A&U September 2018 by A&U: America's AIDS Magazine

SEPTEMBER 2018 • ISSUE 287 • AMERICA’S AIDS MAGAZINE

ACTS OF RESISTANCE

• David Mixner • Naina Khanna • Josué E. Hernández

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Artist David Zaintz Alliance for Positive Change • Fiction by James Magruder • San Francisco Lesbian/ Gay Freedom Band • Dancer Alan Ramírez

brian

SIMS

Champions Access to All HIV Prevention Tools

What is BIKTARVY®? BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults. It can either be used in people who 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. BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about BIKTARVY? BIKTARVY may cause serious side effects: } Worsening of hepatitis B (HBV) infection. If you have both HIV-1 and HBV and stop taking BIKTARVY, your HBV may suddenly get worse. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to monitor your health.

Who should not take BIKTARVY? Do not take BIKTARVY if you take: } dofetilide } rifampin } any other medicines to treat HIV-1

What are the other possible side effects of BIKTARVY? Serious side effects of BIKTARVY may also include: } Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY. } 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 BIKTARVY. } Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death.

Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. } Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (5%), and headache (5%). 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 BIKTARVY? } All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection. } All the medicines you take, including prescription and over-the-counter medicines, antacids, laxatives, vitamins, and herbal supplements. BIKTARVY and other medicines may affect each other. Keep a list of all your medicines and show it to your healthcare provider and pharmacist, and ask if it is safe to take BIKTARVY with all of your other medicines. } If you are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking BIKTARVY. } 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.

Ask your healthcare provider if BIKTARVY is right for you.

Please see Important Facts about BIKTARVY, including important warnings, on the following page.

Get HIV support by downloading a free app at MyDailyCharge.com

KEEP EMPOWERING.

Because HIV doesnâ&#x20AC;&#x2122;t change who you are. BIKTARVY is a 1-pill, once-a-day complete HIV-1 treatment for adults who are either new to treatment or whose healthcare provider determines they can replace their current HIV-1 medicines with BIKTARVY.

BIKTARVY does not cure HIV-1 or AIDS. BIKTARVY.COM

IMPORTANT FACTS

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

(bik-TAR-vee) MOST IMPORTANT INFORMATION ABOUT BIKTARVY BIKTARVY may cause serious side eﬀects, including: • Worsening of hepatitis B (HBV) infection. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without ﬁrst talking to your healthcare provider, as they will need to check your health regularly for several months.

ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults. It can either be used in people who 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. BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. Do NOT take BIKTARVY if you also take a medicine that contains: • dofetilide • rifampin • any other medicines to treat HIV-1

BEFORE TAKING BIKTARVY Tell your healthcare provider all your medical conditions, including if you: • Have or have had any kidney or liver problems, including hepatitis infection. • 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-thecounter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that interact with BIKTARVY.

POSSIBLE SIDE EFFECTS OF BIKTARVY BIKTARVY can cause serious side effects, including: • Those in the “Most Important Information About BIKTARVY” section. • Changes in your immune system. • New or worse kidney problems, including kidney failure. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. • The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (5%), and headache (5%). These are not all the possible side effects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.

HOW TO TAKE BIKTARVY Take BIKTARVY 1 time each day with or without food.

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

BIKTARVY, the BIKTARVY Logo, DAILY CHARGE, the DAILY CHARGE Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2018 © 2018 Gilead Sciences, Inc. All rights reserved. BYVC0047 06/18

c o n t e n t s September 2018

34 Cover Pennsylvania Representative Brian Sims Talks with A&U’s Chip Alfred About His Fight for HIV Prevention Access, LGBTQ Equality & Pay Equity for Women

Departments

Features 6

Frontdesk

Digital Footprints

27 Fiction Nightstand by James Magruder

NewsBreak

28 Gallery Award-Winning Artist David Zaintz Confronts AIDS with Color & Sensuality

Second Acts

Brave New World

Our Story, Our Time

For the Long Run

32 PREP for Life Advocate Sharen I. Duke Fights for Low-Income New Yorkers Impacted by HIV

Just*in Time

Bright Lights, Small City

14 Ruby’s Rap Ruby raps with Alan Ramírez

40 Marching On The San Francisco Lesbian/Gay Freedom Band Celebrates Forty Years of Founder Jon Sims’s Legacy 44 An Activist’s Journey David Mixner Details How His Life in Non-violent Activism Intersects with the Fight Against AIDS cover photo by Holly Clark

viewfinder

lifeguide 48

Treatment Horizons

Positive Justice

Access to Care

Destination: Cure

The Culture of AIDS

Lifelines

Survival Guide

HIV

TREATMENT

WORKS

“You do not have me, HIV. I have you.” Tommy

Living with HIV since 2010.

Yes, I am living with HIV, but it does not define me. I was able to move forward after my diagnosis with the support of my family and a great network of friends. They gave me the strength to start treatment right away and focus on my health. Taking those steps has made all the difference. Today, I’m living well with an undetectable viral load. My continued success inspires me to give back to my community by helping break HIV stigma every chance I get.

Get in care. Stay in care. Live well. cdc.gov/HIVTreatmentWorks

A&U Frontdesk

Simple Truth

ometimes we become weighed down by the complexities of life, and, in particular, the intricate challenges we face as we navigate life with HIV/ AIDS. It’s a falsity though to think that the solutions to these challenges have to always be equally complex. After all, a knot is an almost impenetrable bundle until we unravel it into two plain laces. Take, for example, Undetectable=Untransmissible, or U=U. Advocates, led by Bruce Richman and Prevention Access Campaign, took the complex science around suppressed viral load and sustained treatment and winnowed it down to a slogan that simply and clearly tells everyone that staying on top of one’s health is an act of self-empowerment. The slogan simply and clearly conveys the fact that positive bodies (no matter one’s viral load) are not receptacles for society’s animus. And the slogan also reminds that Treatment is Prevention. The media was not telling it straight, and neither were physicians—the messaging from these quarters could have been so simple, and destigmatizing, but it became unnecessarily clouded and overly cautious. Simplification is often the best solution. As a Representative in the Pennsylvania legislature, Brian Sims faces complex problems all the time, and one of his strengths is his straightforward leadership. He advocates for gender pay equity with stunning directness, for example. And I like the fact that he wants to make everything related to accessing HIV prevention tools easier. Of course, making everything easier is hard work. But it’s a goal we should strive for. When Editor at Large Chip Alfred interviewed the Democratic representative for this month’s cover story feature, Sims stated, “I want PEP and PrEP as readily available as birth control. When my doctor

AMERICA’S AIDS MAGAZINE issue 287 vol. 27 no. 9 September 2018 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner

talks to me during an intake about my sex life and the precautions I’m taking or not taking, I want him to make a risk assessment that says, ‘Brian, you might want to consider going on PrEP.’ I want it to be that simple.” And it really should be. Yes, we are ready for “simple.” And I am talking about more than simplifying regimens, though if you are interested Chael Needle shares some updates from ViiV Healthcare in Treatment Horizons. No, I am talking about simplicity in all aspects of our lives. Activists like David Mixner, who was interviewed by Mel Baker for this issue, know the importance of simplicity as well. He has a simple message: Stick by your principles! Sharen I. Duke, Executive Director and CEO of Alliance for Positive Change, talked to Arts Editor Alina Oswald about graduates of the organization’s peer education program, who embody the mission of the organization: “feel better, live better and do better.” Quite simply, Duke has found, their clients pay it forward. Guest columnist Josué E. Hernández learned to say the most difficult words for some who are newly diagnosed: “I am HIV-positive.” But when he did say that simple declaration, his advocacy became richer. He started to fully model the empowerment he wanted others to experience, as well. As the British poet William Wordsworth said, “How many undervalue the power of simplicity! But it is the real key to the heart.” I encourage all of us in the HIV community to embrace simplicity—not as a denial of the complex challenges we face, but as a way to nurture ourselves in the best way that we can. Tell yourself what you need to hear—and don’t overthink it!

DAVID WAGGONER

Managing Editor: Chael Needle Senior Editors: Dann Dulin, Sean Black Editors at Large: Chip Alfred, Hank Trout Special Projects Editor: Lester Strong Arts Editor: Alina Oswald Poetry Editor: Noah Stetzer Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, T.J. Banks, Larry Buhl, Ruby Comer, George M. Johnson, John Francis Leonard, Candace Y.A. Montague, Connie Rose, David Rosenberg, Corey Saucier, Stevie St. John, Justin B. Terry-Smith, Patricia Nell Warren, 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, Michael Kerner, 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 122102743, 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. ©2018 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 122102743, USA

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Danez Smith, A&U’s August cover story subject, inspired the writer themself to comment about the creative shoot by Brent Dundore: “I’m the new cover story at A&U Magazine, but inside they let me do this!” Over 3,000 Instagram followers agreed!

@AmericasAIDSMagazine 8

As part of our ongoing guest column, Second Acts, which features the voices of long-term survivors, Harry Breaux offered a sobering call to action about how we need to reinvest in fighting for our rights. Breaux writes: “There is a life here still, but it has been gutted by the betrayal of my country in its response to AIDS. I, and those like me living the ‘surviving’ game, no longer are certain that the rights and privileges we fought so hard for will not be taken away.” Time will tell if we will heed this warning!

mostshared Our annual summer reading issue and, in particular, our Christopher Hewitt Award selections proved to be what readers wanted. The August issue is available nationwide of course, but it is also online at www.aumag.org. We have outstanding winners in all four categories—poetry (Greg Casale), fiction (John Whittier Treat), nonfiction (Andrea Laiacona Dooley) or drama (Daniel Hurewitz)—and, because our Positively Literary archive is full of great literature, we encourage you to dive in. Nurturing your mind and heart with some literature is a great self-care practice.

@au_magazine

Smith photo by Brent Dundore; Breaux photo by Dave Hall

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@au_americas_aids_magazine A&U • SEPTEMBER 2018

NNewsBreak EWSBREAK At the International AIDS Society 2018 conference in Amsterdam, The Netherlands, in July, Erwin Kokkelkoren, Artistic Director and Writer, Bert Oele, Producer, and the other creative folks at Les Enfants Terribles premiered ATLAS2018, a vast multimedia project giving a face and voice to people living with HIV/AIDS in fourteen countries on six continents. In the historic center of Amsterdam, Beurs van Berlage, ATLAS2018 comprises a unique exhibition with hundreds of films, photos and written stories of men and women who are living with HIV or AIDS. The filmmakers visited all six continents to interview a wide variety of men and women living with HIV/AIDS—as their website says, “teenagers, truck drivers, sex workers, gay men, the transgendered, drug users, children, long-term survivors and others”—to create a worldwide portrait of HIV/AIDS in 2018. For two weeks— July 22 through August 2, 2018—ATLAS2018 presented speakers, talk shows, discussions, live recordings, and parties, in addition to daily screenings of the new documentary I will speak, I will speak! The centerpiece of ATLAS2018, this documentary features women and men living with HIV in Zambia, Cambodia, South Africa, Russia, Germany, and the United States (George Kelly, of San Francisco) telling their very personal stories of living with the virus. There were also showings of The Time There-After, a 2013 documentary produced by Willem Aerts and Erwin Kokkelkoren about 30 years of HIV/AIDS in The Netherlands, and Last Men Standing [A&U, May 2016], a film by the San Francisco Chronicle detailing the lives of eight long-term HIV survivors in San Francisco. Erwin Kokkelkoren, one of the founders of the production company Les Enfants Terribles, is an actor and writer who has worked extensively throughout Europe and in New York. His partner Bert Oele is a director and producer, who previously had a long career in psychiatric healthcare. The last ten years he has produced several major projects for Les Enfants Terribles. Both are long-time HIV survivors. They are understandably proud of the documentary, I will speak, I will speak! “[The documentary] is very much a community project,” Kokkelkoren told Left to right: Erik Smits, Erwin Kokkelkoren, Bert Oele, A&U. “It’s a miracle, the result of a lot of hard work with the best team ever we and Willem Aerts worked with,… [We made] ten visits to all the corners of the world, visiting the HIV community in their own houses, city… [held] discussions at the kitchen table… Getting close to get a personal, but at the same time broad perspective….I find that crucial, we are all so much more than just a virus.” When asked what he hopes the ATLAS2018 exhibit will accomplish, Erwin said, “I hope our work will spread respect. HIV is a virus; there’s no reason to hate us or discriminate against us, as we’ve seen too many times in Africa and other places. “A cure is for doctors and scientists, but it would be nice if we can add information, and hopefully, add a little bit to the humanization of our community, especially where it’s most needed, Africa, Russia, and other places.” To kick off the project, the sponsors invited all PLHIV attending IAS2018 to join them on Sunday, July 22, at Dam Square for a photo—“The most positive picture of the year,” according to organizers. From there, the group proceeded, led by bagpiper Eric Windhorst, to the Beurs van Berlage for the official opening of the exhibit. For more information about ATLAS2018, visit their website: www.atlas2018.org.

A&U • SEPTEMBER 2018

photos by Erik Smits

ATLAS2018 Maps the Global Reach of AIDS

newsbreak Housing Works Merges with Bailey House Two powerhouse ASOs in New York City have announced a merger that, when completed, will create one of the largest comprehensive HIV/AIDS service providers in the City. Housing Works, the nation’s leading HIV/AIDS advocacy and service organization with a chain of well-known businesses in New York City, founded in 1990 as an outgrowth of ACT UP, announced its merger with Bailey House, the nation’s first HIV/AIDS supportive housing provider which, since 1983, has also provided housing and other services for marginalized New Yorkers. The new entity arising from the merger will retain the Bailey House name while expanding services, including primary medical care. Housing Works will also extend its Federally Qualified Health Center to incorporate Bailey House’s behavioral health program in East Harlem. In a written statement, Daniel W. Tietz, CEO of Bailey House, said, “This partnership provides us the opportunity to jointly develop new, ground-up supportive and affordable housing under the Bailey House brand. Together, we will help more low-income New Yorkers achieve the best possible health by expanding housing, healthcare, and behavioral health services.” Charles King, co-founder and CEO of Housing Works, said, “Gina Quattrochi was a dynamic and creative force in the response to the AIDS crisis,” speaking about the long-time leader of Bailey House who died in late 2016. “This pairing builds on her legacy of vigorous advocacy on behalf of New Yorkers living with and affected by HIV/AIDS and continues the evolution of the Bailey House mission.” For more information visit www.housingworks.org and www.baileyhouse.org.

photo courtesy Prevention Access Campaign

PARTNER2 Study Further Confirms “U Equals U” On Wednesday, July 25, 2018, at the International AIDS Society Conference in Amsterdam, The Netherlands (IAS2018), researchers presented the results of the PARTNER2 Study, confirming that viral suppression prevents HIV transmission in serodifferent gay male couples. Building on previous studies, including the PARTNER1 Study and Opposites Attract, the PARTNER2 study sought to provide precise estimates of the risk of HIV transmission during condomless sex among serodifferent gay male couples (i.e., one partner is HIV-positive, the other is HIV-negative) when the HIV-positive partner’s viral load has been rendered undetectable through antiretroviral treatment. Previous studies had found no cases of HIV transmission in these kinds of couples, but the amount of statistical confidence available had remained smaller than that for heterosexual couples. The PARTNER2 results showed conclusively that despite almost 75,000 condomless sex acts, there were zero cases of HIV transmission between the partners. Alison Rodger of University College London reported that these results indicate a precise rate of zero for within-couple HIV transmission. The study enrolled 972 serodifferent gay couples in fourteen European countries. Couples were eligible if they reported condomless sex, if the HIV-negative partner did not report using pre- or Carl Dieffenbach, Bruce Richman, Alison Rodger, Mike Cohen, post-exposure prophylaxis (PrEP or PEP), and if the HIV-positive partner and Pietro Vernazza at AIDS 2018 was virally suppressed. Matthew Hodson, the Executive Director of NAM aidsmap, the HIV/AIDS information resource, remarked to A&U, “IAS2018 will be remembered as the conference when ‘U Equals U’ moved from being an activist rallying cry to the scientifically established position. HIV stigma remains a public health crisis resulting, in extreme cases, in murder and suicide. It should be a public health duty to inform all of us who are living with the virus, and all of those whom we encounter, that effective HIV treatment prevents transmission. “The knowledge that U equals U… offers freedom from the fear of passing the virus on to those that we love and those that we desire [and] has the power to encourage people to test and to remain adherent to their treatment. [It also] gives us the impetus to demand viral suppression as a right for all people living with HIV. “This is the moment when facts must conquer fear. This is the moment when science must trump stigma,” he concluded. Bruce Richman, Founding Executive Director of the Prevention Access Campaign, the powerhouse behind U=U, also had high praise for the study. “PARTNER2 provided even more evidence on top of overwhelming evidence to support U=U. It was the frosting on the cake. [It] closes the chapter on whether MSM anal sex is any riskier than vaginal sex.” Richman had especially high praise for Alison Rodger. He told A&U, “Alison Rodger did something so unusual and wonderful. At the end of her press conference and presentation, she confirmed that the research supports U=U and acknowledged the Prevention Access Campaign for our work to ensure the body of evidence reaches the public. That meant so much to my colleagues and me. It was so respectful. And she put the data into a real-world context. This is above and beyond what researchers typically do. I’m so grateful to her and the partner executive committee.” For more information about NAM aidsmap, please check out www.aidsmap.com. More information on the U=U campaign can be found at www.preventionaccess.org. To view Mr. Richman’s question to Ms. Rodger at her press conference, and her response, go to: http://bit.ly/2n2jXrY. —Reporting by Hank Trout SEPTEMBER 2018 • A&U

by Ruby Comer

Alan Ramírez —Henry David Thoreau

Some cause happiness wherever they go; others whenever they go. —Oscar Wilde

here are scads of meanings for the word happiness, but the only one that matters…is mine! Happiness to me is witnessing someone who has mastered their physical being. That’s how I felt when I saw a performance by the dance artist, Alan Ramírez. Describing his skill is tricky. It’s like a tablespoon of Cirque de Soleil, a pinch of the American Ballet Theatre, and finally a scoop of Nijinsky. Now you begin to understand the complex dynamics of this fascinating pro. I was introduced to Alan’s talent in his debut film, I Am Happiness on Earth. Since then, he’s made two more films, all under the direction of Julian Hernandez. Since then, I’ve been fortunate to witness Alan in concert. His gift extends to aerial (Lycra, Silks, Straps, Trapeze, Spanish Rope), Flamenco, point work, and modeling, which includes dancing in various TV commercials. Alan, thirty, lives in Mexico City, where I’m now working for a couple of weeks. Early in his career Alan landed two full summer scholarships, one at the Bartholin International Ballet Seminar in Copenhagen and the other at American Ballet Theatre (ABT) in New York City. He’s danced in The Nutcracker Suite—and has even played Romeo. I wish I were Juliet! In 2016 and part of 2017, he toured Italy, France, and Greece with La Fiesta Escénica Circus Show. Currently, Alan is dancing in a Rock show called Catarisis

(catharsis). I caught it a couple of nights ago and I couldn’t take my eyes off of him. Watching Alan is a study in strength, flexibility, and focus. A couple of days ago I attended a seminar conducted by UNAIDS, a global advocacy and support organization co-sponsored by the United Nations—but ya’ll knew that! Today, I’m visiting the awe-inspiring team of IMPULSE, where they do divine work. Afterwards, I meet Alan following his nightly performance, at a nearby pub in a small plaza, located on a cobblestone street adjacent to soaring 100 year-old trees. Ruby Comer: This is my first time to Mexico City. I had no idea it was so charming and cosmopolitan. Happiness! [I plainly blurt out, as I scoot up to the bar.] What is happiness to you, Alan? Alan Ramírez: [He ponders, looks away briefly.] It is the capability of allowing yourself to be amazed. Hmmm, I like that. Evidently Julian Hernandez is crazy about you, since he continues to place you in his films. Of course I understand why! [He beams shyly.] Julian is a great guy and I really get along with him. After working together we developed a nice friendship. [He pauses and sips his Perrier.] Believe it or not, he initially contacted me through Facebook after he saw my photos. What was your experience filming I Am Happiness on Earth? It was a discovery. The first time I did something like that. I was very nervous and also in disbelief that I was actually doing it. I’m so glad that I was able to work with such amazing people. Tell me a backstory while filming.

Before I had to do a scene with my top off, it was lunchtime. To avoid being bloated I ate just mandarin oranges—a lot of them! I ate so many, I ended up feeling nauseous. Oy! [I grab a handful of popcorn that’s near.] Dancing is demanding. Do you manage to have a personal life? I hang out with friends. I like going to a party, but I don’t do it often. I love to go to a club and dance, and I love the cinema. I also watch Netflix almost every night. Ahh, Netflix, which is where I discovered you! [You can find I Am Happiness there.] What’s a typical day for Alan Ramírez? It depends on the day, but I usually get up—always late and running [I nod in agreement of the familiar behavior], take a shower and then have a quick breakfast. I

Ruby illustration by Davidd Batalon; photo by Jacqueline López

Happiness is like a butterfly: the more you chase it, the more it will elude you.

A&U • SEPTEMBER 2018

Alan in performance

things by that age and you feel bad when that’s not the case. Although I know in reality it’s not like that, it still gets to me. What’s the current HIV campaign circulating Mexico City today? It is always about using condoms, and checking yourself [through testing]. I know people of my generation, and younger, are getting infected…[Alan halts.] Glad you brought that up, Alan. How do we all reach out better to them? It’s all about education, Ruby. Having innovative and attractive campaigns. Using technology to reach out to everyone. Good point. When did you first get tested, and what was your encounter like? I was nineteen. I remember I was very anxious about it and wanted to know the results quickly. I did it at an STD clinic.

there’s no need to worry. I try to let him know I love him very much every day. go to ballet class, then stretch. After that, I go to Pilates, Gyrotonics, or Castings. I have lunch in different places. At night I go to my circus class, return home, eat while I watch or read something and sleep. What book are you reading? A Body of Work by David Hallberg.

photos by Carlos Quezada

Say, the other night when we spoke briefly backstage after your performance, you mentioned that you had a friend who’s HIV-positive. First off, what comes to mind for you when you think of the epidemic? Oh, Ruby....Fear. Fear. [He shakes his head endlessly back and forth, striking a painful look on his face.] I first heard about AIDS when my father took me to a gay festival. I was four. Four? Startling you remember that. As to your friend, tell me about him. Well, I listen to him and give my full support, and when he asks, give him advice. I think the hardest part for him has been assimilating the fact that it’s something that not everyone will be okay with. In the beginning, he wondered if he would find love, having HIV. [He clears his throat.] He’s better with that now. We have both done enormous research and we know that if you take the proper care SEPTEMBER 2018 • A&U

He’s blessed to have a dear friend like you, Alan. Say, are you straight and are you in a relationship? I am happily single and happily homosexual. O…M…G, I like your reply. That is the best retort I have ever received after asking those questions. You made my day, Alan! Your reputation for not mincing words precedes you, Ruby! [We both giggle and clink glasses in a toast.] Have you seen any HIV stigma in Mexico City? Yes, even though there is a lot of information on the subject, people still have wrong ideas. Some even think HIV refers to having AIDS. There’s a long way to go. Were you educated about the virus in school? Yes, we learned about all STDs in school. They told us pretty much everything there was to know…at that time. That’s right. You turned thirty this year! How does it feel? Well, it’s bittersweet. [He slides his hands up and down the icy perspiration around his glass.] As a dancer, aging is difficult. There is certainly a social stigma to turning thirty, as one constantly hears. Stress is put on you to have done certain

How do you feel about PrEP? I think it’s a great way to prevent the transmission of the virus, but I don’t like the fact that a lot of people are taking it as a replacement for condoms. We should all have a conscious, healthy sexual life. Sí! Muy bien. Have you always played safe? No. [He states this simply and straightforwardly.] Thanks for your honesty, Alan. Are you currently on PrEP? I don’t think it’s available in Mexico yet, but I’m not sure I would take it. I’d have to do further research. [I inform Alan later that PrEP is available in Mexico City, but accessibility outside of the city is nonexistent.] Fair enough. Alan, who do you look up to? I think everyone has something to teach—and to learn. My ex-boyfriend, who is now a good friend, is someone I really admire. Those afflicted with the virus also inspire me. [A Madonna tune comes on and we sing a few bars together. All of a sudden, Alan puts up his hand, as if to say, “Stop.” His smiley puppy brown eyes begin to glisten.] I really hope that we find a way to eradicate the virus. Can you imagine, Ruby, what it would be like if we didn’t have to worry about HIV? That would be happiness to me! Connect with Alan on Instagram @alanramir3z. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com.

viewfinder

“I Am HIV Positive”

very time I give a tour at the AIDS foundation I currently work for, I share my status and say out loud, “I am HIV-positive.” But it has not always been easy to say these words to another person. As a matter of fact, it has been very recent since I have decided to reveal my status to anyone else other than my long-time partner and two close friends. In early 2008, I lost a cousin to the AIDS epidemic, which motivated me to go and get tested. Later in the year, I found out I was HIV-positive. Fortunately, the benefits of living in San Francisco at the time came in handy, as I had access to valuable information on how to suppress my viral load to the point of becoming undetectable. For example, I learned about how I could increase my success rate of taking control over my diagnosis by starting treatment immediately. That same year, I spoke to my Infectious Diseases doctor about starting treatment in January 2009. And, after a failed attempt to make Atripla work, I moved on to Truvada and Isentress. Soon after, I tested with an undetectable viral load. By the way, have you heard of the U=U (Undetectable = Untransmittable) campaign? Well, later I came to learn that I was undetectable and untransmittable. It has been confirmed that an individual who is HIV-positive and becomes undetectable while on sustained treatment is unable to transmit the virus. This was great news not only for me but also for my partner who is HIV-negative. When I found out I was HIV-positive, my diagnosis did not become the center of my attention right there and then. However, I did make sure I would get linked to care. Moreover, it had been two years at that point since my relocation to San Francisco and I was still emotionally scarred. I was trying to heal childhood trauma; losing my mother at the age of five, child neglect, unstable housing, bullying at school, and the inability to continue being part of the Jehovah’s Witness congregation because I was gay. So, I packed up my things and fled to San Francisco in 2006 in search of a better life. But San Francisco continues to be one of the most unaffordable places to live in to this day. So, I worked round-the-clock to be able to afford

Josué E. Hernández my journey toward saying it out loud

housing there. As a result, my greater concern in 2008 was to be able to pay rent in San Francisco. Consequently, I never looked for an HIV-positive social support group, mental health, or any other resources to help me cope emotionally with my status. You see, growing up, I was not shown how to navigate my emotions and express my needs. So, that made it even more difficult to be able to process my emotions regarding my status. Plus, the stigma associated with the virus did not make it any easier. Dealing with my status was something else I had added to the queue of unresolved issues and trauma that I would eventually start working on one at a time. So, I took every opportunity I had to start the healing process. For example, I learned from my partner’s example, who is more emotionally-aware and more vocal about feelings, which helped me practice self-awareness and develop agency to express and take ownership over my feelings. Additionally, I read Nonviolent Communication by Marshall Rosenberg, PhD, which influenced and helped me change my communication style positively. This book gave me exactly the tools I needed to put into words my feelings, needs, and wants. These are some of the steps I have actively taken to find some healing and now to be able to deal with my HIV status proactively. Fast forward to two years ago, I came to realize I needed to connect with a community I could become a part of that would understand my HIV status and personal struggle with the diagnosis. The effort to reach out was slow and gradual as I was working on revealing my status and saying it out loud. That is when I came across Radiant Health Centers (formerly AIDS Services Foundation Orange County) in August of last year and signed up to get a tour of the Service Center to learn more about their services. Little did I know, in December,

2017, I would join the staff there and have the privilege of conducting the same private tour I had just take a few months back. Additionally, I actively share my status through presentations I make in the community where I share the agency’s mission, goals, motivate the audience to get involved and help create a healthy Orange County. In conclusion, I am very fortunate to live in an era where being HIV-positive no longer means a death sentence and where I can live a fulfilling life in the company of my loving partner. I have concluded that I have the social responsibility to empower others who are HIV-positive, destroy the stigma associated with the virus, and help many more prevent future transmissions by being open about my life experience dealing with my status. Therefore, I will not lose any opportunity to say “I am HIV positive” loud and proud! Josué E. Hernández currently lives in Orange County, CA with his partner, two Scottishfolds, Maxie and Carlota, and a Cavalier King Charles Spaniel named Auggie. His dedication to raising awareness and bringing the HIV/AIDS epidemic under control is demonstrated by currently working as the Director of Annual Giving at Radiant Health Centers, the largest service provider to people infected and affected by HIV/AIDS in the county. He is particularly invested in raising awareness about HIV/AIDS in Orange County, California, because his community is disproportionately being infected and affected; the Latino/ Hispanic MSM (men who have sex with men) population has the highest infection rates in the county. Connect with Josué via his website: www. josuehernandez.us.

photo by Doug Tejeda

A&U • SEPTEMBER 2018

OCTOBER 2 - 10 2017

MAIN EVENT OCTOBER 7 M TELUS (CLUB METROPOLIS)

O C

U N I C ATI

NS+

MANY THANKS TO

TO THE BENEFIT OF THE BBCM FOUNDATION FOR THE FIGHT AGAINST AIDS

INFO | TICKETS : BBCM.ORG

Lying on Instagram

and other secrets to fighting hiv

with meticulous construction and glue. Too much water or too much pressure and it will fall apart. This we don’t tell you. This would not sell the pharmaceuticals so easily. This is the difference between being on PrEP and actually having the disease. But perhaps we’ve made it look too easy. Perhaps we haven’t posted enough sad stories on our Facebook. Because now the government is asking me to prove something it should already know. AIDS is still AIDS. Once upon a time we advocated so hard for our infected brothers and sisters that once you were deemed legally disabled from AIDS, you never had to prove it again. AIDS organizations would actually intervene on our behalf and lobby so that AIDS patients were given the extra attention they deserved. But no one has called me back, and the day I was able to make it to my city’s largest AIDS organization, they had no one in the office for me to see. So I don’t know why they were even open! (High blood pressure goes higher as I begin to lose my—) Breathe.... Needless to say, she is nervous. I CANNOT take my old broken orthopedic butt back into the working world! Doing one thing a day is usually more than she can handle! I know my Instagram makes it look like I’m living a fantastic life. But ya’ll do know, that NO ONE is telling the truth on the Internet right?! Do you really think that all those pretty young

“models” with perfect bodies and teeth are really on yachts in Ibiza every week? Please! Wake up my people! It’s all LIES! THEY HAVE NO TEETH!! I have diarrhea daily, I can’t extend my elbow, I have therapy, group therapy, psych meds, and three doctors appointments this week; but the light from my bedroom window makes me look cute in photos. And trust me, I know my angles. So as I begin to fill out this form and try to convince the government that I have not been miraculously healed from an incurable disease, I have a simple request: Do not be fooled by how brightly we smile. AIDS is still AIDS. Invest in the communities around you. Vote for funding that helps the sick. Know that we are not taking advantage of the system. Trust that your tax dollars are needed and appreciated. And when you see me on the bus stop in a cute outfit and painted nails with my head held high and my imaginary blond curls blowing in the wind, know that like a person fighting cancer, and smiling through chemo, I too am just trying my darnedest to make it to another day. And praying that with just a little more force of good will, maybe, just maybe, I can keep my body from betraying me. Love and Light 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.

illustration by Timothy J. Haines

ast week I got a letter from the government asking me to re-certify that I am disabled, and I am shook. Oh, yeah, by the way, I am disabled. I have been disabled for about thirteen years now. A lot of us are. And because HIV awareness and education primarily promotes affirming images that prove that you can still have an active and productive life with this disease; and because we don’t want to scare the new sero-converts into thinking that their lives are over, we sometimes over compensate by printing ads full of smiling muscular people playing Frisbee in the sun with captions that read “Just one pill a day!” and “Life goes on!” WHICH IT DOES! And as the queen of self-actualization, I have post-its all over my walls that tell me that “I am healed!” and to “Live fully!” I go to the gym, therapy, connect with friends, and wear really cute outfits to convince myself that I am still viable and beautiful and worthy of love...WHICH I AM! But. AIDS is still AIDS. And I have had AIDS for more than twenty years. My joints are swollen and locked; I take more than fourteen pills a day, including a substantial amount just to make the pain bearable; I have been hospitalized and operated on more times than I can count; and every few months something strange and difficult to diagnose tries its best to take me out. I may look fantastic in a jockstrap! AND I DO! But my immune system has been compromised for two decades; I have HIV-related dementia (it took me twenty minutes to find the word “dementia”), major fatigue, kidney and liver issues, major anxiety, and a list of countless other things too boring to list—all aggravated and related to stress, or how the wind blows on any given day. It is not easy. It takes every ounce of concentration and personal investment just to keep it all together. I know some of us make it look brilliant and amazing.... And you are welcome. Showing the rest would be too scary for most to handle. But no matter how graciously we handle our burden, this body is just a papier mâché project held together

A&U • SEPTEMBER 2018

Taking Control

starting treatment gave me peace

illustration by Timothy J. Haines

was always scared to go on treatment. Partly because I lacked the education to understand what I was going to be dealing with for the rest of my life. Partly because I was in denial that the virus that I had assumed I would never have to deal with was now going to be a constant part of my life moving forward. Almost eight years into my initial diagnosis, I think about the important peace that I received by going on treatment, and my urge to ensure that others can get to this place as well. I had just turned twenty-five when I was first diagnosed with HIV. The day it occurred I remember crying for nearly twenty-five minutes straight, with the only thought in my mind being that I was going to die. I was naïve and uneducated at the time of how many advancements had been made with suppressing the virus, so I wasn’t fully prepared to accept this being my fate. I just knew my days were numbered. That same day I had a full blood draw done and then went home to wait a week to get the full results. Once I got the results that confirmed I was indeed positive, I went to the doctor for my first appointment. It was in that appointment that I was told my viral load and reassured that I would survive but needed to get on treatment. I wasn’t ready. I simply had not built up my own confidence nor had the circle of friends and support needed to be able to make that type of decision. So, I waited and hoped that nothing bad would happen to me in the interim while not going on medication. This was 2010. It wouldn’t be until I moved to D.C. in 2013 that I built up enough confidence to finally take steps to begin treatment. I am not going to lie to you—the first month I had pretty rough side effects. Stomach issues and lightheadedness were some of the early on symptoms I faced. I remember thinking to myself if these side effects were something I was going to have to live with for the rest of my life, then I would just deal with it. I just wanted to live at that point. I remember getting my first set of labs back after being on treatment for

SEPTEMBER 2018 • A&U

three months and it stating that I was undetectable. This was the happiest day in my life at that point. I remember this ease that came over me knowing that I was going to be okay. That I was empowering myself to take care of myself. The side effects eventually subsided and the fear I built up for three years seemingly went away as I became more confident in myself, my sexual health, and the conversations I would have around disclosure. Years later, we are now living in a time where being undetectable means that you can no longer transmit the virus. It is powerful knowing that, in taking treatment, I am not only protecting myself, but the people who I am having sex with. There is a calming peace that comes with knowing I am doing my part to help stop the transmission of the virus. I also know that this is not enough and is why I continue to fight for others to have this ability. This means telling my story to inspire others to also get on treatment. Although it is not a requirement, HIV going untreated is still very dangerous. The body having to constantly fight the virus daily without the help of medication takes its toll. Going on treatment allows you the

opportunity to take control of your health, increasing the quality of life significantly over time. This also means fighting for access and resources in our communities that are still unable to receive treatment while dealing with stigma and shaming from those people who remain uneducated about the advancements in HIV care over the past forty years. Even when we have access, we must take it a step further to ensure that our communities are supported and empowered to utilize the services being made available. We must also challenge providers to do a better job of treating clients like humans, and not numbers. Being in care isn’t just about being on treatment and making your doctor’s appointments quarterly. However once in care, you can focus on the other areas of life in which you need support. It is about totality of care, with getting on treatment being the start to a better you. Take control of the virus. Take back control over your life. George M. Johnson is a journalist and activist. He has written for Entertainment Tonight, Ebony, TheGrio, TeenVogue, NBC News, and several other major publications. Follow him on Facebook, Twitter, or Instagram @iamgmjohnson.

Bringing hearts together since 1998

HIV+ Owned Since 1998

Do You Remember Your First? by

Hank Trout the first loss is the deepest, the

hardest, the scariest

Dean died first. In early 1982. For about a year, we had worked together at Folsom Magazine after we left Drummer, he as art director and principal photographer, I as editor and head writer. Even though I was only twenty-nine and Dean was twenty-two or -three, I felt much older than he and protective of him in an older-brother kind of way. He looked even younger than he was, with his short shaggy-cut chestnut-hued hair, creamy white skin, deep brown eyes with gold flecks in them. He was taller than me and somewhat gangly; he moved with a combination of youthful awkwardness and grace that made him a glorious terror to behold on the dance floor. His energy was boundless—he filled the art room with rowdy punk rock while he worked and pogo’ed around the room like a leather-clad faery. Despite his rough-hewn exterior, he was as wholeheartedly dedicated to his art as any other artist I’ve ever known. I was often amazed at how mature his artistic sense was, how keenly perceptive his photographer’s eye was, for someone so young. Dean firmly believed that, with our shared mission to make genuine Art and not just more gay porn, we were going to change the world with Folsom Magazine. Most days, he made it easy to believe that we could. Dean flounced into work one morning, his knees sticking through the man-made holes in his jeans, his aluminum spray-painted worker’s boots muddier than usual, his hair…cut and bleached. He had shaved his hair into a Mohawk and dyed it the most shocking color I’ve ever seen, a “nuclear SEPTEMBER 2018 • A&U

canary yellow,” like the last little bird to fly over Chernobyl. When I first saw Dean’s Mohawk, my jaw dropped open. He grinned as if to say, precisely the reaction I wanted! “Whattya think?” he asked, fluffing his hand through his feathers. “Well, Dean,” I began, crossing my arms and smiling, “I think it looks like hell! But that’s the whole point, right?” “OF COURSE!!” he laughed, and off he bounded into the art room. Later that afternoon, when we were alone, Dean turned down the punk rock music—a rarity—and slowly ambled over to my desk. As he put both hands on my desk and leaned down toward me, he whispered, “Hank?” I glanced up from the story I was editing and saw that his eyes were watery, his lower lip trying not to quiver. “What’s the matter, Dean? Sit down. Please. Tell me what’s wrong.” “No, I’m okay, I just wanted to show you something.” He took a step back from my desk and slowly lifted his t-shirt up. The creamy white skin of Dean’s torso had disappeared behind a camouflage pattern of lesions; his chest and belly had become a battlefield full of detonated landmines, with each fleshy crater cradling a purple-brown-yellow lesion, blue and red veins running out from the craters like unmarked roads on a war-torn map. I didn’t have to ask if the lesions were

painful; I could see the pain in every vein, in every crater. When I could finally look up, our eyes locked, and for several moments we just stared into each other’s eyes, saying nothing…and everything, the tears freely rolling down our cheeks. Neither of us spoke for a while. I looked down at my desk, wiped tears from my face, and looked up to see Dean slowly, painfully lowering his shirt. “My doctor says it’s definitely KS. The ‘gay cancer.’” He bit his lip. “It doesn’t look good.” And I couldn’t even hug him. It would have hurt too much. For both of us. Just a few weeks later, Dean died. * Do you remember your first loss to the epidemic? That first death that made you realize, oh my god, this is real, and it’s closing in. The first death that made you consider your own mortality. The first death that ripped your heart out and stomped on it till you thought you’d never feel anything again. We all have a “Dean” in our past. Honor your Dean by telling your story about him as far and wide as you can. It won’t bring him back to life, but it will keep his memory alive. Hank Trout, Editor at Large, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-eight-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.

illustration by Timothy J. Haines

very long-term HIV survivor on the planet has stories to tell about friends, lovers, co-workers, and/ or family members whom they lost to the AIDS epidemic in the 1980s and 90s. Anyone familiar with my writing here over the past few years knows the importance I place on our storytelling, our sharing our stories ourselves, to avoid the “straight-washing” of our history that happens when we let others tell our stories. With that in mind, this is a story about the first of my friends to die. *

YOU MATTER AND SO DOES YOUR HEALTH

That’s why starting and staying on HIV-1 treatment is so important.

WHAT IS DESCOVY®?

DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. DESCOVY combines 2 medicines into 1 pill taken once a day. Because DESCOVY by itself is not a complete treatment for HIV-1, it must be used together with other HIV-1 medicines.

DESCOVY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking DESCOVY. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body ﬂuids. Never reuse or share needles or other items that have body ﬂuids on them.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about DESCOVY? DESCOVY may cause serious side effects: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking DESCOVY, your HBV may suddenly get worse. Do not stop taking DESCOVY without ﬁrst talking to your healthcare provider, as they will need to monitor your health. What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: • Changes in your immune system. Your immune system may get stronger and begin to ﬁght infections. Tell your healthcare provider if you have any new symptoms after you start taking DESCOVY. • 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 DESCOVY if you develop new or worse kidney problems. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that

can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effect of DESCOVY 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 DESCOVY? • All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how DESCOVY 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 DESCOVY with all of your other medicines. • If you are pregnant or plan to become pregnant. It is not known if DESCOVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking DESCOVY. • 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 DESCOVY, including important warnings, on the following page.

Ask your healthcare provider if an HIV-1 treatment that contains DESCOVY® is right for you.

IMPORTANT FACTS

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

(des-KOH-vee) MOST IMPORTANT INFORMATION ABOUT DESCOVY

POSSIBLE SIDE EFFECTS OF DESCOVY

DESCOVY may cause serious side effects, including: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking DESCOVY. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to check your health regularly for several months.

DESCOVY can cause serious side effects, including: • Those in the “Most Important Information About DESCOVY” section. • Changes in your immune system. • New or worse kidney problems, including kidney failure. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effect of DESCOVY is nausea. These are not all the possible side effects of DESCOVY. Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with DESCOVY.

ABOUT DESCOVY • DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. • DESCOVY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.

BEFORE TAKING DESCOVY Tell your healthcare provider if you: • Have or had any kidney 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 DESCOVY.

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

HOW TO TAKE DESCOVY • DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines. • Take DESCOVY with or without food.

DESCOVY, the DESCOVY Logo, LOVE WHAT’S INSIDE, 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: September 2017 © 2017 Gilead Sciences, Inc. All rights reserved. DVYC0085 11/17

ey, everyone, I hope all is well. Fall is here and the first holiday that comes to mind is Labor Day. Does anyone know what this holiday is about? And, no, it isn’t about pregnant women going into labor. Labor Day is more about the labor movement and the contributions that workers have made to the strength, prosperity, laws, and well-being of the country. This month, I’d like to shine a spotlight on those who work with us to keep us healthy. I know there are a lot of us that absolutely hate having to deal with doctors or any public health professional, but maybe knowing more about what public health professionals do and why they can be an important part of our HIV journey might take the sting out. Case Manager Many of us who are newly diagnosed are assigned a case manager to help with accessing medication and other resources. One of the biggest complaints that patients have with their case managers is that they are unresponsive to needs. I’m not giving excuses but I’m going to give another perspective. Case managers who work in the HIV community often have too much of a caseload, especially if they are in an urban setting. They see people day in and day out, all day long. The case managers will not know you by name sometimes and often will not remember you. A solution is to get to know your case manager as they will be a lifeline to you. They might already know but let them know your vulnerabilities and talk to them on a regular basis so that they have a more interpersonal relationship with you.

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Internal Medicine/Primary Care Doctor One of the first things I did was seek out a doctor for myself. Since being diagnosed with HIV in 2006 I’ve seen four doctors. I finally found one who is an excellent physician. Dr. A. in NW D.C. is amazing. Before Dr. A., I had three other doctors who I felt treated me like a number. There was no personality when it came to the visits and it was often hard to get in contact with them when I had a question. When I finally switched to Dr. Ang, I felt like he actually cared about me as a person and not just because I had HIV. He has a great system in place. I see him every three months and, on every visit, I have a blood and urine test. I like thorough doctors and I like that he knows me and my family. If you are going to a doctor and you feel like just a number, it’s time to get a new doctor. Dentist Dentists work too hard to protect the general community by instilling knowledge in us about how to follow a good oral hygiene regimen. Many people hate going to the dentist and often complain about how they are frightened to go. But we have to go because we need to prevent gingivitis, halitosis, and other infections and conditions of the mouth. Lots of people complain that dentists who are not in private practice do not have the experience or knowledge to do good work. Honestly, please keep in mind, they are working with what they have. Many dentists make a salary as low as 30K a year. They also work on patients who have neglected their oral hygiene for years and sometimes only because they are on the lower end of the socioeconom-

ic spectrum. A lack of dental insurance coverage is a travesty in this country and that is also another reason why people cannot get to a dentist right away or at all. But do not blame the dentist; blame the system. Pharmacist Now the main concern that I hear from people is that they are not getting their prescriptions filled on time. I’ve seen people call their pharmacist and curse them out because they have not received their medications when expected. There are many reasons to consider when expecting your pharmacist to have your medications ready or mailed to you in a timely manner. Call your doctor first to check to see if they have sent in your prescription to your pharmacist. Understand the pharmacist cannot do anything until your doctor sends in the prescription. Another word of advice is to order the prescription early; in case something goes wrong you’ll have enough time to alleviate the problem and still stay compliant with your medication. They have a lot of patients that they work hard for and with, so don’t think you’re the only one on their list. I chose to focus on these four public health professionals because I have the most experience with them. I have gone to see all four types of professionals named above when I was uninsured, underinsured, and fully insured. I’ve felt agitated and frustrated with all four, but now I understand what they go through day in and day out. But of course, living with HIV is not easy either. We all have to work together and fight the good fight. ◊

Justin B. Terry-Smith, MPH, DrPH, 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. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at justinterrysmith@gmail.com.

On the Surface

here were some years in my life where I can say that confidence was not something I suffered from a lack of. Not exactly what you would call a healthy sense of self-esteem, however, rather an ego run amuck. My priorities were different and I found the surface of things to be of major importance. The things that I felt made one a success were good looks, what you earned, what you drove, and how you dressed. My bravado and chutzpah stemmed from a certain lack of self-worth, if that makes sense. I thrived on the attention I got from men, any man. I could not see myself clearly unless it was through someone else’s eyes. Everything was therefore about that all-important surface. If I appeared to be a good-looking, body-obsessed, career-driven gay man of some means, then that was what I was. Now, fifteen years after my HIV diagnosis, I can say I’m a better man. I’m forty-eight now, no longer obsessed with the corporal and richer in experience than in money. I’ve settled into “beardom” and while a bit heavier than I’m comfortable with, glad to have my life not completely revolve around a gym. I’d like to be healthier and feel a little less awkward physically, but I’ll get there when I’m ready, I won’t do it just to make others happy. Two major events led to my complete reconstruction of self by my late thirties, a diagnosis of HIV at thirty-three as well as a bipolar diagnosis that quickly followed on its heels a year later. It took years to rebuild from that, but I did it. Things aren’t perfect, mind you, but I have a firm foundation. Something took place yesterday that made me question that sense of self. It was a much anticipated date with a beautiful, wonderful young man. We spent an incredible day together, everything went well,

but inside I was seriously off my game. I felt like an incredibly awkward teenager again. Like all of my recent dates, there was travel involved. Living in my small city is bearable for me because New York City is so close. I come two or three times a year and often date when I do. Recently I’ve been thinking a lot about moving back

in a year or two and, if I met someone special here, it would be all the better. I’ve also come to the conclusion that you can’t pin your hopes on a guy you’ve met online, at least I can’t. It’s a good way to build a rapport, but I can’t be sure until I’ve actually spent some time with someone. So I’ll have a great time with some incredible men and if something lasting comes from it, all the better. So, as I am wont to do and have written about it in this column, I met this guy on Scruff and we hit it off. He’s not my typical type but I was struck by the beauty of him. He’s also younger, not a great deal, but by thirteen years and it’s true that when you’re forty-eight, that can be a lot. What seemed apparent in our online communication was definitely true. This is a guy whose maturity and poise at thirty-five is

much more common in someone older. We had brunch and dinner plans yesterday, and enjoyed both and our time together immensely. But, as I said earlier, I wasn’t feeling my usual, confident self. I tried not to overthink it, I can make myself crazy that way, but on reflection, that’s just fine. How would you manage to be open to possibilities, if you don’t feel vulnerable at times? It really got me to thinking about what had changed in me and I can’t help but think back to my diagnosis of HIV. I don’t think that I ever fully appreciated the changes it wrought. Gone is the brash, cocksure, and much younger man and in his place is someone open to change, someone much more vulnerable. I’m in awe of beauty, not in its thrall and, in the case of my date yesterday, I was just as affected by his inner beauty as I was by the surface. Certainly there’s room for more confidence; beating myself up inside because I don’t feel worthy of someone is just as damaging as my out of control Vanity was in the past. The changes that will make that possible are entirely in my grasp, however. I can lose the extra fifteen pounds I’m carrying, I can fully realize that age is just a number and that plenty of younger men enjoy the company of someone older. Hell, I can just remember how to take a deep breath, relax, and enjoy a given experience for what it is. No need to stress—I’ve certainly been through worse. 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 fifteen years and he is currently at work on his first novel, Fools Rush In. His fiction has been published in the ImageOutWrite literary journal and is a literary critic for Lambda Literary. Follow him on Twitter @JohnFrancisleo2. A&U • SEPTEMBER 2018

illustration by Timothy J. Haines

does your inside match your outside?

n o it

Fiction

c H if

Nightstand

by James Magruder

ow soon can you be out of here?” Asked Louis, my husband of two years. I had come home to Philadelphia from a conference in Milwaukee and remarked, as we were prepping for bed, that I felt as if it didn’t seem to matter to him which city I was in. That tripped off a monologue that began with the statement that he was feeling “hopeless about the marriage.” The third floor was frigid that January night in 1997. From a metal folding chair, its seat covered with dried paint drips, I listened to Louis say crushing things a few feet away from me. He was a psychiatrist, an initial blessing that had become, over time, an unfair advantage, because it led me to receive every negative thing he said about me as gospel. I leaned against the flank of an armoire I had bought for us in less hopeless times. The unstained floor was scribbled with grooves too deep to be sanded smooth. Parts of the floor looked as if a child had mounted a circular saw and had been riding it like a tricycle. Replacing the wood was far down on Louis’s list of projects. His ability to wire, plumb, lay sheetrock, tile, and brick, hang wallpaper, garden, cook, and can, was one of the things that had drawn me to him. He’d dug a goldfish pond, built a grape trellis in the backyard, installed a shower. I’d been his helper, grunt, and assistant de chef. With guests, I was as house-proud as he was. Behind Louis was a nightstand painted black, its mouth packed tight with old bills, theater programs, patient notes, and, occasionally, a pornographic magazine, which was an issue for me. When we’d first been dating, I’d had this notion that Louis wouldn’t need porn if he had me in the picture, a losing position I’d inherited from my mother, who had endured forty years of my stepfather’s Hustlers and Penthouses and Ouis. I hated having to look for Louis’ porn as much as I hated finding it. When feeling particularly insecure, I’d search with the fury of Carrie Nation until I’d found a stash under his car seat, or in the magazine basket in our bathroom, or under a pile of grocery bags in the pantry. We had stopped discussing how I felt they demeaned me, so I’d simply stack them on his side of the bed and wait for them to disappear. I didn’t have a nightstand. When nodding off, I would reach over to my left to place my glasses and my book directly into the deep window embrasure framed by those built-in folding shutters common to Philadelphia houses. I didn’t interrupt Louis to advocate for our union when he had decided, unilaterally, it was over. The Supreme Court wouldn’t grant the right to same-sex marriage for decades, so we had wed ourselves to one another in the spring of 1995, in a ceremony of our own devising, in front of eighty-seven guests in the garden of a friend’s house in Society Hill. At the time I had been living with HIV for ten years. My T-cell count was thirty-five. Current statistics predicted another two years before my inevitable decline and death. Yet when I had said, “I do” to Louis, and moved into his house, I was not ill, or weak, or depressed, or anxious about anything beyond whether the food would hold out and our guests would dance to the swing band we’d hired for the reception. Late in 1996, after five months on the then-new anti-retroviral combination therapy, I learned that my viral load was undetectable and my T cells had begun to climb. I drove Louis’s car back from the doctor’s office and ate a Greek salad parked in the driveway. When

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the magnitude of my medical news hit, an oily ring of dropped green pepper stained my tie and trousers. If I was going to live—and Dr. Butson had suggested that this was the case—then I decided that I needed to work on my marriage. I kept this vow from Louis, but it was on my mind when, the week after Christmas, I found a trove of pornographic VHS tapes in the Stickley cabinet in his office on the first floor where he saw his paying patients. Bad Black Daddies is the title that sticks most in my mind, because the red ball jammed in the hog-tied submissive’s mouth on the cover looked especially obscene. Magazines were awful enough, but movies? We didn’t own a television, so where did he watch them? He said there was a VHS deck in his group practice office on Locust Street. Now, some weeks later, frozen against the armoire, I had no choice but to accept his ruling. He said he had never been happy with me; he couldn’t breathe; he had to work too fucking hard to get so little air; I didn’t recognize him as a complete and separate person; I completely invalidated him. I believe he had spoken for twenty minutes before I managed to say, in a tiny voice: “What would have happened if I had gotten sick?” And he said, “I would have stayed with you.” In sickness, but not in health. I said, in an even tinier voice, “Lucky for you I got better, huh?” And that’s when he had asked me how soon I could be out of there. Our sleigh bed, Mission-style as well, was still made. I took a pillow from my side and, mulling his parting shot—“The person I am becoming can’t be with the person you are”—went to sleep in the guest room. I hadn’t disagreed whenever Louis called me a righteous, perfectionist control freak, but stealing the very air from him? I had thought that exchanging vows in front of eighty-seven people meant that when a couple hit a wall, they would at least attempt to unbrick it together. Stay together, fly apart, but try. Louis’s life’s work was based on the conviction that people could change, but he had denied that possibility in me, and for us. When I came down the next morning, the pocket door to the back parlor was closed, which meant Louis was with a patient. I set my weekender at the foot of the staircase. We had spent weeks stripping and sanding all three flights to his specifications, but had yet to paint them. There were one hundred and seventy-four spokes waiting for the brush. Also an unfinished dining room on the second floor whose balcony door opened onto a thirty-foot drop into the fishpond. The toilet on the third floor still wasn’t hooked up. For my final act as household help, I went to the magazine stand in the front parlor and carefully placed well-thumbed copies of Honcho, Inches, Bound & Gagged, and Freshman magazines under Louis’s latest issues of Town & Country, Harper’s, and National Geographic. I thought his patients should have a clearer picture of who was treating them. I went outside and flagged a cab. The police siren that went off a couple of blocks over just then sounded like church bells. James Magruder has published three books of fiction, Sugarless, Let Me See It, and Love Slaves of Helen Hall, and written the books for two Broadway musicals, Triumph of Love and the recently opened Head Over Heels. He lives in Baltimore. “Nightstand” received first runner-up honors in A&U’s 2018 Chris Hewitt Awards literary contest.

A&U Gallery

Local Treasure Artist David Zaintz Talks About Making Paintings and Confronting AIDS in the Desert Southwest by Lester Strong

isc jockey, masseur, graphic and interior designer, artists’ model: Albuquerque, New Mexico-based painter and mixed-media artist David Zaintz has had various careers, and in a recent interview commented on where the different facets of his talents have taken him over the years, as well as how his work and life have intersected with the AIDS crisis. Born in Brooklyn, New York, in 1963, Zaintz moved with his family to the Southwest when he was ten years old. He didn’t just fall into painting. “It’s not something I expected to be doing,” he stated. “My mother painted, and I

for nearly twenty years, during the 1980s and 1990s, eventually becoming head DJ at one of Albuquerque’s big clubs. “There’s a special place in my heart for club/dance music,” he said. “Club music from the 1970s to the present means a lot to me, and has influenced my art in various ways both visually and in terms of how I’ve titled some of my pieces.” Looking at his art, it’s also clear the vivid New Mexico sunlight and colors have had a deep influence on his work. “Color is the bomb,” he said during the interview. “Certain colors draw me in. Take orange, my mother’s favorite color. Or blue. I’m drawn to all shades

Left: Jeremy’s Waiting, 2014, mixed media, 36 by 36 inches Top: Local Treasure, 2012, digital photo, 7.987 by 12 inches. Photo by Max Woltman

enjoyed assisting her as a child. I was often told when growing up that I had talent, but never really thought too deeply about continuing it.” Instead he became a dance club disc jockey SEPTEMBER 2018 • A&U

of blue, due to its calming effect, and like to incorporate it into a lot of my work. I love pinks and bright fluorescent tones. I was reluctant to speak up about liking those colors as a child,

Impressions of Geneva, 2012, mixed media, 60 by 48 inches

due to the connotations of seeming too gay. Now I proudly push them forward.” He continued: “I recall a friend using a lot of orange in his restaurant because he’d heard it will induce hunger. Taking a cue from him, I enjoy how one color will support another, and in my art like to experiment and see how they’ll work together to achieve a certain feeling—wondering how different combinations will ultimately affect viewers.” In addition to color, Zaintz brings to his work a highly sensual element of touch. Both his abstract and figurative pieces pop out at you, as if reaching out to touch you physically through your eyes. This may have something to do with his parallel career as a massage therapist, where for the last twenty years he has worked with clients through

his hands and fingers to help heal and relax them physically. Indeed, you might almost say he massages his art into existence. “I use many methods to apply my paints,” he said. “Mostly my fingers, but also occasionally brushes. I always start by using my hands to apply a textural coat onto the board or canvas and to start the background color. I then incorporate the use of rags or a pallette knife, charcoal or ink, along with brushing on paint or scraping it off to get the desired effect.” Here he laughed, adding: ”Not that it always ends up the way I want it to.” In recent years, Zaintz has won a number of awards related to his art: He was named a Local Treasure by the Albuquerque Arts Business Association (AABA) in 2012, and OUTstanding Artist by the Albuquer-

que Pride Committee in 2015, 2016, and 2017. “AABA puts on the Albuquerque ARTScrawl held the first Friday of each month at local galleries,” he said. “I was nominated, without my knowledge, by the gallery where I was exhibiting, the owner noting that my work was so bold and colorful it tended to draw people in and sold very well. The AABA committee was also aware that I donated work to raise money for many local organizations. The Albuquerque Pride Committee’s OUTstanding awards are people’s choice awards given out to folks who play a major role within the local gay community. It was especially awesome to receive the award three years in a row.” It goes without saying that among the local groups to which Zaintz has donated work to raise money are those related to AIDS. Asked how he first became aware of the disease, he replied: “I first heard about AIDS as a rumor, as ‘the gay cancer,’ when I was coming out in the early 1980s. But I had two strokes of good luck. The first was sneaking into a gay bar while I was still underage using my older brother’s ID. I drank too much too soon, and someone noticed I wasn’t doing very well. He asked if I’d like to go for a walk, and as we got some fresh air I found out he was an MD. I now had a gay doctor! From him I learned to avoid infection by not doing anything sexual to cause bleeding and to always use condoms. I mostly did play safe, but it was scary. Hearing about friends and acquaintances getting ill eventually had me to the point of thinking it was sure death every time I felt a cold or sinus infection coming on. I attempted to make peace with my maker on more than one occasion! I will add that movies like Longtime Companion and Jeffrey helped educate me. “My second stroke of good luck happened when my father eventually found out about my sexual preference. His main concerns were first, that I might contract [HIV], and second, that I’d end up alone in A&U • SEPTEMBER 2018

A&U Gallery life. He decided therapy was the answer. Then the therapist he chose for me after much research let him know that he was the one needing help in accepting me like I was.”

First Winter, 2016, mixed media, 30 by 30 inches

Asked how the epidemic affected his personal life, Zaintz answered: “In the early years of the epidemic, I don’t think Albuquerque was hit as hard by AIDS as the bigger cities were. But it started to take its toll around me in the clubs where I was a DJ—co-workers and patrons not showing up. It hit my psyche, causing me to think: When is it going to be my turn? I didn’t date much after a while. I had a partner who left me eventually for someone else who was HIV-positive but also suffered from mental issues and abused drugs. Then my ex got infected. He was living in Provincetown at the time and was planning on moving back to New Mexico. We stayed in touch and even talked about getting together again, but unfortunately he passed before that could happen. As time went on, I became something of a loner and eventually

decided I could be happy with just some good porn and a dog for company. Then six years ago I met a wonderful, sweet guy and amazing photographer, named Max Woltman. We’ve been sharing out lives together since that time.” According to Zaintz, AIDS has come into his art directly on at least one occasion. “I’ve been painting professionally since 2010. Around that time I lost a dear friend whose name was Matt Bubb. He and his partner Ken performed with a very talented local drag group called ‘The Dolls.’ Matt went by the name of ‘Geneva Convention’ and Ken by the name of ‘Tequila Mockingbird.” A few The Great Escape, 2016, mixed media, 30 by 30 inches

months after Matt passed, I was working on a large abstract piece, but having trouble coming up with a good concept for it. I was listening to music, and suddenly some awesome club music popped up on my player. It put me in a trance-like state, and I ended up with a very abstract portrait of what appeared to be Geneva. It’s been really well received over the years and I’m very proud of it.” How do you end an article about such a multi-talented person? Indeed, several of his careers—graphic and interior designer, artists’ model—were barely touched on in the above paragraphs. Perhaps it’s best to turn to a description he offered of himself during the interview: “Here I was, a tall, agnostic Jew from Brooklyn, looking to find his place in the New Mexico high desert.” Take one glance at his art, and it’s clear Zaintz has definitely found his artistic place in the high desert world of the New Mexico sun. For more on the art of David Zaintz, visit his website at www.davidzaintz.com. His work is shown and exhibited in Albuquerque at Sumner & Dene Gallery (www.sumnerdene.com), and in Santa Fe at Reside Home (www.howyoureside.com). Lester Strong is Special Projects Editor of A&U.

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PREP for C

hange starts off small, but it can lead to more positive change,” MPowerment trainer at The Alliance for Positive Change, Brandon Lee [A&U, March 2018] said in a recent interview. He believes in giving people second and even third chances, in order to help them make that positive change in their lives. Sharen I. Duke also believes in second chances and positive changes. A lifetime New Yorker, Duke has served as the Executive Director and Chief Executive Officer of The Alliance for Positive Change (formerly known as the AIDS Service Center NYC, ASCNYC) since it was founded in 1990. Throughout the years, Duke has helped the nonprofit grow into one of the city’s premier multi-service, multisite, multi-lingual, multi-million-dollar organizations serving thousands of New Yorkers living with HIV and/or chronic health conditions. An advocate fighting on behalf of low-income New Yorkers, Duke has received several awards for her work in HIV at Alliance, where she implemented pioneer peer education programs. “Our goal is about positive change and second chances, helping people overcome addiction, access medical care, escape homelessness, and rejoin the workforce. It has been a really beautiful evolution [and] it’s been my honor to be a part of it,” Duke says, reflecting on her years leading Alliance. Commenting on her choosing to work in HIV and AIDS, Duke says, “I got my Master’s in public health [from Columbia University] in the late eighties, and my first job was with the NYC Department of Health, dealing with HIV services.” She reminds that in the late eighties people were going to too many memorials, because too many of their friends were dying from AIDS-related causes. “There were no treatments. There was bigotry and stigma. And I just felt compelled to do something.” Having a public health background, she thought that a way to address HIV was to bring together the medical community, the

activist community and the people living with the virus to help create big-impact programs addressing the public health crisis. “And so for me it was just a natural evolution to do HIV work,” she adds. She points out that, in order to do such work, one doesn’t have to live with the virus, but one does need to have a personal connection to the work, in some way. “You do have to want to help people improve their lives,” Duke explains, in order to “make positive changes towards health, recovery and self-sufficiency,” as they say at Alliance. The organization helps New Yorkers living with HIV and chronic conditions

“feel better, live better and do better.” It helps people “feel better” by building medical community partnerships with large medical facilities, such as hospitals, to ensure that clients have access to medical care. It helps people “live better” by offering clients the full spectrum of harm reduction services—from syringe exchange all the way to abstinence and outpatient drug treatment services. Alliance also helps people “do better” through its peer program. Duke has pioneered a peer education program through which New Yorkers living with HIV and chronic conditions could re-enter the workplace. “When they choose A&U • SEPTEMBER 2018

Life to go back to work, they choose to give back to others,” she comments speaking of those completing the program. In turn, the peer education and training program provides individuals with the skills, tools, and the knowledge they need to give back and help the community. Some of those enrolled in the peer education program are, themselves, living with HIV or hepatitis or other medical conditions. They have navigated the health system and overcome addiction and homelessness; therefore, they can become role models to others. “They are living proof that positive change can and does happen,” Duke says. “The beauty of this peer program is that it is cyclical. Oftentimes, yesterday’s client becomes tomorrow’s teacher.” The Alliance peer program is the core or the foundational training in a series of programs toward certification. The Alliance peer program graduates become community health workers. “Graduates can apply for three internships that Alliance has to offer,” Duke explains. “Depending on availability, skills and interest, some get placed with the Alliance, while others get placed externally. Some get full-time employment. So the internship is a platform for job readiness skills, and it also counts toward their certification, if they choose to go ahead and get NYS certification as

Sharen I. Duke, Executive Director and CEO of Alliance, talks PREP Cycle 50 graduation ceremony & goals for the future Text & Photos by Alina Oswald

peer educators.” The peer program has evolved over time. It was first called Peer Leadership Program. “And then, what we found was that a majority of people who were taking the training had histories of addiction, and were in early recovery or long-term recovery. And so we realized that not only did we need to provide information around HIV prevention and care, but that we also needed to incorporate real-life prevention and recovery support— hence, the transition from Peer Leadership to Peer Recovery Education Program, or PREP. Some [PREP graduates] go on to get full-time employment.” She adds, “And I’d also like to say, I’m very proud that of my 170 full time staff, almost thirty percent are

PREP Cycle 50 graduation ceremony at Alliance

former graduates of the PREP program.” PREP is “an immersive program.” That means, participants meet three days a week, six hours a day for eight weeks. “Through that immersion the participants become a support group amongst themselves. They learn from each other and they support one another,” Duke says. In the process, participants become part of a community that lives on beyond graduation day. That consistency contributes to their further success. What sets The Alliance for Positive Change apart is its offering of a full package of services for peer education, from group training to individual support and job placement, as a part of a compendium of services. What also sets Alliance apart is its peer educators, the PREP graduates, and the goals they have for themselves, and for the organization they were trained by and some now work for. I met a few of these individuals during their last day of final presentations, right before the graduation ceremony. continued on page 54

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Champion for

Equality Brian Sims, Pennsylvania’s Out and Proud Lawmaker, is Making His Mark Advocating for LGBTQ Equality, Equal Access to PrEP and PEP, and Pay Equity for Women. by Chip Alfred Photographed Exclusively for A&U by Holly Clark

here’s no denying Brian Sims is a trailblazer. He’s the first openly gay NCAA football captain in history. He is the first out person ever elected to the Pennsylvania legislature. He’s also one of the first elected officials in the country to include photos of himself with his same-sex partner in a marketing campaign. A charismatic, rising star in the Democratic party just shy of his fortieth birthday, Sims has garnered national attention and racked up an impressive stack of accomplishments and recognitions. But you won’t hear him tooting his own horn. This dedicated public servant measures his success by the impact he’s having fighting for equality and improving the quality of life for the people he represents. After knowing Sims for nearly ten years, the one thing that impresses me most about this man is his ability to remain true to himself. He’s still the same warm, engaging, genuine guy I’ve always known, passionate about his beliefs and living his life on his own terms. Whenever you hear him deliver a speech, it’s always coming straight from the heart, because he’s addressing issues he sincerely cares about. A native of Washington, D.C., Sims was an Army brat, the child of two Army officers. Along with his three siblings, including a fraternal twin brother, Sims lived in seventeen states before the family settled in Chester County,

Pennsylvania, just outside of Philadelphia. Sims acknowledges that having a twin helped with the constant adjustments to new surroundings. “I think of the years when I hated having a twin brother around all the time. Now I look back and think thankfully I had somebody my age, going through what I was going through.” From a young age, Sims knew what he wanted to be when he grew up. “When I was a little kid, if you asked me I would have told you I would be a feminist lawyer,” he tells A&U. He attended Downingtown High School, an institution known for its championship sports teams. Describing himself back then as “kind of a fat nerdy kid,” he joined the football team as a lineman. Sims went on to play football for Bloomsburg University in central Pennsylvania. “A lot of people’s college experiences are the most formative years of their life,” he says. “It was a time where I established some of the best friendships I’ve ever had.” Sims became captain of the team and led the Bloomsburg University Huskies all the way to the 2000 Division II National Championship game. It wasn’t until his last semester of college that the inevitable question he feared for years would finally come. It happened after a fraternity-run Jell-O wrestling competition at rival ShippensA&U • SEPTEMBER 2018

burg University. Covered from head to toe in red Jell-O, Sims was walking back to his car with a few of his teammates when one of them turned to him and just blurted out, “Yo Sims, are you gay?” Needless to say, he was caught completely off guard. “All those years I played ball I always thought at one point my teammates would ask me. I thought I’d have a really great response by then, and I just said, ‘Yeah, man, thanks for asking.’” Naturally, what followed were a whole lot more questions. “They just asked me everything under the sun you could ask a gay guy.” Sims explains that for most of these guys, he was the first friend they ever had that had come out. “Today, these guys are still my best friends; their children are people I know well. It’s really great the relationships I have with them.” After college, Sims enrolled in law school at Michigan State University, earning his J.D. in 2004 with a focus on international and comparative law. After graduation, he moved to Philadelphia, where he took the bar exam and started doing legal work. In 2008, he was named staff counsel for policy and planning for the Philadelphia Bar Association. But it was a man named Dan Anders and his introduction to the Victory Fund that would change the course of his career. Anders, the first openly gay man to run for judge in Philadelphia, approached Sims about co-chairing his election campaign. “When Dan ran, he wanted to run with the Pride flag,” Sims shares. What Sims quickly learned working on the campaign was that Anders had been paying his dues in the LGBTQ community a long time before that. “When Dan got elected to the bench in 2008, he had spent nearly ten years as the LGBTQ lawyer on everything,” Sims observed. Anders had served on multiple boards, and he held leadership positions on several of them. “When he left, there was this big vacuum.” That’s when Brian Sims was tapped to step up to the plate. Sims took over as chairman of a struggling GALLOP, the LGBTQ lawyers association of Philadelphia. He was elected president of Equality Pennsylvania and spent several years working to rebuild that organization. At around the same time, Sims was approached to join the board of the Victory Fund, a national organization focused on increasing the number of openly LGBTQ officials at all levels of government. Sims joined the Victory Fund board, made some key connections, and learned about what it takes to get an out LGBTQ candidate elected. Eventually, his professional colleagues started asking Sims if he would consider running for office. At first, Sims was hesitant. “It just wasn’t what I thought I was looking for. I was on a number of boards, I was running a couple of different organizations that all were impacted by our lack of LGBT elected representation and the lack of LGBT rights.” In 2011, Sims threw his hat in the ring for a seat in the Pennsylvania House of Representatives representing District 182, which encompasses mostly Center City Philadelphia. In 2012, with donors from across the nation and an aggressive local grassroots campaign, Sims was triumphant, after unseating a twenty-eight-

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year incumbent in the Democratic primary. One of the first people to talk to Sims before he decided to seek public office was David Mixner, who he identifies as one of the founding fathers of contemporary LGBT rights in America [see our interview with Mixner in this issue]. “It’s a common thing when we talk about HIV and AIDS to talk about a missing generation,” Sims explains, but Mixner’s perspective gave Sims a clearer picture of the historical context. “Specifically, when it comes to advocacy, we’re not just missing a generation, we’re missing a generation of many of the greatest advocates that the LGBTQ communities have ever known. There was a recognition that they fought for my identity, now I needed to fight for everyone’s.” Since Sims took office, he has been a devoted advocate for LGBTQ rights and equal access to HIV treatment and prevention. Sims has been a staunch PrEP and PEP proponent from the beginning, focusing on public awareness, facilitating community forums, and educating his constituents and colleagues about the barriers to access. The biggest challenges we face with PEP and PrEP, he says, are making it easier for everyone to access the

medications, and making them part of the normal conversation between a patient and a medical provider. “I want PEP and PrEP as readily available as birth control. When my doctor talks to me during an intake about my sex life and the precautions I’m taking or not taking, I want him to make a risk assessment that says, ‘Brian, you might want to consider going on PrEP.’ I want it to be that simple.” Sims acknowledges we’re still not talking enough about PEP and PrEP. “There is still a sex-shaming component to it all.” He points out that the lack of education and specific trainings for medical providers on how to prescribe PEP and PrEP can also be a roadblock to access. “We need to reengage how HIV/AIDS is taught in medical schools. I don’t think the average medical school professor wants to be ignorant to a thing that has public health implications for a minority population.” In 2017, Sims introduced a bill that would make it mandatory for all insurance companies doing business in Pennsylvania to provide coverage of PrEP and PEP. At press time, the bill has not yet come up for a vote in the House. Sims concedes this bill will likely face an uphill battle. “This is a state

legislature that doesn’t even believe in basic LGBT equality,” he declares indignantly. Every year he’s been in office, Sims has co-sponsored legislation to ensure LGBTQ non-discrimination in the workplace, housing, and public accommodations. “In Pennsylvania, the fact that we don’t have LGBTQ non-discrimination in our human relations act is a travesty of justice.” he states. And you can be sure Brian Sims isn’t giving up on this battle. Nor has he given up on his childhood dream of being a feminist lawyer. Sims is one of the few men who has been teaming up with his female colleagues as a key supporter of gender pay Shot of Brian Sims and Brandon equity. “It’s impossible McMullin from to not understand the campaign photo power of women in all shoot by JPG Phoplaces and not also untography derstand that this comes A&U • SEPTEMBER 2018

hand in hand with having that power devalued or ignored. Often, one of the most identifiable ways is with pay,” he says. Sims has also consistently opposed funding cuts for Planned Parenthood in a state where it’s constantly being threatened. In 2014, Sims was honored with the Champion of Choice award from NARAL, a national pro-choice group. The following year, Sims was named to The Advocate’s “40 Under 40” list for his commitment to advocacy. The magazine cited Sims for “his rare ability…to see outside his own experiences and connect the struggles of all.” Upon receiving the recognition, Sims told The Advocate, “Not only do LGBT rights and women’s rights go hand in hand, I feel similarly about racial and ethnic justice issues. This is about equality in a larger sense, but it’s also about to what degree do you believe the government should have control of your life.” Sims, who will run unopposed for reelection for a fourth term in 2018, says he’s focusing his time and fundraising efforts this campaign cycle on identifying and training out LGBTQ candidates in Pennsylvania. He recently supported a two-

day training in Harrisburg with representatives from the Victory Fund, and nineteen candidates or campaign staffers from around the state. He stays in touch with all the out candidates in the state right now, and he anticipates eleven of them will be running for the House. Currently the sole out gay Pennsylvania legislator, Sims is hopeful there will be a few more LGBTQ candidates elected to join him next year. His approach is being as present and accessible to prospective candidates as possible, attending as many public events as his hectic schedule will allow. “Visibility matters. It is proven to be 100-percent true in my life. Every time I go anywhere, somebody walks up to me and says something about thinking about running for office, or they have a friend who is,” he asserts. “I’m in so many rooms where I’m trying to convince people why instead of looking for the perfect candidate, they might become the perfect candidate.” In late 2015, Sims briefly entered the race for Congress representing Pennsylvania’s 2nd Congressional District. A few months later, he withdrew from the race, citing the challenges of running for reelection in the PA House at the same time

"This is about equality in a larger sense, but it's also about to what degree do you believe the government should have control of your life."

he would be launching a campaign for Congress. Is Sims likely to run again? His response, “I don’t know. It’s not something that I’m actively considering.” For now, his focus is on his next term in the House and pushing forward his legislative agenda. “Access to PrEP/PEP, LGBT non-discrimination, gun control legislation, a ban on gay conversion therapy, equal pay for women; these are issues I care deeply about. I don’t want to have been the guy that worked on them and got them right up to the finish line. I want to see these things pass, so I’m here for that.” Sims has settled into the life of a state legislator, shuttling between Harrisburg in session, an office in Center City and a Philly Gayborhood apartment. In his spare time, he enjoys running, playing sports, camping, and exploring the city with his partner Brandon. Last fall, as he was posing for a campaign photo shoot in Philly’s iconic Rittenhouse Square, Sims saw an opportunity to get a new picture of him and Brandon, the man he calls his “Disney prince of a boyfriend.” So, he asked the photographer for a favor. “My boyfriend works about three blocks away, can I call him, and will you take a picture of us?” Brandon popped over and the photo of the couple walking arm-in-arm gazing into each other’s eyes was such a hit with the entire campaign team, it became the official image used in the email marketing campaign. According to Sims, the image and the campaign were very well-received. “So many people who know LGBTQ people know us in a sort of an asexual vacuum. They don’t know our relationships. They don’t know our touch. They don’t know our love. They don’t know what it looks like. Well, it’s an act of defiance to some people; to me it’s an act of familiarity.” When he’s working, Sims says he’s become accustomed to frequently being the only out LGBTQ person in the room. “In the same vein that I know the amount of responsibility that comes with that, I also know enough to know that I could never represent the LGBTQ community wholly. No one person ever could. There’s a reason the rainbow flag is our flag, because we are literally of everyone. I try not to look on it with such a 10,000-foot view. I mostly just try to be in it, and work.” For more information, visit: www.facebook.com/ RepBrianSims, @RepBrianSims. For more information about photographer Holly Clark, log on to: www.hollyclarkphotography.com. Chip Alfred, an A&U Editor at Large, is the Director of Development & Communications at Philadelphia FIGHT.

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Founded by Jon Reed Sims, the San Francisco Lesbian/Gay Freedom Band Celebrates Forty Years of Making a Joyous Gay Noise by Hank Trout Photography by Michael Kerner

MARCHING ON T

here’s not a lot that I remember from my very first Gay Pride Parade in San Francisco in 1981—after all, it was thirty-seven years ago, and yes, it was still called the Gay Pride Parade! But I do remember that the 1981 Parade was the first time I saw and heard the San Francisco Gay Freedom Day Marching Band and Twirling Corps. When the Band marched before me, playing “San Francisco,” I knew that I had come home, never to roam again, as the song promises. Like the Parade itself, the Band has grown and changed its name—the San Francisco Lesbian/Gay Freedom Band— but they have never stopped making a

joyous noise in the forty years since their founding in 1978. There was also no way for any of us to know that, a mere three years after the 1981 Parade, the Band’s drum major and the founder of the SFLGFB would die of AIDS-related complications. Jon Reed Sims (1947–1984) was graduated from Indiana University and then moved to Chicago where he taught music to junior high school students. Frustrated with the job—he wanted students who were as serious about music as he was—he followed a friend to San Francisco and began teaching school in Daly City, just south of San Francisco. Nancy Corporon, Jon’s

longtime friend and the Artistic Director of the Band 1990–1996, told A&U, “I’ll never forget how he described San Francisco after he had visited: ‘It’s hard to explain but this is a city where I belong in a way I’ve never belonged my entire life.’ Jon had not yet come out to me. But somehow I knew that this very special man had found his place in the world.” Although Jon espoused no political agenda—Jon’s sister, Judy Sims Billings, told A&U, “Shortly after he started the band, Jon said to me, ‘I’m not trying to make a political statement, I just want to get people together to have fun making music’”—a little historical context is called A&U • SEPTEMBER 2018

tux photo by Allen Nomura; bass photo courtesy SFLGFB

Clockwise from top left: Jon Reed Sims dressed to conduct the San Francisco Lesbian/Gay Freedom Band in a command performance at the Louise M. Davies Symphony Hall; Jon banging on a bass drum; cover art of a Freedom Band CD

for here. The late 1970s were marked by a handful of advancements for the LGBT community—e.g., the passage of LGBT-protective civil rights ordinances in cities around the country—but they were also marred by extreme prejudice and outright hatred, the most famous example being Florida orange queen Anita Bryant and her disgusting crusade against LGBT rights in Dade County, Florida, which set off similar backlash against LGBT rights around the country. Thus, any act of getting queer folks together was indeed a political act, even if it was just getting together musicians who “march to a different drummer” to have fun making SEPTEMBER 2018 • A&U

music. For four decades now, the non-political-but-visible SFLGFB, the city’s “Ambassadors of Joy” (honored in 2017 by the Board of Supervisors as the City’s “official band”) have played and marched through many of our most exuberant celebrations as well as our darkest days. The Band’s reach and influence has expanded far beyond the San Francisco Bay Area. “Jon once said that the pinnacle of success for his dream would be to play a concert in the Rose Garden at the White House,” Nancy Corporon

told A&U. They haven’t done that yet, but they have performed at Presidential inaugurations (for Bill Clinton in 1993 and 1997) and marched in the official inauguration parades for Barack Obama in 2009 and 2013. The Band has also performed, along with other band members from the Lesbian and Gay Band Association (a national organization of LGBT bands from around the country), at every Gay Games, taking the Band as far as The Netherlands, Germany, Australia, and this year in Paris, and again in four years in Hong Kong. Fur-

stage at the 2000 Millennium March, sharing the stage with Ellen DeGeneres, Judith Light [A&U, July 2007], Madonna, RuPaul, Sir Ian McKellen [A&U, October 1998] and other luminaries (and allies) from the LGBT community. A&U Contributing Photographer Michael L. Kerner has been a member of the Band since 2014. “I joined the band in the spring of 2014 because I wanted to start playing my sax again. I hadn’t played since high school and I missed performing. One day after the Chinese New Year’s Parade,

supporting my trans friends at the Trans March. Whatever we’re doing, we’re fulfilling our mission that Jon Sims gave us from the beginning: To carry the message through music, which, for me, is a pretty awesome way to be gay.” Sims’s legacy also includes founding the San Francisco Gay Men’s Chorus, the first openly gay choral group in America, also celebrating its fortieth anniversary this year. The Chorus’s first official concert took place on December 20, 1978; however, the SFGMC’s first public performance

Under the current leadership of drum major Mike Wong (front, center) and two assistants, the Band marches up Market Street in the 2015 Pride Parade. ther, the Band has performed at all three major LGBT marches on Washington, D.C. In 1987, they performed in a concert called “Let Freedom Ring” at the DAR Constitution Hall. (Again, historical context: the concert, performed at the height of the AIDS crisis, was delayed because ushers at the venue insisted upon wearing rubber gloves.) They performed again, in 1993, at the Warner Theatre in D.C., in a preMarch on Washington concert. And they performed throughout the day on the main

I saw a friend’s post about marching with the Band. I sent him a message and asked him what I needed to do to join. He said to ‘just show up.’ So I did—it had been over twenty years since I had played.” For Michael, though, the Band is more than just an opportunity to play his tenor sax again. “It’s political for me in that, in some small way, I’m doing something as part of the gay community—honoring the Pulse nightclub victims, or protesting this administration at the Women’s March, or

occurred on November 27, at an impromptu memorial at San Francisco City Hall for Supervisor Harvey Milk and Mayor George Moscone, assassinated earlier that day by former Supervisor Dan White, to a crowd estimated at 25,000 to 40,000 mourners who had marched to City Hall from Castro Street for a candlelight vigil. In years since, the Chorus has been hailed for its excellence, performing in venues as far-flung as Carnegie Hall in New York City and the Town Hall in Sydney, Australia, often with A&U • SEPTEMBER 2018

iconic guest artists such as Holly Near, Carol Channing, Michael Feinstein [A&U, July 1996], Sir Ian McKellen, Alan Cumming [A&U, January 2004], Kristin Chenoweth, Joan Rivers [A&U, October 1996], Barbara Cook, and Patti LuPone. They have recorded some three dozen CDs of choral, classical, and pop music, including I Am Harvey Milk (October 2013), which the Chorus commissioned in 2011 and for which they won the thirteenth annual Independent Music Award for Best Soundtrack/ Cast Recording. With over 300 members, SFGMC continues to garner accolades from around the world. Of course, like all the rest of the San Francisco LGBT community, both musical groups were grievously affected by the AIDS epidemic. Sims himself died from AIDS-related causes in 1984. On its website, the SFGLFB honors the 300 musicians, twirlers, flag bearers, tappers, singers and board members who contributed their time and talents to the Band and who “have marched on.” Similarly, the SFGMC honors, again, over 300 members who have passed away, many due to AIDS—known as the Chorus’s “Fifth Section.” On April 14, 2018, the Band and the Chorus joined forces for a 40th Anniversary “Then & Now” Concert (see the video tribute from the concert at the link below) celebrating Jon’s, the Band’s and the Chorus’s legacies. “I know that Jon would be so happy and excited to know that the Band continues to

thrive,” Ms. Billings told A&U, “and that so many people, around the world, find such joy in the Band and Chorus he developed.” Nancy Corporon again: “It’s hard to believe that Jon provokes so much emotion in me all these years after his death. Hard to believe and yet wonderful… Jon was brave, hopeful, and gifted, and he gave others like me the courage to live that hope, and to lead others to it,” Ms. Corporon continued. “He was my musical and moral true north. He made it essential and possible for me to bring my musical talent and my commitment to my LGBT community together in one meaningful package. I loved Jon. Losing him from my life still hurts.” Michael Kerner elaborated further for me when I asked him, “What is the importance of the Band for you?” “They’re part of my family. It definitely wasn’t safe for me to be out during high school in a small farming community, and certainly not at home, so each time we play

showman photo courtesy SFLGFB

“I know that Jon would be so happy and excited to know that the Band continues to thrive....”

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at a school assembly or a ribbon cutting or a Fourth of July parade, I get to be okay with being gay and being visible in a way that I didn’t have when I was young. And I get a lot of love.” Looking back at that first Gay Pride Parade that I attended in San Francisco, maybe that’s why I remember the Band and not much else—the sheer exuberance of the Band members and twirlers and drum major, their obvious love for the music and for their community, their reveling in the love the crowd lavished on them. Perhaps that is Jon Sims’s most enduring and important legacy—community and family gathering together to make a joyous gay noise! For more information on the San Francisco Lesbian/Gay Freedom Day Band, check their website: www.sflgfb.townalive.com. Information on the San Francisco Gay Men’s Chorus can be found at www.sfgmc.org. To view the 40th anniversary tribute to “those who have marched on,” featuring both groups, log on to https:// youtu.be/Izp2fLDtUzc. Hank Trout writes the For the Long Run column for A&U.

An Activist’s

Journey David Mixner Explains How the Constancy of His Principles & Values Strengthened His Fight for Peace, Love and Understanding by Mel Baker Photographed Exclusively for A&U by Alina Oswald

avid Mixner is being blackmailed. It’s 1969 in Washington, D.C. At age twenty-three, David has become one of the national leaders in the Vietnam War Moratorium campaign, but now his sexuality is being weaponized against him. * As a teen David knew he wanted to leave rural New Jersey and become involved in politics. He took his first steps in college in Arizona, organizing for civil and labor rights, later becoming involved in the national civil rights movement. He would go on to organize in battles for LGBT rights, work to end the nuclear arms race, raise funds and awareness to battle AIDS and play a pivotal role in helping elect Bill Clinton to the Presidency. But there were plenty of reversals, betrayals and heartbreaking losses along the way. * Fall of 1969 is a tumultuous time, David is one of the key players in the Moratorium to End the Vietnam War. He has known since he was a child that he was gay and has had only one relationship in college with a man named Kit, who was killed in a car crash just months after they met. He could only attend the funeral as a friend and was unable to share his soul breaking grief with anyone. Now in Washington, D.C., he is working hard on the Vietnam War moratorium, but feeling lonely, he visits one of the clandestine gay bars in the district. David is approached by a man named

Frank. They have sex, but also conversation, romantic dinners in the man’s apartment and outings on the town. Frank claims to be a federal worker, who knows of David’s work and supports what he is doing. He also shares many of his interests and promises that his home will be a sanctuary for David. After a month long, nearly daily romance, Frank says he had to go on a business trip but would meet David in a hotel restaurant when he returned in two days. When David went to the restaurant, two men sat next to him and said, “Frank isn’t coming.” They flashed some kind of I.D. at him and showed pictures of him and Frank having sex. (David was too rattled to examine their I.D.) They told him if he didn’t spy on the anti-Vietnam war movement for them, they would send the pictures to his parents and the press. He had three days to decide. Filled with terror and dread he ran to Frank’s apartment. It was empty, with not a scrap of furniture or a trace of Frank. The building manager claimed that no one had rented the apartment for months. Frank was clearly an operative of some kind. The romance, the love David thought he had found—an illusion. The whole surreal relationship like something you’d read in a bad spy novel. The next three days nearly shattered David Mixner. All he could see was “death or eternal shame.” Everything he’d worked for since he’d become a civil right’s activist in Arizona was on the line. His loving relationship with his family and beloved sister Patsy would be wrecked and worse yet, the publicity could damage the anti-war movement he had become a major player in. He drank, dropped acid, desperately

tried to escape from the terror that engulfed him, with the Moratorium March on Washington just weeks away. David begins to realize that the “agents” who entrapped him would be in trouble if they actually sent the pictures to the press. After all they had either paid Frank to have sex with him or he was an actual federal agent who was having sex with another man, something unlikely to play well in the press of 1969, just months after the Stonewall riots in New York. David decides that if they do expose him, he will take his own life and so with that cold comfort, he waits. * It’s the third day, the Fall of 1969. The two men pull up to David in a car and say, “well?” The 23 year old stares back and says, “send the damn photos, I don’t care.” and walks away. * Non-violent activists believe the power of the oppressor is always about fear of what they “might” do, how they “could” harm you. Those who have fought injustice remind us that a corrupt state can’t actually apply enough force to hold all of the people down, unless they convince people to cage themselves within their own prison of fear. The power of non-violence is expressing moral force by refusing to give into that fear. * David’s activism is based in part on the ideals of Liberation Theology, a strain of A&U • SEPTEMBER 2018

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Roman Catholicism and some Protestant churches, that apply religious faith to aiding the poor and oppressed through political and civic action. “It is a theology that’s not very accepted in the Catholic Church, but basically it is you’re put here on Earth to help others. You can’t become a victim in that process. I’ve never felt like a victim, and I’ve had some very tough times, I just knew that that was my journey and that those were my values and those were my principles. I also learned very early to distinguish between issues and principles. Issues come and go, values and principles never come and go. They are the core of your essence and who you are.” David compares his generation’s struggles with those of young people working today for LGBT rights, the Black Lives Matter movement, the fight against climate change, income inequality and the desperate effort for some kind of gun control policies. He is especially encouraged by the brave young activists from Stoneman Douglas High School in Parkland, Florida who lost seventeen fellow students and teachers in February. “It [the Anti-Vietnam war work] looked very similar to the students at Parkland. The adults had abdicated responsibility, They had given up on the war’s inevitability. Of course, they’re not the ones that are dying. We were the ones dying. Every one of us knew people that had died, they were not doing anything, so we had to get together and take care of our own lives. We literally were given death sentences because of politics.” Death sentence by politics would again become the theme in David’s life when AIDS exploded onto the scene in 1981. “I lost over 300. I did ninety eulogies in two to three years. I lost the people nearest and dearest to me and I’m still here.” One of those he lost was Peter Scott, the man who he describes as the love of his life, who he had built a political consulting agency with in southern California. David watched again as the government—this time under Ronald Reagan—did next to nothing to stop the deaths of thousands. This time of gay men and others affected by AIDS. Once again he marched in the streets, raised money and used his political connections to demand political allies take action. The complex and horrifying

nature of those early days is well documented. The fight against HIV and AIDS continues, but now there is a new crisis. This magazine did a detailed profile on David’s critical work in the July 2002 issue. I suggested that the opiod epidemic resembles the early days of the AIDS crisis. David agrees. “Well it is! It’s affecting a sector of society that has no voice. It is epidemic, especially in poor white areas. In Appalachia, in the Ozark Mountains. It is an expression of desperation, loss of hope of no more dreams, because we have abandoned those people. What no one is dealing with is that the next step in this is a widespread AIDS epidemic in those areas. Because of the sharing of needles.” I asked David what the people dealing with the opiod crisis can learn from the fight against HIV and AIDS? “The thing is what did we learn? Are we willing to care enough about people that we think of as racists and voted for Donald Trump? Do we have the compassion to reach beyond that and to give them voice so they can demand action? “We have to find a way to teach what we

learned in the fight against AIDS to help them find their power, their voice and to help them organize. It is especially—I believe, and it is only my belief—imperative that those of us who went through the AIDS epidemic, who learned to fight back, who learned how to build coalitions, who learned how to put pressure on the political process to extend our hand in those places even though it might not be the most welcomely received and help them survive this horrible epidemic. “We know how to do it!” * If economic and cultural despair among the white working and middle class is a theme of the early twenty-first century, fear was also a theme fo the early eighties, beyond the AIDS epidemic. Fear of nuclear annihilation. * I’ve been interviewing David by phone from my radio studio in San Francisco as he sits in his home in New York. Back in 1986 that distance was spanned on foot by four hundred of my friends and me on the Great Peace March for Global Nuclear Disarmament, where a community we would call Peace City walked from the west coast to New York and then down to Washington, D.C. David had grand visions for the march when he founded PROPeace in 1985. Five thousand people would do the march, in a carefully designed peace village. Major concerts with big name celebrities would be held along the way. Staff would prepare the marcher’s meals and wash their clothes. One of my fellow marchers called it “Club Med” for peace. It didn’t work out that way. David raised a lot of money, but only 1,200 people had signed up and the funding from the big name celebrities who promised to help dried up. PRO-Peace collapsed just days into the march, stranding the marchers in the desert west of Los Angeles. David considers it his biggest personal failure. “I made some bad decisions and some of it based on ego quite honestly, I understand that now and I could have avoided that. I wanted to be liked and please people. I should have been tougher and told people what I thought and I failed to do that.” A&U • SEPTEMBER 2018

The marchers reorganized themselves and more than 500 completed the journey, changing their lives and helping change the zeitgeist around the threat of nuclear war. David learned lessons from that failure, but remembered to hold tight to values and principles, even as the issues changed.

photos by DanCoogan.com

* David was a tireless fundraiser and organizer in the LGBT community for Bill Clinton, whom he helped into the White House. David knew Clinton as a young man, who espoused the same values as Mixner, but whose principles could be compromised over issues, if they threatened political expediency. “I got arrested in front of the White House over ‘Don’t Ask, Don’t Tell.’ I wasn’t sure if I was right or wrong, but in my heart I felt that it was wrong and that a lot of people’s live were going to be affected. What was interesting is, that when I got arrested I got very little support from the community. The Advocate [a major LGBT magazine] put on their cover “David Mixner, Friend of Nobody.” The thing is, I knew that would happen and for me to be a victim and complain about the lack of support was an unrealistic expectation for me.” * Fighting despair is perhaps the activist’s greatest challenge. David admits to being truly SEPTEMBER 2018 • A&U

terrified of the Trump administration. “The fact of the matter is we are in perhaps the most precarious time that I can remember. Always before when we did the anti-war or nuclear stuff, there was a sincere hope that we could make change and never did we doubt that our democracy was safe. I think now there is a real question of whether the institutions that enabled us to protest and to create change will survive this presidency.” Still, he believes the stories of the heroes

Top: Mixner, founder of PRO-Peace, among the crowd at Los Angeles City Hall Bottom: Activists climbing Loveland Pass, Colorado, as part of the Great Peace March, 1986 of the past can help the current generation in this time of great fear. “If you feel you come out of nothing historically, then you are nothing. On the other hand, if you come out of noble and brave and

courageous people, you become noble, brave and courageous. That’s why we can’t have a future until we know our history.” David Mixner remains in the fight and intends to keep doing so. “Right now I’m working on three different fundraisers, a new book, I just finished the Mixner trilogy, three one-man shows. I’ve been in intensive care over the last ten years. But I refuse to sit on the sidelines. “I’m seventy-one years old and making sure that story is being told. But not in a way that makes me a relic. I’m not ready to be put on a shelf, I still have value, we have a tendency in this community [the LGBT community] to put our seniors out to pasture, to not listen to them and certainly not take care of them. “My mind is sharp I have more knowledge than almost anyone in this community, I know our history and I know how to organize. I refuse to be made a relic that they applaud when I go in and don’t listen to me.” I believe him. A man who told the FBI to go fuck themselves when he was twenty-three years old, isn’t likely to let himself be folded between the pages of the history books while he’s still standing up in his cowboy boots. Some of the quotes come from Stranger Among Friends, David Mixner’s autobiography. Mel Baker is a broadcast journalist and former LGBT and anti-nuclear weapons activist. He is married to artist Leslie Aguilar and lives in San Francisco, California.

LifeGuide

The Power of Two

dual regimens show promise in clinical trials

t the International AIDS Conference in Amsterdam last July, ViiV Healthcare shared its latest research with attendees. Part of the research focused on regimens that would reduce the medication burden and subsequent drug exposure for individuals living with HIV/AIDS and on lifelong treatment. Reducing the medication burden would potentially help adherence and a reduced drug exposure might mitigate the impact of side effects. First, promising data emerged from the GEMINI 1 and 2 Phase 3 clinical trials, which were designed to assess the safety and efficacy of a two-drug regimen of dolutegravir (an integrase inhibitor) and lamivudine (an NRTI) compared to a three-drug regimen of dolutegravir and two nucleoside reverse transcriptase inhibitors, tenofovir disoproxil fumarate/emtricitabine (TDF/FTC), in treatment naïve HIV-1 infected adults with baseline viral loads less than 500,000 copies per ml. Primary endpoint results at forty-eight weeks showed the two-drug regimen’s non-inferiority compared to the three-drug regimen. So, efficacy was found to be similar, and no resistance emerged. In addition, the safety profile for the two-drug regimen was consistent with its components’ product labelling; both regimens were well tolerated. Fewer side effects, including kidney and bone problems, were found in the two-drug combo. GEMINI principal investigator Pedro Cahn, Fundación Huésped, Buenos Aires, Argentina, shared the overall conclusion that the two-drug regimen was an effective option for HIV-1 treatment. In a prepared statement, he said: “For the last fifteen to twenty years, the standard of care for HIV has revolved around three-drug regimens. Now that we have more potent drugs, the focus is shifting to tolerability and convenience. The GEMINI studies show that we can get the efficacy of three drugs in a two-drug regimen with the tolerability and drug interaction profile of DTG and 3TC. These are important findings for people living with HIV who will spend their lifetime taking drugs to suppress their virus. The studies have the

potential to expand the treatment paradigm for first-line therapy of people living with HIV.” Researchers working on another set of two-drug regimen studies, SWORD 1 and 2, whose earlier results already helped lead to approval of the combination of dolutegravir (ViiV Healthcare, the global specialist HIV company majority owned by GSK, with Pfizer Inc. and Shionogi Limited as

shareholders) and the NNRTI rilpivirine (Janssen Sciences Ireland UC, part of the Janssen Pharmaceutical Companies of Johnson & Johnson.) under the brand name Juluca, offered 100-week Phase 3 results. The studies are evaluating the safety and efficacy of switching virologically-suppressed people living with HIV who have successfully sup-

pressed their virus from a three or four-drug antiretroviral regimen to a two-drug regimen of dolutegravir and rilpivirine. Data culled from both the SWORD 1 and SWORD 2 studies showed that eighty-nine percent of participants on the two-drug regimen of dolutegravir and rilpivirine for 100 weeks were able to maintain viral suppression, with a viral load of less than 50 copies/mL. No new safety findings were added in the second year of the study. Thirty-four participants withdrew because of adverse events through week 100. Researchers observed a low rate of snapshot virologic non-response, with six participants meeting the confirmed virologic withdrawal criterion. In the “late switch” arm (participants were not switched to the two-drug regimen until week 52), ninety-three percent of participants maintained viral suppression through week 100. While two participants met the confirmed virologic withdrawal criterion, the safety profile of the late switch group was comparable to the early switch group. Thirty participants experienced serious adverse events and fifteen participants experienced adverse events that resulted in withdrawing from the study. In a prepared statement, John C. Pottage, Jr., MD, Chief Scientific and Medical Officer, ViiV Healthcare, said, “As we progress further into a new era of HIV treatment, these 100-week data from the SWORD studies add to the growing evidence base for Juluca and two-drug regimens. The results confirm the ability of Juluca to maintain efficacy over a 100week period and importantly support that the long-term safety profile of this regimen is consistent with the respective labels of the component medicines. This 100week data should provide physicians with further confidence that they may be able to reduce the number of antiretroviral drugs required to effectively maintain virologic suppression in their patient’s HIV.” The 148-week data for SWORD is expected in 2019. Chael Needle is Managing Editor of A&U. Follow him on Twitter @ChaelNeedle. A&U • SEPTEMBER 2018

LifeGuide

Cut the Stigma

black aids institute & lambda legal launch a campaign to combat hiv by Hank Trout discrimination

photos courtesy Lambda Legal

n October 2017, Nikko Briteramos walked into the King of Kuts barbershop in Leimert Park, California, to get a haircut, as he had done several times in the past. To his shock and dismay, the owner of the barbershop refused to cut Briteramos’s hair. He was further shocked to learn the reason for the refusal: another barber in the shop, who had known Briteramos for some time, revealed to the owner that Briteramos is HIV-positive. In a press release dated July 25, 2018, Nikko Briteramos, thirty-four, who has been living with HIV since he was nineteen, said, “My experience at the Leimert Park barbershop was not the first I have had with HIV discrimination. Today, I am speaking out because I would like it to be my last. I want everyone to hear my story so they can better understand how harmful these moments of discrimination can be to those living daily with HIV. The stigma is a result of misconceptions and it needs to end.”

“The facts of this case, as well as the legal claims, are pretty straight-forward: the owner of King of Kuts in Leimert Park refused to cut Nikko’s hair because he is living with HIV, in clear violation of the federal Americans with Disabilities Act (ADA) as well as the California Unruh Civil Rights Act,” said Scott Schoettes, Counsel and HIV Project Director at Lambda Legal. Phill Wilson, CEO and Founder of the Black AIDS Institute (BAI), added, “Black people living with HIV are often confronted with discrimination connected to stigma and misinformation in public places SEPTEMBER 2018 • A&U

of importance within our community. The barbershop is a sacred social space, where Black Americans debate social, cultural and political ideas. HIV discrimination destroys such safe spaces….In addition, as a Black organization, we have to be ever vigilant in confronting injustice. It is a part of our survival. We fight those injustices to survive—and this is a case about injustice.” In addition to filing a Complaint for Declaratory and Injunctive Relief in the United States District Court, Central Division of California, Western Division on Briteramos’s behalf, Lambda Legal has joined forces with the Black AIDS Institute to launch Cut the Stigma, a public education campaign focused on Black communities developed to end such discrimination by dispelling misconceptions about the transmission of HIV, correcting misinformation about HIV, and reducing HIV stigma. The hope is to raise awareness in Black communities about the issues surrounding HIV discrimination, which disconnects Black PLHIV from their communities and relegates them to second-class citizenship within their communities. The campaign will attempt to engage Black barbers and barbershop owners across the country, as well as others in public places of importance to the Black community, to end HIV discrimination. Lestian McNeal of the BAI told A&U, “By refusing to cut Nikko’s hair, and denying him service, this Black-owned barbershop in the heart of South L.A. perpetuated stigma against people living with HIV, labeling him as ‘other,’ dangerous, and undeserving of the same rights and courtesies that people living without HIV are afforded....Black Americans are

disproportionately impacted by HIV and to change that we have to change…the way we talk about HIV within our community. It is our duty to protect the lives of all Black Americans, including in cases where Black Americans are being discriminated against by other Black people.” With the Cut the Stigma campaign, McNeal continued, “Our goal is to train advocates, educate communities and influence law makers so that in the future, zero people are convicted under an HIV criminalization statute in any state in the US and zero Black Americans living with HIV are discriminated against or stigmatized because of their HIV status. [We] will engage Black businesses and business owners, host a series of educational trainings with our BTAN chapters and BTAN affiliated organizations, host in person and on social media events to address the issues facing Black communities, and share stories from survivors of HIV criminalization and discrimination, in order to help Black communities and healthcare providers who serve Black communities learn more about HIV science and treatment (including PrEP and TasP), HIV stigma in Black communities, HIV criminalization laws, and how to protect themselves against these harmful laws.” For more information abour Lambda Legal, log on to: www.lamdbalegal.org; for more information about the Black AIDS Institute, go to: www. blackaids.org. Hank Trout writes the monthly For the Long Run column for A&U.

LifeGuide

A Period of Adjustment a new insurance program can put patients at risk

ntroduced this year, a stealthy new program is leading to big surprises at the pharmacy for patients with expensive meds. It’s called the co-pay accumulator program, and it targets specialty drugs for which drug makers provide co-payment assistance and is catching customers off guard with whopping bills for their drugs. Manufacturers’ co-pay coupons or vouchers could be considered free money, issued by the drug maker to the patient. The money goes toward the patient’s deductible, so that by the middle of the year or sooner, the out-of-pocket maximum would be reached and the plan would then cover the full cost of the prescription. But in 2018 many insurers quietly launched benign-sounding co-pay accumulator programs to patients’ plans, making manufacturer coupons no longer count toward the patient’s deductible or maximum, which, in effect, renders them worthless. To add insult on top of injury, insurance companies, though their middlemen, the Pharmacy Benefit Managers, or PBMs, are still collecting the money from the manufacturers’ coupons, even though they don’t count toward the patients’ deductible. Not all insurers have introduced these plans. Kaiser Permanente, the giant California-based HMO, never accepted manufacturer co-pay cards, with the philosophy that the cards only drive up the cost of drugs. In a recent LA Times article, an insurance industry group said that coupons are simply a “marketing scheme leveraged by Big Pharma to keep drug costs high for everyone.” A letter sent to all state insurance commissioners by the AIDS Institute and other HIV/AIDS organizations in May laid out the difficulties that co-pay accumulator programs put patients in. It read in part: “Unaware of the change, many consumers find themselves reaching a ‘cost cliff’ mid-year. After hitting the maximum on their co-pay card assistance, they pick up their prescription only to discover that the co-pay card has not been counted toward the deductible and they now will owe over a thousand dollars per refill to continue their medication. This likely will cause danger-

ous treatment disruptions midyear as medication becomes prohibitively expensive without warning.” The co-pay accumulator programs affect any patients with very pricey medications, but they are a particular danger for those needing HIV meds, and those relying on PrEP. “For people with HIV or on PrEP, this is how they access their meds,” Carl Schmid, Deputy Executive Director of the AIDS Institute, told A&U. “People are being caught off guard, and the big problem we see is with PrEP, which isn’t covered by Ryan White. Some people have stopped medication because of this.” Schmid said that co-pay accumulator programs are not only bad policy, they’re also stealthy. “[Insurers are] not giving the patients proper knowledge of this. It’s in the small print in the plan contract. They thought their plans would be similar to last year and they didn’t expect the change. There’s a big lack of transparency.” Eric Farmer, HIV Clinical Pharmacist at the LifeCare Clinic at Indiana University Health Methodist Hospital in Indianapolis, tells A&U that patients call his department in a panic when they find out that they suddenly have to pay thousands of dollars at the pharmacy. “I call the pharmacist to make sure it was billed correctly, and it was. And come to find out it was co-pay accumulator. Then the patients are in a pickle. Most of the patients at our office are not able to pay that deductible. They have this benefit they’re paying for through the employer that they’re not able to use.” Farmer says his department has some

ways of helping these patients, but none of the options are very good. One tactic is applying for grant money to pay for the medicine through private companies, including the PAN Foundation and the Patient Advocate Foundation. He’s also encouraged some pharmacies to put patients on a payment plan. The least desirable option, Farmer said, is changing the patient’s regimen, which is especially problematic for patients with HIV. “It’s extremely disruptive, and it’s not evidence based to change a regimen based on financial need. They may have side effects. And it’s not always an option because of interactions.” The worst option to afford meds, one that Farmer doesn’t recommend, is stretching out the medication, which can increase the risk of viral load or resistance. Farmer points out that the co-pay accumulator programs are just the latest blow in a health care system that, even under Obamacare, is still unaffordable for many. “Some people are the working poor, for WalMart, barely above minimum wage, and they don’t have the $25 for their insulin, even with co-pay cards, and after they pay for their meds have fifteen dollars to get food for the week.” Larry Buhl is a multimedia journalist, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl. A&U • SEPTEMBER 2018

LifeGuide

Mosaic Design

Jeannie Wraight APPROACH, a preventive vaccine

study, seeks to address more than one clade

ver the past thirty-plus years, strategies such as Treatment as Prevention, PrEP, syringe exchange, and condom education have succeeded in reducing new HIV transmission rates across the globe. However, a preventive vaccine remains a priority among many researchers, advocates, policymakers and other stakeholders, as a method that is not reliant on human behavior but essential to definitively ending the spread of HIV. Due to the versatile and diverse nature of HIV, a vaccine that would be effective on a global scale in eliciting strong immune responses across all clades (strains) of HIV presents difficulties that researchers are struggling to overcome. However, results of a multi-centered, HIV vaccine clinical trial appear promising. The recently released long-term results of APPROACH, a Phase I/IIa preventive vaccine study, show a favorable safety profile and a robust immune response to a mosaic-based HIV preventive vaccine made by Janssen Pharmaceuticals. Investigators found the viral vectored mosaic vaccine Ad26.Mos.HIV to have no serious vaccine-induced adverse events, with the vaccine eliciting robust humoral and cellular HIV-1 immune responses in study participants. Healthy participants (aged eighteen to fifty) were enrolled in the APPROACH study at twelve clinics in South Africa, Rwanda, Uganda, the U.S. and Thailand. 393 HIV-negative participants received various vaccine and booster combinations, or placebo, in a total of eight separate study arms. The prime vaccine is a viral vector vaccine based on adenovirus serotype 26 (Ad26). This vaccine is unique as it includes three HIV genes with a mosaic design, including sequences from numerous HIV subtypes. This design could allow for a response across most clades of HIV, making it potentially effective as a global vaccine. Across the seven arms (the eighth was placebo) participants received four injections. The first two injections were prime doses of Ad26.Mos.HIV (at weeks SEPTEMBER 2018 • A&U

0 and 12). The 2 booster vaccinations, at weeks 24 and 48, included Ad26.Mos.HIV, or a separate mosaic component, and/ or a clade C HIV gp140 envelope protein adjuvanted by aluminum phosphate. After the last vaccination, researchers found that most of the study participants developed vaccine-induced antibody and cellular immune responses. This means that the immune system recognized the harmless fragments of HIV that were a part of the vaccine as a threat, and responded by releasing antibodies and by generating cellular immune responses. Indeed, antibodies alone may not be enough to prevent HIV infection—a cellular response may be necessary to destroy infected cells to prevent the spread of HIV from one cell to another and the virus from taking hold in the body. Importantly, most of these cellular responses as well as the antibody responses were still present one year after the last vaccination. Degrees of response varied across the seven arms but were largely consistent. In addition to the 393 human participants, a parallel study was performed in rhesus monkeys where the monkeys received one of five different vaccine regimens. The regimen that was most effective in humans also showed the highest rate of immune response in monkeys and a sixty-seven percent protection rate against a simian humanized version of HIV (SHIV). Based on the initial safety and immunogenicity results of APPROACH and the protection in monkeys, a second study called Imbokodo has been initiated in a total of twenty-six sites in five Southern African countries: South Africa, Malawi, Mozambique, Zambia, and Zimbabwe. In Imbokodo, researchers are studying whether the vaccine regimen that showed the most

immunogenicity in the APPROACH study is actually protective against HIV infection. A total of 2,600 sexually-active women ages eighteen to thirty-five are currently being enrolled in the study. (This column covered the Imbokodo study in the March 2018 issue.) Participants will be given four doses of the prime vaccine and two boosters over a twelve-month period. The results of the Imbokodo study are expected in 2021. Data on the APPROACH study collected one month after the last vaccination, was published online by The Lancet on July 6, 2018. The long-term data—one year after the last vaccination—was presented at the 22nd International AIDS Conference (AIDS 2018) in Amsterdam, also in July. Commenting on the latest results, Janssen’s head of Viral Vaccines programs, Hanneke Schuitemaker, said: “This is one of the only times that long-term immune response data for a candidate HIV vaccine have been presented. We will need to see if the Imbokodo study confirms the potential observed in the APPROACH study, but we are cautiously optimistic. The world urgently needs an effective preventive HIV vaccine, and we hope that we are finally on the road to achieving this goal!” 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.

E R U T CUL S THE

D I A OF

BOOKS

Stonewall Strong: Gay Men’s Heroic Fight for Resilience, Good Health, and a Strong Community by John-Manuel Androite Rowman & Littfield

tonewall Strong is in many ways quite remarkable. John-Manuel Andriote has combined his own personal story of being a PLWHIV with an amazingly detailed examination of how the LGBTQ community refused to lie down and die and instead formed a genuine community to care for one another, to fight our government’s indifference, to combat pharmaceutical companies’ greed, and to erase the stigma that, unfortunately, continues to attach to HIV/AIDS to this day. This is a testament to “the personal is political” like no other I’ve read. Without meaning at all to disparage or belittle Mr. Andriote’s personal story as an HIV-positive journalist—which is in turns fascinating and heart-wrenching—this reader found most value in the chapters that comprise the section entitled “The Heroic Legacy.” These six chapters form a primer on Gay American History from the very early twentieth century through the winning fight for marriage equality. Although these chapters do not focus exclusively on the AIDS crisis, they provide an absolutely invaluable guide to how we got on, how even during times when our very existence was illegal and threatened, we managed to survive (and at times thrive) in a world hostile to our very lives—and how our fierce diva-like will to survive informed our response to the crisis.

Citing such luminaries as Harry Hay and the Mattachine Society, his more radical counterpart Frank Kameny, Arnie Kantrowitz, the Rev. Troy Perry, Dr. Howard Brown, Larry Kramer, Peter Staley, Cleve Jones, and Evan Wolfson, Andriote celebrates the power of coming together to redefine society’s “norms” and to create our own space in that society. From the Mattachine Society’s extremely polite suit-and-tie blouse-and-skirt protests in front of the White House in 1965; to the impact of The Boys in the Band on our ability to frame the discussion of our own lives; to the fight to get the American Psychiatric Association to declassify homosexuality as a “mental disease”; to the effects of the Stonewall riots on our perception of ourselves and the birth of Gay Pride; to the fierce and fiery Larry Kramer and Peter Staley and the incomparable effect that ACT UP had on combatting the epidemic; and finally through the long fight for marriage equality, Stonewall Strong provides the kind of history lesson that every LGBTQ person should be made aware of. It is a finely detailed account (from Andriote’s interviews with just about everyone of any prominence in twentieth-century gay history) that is scrupulously researched and damn well written. Another chapter that I, as a long-term HIV survivor, found most interesting is entitled “Defining ‘Old’ for Ourselves.” In one of the most accurate descriptions of the years of the epidemic that I’ve read, Andriote says, “For too many of us the epidemic heaped yet more trauma on our adult lives on top of what we grew up with as gay boys. AIDS was all our collective bullies rolled into one big sucker punch to our hearts and psyches.” For me, that captures quite well the pain of the Plague Years. Andriote quotes Dr. Brian de Vries, professor of gerontology at San Francisco State University: “We are all survivors at some level by virtue of making it this far, and HIV-positive survivors are at a whole other level.” To which, I can add only a hearty “Hear! Hear!” —Hank Trout

A Piece of Me with HIV by Shyronn Jones CreateSpace

Piece of Me with HIV is a compelling and valuable document of one young black woman’s journey through an HIV diagnosis. Shyronn Jones

shares a frank and riveting tale of what it’s like for a young woman brought up in the housing projects of New York City to go from a girl who carefully guarded her virginity to a girl receiving the news of a life-changing sexually transmitted virus. She shares an honest tale of that dichotomy, what led a girl brought up with some strong female role models down the wrong path. There are certainly challenges in Jones’ young life. There’s an absent father in prison for his crimes, life in the projects, the early loss of her mother to kidney disease, the later loss of her fiercely independent and strong grandmother, another figure central to her upbringing. Also, the streets around Jones are rife with crime and the ever-present drug trade. Her account of her life and surroundings is not sentimental; it is real. Few practiced authors can write with this kind of authenticity. (The only quibble I have with the book is that it needs a thorough editing to correct some of the mistakes that often haunt self-published books.) In order that we may document the HIV/AIDS crisis fully, all of our stories must be told. It’s not often enough that we hear stories from a perspective like Shyronn’s. But that alone does not make this all too short book important. Jones is now an active and important HIV advocate and activist in Atlanta. This piece must be a valuable tool in reaching young, urban girls, just like herself, who would be able to see their own stories within its pages and be encouraged to protect themselves from HIV and to get tested. Advocates like Jones, reaching out to these same communities, or any community, should take advantage of a resource like this—the compelling tale of one young person’s life and the changes that an HIV diagnosis can bring. —John Francis Leonard Hank Trout writes the For the Long Run column for A&U. John Francis Leonard writes the Bright Lights, Small City column for A&U. A&U • SEPTEMBER 2018

A Calendar of Events VERASPHERE: 25 Years of Love, Art & Joy

elebrating twenty-five years of creating unforgettable art together, artists and provocateurs David Faulk (aka “Mrs. Vera Newman”) and Michael Johnstone present VERASPHERE: 25 Years of Love, Art, and Joy, a comprehensive retrospective exhibit of the prolific pair’s beloved work. The exhibit opens on September 21, 2018 at the Harvey Milk Photo Center with a Gala Opening Reception from 6:00 to 9:00 p.m. and runs through October 14, 2018. The exhibit, curated by HMPC’s Dave Christensen and Thomasina DeMaio of Art Saves Lives, will feature many of the costumes created by David for Mrs. Vera and others (including the Verasphere Pride Project, which costumes a contingent of revelers in each years’ SF LGBT Pride Parade), photographs of Mrs. Vera and others taken by Michael, and, for the first time in a Verasphere exhibit, paintings by David. This show should confirm the pair’s most potent, most important impact—they have spread unmitigated joy throughout the community and worldwide. “This show is a timeline of our collaboration over twenty-five years, from intimate portraits on gallery walls, costumes and community workshops, to whimsical street art that generates thousands of smiles,” Michael told A&U. He continued, “The show features examples of varied medi-

SEPTEMBER 2018 • A&U

ums we’ve used over time, beginning with the Daybook series photos, costumes for the series that led to the concept for the Verasphere Pride Project. The works are all intrinsically linked by our mutual love of color and being in the moment.” VERASPHERE: 25 Years of Love, Art & Joy promises to be most colorful, most lively, most joyous gallery exhibit of the Fall. You will be amazed and mesmerized by the incredibly colorful, joy-affirming works by these two phenomenal artists. For more information, log on to www.harveymilkphotocenter.org. Join the Verasphere Facebook page at www.facebook. com/groups/299728543438767/.

continued from page 33

Alliance

ers. Johanne Morne, Director of NYSDOH AIDS Institute, talked about “making that promise to ourselves, not about achieving perfection but being the best that we can be” and about “the ability to create change” as well as “the role of the AIDS Institute in the fight” against HIV and AIDS, ending the opioid epidemic, hepatitis C, and the power of peer work “to build futures.” Hon. Mark Levine, NYC Councilmember, took time to thank everybody, in particular the supporters, the families and friends of the graduates, for their role and reminded that we “need peers on the frontline to end the epidemic.” He also reminded, “These are really challenging times in our country. We Some of the PREP Cycle 50 graduates photographed before graduation, at the Midtown office of Alliance, have to fight back. You give me hope.” after they gave their final presentations and speeches. Left to right (top row): Markeya R., Christian V., Elliot In his closing remarks, Patrick Maher, G., Alan W., Francisco P.; (bottom row): Danyelle R., Premelia K., Andrea W., Ms Joyce Esq., Alliance Board Secretary, with a nod to the graduates, offered a quote Most of them ended up at Alliance training education program twice a year, by the ancient Chinese philosopher, Lao referred by a friend or by someone they usually in spring (March through May), Tzu. It says, “if you don’t change direction, knew. All of them were eager and happy and then again in the fall (September you may end up where you’re heading.” He to graduate, and held tightly big dreams through November), for more than two for their future—to work for Alliance as decades. This past May, Alliance celebrated then shared his belief that “together we will make a positive change for those in need.” peer educators, to start their own HIV its PREP Cycle 50 graduation ceremony— Also sharing a few thoughts were Duke and education programs, to start a new job and begins its fifty-first class this fall. also David Nager, Director of Photography at that they’d been offered in part because Duke has never missed a PREP gradAlliance, as well as prior graduates. they’re taking the PREP program, mostly, uation ceremony. “We are a community Nager, who has photographed almost to have fun at and enjoy their graduation agency that has been fighting to distinguish everybody at Alliance over the years, ceremony. All of them were emotional and ourselves not only as a service provider but offered a visual, emotional look back at thankful, in particular to Ms. Joyce (Joyce as a center for peer training,” she comments. the amazing evolution of members of Myricks, trainer at Alliance) who had guid“The training is something that we have Alliance over the years—present graduates ed them throughout the PREP program. been doing for twenty-five years, but the “Every graduation is extremely emotionpublic perception is that we’re a service agen- as well as past graduates, some of them now full-time employees. There was also a al for me, because I get really invested in cy, and so it’s been very hard for us to get video with interviews of people who have the trainees that come here,” Myricks says. resources to support the training work that graduated in previous cycles. “I want so much for the trainees to see [in we do. We actually created an organization The graduation ceremony was, indeed, themselves] what I see in them, [because] called Peer Training, Inc. And the mission of a wonderful celebration. As Duke deI see so much potential in them. And this PTI is exclusively around offering peer trainscribes it, the event is “a way for us to take is my life’s work. I heal them, but to be hon- ing and placement of peer graduates into a look back to where we came from and a est, being with them heals me every day. both part-time and full-time employment. look ahead to growing the impact of peer I’m a recovering addict, and every day they And so, the fiftieth cycle of graduates was a educators as community leaders in public validate my reason for staying clean.” She milestone for us, and we’re very excited and came to Alliance some ten years ago, to take proud to be a part of this work.” She reminds health battles across the city.” Looking ahead to the next 50 peer the class herself and she never left. “The that a significant portion of Alliance’s work training cycles, Alliance is accepting Alliance for Positive Change is for anybody is towards ending the AIDS epidemic, which applications for the Fall 2018 training, a who’s recovering from addiction. [Also,] the organization tries to achieve by creatpre-requisite towards NYS Peer Certificaindividuals who come here [and] who are ing a peer workforce. “And so, the fiftieth tion. Alliance continues to train and place HIV-positive often say they feel that this was graduation cycle was a beautiful illustration graduates in peer internships, and partthe first time that they can exhale, because of the impact that we’re having, helping to time and full-time employment. you’re walking around feeling like you can’t transform lives in New York City.” breathe, because you don’t want anybody to know your status, and here that stigma doesn’t exist. And once you can get rid of that, you can start discovering other positive things about yourself and investing in other things about yourself.” Alliance has offered the PREP peer

The graduation took place on May 29, at Mount Sinai Medical Center in New York City, and was a true graduation ceremony. Graduates got to wear caps and gowns. Their families, friends and colleagues got to attend and celebrate with them. There were also a few keynote speak-

Learn more about Alliance’s peer training, workforce development, and job placements at: www.alliance.nyc. Alina Oswald, Arts Editor, is a writer, photographer and the author of Journeys Through Darkness: A Biography. Visit her online at alinaoswald.com. A&U • SEPTEMBER 2018

SEPTEMBER 2018 â&#x20AC;¢ A&U

Survival Guide

[a portrait by sean black]

“I believe our struggle for justice must be grounded in deep love for our communities, for each other, and a vision for liberation that understands our fates are intertwined. And HIV advocacy has always been about celebrating joy along the way—the movement that plays together stays together!”

—Naina Khanna

A national speaker, trainer, and advocate, Naina Khanna has worked in the HIV field since 2005, following her HIV diagnosis in 2002. She currently serves on the Board of Directors for AIDS United, the National Steering Committee for the US People Living with HIV Caucus, as a member of the Women’s HIV Research Initiative, and served on President Obama’s Advisory Council on HIV/AIDS (PACHA) from 2010–2014. Prior to working in HIV, Naina co-founded and served as National Field Director for the League of Pissed Off Voters, a progressive national organization working to expand participation of young people and communities of color in electoral politics. She is currently pursuing a PhD in Medical Sociology at the University of California–San Francisco. Twitter: @nainadevi

Sean Black is a Senior Editor of A&U. 56

A&U • SEPTEMBER 2018

HOW DO WE HELP STOP HIV? A. PREVENT IT. B. TEST FOR IT. C. TREAT IT. D. ALL OF THE ABOVE. Learn how it all works together at HelpStopTheVirus.com Â© 2015 Gilead Sciences, Inc. All rights reserved. UNBC1856 03/15

In adults with HIV on ART who have diarrhea not caused by an infection

IMPORTANT PATIENT INFORMATION This is only a summary. See complete Prescribing Information at Mytesi.com or by calling 1-844-722-8256. This does not take the place of talking with your doctor about your medical condition or treatment.

What Is Mytesi? Mytesi is a prescription medicine used to improve symptoms of noninfectious diarrhea (diarrhea not caused by a bacterial, viral, or parasitic infection) in adults living with HIV/AIDS on ART. Do Not Take Mytesi if you have diarrhea caused by an infection. Before you start Mytesi, your doctor and you should make sure your diarrhea is not caused by an infection (such as bacteria, virus, or parasite).

Possible Side Effects of Mytesi Include:

Tired of planning your life around diarrhea?

Enough is Enough Get relief. Pure and simple. Ask your doctor about Mytesi. Mytesi (crofelemer): • Is the only medicine FDA-approved to relieve diarrhea in people with HIV • Treats diarrhea differently by normalizing the flow of water in the GI tract • Has the same or fewer side effects as placebo in clinical studies • Comes from a tree sustainably harvested in the Amazon Rainforest What is Mytesi? Mytesi is a prescription medicine that helps relieve symptoms of diarrhea not caused by an infection (noninfectious) in adults living with HIV/AIDS on antiretroviral therapy (ART). Important Safety Information Mytesi is not approved to treat infectious diarrhea (diarrhea caused by bacteria, a virus, or a parasite). Before starting you on Mytesi, your healthcare provider will first be sure that you do not have infectious diarrhea. Otherwise, there is a risk you would not receive the right medicine and your infection could get worse. In clinical studies, the most common side effects that occurred more often than with placebo were upper respiratory tract (sinus, nose, and throat) infection (5.7%), bronchitis (3.9%), cough (3.5%), flatulence (3.1%), and increased bilirubin (3.1%). For Copay Savings Card and Patient Assistance, see Mytesi.com

Please see complete Prescribing Information at Mytesi.com. NP-390-9

RELIEF, PURE AND SIMPLE

• Upper respiratory tract infection (sinus, nose, and throat infection) • Bronchitis (swelling in the tubes that carry air to and from your lungs) • Cough • Flatulence (gas) • Increased bilirubin (a waste product when red blood cells break down) For a full list of side effects, please talk to your doctor. Tell your doctor if you have any side effect that bothers you or does not go away. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Should I Take Mytesi If I Am:

Pregnant or Planning to Become Pregnant? • Studies in animals show that Mytesi could harm an unborn baby or affect the ability to become pregnant • There are no studies in pregnant women taking Mytesi • This drug should only be used during pregnancy if clearly needed A Nursing Mother? • It is not known whether Mytesi is passed through human breast milk • If you are nursing, you should tell your doctor before starting Mytesi • Your doctor will help you to decide whether to stop nursing or to stop taking Mytesi Under 18 or Over 65 Years of Age? • Mytesi has not been studied in children under 18 years of age • Mytesi studies did not include many people over the age of 65. So it is not clear if this age group will respond differently. Talk to your doctor to find out if Mytesi is right for you

What Should I Know About Taking Mytesi With Other Medicines? If you are taking any prescription or over-the-counter medicine, herbal supplements, or vitamins, tell your doctor before starting Mytesi.

What If I Have More Questions About Mytesi? For more information, please see the full Prescribing Information at Mytesi.com or speak to your doctor or pharmacist. To report side effects or make a product complaint or for additional information, call 1-844-722-8256.

Rx Only Manufactured by Patheon, Inc. for Napo Pharmaceuticals, Inc. San Francisco, CA 94105 Copyright © Napo Pharmaceuticals, Inc. Mytesi comes from the Croton lechleri tree harvested in South America.