is releasing two films this year, Stuck, a drama set in the New York subway, and Mothers and Daughters, a drama for which she not only served as executive producer but composed the musical score as well. She appears alongside Susan Sarandon, Sharon Stone, and Courtney Cox. Ashanti’s known for dodging personal questions, but this afternoon she’s candid and forthcoming, opening up about the impact the epidemic has had on her. The singer first heard about AIDS at the age of fourteen, when a family member was stricken with it. To respect those still living, Ashanti is private about revealing the identity. “It…was… really…tragic,” her voice lowers while her sparkling ebony eyes roll upward and her head nods gently back and forth. “It came
out of nowhere.” The person who contracted the virus didn’t tell anyone and infected someone else.” While studying dance as a teen at the Bernice Johnson Cultural Arts Center in Jamaica, New York, several of Ashanti’s teachers died from AIDS-related causes. “I was really affected by their deaths,” she tells me, sitting next to her on a light tan leather couch, dressed in fire engine red stylish slacks, sleeveless form-fitting charcoal grey and white herringbone pattern midriff, and accessorized with skinny gigantic hoop earrings. “It’s always hard to see someone you know and care about die, especially from a disease that is shunned upon because of lack of awareness.” Her phone rings, with descending glissando tones. She switches it off. Ashanti’s screensaver is a picture of herself and her grandmother smelling an arrangement of orchids, her grandmother’s favorite flower. Raised in a loving home in Glen Cove, New York, Ashanti Shequoiya Douglas and her sister, Kenashia, have musical parents. Her mother, who’s like a best friend, is a former dance instructor and her father, Kenkaide, was a singer. They’ve been married for nearly forty years. Ashanti was named after the Ashanti Empire in Ghana, a nation where women were powerful. Ashanti started dance classes at the age of two (“They had to be potty trained in order to dance—and she was!” Tina later related). Around twelve years of age, Ashanti was doing chores around the house when the music she was listening to became too loud. Her mom told her to turn it down. Tina didn’t realize that Ashanti had headphones on and the strong and soulful voice that she heard was Ashanti singing along with the music. The girl had talent! Tina morphed into a stage mom and entered her daughter into talent shows, where Ashanti took first place. The future pop star’s career was launched and Tina became her manager. At fourteen, Ashanti landed her first record contract. Dividing her time between recording sessions and high school, she was A&U • MAY 2016
credits: Barbara Bui/halter jumper; Oscar Tiye/sandals; Helen Ficalora/disc necklace; H&M/earrings and rings
photographed exclusively for A&U by Annie Tritt
credits: Zara/bomber jacket; Fashion Nova/bodysuit; Rag and Bone/jeans; H&M/Jewelry
an honor student and a track star. After graduation in 1998, Virginia’s Hampton University offered her a track scholarship. It was a thorny decision but Ashanti chose a music career instead of academia. In 2002 she released her debut album, Ashanti, having written all twelve tracks. Three of those album’s songs “Foolish,” “Always On Time,” and “What’s Luv” made the Top 10 all in one week. This was a record breaker. Ashanti became the first female artist to have three singles simultaneously and it sold more than 500,000 copies its first week. This landed her in the Guinness Book of World Records for the greatest-selling debut album from a female artist. Ashanti was critically acclaimed and it received a Grammy for Best Contemporary R&B Album. Around this time, she wrote JLo’s number-one hit, “Ain’t It Funny.” Ashanti’s latest album, Braveheart, was released in 2014. Right now, she’s back in the studio recording a new album for release later this year, on her own label, Written Entertainment. After the esteem of her eponymous album, her career snowballed. Ashanti branched out into film (Bride and Prejudice, Coach Carter, John Tucker Must Die, and Resident Evil: Extinction), TV (Sabrina, the Teenage Witch, Buffy the Vampire Slayer, Las Vegas, Law & Order: SVU and Army Wives), and stage (playing Dorothy in The Wiz for New York City Center’s Encores! Off-Center). Her career has propelled her around the globe, even to Africa. During her last visit, the Ebola epidemic was raging. She’s hesitant to talk about it. Ten years ago a drunk driver killed her cousin who also was her assistant. “It’s funny, I never talk about this,” she notes mournfully. “It took a long time before I could even think about her being murdered.” She takes time to recompose. Ashanti comments on how strange it is when you’re an artist that those in charge take you to the rich part of town, so she didn’t see much of the AIDS outbreak. But driving to her destination, she passed impoverished areas. “It was tough taking all this devastation in,” she recounts earnestly, briefly glancing at the floor. “It felt like there’s no middle class. You’re either really, really rich or you’re struggling. It was also difficult to determine if someone was affected by
HIV versus someone affected by the Ebola virus versus someone affected by pure poverty and neglect.” She playfully twists on her ponytail then continues. “It was just very hard to see the country in such conditions. Some workers were saying more women had AIDS than anyone else in the country. It was very distressing.” Ashanti attributes her success to her parents, and her backbone buoyancy to her grandfather, Tina’s dad. While growing up, her grandfather, James Davis,
want her to do it. “It was hard but I got through it.” She takes a deep breath. “My grandfather was one of my best friends. He was my buddy.” Ashanti’s demanding schedule requires fortitude. “You have to have a certain discipline,” she points out. “You have to know and understand the bigger picture. People have worked hard to get you this gig; people are depending on you. So just because you’re going through something, you have to suck it up and be professional. “Trust me! There’s many times— Oh. My. Gosh.—where your head is not there, your heart is somewhere else, you’re dealing with drama, but you have to perform or you have to appear on The Today Show, so you smile and you turn it on.” She goes on. “If you’re going to perform for a crowd, all’s they know is that they paid their money a month ago and are coming to watch a great show. They don’t care if one of your dancers got the flu and couldn’t make the flight or you fractured your toe on the way or that your luggage was stolen. No one wants to hear a story.” Ashanti takes a sip of water. “Recently I was in Australia and I didn’t have all the equipment I needed right before the show. Something didn’t work. But that doesn’t matter. What matters are those fans, some who traveled from New Zealand, some who drove two hours. “Some people are cut for it and some are not,” she remarks. “I have what’s called a really mean or a really good poker face. I could be dealing with death but nobody’ll know. For me, that’s a tool—and it’s a blessing.” Her face softens into a smile. Ashanti has the elegance of Iman and the strength of Cleopatra. Her fame is another blessing. “I’ve been fortunate to live my dream and I’ve been given a platform to reach millions of people,” she says about her humanitarianism. “To me it only makes sense to give back. When there’s an occasion to help someone and change their life, it may not seem important to you, but it could be something gigantic for them. It’s part of the formula of life,” she resolves. Ashanti has many passions and sets the bar high for others. She’s long been an advocate for HIV awareness and helps to decrease the ignorance, by working with several organizations that include
“I have what’s called a really mean or a really good poker face. I could be dealing with death but nobody’ll know. For me, that’s a tool—and it’s a blessing.”
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a civil rights activist, cared for Ashanti while her parents worked. As president of the Glen Cove NAACP, he integrated the firehouse and the police station, he created public housing, and he started a daycare center where Ashanti once worked. The man marched in Selma and was friends with Martin Luther King, Jr., and Malcolm X. “My grandfather is like Big Time,” she grins proudly, raising her fist in the air. “He was really cool and had a huge influence on my entire family. They named a street after him in Glen Cove, near the church that I still attend.” He died right before Ashanti’s first solo appearance in 2000, the Teen Choice Awards, where she and Ja Rule performed “Always On Time.” (Fortunately, he got to listen to one of her songs on the radio from his hospital bed beforehand.) “I wasn’t going to do the performance that night. I said, ‘I’m not doing it!’” Her family assured her that her grandfather would
Broadway Cares. The songwriter has also admits to always using condoms, Ashanti committed to such causes as domestic empathizes that it can be challenging to violence, the LGBT community, empowerask the person you’re dating about STI’s. ing women, cancer, sickle cell, and heart “Sometimes it’s hard when you’re starting health. Ashanti has helped raise funds out with someone. You wonder how to apfor building homes for those in need and proach the subject,” she grumbles. “Let me she aided in the Tsunami and for Katrina make it clear, though, just because a person victims. Charities she’s connected with indoesn’t look like they have a disease, they clude Make a Wish Foundation, Partnership may. But you have to bring it up!” Ashanti for a Healthier America, Boys and Girls crosses her legs. Her high-heeled foot bobs Club of America, ACT, and Jumpstart. up and down. “No matter what function I attend or “When I’m in a position like that I’m perform, all through my career, AIDS the best about being sarcastic to make my ways heavily on my mind and I take that point. I’m a strong woman.” Out of the opportunity to raise awareness whenever blue, she feigns a new voice and imagines I can,” she offers firmly with a scenario of fervent pathos. a “No matter what func- confronting Late last year, Ashanti guy. “‘…This isn’t teamed up with First Lady tion I attend or perform, gonna fly! We’re Michelle Obama’s Partnergoing to do what all through my career, ship for a Healthier America (PHA) initiative, where AIDS weighs heavily on Ashanti’s single, “Let’s my mind...” Go,” encourages people to drink more water daily for the Drink Up campaign: #DrinkUpAshanti. Ashanti has recorded several public service announcements, one for domestic violence that appeared on thousands of film screens. Another one for the Southeast Asia tsunami, in which she also helped raise funds for the disaster. Several years ago she I wanna do. If not, you can go about your did a Wrap It Up: HIV Prevention spot for business.’ Don’t let a person dictate what’s the BET channel. In 2008, when Lawrence going to happen in your life,” she roils with King, an eighth grader in Oxnard, Califoremotion. Ashanti thinks. “You could renia, was murdered for being gay, Ashanti mark in an off the cuff humorous way, ‘Say, taped a PSA for the LGBT community adwhen was your last blood test?!’” Ashanti dressing discrimination. In 2011, she shot momentarily stares off into space then puts a PSA on education, with Denzel Washingthe back of her hands gently over her eyes. ton, directed by Ron Howard. “However, I realize there are women Ashanti is eager to do another PSA who have no self esteem. I watch those Lifefor the HIV community. “It’s got to be time movies-of-the-week…,” quips Ashanti, visual—drastic and dramatic,” she persists brusquely with a wave of her hand. “Some with gusto, donning the director hat, her girls will do whatever it takes to be accepted. hands all a flutter. “Something happening It makes me sad.” to a newborn baby and it wasn’t her fault. She pauses, then in a crescendo of Then you see the mom crying.” Ashanti emotion she pounds her fist into her palm sits back, brainstorming ways to get people and declares, “Speaking your mind is where to learn more about prevention. “Social it’s at! My heroes are those people who get media is a gift and a curse,” she laments. the message out about HIV despite risking “It’s awesome when it’s used in a positive public ridicule,” Ashanti says, recognizway. But nowadays, people’s attention span ing Elton John and Magic Johnson as two is very short…,” exclaims the recipient of examples. “I remember a model was asked the Aretha Franklin Entertainer of the Year to do a billboard for AIDS, but he was award in an exhaustive dismissive tone. skeptical that people would think he was Ashanti dated Nelly for nearly a decade, HIV-positive. He ended up doing it, they cut but it ended in 2012. Currently, she’s “been him a great check. It was posted on Sunset dating someone for a good amount of Boulevard in L.A., a huge billboard. People time.” That’s all she’ll reveal. Though she
did think he had AIDS, but he cleared it up saying, ‘That’s the point.’ Even though more people were interested in whether he had AIDS, they got the message.” Ashanti leans in, resting her forearms over her knees and looks directly at me. “If there’s one thing I want to get across in this interview today, this is it,” the artist asserts with force. She clears her throat, straightens up, and presents as though she might be speaking at the podium of a high school auditorium. “People need to understand that the disease does not discriminate. Anyone can get it. That needs to be drilled. If you think you’re not part of a certain group that won’t get HIV, you’re fooling yourself. And if you have it, and don’t get tested,”— she breaks for effect—you’re…spreading… it! That’s ignorance!” Ashanti’s face is awash in disgust. After a moment of silence, Ashanti bestows her gratitude for the interview, gives a hug, and bids farewell. Her last harrowing words echo as I depart down the corridor back to the elevator. Passing a large window that boasts a captivating view of the Hollywood Hills, I espy the iconic nightclubs, House of Blues and Troubadour, a launching pad for many famous artists. There’s also the Roxy, where Ashanti has performed. Exemplifying integrity and responsibility, with her charismatic spirit and timely compassion, Ashanti will continue to appear all around the world for a wide range of causes.
“...and I take that opportunity to raise awareness whenever I can....”
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Grateful to Jennifer Eagle for her keen eye and intuitive nature. Kudos to Angela Fairhurst of Fairhurst Productions for making all this happen! Hair by Marcello Costa using Redken for kenbarboza.com. Styling by Oscar Montes de Oca for kenbarboza.com; Assistant Stylist: Andy Diaz; Makeup by D’angelo Thompson (www.dangelothompson.com). For more about the work of photographer Annie Tritt, log on to: www.annietritt.com. Dann Dulin is Senior Editor of A&U. He interviewed actors Teddy and Milissa Sears for the April cover story.
Know Your Your Rights Know Rights Scott Schoettes, Lambda Legal’s HIV Project Director, helps us navigate today’s HIV legal issues by Alina Oswald
hat I love the most about the law?” says Tom Hanks playing Andrew Beckett in Philadelphia. “It’s that every now and again—not often, but occasionally—you get to be a part of justice being done. That really is quite a thrill when that happens.” In real life, nonprofits like Lambda Legal help make that happen every single day. And that is vital for individuals living with HIV and AIDS. Once, before treatments revolutionized our options, we described an HIV-positive diagnosis as the equivalent of receiving a “death sentence.” The analogy to the justice system was apt and perhaps prescient. Today, individuals with HIV/AIDS are often living longer, but the current AIDSphobic climate of our society still casts living with HIV as a criminal act. Individuals living with HIV/ AIDS are frequently facing not “death sentences” but possibly prison sentences for possessing a “deadly weapon,” or at least unjust treatment in the form of healthcare and employment discrimination. Founded by Bill Thom in 1973, Lambda Legal is the first legal organization in the U.S. to fight for full equality for the LGBT community. Starting out with a group of lawyers volunteering their services, over the years the nonprofit has grown to include, today, a staff of more than eighty experts working in five offices—New York, Chicago, Atlanta, Dallas, and Los Angeles—that cover the country. Each state falls in one of these five regions. Lambda Legal provides help to individuals through its network of attorneys that are willing to work, sometimes on a pro-bono or reduced-fee basis, for people in the community that it serves. The nonprofit tries “to bring the cases that are forging new paths by creating new laws that protect the community we serve,” Scott A. Schoettes, HIV Project Director at Lambda Legal, explains. “We’re looking for cases that will not only serve the individual, but also the broader community.”
Schoettes started working at Lambda Legal in 2007, when he applied to be a generalist, doing general LGBT work. It so happened that at the time there was a position available as an HIV-specific staff attorney. Living with HIV himself, and open about his status, Schoettes accepted the position, since it fit him perfectly. “My HIV status provides a kinship with people that I serve,” he says over the phone. “It was just ideal for me to step up into that role.” About two years later, he stepped into the position of HIV Project Director. Schoettes has successfully litigated many cases. He was also the “point person for Lambda Legal’s work on the repeal of the HIV travel ban,” and, among many others, he has presented various HIV discrimination topics at forums at the White House, the 2013 Lavender Law Conference of the National LGBT Bar Association, and also across the country. He explains that when it comes to HIV and AIDS, much of the Lambda Legal work has to do with prevention. “Because,” Schoettes says, “when we’re enhancing the rights of LGBT people, when we are improving [their] self-esteem and access to justice, we’re actually empowering [them] to make better choices, and hopefully avoid becoming HIV-positive. So, I think that part of the work that we do is HIV-related, even though it’s not directly HIV-related.” He points out that there are a couple of legal issues that those living with the virus should be aware of. One is access to care. The other deals with discrimination. Access to healthcare (or lack thereof) comes in different forms, in terms of how people are denied care. One is that they cannot afford healthcare. The ongoing problem of HIV medications being priced based on the tiers of the insurance plans makes it more difficult for people to obtain their HIV-related care. “These are all things that we see as potential discrimination,” Schoettes explains, “and one of the ways to address these problems is through legal suit.” Directly connected to access to
healthcare is preventive care. “I think an emerging issue is access to PrEP,” Schoettes says. “We know now that [PrEP] is a very effective prevention methodology, when it is used correctly. And what we’re concerned about is that there would be an uneven distribution of access to it for people who have lower income. We want to work to ensure that that doesn’t happen.” The reality is that PrEP is expensive. Very few people can afford to pay for it out of pocket. Therefore, it requires access to health insurance. Under the Affordable Care Act (almost) everybody is supposed to have health insurance. What Lambda Legal does is try to make sure that that insurance is available and affordable, and that it covers the co-pays for people who want to use PrEP, so that they can afford to be on this medication. But that’s not always easy, especially in the South. Sometimes barriers put in place in particular by Southern states could lead, ultimately, to taking the medications out of many people’s reach altogether, and have a direct and profound impact on many people’s everyday lives. “The failure to expand Medicaid has an effect on people living with HIV that we serve,” Schoettes says, speaking about the region. “And there are lots of people who are not eligible for Medicaid in those states, [nor] for subsidies under the ACA. And that’s a real problem. That’s something that now can be addressed under the ACA,” he says. “The [healthcare law] has now discrimination provisions.” When it comes to HIV and access to care, another issue is discrimination from providers. “The LGBT community faces discrimination from providers, and so that’s an issue that we work on,” Schoettes says. “And it’s true for people living with HIV as well. There’s still fear surrounding HIV transmission. In addition, when it comes to prevention, some providers do not prescribe PrEP not based on medical reasons, but based on their moral code and beliefs.” A second issue surrounding HIV is A&U• •APRIL MAY 2016 A&U
photo courtesy Lambda Legal
employment discrimination. Many employers still have misunderstandings and misconceptions about HIV—how it is (or it’s not) transmitted. “It’s so frustrating,” Schoettes says. “It shows the depth of the fear and stigma that surround HIV.” That brings us to disclosure outside of personal relationships. “I think that in these sorts of situations, people need to think about to whom they disclose this information,” Schoettes says. “I’d love to be in a world where I could tell everyone that they should come out about their HIV status and live openly with HIV as I get to do, but I’m in a privileged place that I get to do that. And at this point [disclosing] is not something that we’re telling people to do.” When it comes to disclosing one’s HIV status, he advises to “Be selective! There’re very few reasons for the employer to know this information. Become informed about what your rights are, and also about how HIV is or is not transmitted.” Maybe the biggest problem is one that has made headlines, and that is HIV criminalization, a set of harsh laws that allow individuals to be charged with a criminal act for even merely perceived exposure to HIV, for example, not disclosing a positive status in an intimate relationship even if transmission did not occur or being charged with assault for spitting on another person. I can’t help but wonder what would happen if (or hopefully when) these laws were to be reverted. And how about all those imprisoned because of this law? “First of all, we have to change the law in all states,” Schoettes says. “After the law is changed, unfortunately people would still remain imprisoned until someone, a governor, [signed] an executive action to pardon or release them. I think that’s the MAY 2016 APRIL 2016• •A&U A&U
relief that people would have to go for after the law is changed. This is different from the case we’ve worked on in Iowa, [where] we took it to [Iowa] high court and we got the high court to reverse the conviction.” Nick Rhoades, who is living with HIV, was charged with intentially exposing Adam Plendl, a one-time sexual partner, to HIV. A condom had been used. Plendl did not contract HIV from the encounter. Yet Rhoades was charged, brought to trial (being counseled, unwisely, to plead guilty), convicted, and sentenced to twen-
ty-five years in prison (later suspended and replaced with supervised probation for five years) and registered as a sex offender for the rest of his life. Lambda Legal successfully appealed and a court set aside the conviction based on the fact that a viral load suppressed by effective treatment presents little risk for transmitting the virus. “[Hence] Nick Rhoades is no longer a felon and no longer has that on his
record.” While some argue that present laws should be repealed, Schoettes would like to keep them in place, only until new and better laws are created. After all, it might take years to revert the HIV criminalization laws. “My concern is that if right now we just repeal [the laws] we’ll end up in a situation that we have in a state like New York, where there is no HIV specific criminal law, but people are still prosecuted under other types of provisions.” He emphasizes that what’s needed is to create a just environment, new laws that would make much harder these kinds of prosecutions. Schoettes points out that preventing transmission of HIV is everybody’s responsibility. He emphasizes the importance of using PrEP for example, and reminds that having a depressed viral load considerably reduces the possibility of transmission. “We’ve come a long way in terms of how people view HIV. In the same time, there are [still] a lot of misconceptions out there. People don’t have a lot of information about the latest science. Our laws are a little bit stuck right now in the old paradigm. And so, I think we need to update not just the laws, but [also] people’s understanding,” Schoettes says. “I do think that PrEP is already having an effect on how we talk about prevention in the gay community, because there is some recognition that prevention is a shared responsibility.” For more about Lambda Legal, visit www.lambdalegal.org. For in-depth information about legal issues related to HIV, AIDS and others, go to Know Your Rights, http://www.lambdalegal.org/ know-your-rights. continued on page 62
Supervised Injection Facilities Could Reduce HIV and HCV Transmission in U.S. by Larry Buhl
he U.S. could have its first safer space—harm reduction advocates say injecting drugs is never completely safe—for IV drug users to pursue their habit as soon as the end of 2016. Seattle, Boston and Ithaca, New York, are in various stages of development for bringing supervised injection facilities (SIF) to those cities. SIFs, also called drug consumption rooms (DCRs) or medically supervised injection Sites (MSIS), are formal storefront locations for users to self-inject their own drugs in a hygienic environment under the supervision of medical staff. There are approximately 100 SIFs in nine countries around the A prepping rig at InSite world, but right now there’s only one in North America, a place the interest in SIFs is part of the trend that called InSite in Vancouver. led Congress to change its needle exchange All but unthinkable in the U.S. a policy last year. few years ago, SIFs are a reaction to the “There is a crisis mentality to put all overdose crisis and the rise in heroin use the options on the table now,” Raymond in the U.S. They’re getting a boost from says. “Some proposals that were considharm reduction advocates who point to ered too radical or polarizing are getting a statistics showing SIFs decrease the risk of second hearing.” fatal overdoses and can prevent new HIV SIFs could pull more of these risky and hepatitis C infections as well as the injection situations out of public places reinfection of hep C. Daniel Raymond, policy director for the where people might be rushed and might not be able to take safety procedures, Harm Reduction Coalition, tells A&U that
Raymond says. “The thinking is, if you start to pull a proportion of those into a supervised setting where people do have access to sterilized equipment, where people have a nurse or maybe a counselor to educate them about safer injecting, you’ll reduce the proportion of unsafe injections where HIV or hepatitis could be transmitted.” Insight from InSite Canada’s InSite facility shows that the A&U • MAY 2016
photos courtesy InSite
harm reduction theory can work. InSite opened in 2003 in a poorer area of downtown Vancouver and accessed by up to 900 people per day, some access it more than once a day. Addicts find it by word of mouth. Users register and get an unused syringe and paraphernalia, then are directed to sit at a mirrored booth. Nurses will watch users inject at these booths and if they see a reaction, from hives to cardiac arrest, they will intervene with Naloxone. After injecting, users go into the “chill room” for further observation for up to an hour. There have been no deaths at the facility since it opened. Anna Marie D’Angelo, a InSite’s injection room spokesperson for Vancouver Coastal Health, which operates InSite, says ically reduce public drug consumption on that in addition to offering safety, the streets. InSite can be a soft-sell for recovery. “We will be helping them do as little “The second floor is called OnSite, and damage as possible to their bodies, wheththat’s a detox facility. If people will go to er they smoke drugs, snort drugs or inject InSite [to shoot up] and express interest drugs,” he said. in getting off drugs, a peer counselor or Seattle’s mayor, Ed Murray, said last nurse will send them upstairs immediateyear that he was open to the idea of setly. The success rate for completing detox ting up safe injection sites. But he hasn’t is around forty percent, which is actually given a prognosis on whether the city pretty high for that group.” council would get on board with the idea. Murphy said that he would operate A growing response in the U.S. the space even if Seattle didn’t grant him While harm reduction advocates have a permit, but that he believes the city pointed out the benefits of supervised wouldn’t crack down. injection facilities for years, the recent “Middle-class people are dying in the opioid epidemic is making some public streets and if we don’t do something we health officials and even lawmakers conare going to have a larger death toll and sider what was once politically untenable that is a city issue we can’t avoid.” everywhere in the U.S. In February, the mayor of Ithaca, New In early February, Dan Morhaim, a phyYork, Svante Myrick, said he will seek ausician who also serves in Maryland’s House thorization or exemption from the state to of Delegates, introduced a bill including a make his proposed SIF legal. Like Ithaca, version of heroin-assisted treatment. any city would need an exemption from In Boston, the city’s HealthCare for the federal government for a facility that the Homeless Program is trying to raise allows illegal drug use within its walls. $250,000 to open an SIF in early 2017. Myrick is also proposing other They plan to get around the legal issue measures to combat the IV drug epiby doing only post-injection supervision. demic. He’s pushing for comprehensive Because patients would not be allowed to heroin-assisted treatment, which would take illegal drugs in the room, skeptics include a twenty-four-hour crisis center, question how many IV drug users would an Office of Drug Policy to coordinate the be helped by the program. city’s harm reduction efforts and a youth In Seattle, the nonprofit People’s apprenticeship program to keep kids away Harm Reduction Alliance wants to have a from drug use. mobile safe consumption space, probaMyrick’s plan would give cops the bly in the form of a van, up and running ability to direct heroin users to counselsometime in 2016. ing, housing or other services instead of In an interview with Fox 13 News in sending them to jail. Seattle has a similar Seattle in March, Shilo Murphy, executive director of the People’s Harm Reduc- program, called Law Enforcement Assisted Diversion. tion Alliance, said the program would be good for Seattle because it would dramatIn my backyard? MAY 2016 • A&U
City leaders and health advocates in Ithaca, Boston, Seattle, and elsewhere will face another issue in setting up SIFs. They’ll have to get the larger community to accept the centers and assuage residents fearing that putting a center near where anyone lives could lead to unintended hazards. Raymond says advocates of SIFs have some advance work to do, including outreach to stakeholders in the community, business owners, law enforcement (and from the municipal government which must legalize drug use in these facilities) to get buy-in before these centers open— if they open. In local media, Shilo Murphy has been addressing the NIMBY (not in my backyard) concerns of Seattle residents. In his March interview on Fox 13 he said that people who access such facilities are unlikely to be coming from across town. “All the studies show that consumption rooms, people are willing to go between five and ten blocks. They’re not coming to your neighborhood. They’re already in your neighborhood. They’re going to a place to make sure they don’t die.” D’Angelo says it’s important to get the word out that an SIF will be safe space not just hygienically for injection, but a place where nobody will be arrested and nobody will be picketing. In other words, though there’s increased awareness and interest in SIFs for harm reduction, groundwork still needs to be done to make these sites a reality throughout the U.S. Larry Buhl writes A&U’s monthly Hep Talk column.
nti-HIV agents currently being researched these days seem split between (1) improving regimens to improve a patient’s quality of life and range of treatment options for those who might become drug-resistant or need a more efficacious regimen, and (2) focusing on vaccine potential. Some agents attempt to straddle both. PRO 140, a fully humanized IgG4 monoclonal antibody delivered through a subcutaneous injection, is one such candidate. An entry inhibitor from CytoDyn, PRO 140 works to block CCR5, a co-receptor needed for HIV to enter a cell and continue its replication process. Active against HIV (R5) subtype, PRO 140 so far does not seem to interrupt the immune-response function of CCR5, while remaining active against CCL5, which activates the R5 coreceptor. Researchers are also looking at the potential of PRO 140 as a treatment for other diseases beyond HIV. Across seven clinical trials, PRO 140 has been shown to be safe, well-tolerated, and efficacious in significantly reducing or controlling viral loads in individuals living with CCR5-tropic HIV. As a candidate, it has earned fast-track status from the FDA. It should be noted that recent study results have not been published yet in any peer-reviewed journal, so we do not have the benefit of other scientists publicly weighing in on the credibility of the data. Researchers are currently studying PRO 140 as part of an optimized HAART therapy as well as a monotherapy, in patients who have become stable on combination therapy. With PRO 140’s expected commercialization in 2017 as an adjunct therapy with the appropriate green lights, its candidacy as a monotherapy, a treatment substitution for HAART, has received special focus. After the first group of participants in the CDI01 Phase 2b monotherapy study passed one year of viral load suppression, an extension study was set up and some of those participants substituting PRO 140 for HAART have continued to show virologic control. Ten out of the fourteen participants enrolled have achieved complete suppression of the virus for at least eighteen months, and, for several,
even longer. (One other participant had achieved viral suppression through seventeen months, but has since dropped out.) All have indicated an improved quality of life. Offering treatment-experienced HIV patients relief from the possibility of the long-term toxicity, sleep disruptions, and lower energy levels associated with some of the current antiretrovirals is what makes PRO 140 a hopeful candidate as a monotherapy, says Nader Pourhassan, PhD, CEO of CytoDyn Inc. Its development as a monotherapy candidate is a response to current patient needs rather than future ones, when it could prove useful as part of a combination regimen. “Twenty years ago [HIV/AIDS] was a deadly disease; now it’s a chronic disease. So you need to be able to give patients something that’s very much needed, which is to allow them to get off their pills for at least a period of time, which they’re not able to do now,” explains Dr. Pourhassan. “They’re sentenced to a life of taking pills every day, one, two, or three or up to seven or ten pills a day.” As mentioned, PRO 140 is concurrently being studied as a substitution, with the candidate alternating with HAART, and now as a monotherapy. Tolerability was shown to be good and “every patient reported a higher quality of life,” he notes. The data from the ongoing studies indicated to the research team members that they were looking at long-term monotherapy, not short-term. He points to candidates like PRO 140 as playing a part in reaching higher treatment as prevention (TasP) goals. “Only twenty-five percent of HIV patients in the United States have a suppressed viral load which means zero rate of transmission, [but] that’s not acceptable. Seventy-five percent do not have a suppressed viral load, which means that [regimens featuring] all pills is not the solution to this problem of getting everybody sup-
pressed,” he theorizes. He agrees that adherence to the candidate might be easier as well, due to the fact that PRO 140 could become a self-injectable requiring less frequent dosing. “We started testing these antibodies by using an IV, one infusion, to see how far we could go. At a higher dose we can actually go once a month. But ideally the way to go is a self-injectable, at home and very convenient, like patients with diabetes, who inject themselves every day, two times. This, however, is going to be once a week, and we believe we are going to make it once a month, once we get to post-launch,” he says. Researchers have established proof-of-principle for one injection every two weeks, he adds, but the company voted to first obtain approval for once a week to be safe and conservative. The research team will continue to study less frequent dosing afforded by the subcutaneous injections in relation to efficacy. CytoDyn is currently enrolling patients in its CDI-14 pivotal Phase III trial, for PRO 140 as a combination therapy with HAART, and plans to begin patient enrollment during the second quarter of 2016 in its CDI-18 Phase III trial, for PRO 140 as a long-term monotherapy. If PRO 14o comes of age as a monotherpay “[i]t would change the HIV paradigm. It would change how every expert thinks about HIV,” says Dr. Pourhassan. “And it would change patients’ quality of life in a tremendous fashion.” Chael Needle wrote about the Women’s HIV Program at UCSF in the April issue. A&U • MAY 2016
illustration by Timothy J. Haines
a self-injectable monoclonal antibody vies to become a monotherapy
Denial many states restrict daa coverage to the sickest hep c patients
hen direct-acting antiretrovirals (DAAs) for hepatitis C were new, some private insurers limited access to them, citing cost as a reason for rationing coverage. While many private payers have expanded their DAA reimbursement in the past two years, that’s not the case with Medicaid. And that’s a problem because many of the people with hepatitis C are Medicaid patients. In December, the U.S. Senate Finance Committee issued a report identifying some trends in coverage for hepatitis C. It showed that more than $1.3 billion was spent by Medicaid programs for Sovaldi in 2014, but only 2.4 percent of Medicaid patients with hepatitis C were treated with Sovaldi. The report also showed that nearly half of the states limited treatment to patients at stage three and four of liver disease. There’s increasing pressure being put on states to include DAA reimbursement for all of their Medicaid beneficiaries with hepatitis C, not just the sickest patients. It’s not clear whether this pressure will have much affect. Early last year the American Association for the Study of Liver Diseases (AASLD) put out clinical guidelines for when these meds should be prescribed. In that iteration the AASLD suggested that because of the cost of treatment, payers might prioritize the people who are the sickest. But the AASLD’s latest iteration of clinical guidelines backs off on that initial suggestion and now recommends treatment for everyone, regardless of the stage of that disease. Many states either haven’t gotten the message or are digging in their heels to avoid broader reimbursement for DAAs, even at a discounted price of around $40,000 per regimen, per patient. “So far we aren’t seeing much
movement from states to change their Medicaid policies on giving greater access to these medications,” says Abbi Coursolle, a staff attorney at the National Health Law Program (NHeLP). Coursolle says the practice of rationing drugs for only the sickest patients is a violation of the Medicaid Act. In March NHeLP sent a letter to Senators Ron Wyden and Chuck Grassley, the leaders of the Senate Finance Committee, asking them for urgent action to reduce costs for public payers. Colorado has one of the most restrictive
prior authorization criteria in the country. Medicaid patients need a fibrosis score of three or four and be abstinent from marijuana—which is legal in Colorado—and alcohol for one year prior to treatment. Nancy Steinfurth, executive director of Liver Health Connection in Denver, says Colorado Medicaid isn’t even familiar with their hepatitis C population. “The state says there are 8,500 Coloradans with hepatitis C among the 1 million registered for Medicaid. But they don’t know anything more about them. They don’t know their co-morbidities or their fibrosis scores.” Steinfurth says that not only is the state immoral to let people’s health deteriorate significantly before they can access DAAs, it’s penny-wise and pound foolish. “We commissioned a study showing the state would save money the next year [after hep C treatment]. When someone
clears the hepatitis C virus at any stage, there are higher costs that are avoided related to the virus. It can make their heart disease less significant or their diabetes or other ailments.” David Higginbotham is a fifty-fouryear-old plumber from Canon City, Colorado, who has had hepatitis C for many years and doesn’t know how he contracted it. He’s on Medicaid due to a few lean years and some ailments that sideline him from time to time. Because his F-score (fibrosis level) is 1, and Colorado Medicaid covers DAAs only for patients with F3 or F4, he can’t get the new meds that his doctor prescribed. “The doctor said I was covered for interferon treatment but not the new medication. I declined to do it because I was sick enough with pains in my back and throughout my body and the last thing I needed was what sounded like a brutal [interferon] regimen on top of that.” He hopes that his liver remains relatively healthy until Medicaid decides to pay for DAA for all hepatitis patients or until he can afford private insurance that covers DAAs. The Centers for Medicare and Medicaid Services (CMS) sent a Medicaid Drug Rebate Notice to the states, saying some state Medicaid programs may be violating the law by subjecting DAA HCV drugs to “conditions for coverage that may unreasonably restrict access.” But for now there’s no evidence that the federal government will try and force the states to let all Medicaid beneficiaries with hepatitis C to access DAAs. CMS could threaten to take some of the state Medicaid dollars away, but historically it’s not a stick that’s used often. Threatening to take away funding would be a high stakes game of chicken, Coursolle says. Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. A&U • MAY 2016
ometimes viewing a complex issue in its most simplistic form can help us to understand where a problem lies. HIV is a virus that has spread to pandemic proportions. Medical science is employed to limit the damage done by HIV. In order to control, and eventually eliminate HIV, we need to find efficacious strategies, technologies, and therapies focused on prevention, treatment and cure. To determine what will be helpful in this process, we conduct research which (with the exception of non-medical interventions) consists of laboratory research, animal studies, and human clinical trials to test these strategies, technologies and therapies. Funding is needed to perform medical research. Research should be continued or discontinued on the basis of efficacy and done so in a continual forward-moving process. We spend a couple hundred thousand dollars on lab tests. If the results show promise, we spend more money performing more research that will take us to animal studies. If the animal studies show promise, we move to Phase I clinical trials and so on. If something appears to work, it moves forward in this process. If it doesn’t, we disregard it and try something else. This sounds simple but, unfortunately, this is not what actually happens. The National Institutes of Health provide research grants to assist in the cost of research but it does so sporadically, with little regard for continuity. The result of this is that therapies, vaccines, cures and technologies that show promise, die in the pipeline due to a lack of funding. Here’s one example of a casualty of this process. In researching for this column and other articles I write, I found a 2003 press announcement that described a $357,000 grant from the NIH provided for research of a novel HIV vaccine. In vaccine development, $357,000, isn’t a lot of money, but for a preclinical potential vaccine, it’s a decent sum of our tax payer dollars. The vaccine, made by Antigen Express, appears promising. Early pre-clinical research was performed in conjunction with Dr. Bruce Walker, a leading HIV researcher. The vaccine
questions of efficacy remain unanswered when continuity of research funding lapses strategy intended to mimic immunological responses seen in long term non-progressors. In this vaccine platform, peptides are used to stimulate antigen-specific T-helper cell responses by addition of a fragment of the Ii immuneregulatory protein to the vaccine components. Peptides are very inexpensive to manufacture, making this an option for an affordable global vaccine. This vaccine could be studied as both a preventative and therapeutic vaccine, and as a stand-alone vaccine or one that could be used to help boost other vaccines. Extensive clinical studies have shown other vaccines designed using this platform are non-toxic. Further, the vaccine is not clade-specific so it could be used against all strains of HIV. So what’s happened to this vaccine candidate? Development was discontinued by its makers in 2010, not on the basis of poor efficacy but due to lack of funds. Could we have lost the vaccine that would have halted the spread of HIV and/ or allowed people with HIV to develop more efficient immune responses and discontinue ARVs? Who knows? Maybe, maybe not. Only more research could have determined that. Investing in vaccines or drugs here and there with no regard for what happens to the ones that show promise is a waste of money and good science, and slows the process of ending the HIV pandemic. Many HIV activists are currently meeting with U.S. Presidential candidates to help them establish an HIV agenda. Continuity of research grants should be included in that agenda. If something works, let’s see it through by creating a holistic view of funding through government, private and Foundation sources. Other vaccines that have received NIH funding and may be both preventative and
therapeutic include Paxvax, an HIV gag protein adenovirus vector vaccine, PTcell’s HIV-V immunotherapy and HIVAX, a replication-defective HIV vaccine. The 2017 NIH budget will consolidate the money spent on HIV research. They will be cutting a great deal of research projects, focusing only on priority issues, one of which is vaccines and other means of reducing new infections. To ensure the best interests of the HIV community are taken into account during this time of “refocused priorities,” a concerted effort must be made to determine and voice what we want to see studied. Many researchers have stated that the only effective way to end the HIV pandemic is through a preventative vaccine. However, if that vaccine cannot also be used to control HIV in the thirty-five million-plus individuals already living with HIV, it is unlikely that further therapeutic options will be developed for treatment of a dwindling consumer market. As we advocate for vaccines, we must ensure we do so for those that can act as both a preventative and therapeutic vaccine and that funds be available to move promising ones forward. 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 2016
A State of Mind
e have talked at length about complementary, alternative and integrative options that impact the body, our energy, and those that affect both simultaneously. When people speak of the assortment of alternative options, they use words like mind, body, spirit, and soul. I would like talk about a practice that begins in the mind and branches out to impact all the others. Meditation. More specifically, Transcendental Meditation. I will be the first to admit that I was skeptical about meditation. To clarify, I did not question its effectiveness in any way. Many of my friends and colleagues, people whose insight and opinions I trust, practice meditation and swear by it. My skepticism was personally rooted and came from my own self-doubt. My mind, much like many others, was rarely quiet and at ease. My body infrequently still. I therefore wondered, if even for a short period of time, that I could meditate. Though I may have doubted my ability to meditate, I was, in fact, the perfect candidate for it. Why? Perhaps the same as you. Stress. Now, we have talked about stress before and we are all aware of the varied negative health impacts of it. In fact, to further that point, according to the American Psychological Association, chronic stress is linked to the six leading causes of death— heart disease, cancer, lung ailments, accidents, cirrhosis of the liver and suicide. It is said that more than seventy-five percent of all physician office visits are for stress-related ailments and complaints. We know that chronic stress can affect your brain, suppress your thyroid, cause blood sugar imbalances, decrease bone density and muscle tissue, raise blood pressure, and increase fat deposits around your abdomen that may be associated with heart attacks, strokes, and elevated bad cholesterol levels. In addition, and of special note for individuals living with HIV/ AIDS, stress can reduce your immune function and ability to heal as a result of stress hormones released in the body. This is why the concept of relaxation through meditation can be an important consideration for the HIV/AIDS community when seeking out alternative, additional options.
At some point, I was introduced to Transcendental Meditation, or TM. TM, which was derived by the late Maharishi Mahesh Yogi from the ancient Vedic tradition of India, is said to have been brought to the west in the 1960s. It is a form of meditation said to help those who partake of it in avoiding distracting thoughts and promote a state of relaxed awareness. I was assured that it was a reasonably simple practice, that I would have the full support of the certified instructors, and that it was something I could practice for twenty minutes two times a day. I can certainly spare forty minutes a day for greater health. Interested parties attend an interview and receive ample personal instruction, classes, guidelines, feedback and corrections if needed, to help them in their journey. Following a brief ceremony, they’re each given a mantra, which they’re supposed to keep confidential. TM requires a seven-step course of instruction from a certified teacher, but it is not difficult to learn. It is not a religion, philosophy, or lifestyle, and people of all ages, cultures, and religions have indulged in the practice. TM allows your mind to settle inward, through quieter levels of thought, until you experience the most silent and peaceful level of your own awareness. My primary concern, perhaps a concern for many, was controlling my mind and the active, spiral of thoughts within. But unlike other forms of meditation, TM involves no concentration, no control of the mind, no contemplation, and no monitoring of thoughts. While in the process of meditating, the person practicing is comfortably seated with their eyes closed. At which time, they silently repeat a mantra. While TM is not what one might call mantra-based, they are used. A mantra is a meaningless sound from the Vedic tradition that’s been assigned by a certified instructor. Supporters of TM say that while they are meditating, the ordinary process of thinking is transcended. In its place is a
place of pure consciousness, giving the individual an opportunity to enjoy stillness, rest, stability, order, and an absence of mental boundaries. Will there be naysayers? Certainly. There are some researchers who find fault in the quality of meditation studies. Others say meditation is no more effective than health education in addressing most common health problems. But supporters of TM tout more than 380 peer-reviewed research studies on the TM technique—published in over 160 scientific journals. These studies were conducted at many U.S. and international universities and research centers, including Harvard Medical School, Stanford Medical School, Yale Medical School, and UCLA Medical School. Meditation, both TM and other forms, is generally safe for healthy people, and may improve quality of life. But experts agree that meditation shouldn’t be used as a single treatment for any particular health condition, or instead of conventional medical care. I invite you to explore TM as a possibility to enhance your current path towards greater wellness and draw your own conclusions based upon your individual experiences. 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 2016
illustration by Timothy J. Haines
got stress? explore transcendental meditation
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E R U T L U C S THE
Our Young Man by Edmund White Bloomsbury
wo seminal novels have been written about gay life in Manhattan and Fire Island in the seventies and eighties that many of us know and love, Larry Kramer’s Faggots and Andrew Holleran’s Dancer From the Dance. They’re not the only authors who have documented the era, but they are certainly the best. It was not only a vital and important time in gay life, but in American culture as well. Edmund White was a witness to this time in history and has certainly documented the time well himself, but with Our Young Man he delivers a book that’s almost a companion to these two, although entirely different, especially in one critical way. Written in the twenty-first century, through eyes that have stayed modern and fresh, he can write about what happened to his characters well into the AIDS era. While the other two foreshadowed it as we read them now, the screw had not yet turned. The novel’s protagonist, Guy, comes of age in a bleak, small, industrial French town. Truly great beauty is really nothing more than an accident of genetics and Guy is aware of his at a young age. On a trip to Paris, he is discovered by Pierre-Georges, who becomes his lifelong manager and friend, and is given the requisite makeover. His hair is colored, he’s sent to the gym, and given an updated wardrobe. He’s initially surprised when Pierre-Georges doesn’t expect anything from him sexually, but soon learns that his new manager prefers rougher trade, middle-aged working men he picks up at a small Paris bar specializing in them. Guy’s very French attitudes and perceptions color the whole novel and provide much of its surprising
humor. Having lived and worked in Paris for years and given the fact that the love of White’s life was French, he understands the unique, very different French mind set and culture the way those of us who have only vacationed there may not. They simply think and see the world differently than Americans “That’s like like asking why English words are spelled the way they are. Because. Just because,” Pierre-Georges says ruefully to Guy. The French are pragmatic whereas Americans deal from emotion and feelings. It colors all their perceptions, even those of death. White understands all of his characters innately; their virtues, their flaws, even those colored by nationality, are brought to life. Their interactions and verbal exchanges aren’t always predictable, but they ring with truth and humanity. Guy embarks on a modeling career that spans the seventies and eighties. In an era and industry that makes a cult of youth, he’s like a fly in amber—he simply does not age. It is remarked upon wryly by one observer: “But he looks so young, he must have a terrible painting in the attic.” White uses this premise to say a lot about beauty, its power and its drawbacks. Good looks are like currency in the gay community as well as in the world at large, at least they’re traded as such, giving them who possess it definite advantages. But, beauty can be its own kind of prison, it can keep people at arm’s length. Guy is showered with gifts and valuable real estate for sexual favors, often for not having much real sex at all. And Pierre-Georges encourages what he sees as an investment in Guy’s future. He discourages meaningful connections with men who can’t service Guy’s career or secure a financial security against a day when his looks run out. Guy arrives in New York City on the edge of thirty, well past the sell-by date for a model, but still passes for twenty-three. The gay sexual revolution is at its height. Life revolves for the gay A-list around the clubs and parties of the city and its hedonistic summer playground Fire Island. There are so many landmarks and touchstones of gay New York of the period. (I hadn’t thought about Uncle Charlie’s, a Village bar, in years.) White
tempers explicit tales of the sexual exploits of the time with humor and wit, softening what to outsiders might seem coarse and indulgent. But, storm clouds are gathering on the horizon. A mysterious “gay cancer” appears and no one knows exactly how or why it is spreading. It progresses steadily, taking many men at the height of their powers, its name changing (next called GRID, and finally, eventually, AIDS) as the body count rises. White brings a compelling and original perspective to the fore. As stark as the landscape became with the spread of AIDS, an ageless Guy can only live in the present. Just as for any young man of the time, there is some life beyond AIDS. In two major and faithful relationships, he manages to avoid the disease that kills many of his peers. He is affected by the crisis, but unlike many others, he does not protest and lay in the streets fighting an indifferent government and country. Not that that should be something that one should brag about, but it is true that there were those who just wanted to forget what was happening, they grew weary of death. It makes sense that a man who simply refused to grow old would want to ignore a disease that ages and kills its victims. Guy is no hero, but he is human and not alone. Our Young Man is a novel by one of America’s masters of prose still, at seventy-four, at the height of his powers. He again brings his deep understanding of what it means to be human to the page and does so uniquely and with great sensitivity. White has been an chronicler of gay life in the U.S., but this work is something different for him. It explores a time in New York when he himself had lived in Paris. It adds a unique story and perspective to an already prolific body of work. —John Francis Leonard
Stand By Me by Jim Downs Basic Books
tand By Me: The Forgotten History of Gay Liberation is historian Jim Downs’ attempt to correct the prevailing idea, among mainstream (straight) historians and some gay folks, that after the StoneA&U • MAY 2016
African-American men and women from the gay liberation movement. That strikes me as quite a facile stretch, unworthy of the rest of the book. Despite that shortcoming, Stand By Me is a laudable, thoroughly researched corrective to the prevalent idea of gay people in the 1970s as uninvolved, unengaged sex-crazed hedonists. —Hank Trout
Black Deutschland by Darryl Pinckney Farrar, Straus & Giroux
wall uprising of 1969, the 1970s were nothing more than one long apolitical orgy that inevitably led to AIDS, and to demonstrate that gay life in the 1970s encompassed more than just sexual abandon. In many ways, the book is quite successful at resurrecting our community’s real history. Beginning with “the largest massacre of gay people in American history,” the torching of the Up Stairs Lounge in New Orleans in June 1973, in which thirty-two gay men and women perished as they conducted worship, Downs examines the growth of the Metropolitan Community Church and other gay-friendly religious organizations as one of our community’s first alternatives to the bars and bathhouses. His research is impeccable; his description of the fire and the deaths Up Stairs is heart-wrenching. From there, Downs uses Craig Rodwell’s Oscar Wilde Memorial Bookstore, the first non-porno gay bookstore in the country, and Jonathan Ned Katz’s groundbreaking Gay American History as evidence of the first recognition of literature, culture, and history that is distinctly gay. He documents the role of gay newspapers, primarily Toronto’s The Body Politic, in creating community, enabling gay folks around the globe to explore and debate being gay as a cultural, historical phenomenon for the first time. The least successful chapter in Stand By Me is the last, “Body Language,” in which Downs seems to assert that the late-decade rise of the “macho clone” image (short hair, mustache, jeans, boots, worked-out muscular bodies) was a calculated attempt by white gay men to exclude MAY 2016 • A&U
hen I recently began to publish book reviews for A&U, one thing was very important to me. Not only would I review works dealing with AIDS and HIV, but I’d find different voices and varied perspectives. Darryl Pinckney’s latest novel gives us just that and more. Its protagonist is Jed, a young black man in the latter half of the eighties losing himself in the life of an American expat finding his way in the last days of divided Berlin. Jed, a recent transplant from Chicago, is looking to recreate himself in Berlin. He’s newly sober after dropping out of college twice. A job dealing with PR and writing for a megalomaniac of an architect and urban planner looking to re-shape Western Berlin helps to keep him busy, he still flirts with danger a lot. He’s obsessed with a dive of a place called the Kiki Club and makes many friends and meets many men there. Pinckney doesn’t end the Isherwood references there; our protagonist is obsessed with Isherwood’s stories of Berlin. He initially lives in the maid’s quarters of a vast pre-war apartment. Instead of Frl. Schroeder, his landlady is his cousin Cello (née Rachael). Cello was a promising young concert pianist raised by and spoiled by Jed’s mother until an epic battle with stage fright ruined her career. She’s now the wife of a wealthy German manufacturing heir and distrusts her cousins nascent sobriety and initially fears her children coming into contact with AIDS. Jed moves back and forth from his parent’s home in Chicago as he battles his demons. His fear of AIDS isn’t unlike his cousin’s either; it’s early days for the virus and Jed initially feels safer picking up much older men whom he doesn’t see as high risk. When back in Chicago, he and his family have an awk-
ward encounter with the lesion-covered grandson of of an elderly relative who drops in for a visit. Both are guileless and refuse to acknowledge AIDS when questioned by Jed’s socially conscious mother even though the man is obviously suffering from Kaposi’s sarcoma. Like I said, it’s early days in the epidemic and this isn’t New York City or San Francisco, and Jed quickly wipes down the keyboard of the piano the young man played after he leaves. Black Deutschland brings several things to life with a poignant honesty. The life and outlook of a young gay black man is one we don’t see often enough. Life in West Berlin in Commu-
nism’s last gasp of breath is beautifully rendered and remembered with a vivid sense of time and place. Most effectively we see black middle-class family life in the second half of the twentieth century. Over all of this a burgeoning AIDS crisis looms large and it is seen through eyes of those not living in the ground zeros of New York and San Francisco. All of this is brought to life with a brilliant use of metaphor and characters who are not always heroes but shockingly human and real. —J.F.L. John Francis Leonard writes A&U’s monthly Bright Lights, Small City column. Hank Trout is a regular contributor to A&U. His feature on the film Last Men Standing appears in this issue.
A Calendar of Events
Faith Leaders and Community Summit and Annual Gospel Concert featuring JJ Hairston & Youthful Praise June 18, 8 a.m.–4 p.m. End AIDS: The HIV Prevention and Outreach Summit, June 22, 8 a.m.–6 p.m. Opening Plenary Speaker: Dr. Rachel Levine, The state of Pennsylvania’s Physician General (Dr. Levine is also serving as AEM’s Honorary Chair); Dr. Demetre Daskalakis, Assistant Commissioner of the Bureau of HIV/AIDS Prevention and Control of the NYC Department of Health and Control; Louie A. Ortiz-Fonseca, creator of the Gran Varones. Community Cookout, June 25, 12 p.m.–3 p.m. Hip Hop for Philly, June 26, 7 p.m. to 11 p.m. Tickets are free for youth, ages thirteen to twenty-four, who come in for a free HIV test at participating locations. AEM partner events are also planned. To register for any of the month’s events or for more information, please visit www.aidseducationmonth.org or call (215) 985-4448, ext. 200.
A&U • MAY 2016
photo by Holly Clark
It’s June, so school is out, right? Nope. School is in for Philadelphia FIGHT. Though the nonprofit promotes educational events all year round, it reserves June for AIDS Education Month (AEM). Now in its twenty-second year, AEM organizes a series of free events, conferences and workshops to increase AIDS awareness and exchange the most up-to-date, advanced HIV information. Across Philadelphia, AEM reaches over 10,000 individuals. AEM kicks-off on June 1 with an opening reception and awards ceremony, where Decarcerate PA will be presented with the 2016 Kiyoshi Kuromiya award. Other events include: Movements for Change, June 2, 12–1:30 p.m.. This year’s theme is Black Trans Lives Matter. Jonathan Lax Memorial Lecture, June 7, 6–8:00 p.m. Featured speaker: Dr. James Hoxie, Director of the University of Pennsylvania Center for AIDS Research. Beyond the Walls: Prison Healthcare and Reentry Summit, June 15, 8 a.m.–6 p.m. Opening Plenary Speaker: activist Maxx Boykin.
MAY 2016 • A&U
[a portrait by sean black]
Cathy Elliott “You don’t know what you don’t know…until you know. In my twenties and thirties, I never fully grasped how much I was missing out by not pursuing the benefits of higher education. Now at age fifty-two, with a second graduate degree under my belt, I’ve found that ongoing education is one of the best survival tools I have. My mind keeps expanding with every new venture, and so does my student loan balance, but it’s a sacrifice well worth it.” Cathy Elliott is an HIV treatment educator, advocate, and member of the Board of Directors of PWN-USA. Diagnosed in 1995, at a time when effective treatments were scarce and the prognosis for survival was slim, Cathy dedicated herself to learning everything she could about the disease. This drive for education led her to several HIV organizations in Los Angeles where she found information and support. It’s also where she found her own passion for helping others. Through her candor in speaking publicly about HIV and the negative life choices that led to her infection, Cathy has worked hard to build a legacy of acceptance, caring, and tolerance for all people living with HIV. In her current role as a Community Liaison for Merck & Co, Cathy provides comprehensive education to service providers who work with HIV-positive individuals throughout southern California and Hawaii.
Sean Black is a Senior Editor of A&U. 72
A&U • MAY 2016
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Published on May 1, 2016
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