A&U August 2016 by A&U: America's AIDS Magazine

AUGUST 2016 • ISSUE 262 • AMERICA’S AIDS MAGAZINE

LONG-TERM THRIVING Marianne Williamson • Jesús Guillén • Rob Quinn

plus

A&U’s Summer Reading Issue featuring Christopher Hewitt Award Winners Marie Esposito • Jennifer Sembler • Benjamin S. Grossberg

mary BOWMAN Poet & Advocate

RAISES AWARENESS ABOUT PERINATAL HIV INFECTION & THE NEED FOR SELF-CARE

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 EJCPEG QH UGZWCN EQPVCEV YKVJ DQF[ ƃ WKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ ƃ WKFU QP VJGO

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. &Q PQV UVQR VCMKPI )'081;# YKVJQWV Ƃ TUV VCNMKPI VQ [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 IGV UVTQPIGT CPF DGIKP VQ Ƃ IJV KPHGEVKQPU 6GNN [QWT JGCNVJECTG 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.

SHOW YOUR

POWER

Take care of what matters mostâ&#x20AC;&#x201D;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.

ABOUT GENVOYA

• 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. GENC0048 04/16

Benefiting

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. â&#x20AC;&#x201D; Andrew, Rider No. 109

Boston

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016

Septe

5, 2 2 â&#x20AC;&#x201C; 3 2 r mbe

brakingaidsride.org 866-858-6877

c o n t e n t s August 2016

44 Cover Poet & Advocate Mary Bowman Talks to A&U’s Chael Needle About Her Creative Approaches to Spoken Words and Advocating for Individuals Living with Perinatal HIV Infection

Features 30 Gallery Photogs Lester Blum & Vladimir Rios Counter the Invisibility of LGBTQ and Positive Identities 34 Time & Telling A&U’s Fouth Annual Christopher Hewitt Awards Features Work by Marie Esposito, Jennifer Sembler & Benjamin S. Grossberg 38 DREAMS Team An HIV Prevention Effort Reaches Out to Young Women & Girls 40 Emerging Enlightenment Spiritualist Marianne Williamson Reflects on HIV Support in the Early Days of the Epidemic & Starting Project Angel Food 50 Surviving Still Jesús Guillén Advocates for the Needs of Long-Term Survivors cover photo by Sean Black

Departments 7

Frontdesk

Mailbox

NewsBreak

Ruby’s Rap

viewfinder 22

Just*in Time

My Turn

Our Story, Our Time

Bright Lights, Small City

Second Acts

Brave New World

lifeguide 54

Hep Talk

Under Reported

The Culture of AIDS

Lifelines

Survival Guide

THIS PAGE INTENTIONALLY BLANK

PHOTOGRAPHY Sandro | DANCER Tom Mattingly

Chicago Dancers United presents August 20, 2016 5pm Hilton Chicago’s Grand Ballroom 7:30pm Auditorium Theatre of Roosevelt University PERFORMANCES BY Giordano Dance Chicago Hubbard Street Dance Chicago Joffrey Ballet Chicago Dance Crash Visceral Dance Chicago

S P ON S OR S

WORLD PREMIERES BY Randy Duncan Harrison McEldowney EMCEES Carisa Barreca and Tim Mason of The Second City BENEFICIARIES The Dancers’ Fund AIDS Foundation of Chicago $15 – $75 Performance Only $250 – $600 Includes admission to the 5:00p.m. gala reception and premiere seating at the performance

ChicagoDancersUnited.org | 312-922-5812 /DanceForLifeChicago

@danceforlifechi

/DanceForLifeChicago

A&U Frontdesk

Conventional Speech

tlantan Daniel Driffin, a gay Black man living with HIV, spoke at the 2016 Democratic National Convention to support the Presidential nomination of Hillary Clinton [A&U, April 2005]. What a beacon of hope! The thirty-year-old is the founder of both Thrive SS and Undetectables Atlanta, a group of over 400 gay and bisexual men with HIV; he also serves as co-chair of the Task Force to End AIDS in Fulton County, Georgia, and is Youth HIV Policy Advisor for the LGBT organization Georgia Equality [A&U, April 2016]. In his speech, Driffin listed Clinton’s achievements in the fight against AIDS but also gave voice to a generation at risk: “We know how to prevent the virus now. We know how to diagnose the virus now. We know how to treat it and we know how to suppress it. We have learned all about it within my lifetime. But still, there are many living with HIV. And do you know who is most at risk? Young gay black men. Men like me. In fact—one in two gay black men will be diagnosed with HIV in their lifetime if current rates continue. If we have enough data, I’m sure black transgender women are more at risk, too.” As Driffin states, we are no longer in the dark about HIV transmission and treatment and it reminded me how far we’ve come since Mary Fisher [A&U, February 2001], a woman living with HIV, spoke at the 1992 Republican National Convention. Her plea to end prejudice resonates today: “We may take refuge in our stereotypes, but we cannot hide there long, because HIV asks only one thing of those it attacks. Are you human? And this is the right question. Are you human? Because people with HIV have not entered some alien state of being. They are human. They have not earned cruelty, and they do not deserve meanness. They don’t benefit from being isolated or treated as outcasts....” Twenty-four years later we are still fighting for inclusion because not everyone living with HIV in the U.S. has access to lifesaving medications. Or, sometimes, even if they have access, the

AMERICA’S AIDS MAGAZINE issue 262 vol. 25 no. 8 August 2016 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner

stigma of others and self-stigma prevents them from getting tested or, if positive, staying on top of their health. We need to get better at inclusion because, as Fisher stated, we are a nation at risk. Sometimes even our own AIDS community forgets about the health of individuals who are trans. Or we forget about the needs of long-term survivors. As Mary Bowman, this month’s cover story, tells A&U’s Chael Needle, we often forget about individuals living with perinatal HIV infection. Bowman is determined to include others like herself whose voices are not being heard: “We’ve lived through these experiences since birth, through our entire lives. And, so, one, I feel like we have a lot more experience than people really [give us credit for] and, two, our stories are valid, and I don’t think they [are recognized as such]. That’s why I do what I do because I want to create a space for perinatally infected youth and adults to tell their stories because we’re so unrecognized—and that’s not fair.” Creating a space for underrepresented voices is really what this magazine has been about from the start in 1991. As you read this issue, note our Gallery interview with Lester Blum and Vladimir Rios, who are fighting for LGBTQ and positive visibility. Or read the columns Brave New World, by Corey Saucier, or Our Story, Our Time, by George M. Johnson, both of which broadcast that Black Lives Matter. Read Hank Trout’s interview with Jesús Guillén, who is intent on expanding support for long-term survivors, or Dann Dulin’s interview with Marianne Williamson, one of those who identified the need for HIV support early on in the epidemic. As Fisher pointed out in her speech, inclusiveness has no political party. We must continue to cast our votes for individuals living with HIV/AIDS, even if we do not see ourselves on the ticket. Write your name. Write my name. Write our names. Our lives depend on it!

DAVID WAGGONER

Managing Editor: Chael 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, Larry Buhl, Ruby Comer, Diane Goettel, Sally Hessney, George M. Johnson, John Francis Leonard, Angela Leroux-Lindsey, Dale Reynolds, Elizabeth Rodgers, Connie Rose, David Rosenberg, Corey Saucier, Stevie St. John, Justin B. Terry-Smith, Hank Trout, Patricia Nell Warren, Chuck Willman, Jeannie Wraight, Rob 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

WHAT IS ODEFSEY®? ODEFSEY 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, have never taken HIV-1 medicines before, and have an amount of HIV-1 in their blood (“viral load”) that is no more than 100,000 copies/mL; or in 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. ODEFSEY combines 3 medicines into 1 pill taken once a day with a meal. ODEFSEY is a complete HIV-1 treatment and should not be used with other HIV-1 medicines. ODEFSEY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking ODEFSEY. 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 EJCPEG QH UGZWCN EQPVCEV YKVJ DQF[ ƃ WKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ ƃ WKFU QP VJGO

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about ODEFSEY? ODEFSEY may cause serious side effects:

• Buildup 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 “tea-colored” urine; loss of appetite; light-colored bowel movements (stools); nausea; and/or pain, aching, or tenderness on the right side of your stomach area. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight, or have been taking ODEFSEY or a similar medicine 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 virus (HBV) infection. ODEFSEY

is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking ODEFSEY, your HBV may suddenly get worse. &Q PQV UVQR VCMKPI 1&'(5'; YKVJQWV Ƃ TUV VCNMKPI VQ [QWT healthcare provider, as they will need to monitor your health.

Who should not take ODEFSEY?

Do not take ODEFSEY 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 ODEFSEY. 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 ODEFSEY?

Serious side effects of ODEFSEY may also include: • Severe skin rash and allergic reactions. Skin rash is a common side effect of ODEFSEY. Call your healthcare provider right away if you get a rash, as some rashes and allergic reactions may need to be treated in a hospital. Stop taking ODEFSEY and get medical help right away if you get a rash with any of the following symptoms: 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, and/or dark “tea-colored” urine. • Depression or mood changes. Tell your healthcare provider right away if you: feel sad or hopeless, feel anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself. • Changes in liver enzymes. People who have had hepatitis B or C or who have certain liver enzyme changes may have a higher risk for new or worse liver problems while taking ODEFSEY. Liver problems can also happen in people who have not had liver disease. Your healthcare provider may do tests to check your liver enzymes before and during treatment with ODEFSEY. • Changes in body fat, which can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system OC[ IGV UVTQPIGT CPF DGIKP VQ Ƃ IJV KPHGEVKQPU 6GNN [QWT healthcare provider if you have any new symptoms after you start taking ODEFSEY. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you to stop taking ODEFSEY if you develop new or worse kidney problems. • 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 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 effects that bother you or do not go away.

What should I tell my healthcare provider before taking ODEFSEY?

• All your health problems. Be sure to tell your healthcare

provider if you have or have had any kidney, bone, mental health (depression or suicidal thoughts), 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 ODEFSEY 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 ODEFSEY with all of your other medicines. • If you 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. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

Ask your healthcare provider if ODEFSEY is right for you, and visit ODEFSEY.com to learn more. 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 ODEFSEY including important warnings on the following page.

ODEFSEY does not cure HIV-1 or AIDS.

SHOW YOUR

RADIANCE

ODEFSEY is a complete, 1-pill, once-a-day HIV-1 treatment for people 12 years and older who are either new to treatment and have less than 100,000 copies/mL of virus in their blood or people whose healthcare provider determines they can replace their current HIV-1 medicines with ODEFSEY.

IMPORTANT FACTS This is only a brief summary of important information about ODEFSEY® and does not replace talking to your healthcare provider about your condition and your treatment.

(oh-DEF-see) MOST IMPORTANT INFORMATION ABOUT ODEFSEY

POSSIBLE SIDE EFFECTS OF ODEFSEY

ODEFSEY may cause serious side effects, including:

ODEFSEY can cause serious side effects, including:

•

Buildup 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; loss of appetite; light-colored bowel movements (stools); nausea; and/ or pain, aching, or tenderness on the right side of your stomach area. Worsening of hepatitis B (HBV) infection. ODEFSEY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking ODEFSEY. Do not stop taking ODEFSEY 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 ODEFSEY or a similar medicine for a long time.

•

• • • • • • •

Those in the “Most Important Information About ODEFSEY” section. Severe skin rash and allergic reactions. Depression or mood changes. Changes in liver enzymes. Changes in body fat. Changes in your immune system. New or worse kidney problems, including kidney failure. Bone problems.

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. These are not all the possible side effects of ODEFSEY. Tell your healthcare provider right away if you have any new symptoms while taking ODEFSEY. Your healthcare provider will need to do tests to monitor your health before and during treatment with ODEFSEY.

BEFORE TAKING ODEFSEY

ABOUT ODEFSEY •

•

ODEFSEY 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 and who have an amount of HIV-1 in their blood (“viral load”) that is no more than 100,000 copies/mL. ODEFSEY can also be used to replace current HIV-1 medicines for some people who have an undetectable viral load (less than 50 copies/ mL), have been on the same HIV-1 medicines for at least 6 months, have never failed HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements. ODEFSEY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.

Do NOT take ODEFSEY if you: • Take a medicine that contains: carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), dexamethasone (Ozurdex®, Maxidex®, Decadron®, Baycadron™), 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®), or rifapentine (Priftin®). •

Take the herbal supplement St. John’s wort.

•

Take any other HIV-1 medicines at the same time.

Tell your healthcare provider if you: • Have or have had any kidney, bone, mental health (depression or suicidal thoughts), or liver problems, including hepatitis infection. • Have any other medical condition. • Are pregnant or plan to become pregnant. • 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 ODEFSEY.

HOW TO TAKE ODEFSEY • •

ODEFSEY is a complete 1-pill, once-a-day HIV-1 medicine. Take ODEFSEY with a meal.

GET MORE INFORMATION •

• •

This is only a brief summary of important information about ODEFSEY. Talk to your healthcare provider or pharmacist to learn more. Go to ODEFSEY.com or call 1-800-GILEAD-5 If you need help paying for your medicine, visit ODEFSEY.com for program information.

ODEFSEY, the ODEFSEY Logo, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: March 2016 © 2016 Gilead Sciences, Inc. All rights reserved. ODEC0026 06/16

A&U • JULY 2016

x o b l i ma Long-Time Advocate Reading your article about Joel Goldman, I was really impressed by his

Glaser Pediatric AIDS Foundation; no doubt this is one of the premier AIDS organizations in the world. I really think that Joel Goldman is doing great things and good works in the fight against the AIDS pandemic. —Martha Rivers-Stein Carrolton, Georgia I love it that UCLA has a Sex Squad

JUNE 2016 • ISSUE 260 • AMERICA’S AIDS MAGAZINE

REDEFINING AIDS LEGACIES

• Robert Mapplethorpe • Tara Kulbatski • Hank Trout • #StopErasingBlackPeople • Quinn Tivey

plus

• Linda Clifford • Rachel Levine • Emerson Collins

joel GOLDMAN

photo by Sean Black

THE ELIZABETH TAYLOR AIDS FOUNDATION’S MANAGING DIRECTOR HELPS FUEL MOMENTUM IN THE FIGHT AGAINST AIDS

background in becoming the successor to Elizabeth Taylor at the Elizabeth Taylor AIDS Foundation [cover story, “Footsteps,” by Dann Dulin, June 2016]. I know it must be tough to replace Elizabeth Taylor and all she did to fight AIDS for such a long time. I think that Joel Goldman is going to be a worthy successor—of course no one can really replace Elizabeth Taylor, she is in our hearts forever. I am also impressed with Joel for working with the Elizabeth AUGUST 2016 • A&U

Program that is going to fund sex education in colleges in the South to fight AIDS. This is what we really need, especially to reach students in the South where AIDS is growing the fastest. Joel Goldman said: “Inadequate sex education is a major contributor to the challenge facing teens in properly estimating their HIV risk.” I agree that a lot more effort is needed in the South to combat this deadly disease. And I’m

glad that ETAF focuses its efforts in the U.S. as well as in places like Africa. —Benny Soloman Flint, Michigan While activists made progress in the streets, Elizabeth Taylore made progress within the halls of our nation’s capital and within the scientific community. As an advocate, she had a different kind of megaphone and I am thankful she “acted up” in her own way. How wonderful that her estate, as well as her grandchildren, continue her activism through The Elizabeth Taylor AIDS Foundation. Joel Goldman, as managing director, seems like a great

“As an empowered individual living with HIV, Joel Golman is a great role model for a new generation of AIDS advocates, both at home and abroad. Elizabeth Taylor would be proud.” fit for this much-needed work. As an empowered individual living with HIV, he is a great role model for a new generation of AIDS advocates, both at home and abroad. Elizabeth Taylor would be proud. Thank you, A&U, for shining a spotlight on this organization. —Jim Pickler Needles, California

Fleurs du Mal I read your article on Robert Mapplethorpe and I am sorry, no, I am really not sorry at all [Gallery, June 2016]. I find this man to be really disgusting and revolting. I am really surprised that you didn’t show his graphic sexual pictures with men’s sexual organs exposed. At least your magazine has the taste to not show all the sexual stuff. I mean his flowers are really nice, but that is not what most people remember him for. This is my opinion and I think a lot of people agree with me. —Barry Mariner Gary, Indiana All I can say is, thank God for people like Robert Mapplethorpe. He was a pioneer, he was way ahead of his time, and

we have lost to AIDS so that they do not become faceless numbers. —Joyce Franklin Dorchester, Massachusetts

Boy Crazy Thanks, Ruby for that very lovely story on Emerson Collins [June 2016]. He is very cute and I am sure that he will go very far. All the girls and some of the boys will fall in love with Emerson Collins. They can come to my town anytime and perform. I am glad he is so articulate about fighting AIDS. —Fran Rubella Salt Lake City, Utah

Black Lives Matter

Disco Horizon “Look Now!” Great title and great article by Dann Dulin. I am looking now and to the past of great disco music. Linda Clifford was riding the crest of the wave of disco [June 2016]. “If My Friends Could See Me Now” was my favorite song of that era. Of course, I loved all the

singers of that period. How can you not love Gloria Gaynor [A&U, April 2013] and Donna Summer? They were all great. I say bring this music back, we really need it. And bring back the spirit of freedom we felt when we all danced in that space. It really felt like a political statement— disco was not simply vacuous pop music! I know I did not say anything about Linda and AIDS. But she’s always been there for us, doing benefits in honor of the two brothers she lost, and using her incredible voice. —Randy B. Devotion Santa Cruz, New Mexico I cannot imagine what it must be like to lose two brothers to AIDS, as Linda Clifford did. She is an angel and someone the AIDS community needs on its side. Although I enjoyed the article, I wanted to hear more about her brothers. Who were they? What were they like? I firmly believe we need to create portraits of those

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

A&U • AUGUST 2016

photo by Sean Black

he was an artist’s artist. He was not afraid to challenge people’s perception of things, showing the world as it is and not as they want to pretend it is. There is nothing wrong with showing sexual images of gay men having relations with other men and there is nothing wrong with showing sexual organs, whether erect or not. I am really fed up with this still puritanical outlook that exists in this country. Really, we need to get away from with this view. Rest in peace, Robert Mapplethorpe. —Marty Bledsoe Knoxville, Tennessee

Larry Buhl’s piece on institutional racism in the art world and the underrepresentation of Black artists in the exhibit, “Art AIDS America” [“White Walls,” June 2016] provided a fair and balanced perspective of both sides of the issue. It reminded me of that recent movie, Stonewall, where queer people of color and trans activists were relegated to the sidelines while yet another white “hero” took center stage. While I realize that exhibits and movies need to sell tickets, we cannot sell out history in the process. The curators of “Art AIDS America” claim that Black artists were not represented because they were looking at how the art world has historically represented AIDS. They should have realized that the art world has made major omissions and should not have repeated them! I’m glad the dialogue was started by the Tacoma Action Collective so that we can begin to represent everyone who was affected by AIDS, not just those who had the resources to produce and exhibit art or finance a movie. Let’s now focus our attention on getting it right! —Sheldon Griffith Nyack, New York

AUGUST 2016 â&#x20AC;¢ A&U

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NewsBreak

NEWSBREAK Saddle Up LA On July 9 in Glendale, California, Angelenos dedicated to helping raise awareness and funds for HIV/AIDS support services donned their cowboy or cowgirl hats, riding boots, or at least their smiles for the eleventh annual Saddle Up LA, an AIDS Benefit Horseback Trail Ride and Country BBQ. Hardly a fringe event (it sold out), Saddle Up LA lassoed sixty participants for the scenic ride and more than 125 bellied up to the cookout, which also offered, besides delicious BBQ, dancing, a silent auction, and live performances and entertainment by Pepper MaShay; Chico’s Angels; Mystery Mike Hennessey, LA Wranglers, and DJ Rick. (Also, check out this month’s Survival Guide featuring Matthew McLean, a long-time supporter of the nonprofit.) Top: Sunnie Rose Berger, In all the event raised over $70,000 for the executive director of The Los Angeles-based nonprofit The Life Group LA Life Group LA and the POZ Life Weekend Seminar, which offers Bottom: Pepper MaShay much needed information and emotional support and Ellen Osborne through medical forums, emotional support groups for those who are infected and affected by HIV/ AIDS, and an educational series of workshops that deal with living effectively with HIV/AIDS. The seminar is designed for individuals who are newly infected, long term survivors, (living with HIV ten years or more), significant others and HIV healthcare providers. Topics include: HIV drug treatment options, insurance and public benefits, stress management, alternative and complementary therapies, gynecological manifestations of HIV, nutrition, medication adherence, recreational drug use, clinical trials, relationships, goal setting, managing side effects and HIV disclosure, among others. Registration is now open for the next POZ Life Weekend seminar, set for August 20 and 21 in Long Beach, California. For more information about Saddle Up LA, log on to: www.SaddleUpLA.org. For more information about Life Group LA, log on to: www.theLifeGroupLA.org.

photos by Sean Black

PARTNER’s Zero Transmissions Indviduals living with HIV, engaged in care, and adherent to antiretroviral therapy to the point of suppressing the virus to an undetectable level can feel more confident in their health as well as their sexual lives, thanks to a new study. The PARTNER (Partners of People on ART—A New Evaluation of the Risks) study provides overwhelming evidence that the risk of an HIV-positive individual, with an undetectable viral load and engaging in condomless penetrative anal or vaginal sex, transmitting the virus to a HIV-negative sexual partner may really only be theoretical. “The estimate of the overall transmission rate, and the transmission rate for anal sex, was zero. However, 95% confidence limits suggest that with eligible couple-years accrued so far, appreciable levels of risk cannot be excluded, particularly for anal sex and when considered from the perspective of a cumulative risk over several years,” states Alison J. Rodger, et al, in the article “Sexual Activity Without Condoms and Risk of HIV Transmission in Serodifferent Couples When the HIV-Positive Partner Is Using Suppressive Antiretroviral Therapy,” published in the July 12, 2016 edition of the Journal of the American Medical Association. Only eleven HIV-negative partners seroconverted to positive. However, it should be noted that these transmissions could not be linked back to the partners in the study. No phylogenetically linked transmissions occurred over eligible couple-years of follow-up The prospective, observational study, which took place across seventy-five clinical sites in fourteen European countries, enrolled AUGUST 2016 • A&U

NewsBreak 1,116 HIV serodifferent couples who reported condomless sex between September 2010 and May 2014, where the HIV-positive partner was on suppressive antiretroviral therapy and the negative partner was not on PrEP or had used PEP. A total of 1,238 eligible, follow-up couple-years was provided from 548 heterosexual (36,000 condomless sex acts) and 340 MSM (22,000 condomless sex acts) couples. (Not all of the starting total of couples met the full criteria.) Couples reported condomless sex for a median of two years, at baseline. In addition, 108 HIV-negative MSM and twenty-one heterosexuals reported condomless sex with other partners. Longer follow-up data is needed to cull more specifics about risk, the researchers stated.

Global AIDS Response at Code Red

Judge Hatchett Glenda A. Hatchett, one of the founding members of the national law firm, The Hatchett Firm, and star of her own court television show, will soon be back in court as an attorney representing the family Philando Castile, a school nutrition supervisor at J.J. Hill Montessori School, in civil legal matters. Castile was shot and killed by a police officer during a traffic stop in Falcon Heights, a St. Paul, Minnesota, suburb. The shooting was livestreamed by Castile’s girlfriend, Diamond Reynolds, who was in the car with her young daughter. Activists have pointed out that the homicide is an example in a long series of police officers using unnecessary force against citizens of African descent. An investigation into his death remains ongoing. Stated Judge Hatchett in a prepared releases: “I am deeply concerned about what seems to be an epidemic of African-American men being killed by police officers. We have often seen demonstrations and debates and I raise the critical question, ‘When will there be systemic reform?’ Reform such that, citizens are not in fear of their lives when stopped and questioned by the police.” When Judge Glenda Hatchett started the first grade, Brown v. Board of Education had just struck down Jim Crow laws. She grew up in a time when the contemporary civil rights movement gained immense momentum. In our February 2011 cover story, written by Sean Black, Hatchett reflected on her parents’ support: “My parents believed that I, a little colored girl from Georgia, could be an architect, a lawyer, an engineer, a doctor. Our parents’ mantra for me and my two younger brothers was that we could be anything in the world we wanted to be.” This understanding of social justice Judge Hatchett at DIVAS Simply enriched her advocacy for other vulnerable communities and individuals, such as children and Singing! in 2010 those living with HIV/AIDS.

A&U • AUGUST 2016

photo of Judge Hatchett by Sean Black; protest photo courtesy Health GAP

On July 18, to coincide with the International AIDS Conference in Durban, South Africa, over 8,000 activists marched to raise awareness about the need for expanded HIV treatment access, calling on greater financial and political commitments from the global community to make “Treatment for All” more than a slogan. The advocates lauded the progress made so far, but pointed out that 20 million individuals living with HIV/AIDS (out of a total estimate of 36.7 million) still need lifesaving antiretroviral medications. Currently, more than 1 million individuals die every year from AIDS-related causes. Organized by Treatment Action Campaign, Health GAP (Global Access Project), and Section 27, and endorsed by over 120 organizations, the activists’ call to action included five demands: 1. All people living with HIV need access to quality, comprehensive HIV treatment now! 2. No healthcare without healthcare workers and a functional public healthcare system! 3. No more patents on medicines! 4. No more discrimination and criminalization of key populations! 5. Increase funding for the global AIDS response! Asia Russell, Executive Director of the Health Global Access Project, stated: “At a moment [when] HIV treatment science has shown us the way forward, our governments are engaged in a cynical game of promising to end the AIDS crisis and then refusing to put up the funds to do so. With $7 billion more a year we could be moving toward ensuring all people living with HIV have access to treatment, but instead they are trying to convince us we should choose—which people, which geography, which age or gender or sexuality—because there is not enough money. We reject these false dichotomies, the wealthiest countries in the world could fill this gap in a heartbeat—we are here to demand that they find the courage and common sense to do so.” Activists presented memorandums of demands to South African Deputy President Cyril Ramaphosa and U.S. Ambassador-at-Large Deborah Birx, among others. For more information, log on to: http://tac.org.za/.

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by Ruby Comer

iro is my hero! Hiro is a fourteen-year-old electronics prodigy who demonstrates his gift in the extravagant Oscar-worthy animated Disney film, Big Hero 6. Based on a Marvel comic book, the lifelike action adventure dramedy is a rollercoaster ride of a story. Hiro also has an older brother, Tadashi (their parents are deceased), who protects him and inspires him. Though they have a typical put-down razz-’em relationship, they’re extremely close. It’s heartfelt to witness their bond. Ryan Potter, who entrancingly voices Hiro, is no stranger to the brotherly relationship, though he acquired his brother in a slightly different way. He received a brother through the Big Brothers Big Sisters Association of America (BBBS). In my twenties, I was a Big Sis to a girl, whose name was Rhoda, who lived in the hills of Alhambra, just east of L.A. We had some fun times together, hiking, Disneyland, skateboarding (yes, if you can imagine this ol’ non-athletic redhead on one of these), and even bungee jumping! At fifteen, Ryan entered show business playing the lead, as Mike Fukanage in Nickelodeon’s Supah Ninjas. George Takei [A&U, December 2013] played Mike’s grandfather. Ryan’s film credits include

Senior Project and Underdog Kids. He’s currently in New York filming the mystery, Sidewalk Stories. At his young age, Ryan is already a humanitarian. Gee, I didn’t get out of my ego until I was, well, er, I don’t think I have yet, at my tender age of… well, we won’t go there. During his high school years he was homeschooled. His hobbies are painting and fashion (designing clothes)— spawning an Internet show called, RStyles. Ryan is also an amateur photographer and often fuses his hobbies to create art. The actor is skilled in martial arts and the Star Wars series are his all time favorite films. Ryan devotes his extra energy to youth mentorship, and at nearly twenty-one is a role model. In 2011, he founded Toy Box of Hope, which holds an annual holiday collection drive for children in homeless shelters and transitional living facilities in the Los Angeles area, collecting things like bed sheets, jackets, and toys. We hook up at the new Broad (pronounced with a long “o” like “bro”) Contemporary Art Museum in downtown L.A. The opulent space-age architecture houses many works, including some by Warhol, Basquiat, Rauschenberg, and Koons. After a tour, we settle on the plush lawn in the museum park, next to a full-branched olive tree. While my back leans against the tree, Ryan at BBBS of San Diego County 2015 Annual Gala, where he emceed

Ryan is in lotus position sitting across from me. Ruby Comer: How can you not love L.A.?! Besides stunning weather, it offers so much. [Ryan eagerly nods.] Though, disappointingly, L.A. has skyrocketed in prices, so much so that there’s a mass exodus from the City of Angels. But, I’ll save that for another time. Ryan, have you lost anyone to AIDS? Ryan Potter: No, I haven’t. Good, let’s keep it that way. It’s a growing epidemic. I’m often reminded of the truly serious nature of this disease by social media, film, and all of the visual content out there. When I began to look at the numbers, I was startled. [He shakes his head tirelessly, flicking a stand of hair that has fallen on his forehead back in place.] How did you hear about the epidemic? I had heard the words “HIV” and A&U • AUGUST 2016

Ruby illustration by Davidd Batalon; photo of gala courtesy BBBS San Diego; portrait courtesy Piccolo PR

Ryan Potter

James picked me up from my home to go to the batting cages—or so I thought. Suddenly, I realized that we were going in the wrong direction. I was so excited, making guess after guess, but he wouldn’t tell me. I didn’t Ryan and George Takei know what he was up to until we “AIDS” when I was younger, but it wasn’t arrived at El Torito Restaurant. I walked until middle school health class that I in to find forty people, my family and learned exactly what it was. To be honest, friends! It was so special and James I didn’t have a good understanding of it really made it all come together. until I saw the film, Dallas Buyers Club.

Talk about stress! You’ve had some stress in your short life…. You mean bullied? [I nod.] Well, I think nearly everyone has been bullied— physically or emotionally—at some point in their lives. For me it was during middle school. I was mentally and emotionally drained. My “best friends” turned on me and bullied me. [He pauses, strumming his nimble fingers over the thick luscious grass.] The more I let the pain and memories go and focused on my future, the stronger I became. It’s not easy, but it’s a wonderful feeling when you finally get there. You’ve conquered the art of forgiveness! Bravo, Ryan. I think it’s great that someone your age is not only interested in causes, but has founded an organization, too. Tell me, where does that drive come from? My motivation comes from the empathy I have for people. I don’t want kids to go without guidance and a proper role model. BBBS changed my life. I hope that kids all around the world who need a mentor can have one like I had in James. What calls to mind a favorite outing that you had with James, your Big Brother? [Fired up, Ryan instantly responds.] My eleventh birthday surprise party!

Extraordinary! You’ve got a fan there, boy. Did James clue you in on sex? Yeh, he had the obligatory ‘birds and the bees’ talk with me. He made sure I knew how to be a responsible sexually active adult.

In your opinion, what’s the most widely used social media preference among your age group? Hmmm…it really varies. I would like to believe Instagram, because that’s where I do my networking, but I’m seeing a huge switch to Snapchat. You can get personal with your favorite celebrity and athlete on there and the user—or fan—can keep up to date with their favorite people. It’s pretty remarkable actually. You’re right about all this, but, for me, Twitter, Snapchat, Moneygram, or whatever that’s called [Ryan politely corrects me, Instagram], I just can’t get the hang of it all. [He chuckles and continues with his suggestion.] With the public’s ever-shortening attention span, visual content is so effective, Ruby. It creates visual reminders and passes on safety tips and health warnings that are incredibly useful.

Bravo to your BB. Besides James, who else do you look up to? George Takei. His work ethic is unparalleled and he’s one of the most funny, humble, smart, intellectual people I have ever met in my entire life. I always seek him out for guidance. He’s the man! I had the pleasure of working with George as well, at an APLA [AIDS Project Los Angeles] event, I believe, and your assessment is right-on. He’s definitely a sweetie and a tireless advocate for human rights. Why did you create Toy Box of Hope? It was painful to see children on the streets with nothing. It’s amazing to see what a teddy bear or a board game can do for a child. Being that your generation has high stats in rates of HIV infection, how do you think is the best way to reach them so that they hear the message? [He replies simply and precisely.] Social…media…campaigns. The amount of time the average teenager spends on social media is insane and those sponsored

Education is key. [A noisy plane passes overhead. Ryan’s golden-hued peepers dart upward then he swiftly looks back at me and concludes] I genuinely hope that there is more HIV content hitting media to reach my generation.... Follow Ryan Potter on Instagram @ryankpotter and Twitter @RyankPotter. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her A&U • AUGUST 2016

photo courtesy R. Potter

Then I understood the extent of the epidemic and the physical and emotional toll it takes on one’s body and mind.

apps are always popping up whether you want to see them or not. TV advertising would be valuable as well, but for my generation social media is key!

SOMETIMES, OUR HIGEST HEIGHTS HAPPEN

LONG BEFORE TAKEOFF. Proud to partner with the Elizabeth Taylor AIDS Foundation.

JULY 2016 â&#x20AC;¢ A&U

Justin— Hope you’re doing well! Got a question you might know the answer to....So I’m negative and on Truvada as PrEP, but my boyfriend finally got on what I thought his doctor prescribed him, Truvada, but instead was Emtriva. Now I’ve done my homework and before I get out of sorts: Is Emtriva equal or effectively the same as Truvada? Just thought you might know more than me, who specializes in sales and not health. Any help would be appreciated. —JCrew First, let me commend you on taking control of your own health. By being on Truvada you are protecting yourself, as you know. Many people do not want to go on pre-exposure prophylaxis (PrEP) because they prefer condoms only. This certainly has been a subject of contention in the HIV activist community. Okay, let us address the issue. First, let me explain that Emtriva is utilized with other HIV medications to help suppress HIV infection in the body. It allows your immune system to work better while being infected with HIV. Emtriva also lowers the chances of an individual who is infected with HIV of getting opportunistic infections, such as a cancer-causing infection. It also reduces the risk of HIV transmis-

sion. Truvada is made up of two medications, tenofovir (Viread) and emtricitabine (Emtriva). Honestly, I think you really need to talk to your boyfriend. Open communication is where you are going to find your answer. If you are not sure about why he is taking the medication you need to ask him. I’m not a doctor, but maybe you should consult one so that you know the facts. I do know that being honest allows for couples to be able to share information that they may have been apprehensive to share if there is no open communication. I would suggest sitting down with him and making sure that you do not sound judgmental when asking about the medication. I always ask when is the last time a person has had their last HIV test because I personally don’t want to run the risk of transmitting the virus to them. The second issue would be to question why the doctor didn’t prescribe him Truvada. There could be a very good reason why his doctor paired Emtriva with something other than Viread. But I raise this issue because a lot of doctors will prescribe the same preventative or HIV medications to the couple in a relationship. Sometimes being on the same meds can also be a lot easier for the couple. Partner A and Partner B are in a relationship with each other; Partner A and B are both on Truvada. If Partner A runs out of Truvada, he can always ask Partner

B if he can use his medication until his prescription of Truvada comes in. I’m not saying this is the right way to do things, but I know it does happen in real life. One would have to be very cautious to make using another person’s prescription a standard practice. Importantly, one should never just prescribe oneself Truvada as PrEP. Consult a doctor before just taking PrEP out of the blue. The same goes for HIV medications. If Partner A is taking Complera and Partner B is taking Triumeq they should not mix up their drugs because Complera and Triumeq have their differences, even though both of the medications are dosed at one-pill-a-day to suppress HIV. Consult your doctor before switching medication with your partner. The reason why I advise not to do this is because everyone’s body handles different HIV medications differently. Meaning, I’m on Complera because I consulted my doctor and my body has been doing well with it from the very beginning. If I lost my pills or ran out of Complera I wouldn’t want to try to take another HIV medication to compensate. The reason why is because I don’t know how my body will react to that certain medication. My advice is not to tell you what to do, but to give you options on what to do or tell you what I would do. I leave it in your hands to make the right decision for yourself. Do a little bit more research. ◊

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 jsmithco98@hotmail.com.

A&U • AUGUST 2016

“

Don’t think about it. Just do it. Protect yourself and make HIV testing part of your routine like I do.

”

— Jaime Pressly, Actress

I’M

DOING IT

Testing for HIV

#DoingIt Testing is Fast, Free, and Confidential cdc.gov/DoingIt

lifeguide

Divided We Fall

esterday, I was completely taken aback and feeling discouraged and mournful for several reasons. It was the one-month anniversary of the Pulse Nightclub shooting for starters, a time for reflection and mourning for our community as well as many right-minded fellow Americans. Meanwhile in the United States Congress, in a country built on the sacred concept of liberty and justice for all, a debate was going on. The majority of congressional members were seriously considering, on this sad day, legalizing discrimination against our LGBT community and others who don’t fit their narrow and bigoted definition of family. Hearings were being held by The House Oversight and Government Reform Committee on FADA (The First Amendment Defense Act). This dangerous bill would allow any taxpayer-funded organization—be it a business, a non-profit, an educational institution, to deny goods, services, or benefits to anyone in a same-sex marriage or relationship. Anyone in any relationship but what they deem to be a traditional, Christian marriage could be affected. Unmarried heterosexual partners and single mothers are also affected. Any such institution could turn away any LGBT person under the bill, in fact; it’s that far-reaching. Benefits could be denied, jobs lost with no recourse, goods and services refused. It hits hardest the many states that don’t have laws already protecting their citizens. It sets a dangerous legal precedent in those states which do. Using the now tired and unfounded excuse, “religious freedom,” they were dancing on the graves of forty-nine victims taken violently and too soon, also in the name of faith and religion. This bill, to put it simply, undermines our basic rights as U.S. citizens and is driven, not by any need to “protect” freedom of religion, but by fear, hate, bigotry, and ignorance. Then, as icing on that proverbial cake, my best friend forwards me an article. Grindr, the popular gay social app, is polling its members. They are actively promoting a feature on their site which will allow its users to “filter” potential interactions by HIV status. Many members are outraged at this blatant discrimination. But based on the blatant bias and intolerance some members of

John Francis Leonard

let’s stop discrimination in our own communities

our gay male community extend to those who are positive, I’m sure many would welcome such a discriminatory option. Now one might wonder how I arrive at this parallel, but it’s simple. We cannot demand tolerance and understanding from the right wing of our country if we cannot, will not, extend that basic human instinct to one another. We are lost unless we do so. Simple research, just a little reading, will expose the facts. An open and tolerant mind will go a long way as well. Sex with an HIV-positive person, adhering to current treatment and undetectable, is some of the safest sex one can have. When you are undetectable, you aren’t infectious. Add the current prevention model, PrEP for the negative partner, and you’re statistically even safer. Hell, add a condom for anal sex and you’re golden. If you’re living in some fear of getting involved romantically with an HIV-positive person in case they might drop dead at any moment, get over it. The HIV-positive are living long and productive lives. Yes, it can make the vagaries of aging a bit more daunting, but so do a host of other ancillary health conditions. We’re all guilty of it, especially as gay men. We are constantly on the lookout for “the next best thing.” It could literally be right around the corner, we tell ourselves. So, we place stringent expectations on each other. We must have washboard abs, the perfect face, and an eight-inch cock. Anyone who doesn’t meet our unrealistic expectations simply need not apply. We already filter out others based on race and ethnicity (I’m speaking of Grindr again). If not that, we have armlong lists on the apps of what we don’t want, what doesn’t turn us on. Personal preference is one thing but why are we so adamant about telling other people what is unacceptable about themselves? Are we missing the great guy right in front of us because we’re so busy looking for something that might or might not be marginally better? We all have our fantasies, things that turn us on. What happened to a simple “no thank you” to someone we don’t find

attractive? Or, if we need to spell it out for the more persistent, “sorry, you seem like a nice guy, but I’m just not interested.” Where did humanity and basic good manners go? All this sero-sorting just seems to be the last straw. Recently, I was on an app looking for some company. Now, for me, it’s sometimes as much about just connecting with another guy for a little while as much as it is about getting off. I was chatting with a local guy about hooking up. He was into some mutual masturbation and oral sex. Nothing could be safer, right? Still, as always, I felt it was morally correct to let him know about my status. Silence. When he did get around to replying it was in the negative. He just couldn’t risk it. Now admittedly, I’ve grown weary of having to educate every potential sex partner on exactly what safe sex entails. Instead, I reacted with some of the intolerance I’ve been talking about. Feeling hurt, I informed him that he wasn’t really that hot to begin with and that I could do much better. It was not my proudest moment. At least he, like many in my small community, could be forgiven for not being in possession of the simple facts. What was my excuse for being unkind? And I want to say that all of us, not just the gay male community, have felt the stigma directed towards those who are HIV-positive. I can’t imagine explaining the ins and outs of HIV to your average heterosexual. So we all need to do it. We need to extend to each other the same tolerance and love that we demand from our country as a whole. We are simply lost without it. I fear, in my heart, that it will not be forthcoming until we do and it makes me sad. All the marching, all the protest, all the debate, all the progressive legislation in the world will be for naught. John Francis Leonard writes A&U’s monthly Bright Lights, Small City column. A&U • AUGUST 2016

illustration by Timothy J. Haines

Say Their Names

from slavery to hiv to death by police, the normalization of black death needs to stop

illustration by Timothy J. Haines

hilando Castile. Say his name. Alton Sterling. Say his name. Renisha McBride. Say her name. India Clarke. Say her name. (Insert name here). Say their name. This has become the growing trend America over the past three years as racial tensions reach an all-time high between police and the communities they serve. As the hashtags and buried bodies continue to grow, black people are far too often reminded of our pained history in this country. While fighting the epidemic of “guilty of being black,” we are also still the most marginalized group in the HIV epidemic. To some there is no correlation, but the devaluation of the black body crosses multiple sections of social justice and one must see that they both go hand in hand with the erasure of the black community. The injustice seen in America surrounding the murders of black lives has reached a boiling point like nothing we have ever seen. Since Independence Day 2016, we have seen multiple black men killed at the hands of police, multiple police officers killed at the hands of a black man and hundreds of protestors marching and being arrested. For black people, this pathology of hate in America is nothing new and our mere existence in this country is in direct correlation with the continued negative treatment of the black body. We didn’t book a Carnival cruise trip here. Our bodies have had a dollar value since the first slave slip arrived in the Americas. For us, we were bought and sold with a different valuation on each of our heads. Sometimes being sold by “the dozens” as if we were a carton of eggs for mass consumption. We were insured as property, written into the laws of this land as 3/5th of a person, and never intended to be a part of the “we” or “people” in “We the People.” For years we have fought to be known as a whole person, yet every time we take two steps forward, it seems that we take five steps back and become marginalized in some AUGUST 2016 • A&U

other area. Through the 1800s we fought hard. Slave rebellions, activists, and abolitionists helped us fight for the right to be free. Unfortunately, freedom came at a cost. We became whole people to only have other rights stripped down and taken away. The pathology of mistreatment from slavery carried directly over into healthcare and we have seen epidemics attack our community in stark contrast to other communities. Tuskegee would be the most known study that directly correlates with the treatment of blacks and health. This syphilis experiment turned tragic, disregarded black bodies as nothing more than lab rats and pawns for majority consumption. Our bodies used as test experiments created a fear that we still face in the community today. Black folks fear the doctor. We have never had a great relationship with those who are taking oaths to “protect and serve” or “first do no harm” as we seem to always be left out of that list. The HIV epidemic has been no different. When AIDS became the biggest issue in the world, help went to the majority. The black community became decimated and literally had to fight for the right to live and have the services provided to others. From this, organizations like the Black AIDS Institute, Us Helping Us, and so many more became pillars of large demographics that helped galvanize the community to let the world know that black HIV-positive lives mattered and deserved equity and equality in treatment and healthcare. We as HIV-positive people were written off as death sentences, shunned from our own community and ignored by the

majority community at large. This pathology of the reduction in value of the black body has transpired into every aspect of the black lived experience. The correlation between safety on a social level vs. a health level are almost two dogs in the same fight. Healthcare, police brutality, systems of oppression, modern day slavery, are all social justice issues that diminish the civil rights of black people. We have been told that we are “more prone to violence,” “less educated,” and “more likely to be incarcerated” and, for that, our bodies are not deemed worthy of being saved, especially when we are adversely effected in the spectrum of health. History has shown that black people are brilliant, resilient, innovators, who have been fighting for the right to be treated as the 5/5ths that was given to us so long ago. Whether it be slavery, healthcare, or police brutality, we are tired as a people, but we will never stop fighting for our right to be free. We refuse to let the world devalue our bodies. George M. Johnson is an HIV advocate who works for Us Helping Us, People into Living. Inc., 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.

In From the Cold

love animals. In particular, I love dogs. Cats, however, not so much. A man with whom I lived in my early days in NYC had a lot of Persians in too small of an apartment. Through no fault of the cats, the one-bedroom was an absolute mess that was impossible to keep on top of. I remember neither that man nor the cats with much fondness. Being something of a stray that the man had taken in myself, I was in no position to complain. Obligation can either breed great fondness or much contempt. Recently, a stray cat started hanging around the back entrance to my apartment building. It’s happened before; our complex itself has more than a few cat owners and is surrounded by a large development of homes. I took little notice of other strays, always assuming that they would find their way home. This time, however, I did take notice. She was a chatty little thing and would follow me and neighbors to the door. I don’t know what about her fascinated me, but something did. Soon enough I had her coming to me and letting me scratch her ears and rub her head. Then, she would run away as quickly as she came. It was obvious to me that she wasn’t feral; she had belonged to someone rather recently. One morning, I sat at my table writing. It was five a.m.; I get up very early to work, run, or just putter around the house, and I had my window open to the chilly, late April air. I live on the lower floor and my windows are at ground level. There, staring at me with her big green eyes and crying was the cat. My heart was breaking. All I could think about was the fact that she might be hungry and cold. Before I could come up with a plan, she was gone as quickly as she had appeared. That same evening, I was texting with my boyfriend, Jeremy, who lives in Canada and is also an animal lover. She showed up again, crying and staring at me with her big sad eyes. We both decided that the least I had to do was try and feed her, but there was nothing appropriate in the house. Jeremy was also of the opinion that I should bring her indoors, just for a little while, he said. I was not quite sold on that idea. I ran to the store to buy a few cans of food and even stop to price litter and pans, just

in case. You can see where this is leading. I returned home and put out food and water for her. She wouldn’t eat, so by the next morning my decision was made. I had to bring her in. Just for a little while anyway… Well, she’s still with me and I can’t imagine what I ever did without Pumpkin. I’ve done a lot of thinking about why I was so ready for a pet and I’ve come to some conclusions. Whether I like to admit it or not, I, like many others with HIV and AIDS, can feel isolated. Only some people know I am positive, close friends, family and others. It’s not a secret necessarily but nor is it something I share with everyone. I learned the hard way at work that if you share your serostatus with one person you risk them sharing it with someone else, and often for the wrong reasons. Dating again, especially in a smaller city like mine, has also provided some hard knocks. I’ve faced rejection and judgment from those who have no idea how HIV is actually transmitted. Even family has been judgmental. Recently, my mom was bragging to my stepsister about my writing. When I explained what this magazine was about she clammed right up. This is a young woman who never is quiet and loves to pepper people with questions. She is also a registered nurse and often brags about how “adorable” her gay friends are. She speaks of them as if they are so many poodles who entertain her and boost her ego. Personally, I’d rather be vilified than patronized. Ignorance is everywhere and

can often leave us feeling bruised and battered as well as alone. Pets love us unconditionally. They are always there, never judging and always grateful for the care we give them. Pumpkin has been like a balm to me. Nothing is better than coming home to a house that is no longer empty. I didn’t think I was lonely but my closest friends are far away now and I’m realizing at forty-seven that people come in and out of your life for a reason. There’s something so reassuring about a loving pet as a companion. If you had told me not long ago that I would be a cat person, I would have laughed. If you had told me I was feeling isolated or lonely, I would have laughed harder still. 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 and his currently at work on his first novel, Fools Rush In. Follow him on Twitter @JohnFrancisleo2. A&U • AUGUST 2016

photo courtesy J.F. Leonard

how a stray cat changed the game

Bringing hearts together since 1998

P zMatch.c m

he best practice of HIV prevention and care involves more than programming that targets reducing new HIV infections and achieving viral suppression; it should prioritize creating health equity for all, including Long-Term Survivors (LTS). Health equity entails everyone having the opportunity to achieve their optimal level of health. We LTS have experiences unique to long-term HIV survival, including extensive antiretroviral use and long-term side effects. Many LTS have served as our own advocates since embarking upon a journey that continues to bring us into new and uncharted territories. As a twenty-two-year survivor living, and even thriving, with HIV/AIDS, my newest path on this journey involves cardiovascular health. Early signs that something might be brewing began in the summer of 2014 with episodes of shortness of breath and longer recovery periods. Being proactive about my health, and, more importantly, being an expert on me, I reached out to my primary care provider (PCP). Not having any additional acute signs and symptoms, my PCP ordered a baseline EKG and some lab work, all of which came back normal. Knowing my own body and how I usually feel, and having a family history of cardiovascular disease (I lost my dad to congestive heart failure when he was fifty-three), I began advocating for more in-depth cardiovascular health screening. Over the next few months, I went through a battery of diagnostic tests and interventions, including various stress tests, an initial angioplasty, and resulting stent placement. Findings indicated cardiomyopathy (literally “heart muscle disease”), the worsening of the heart muscle’s ability to contract, which can lead to heart failure. My initial treatment plan included a combination of cardiac medications, cardiac rehabilitation, lifestyle changes and early discussion of the potential need for an implantable cardioverter defibrillator (ICD), a device implanted inside the body which is capable of correcting most life-threatening cardiac arrhythmias. After three months, repeat tests indicated no significant change in heart function-

And the Beat Goes On a heart-to-heart about hiv, cardiovascular health & self-advocacy

ing. While the good news was that my heart functioning was stable, it was still low. I was now in need of a heart failure specialist. In November 2014, I made a decision to relocate to Boston, Massachusetts, in large part due to my own need for the more intensive medical care and the support services available to people living with HIV/AIDS, including peer support groups. I wanted to find a provider who was an expert in cardiovascular health and also experienced with HIV/AIDS. I became an established patient at the Institute For Heart, Vascular and Stroke Care at Massachusetts General Hospital and next steps included a cardiovascular health reassessment and review of my existing treatment plan. I had the first of two cardiac MRIs (considered to be the gold standard for noninvasive imaging in coronary heart disease). Again, findings indicated no significant change in heart functioning. My cardiac medications were again adjusted. As with my HIV medications, I was and am 100-percent adherent. Disappointingly, there was no improvement. Additional tests ruled out genetics and thyroid issues. A second angioplasty ruled out additional coronary blockages. These results now confirmed a diagnosis of HIV-associated cardiomyopathy. My providers were baffled because, despite some of my test results, I had no limitation in ordinary physical activity. At this time my cardiologist, also a heart failure specialist, very strongly recommended and encouraged me to see an EF specialist “just to talk.” EF, or ejection fraction, is the fraction of outbound blood pumped from the heart with each heartbeat. Upon initial consult with the EF specialist in January 2016, I was found to be a borderline candidate for an ICD. I again self-advocated for more advanced and definitive cardiovascular risk screening. This led to me wearing an at-home continuous cardiac monitor for fourteen days. Red flag!

Findings included an irregular arrhythmia. With this new knowledge, I firmly advocated for even more advanced screening and testing. My logic was that if I needed an ICD I would be foolish not to take advantage of the technology now available to me, which hadn’t existed for my dad in 1986. On March 9, 2016, I was admitted to Massachusetts General Hospital for an electrophysiology (EP) study and discharged the next day with an ICD. My PCP, HIV-provider, and others said post-procedurally, “I did not see that coming.” The takeaway, a heightened awareness of the importance of screening and treating long-term survivors for potential comorbidities and the strengthening of peer support networks. It was my persistent self-advocacy with my healthcare team that eventually led to the diagnosis of HIV-associated cardiomyopathy, and the continued support of my local long-term survivor support group and others that empowers me to successfully navigate through my recovery from HIV-related cardiovascular health challenges. Through a combination of optimal medical treatment, educational interventions and tailored psychosocial care, I am working towards acceptance of my ICD. Rob Quinn is a passionate, openly gay, HIV-positive advocate and educator. During his twenty-twoyear journey as a long-term survivor not only living with HIV/AIDS but also thriving, he has evolved from being an unheard voice to a voice for the unheard. Through local, statewide and national advocacy, education, outreach, and online platforms, he continues to improve the quality of life of those in the HIV community, including his own, by raising awareness, reducing HIV-related stigma, and working towards a future free of HIV/AIDS. Visit his website at: www.OpenlyPOZ.com. A&U • AUGUST 2016

illustration by Timothy J. Haines

bybyHank Trout Rob Quinn

Black Lives Matter finding a time and place to act up

illustration by Timothy J. Haines

“B

lack Lives Matter.” This is probably neither the time nor the place (nor the magazine) to be painting my face black with engine oil so that my features won’t be picked up by camera, covering my body in jean and leather-torn hoodies and saggy pants (the uniform of the oppressed), and marching down the highway with hand-made signs filled with the names of dead Black kids killed by police officers in the street. This is not the time to speak my rage, pain, and disappointment into song, like some Southern Baptist dirge, but at the moment there is nothing else I want to say. “Black Lives Matter!” These are the only three words that mean anything to me. It is my constrained bitter-lipped refrain, and it’s the only thing that I think this country needs to hear. I know that this is an HIV and arts magazine and I should be saying something about my T cells and how to stay emotionally and intellectually healthy, but as a Black man living in America in this social climate, everything I do is now tied to the movement. They say that the Black Lives movement is loud, and confrontational, and dangerous. They say that though our children our being slaughtered one by one, and their dead discarded bodies uploaded onto the Internet for all to see…they say that the Black Lives movement should be polite and docile, and willing to share a meal of meat and bread with its enemies. They say that we can get more with honey than with vinegar. They say that in order to bring about systemic change a minority group must work from within the system and with logic, intellect, and “goodness” win the hearts of the majority. This is why intersectionalty is important. This is why the struggles of one must become the struggle of everyone. This is why knowing your shared histories is important. We must learn from one another. And this is what I know. When the government was letting gay men die by the hundreds, when AIDS was a word that the president refused to AUGUST 2016 • A&U

utter, when the dead bodies of our queer brothers were being thrown in hospital dumpsters and piled upon the steps of the Capitol building, instead of working with their oppressors, these once meek and passive gay men began throwing buckets of infected blood at their enemies! They did not use sugar to help bring about change. They fought back, they spoke out, and they acted up! The ACT UP movement of the eighties was just as scary, just as radical, just as unwilling to play nice with those allowing them to die. And they won. WE WON! It birthed the most comprehensive change in the healthcare and medication pipeline ever! The people changed the system. We can change the system. Black Lives Matter just as much as queer bodies matter—just as much as gay white male lives matter, because all lives matter!! And if All Lives Matter then Black Lives Matter too! Thirty years after ACT UP I now have pills of all shapes and sizes to control my HIV. I will not die of a complication from AIDS (knock on wood), but as a Black man living in this country, every time I leave my apartment there is a very real risk that I will not return home. Racism is the deadliest disease that I struggle with today. The power systems of oppression, and white supremacy and rampant ambivalence to the plight of black bodies is the plague now killing my brothers and sisters. And it is all I can think about: Black Lives Matter. Black Lives Matter! Black Lives Matter!!

There are marches all over the country, police in riot gear are charging into private homes in Louisiana determined to silence the revolution that is on its way, but it is time for the system of racism to stop killing us. And I know that many do not understand the movement; they do not believe that we should be so loud, so aggressive, and so unapologetic. But I hope that even if you do not understand, you do not try to stop us. Because this is not just a racial thing…it is not something that “Black people do.” This is universal! This is about life and death and innocent bodies littering the streets. And like the gays did in the eighties when there were videos of our brothers wasting away and our carcasses being left for the flies in the summer sun, it is now our time to ACT UP!! It’s our time to be radical, and brave, and dangerous. And this is me reaching out to that little bit of substance that connects us all, that glowing bit of string that weaves all of our souls together. And though this is not the appropriate time, nor place, (nor magazine), I hope that you join me in screaming BLACK LIVES MATTER—because if all lives matter, then certainly Black Lives Matter, too. Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Nonsense can be found at www.justwords.tumblr.com.

Veils & Visibility In Their New Photography Show, Lester Blum and Vladimir Rios Help Shed Light on Individuals Living with HIV & Others

by Alina Oswald

nly days after the shooting at the Pulse club in Orlando, I find myself at the Lesbian, Gay, Bisexual and Transgender Center in Manhattan to meet with photographer Lester Blum and talk about his new show, “Invisible.” I arrive at the Center a few minutes early. Looking around, I notice a police van parked right in front of the Center, flanked by two police officers, who were dressed in what looked like full body armor. I point that out to Lester Blum, as he arrives a moment later, and we walk by the officers and greet them. They greet us back, and even smile at us. We conclude that they’re there for protection, to keep an eye on things, as they say. From the look on Blum’s face, it seems to me that he has much more to say about Orlando, and we hurry inside to talk about that, as seen through the prism of his new show, and much more. While many of us are familiar with the work of Lester Blum and Vladimir Rios through shows like “Warrior of Hope” and “I Still Remember” [A&U, November 2015], with “Invisible” we have the chance to rediscover these amazing artists, and to be introduced to a new facet of their work. “Invisible” is a multilayered documentary that takes on the topic of invisibility in our society. (Opening night is August 13, at the Pride Center in Staten Island, which is also planning several educational events around the event.) When I spoke with Vladimir Rios later, I learned that the idea for the show started with a simple conversation Rios had had with a man in a wheelchair on the beach at Fire Island. At the time Blum and Rios were still working on the “I Still Remember” photography narrative. The man, Bruce Paul, thanked them for taking a moment

to chat with him, commenting that usually people didn’t acknowledge him, let alone talk to him, and thus making him feel invisible. And so, Rios decided to make his story visible. The man in the wheelchair ended up being the first (out of a group of up to twenty people) to be interviewed for the new project. “He planted the seed in my head about doing a project about people who are or feel invisible in our society,” Rios emphasizes later, when I catch up with him. “Of course, I took the opportunity to learn more about him,” he adds, “and immediately felt that I wanted to present this concept [of invisibility] in an artistic manner,” to offer not only a way to learn about these individuals, but also to learn how to make a difference in their lives. “Having been a social worker for many years,” Rios adds, “I was aware of individuals who suffered from [feeling invisible]. The encounter with Bruce brought the subject, which we tend to ignore, back to the surface. I was very curious to learn how someone who felt invisible actually felt. “The initial thought about this project was strictly to present people with obvious physical challenges and disabilities. When Lester [Blum] and I actually began [working on] the project, we quickly learned about the variety of causes that were not necessarily [related to] physical disabilities.” While working on the project, Blum and Rios have encountered many other facets of invisibility, either because of an HIV status or being considered “different” in society—being born with HIV; bullied as a child or adult because of being gay, small in size, not athletic or overweight to name only a few; being sexually A&U • AUGUST 2016

Lifting The Veil, 2016, Ultrachrome archival print, 12 by 18 inches

AUGUST 2016 â&#x20AC;¢ A&U

Rob 5, 2016, Ultrachrome archival print, 15 by 10 inches

abused; aging; living with mental illness; and many others. And they noticed that all stories had a common thread—they were all related to feeling damaged or not belonging, or related to anguish, depression, and even suicidal tendencies. “The project is different from others,” Blum tells me. “[While] the others were primarily fictionalized stories, based on actual things—‘I Still Remember’ was a combination of so many people’s lives from that era [the beginning of the AIDS pandemic]—‘Invisible’ is a multidimensional documentary combining still photography [portraits], written testimonials, and documentary style video. It is about actual people’s lives, their feelings and emotions.” Blum was in charge of the photography and videography, and Rios, the creator of “Invisible,” interviewed those who wanted to share their stories for the show. Invisibility comes in all shapes and forms. Some are more subtle than others. Hence, individuals interviewed for the show cross all walks of life. While some find hope again and become visible in society, others choose to become invisible as a defense mechanism, hence they project to the world only a facet of themselves accepted by society. “The other side to that is Orlando,” Blum comments, explaining that those killed in Orlando might become invisible because they’re not alive anymore. “We have to give them a voice,” he adds, emphasizing the importance of keeping them visible, remembering them. “Since the tragedy which occurred in Orlando,” he adds, “we [Blum and Rios] feel even stronger about the message of the project and the educational aspect that the project entails. Those who perished no longer have a voice. ‘Invisible’ [marched] in NYC’s Gay Pride Parade to

deep-seated feelings of being invisible. The artists also found out that everybody deals with the issue of invisibility in different ways. Although each story is unique and relevant, some stand out more than others. So is the story of Raymond Scott VanAnden, a man living with HIV who has been abused in multiple ways during the time of his last relationship. When interviewed, Scott says, “Sometimes the feeling of being invisible keeps us safe from life’s issues of abuse or neglect or disease…it can be the comfort from life’s issues.” Rios says, “What makes his story remarkable, is that he turned his life around and now works as a counselor at an HIV center, helping others.” There is also the story of Andi Poland, who lost two sons to suicide within a short two-year time period. “After her loss,” Rios says, “this amazing woman has chosen not only to help herself, but also [help] others by learning about mental illness and suicide. She hopes that society becomes educated about the subject, so that no one else will have to suffer [losing] a loved one to suicide.” But not all “Invisible” stories are sad stories; quite the contrary. Some offer hope and the possibility of becoming visible again. Some highlight that very dim, but present silver lining or the light at the end of the dark tunnel of invisibility, while others help us reach inside ourselves giving us a chance to touch base with our own humanity. For example, artist and activist Robert

emphasize that we, as a community, are no longer invisible.” Rios also adds, “In today’s world, being gay [still makes] many of us invisible in society. Many of us choose to stay invisible to be safe. For many, the attack in Orlando re-emphasized the necessity of staying invisible, [while giving others the courage to become visible]. While not affected directly by the recent Orlando massacre, everyone in the LGBT community and throughout the world was greatly affected by the tragic event. What’s most relevant is that the entire world basically unified in showing support, compassion and love for the victims, families, and friends. We cannot afford to let anyone feel invisible. We are all part of the same world. In memory of the Orlando massacre victims, I refuse to ever be invisible.” What both Blum and Rios discovered while working on “Invisible” is that invisibility is multi-layered. At some point in their lives, many individuals have experiCaroline & Beau, 2016, Ultrachrome archival print, 15 by 10 inches enced some

A&U • AUGUST 2016

A&U Gallery Ordonez has become a staple in the New York City scene and beyond for his work behind and in front of the camera. “Sometimes I want to be very honest about who I am, and that scares people,” he says. “My attitude in life is [to] go for your dreams, no matter how many people or what obstacles try to slow you down.” John Chamness comments that being born with HIV, as he was, “is like being born with green eyes, completely out of the child’s control. But it’s a birth into stigma, in the strongest sense. I have spent my life not being able to let people see or know all of me, just part of me.” There are also stories of compassion

help a community in need; nowadays the facility is only partially full); Beau also stops by Terence Cardinal Cooke Health Care Center, Beth Abraham nursing home, in the Bronx, and also the Ronald McDonald House, offering comfort to children living with cancer and their families. “Maybe we can learn something from [dogs like Beau] from what we consider ‘lower species,’” Blum says, showing me a few pictures of Beau, by himself, giving Rios some love or posing for a portrait with Caroline. Art is a powerful tool to tell in particular this kind of stories. “In ‘Invisible,’ the visual and verbal go hand in hand to convey the full story,” Blum comments.

John 4, 2016, Ultrachrome archival print, 10 by 15 inches

HIV is present in each and every one of Scott 3, 2016, Ultrachrome archival print, 10 by 15 inches the visual narratives he created together with Geary 2, 2016, Ultrachrome archival print, 10 by 15 inches Rios. HIV is present not as an isolated issue, but rather as part and unconditional love, such as the story of of a bigger story. And I have to ask why. Caroline Loevner and her dog, Beau. See, “That’s a complex question,” Blum anBeau is a formerly abused, beautiful (inswers, “because the answer is multifacetdeed) Alaskan husky, who now is a therapy ed. I think that the main answer is the fact dog. Beau and Caroline work together, and that HIV is a part of our world today, and they make a great team, helping people, it’s not going away anytime soon. People “bringing hope, love, and compassion to are affected. New people are getting sick, those in need,” Rios explains. “What they whether they’re from the LGBT commudo is something to be admired and pernity or the general population.” He adds, haps, emulated.” “With treatment, people are living longer, Beau is a busy dog. His “steady gigs” but I think that it’s important that people include weekly stopping by Rivington keep being made aware of HIV, AIDS, House (founded by James Capalino in and not falling into the fantasy that taking 1995, at the height of the AIDS crisis, to PrEP is going to be the cure-all. And even AUGUST 2016 • A&U

in the medical community, they’re talking about the same thing. [PrEP] is not the miracle pill.” He believes that this ongoing HIV and AIDS awareness is important as a reminder for older people, for those who were around during the eighties and nineties, but in particular for younger people, so that they can “think about [HIV] and think about what they’re doing.” The “Invisible” feature image, Lifting the Veil, defines the message, the mission of the show itself. “That’s what we want society to do, to lift this veil, so that the various and diverse issues faced by people are no longer invisible, giving others the

opportunity of [more] understanding. We must become more accepting of each other,” Blum says. In speaking with the participants, Blum and Rios realized that by giving those individuals the opportunity of talking about their issues, they also helped these individuals suddenly become visible, at least to a degree. To which, Rios adds, “The goal of ‘Invisible’ is to create a forum where people can have a voice where they can be heard and not hurt. [The show] is an educational piece that will hopefully help people to respect others, accept them for who they are, and welcome them as part of our society.” Find out more about Lester Blum’s photography work by visiting him online at http://lesterblumphotography.com/. Find out more about the “Invisible” show at https://www.facebook.com/ photographyinvisible/

Time & Telling The 4th Annual Christopher Hewitt Awards in Poetry, Fiction & Creative Nonfiction

he 2016 Hewitt Award winners for Poetry, Fiction, and Creative Nonfiction are marked by three strong, distinct voices, but the connective tissue is that they all include introspections on real and potential HIV infection at key moments in the history of the disease. In 2014, the Fiction winner of the second annual Christopher Hewitt Award was a speculative fiction story (“The Cure” by Stephen S. Mills) about a future in which antiretrovirals and red ribbons are relics of a distant past. Two years on, the winner of the fourth annual Hewitt Award for Creative Nonfiction, “Save Tonight,” is a young woman’s story of seeing a bright future ahead that includes bridging the serostatus divide by becoming fully educated about undetectable viral loads, PEP, and PrEP—realities that at one time seemed purely speculative. The title of Benjamin S. Grossberg’s winning poem is a nod to the Greek poet Cavafy’s “Days of 1909, ’10, and ’11.” Poems in the “Days of” vein, whether wistful or elegiac, aim to snatch a fleeting moment and make it tangible, permanent. In Grossberg’s “Days of 1993, ’94, and ’95,” the speaker remembers clinic visits in the days before rapid testing: “You could / match numbers on test tube and slip, return / in two weeks. Wait three months. The lag. More blood….” The poem’s form, the sonnet—with its fourteen lines and obsessive, ritualized rules—simultaneously reinforces and leavens the poem’s subjects: repeat tests, out-of-the-way anonymous testing sites, long window periods, and waiting for results. This is all done so expertly that the emotions take center stage, and one could easily read the poem without realizing it rhymes at all—until the remarkable final couplet. In “Albert’s Prayer,” Marie Esposito’s strong narrative voice and terse, muscular prose—with hints of Dashiell Hammett and Hemingway—keep the reader on a knife’s edge between humor and heartbreak. As the story opens, Albert sits alone in a bar called the Norse-

men where “the maroon vinyl cushions on the oversized barstools were cracked, exposing spongy, yellow guts.” Of Albert’s philandering lover, we learn, “Ron had family money and bad timing.” Somewhere else, Albert’s friend Paul is getting ready to meet up with him, presumably after a period of being out of touch—the reader senses that Albert is eager to confide in Paul about Ron, and possibly about something more serious. Esposito moves us deftly from the title characters’ separate presents to a shared adolescent past in which the two men struggled with identity, violence, and fractured family loyalties. “Save Tonight” by our Hewitt Award winner for Nonfiction, Jennifer Sembler, is a contemporary tale of sero-mixed coupling in a new era. Honest, tender, and lighthearted, Sembler brings the reader along on her journey—as a thirtysomething woman in Italy who meets and connects with G, a young man who reveals early in their friendship that he is HIV-positive. In a refreshing 180 on stories both true and fictional of revelations met with rejection or pity, G’s disclosure of his status prompts Sembler to educate herself: “I researched HIV and was amazed at the advances in treatment options, and how antiretroviral therapy can lead to an undetectable viral load, like G’s, which meant little to no risk of transmitting the disease when using protection during sex. I also read about pre- and post-exposure prophylaxis for those who were negative and sought to keep it that way.” Ultimately, Sembler determines that the “real risk” is not with HIV, but with losing a chance at love. A&U also salutes our four 2016 Hewitt Award finalists: Jill Evans (nonfiction), Chip Livingston (fiction), Whitney Sweet (poetry), and Michael Zimmerman (poetry)—we will be publishing their pieces in upcoming issues. —Brent Calderwood Brent Calderwood is Literary Editor of A&U and author of The God of Longing (Sibling Rivalry Press, 2014). Visit his website at: www.brentcalderwood.com. A&U • AUGUST 2016

nonfiction by Jennifer Sembler

Save Tonight

e were standing among G’s drunken Italian friends who were singing an awful karaoke rendition of Whitney Houston’s “I Wanna Dance with Somebody,” when G turned to me with a serious look in his eye and said, “There’s something I have to tell you later. Not here though.” I nodded and filed it away. A half hour later we were navigating our way through the cobblestone streets of Florence toward G’s car, which he’d parked illegally, as most Italians do. We reached a small square in the Santo Spirito neighborhood, quiet at that time of night, and as I linked my arm in his, I said, “So what did you want to tell me?” He hesitated. “You want to talk about this now?” “Well you said later. It’s later.” He took a deep breath. “I have to tell you that I’m HIV-positive.” I laughed, which wasn’t the most appropriate response, and then followed with, “Are you joking?,” even more inappropriate. In the time it took him to say “No,” my buzzed brain had already deduced he wasn’t. Who on earth would joke about having HIV? “I’m sorry,” I said. “It’s just that you gave me the look you do when you’re kidding and trying to keep a straight face.” We’d only been seeing each other a week, though this was our fourth date in that span, and I already knew one of his looks. We’d gotten close and quickly, as it happens sometimes when you encounter someone while living and working in a foreign country, as I was in Florence for the month. The dumb luck of meeting coupled with the uncertainty as to whether a future is possible fosters almost instantaneous bonding. We found his white VW and he cursed as he reached for the ticket on his windshield. “At least you weren’t towed,” I said, reminding him of the car we watched being pulled away on the back of a truck a few hours earlier—the one unlucky one in a sea of cars just as illegally parked, an apt metaphor for his situation, I imagined. When we got in, he relayed his story in a methodical way: how he was diagnosed a year and a half earlier at age thirty-three, how he’d feared he’d unknowingly passed it to his then-girlfriend though she ultimately tested negative, and how he contracted it was up for speculation. He told me about his five-pills-a-day regimen, his every-other-month hospital visits, and that he understood if I didn’t want to sleep with him. “I don’t take it personally. I understand the fear and where people are coming from. I don’t blame them.” I marveled at his levelheadedness, and how he didn’t fault people for holding against him a thing that wasn’t in his power to change. I don’t know if I’d cope so well with that type of unfair rejection. “It’s an illness. It’s not who I am.” He fell silent. I asked him probably more questions than I should have about risks and viral loads, sexual liaisons since he discovered his diagnosis, his current health status and how he really felt. Then it got quiet. “So I’ll drive you home now.” He started the car. “To my home or yours?” I asked. “You want to come to my home?” “You don’t want me to come to your home?” “Of course I do, but I wasn’t sure if you wanted to.” “Well you didn’t ask, did you?” I countered, enjoying this little linguistic mating dance. “Do you want to come home with me?” He conceded. “Well I want to continue hanging out with you, so yes.” He smiled, visibly pleased, and backed the car out of its tight space. On the way, he talked about AUGUST 2016 • A&U

poetry Days of 1993, ’94, and ’95

The Montrose Clinic, Houston

Timing; the lag. You couldn’t know. Well, you could. The slip in your wallet. The gravel lot— a trailer, weeds, no sign. Your blood drawn up, stoppered, a cotton-ball blot band-aided to forearm. You could. You could match numbers on test tube and slip, return in two weeks. Wait three months. The lag. More blood, new slip. You careful? Are you? Good. Or learn —what? Discipline: to take yourself in hand. Not so hard, right? But look: you’re back in that chair, forearm slung forward, dammed with a purple band, new slip crammed in your pocket, thinking where, how it might have gotten in—that tainted cell— and wondering who you could and couldn’t tell.

—Benjamin S. Grossberg Benjamin S. Grossberg’s books include Space Traveler (University of Tampa, 2014) and Sweet Core Orchard (University of Tampa, 2009), winner of the 2008 Tampa Review Prize and a Lambda Literary Award. His chapbook, An Elegy, is forthcoming from Jacar Press later this year. Grossberg teaches creative writing and directs the creative writing program at the University of Hartford.

moving out of his apartment to move in with his girlfriend, only to move back into it a few months later after the relationship fell apart. “So last year was a big year for you, huh?” I tested the waters. He laughed. We didn’t have sex that night, but I slept in his arms, my face nuzzled in his neck as his breath caressed the tip of my nose. The next morning I stared out the balcony door eyeing the clouds as they imperceptibly lifted the slightest bit to reveal a layer of blue beneath. “It looks like it might be a nice day. You know you promised to take me to the seaside this weekend,” I said, referring to our first date one week earlier. “I don’t think I promised,” he laughed. “Besides, I think I was just trying to impress you.” “Keeping your promise would impress me.” He relented and we drove to Forte dei Marmi that day and sat on a bench on the boardwalk, his arm around my shoulder and my head rested on his. We talked. We laughed. We enjoyed moments of companionate silence as we watched the sun sink into the horizon and paint pink and purple brushstrokes across the sky. Later that day, he thanked me for urging him to go. On the ride home, I laughed harder than I had in longer than I could remember when he debuted his crazy hand-dance moves as we sang along to Eagle-Eye Cherry’s “Save Tonight.” I laughed even harder when he said, “Good night eagle face cherry.” “But they’re such majestic animals,” he explained while I scoffed. “You’re lucky English isn’t your first language, otherwise I’d take offense. Being called an eagle is not a compliment.” After I stopped laughing, I kissed him and got out of the car, slightly disappointed that he hadn’t invited me over for another sleepover. It had been a long while since I’d had so much fun with a man, and the fact that he’d revealed his status brought us closer than expected sooner than expected. Watching someone’s worried eyes search yours for acceptance as they deliver news like that only deepens empathy and compassion. The next few days I researched HIV and was amazed at the advancements in treatment options, and how antiretroviral therapy can lead to an undetectable viral load, like G’s, which meant little to no risk of transmitting the disease when using protection during sex. I

also read about pre- and post-exposure prophylaxis for those who were negative and sought to keep it that way. But what I thought about more in

was something I rarely felt. Those were the things that mattered because that’s who G was. He wasn’t a diagnosis, one that some might use as an excuse to write him off. To me, the real risk was not in his disease, but in letting the revelation of it smother the small spark between us before it had a chance to burst into a bonfire. Four days later, he picked me up and I spent the night at his place. This time I did more than just sleep in his arms, and when he placed his lips on mine sending jolts of electricity through me, his status was the furthest thing from my mind.

“At age thirty-three and single for the past four years, that excitement was something I rarely felt.“ those next few days was G’s offbeat sense of humor that led to uncontrollable bouts of laughter, his quick wit and intelligence, his sensitivity and especially how he caused a frisson of excitement to surge through me every time we kissed. At age thirty-three and single for the past four years, that excitement

Jennifer Sembler is a freelance writer who originally hails from New York, but currently lives wherever her newest whim takes her, which is usually near a beach.

fiction by Marie Esposito

Albert’s Prayer

lbert wore a silver cross in his left ear. It dangled like a hanged man. A new Eartha Kitt song, “Where Is My Man,” played over and over in his head. Albert pictured Eartha growling, wearing shiny leopard spandex and gold high heels. He took a sip of wine cooler. God, thought Albert, I wish I was Eartha Kitt. Albert was waiting for his friend Paul at the Norseman Club downtown. Everyone thought Paul and Albert were ex lovers, but it wasn’t true. Albert had only slept with three men in his whole life. Four if you counted his cousin in the sixth grade, but Albert didn’t count him. Albert told Paul to meet him at the Norseman because he felt safe there. It was dark and gaudy and full of old queens. The bar was U shaped, the color of April mud, held together by a thousand layers of polyurethane. Most of the maroon vinyl cushions on the oversized barstools were cracked, exposing

spongy, yellow guts. A wrinkled man in a fur coat sat on the other side of the bar drinking Manhattans. He covered a glass ashtray with one dry, sallow hand, blowing smoke upward into cirrus clouds. Behind him hung a massive gold-framed painting of a one-eyed Norse god riding an eight legged horse among tiny people and tiny trees. Game show music bleated from a precarious overhanging television. The old man shouted, Ann-Margret, you idiot. The game show bleated back. God, thought Albert, I love this place. Albert had just returned from a trip to Hawaii. His usual pale skin looked like a lightly toasted marshmallow. Ron, Albert’s lover of eight years, rushed them to Waikiki to “take their mind off things” when Albert told him he was HIV-positive. Ron had family money and bad timing. On the last night of their trip, Albert walked into the men’s room of the hotel lobby and caught Ron fucking a bellboy. Ron claimed A&U • AUGUST 2016

it was stress. When they got home, Albert packed everything he could fit into his car and called Paul.

***

Paul hated the Norseman Club. It was dark and gaudy and full of old queens. Albert called him from there saying he’d left Ron. It’s about time, thought Paul. But now he’d have to cancel his date for the second time in a week. The first time, old Mrs. Rutgers was flown in from Florida for her wake. Paul needed to pick her up at the airport immediately. She looked like hell, and he spent hours on her hoping she’d at least resemble the picture the family gave him. Funeral Director was never a career aspiration for Paul, but as he liked to tell people, he learned the business from the ground up. As a kid, he shoveled the sidewalk at Peabody’s Funeral Parlor, a small business three blocks from his parents. Mr. Peabody encouraged him, and he wound up in mortuary school. He excelled at his work, paying close attention to detail, staging grief like a Broadway show, wearing black beautifully. The irony of Paul’s profession was not lost on him; his family was riddled with death. Two out of the five children had already died. The oldest boy was killed in a car accident when Paul was ten, and the youngest sister died of cancer five years ago. As the middle child, Paul sometimes felt the deaths of his siblings falling in on him like dominos. And now his friends were dying. And their friends. And more. Paul’s funeral home was becoming a “gay establishment,” the flower arrangements lavish, the music bold and eclectic, the lines at the wake like Saturday night at The Hippo, and Paul’s eyes just as haunted as the men who walked through his doors. Getting ready to meet Albert, he thought about his sister’s wake. Albert passed around snapshots from a Halloween party, Paul and him wearing fuchsia lipstick and black minidresses. This prompted the only words his mother spoke that day. You boys have great legs. She loved Albert. Paul was a junior in high school when he met Albert. He was popular, a member of the gymnastics team, the track team, and the student council. He had heard of Albert, a skinny freshman with a head of blond curly hair and a squeaky voice, known for taunting older boys until they beat the shit out of him. “Oooh, paisley,” he’d squeal, pointing AUGUST 2016 • A&U

flamboyantly towards the shirt of some enormous senior. One day, Paul was running track and Albert yelled out to him, “Oooh, nice legs Pauly.” Paul flew on top of Albert and flattened him to the ground. The other runners cheered him on. Teach that little faggot a lesson Paul. He wrapped his legs around Albert and they rolled over and over. Albert’s yellow curls blurred against blue, then green, then blue, then green. Paul smelled Doritos and baby powder. He swung a few punches at Albert’s arm for effect. When Paul stood up he was flushed and breathing hard. Tears welled up in his eyes and he quickly wiped them into sweat. A week later, Paul’s father went out on the front steps to get the Sunday paper and nearly fell over the curled up body of Albert. Shiny purple black bruises rose off his body like heat. A large gash of dried blood crossed his forehead, and his eyes were swollen into straight lines. “Is Paul home?” he squeaked. “I’m a friend of his from school.” Paul’s father brought Albert into the house and after hearing what happened, called Albert’s father. They had words. Then, he woke up Paul. “Your friend Albert will be staying with us for a few days to give his tough guy father a chance to cool off.” “My friend Albert?” said Paul. In the kitchen Paul’s sisters were giggling with Albert. He was telling them Helen Keller jokes. When Paul walked in and saw his face, he felt a little sick. He put a strawberry Pop-Tart in the toaster

like it was a perfectly ordinary morning. “What’s up?” he said.

***

The bartender brought Albert another wine cooler and commented on his tan. Albert was wearing a white sweatshirt to show it off. When the bartender left, he pushed one sleeve up to his elbow and studied a small magenta blotch on his forearm. He thought of all the bruises his father gave him. He hadn’t seen his parents in sixteen years. When Albert was a kid he used to get up in the middle of the night, grab a hammer he kept under his nightstand, go to his parents’ bedroom, and stand over his sleeping father. He prayed for the strength to shatter his father’s head into a thousand splintery shards. But every night, the hammer grew heavy in his hands, his feet became numb with cold, his skin stretched taut across his fragile bones, and his prayer remained unanswered. Albert stared at the monstrous god in the painting across from him, the tiny people, their tiny world, disappearing in swaths of smoke. Albert shivered and pulled his sleeve back down. “Please Paul,” he whispered into the dark air. “Please hurry. I want to go home.” Marie Esposito lives in Rhode Island with her spouse, two daughters and three dogs. When not at the day job or spending time with her family, she blogs at ifyoucantwriteblog.wordpress.com and chips away at her novel.

DREAMS Team

A Public-Private Partnership Re-Thinks HIV/AIDS Prevention in Girls and Young Women by Larry Buhl In real numbers, this empowerment is projected to reduce HIV transmission in “high-burden” areas by forty percent by 2019. The high burden areas include Kenya, Lesotho, Malawi, Mozambique, South Africa, Swaziland, Tanzania, Uganda, Zambia, and Zimbabwe. Those countries account for nearly half of all the new HIV infections that occurred among adolescent girls and young women globally in 2014. PEPFAR says DREAMS will deliver outreach, education, and information

June hosted by the U.S. State Department and sponsored by the President’s Emergency Plan for AIDS Relief (PEPFAR) and Population Services International (PSI), PEPFAR Ambassador Deborah Birx, actor and PSI Ambassador Debra Messing [A&U, November 2012], and founder of Maverick Collective, Pam Scott, unveiled some of those goals and discussed how to change minds in order to save lives. They agreed that not only have women and girls been left behind in HIV/AIDS prevention, the efforts to reach them have been top-down and ineffective. Through DREAMS they aim to change that.

Human-centered design: meeting people where they are These statistics repAt the conference Pam resent a “fundamental Scott, whose company uses neglect” of young wom“human-centered design” to en by policymakers in approach harm reduction, the HIV/AIDS commudescribes how to meet women nity, which has historand girls and health professionically neglected young als in Africa where they are. women, according to “In development, the first Global Fund Executive thing we do is we go into Director Mark Dybul. communities and we start to To address this understand where, how, and long-term neglect, why problems perpetuate,” Deborah Birx delivers remarks at her 2014 swearing-in ceremony to become the $385 million Scott said in her presentation. Ambassador-at-Large and Coordinator of the United States Government ActiviDREAMS partnership “We spent quite a bit of ties to Combat HIV/AIDS at the U.S. Department of State in D.C. 2014 was launched by the time interviewing individuals President’s Emergency and influencers in our audiPlan for AIDS Relief exchange that “combines evidence-based ence themselves, families and groups, and (PEPFAR) in partnership with the Bill and approaches that go beyond the health secwe use those insights to help us understand Melinda Gates Foundation, Nike, Johnson tor, addressing the structural drivers that where design can intervene in the narrative & Johnson, and Girl Effect. directly and indirectly increase girls’ HIV to have exponential impact.” DREAMS stands for Determined, Rerisk, including poverty, gender inequality, Scott used an example of using emsilient, Empowered, AIDS-free, Mentored, sexual violence, and a lack of education.” pathy while working with PSI to address and Safe women, according to PEPFAR. At a DREAMS kick-off conference in unintended teen pregnancy in Tanzania. She

A&U • AUGUST 2016

photo courtesy U.S. Department of State

ith more than 1,000 new infections daily, young women and adolescent girls are the biggest risk group for HIV infection in the world, according to UNAIDS. The risk is highest in sub-Saharan Africa. Some sobering statistics about the region: • More than seventy percent of all new HIV infections among adolescents are girls. • HIV/AIDS is the leading cause of death for females between fifteen and forty-nine years-old. • A quarter of girls age fifteen to nineteen report that their first sexual experience was involuntary.

photo s by Eric Gauss

shared that the people most often standing in the way of the social change they wanted to create were the doctors, nurses, and pharmacy staff that refuse to give girls the contraception that they have a legal right to. Instead of fighting them, Scott and her team visited villages around Tanzania to make friends but didn’t come bearing sexual “shoulds.” “We did role-play and storytelling to understand their point of view and really start to unpack it,” Scott said. “One of the techniques we use is to scribble little concepts—we call these sacrificial concepts—and show them to people to see if they change the trajectory of the conversation.” Scott recalled showing a box of oral contraceptives for adolescents to a nurse and how re-framing safer sex messages for the user can work. “The nurse looked at the box and looked at me wide-eyed and she said, ‘Wait a minute. You mean I could give this to a girl and it wouldn’t harm her fertility?’” Scott said. “We heard this over and over and over again, and we started to realize these weren’t bad people who were against girls. These were actually people who thought they were protecting girls. They thought that contraception would harm their fertility. And what’s a girl’s greatest asset in East Africa? Her fertility.” First steps To unpack the goals and strategies of DREAMS, I recently spoke with Ambassador Debra Messing and Deborah Birx. Birx said that as a global community, there have been some big successes in reducing HIV/AIDS transmission, including mother-child transmission, and encouraging young men to have safer sex, but adolescent girls have been left behind. “What we’ve found is that one-third of young women’s first sexual experience is rape, and that [their rapists] are typically around thirty years-old and many of them are HIV-positive,” Birx said. One might be inclined to focus education and outreach on teaching men not to rape and to get tested for HIV. That’s part of the equation, Birx said. The other part is empowering women and girls to “understand their value as females” and so that they understand what rape is and that it’s actually not okay. That message that young women and girls need to value themselves enough to AUGUST 2016 • A&U

say ‘no’ may seem obvious to those in western industrial societies. In sub-Saharan Africa, though, it’s not. DREAMS outreach and education advocates don’t aim to completely upend cultural norms in the largely patriarchal societies they’re working in. Their strategies are more subversive, using girls’ outlook about sex to take control of their bodies. Birx added that girls who have access to secondary schools are at lower risk of HIV. Because DREAMS is new, it’s long on goals but vague about specific solutions at this point. Birx said PSAs with culturally relevant language would be part of the overall package. Both Birx and Messing told me that specific outreach programs will depend on a strong understanding of cultural attitudes, both spoken and unspoken, that result in disempowering girls and young women in the region. Debra Messing, who’s spent years in listening tours, gave an example of some attitudes she discovered in her previous tours through sub-Saharan Africa. “Teen girls in these regions understand what HIV is, but they don’t understand their depth of risk,” Messing says. “What they are sure about is that they don’t want to get pregnant.”

Top: PSI Global Ambassador Debra Messing meets with traditional leader and community gate-keeper Windolosi Ntchona (second to right) at the steps of Chifunga Good Future Organization (GOFO) to discuss how testing leads to faster engagement in care. Bottom: At a focus group discussion in Jonathan Village, Malawi, Messing listens to women and girls between sixteen to twenty-five years old share stories about their experiences with HIV self-testing. That attitude is important to know when crafting messages, and media, for reaching women and girls with messages to promote empowerment and safer sexual choices. Messing is now traveling in Malawi with PSI and UNITAID. It’s a learning tour, she told me, to understand the effects of gender-based violence, exclusion from economic opportunities, lack of access to secondary school, and other factors that make girls and young women particularly vulnerable to HIV. “After learning more about these women and girls, I will advocate for what they say they need and want.” Larry Buhl is a journalist, radio producer, screenwriter, and novelist living in Los Angeles.

A&U â&#x20AC;¢ AUGUST 2016

emerging enlightenment

Marianne Williamson, Spiritualist Trailblazer & Founder of Project Angel Food Champions the Positive Side of the Epidemic, Heralding Unity, Change & Love by Dann Dulin

he day is radiant. The early summer sun surges through the window. The light gently caresses her face as she settles back in a plush Louis XV armchair at a hotel room in Beverly Hills. One cannot be in the presence of Marianne Williamson without engaging her tranquil incandescence. This celebrated author and lecturer did not attain this recognition overnight. The genesis of her mission began in the late seventies after she read A Course in Miracles, written a decade earlier by Helen Schucman. A philosophical and spiritual guide for living, it’s a book some have called “the New Age bible.” Marianne clarifies, “It’s a psychological study in surrendering a thought system based on fear and accepting a thought system based on love. All that exists is love. Everything else is illusion.” By 1983, the AIDS epidemic was exploding and Marianne was working as an administrator at L.A.’s Philosophical Research Society. A fellow worker suggested she lecture on A Course in Miracles—and her life journey was set. “Gay men in L.A. gave me my career,” she asserts, explaining that metaphysics and spirituality were also covered in her lectures. “Western AUGUST 2016 • A&U

photographed exclusively for A&U by Alina Oswald medicine had nothing to offer [at that time] and organized religions took time to work through their stuff. There was radio silence from all of them for a long time, and here was this young woman in her early thirties, over in Los Feliz [the eastern district of Los Angeles], talking about a God who loves you no matter what—and miracles.” Recently moving to New York City from her home in Los Angeles, Williamson has returned to L.A. for tonight’s lecture. Looking pensive, she’s in a reminiscent mood. Marianne offers me refreshments. I request water. She calls room service, orders water for me and tea for herself, and snuggles back into the chair, supported by a plumpy pillow that thrusts her to the edge of the cushion. Marianne possesses that genteel Audrey Hepburn elegance and her soft-spoken voice is articulate, with a soothing, cottony texture. Wearing minimal jewelry and little makeup, she embodies a bohemian spirit, with a dash of entrepreneurial businesswoman. Meeting her in the lobby a few minutes earlier, I was surprised at her five-foottwo-inch frame and low-key speech, which belies the fact that, when Williamson lectures, even though she maintains a mild

tempo and soft voice, her delivery belts a wallop to your core. From the beginning, word spread about Marianne’s lectures. Her audiences grew so large that she began holding her talks in a Hollywood church. “I remember during one of my lectures on The Power of Forgiveness this young man said to me, ‘Do I have to forgive everybody?!’ And I said, ‘Well I don’t know. What do you have? Do you have the flu or do you have AIDS? If you only have the flu, just forgive a few people. But if you have AIDS, yeh, you might want to take all the medicine.” She continues. “Then one Sunday, one of the guys said that he wasn’t going to go to the support group that day because he had a good week and was doing fine. I remember saying to him, ‘Well today maybe you should be there to give support to someone who did not have a good week.’ I won’t forget the look of empowerment on his face. He did show up at the group that day!” she relates energetically. “A support group doesn’t mean just where you go to get support but it’s where you also go to give support.” The bell rings and Marianne continues the conversation as she answers the door.

“A Course in Miracles was beneficial during AIDS.” The waiter sets the tray of drinks on the coffee table. “There is no death,” she offers. “Knowing this helped these guys die peacefully. The body is just a suit of clothes. Death is not the punishment; death is the reward. So many young men would say to me, ‘But I didn’t have the chance to do anything.’ I’d say, ‘Did you love?’ They’d answer, ‘Yes.’ ‘Then you succeeded in this life,’ I’d reply. The teachings were very helpful for them.” She lifts the teapot and pours water into her cup. Opening the teabag, she dunks it in the water as she speaks. She adds honey then licks the spoon, wiping her hands on a napkin. Marianne recalls visiting a man in the hospital who had been diagnosed with AIDS. When she walked into his room, he said, “Oh Marianne, did you see the boat outside the hospital?” “No…what boat?” “Marianne, don’t tell me you didn’t see. It’s right there—and you didn’t see it? You couldn’t go into the hospital without seeing it! Go to the window.” Marianne walked to the window and looked down. There was no boat. “Marianne…there’s a huge ship!” She later learned it’s quite common to see a car, a ship, a train, or a plane when one is dying. We discuss Steve Jobs’ last words, “Oh wow. Oh wow. Oh wow,” and speculate about what he saw. Marianne mentions a book by her friend David Kessler titled Visions, Trips, and Crowded Rooms. An expert on healing and loss, Kessler worked closely with Elizabeth Kübler-Ross (author of the groundbreaking On Death and Dying), also helping Marianne with one of her projects, Center for Living. Williamson met Kessler when he volunteered his apartment for her support group. “He was the yang to my yin, the business counterpart to my vision of what

could be.” Around the time of her growing popularity, her sister was dying of cancer. This prompted Marianne to found Center for Living in Los Angeles, a non-medical support for people dealing with life challenging illnesses. “For me, it was not specifically AIDS-focused,” she clarifies. One of the first fundraisers for the organization was held in her apartment. “We served an elegant little dinner and I sang cabaret. I know!” she self-mocks, even though she used to be a lounge singer in New York. Another fundraiser was held at another venue, and the majority of those present were guys who were attending Williamson’s lectures. “One of the things I still believe strongly about is that seeking spiritual growth without service becomes narcissism. Helping others was a way for those who attended my lectures to deepen their spiritual journey, as it was for those who were being helped. But remember, it all became the same community.” David Geffen attended one of her lectures. Later that day, he called her. “Marianne, I heard you say you want to rent a house and start an organization for people who could be dying. Tell me

about what you want it to be.” She responded, “Well, you know, a place where people could get therapy. They could get a massage, watch TV, attend support groups, and get fed. It would just be a place for people to go so they wouldn’t just be at home, scared and upset.” He responded, “Okay that’s great. How much money do you need to do that?” She didn’t quite know how to reply. “Well, I think I need $5,000.” He repeated the figure back to her. “Yes,” she said, explaining to Geffen that she would need a first and a last month’s rent. Recalling it today, Marianne laughs evenly, “Here I am trying to inform David Geffen!” After a little more discussion he agreed. About an hour later Marianne’s doorbell rang. A messenger handed her a check for $50,000! Marianne’s eyes are misty as she retells the story. Eventually, a house was rented on Sierra Bonita Avenue in West Hollywood for the Center for Living. A couple of years later, a new idea struck Marianne. “What started happening was that I’d go to the house [Center of Living] and ask where [a client named] Bobby was. He wasn’t there because he couldn’t get out of bed. How was he going to eat?!” Then I said, ‘We’ll have to take him food.’” She called David Kessler and told him about the situation. He contacted APLA (AIDS Project Los Angeles) and floated the idea past them. They didn’t deem it necessary. Marianne countered, “I wouldn’t be feeling it this deeply, David, unless we needed it.” Williamson trusted her intuition and in 1989 established the outreach program Project Angel Food (PAF), hiring volunteers to cook and prepare the food and then deliver the meals to those who were homebound. The project ultimately took on its own life. In 1993, the Center A&U • AUGUST 2016

for Living merged with Project Angel Food (PAF). The organization is still around today and recently served their ten millionth meal! “Project Angel Food was kind of like the child that ate the parent. When you say to people, ‘non-medical support services,’ they say, ‘Oh that’s nice.’ But when you say ‘food,’ they get it!,” she exclaims. PAF’s first fundraiser was held by Marianne, David Kessler, and Louise Hay [A&U, April 2010], who was conducting her own filled-to-capacity “HayRides,” a joyful support group for people living with HIV/ AIDS. Hollywood showed up! Some of the guests included, Bette Midler, Tony Perkins, Elizabeth Taylor [A&U, February 2003], and Howard Rosenman [A&U, Dec 2009]. They brought in $11,000. (In 1992, the Elizabeth Taylor AIDS Foundation provided PAF with its first grant of $150,000.) Two years later, Williamson opened Center for Living in New York City (she received another $50,000 from David Geffen). One also opened in Palm Beach, Florida, though not by Marianne. The Palm Beach Center for Living’s first fundraiser was held at Mara-Lago, an estate owned by Donald Trump. Marianne was then living in Manhattan and had a young daughter, India. (Her daughter is now twenty-six and studying at Goldsmiths College in London for her master’s. She plans to be a history professor.) One evening as Marianne was leaving the Center for Living, she received a call asking if she was going to attend the fundraiser in Florida. She said she wasn’t, that she was going home to take care of her child. The caller added that Donald Trump had stated the only reason he was allowing Mar-a-Lago to be used was so his wife, Marla Maples, could meet Marianne. He solidly pressed on, stating that, if Marianne didn’t attend, he would cancel the event. “I remember being very upset and feeling bullied,” she specifies, looking rakish dipped in black form-fitting jeans, a flowing blouse, and swaddled in a jacket that’s draped over her shoulders. “That’s why I attended the event. Whoever took the call said he was very serious. And I’m glad I did go.” She shifts her lithe body and takes a drink of tea. “What would be touching about these fundraisers is that these guys would be in tuxes or very dressed up and

had Kaposi’s [purple lesions] all over their bodies,” she says, contorting her face with a sad grimace. “But let me tell you about Marla. She stayed up with these guys very, very late, sitting with them until the last one left. I had never met her before and I just looked at her…” Marianne’s voice is strained with emotion. “She was so present. She just didn’t give her home, she gave of herself. I have never forgotten that. Marla Maples is a wonderful woman.” Marianne adds more honey to her tea, then stirs it with her spoon, clinking the sides of the cup as she tenderly yanks her coat forward, which has slipped off her shoulder. “I was honored and privileged to know many,” Williamson spiritedly revs, “who dwelled within the AIDS experience with such bravery and aplomb

other places, as well. I was always saying to people, ‘We have to envision and pray for the day when it becomes a chronic manageable condition. That’s what it is today.” Marianne’s empathy was developed early on in her hometown of Houston, Texas. Her father was an immigration lawyer and her mother was a homemaker and she was raised in a “traditional Jewish home.” Though her parents have passed, she maintains the core values they taught her, which was “to give” and “to be there for others.” “We used to put clothes in a bag and give [it] to Salvation Army and my mother used to make us not only iron the clothes, but fix the clothes if a hem was torn or a button was missing. My mother used to say, ‘Think of what it’s like. You’re already getting second-hand clothes. The least you can do is make them lovely.’ Back in the day people would come to our door, looking for charity. I never heard my mother say, ‘My husband gave at the office’ and close the door. She’d say, ‘My husband gave at the office but I will give a little something as well.’” Her mother was head of the volunteer corps at the main charity hospital in Houston. Williamson’s interest in spirituality and metaphysics began when she was a teenager. She took a summer class at Phillips Exeter Academy called “Philosophical Approaches to the Question of God” and Marianne was smitten. In the early seventies, she studied acting and philosophy at L.A.’s Pomona College, but dropped out. She moved to New Mexico and lived in a commune with her boyfriend. After a year, they broke up and for the next decade she meandered from Austin to New York to San Francisco, taking on odd jobs (temp secretary, waitress, and cabaret singer) and boyfriends who never worked out. “I was a complete mess,” she admits. “Whatever sounded outrageous, I did it.” In the late seventies, Marianne returned to Houston and opened a New Age bookstore. She even tried marriage for about “fifteen minutes.” Nearing a breakdown, she began therapy. “I would do anything to distract myself from the truth. I’d seek relief in drugs, food, people, whatever.” She didn’t discover relief and guidance until she picked up A Course in Miracles at a friend’s home.

“I saw heroism among people

who themselves knew they wouldn’t live to see the fruit of their labor in terms of these organizations we were starting— and through that and with that

I saw great Love, which

AUGUST 2016 • A&U

works miracles.”

and elegance. “Hope is born of participation in hopeful solutions. The people moaning and groaning and going on about how awful it was,” she notes in a singsong impish way, “did not tend to be the people who were helping.” Williamson lets out an exhaustive gasp, “We were too busy at support groups and starting an organization and attending funerals to be overwhelmed.” Marianne crosses her legs, exposing her chic white-pointed heels, decorated with colorful pop art flowers. “I saw heroism among people who themselves knew they wouldn’t live to see the fruit of their labor in terms of these organizations we were starting—and through that and with that I saw great Love, which works miracles. It was a collective experience about suffering,” she pinpoints with passion. “No one was under the impression that ‘it was just happening to me.’ There was a reaching out, a sense of ‘what we can do, how we can be there for each other.’” She balances an eggshell-white teacup on her lap. “One miracle is the community that was formed here in Los Angeles and

continued on page 62

SPOKEN WORDS

POET & AIDS ADVOCATE MARY BOWMAN RAISES AWARENESS ABOUT INDIVIDUALS LIVING WITH PERINATAL HIV INFECTION & DISCUSSES HER JOURNEY OF HEALING AND THE POWER OF SELF-CARE by Chael Needle

Photographed Exclusively for A&U by Sean Black

ary Bowman raised her hand one day in her fourth-grade class, stood up, and spoke a few words. She announced that she was HIV-positive. She shared a fact about her life. She wanted to participate. The teacher had been talking with the students about Ryan White, the Indiana youth, infected with HIV through blood treatment for his hemophilia, who had been stigmatized and discriminated against by parents and teachers at his school because of their AIDSphobia and unwillingness to learn the facts about HIV transmission. He was banned from school. Neighbors cancelled their subscriptions along his paper route. Students were withdrawn from his school by their parents after a successful court battle allowed him to return. Ryan’s mother, Jeanne White Ginder, has said, “It was really bad. People were really cruel; people said that he had to be gay, that he had to have done something bad or wrong, or he wouldn’t have had it. It was God’s punishment....” By the time Ryan died of AIDS-related causes in 1990, just shy of his high school graduation, he had become a teenaged activist, even gaining the ear of the Reagans. By the time Mary’s teacher had mentioned him, about seven or eight years after his death, Ryan had long since been the subject of a made-for-TV movie and had become an inspiration for millions everywhere; his legacy of advocacy has lived on, perhaps most prominently through a federal HIV/AIDS care program that bears his name. Although fourth-grader Mary had been living with HIV her entire life, diagnosed six months after her birth, she had only been recently told of her serostatus, by accident, at a doctor’s visit. During triage, a nurse had asked her how long she had been HIV-positive. Mary didn’t know the answer. “I had never heard that word before; all I knew was: I take medicine because I have a blood condition. That’s what my family called it....” When the teacher mentioned White, a few days after this doctor’s visit, Mary became excited. “I was like,

A&U • AUGUST 2016

JULY 2016 â&#x20AC;¢ A&U

‘Oh, my gosh, there was a kid who has HIV and he speaks out,’” says Bowman. Afterwards, her classmates started to shun her, and Mary became discouraged. She faced a policy of silence within her own home, too. The woman she calls “Mom,” the wife of her father, who had taken her in, had not wanted her to disclose. “My parents didn’t want me to tell my secret. It was like, ‘You have to keep certain things private in our home.’ That really just closed me up...I didn’t feel like I was good enough.” Suddenly, Mary became burdened under the weight of all those negative feelings about herself. Her battle with internalized stigma had begun. Mental health issues haunted her through high school, though later she worked through them. Of living with HIV, and putting a name to the condition at eight or nine, she says: “I didn’t know it was a bad thing until I disclosed. I mean, it’s not a bad thing, but I didn’t know that the world thought it was a bad thing, so I disclosed my status.” Mary’s mother, Franci Lonece Smothers, who went by Lonece, died of AIDS-related causes in 1992, three years after Mary’s birth in 1988. Mary has written about this mother she did not know in “Dandelions,” a poem in her collection titled Lotus, which won the National Underground Spokenword Poetry Awards’ Book of the Year prize and was published under the name, Marie Elaine. “My mother was a dandelion in the midst of roses / Ignorant of her purpose she uprooted her soul and unknowingly left herself for dead / It has been said that my mother when above the influence transmuted broken hearts into smiles / All the while dying on the inside / AIDS didn’t kill my mother / It put her at rest....” On the page, as this excerpt shows, the power of Bowman’s words sparks thoughts and feelings—the heat of melancholy, the heat of empathy; on the stage, the power of her words makes you want to dip your torch in hers and run around like an Olympic bearer, rallying others to join in the celebration and the critique. If you have not had the pleasure of hearing her at Spit Dat or Busboys & Poets, two popular spoken-word sites in D.C., you can seek out her spoken-word performances on YouTube. You can sense her deep connection with the audience as well as her brilliance, as she fits words together and finishes a puzzle you may have only started. Spoken word poetry demands the embodied self, and Bowman uses this convention to not only touch on current events but also to engage listeners as a woman living with HIV. Each word spoken, angry or joyous, is

an invitation to heal. In “I Know What HIV Looks Like,” she expands the space of positive identity to include herself and others who have been disappeared by stereotype or misperception: “It was predicted that she would breathe her last breath before 5 / But now / Here she stands 5 foot 9 / 15 years after her expected demise... / She can’t allow people to go on and think / That HIV only looks like / Skinny bodies, pale skin, open sores, and baby thin hair / She can’t help but start a movement that does more than just wear red t-shirts on December 1st / No matter how much it hurts....” Raised in Clinton, Maryland, a stone’s throw from D.C., where she now lives with her wife and stepson, Mary found an outlet for her bottled-up feelings one day in ninthgrade English class. Her impetus to continue writing is sourced, in part, in her early home life, where the approach of keeping private her diagnosis and the circumstances of the death of her mother became more of a hindrance than a help. With poetry, she enjoyed being able to express all that was not supposed to be talked about. “Writing just freed me,” Bowman shares, “and I could just talk about anything I wanted to without consequence so that’s really why I kept writing.” Her creativity was further nurtured in a high school poetry club called BASU Poetry, and watching spoken-word performances on HBO’s Def Poetry Jam on television helped to introduce her to the genre at which she would excel. Graduating in 2006, she did not step up to Spit Dat’s open-mike stage until the end of 2008. Although Bowman considers poetry her main medium, she has recorded an album of music called Love B.O.A.T.S. (Based on a True Story) and even dabbled in photography thanks to the Through Positive Eyes project, which invites individuals living with HIV/AIDS to document their realities with cameras. However, she is going to leave photography to the photographers, she relates with a laugh. As for her creative process, Bowman eschews staring at the blank page. She cannot compel creativity. Sometimes, she approaches her creative process more formally, like when she composed songs for her album, but even then nothing was forced. She seizes the moment when it comes: “I’m just like, ‘Okay, well, now is the moment to write.’ It usually comes to me through divine inspiration.” As for mortal inspiration, Bowman quickly responds: “Maya Angelou, I would have to say, is my number-one inspiration,

icon, mother spirit, spirit animal, whatever you want to call it! Maya Angelou definitely is one of my biggest, biggest, biggest inspirations.” (She is tickled when I promise to send her the January 2001 A&U issue featuring the Angelou cover story.) She makes a point to mention Lucille Clifton, too, citing the empowering “Won’t You Celebrate With Me” as one of her favorite poems. She is also inspired by poets in her local community, like Rasheed Copeland, with whom she came up as a poet; Yaya Bey; and Michelle Antoinette, whose poetry name is “Love The Poet.” About Michelle, Bowman says: “Not only her words but her drive and her commitment to art especially inspires me. She’s actually a close friend of mine, so she’s one of the only people in the poetry community that kind of took me under their wing and saw something in me that needed to be nurtured—and took the time out to nurture it.” Spoken word poetry relies on, or, rather, demands audience interaction. On why the audience is so important, Bowman explains: “Because it’s for them essentially. I learned a couple years ago that I’m not here because of me; I’m here because there’s a greater mission and purpose for my life. And, so, whatever words I’m given to give to people it’s [for them]. I mean, it’s for me first, of course, to do the healing part, but when I take it to the stage it’s for the audience. So that’s very important...because you never know what somebody is going through in the audience. And, so, what I say can make or break a situation and I take that responsibility very seriously.” She continues: “When I first started, I used to spit poetry with my eyes closed; I wouldn’t look at them. I would just spit the poem and try to get through it, but what I worked on was to open my eyes and really talk to people. Sometimes [now] I just go into the crowd and just look at people, literally in their face, while I’m spitting my poetry!” And for those who have dismissed poetry, she wants them to understand that poetry can be fun—and life-enriching. “Poetry is universal. If you allow yourself to be present, in the moment, you’ll get something out of it.” She has recently taken a break from spoken-word performances, though continues to participate in the community as a host at Busboys. “Right now I’m working on life,” she says, with a chuckle. But she is serious about this respite, creating for herself a space for self-care. She wants to be careful, too, about planning her next move. “I don’t feel obligated to be something that I’m not ready for yet. You know what I mean?” A&U • AUGUST 2016

Asked if as a creative person she worries about running out of material, she responds: “Yes, I do worry about running out of things to say. That’s kind of where I am now. It’s like, okay, writing ‘Dandelions’ was easy. Not easy in a sense that I’m such a great writer and it was just easy; it was easy in that things just came to me, so I sat there and just let the words flow through me. And, so, now, I’m like, ‘Okay, well, what do I want to say?’ So I’ve been really praying and trying to focus on myself and my spirituality in trying to change the message because, I think, that I have way more to offer than what I’ve already offered, if you understand what I’m trying to say.” What do I want to say? The question that Bowman poses in her creative process interconnects with her HIV advocacy, which spirals up from her life experiences living with HIV and losing a mother to AIDS. In “My Mother, My Thought,” Bowman delves into the loss of her mother: “Like it doesn’t hurt cuz it does / Alive is what she was / And will never be again / But she will always be a thought / My thought / My mother.” Asked if her family kept her mother’s memory alive, Bowman responds: “I think my parents did the best that they could with what they had. My mother was young—I think my mother was twenty-seven or twenty-eight when she passed away, so she was extremely young when she had me—[and] because of her history [with substance use] my parents tried to give me the story as best they could without demonizing her. And, so, the stories that I got weren’t necessarily stories that I probably would have liked to hear.” She empathizes with her parents. “As I matured I had to realize that, for my parents, it was a sticky situation. My father cheated on his wife and I was a result of his infidelity. So, of course, that’s going to be a touchy subject for my parents anyway....So, yeah, it was kind of a weird situation I grew up in, but it made me better.” Once older, Mary culled stories from other members of her biological family— her father hadn’t known her mother that well—and she developed a better sense of who her mother was. “She was definitely a person who loved to laugh, loved to have a good time, to dress well,” shares Bowman. These family members filled in the big picture with smaller snapshots. “I remember a couple of months ago I asked my older sister what kind of cigarettes my mother smoked. And she said, ‘Newport shorts, soft pack,’ and I was like, ‘Wow, that’s the same type I like.’ Things like that get me excited AUGUST 2016 • A&U

because people don’t realize that missing out on those intimate details definitely affects you as a child.” Bowman feels connected to her mother, and, when I ask if she feels her life is a continuation of her mother’s journey, she agrees with this notion. She does not feel an obligation, however, to represent her; her

advocacy and empathy have been an organic evolution. “I feel like this is what I was born to do and that realization came when I was twenty-five,” she says, having realized at the time that she was around the same age as her mother when she gave birth to her. “So that really put things into perspective. What would I do at twenty-five with five children?

I don’t know what I would do. I would probably go crazy! But she was able to do the best she could with what she had. And, so that put me in a place where it’s like, ‘Okay, I’m not only doing this for my mother, but I’m doing this for young women who are like my mother and who are maybe in the same shoes that she was in.’ So, it’s more of a responsibility, less of a burden. I don’t feel like I have to, but I feel grateful and I feel honored to be able to go on in her name and carry her name with me wherever I go.” Bowman, twenty-seven, has carried her mother’s name far in a short time. She has been an ambassador for the U.S. Department of Health’s Office of Women’s Health for its Women and Girls HIV/ AIDS Awareness Day, has lent her voice to National Women & Girls HIV/AIDS Awareness Day and National Black HIV/ AIDS Awareness Day PSAs, has worked

at an HIV/AIDS organization focused on women, and has performed at the XIX International AIDS Conference, AIDSWatch (receiving a Positive Leadership Award from the advocacy initiative in 2015), and DIVAS Simply Singing!, among other events and conferences. She has also facilitated support groups for youth living with HIV and has spoken on panels. She has started her own initiative called Purpose Over Entertainment (P.O.E.T.), which utilizes “social media, visual and performing arts to foster holistic conversations regarding those infected and affected by HIV/AIDS in the Greater Washington, D.C., area in an effort to eliminate the stigmas surrounding HIV/AIDS and individuals living with and affected by HIV/AIDS.” “What prompted me was the need for young people to be invited into the space of HIV prevention, and, through art and using

art as a vehicle, to drive advocacy and awareness to the masses,” Bowman says about her motivation for starting Purpose Over Entertainment. “As a young person myself growing up living with HIV, I didn’t have anybody to go to for inspiration. We had support groups at Children’s Hospital and things like that, but it still wasn’t enough. For instance, I didn’t know what to do in social spaces. I didn’t know what to do when sex conversations came up. I didn’t know how to be a young person living with HIV. And, so, what I wanted to do was teach, or inspire, young people to know that you can be young with HIV and still live a normal, healthy, amazing life. That you don’t have to be ashamed of what you have because it’s not your fault. And I wanted to be a living example....” When we hear an advocate living with HIV/AIDS, that person is usually an adult, usually someone who contracted HIV as an adult. Not often do we hear from someone who has been perinatally infected—Nkosi Johnson became a positive force for change in his brief life; Jake Glaser is perhaps the most well known advocate. Now a new generation is speaking out; advocates like Paige Rawl and Ashley Murphy have been coming of age and coming to voice. Bowman, too, is committed to advocating for children, youth, and adults living with perinatal HIV infection. According to a 2013 CDC estimate, 9,131 adults and adolescents (ages thirteen and older) in the U.S. are living with HIV acquired through perinatal transmission. Globally, according to 2015 UNAIDS estimates, only seventy-seven percent of women have access to meds that can reduce the risk of mother-tochild transmission; only forty-nine percent of children (fifteen and under) living with HIV have accessed antiretroviral therapy; and 400 children become infected with HIV every day. What does the world not understand about individuals living with perinatal HIV infection here at home? Bowman responds: “I don’t think they recognize us; I don’t think they really realize that we’re still here, which is funny because there’s a documentary [by that name].” Bowman’s friend Grissel Granados, along with John Thompson, released a documentary called We’re Still Here recently. “When you hear people talk about the epidemic we always hear about the MSM community, white MSM, black MSM, about the women of color, black women. We hear about all these other populations,” says Bowman, adding that perinatally infected individuals are often not recognized as long-term survivors. “We are long term survivors and are probably more valid [as A&U • AUGUST 2016

such] because we don’t know anything other than HIV....” Long-term survivors are often erased from the public consciousness, and even, some say, from the radars of AIDS service organizations. Documentaries revisit the 1980s as if this is only past history, but guess what? Some people are still living that history. Born eight days after the first World AIDS Day, Mary Bowman is part of the now. “That’s what they don’t realize, that we’ve never known a world without HIV; it’s always been a part of our lives. It’s been with us from diapers through kindergarten, through family members not trying to sit with us or, you know, we’ve got to figure out why we can’t visit certain family members [because] unbeknownst to us these family members have stigmas, so they don’t even realize that they can let us play with their children,” she says, listing more injustices like being rejected by a dentist because of his AIDSphobia. “We’ve lived through these experiences since birth, through our entire lives. And, so, one, I feel like we have a lot more experience than people really [give us credit for] and, two, our stories are valid, and I don’t think they [are recognized as such]. That’s why I do what I do because I want to create a space for perinatally infected youth and adults to tell their stories because we’re so unrecognized—and that’s not fair.” Bowman points out that the transition from being a child living with HIV to an adult living with HIV can be a struggle. “Once we leave adolescent care they throw us into the adult care world and we don’t know what the hell to do. And, so, that’s not fair either and, of course, we appreciate the fact that we were so coddled as youths and adolescents—for me, it was Children’s Hospital, everything was a one-stop shop.” Shifting from child-centered care to adult-centered care came as a “shock,” she says. “And, so, I fell out of care. We don’t have programs to walk you through that process and there are so many gaps in the program. “It’s like, ‘Okay, now you’re an adult, go on along your way,’ when I didn’t know how to find a doctor; I didn’t know how to figure out insurance, like which doctors took my insurance; I didn’t know I needed a gynecologist, or a dentist, or all of these things to make sure that my HIV stays under control....I had to figure it out for myself and that’s not fair.” Adults who are newly diagnosed positive, suggests Bowman, have a much greater chance at being linked to care and staying in care, thanks to navigators. Children who become adults AUGUST 2016 • A&U

living with HIV often do not have that same type of hands-on support. Now, as Bowman waits for inspiration to strike again, she has realized that she has to take a step back and focus on self-care. “I realized that I’ve given so much of myself to HIV prevention, and poetry, and I haven’t really given the same amount of energy and love to myself...,” says Bowman. When I mention giving and giving, and then not having anything to give to yourself, she continues, “Right, because then you’ll burn out and then who are you helping when you’re burnt out? Nobody. You’re just giving people exhausted energy and that’s not right because people don’t get healed that way.” A recent negative experience made her stop and assess the whole system of HIV prevention, organizations fighting AIDS, and her place in it all. “And, so, now what I’m trying to do is single out a way to impact people in a different way,” Bowman says, mentioning that HIV prevention and care efforts sometimes miss the mark. “I’m not saying that the way that people are fighting against HIV and AIDS is wrong, but I do feel like there has to be a more efficient way to reach the people that people are trying to reach. When I go to these conferences [and other places that are doing outreach], the people who they say they’re trying to reach are never there and [I ask myself ], ‘Well, who are you really talking to? Because if you keep preaching to the choir, these people that are outside these walls are not going to get saved.’ “So if I had to say I’m working on anything that’s what I’m working on—getting myself together so that when I come back into the world I can offer something on a higher level and take my message to the next level, and not just try to be conformed.” Her resistance is relatable. Nobody wants conformity foisted upon them, as a person or an advocate. And conformity probably bristles all but the most traditional poets. Spoken word may at times take up conventional rhyme schemes and regular meters, but its power lies in its flexibility to flow with the particulars of human voices, to adjust, quickly, to the insights bubbling up in one’s heart and the tone of the room. This freedom is why Purpose Over Entertainment follows a business model and is not a nonprofit. “I want to be able to do whatever I need to do to get the message out. I don’t want to be stuck in guidelines or [stifled] because of a particular funder....” I wondered if she has felt boxed in by what other people might expect her to be:

“Mary, the advocate living with HIV” or “Mary, the poet who talks about HIV.” “I have once felt that way. I think now with taking a break and taking a step back I am freeing myself from that feeling because I don’t want to be in a box,” Bowman asserts. “I’m not just Mary the HIV advocate, I’m not just Mary the poet, I’m not just Mary the singer. I’m a lot of other amazing things and, of course, when you touch people, they hold on to you, in that moment. So they want you to be that thing every time they see you and that’s not fair. “And, so, I’m freeing myself from that. So whether or not people want me to be something or not I don’t care. I’m going to still be whoever I want to be and not feel bound by somebody else’s perception of me.” It’s a bit like a band that’s expected to reproduce a popular album over and over, the same sound, the same feeling. Bowman likes my analogy: “Right, which doesn’t make sense because you grow. It’s unreasonable for you to expect me to stay in 2006 when,” she says, creating a hypothetical, “from 2006 on you’d gotten married, had kids, and your whole mentality has changed but because my album touched you in 2006 every album after that has to be the 2006 feeling. That’s not fair—people grow....” Self-definition is crucial for surviving and thriving. “Find yourself and make sure you know who you are and don’t be persuaded or moved by anyone else’s opinions because opinions change. So this person may feel some way about you today based on how they feel about themselves, and that’s not fair for you to conform your whole entire life based on someone else’s opinion—and that’s especially true for people living with HIV. The world will tell you, ‘Oh, well, you can’t have sex, or you can’t love anybody, or you can’t have this particular job, or you can’t do this because you’re positive.’ “No, F that. That’s not fair. I can do whatever I want, especially if I’m taking care of myself and I’m keeping my head down and doing everything that I need to do to make sure that I keep other people safe. So I would definitely encourage everybody to find themselves, sit with themselves, and get to know themselves. Take themselves out on a date, like get to know themselves, and really hold true to that and really try hard not to be swayed by other people’s opinions because they don’t matter in real life.” Truer words were never spoken. Chael Needle is Managing Editor of A&U. He interviewed Sheryl Lee Ralph for the August 2015 cover story.

A&U â&#x20AC;¢ AUGUST 2016

Surviving Still Activist & Singer Jesús Guillén Raises His Voice for Long-Term Survivors by Hank Trout Photographed Exclusively for A&U by Sean Black

orn in Ciudad Valles, SLP, Mexico, in 1960, Jesús Guillén was already an accomplished award-winning actor and singer when he moved to the United States in 1984. Given the choice of moving to either Mexico City or Los Angeles, Jesús chose L.A. to broaden his horizons and to further his acting and singing career. That career, while never abandoned, has taken a backseat to his role as an activist and spokesperson for the LGBTQ Latino community in San Francisco and as a valued representative of the Long-Term Survivors community worldwide. For Jesús, the road to LGBTQ activism took many unexpected turns and curves. While he tried to nurture his career in Los Angeles, Jesús began the process of naturalization to become a U.S. citizen. He faced the usual difficulties that immigrants all face in this country—no “papers,” no available services, blatant racism. “I wanted to become a citizen because I wanted to vote,” Jesús told me. His application for residency was complicated by his being HIV-positive. At the time, despite the amnesty program he hoped to take advantage of, there was still a ban on entry into the U.S. by anyone who was HIV-positive. The residency application required a blood test. Jesús enlisted a friend to take his anonymous blood test for him. “I’m not proud of breaking the law, but what could I do? I did what I had to in order to survive; I did the right thing to stay alive.” Citizenship was granted, but not without a small scare. While still not a citizen, Jesús had been working at a travel-and-touring agency in Los Angeles, where his diligence and productivity earned him an expense-paid trip to Ireland. Although he was excited about taking the trip, he was worried about returning. “All

AUGUST 2016 • A&U

I had was my Mexican passport—I was afraid that I might not get back into the country!” The trip went off without incident, however. When he returned, the U.S. Customs official looked over Jesús’s Passport and asked, “You’re working on your papers, aren’t you?” Jesús meekly answered, “Yes,” and the customs agent waved him on through. Jesús’s sigh of relief still echoes in the corridors of LAX. Although Jesús had already lived in the U.S. for six years when he moved to San Francisco in 1990, it took some time for him to acclimate himself to the different culture here. “Mexico is a culture based on family,” Jesús told me; “Here, no. People seem to be disconnected from their families. They volunteer and join groups to make up for the lack of family.” With that in mind, he helped to found AGUILAS–Asamblea Gay Unida Impactando Latinos A Superarse—to address the unique needs of the LGBTQ Latino community. The name AGUILAS translates to “Assembly of United Gays Impacting Latinos Towards Self-Empowerment.” Today, AGUILAS is a nonprofit organization and the largest gay Latino organization in the San Francisco Bay Area. Among other programs, AGUILAS sponsors El Ambiente, an HIV prevention program created by and for gay and bisexual Latino men. The first time I met Jesús was on the Thursday before Pride Weekend 2015. Along with a couple dozen other folks from Let’s Kick A.S.S., we stood in line at the Castro Theatre before the premiere of the documentary Desert Migration. It was difficult not to see Jesús in the crowd: At six-foot-one, with a shock of bright yellow hair, wearing white pants and a brightly multi-colored blousy shirt accented with a flowy scarf, his rich brown eyes scanning the tops of heads in the crowd, he appeared absolutely

regal, a monarch surveying his subjects, blessing their adulatory remarks by nodding or breaking into a beautiful, infectious grin, often hugging admirers who broke through the crowd to get to him. It was clear that Jesús is revered in this community. As I’ve gotten to know Jesús over the last year, I’ve come to respect the gentle, generous, loving man inside that imposing exterior. “So,” I asked Jesús, “what happened to your acting and singing career when you came to San Francisco?” “Yeah! What happened?!” he laughed. Although he has produced and been the subject of many photo sessions, he hasn’t done much acting here in San Francisco. He has, however, continued singing and composing. Upon arriving, he immediately joined Coro Hispano de San Francisco, the Latino choral group, which has also performed some of Jesús’s compositions. He has sung at the Gay Latino Festival of Music and Art, in Oakland, as well as other music festivals in the Bay Area. Jesús delighted me and other Long-Term Survivors in May when he sang his heart-wrenching anthem “Surviving Still” at a dinner sponsored by Project Open Hand honoring the LTS community. With his deep rumbling bass

voice, he has also done extensive voiceover work for local animators and video game programmers. “My composing and singing have always been an escape for me,” Jesús said. “These days, my activism takes up most of my time, but I still love to sing. And when I can combine my art with my activism, that’s when I feel the best.” Jesús’s activism in the Long-Term Survivors community began about ten years ago. He first got involved with the

San Francisco HIV Planning Commission in 2006. He noticed, though, that most of the discussion in the Commission was about preventing new infections and that, while that was worthy work, the unique needs of people already living with HIV,

and particularly those who had lived with it since the 1980s and ’90s, were being ignored. He traveled as a San Francisco representative to New York City for training at the ACRIA (AIDS Community Research Initiative of America) Center on HIV and Aging. He learned from Hannah Tessema that ACRIA and others in New York were already beginning to address the unique needs of Long-Term Survivors. “When we returned to San Francisco to make our report, no one wanted to hear that someplace else was doing a better job for long-term survivors than San Francisco was doing!” Not one to be deterred by a little resistance, Jesús pushed on, testifying on behalf of Long-Term Survivors at the Board of Supervisors, the HIV Planning Commission, the SF Commission on Aging, the Dignity Fund, and other agencies and community groups. About a year ago, Jesús was Googling information about services available to Long-Term Survivors. He found the group, The Graying of HIV, but not much else. He was frustrated by the lack of any vehicle where Long-Term Survivors could connect and share their stories, their strategies for surviving, etc. Enter Facebook. Jesús set up a private, closed group on Facebook—the HIV A&U • AUGUST 2016

LONG TERM SURVIVORS page. He envisioned a place where the LTS community could meet one another, share their stories of struggle and triumph, seek information from their peers, share news stories about HIV treatments and advances toward a cure, and most importantly, share a communal place where survivors would feel welcome and safe and treasured. He saw the page as a means for survivors all around the world to combat the isolation and loneliness many of us feel, especially those survivors who live in rural areas or in countries where simply being gay is dangerous, who don’t have the opportunity to share experiences and information. “I wanted to set up a page where other survivors could feel welcome and safe; I wanted people who use the page to be able to say, ‘This is my home, this is part of my life, I belong here, I can come here and be welcome and loved.’” In less than a year, as of this writing, the group has grown to over 2,600 members. “I expected that we might draw about 200, maybe 300 members. I had no idea we would grow so big so quickly,” Jesús said. Maintaining the group as a welcoming, safe place for all has been Jesús’s goal from day one. Speaking of the three administrators who safeguard the page, “We reject postings that are overtly sexual in nature, because we don’t want the page to turn into a ‘meat market.’ There are other places for HIV-positive folks to hookup—that’s not us.” And while the page is an ideal venue for survivors to ask each other questions and to seek out survival strategies, members who ask questions regarding medications, symptoms, or other medical issues are instructed to take up the issue with their private physicians. “Any time someone asks a question that begins with ‘Should I tell my doctor about…,’ the answer is ‘YES, talk with your doctor.’” Jesús went on, “Someday, it would be great if we had a staff of people to whom we could refer medical questions, another to whom we can send questions about available services, another where we can refer dating questions or legal questions. But not yet.” “Just what qualifies one as a Long-Term Survivor?” is an issue that often comes up in the discussions on the HIV LONG TERM SURVIVORS page. Five years with an HIV diagnosis? Ten years? Only those diagnosed before the “cocktails”? Aiming to make the group as inclusive as possible, Jesús’s mission statement reads, “This is a group for all people that identify as long-term survivors of HIV/AIDS worldwide.We are open to any gender, race, sex AUGUST 2016 • A&U

and sexual preference.” That definition includes our brothers and sisters who are HIV-negative themselves but who are wounded warriors from the 1980s and ’90s as surely as we HIV-positive folks are. “We have to remember that it wasn’t just HIV-positive folks who fought and lived through the worst years of the epidemic,” Jesús said. “Even HIV-negative folks lost friends and family and lovers just as we did. They suffered the same grief and loss and the same PTSD that many of us suffer from. This is no time to exclude them just because they are negative.” Jesús pointed out one quality of the HIV LONG TERM SURVIVORS page that makes it unique. “The LTS group is a 24/7 thing,” Jesús said. “Other groups—even the great ones like Shanti and Honoring Our Experience and the Elizabeth Taylor 50-Plus Network—they all do great work and sponsor terrific retreats and events. But you go to one of their events, and when it’s over, you’re alone again, the party’s over. But our group is there for people twenty-four hours a day, every day. You can access it when you want to or need to. We have regulars who check in every day, checking up on other members.” As an adjunct to running the HIV LONG TERM SURVIVORS page on Facebook, Jesús has also set up a new project to honor Long-Term Survivors. “We want to make a quilt, this time not to honor our fellow members gone, but to honor our surviving members, meaning you and me, a quilt made of little pieces of an old garment.” The idea is to collect swatches of material from a shirt or blouse from Long-Term Survivors and sew them into a large quilt. No names, no photos, no slogans, just swatches of material from

a garment worn by one of us Long-Term Survivors—literally stitching our DNA into a commemorative piece of art. “We’re asking survivors to mail us a piece of cloth, at least six inches by six inches square, from clothing they’ve worn. We’re hoping to sew together a large quilt that can be displayed to honor our survivors.” Since being profiled in the San Francisco Chronicle’s documentary Last Men Standing [A&U, May 2016], Jesús has been “meeting people at higher levels,” including policy-makers, politicians, movers, shakers, always striving to make use of his time in the spotlight to benefit others. Already he has traveled with the filmmakers to festivals in Portland and Los Angeles; in July, he traveled with Last Men Standing to Durban, South Africa for the XXI International AIDS Conference. “People respect what I’m doing and what I say because they know it’s coming from my heart,” Jesús told me. “I’m not looking for personal advancement, not looking for a job or a career. I do this for my community, for my new family. This is what I can do to make a difference.” You can find the Long-Term Survivors Facebook group at www.facebook.com/ groups/466278376873515/. Jesús encourages all Long-Term Survivors to participate in the LTS Quilt by mailing a 6” x 6” swatch of clothing to Jesús Guillén, 300 Buchanan Street #209, San Francisco, California, 94102. Hank Trout edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-sixyear resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.

lifeguide

C2B

The challenge of B A vaccine to prevent hepatitis B infection has been around since the 1980s, but people still fall through the cracks. Approximately 200 million worldwide are infected with the hepatitis B virus, mainly in Asia and Africa. In the U.S., an estimated 1.5 million are infected. Hepatitis B is mainly transmitted at birth, from mother to child, though it can be transmitted through sexual activity and blood. Hepatitis B is responsible for up to eighty percent of liver cancer cases worldwide. And up to forty percent of hepatitis B patients who acquire HBV early in life are likely to develop serious complications. Hepatitis B is more common than hep C but more difficult to treat, and a cure has remained elusive. Unlike the antiviral medications that cure hep C, antiviral regimens now available for hep B suppress

the infection but don’t cure it. Like HCV, HBV attacks the liver, but its biology is much more complex than HCV. And like HCV, HBV can leave people asymptomatic and unaware of infection for decades, all while doing great damage to the liver. Hep C drugs like Gilead’s antiviral Sovaldi work by inhibiting an RNA polymerase that promotes viral replication. But there’s another hurdle to curing HBV. In addition to viral replication, chronic HBV infections are enabled by the production of antigens that attenuate the host immune response. Cutler adds that HBV also has reservoirs of viral genetic material called cccDNA. The formation and recycling of cccDNA limits the efficacy of current antiviral therapies. In effect, HBV “hides” in liver cells, and has a viral engine that keeps producing more virus all the time. The general consensus in the research community is that a cure for HBV, while difficult to find, is possible. And Arbutus isn’t the only company aggressively pursuing a cure. In February, a San Diego startup, Chromis Therapeutics, raised $3 million in seed financing from Torrey Pines Investment for its work in treating hepatitis B. Chromis’ antiviral mechanisms include cccDNA inhibitors, entry inhibitors and capsid assembly inhibitors. The company says it is developing small molecules that

can reduce or eliminate the cccDNA from the nuclei of infected liver cells, and block reinfection mechanisms. Earlier this year Arrowhead Pharmaceuticals offered mid-stage findings into potential efficacy for its clinical-stage hepatitis B drug ARC-520. The company showed that ARC-520 delivers RNA that blocks messenger RNA to reduce the production of hepatitis B viral proteins. Arrowhead says that using ARC-520 alongside commonly used hepatitis B drug Baraclude delivered a 99.99 percent knockdown in serum hepatitis B DNA, a measure of disease activity. For now Arbutus appears to have a solid lead in the race to find a cure for HBV. According to the company, its lead program, ARB-1467, an RNAi therapeutic, is currently in a Phase II clinical trial in chronically infected HBV patients and initial results are expected later this year. Cutler tells A&U that before the end of 2016, Arbutus plans to file INDs or equivalents for its core protein/capsid assembly inhibitor AB-423 and RNAi agent ARB-1740. And later this year Arbutus will begin a study of ARB-1598, the company’s TLR-9 agonist, to evaluate changes in immune biomarkers in HBV patients. Watch this space for future developments. Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. A&U • AUGUST 2016

illustration by Timothy J. Haines

n 2013, a revolution happened: A drug regimen was developed that could cure, not just treat, patients with the hepatitis C virus (HCV). Since then hundreds of thousands of people have been cured of HCV. Now the race is on to cure hep C’s more complicated and more common cousin, hepatitis B. One of the players in the holy grail of a functional cure for hep B is a familiar name: Michael Sofia, who was behind the creation of sofosbuvir, or Sovaldi. “We’re gunning for a cure,” Sofia told Bloomberg News last year. “With Sovaldi, we clearly brought innovation with the drug’s discovery and getting it to market. We feel we can translate that experience to hep B.” Sofia’s new company, Arbutus, sits in a nondescript office building thirty miles north of Philadelphia. It’s called the Pennsylvania Biotechnology Center. Adam Cutler, the Senior VP of Corporate Affairs at Arbutus, told A&U that Sofia’s success with hepatitis C is informing his approach to a hep B cure. And he said that combination therapy is the key. “We have assembled a pipeline of several programs with different mechanisms of action. Pursuing these programs under one roof allows for preclinical and clinical evaluation of different combinations with the goal of developing combination treatment regimens that generate improved cure rates for HBV patients.”

the success in curing hep c fuels race to cure b

lifeguide

Working Toward Balance

here’s been lots of talk recently about the importance of microbes on multiple aspects of health. HIV is no exception and more and more research is showing just how big of a role these little invisible bugs actually play. Microbes are bacteria, fungi, and viruses of which trillions live on our skin and within our bodies. These microbes reside in colonies called the microbiome (or microbiota) which can be found throughout the body, including in our gut, mouths, sexual organs, and lungs. The microbiome naturally maintain a healthy balance of microbes, but many factors such as disease, stress, medication, and even the food we eat, can tip this balance, allowing for harmful bacteria to take hold. A disruption of the microbiome balance can have serious effects on the entire body. Trans microbial location and dysbiosis are two important issues when discussing the microbiome and HIV. Trans microbial location occurs when damage from HIV breaches the intestinal lining, allowing bacteria that is usually contained within the small intestines to enter the blood stream. The immune system responds by attacking this bacteria, creating damaging inflammation. Research indicates that this inflammation may lead to conditions such as cardiovascular disease and neurocognitive disorders. Dysbiosis is an unhealthy disruption of the microbial balance, which can lead to illness and further trans microbial location. Numerous studies are being conducted to bolster our knowledge and understanding of the human microbiome and to determine potential interventions. Two currently enrolling studies may help us gain insight to potential treatment options that may help restore a microbial balance and begin to answer questions of what effect that might have on conditions that affect HIV-positive people. Probiotics: Visbiome Probiotic formulations contain various strains of bacteria known to be beneficial. Probiotics have been found to be helpful in disorders such as irritable bowel syndrome and Cohens disease, and may reduce microbial translocation and dysbiosis in HIV-

Jeannie Wraight

research into treating the effects of microbes gains steam

positive people. Each probiotic supplement contains different strains of bacteria. So which probiotic is the right probiotic for a person living with HIV? The AIDS Clinical Trials Group is looking at a specific probiotic that may hold potential. According to ACTG PI Adriana Andrade, MD, MPH, FACP, Associate Professor of Medicine at Johns Hopkins, “The formulation in Visbiome has been demonstrated to replete the CD4 cell population in the gut of SIV-infected macaques which were administered the probiotic blend. Furthermore, inflammation in the gut was markedly decreased with the formulation administration. Given these results and human studies demonstrating the benefit of the formulation found in Visbiome to improve bowel symptoms in inflammatory bowel diseases, this probiotic has the potential to positively impact HIV disease outcomes.” A ninety-person study is currently enrolling to determine if Visbiome (made by Exegi) can: • reduce systemic inflammatory markers • increase microbe diversity in the gut microbiome • improve immune function in the gut For information on this study go to: http://bit.ly/29QaB9G. Ecobiotic drugs: SER-109 SER-109 is an ecobiotic drug which works to restore healthy microbiome ecology and function. SER-109 is being studied to combat reoccurring Clostridium Difficile (also known as C. Diff or C. difficile) a pathogenic infection that causes, among other symptoms, extensive watery diarrhea. C. Diff is greater than two-fold more common in HIV-positive individuals than in the general population and can be deadly in people who are immune-compromised or elderly. C. Diff can occur from the use of antibiotics and is more common before or after hospital stays, but it is believed that HIV may cause alterations in fecal microbiota, gut mucosal integrity, and humoral and cell-mediated immunity that may contribute to its higher occurrence.

Dysbiosis is believed to be the underlying cause of C. Diff. C. Diff is commonly treated with antibiotics which in turn can worsen dysbiosis, leading to further occurrences of C. Diff. SER-109 is a being studied as a treatment for C. Diff and works to restore a healthy balance in the intestinal microbiome, reversing dysbiosis. In a Phase Ib/II study of SER-109 in thirty individuals with recurrent C Diff. (three or more occurrences in a ninemonth period of time), ninety-seven percent of participants achieved a clinical cure of C. Diff, defined as an “absence of CDI [C. Diff] requiring antibiotic treatment during the eight-week period after SER-109 dosing.” An ongoing Phase II placebo-controlled study called ECOSPOR, which does not exclude HIV patients, is currently enrolling. SER-109 is a first-in-class microbiome therapeutic that utilizes bacterial spores from healthy donor purified stool which facilitates re-colonization of the microbiome. Although an effective treatment for C. Diff is important, the utilization of SER-109 may surpass C. Diff alone if it is found to control dysbiosis, potentially offering a wider benefit to people living with HIV. For more information, please see: http://bit.ly/2a6lR7P. 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 • AUGUST 2016

illustration by Timothy J. Haines

MAIN EVENT AT CENTRE PIERRE-CHARBONNEAU (OLYMPIC PARK) Sunday October 9th, 10 :00 PM till 10 :00 AM | Tickets and Week-end passes on sale : bbcm.org

E R U T CUL S THE

AID OF

BOOKS Words Never Spoken/ One Thing for Certain, Two Things for Sure by Craig Stewart Impeccable Works

“A

n unexamined life is not worth living,” declared Socrates at his trial. That philosophy may not have worked out for him (after all, the trial ended with his drinking a hemlock cocktail); but it’s good advice for writers, as playwright Craig Stewart’s Words Never Spoken shows. Being honest in a memoir isn’t easy. There’s always the temptation to touch yourself up a bit, to practice evasive maneuvers—in short, to turn non-fiction into fiction. Not Stewart. He doesn’t Photoshop his life or his prose. “One of the best parts of life is when you can admit the truth to yourself about yourself,” he reflects at one point. So we get it all—his “flirting with the law” in college; anonymous sex with men he meets online; and the de-

pression that shadows him as he wrestles with being gay. “The depression I experienced was rooted in sex,” he says, “but it wasn’t just about the depression. It was years of suppression and denial erupting.” After college, Stewart does begin acting on his feelings and dating “aimlessly in search of a real connection.” But he is too eager: “I was acting on unresolved feelings. I was looking for a connection, but was still unsure how I felt about being gay.” He would’ve done better, he realizes now, to “have done more soul searching to allow my feelings to catch up with my thoughts.” Stewart is not living with HIV, but some of his friends in the book are. The most poignant section involves his relationship with Saleem, who contracts the virus from an abusive ex-boyfriend. Stewart is determined to stand by him: “Saleem was the person I grew to love without confusing lust for love.” Saleem, however, doesn’t want to take the relationship any further because “[y]ou’re just starting out. I can’t do that to you. That wouldn’t be fair to you.” Later, when it’s all over, Stewart reflects, “Saleem’s spirit was crushed once he learned he was HIV-positive…. No matter how hard he tried to be happy, I knew he carried that burden. It was visible each time we saw each other. He told me once that I was a reminder that he was positive whenever he saw me.”

But Saleem becomes part of the writer’s inspiration for his first play, A Day in the Life. The play deals with six different characters who are wrestling with orientation or gender issues. It is Stewart’s attempt to raise public awareness about HIV/AIDS in the Black community. Words Never Spoken focuses considerably on Stewart’s coming to terms with who he is and the relationship hazards he meets along the way. But it’s also about his journey as a writer and the evolution of his play. The journeys are entwined, and despite the book’s title, he conveys a lot of emotional truths and conveys them well. One Thing for Certain, Two Things for Sure picks up with Stewart feeling “a tugging in my spirit” and leaving Atlanta’s “oversaturated gay scene that felt more like two degrees of separation rather than six.” He heads to Los Angeles, hoping to get away from the ex-lovers and memories and to really get his writing career moving. L.A. doesn’t really pan out. But it does give him “the kind of isolation I needed for introspection….I concluded that I was once the broken, confused man who got emotionally tangled with A&U • AUGUST 2016

gay men, who were ready for love, only to leave them holding their heart in their hands because I wasn’t ready to live my truth.” But that’s only one part of the problem: There is another part of him that’s caught up in the hero syndrome, trying “to save the men I dated from their brokenness.” In other words, he is nailing himself to his own cross emotionally, and he realizes that it’s time to break the pattern. But the universe, he finds, isn’t through testing him. He returns to Atlanta about a year later, only to find himself falling for a guy he has met on the Internet. Rocky, who works for the U.S. government in Dubai, is everything that the writer has been looking for: intelligent, funny, and thoughtful. He’s also married to a woman despite his love for men. But the rapport is so very strong—and so very unlike anything that Stewart has ever known—that he’s doing the head-over-heels thing before he realizes it. One Thing for Certain, Two Things for Sure is an even more intense book than its predecessor and engages us completely. There’s a world of raw emotion here, and we are swept away by it, no matter what our orientation. Now, that’s powerful writing. —T.J. Banks

Conflict is Not Abuse by Sarah Schulman Arsenal Pulp Press

n her new non-fiction offering, Sarah Schulman explores how circumstances of conflict in modern society often become the catalyst for the exploitation and abuse of the oppressed. She speaks initially of two recent murders of unarmed young Black men by law enforcement, the beating of the wife of an NFL player by her husband, and the oppression of the Palestinian people by Israel: “From the most intimate relationships between two people, to the power of the police, to the crushing reality of occupation, these actors displayed distorted thinking in which justifiable behavior was understood as aggression.” Schulman approaches her topic from a queer, feminist, female perspective and states so clearly. This informs her viewpoint, and

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only serves to strengthen it. Schulman not only documents oppression, however; she looks to resolve it through dialogue and perspective on both sides: “I am interested, in this book, in examining the phenomenon of overstating harm where it begins in the earlier stages as conflict, before it escalates and explodes into tragedy.” She believes that it’s at the initial stages of conflict where a difference can be made before it erupts into something out of the ability of both parties to control. Schulman was on the front lines of the early AIDS crisis and speaks with much truth about how our community was completely marginalized and ignored as its members were dying in great numbers. Those who fought against this injustice, including Schulman, were also criminalized. This gives the author much authority in commenting on HIV criminalization in Canada, which she does in order to explore her thesis. In Canada, a progressive state whose sodomy laws were overturned long before those of the U.S., the state conflates abuse with living with HIV resulting in the unreasonable punishment of its citizens. A person can be prosecuted even when they have engaged in safe sex. Canada is one of the top ten countries in the world for HIV-related arrests and a large percentage are prosecuted and serve jail time. The numbers are disproportionately

higher for Black men. Schulman not only looks at the problem in her book, and the problem is daunting, but she also breaks it down and explores solutions. The solution in these matters greatly lies at taking an honest and straightforward look at the things that divide us in our modern

world. It’s with a long, hard, honest look that we can begin to address the conflict that divides us and leads to our abuse of each other. —John Francis Leonard T. J. Banks is the author of Sketch People, A Time for Shadows, Catsong, Houdini, and other books. Catsong was the winner of the 2007 Merial Human-Animal Bond Award. John Francis Leonard writes A&U’s monthly Bright Lights, Small City column.

A Calendar of Events

roadway fanboys and fangirls, get out your calendars! The thirtieth annual Broadway Flea Market & Grand Auction will soon pop up on in the heart of Manhattan’s theater district. The free, once-a-year theater bazaar is produced by and benefits Broadway Cares/ Equity Fights AIDS. Last year, the event raised a record-setting $756,655. Over its nearly three decades, the event has raised $11.8 million. Broadway Cares/Equity Fights AIDS is “one of the nation’s leading industry-based, nonprofit AIDS fundraising and grant-making organizations. By drawing upon the talents, resources and generosity of the American theatre community, since 1988 Broadway Cares has raised more than $285 million for essential services for people with AIDS and other critical illnesses across the United States.” Expect to find one-of-a-kind show props, tickets to opening night performances, posters, customized music mixes, and autographed musical phrases, among other items, for bidding or buying. An autograph table and photo booth, situated on the out-

door deck of Junior’s restaurant and featuring Broadway stars, will offer incredible keepsakes for fans (performers in attendance will be announced in September). Additionally, the goodies are divided into tables based on show or type of creative professional. And very frequently at this event performers will delight the crowds with an impromptu song. Date: September 25; time: 10 a.m.–7 p.m., new silent auctions start every thirty minutes throughout the day; the live auction begins at 5 p.m.; location: West 44th Street, between Seventh and Eighth Avenues, and Shubert Alley, New York, New York. For more information, please visit Broadway Cares online at broadwaycares.org, at facebook. com/BCEFA, at twitter.com/BCEFA, at YouTube. com/BCEFA and at Instagram.com/BCEFA. Follow on social media via #BroadwayFlea.

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Marianne Williamson

“My life works when I practice what I preach,” she declares, her saucer-dark eyes penetrating mine. “As a student of A Course in Miracles, we only get to keep what we give.” Living through the AIDS crisis, Williamson persevered in the trenches, creating solidarity. “Life was at its most raw back then. Life was at its most real. Life was at its most cruel. And, life was at its most miraculous. All at the same time.” She tosses her hair behind her ear and props her foot up on the side of the coffee table. “I think that life is a book that never ends. One incarnation is one chapter. There’s a chapter where you’re incarnate and a chapter where you’re disincarnate. I think that people who have crossed over beyond that veil are still broadcasting. We just don’t have a set that picks up that channel,” she offers. “I think the resurrection is the opening of the inner eye to the realization that people are still here. As we evolve spiritually, we will see so much light around each other that when we’re told of one’s death, all it will mean is that a shadow is gone. We will have evolved to a point of higher frequency of communication. Most of us have little glimpses of this. I do think we’ll get there as a species. A Course in Miracles says there will come a time when the idea of someone’s death will not bring sorrow to anyone.” Marianne smiles, touching my hand and remarks, “It’s something to think about. After having lived through the AIDS crisis, to know people who didn’t make it past twenty-five or thirty-five. The gratitude of knowing that some of us got to go to the party and wanting our older years really to be the wiser years, passing along the stories so that other generations can do what they can with it,” she pronounces profoundly, which gives pause for thought.

“It’s unfortunate that there seems to be a younger generation who are getting infected. They don’t have the historical memory. Too many of us who have the historical memory aren’t speaking up enough. Every generation really does stand on the shoulders of the proceeding one. The point is to thrive. “Most Americans have no idea what it means to have to survive something. People with HIV do, but most Americans don’t seem to have a clue what the majority of people on this planet have to live with all day long.” The phone rings. Marianne answers. It’s Crista, her assistant, who’s just arrived in the lobby. “Tell her to please wait. Thank you,” says the activist, who recently released her thirteenth book, Tears to Triumph, about facing pain and transcending suffering. I ask what mark the AIDS crisis left. She responds at once. “The gay community in America has a lot to be proud of. Look at the Human Rights Campaign [HRC]. If it hadn’t been for AIDS, none of that would have happened. There was a lot of political awakening from the epidemic, as well. I remember the beginning of the HRC. It grew into such a stunningly organized…,” she halts, not completing her thought then sums up, “Gay marriage would not have happened. And that was all from political strategizing. “Another point of light to surface from the darkness is the emergence of the holistic medical model—the ‘integrative approach’—that came directly out of the AIDS crisis. The U.K. and other countries were ahead of us. When AIDS occurred, Western medicine said there was nothing they could do. It’s not that they weren’t trying or that they didn’t care. They had no other cards to play. I don’t doubt how hard they were working,” she expounds. “People just didn’t say, ‘Oh, I’ll just go home and die now.’ That’s when people started participating, such as in spiritual support groups like myself, Louise [Hay], or others.” Marianne concentrates, clears her throat. “There is statistical verification of the fact that people with life challenging illnesses who attend spiritual support groups live on an average twice as long after diagnosis. In those days, this kind of work was trivialized, even mocked.” Williamson’s sister, who had cancer at the time, advised her to ask her oncologist what he thought about her joining a spiritual support group. Her doctor tartly replied, “What medical school did your sister go to?” Marianne believes that oncologists would be more open today. “This new way was first called ‘alter-

native medicine,’ then ‘complementary medicine’ and it finally landed at ‘integrative medicine,’” informs Williamson. “It’s because so many people were looking for something, at least complementary to the medical model, at a point when the allopathic medical model had nothing to offer. This came out of the crisis.” Marianne takes a sip of tea, glancing out the clapboard Mediterranean shutters onto the patio that overlooks Wilshire Boulevard. “The AIDS crisis taught me that the spiritual path is more than ‘I can get whatever I want.’ Concentrating on lack, what you don’t have is a diseased mentality. Buddha said, ‘It’s your attachment to getting something, that is your suffering.’” Marianne elaborates: “Your suffering is not going to end when you get it. The suffering is going to end when you are no longer attached to getting it, which by the way, is when it comes. Forget about it…and you can have it,” she notes soundly in a timbre reminiscent of Lauren Bacall. “Before I met you, I had lunch with a friend. After this interview I will meet with Crista [her personal assistant], and then give a talk tonight. It’s all the same. Each thing is perfectly planned for the maximum growth opportunity, not only for myself but everyone else involved,” Williamson emphatically enforces. “In the human body, cells have a natural intelligence by which they collaborate with each other. When a cell disconnects from that intelligence and just seeks to go off and do its own thing, that’s malignant. It’s malignant in the body and it’s malignant in consciousness. That’s what has happened to the human race. We’ve been infected with a malignant consciousness where everybody’s out to do their own thing: What can I get instead of what can I give? “Twelve-thousand children are starving everyday and we have such horrifying irresponsible environmental policies….” Marianne freezes in frustration. She takes a breath and momentarily places her finger between her teeth. “These horrors are the manifestation of our present state of consciousness. Through the growth and evolution of our collective consciousness, we can eradicate these horrors, including disease. AIDS was a situation where people finally woke up and said,” Marianne hesitates for effect. “‘We…must…do…something!’” For more information about Marianne Williamson, log on to: www.marianne.com. Dann Dulin interviewed singer/songwriter John Grant for the July cover story. A&U • AUGUST 2016

AUGUST 2016 â&#x20AC;¢ A&U

Survival Guide

[a portrait by sean black]

Matthew McLean “The fight against HIV/ AIDS is far from over, in spite of the advanced treatments available. It saddens me that in this day and age, the stigma and shame, both socially and within one’s own tortured soul, have taken yet more lives of close friends, right before my eyes. I cannot and will not sit idly and watch any more of my friends and fellow community members succumb to the shame and stigma that will prevent them from addressing their own HIV health. SHAME = DEATH. Fight the stigma and fight the virus.”

Matthew McLean has been an HIV/AIDS activist and contributor for nearly a decade. He has worked with the Long Beach AIDS Foundation and The Life Group LA, both of which before his own diagnosis in 2010 from accidental exposure. In the eight consecutive years that Matthew has raised funds for the Life Group LA by attending Saddle Up LA, he has amassed over $60,000, enough to fund the entire organization for an entire year. Matthew is looking forward to continuing to raise funds and awareness by reaching out to other organizations in the future to improve standards and increase resources needed to fight the stigma and end the virus. Sean Black is a Senior Editor of A&U. 64

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