A&U May 2019 by A&U: America's AIDS Magazine

MAY 2019 • ISSUE 295 • AMERICA’S AIDS MAGAZINE

MODELING ADVOCACY

Lillibeth Gonzalez Helps Those Over 50 Thrive with HIV

TALK THERAPY Scott Kramer Destigmatizes the Convo About HIV

plus

•Artist Sasja van Vechgel •Actor Adam B. Shapiro •Jeannie Wraight on HIV Remission News

Mj Rodriguez The Pose Star Helps Bridge HIV Awareness Then and Now

IMPORTANT FACTS FOR BIKTARVY®

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

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including:

BIKTARVY may cause serious side effects, including: } Those in the “Most Important Information About BIKTARVY” section. } 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 (6%), and headache (5%).

} 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 if you: } Have or have had any kidney or liver problems,

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.

including hepatitis infection. } Have any other health problems. } 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. } 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. Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.

HOW TO TAKE BIKTARVY

Tell your healthcare provider about all the medicines you take:

Take BIKTARVY 1 time each day with or without food.

} Keep a list that includes all prescription and over-the-

counter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

} BIKTARVY and other medicines may affect each other.

Ask your healthcare provider and pharmacist about medicines that interact with BIKTARVY, and ask if it is safe to take BIKTARVY with all your other medicines.

Get HIV support by downloading a free app at

MyDailyCharge.com

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, KEEP ASPIRING, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. Version date: December 2018 © 2019 Gilead Sciences, Inc. All rights reserved. BVYC0102 01/19

KEEP ASPIRING.

Because HIV doesn’t change who you are. BIKTARVY® is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in certain adults. BIKTARVY does not cure HIV-1 or AIDS.

Ask your healthcare provider if BIKTARVY is right for you. To learn more, visit BIKTARVY.com.

Please see Important Facts about BIKTARVY, including important warnings, on the previous page and visit BIKTARVY.com.

c o n t e n t s May 2019

32 Cover Mj Rodriguez Talks with Sean Black About Helping to Bring HIV Realities of the Early Epidemic to Life on the Hit TV Show Pose

Departments

Features 24 Gallery Photographer Sasja van Vechgel Documents How Transgender Women in Indonesia Navigate Life 28 Love, Loss & Rage Writer & A&U’s Fiction Editor Raymond Luczak Creates a Stunning Emotional Landscape in Flannelwood

Frontdesk

Digital Footprints

NewsBreak

Ruby’s Rap Ruby raps with advocate Dale Guy Madison

viewfinder 8 For the Long Run

38 To Be Continued... Advocate Lillibeth Gonzalez Wants to Help Others Living with HIV to Thrive Beyond 50

Bright Lights, Small City

Brave New World

Just*in Time

Powers for Good

40 A Beautiful Heart With Heaps of Compassion, Actor Adam B. Shapiro Helps Dismantle HIV Stigma

lifeguide

20 Fiction Meet Clay Brown by Christina Renee Milliner cover photo by Sean Black

Under_Reported

Destination: Cure

The Culture of AIDS

Lifelines

Role Call

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A&U Frontdesk

AMERICA’S AIDS MAGAZINE issue 295 vol. 28 no. 5 May 2019 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner Managing Editor: Chael Needle Senior Editor: Dann Dulin Editors at Large: Chip Alfred, Hank Trout Special Projects Editor: Lester Strong Arts Editor: Alina Oswald Poetry Editor: Noah Stetzer Fiction Editor: Raymond Luczak Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: T.J. Banks, Sean Black, Larry Buhl, Ruby Comer, George M. Johnson, John Francis Leonard, Candace Y.A. Montague, Connie Rose, David Rosenberg, Candy Samples, Corey Saucier, Justin B. Terry-Smith, 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, Scot Maitland, Nancy Perry, Alex Ray, 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 • Patricia Nell Warren 1936–2019 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. ©2019 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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Dancing in the Dark

aybe I should be writing this editorial next month (the June issue is all about LGBTQ Pride after all!). But importantly, May, as far as I’m concerned, is about memories…I’m filled with nostalgia as I am getting ready for my 35th Reunion (Brown University, Class of 1984). Just remembering the music from that year—Talking Heads, Human League, Eurythmics, even Madonna come to mind. Hip hop was barely a musical genre, MTV was a nascent TV network, Michael Jackson and Duran Duran were topping the charts, Steve Jobs was still in high school, and Basquiat was painting when he wasn’t dating the above-mentioned Material Girl…and AIDS in the U.S., according to reports, had claimed many thousands. The disease wasn’t exactly a lyrical fixture in popular music. Billy Joel’s “We Didn’t Start The Fire,” TLC’s “Waterfalls” and Prince’s “Sign O’ The Times” had yet to be written, but musical pioneers Klaus Nomi, Sylvester, Patrick Cowley, the B-52s’ Ricky Wilson and Freddie Mercury had already died or were HIV-positive. HIV was definitely killing musical artists everywhere. As any young gun who put down the books at midnight to hit the dance floor at one of the hopping clubs in the seedy warehouse district near College Hill, I had heard of AIDS—it was on every young sexually active American’s mind, some more than others perhaps. But it couldn’t be in my bedroom. And yet it was. By my own recollection, my first boyfriend at Brown was positive…and hence the source of my own seroconversion. Nowadays, in the age of U = U and PrEP, when these new prevention methods and treatment regimens are accessible (sometimes unevenly), the first thought is certainly no longer death, but, rather, life. It should be life. Younger artists and musicians are on board. Witness 2019’s twenty-fifth anniversary of M•A•C’s Viva Glam campaign featuring Troye Sivan and model

Jacob Bixenman (Sivan’s boyfriend), RuPaul’s Drag Race season 10 winner Aquaria, rapper Princess Nokia, Mari Malek, Dara Allen, Eileen Kelly, Deja Foxx, Lea T, Alex Mugler, Parker Kit Hill, as well as M•A•C artists Bradley Miller, Nisha Sirpal, Kiekie Stanners, Daiana Gonzalez, Allen Li, Carlisha Gizelle, and Schuron Womack. The fight against AIDS is a study in contrasts. And this is why it is important to keep comparing then and now, the early years and 2019. FX’s show Pose does this brilliantly. It takes place in the later half of the first decade of the AIDS epidemic, but it is written with the sensibility of what we know now. May’s cover story subject, Mj Rodriguez, lovingly interviewed and photographed by Sean Black, is one of the stars of the show about ball culture and is also bringing advocacy to fans today: “Regarding sexual intimacy I think that it is important to know your status and get tested. Be responsible. I think then you should also always share your status with your partner before you indulge in anything....” Sharing what we know about our bodies before sharing our bodies is empowerment in action. Sharing knowledge about the realities of HIV/ AIDS in the public square is also important. The artists, writers, and advocates we feature in this issue— photographer Sasja van Vechgel, writer Raymond Luczak, actor Adam B. Shapiro, activist Lillibeth Gonzalez, performer Dale Guy Madison, and therapist Scott Kramer—all have stepped forward to disseminate information that is vital to our health and to keep the conversation going. May can be Pride Month, too. I am proud to offer the forum that is A&U. 2021 will be our thirtieth year of publication and, although we will be looking forward, we will never forget our past.

DAVID WAGGONER

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The March cover story featured an interview by Candace Y.A. Montague with singer Evvie McKinney, who supports the Black AIDS Institute. Vibrant photography by Sean Black captured her strong sense of self.

mosttweeted Chael Needle’s tribute to former A&U columnist Patricia Nell Warren brought out fans who praised her fiction writing as well as her advocacy for LGBTQ and human rights.

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Our fiction offering, “Russell,” written by Geer Austin and selected by Fiction Editor Raymond Luczak, created a portrait of an unforgettable memorial service and the lyricism of the prose resonated with readers.

McKinney photo by Sean Black; Warren photo by John Selig

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@au_americas_aids_magazine A&U • MAY 2019

Lean on Me

t’s tiresome manipulating a cane in one hand and an umbrella in the other. It requires great dexterity and patience, especially when entering a cab or a bus, or navigating a revolving door—dexterity and patience I often find it difficult to muster! Now that I’m no longer confined to a wheelchair, I’m relying on my cane more than I did during the previous year or so. We’ve had an unusually rainy, cold, dreary winter and spring here in San Francisco, weather that has seriously tested my cane-and-umbrella skills. Using my cane alone is not much of a problem. Because I first started needing a cane after my headlong fall in 2004 (causing three herniated spinal discs and destroying the cartilage in my left knee) and have used one ever since, my cane is more like an extension of my right arm than an encumbrance. I’ve stopped forgetting and leaving it in public places—if pressed, I would confess that right after first getting the cane, I left it hanging on the back of the stall door in the men’s restroom at the Target store downtown. I’ve also stopped using it as a pointer. I think the last time I used the cane to guide someone’s attention to something was in the museum store at the Guggenheim Museum in New York City, October 2012 (don’t ask). Until I started using a cane myself in 2004, I hadn’t really noticed just how many of my fellow San Franciscans use one. Of course, during the 1980s and early 1990s here, when HIV raged uncontrolled, the sidewalks of Castro Street and Polk Street seemed to be crowded with cane users. During the Plague Years, one could see a healthy, good-looking 25-year-old friend out one weekend, bar-hopping South of Market or dancing till very late hours at the End-Up, and then see him a few weeks later, leaning precariously on a cane, slowly plodding down Castro Street. Often that same man would disappear from sight altogether just a couple weeks later. Walking canes were thus often warning signs, both useful tools and ugly reminders of just how much the virus could take away from us.

Hank Trout a trusted tool, an ugly reminder

Once the “cocktails” of effective medications became available in 1996 and nearly all of us began taking one of them, canes became less prevalent in our neighborhoods. For many, the cocktail replaced a cane; for others, it prevented the need for one. As we got healthier as a community, fewer of us needed canes. Hundreds of canes, I’m sure, got relegated to closets for safekeeping, for possible later need, or contributed to Community Thrift or the Goodwill, or donated to one ASO or another for redistribution. I’ve noticed, however, that as the gay population of San Francisco ages—some sixty percent of men living with HIV in San Francisco are fifty years old or older—canes are, shall we say, making a comeback. The canes in our closets are once again calling out, “Lean on me!” This time, however, the cause is aging, either with or without the virus. As the AIDS Generation enters its middle-to-late age, as we grow grayer, our legs are losing muscle mass. Some of us who used to take great joy in striding quickly up the many hills in this city are now having difficulty even climbing onto one of the light rail trains or buses. Hence, and for other reasons, the resurgence in the number of canes. As I’ve written here before [“The View from Down Here,” A&U, July 2018], one of the first things I noticed about being in a wheelchair was how much friendlier and quicker-to-smile people are when you greet them from a wheelchair—99 times out of 100 they smiled, waved, and said “Hi!” Well, boy oh boy are things different when you’re walking with a cane! I’m still the same disabled elderly person out of the chair, but people’s response when I greet them

when I’m out is much different. They revert to their closed-mouth frowning look of annoyance that someone dared to speak to them, and they pass without a word. I think it has to do with fear levels—seated in a wheelchair, I’m absolutely zero threat to anyone, but upright with a cane, even this crippled sixty-sixyear-old is perceived, apparently, as a potential threat. I miss the friendliness I encountered in the wheelchair. But not enough to make me want to return to it! The wheelchair is just so much more restricting, limiting the number of places I can go to and the number of things I can do. As inconvenient as it can be sometimes, the cane is actually very liberating. Now, if it would just stop raining for a while! 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 forty-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter. A&U • MAY 2019

illustration by Timothy J. Haines

NEWSBREAK Organizing for Power: Road to 2020 On April 1, 2019, the Positive Women’s Network-USA (PWN), a national network of HIV-positive women and people of trans experience, unveiled a new year-long, nonpartisan electoral organizing strategy of voter engagement and mobilization. Organizing for Power: Road to 2020 (OFP 2020) plans to train and support teams led by women and trans folks living with HIV to assess where candidates stand on issues critical to the HIV community; to analyze ballot measures, initiatives, and policy proposals that affect HIV-positive folks; and to register, engage, and mobilize voters in the field and online. OFP 2020 Training will begin with an intensive bootcamp, augmented by monthly web-based training and ongoing coaching during the 2020 election cycle to emphasize issues important to people living with HIV. In their press release dated April 1, PWN-USA emphasized, “Elections have consequences. Following the 2016 election, conservative lawmakers have taken full advantage of their newfound power to drastically roll back human rights at the state and federal level...to disenfranchise and silence those who challenge their grip on power—Black and Latinx communities, women, LGBTQ folks, immigrants—decimating access to the most basic needs like health care, housing, and food.” “The HIV community is a powerful voting bloc… Our members proved during the 2018 midterms that they were committed to making sure the voices of communities of color and low-income communities are heard,” explained Naina Khanna, PWN-USA’s executive director. “We are incredibly excited to be able to provide even more intensive training, coaching, and hands-on support to scale up our members’ impact on more races in crucial parts of the country.” Applications for OFP 2020 teams are now open; the deadline for applying is May 31 of this year. Those interested in participating must apply in teams that include leadership and involvement of PWN’s priority constituencies—Black and Latinx cisgender and transgender women living with HIV—and demonstrate their commitment to PWN’s policy priorities and values. Since its founding in 2008 by twenty-eight diverse HIV-positive women leaders, PWN-USA has applied a gender lens to the domestic HIV epidemic grounded in social justice and human rights. Their goal is to inspire, inform, and mobilize women living with HIV to advocate for changes that improve people’s lives and uphold their rights. In addition to federal advocacy, PWN-USA supports regional organizing and leadership development at a local and state level. For more information about PWN-USA and specific instructions for applying for OFP 2020, visit: www.pwn-usa.org/ofp-2020.

Positive Transplant On March 25, 2019, surgeons at Johns Hopkins University in Baltimore performed the world’s first kidney transplant from a living donor with HIV to a recipient also living with HIV. Prior to this procedure, organs donated to HIV-positive recipients had come from deceased donors with HIV. There have

A&U • MAY 2019

newsbreak been more than one hundred such kidney and liver transplants since 2016, according to the Organ Procurement and Transplantation Network. However, the kidney transplant at Johns Hopkins was the first to take a kidney from a living HIV-positive donor. Before 2013, the United States had instituted a moratorium on using HIV-positive organs for transplantation. The HIV Organ Policy Equity (HOPE) Act passed by Congress in 2013 effectively ended that moratorium, authorizing the transplantation between matched pairs in which both the donor and recipient are HIV-positive. Such transplants are currently allowed only among participants under a clinical trial at an approved organ transplantation center, according to guidelines issued by the National Institutes of Health in 2015. End-stage kidney and liver diseases are on the rise among people living with HIV as patients with well-treated HIV age. In the first generation of people affected by AIDS, the need for organs available for transplantation has intensified, but donor organs are in short supply. Doctors at Johns Hopkins estimate that there could be as many as 10,000 people in the United States living with HIV on dialysis and with end-stage kidney disease who may need a transplant. Expanding the pool of available organ donors to include whose who are HIV-positive will likely reduce the waiting-for-an-organ period for HIV-positive recipients. As of March 2019, more than 113,000 people are on the organ transplant waiting list in the United States. “As patients waiting for a transplant see that we’re working with as many donors as possible to save as many lives as possible, we’re giving them hope,” observed Christine Durand, MD, associate professor of medicine and oncology at Johns Hopkins, in a news release. The HOPE Act research has been very encouraging. A significant number of people living with HIV are potentially eligible living kidney donors, said Dorry Segev, MD, PhD, the lead surgeon on this landmark procedure, in a Johns Hopkins news conference. Researchers are closely following the outcomes of this and other transplants enabled by the HOPE Act. One day, organ transplantation from HIV-positive donors to HIV-positive recipients may become more widely available.

New Regimen Approval On 8 April 2019, ViiV Healthcare announced that the U.S. Food and Drug Administration (FDA) has approved Dovato, a complete, once-daily, single-tablet regimen of dolutegravir (DTG) 50 mg and lamivudine (3TC) 300 mg for the treatment of HIV-1 infection in newly diagnosed adults who have never been on an antiretroviral ARV and have shown no known resistance to either DTG or 3TC. It is hoped that exposing patients to fewer drugs at the beginning of treatment will lessen the effects of prolonged ARV therapy. The FDA’s approval was based upon evidence collected in two global GEMINI 1 and 2 studies that included more than 1,400 HIV-1 infected adults. These studies demonstrated that Dovato is just as effective as a three-drug regimen. None of the patients showed any sign of resistance to Dovato. Pedro Cahn, principal investigator for the GEMINI 1 and 2 study programs said, “People are now living longer with HIV and will spend a lifetime taking drugs to suppress their virus. The approval of the fixed dose combination of dolutegravir and lamivudine, a complete, single-tablet, two-drug regimen, marks a pivotal moment in the treatment of HIV-1… allowing [patients] to take fewer ARVs to get and remain suppressed.” Deborah Waterhouse, CEO, ViiV Healthcare, added, “ViiV Healthcare is delivering what patients are requesting—a chance to treat their HIV-1 infection with as few drugs as possible, marking a significant step in HIV treatment.” Dovato combines the integrase strand transfer inhibitor (INSTI) dolutegravir (Tivicay, 50 mg) with the nucleoside analogue reverse transcriptase inhibitor (NRTI) lamivudine (Epivir, 300 mg). Dolutegravir is an INSTI that inhibits HIV replication by preventing the viral DNA from integrating into the genetic material of human immune cells (T-cells), preventing this essential step in HIV replication. Lamivudine is an NRTI that interferes with the conversion of viral RNA into DNA, which in turn stops the virus from multiplying. As with any drug regimen, Dovato comes with restrictions and warning. For instance, patients with HIV-1 should be tested for the presence of HBV prior to or when initiating Dovato. Potential adverse reactions, observed in less than two percent, are headache, diarrhea, nausea, insomnia, and fatigue. Women should avoid use of Dovato at the time of conception through the first trimester due to the risk of neural tube defects; breastfeeding is not recommended due to the potential for HIV-1 transmission. HIV-positive patients should be tested for HBV prior to beginning Dovato. ViiV Healthcare is a company established in November 2009 by GlaxoSmithKline and Pfizer dedicated to delivering advances in treatment and care for people living with HIV and for people who are at risk of becoming HIV-positive. For more information on ViiV Healthcare, please visit www.viivhealthcare.com. —Reporting by Hank Trout

MAY 2019 • A&U

by Ruby Comer

Dale Guy Madison

Ruby Comer: What a captivating show, Dale! [He humbly thanks me.] First off, I’m dying to know, is your name a stage name…or birth name? Dale Guy Madison: I am a product of the “Golden Age” of television, Ruby. I was conceived on a balmy night in July of 1957, between episodes of The Roy Rogers Show and Wagon Train. Nine months later, Dale Guy Madison was born. Named for Dale Evans, Roy Rogers’ wife, and Guy Madison, one of the guest stars of Wagon Train, my purpose in life seemed pre-destined. I was to become a performer. Hallelujah! I was conceived during an I Love Lucy episode. I wonder why I wasn’t named Lucy, Ricky, Fred, or Ethel….or Mrs. Trumbull! [We have a belly laugh.] Here’s a quick Q: What film always makes you cry? I cry on so many films, it’s silly. But a film I cry every time is An Affair to Remember. Omigosh. Yes…Cary Grant and Deborah Kerr!

Me too, Mister. [Dale’s eyes moisten and he nods furiously.] That was fun. One more quick Q: what do you think happens after we die? [He takes a swig of bottled water.] We come back again. Okay. I vacillate between that and nothing. [I hunch my shoulders and shrug.] Anyhoo, name your all-time favorite film and favorite TV sitcom growing up. [The man doesn’t even flinch and answers instantly.] Valley of the Dolls and The Addams Family. Ah, yes. I love those gals in Valley of the Dolls: Anne, Jennifer and, of course, Neely. Wow. [I deeply inhale, returning to the moment.] Okay, switching gears. Tell me how you’ve been affected by the epidemic, Dale. I started losing friends early on when the epidemic hit. [He cocks his head, while his dark peepers glance off.] I remember in 1985, I was living in Baltimore, when I had to speak at a funeral of a coworker. The family didn’t want any mention of AIDS. I had to refer to it as “cancer.”

Ruby illustration by Davidd Batalon; photo by Jeremy Lucido

uck fear! I’ve heard that significant phrase quite a lot over the past year, and it unquestionably applies to Dale Guy Madison. The actor airs his dirty laundry on stage, unveiling many secrets. This brave soul shines in his one-man show, My Life in 3 Easy Payments. As with his other earlier one-man show, FREEda SLAVE: Mask of a Diva, Dale dons his drag persona, FREEda SLAVE, which he originally created for his role in To Wong Foo, Thanks for Everything! Julie Newmar. Dale originally landed in the public eye in the early nineties when he was one of the first African-American hosts of QVC. He was on the air for four years. The Baltimore native, like John Waters (yes, Dale played a bit part in Waters’ timeless film Hairspray), has been in the trenches of the AIDS epidemic for many years, using his art to bring about awareness, along with other LQBT issues: substance abuse, mental health, and homophobia. Playing a major role in the Baltimore African-American HIV community, Dale was project coordinator of the Men of Color AIDS Prevention Project (M.O.C.A.P.P.)—one of its original members—and also an original member of Men Of Color Against AIDS (M.O.C.A.A.). You go, Dale! After moving to Los Angeles, Dale continued his activism within the LGBTQ and AIDS communities. In 2012, he created a Black AIDS Quilt (several years earlier, he fashioned one while living in Baltimore), and participated in AIDS Walks. His HIV-awareness theater performances can be viewed on YouTube (links listed at the end). Dale currently works for the Los Angeles Department of Cultural Affairs. Mr. Madison has also written his memoir Dreamboy: My Life As a QVC Host & Other Greatest Hits, then followed up with a comical adult fairytale, Sissy Sammy in the Land of WeHo 90069—a fun read parodying The Wizard of Oz! Last year, his docucomedy short, “Life After QVC” preemed at the Independent Filmmakers Showcase, which was produced by his production company, DamnGoodMan Productions.

When Dale performs or pens, his bluntness and candor is only surpassed by his authenticity. Dale reveals his broken relationships (including a heterosexual marriage, an abusive gay relationship, and an affair with a Maryland State politician), the challenges of being an openly gay black actor, drug addictions, and his mental breakdown for which he was institutionalized for a year. A man for all seasons, Dale has been a nude model, fashion designer, a stripper, and…a singing trolley driver! At sixty-one, Mr. Madison has oodles to share, and he does it with self-effacing humor, exhibiting his life as a learning tool for others. After a Sunday matinee performance, I head backstage of the Davidson/ Valentini Theatre, located at the Los Angeles LGBTQ Center, to chat it up with the charismatic Baby Boomer.

A&U • MAY 2019

Oh Dale. I remember those gloomy days…. Many of my classmates from my high school drama department in Baltimore succumbed to the disease.

up all new clothes to my credit card. I assumed I would be dead soon and would not have to pay the bills. I tested negative and it took years to pay off those cards.

How awful. I’m sorry. You and I, Dale, are of, shall I say, “a certain age,” who remember those decadent days—pre-AIDS —of sex, drugs, and rock’n roll. Sum up in one sentence your experience. The bathhouse [he boldly enunciates, in a rhythmic lilt] was a social outing. Nothing was shameful about it.

Oh, geez, that’s amusingly distressing, and a story I’ve heard way too many times. Are you currently in a relationship? I am in a healthy and happy relationship. [He boasts proudly.] Rafael and I live together, and met little over a year ago.

…and once AIDS struck, how did you adjust your sex style? I became more fetish-oriented and focused more on fantasy instead of penetration.

photo by Jeremy Lucido

That’s a refreshing way to handle the tragic situation. Say, when did…. [Interrupting, Dale delicately places his hand on my knee.] Let me tell you , Ruby. When I speak to youth about HIV risk options, I jokingly say, “I prefer sucking a toe before sucking a dick (without a condom), there’s less risk and more nerve sensation.” Holy jumpin’ catfish, as my granny would say, when she liked something! [I pause.] When did you first test for HIV? In 1991. I tested right after my divorce from my wife before I started going back into the gay dating pool. I was afraid. I assumed I was already positive. I went out and charged MAY 2019 • A&U

[There’s a rap on his backstage room door. It’s a duo of young fans asking for an autograph. He cheerfully obliges. They depart.] What a cute couple. Back to Rafael, how did you two broach the subject of STI’s? I told him I was on PrEP, and what it meant. We continued to use condoms. Kudos, you two. What do you feel is the most urgent issue we need to address today? That just because PrEP can prevent the virus in the body does not eliminate other forms of STIs. Yes, yes, yes. I’ve been repeating this as often as I can, Dale. One pill is not going to do it all. Never. Before you were legal age, you were put into a mental institution. What a story! (Read his book, kids.) So how do you deal with depression these days? Fortunately, I’ve now found a wonderful therapist. I have learned to talk about my anxiety and depression. I know it all sounds

so trite to say, but meditation, yoga, and music have helped me tremendously. Whatever works, Dale! Looking back on your time on QVC, sum it up in one sentence. A glorified K-Mart salesperson on television. Ah, huh. Back to the present, what has this dreadful disease taught you? [Clearing his throat, Dale delivers in his trademark molasses-smooth voice] I…am… not…afraid…of AIDS anymore. But—I will never forget what it did to my generation. [All of a sudden, Dale’s handsome puss begins to glow.] At sixty-one, I’ve come a long way, baby! You sure have Toots! My golly what a life. Can’t wait to see what you’re going to do for the next episode. Last question, my dear, state one word to describe you. [Mr. Madison urgently retorts, with a rowdy attitude] DAMNGOODMAN! Get art aware with Dale by visiting: www.DanmGoodMan.com. HIV-awareness theatre pieces on YouTube: AIDS Challenge: https://youtu. be/A7YTGNgEeqo; Border Baby: https://youtu. be/j5kz7TBjeZ8; The Man, The Woman & The Lady(Dale plays an HIV role): https://youtu.be/ ULOJ4MQmJ-U. 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.

What if rural communities could be the first to end the HIV epidemic and be an example for the rest of the country? It starts HERE.

7th Annual Rural HIV Research and Training Conference September 20-21, 2019 Savannah, Georgia

The 7th Annual Rural HIV and Training Conference brings together health professionals to share innovative strategies, discuss systemic challenges, foster advocacy efforts, and build community partnerships to address HIV/AIDS prevention, interventions and care, and disparities amongst children, youth, and families in rural communities. Conference Organizers

Learn more at: ruralhivconference.com

Another Failed Relationship another lesson learned

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MAY 2019 • A&U

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there’s Andy. He’s not exactly a serious relationship, he’s married to a guy in another city and their relationship is open. What Andy and I have been enjoying for a few months now is a wonderful friendship with a sexual component. Andy is also negative, but his work involves various major HIV and AIDS organizations and he is much more enlightened and comfortable with someone who’s poz. We don’t talk about his husband a lot, but I suspect that he’s HIV-positive as well. There’s no worry about transmission because he knows that I’m undetectable. We can be close sexually without a condom coming between us. If he did want to use one, I would be fine with it. Most importantly, there is no judgment involved. Andy leans as far to the left as Paul does to the right. If the circumstances were different, we’d be a much better match. What he shows me is the kind of guy that I need for a partner—just as much as Paul shows me the kind I don’t. Every relationship is a lesson. We just have to be open to learning it. 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. His fiction has been published in the ImageOutWrite literary journal and he is a literary critic for Lambda Literary. Follow him on Twitter @ JohnFrancisleo2.

illustration by Timothy J. Haines

n my last column, I mentioned a trip I was taking to Baltimore to visit yet another guy I had met online. It didn’t work out for us, but we actually had a nice weekend regardless. I also fell in love with the city and it’s reasonable cost of living. Like a friend said to me when I was texting him about how little this guy was going to rent his beautiful one bedroom condo for, “It’s too bad you can’t date the condo.” Things didn’t work out for a lot of reasons, and I really am not disappointed. There were some serious issues, and one of the most serious were Paul’s backwards and downright judgmental views on HIV. I told him about my status early on, as I often do, and to say that he freaked out would be putting it mildly. I’m used to all kinds of reactions when I tell someone I’m interested in about my status, too much time researching and talking as we all are. He didn’t go anywhere, he to experts and advocates to go down that didn’t cut off communication so I guess road ad nauseam. The subject came up I thought that there was a chance too he and it came up often, and Paul is a perfect could come to terms with it—and as far example of someone who feels that they as taking precautions and having safe sex, are right in their assumptions and is not he might have. But he had absolutely no willing to learn. faith in U=U and the I could get extensive studies that tell beyond all that, ...it’s still bothering us we can have sex and I really could. me that I was willnot pass the virus on, What I couldn’t ing to accept his backwards even without a condom. get beyond was He was vehemently the judgment. The and prejudiced ideas on HIV anti-PrEP and wouldn’t idea that sometransmission. What does that how those of us listen when I told him say about me? it had a higher efficacy with HIV deserve rate than condom usage it because we alone. Paul felt that no one could absolute- should have known better. He felt superior ly guarantee that he wouldn’t get AIDS because he had avoided it. Things are over and that that was all he needed to know. with Paul, but it’s still bothering me that End of story. I was willing to accept his backwards and Now, I’ve said in this very column prejudiced ideas on HIV transmission. that I feel that it is completely up to the What does that say about me? Am I so negative partner what precautions to take desperate for a relationship that I would and it was time to put my money where swallow his garbage? Is it a reflection my mouth is. I would prefer that I not of the fact that somehow, after all use condoms when I’m talking about a these years, I still judge myself for my serious, long-term relationship, of course. status? There were a lot of reasons that But if my partner is negative and he’s not a relationship with this man wasn’t in comfortable with that, so be it. What I the cards. But his views on my status found that I’m not willing to do, is conweren’t the tipping point and that’s still stantly debate perfectly sound scientific bothering me. research. In my line of work, I spend On the opposite end of the spectrum

Straight on ‘Till Morning

ast month it was raining in California, and I had just been diagnosed with throat cancer, so I was melancholy and crying in showers. But this month, the sun is shining the way it is supposed to; and instead of lamenting the past like some clichéed character from an Arthur Miller play— mumbling emotional monologues as the spotlight fades to black (and half the audience falls asleep)—I was visited by a beaming and beautiful (almost-alive again) River Phoenix. His strawberry blond-hair falling in front of his champagne colored eyes in an asymmetric punk cut, his veins still bleeding from where he slammed his last hit, but smiling at me like in his death he was finally able to be his truest self. He was wearing cute pale blue Andrew Christian shorts that showed off his package, and a clean white t-shirt like the one he wore in Stand by Me, and he was sitting ankles-crossed at the foot of my bed as I slept. He was having a conversation with Norma Jean Mortenson, who had stopped dying her hair blond a few years ago, and was now wearing shoulder length warm brown curls as sweet as melted caramel. She was absently drinking a fruit smoothie with pomegranate and kale (always trying to flush the pills from her system), and speaking in that famous breathy voice that made even gay men swoon. And she and he are discussing all the things they didn’t get to do. All the things that I was still able to do. All the things that I secretly still wanted to do. River Bottom was talking about visiting the underground sex clubs in Germany, and kissing strangers in a gondola at sunset in Venice, and Marilyn Monroe purred saying; “That sounds just delicious River,” with so much magic in her breath that I got an erection while I slept. And then she told him about her dreams to write sci-fi scripts, and to produce and to finally be seen as something more than a just a pretty face. And River turned on my PlayStation and mostly let his character run into walls as I explanined to him “the Internet.” And after

his pixelated avatar died a particularly gruesome death, Monroe made her eyes go real wide like she had just thought of something and said, “Our dreams are not kept in our broken bodies, but in the ‘second star to the right and straight on till morning.’” God, she is beautiful. Chemo and radiation start next week and, even though HIV is still rattling around somewhere in my blood, so is Germany, Venice, and The Novel I never thought I would finish (that I finished!), and more dreams that I haven’t even dreamt yet…. I finished my novel! You know the one I’ve been talking about for the past six years. You know the one about fairies and “faggots” and the Devil and his twin brother God; and the salvation and destruction that can happen when one falls in love with the wrong one. The one about addiction; and poverty; and friendship; and race; and the magic that lives within our blood—the one where butterflies in California and people being burned alive are beautiful signs of the apocalypse…. You know the one that has been the one creative focus of my life for the last half decade—keeping me from performing or submitting work, the one that was workshopped with Lambda Literary four years ago and that was conceived while I was high in a bathhouse (and made me stop what I was doing and take out my notebook and write the words “Once upon a time Justin Michael Clover was a demon.”) The one that I hope will change the way queer people see themselves and how they see God. The one that I pray will be a lasting part of my legacy? I finished it! I finished the first draft thirty minutes before midnight on the eve of the New Year! And now I am editing and looking for a publisher. Did you hear me Universe, I’m searching for a publisher!?

(Hint, hint.) I finished a novel. I finished a fr@k!ng novel. Imagine what else I can do? Twenty years ago, when I first contracted HIV a doctor told me that I would have five to ten years to live. I was twenty-three and homeless and addicted to crystal meth and wandering the streets with only 120 T cells swimming around in my bloodstream, and I figured that I might as well use up this body like a bottle of expiring milk. I lived my life in the philosophy of Marilyn Monroe, River Phoenix, and James Dean (who they say would sleep with anyone who would give him a smile). I didn’t think the world had anything to offer me but sex and death; and more importantly, I didn’t think that I had anything to offer the world…. But I am forty-two years young, twenty years HIV-positive, and fighting cancer, and I just finished writing a novel! I wonder what other dreams haven’t we dreamt yet? Rest in peace, my dear Norma Jean. May I do your memory proud, Mr. Bottom (one bottom to another). And may all the prettiest angels smile big for you, Byron. 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 looking for a publisher for his first novel. His musings and wanderings on Love, Life, and Nonsense can be found at www.justwords.tumblr.com. A&U • MAY 2019

illustration by Timothy J. Haines

and fever dreams of fairy magic

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.

s the news came out about the London patient being cured of HIV, I thought of the whole question of HIV achieving remission. Just twelve years ago I remember hearing about Timothy Ray Brown, the Berlin patient (whom I know personally). The London patient and the Berlin patient were both cured by the same procedure. Both men had a bone marrow stem cell transplant to treat cancer. Both of the men got bone marrow from an HIV-resistant donor. Also there is a third man from Dusseldorf, Germany, that had a similar bone marrow stem cell transplant to treat cancer and got bone marrow from an HIV-resistant donor. The Dusseldorf patient has been off his HIV medications for three months now but there isn’t enough time to say that this patient has been cured. We should keep in mind what a “cure” means in the context of the everyday realities of people living with HIV/AIDS. 5 Simple Facts about the Cure for HIV 1. It’s super rare. Before both successful attempts to cure HIV there were many failed attempts in many patients. First the transplants from a HIV-resistant donor would be few and far between. Bone marrow transplants are also very risky; most

MAY 2019 • 2018 A&U • A&U DECEMBER

doctors only perform this operation when there is a clinical reason, which would be cancer in these cases. 2. There must be a genetic match between the bone marrow donors and recipients. According to the U.S. Library of Science the C-C chemokine receptor type 5 (CCR5) is predicted to be a seven transmembrane protein similar to G protein-coupled receptors. This protein is articulated by T cells and macrophages, and is known to be an significant co-receptor for macrophage-tropic virus, including HIV, to enter host cells. Defective alleles of this gene have been associated with the HIV infection resistance. Basically, both people involved in the operation have to have a matching CCR5 mutations. 3. CCR5 mutation is rare in itself. Professor Christopher Duncan told Science Daily that, “The fact that the CCR5-delta 32 mutation is restricted to Europe suggests that the plagues of the Middle Ages played a big part in raising the frequency of the mutation. These plagues were also confined to Europe, persisted for more than 300 years and had a 100% case mortality.” Basically all people in that part of the world have a greater chance to have the match for the CCR5 that is HIV-resistant.

4. Americans not finding a cure of HIV could have something to do with it being the melting pot of the world. If there is a cure for HIV that could be found elsewhere other than in Europe, the United States hasn’t found it yet. If it’s hard for the Americans to find this cure then we will need to generate more funding and more HIV research. The problem with that is the current Administration has halted certain HIV research, such as the study that would use fetal tissue to attempt to discover a cure for HIV. According to the Washington Post, the study was shut down because it uses fetal tissue implanted into mice. 5. Even though the HIV cure is rare and I might not see one that I can take in my lifetime, it gives me hope for the future. It gives hope for the younger generation who aren’t really educated on the cure or HIV itself. Right now HIV is something that some of us have to live with. I take one pill a day with food to suppress my HIV and that looks as if that is what I will have to do for the rest of my life, and I’m okay with that. However, other people are not okay with that. No matter what, we need more funding for more HIV research; there has to be a cure out there for everyone, not just people from a certain part of the world. I still have hope. ◊

FICTION Meet Clay Brown by Christina Renee Milliner

“M Christina Renee Milliner lives in Brooklyn,

New York, where she is currently writing her first novel. She holds an MFA in writing from Lindenwood University and a BA in English literature from the University of North Carolina-Charlotte. Her work has been published in The Gordian Review and Beautiful Losers Magazine. “Meet Clay Brown” is part of a novel-in-progress.

y name is Clay Brown, I’m 19, and I was born with HIV.” Four sets of questioning eyes glared at me. This was my second meeting at Baptist Hope Church. In the first meeting, I listened as the other group members introduced themselves. It was a sort of rule for every new person, “listen and don’t speak,” as the Reverend had said. He never wanted to make anyone feel pressured at their first meeting. It didn’t matter; we all had the same story anyway. Our story. We were all under the age of 25, living with HIV. “It’s good to see everyone again.” The Reverend pulled up a brown folding chair joining us in the circle. “And young lady, I’m glad you decided to return.” I don’t know why I came back. There wasn’t anything special about this place. It was an old brick building, with shabby carpet, dim lights, and a cold draft. The only nice thing about the sanctuary was the huge gold chandelier hanging from the middle of the ceiling. The Reverend crossed his long legs, his blue jeans rising above his ankles, displaying his clean, white socks. He folded his arms across his chest and looked around with his black-framed glasses. “Why don’t you tell us a little about yourself?” I pulled my beanie tighter over my dreads. Damn. Wasn’t my introduction enough. Let’s see…ya already know my name. According to Jimmy, I didn’t need school because I was gonna die soon, just like my mother, so I dropped out. Turns out he was wrong, cause right now I could have a diploma, but instead I’m here sitting with these people, wondering how in the hell this is going to help me at all. “Clay,” the Reverend said. I felt the moisture under my armpits trickle slowly down my torso. “Like I said earlier I was born with it.” “Man, born with it,” Isiah said, as he rubbed his bald head.

“My mother had it. She gave it to me and Jimmy. She died when I was ten.” “Who is Jimmy?” The Reverend asked. “My father,” Those words felt as if they had come from someone else. “What brought you here?” The Reverend’s voice was full of empathy. “I found the card on the train.” It was stuck in one of the metal frames that lined the train walls with advertisements. Its words HIV Ministry, printed in bold gold letters, popped out. “My cards are getting around,” the Reverend said. “Well, that’s good to know.” Laughter filled the room. The Reverend had kind brown eyes. He seemed to genuinely care about people. At my last meeting, he told me he moved to Brooklyn from North Carolina in hopes of starting a healing ministry. “Another mamí in the house,” Martina said, getting up from her seat and taking a few short steps toward me, her curvy body swaying to its own rhythm. She hugged me while placing a light kiss on my cheek. “Sit your ass down,” Brianna said. Her bright purple sweater made her short red bob stand out. Both colors contrasting against her pale skin. Martina returned to her seat and gave Brianna the finger. “Ok,” the Reverend said. “Let’s not scare Clay off.” “She’s all right, Rev,” Asher said, staring at me from across the circle. His dark hair roamed freely on his head. He leaned back in his chair, playing with the zipper on his worn out leather jacket. I folded my hands, then quickly unfolded them. “Updates,” the Reverend said. “I need updates.” From my last meeting, I learned updates were how he asked about everyone’s week. Martina stood, although it wasn’t required—it seemed like she tried to show off her curves whenever possible. “I’m struggling a little with my GED classes. A&U • MAY 2019

My teacher suggested I get some tutoring.” person who loved me away. “I can help you,” Brianna said, stretching her legs in her During the rest of the hour-long meeting, the Reverend seat and pulling on her sweater. She was a part-time bartendtold us about his week involving a hobo and some blessing er who had dropped out of law school after her first year. oil, then we talked about politics, entertainment, and crazy “Gracias, mamí,” Martina said before sitting down. random things we came across in the city. There was no pres“Who’s next?” The Reverend asked. sure to talk about the virus. The floor was open to anything. “I’m writing a new song,” Isiah said. “About Paulina.” I “Remember, guys, don’t pity yourself,” the Reverend said wondered why he shaved his head. as we folded our chairs and placed them in the center of our “Who’s Paulina?” I blurted regretfully. “Never mind.” now broken circle. “It will get better.” “It’s all good, Clay,” he said. “She’s a girl I slept with. A “Sorry about earlier,” Asher said, walking by my side as I girl who gave me HIV.” headed out. “It’s a good first step you’re taking toward healing through “What was that about?” I asked. He barely knew me. So your music,” the Reverend said, breaking my uneasiness. what was his problem? “You all have to take that first step toward healing.” “I thought I saw you somewhere before here,” he said. Healing. As if one day the virus could magically disappear. “Just forget it.” Last time I checked, my body wasn’t curable. We made our way out the double doors. The sun was be“Some guy grabbed some of my incense off my table and ginning to set, although it was only 5 pm. I stuffed my hands ran,” Asher said, still playing with the zipper. “I chased him into my pockets. for about two blocks.” “Later,” I said, walking away from him to cross the street. “That bastard,” Brianna said. “Did you catch him?” Two cars passed by, not giving me a chance to cross sooner. Asher leaned forward. “Na, he was “Wait,” Asher said. “I did see you too quick. I lost fifty dollars.” before.” “Damn, man,” Isiah said. “So?” I crossed the one-way street. “Don’t stress it,” the Reverend “You was with some white girl. "Our walk was silent. The said. “You’ll earn that money back in With the short blond hair. How do you small blocks that led know her?” no time.” Asher leaned back again. “I better. He meant Mimi. Why the hell did us to the subway seemed It’s getting harder to sell.” he care? longer than usual." “How was your week, Brianna?” Asher followed behind me, ignorthe Reverend asked. ing the fact that I was ignoring him. “The usual,” Brianna said. The “What’s it to you?” I asked, stopblack eye shadow around her green ping and turning around. eyes made them glisten in the dim light. “My mother calling He walked closer to me. “A girl like you shouldn’t be hangharassing me about all the stupid choices I made in my twening with a girl like her.” ty-three years on this earth. Who knew I messed up even at “Mind your business.” I felt he wanted to know somebirth? Like her shit don’t stink.” thing. If I was like Mimi. I didn’t want to think about her. At “She will come around,” the Reverend said. least not right now. “When hell freezes over,” Brianna shot back. “Hey,” he said, putting his hands up in defense. “Come I didn’t want to share my week. But the Reverend’s sudden on, I’ll walk you to the train.” look in my direction told me otherwise. Our walk was silent. The small blocks that led us to the “I worked.” I said. That’s really it. That’s all there ever subway seemed longer than usual. Sirens blared in the near is. Work to keep the bills steady. Work to keep the crappy distance before slowly fading. A girl on her bike rode toward apartment that Mr. Lee rents to us. Work to at least have some us, rolling her eyes, before turning onto the street. When we food in the refrigerator so when Jimmy tries to sell the food reached the subway, I was ready to say goodbye. stamps for his next hit, we won’t starve to death. “For the record, I’m not like Mimi,” I blurted. “She’s just “Where do you work?” the Reverend asked. someone I know.” “At a Mexican café in Williamsburg.” “Whatever,” he said with a smirk. “What are you doing “Mexican.” The Reverend said. “Interesting.” tonight?” “The owners are Mexican,” I said, wanting the topic to “Working.” already end. “Too bad,” he said, his eyes searching mine. “Doesn’t necessarily make it a Mexican café,” Brianna “Why?” I asked. said. “Nothing, forget it,” he said, looking away from me. “I’ll “What’s the food like?” Isiah asked. see you at the next meeting … right?” Couldn’t they just shut up about it. “Yeah,” I answered. Not completely sure if I was going to “That’s all you do?” Asher asked, his sudden forwardness come back. catching me off-guard. He reached into his pocket and handed me something “Umm, yeah,” I answered hesitantly. “I’m a waitress.” If wrapped in foil. “Later, Clay.” that’s what I wanted to call myself. The truth was we barely I watched him run back the way we came, then unwrapped got any customers to even consider myself one. “No big deal.” the foil, finding four incense sticks, before I ran down the “What we speak has power over us,” the Reverend said. filthy steps to the train. “We all need to have a little faith in ourselves.” I dropped faith when my mother died. It took the only MAY 2019 • A&U

cott Kramer, LCSW, is another New Yorker I’m proud to call a dear friend. Five years ago we bonded over stories about HIV, as both he and my father were diagnosed in 1988, at a time when there wasn’t much hope, nor treatment options. Scott and I both share a Boston college experience, he at BU and me at Emerson. He moved to NYC ten years before me, in 1990, and just like me he struggled to find work eventually landing a gig in graphic design, but it was his passion to find his true calling—through an online assessment test—which brought him to a new career as a psychotherapist in private practice in the West Village. Scott has taken his experiences living with HIV and has used that to help empower others as they go through their own personal journey. Candy Samples: When I first met you, you were already practicing, and you had invited me to one of your groups to view the documentary about ACT UP, How to Survive a Plague. How did those groups come about? Scott Kramer: I thought, there’s got to be more ways to engage people, more ways to build community for people. Because what I’ve learned throughout my years in practice is that people are really terrified of meeting people. Seriously afraid of rejection. People living with HIV deal with a lot of rejection all the time. Historically speaking, people, in the early days, would like to serosort—meaning, date someone who is of their same HIV status. And while that was happening, there were other people that were trying to date anyone at all. There was a lot of stigma. There was a lot of rejection of people who were living with

HIV. And so I decided there was a need to build community and reduce that fear and stigma. And out of that came Hi-fIVe Flicks which you came to, the movie group. You talk about stigma. Do you find that is a focus in your practice—to reduce stigma, reducing that fear? Absolutely! There’s huge fear from people living with HIV to disclose their status especially on apps to potential romantic partners, simply for fear of rejection. Many people who are newly diagnosed remember when they were negative and remember, perhaps, not being very accepting of people who were positive when they were on the other side of it. And so now they understand what it’s like in terms of being rejected and rejecting others. That stigma is very real but it also prevents people from even trying to meet other people, whether they are positive or not. We don’t know who is positive. Not everyone is so out about their status. There are a lot of times when people may not even reach out to someone because they think automatically that they will be rejected. They feel badly about themselves. They feel like the words that they don’t like to hear—dirty, unworthy, unlovable. The things that we think of when we’re newly diagnosed: “How am I ever going to love someone again? How is anyone ever going to love me?” And so through reduction of stigma and fear, maybe those people can take one step closer to reaching out to someone—the person on the other side of the bar, the person whose picture they like on an app or a friend of a friend. A&U • MAY 2019

Candy photo by John Petrozino; Kramer photos by Rob Zukowski

SCOTT KRAMER

It’s 2019 and the stigma is still there! I can tell you that when I was on an AIDS charity ride, on the crew, and there was a group called Pos Peds. Pos Peds carry an orange flag that they can attach on their bicycle. I decided as a Pos Ped crew that I would wrap the flag on my belt—and it was visible and I was really proud of that because I wanted to bust stigma to show that other people could bust stigma, too, and they could maybe feel more comfortable. There was someone I was on the crew with and he came up to me and said, “I’m positive also. I’ve been positive for a number of years, but I’m still not out about it. I still don’t want people to know.” I said, “That’s fine. You do what you have to do. Would you like one of these flags? You can hold on to it, you don’t have to show it.” At closing ceremonies, he pulled me over and showed me there was just the smallest triangle of orange showing from the flag on his belt. No one could see it, but he knew what he was doing. And that is a stigma buster for himself. He put one foot outside of his comfort zone and that was huge for him. Do you think the advent of PrEP, PEP, U=U, knowing that we have the science on our side, has the power to reduce stigma? Absolutely! Because now it can become a non-issue if someone can achieve an undetectable viral load. That’s not possible for everyone, but for those who can, now there is no chance of transmission, ZERO chance of transmission of HIV from someone who has an undetectable viral load to someone who is not living with HIV. Game changer. So what that means is, with the advent of U=U and PrEP, with those two things, that’s like a double layer of protection—which is even more effective than condoms. What it does really, is PrEP gives us options. And U=U gives us more options. It’s wonderful because people have choices and they can make their own choices about their own sexual health which hasn’t always been the case. Before it was condoms or no condoms. I remember getting the C. Everett Koop (US Surgeon General 1982– 1989) mailing about HIV/AIDS in the eighties. You were doing your homework! I missed that whole part. In the mid-nineties, that’s when I was diagnosed with AIDS, in 1995. It was just before the cocktail. I wasn’t getting any medical treatment at the time. That is not a good idea—it’s very important to get tested and know your status. But this was my journey back then, when we only had toxic medications. For about 10 months I took AZT and other lesser known medications that left me with a pretty severe case of peripheral neuropathy, which affects my legs and my walking. It got so bad at one point that I actually had to have a walker and never thought I’d be able to walk again. But then, slowly but surely, six months later it started getting better and better but I still have it somewhat. But I can walk. I’m mobile. I can walk in the AIDS Walk and it’s no problem. Funny you mention the AIDS Walk. I always describe you as CandyWrappers adjacent. You walk with us but you have your own fabulous team, Invincible–The Pat Benatar Team. I’ve been doing it since the year 2000. It’s more of a virtual team now, I don’t recruit that many walkers. I just do it to raise awareness and raise money for AIDS Walk and all of the beneficiaries and yes, I do walk with the CandyWrappers every year now, because CandyWrappers are awesome. I’ve always said that AIDS Walk is a great entry-level into activism. MAY 2019 • A&U

You’re surrounded by so many supportive people that are all there for one cause, one mission. Absolutely. And I always thought that it’s the amount of people that are there that means so much. It means so much because that’s what you see on TV. But also, it means so much for people living with HIV, to see so many people caring. We don’t see that on the apps. We can be scared to see it in person. We can be scared to disclose to anybody—our bosses, our family, our best friend. But with AIDS Walk we can see twenty thousand people literally surrounding us. We can hug any one of them because they are there really to support people living with HIV. It’s a beautiful thing and that, that is a way to build a community. It’s a common goal to raise awareness and eliminate stigma. Whether it was the eighties, nineties or early 2000s—it’s still there. With your practice, you are literally taking your practice to the bar here in Astoria. Tell me about that. The Hi-fIVe group has now evolved into community outreach— Hi-fIVe Talks. What that looks like is I will go to a bar, write on Facebook about where I’ll be and I will sit there and talk to anyone about HIV. I’ll start a conversation so people know I’m there to talk about HIV, and anyone can come up and talk about anything around HIV. Whether they know someone and lost someone to HIV, whether they’re thinking about dating someone living with HIV. Whether they’re thinking about getting tested or going on PrEP. Or they just found out they’re positive or they’ve been living with HIV for a really long time and just want a hug. Any of those things. Whatever it is, you can always talk to me about HIV. You say outreach, I say ministry. Okay. Amen! For more information about Scott Kramer, LCSW, log on to: www.affirmingpsych. com (e-mail: scott@affirmingpsych.com). Candy Samples is a singer/songwriter drag artist in New York City. She has released two EPs and several singles on iTunes and is currently working on her first full-length album. In her spare time, she fundraises and raises awareness for many different HIV/AIDS organizations. She is a fierce ally to the HIV/AIDS community and encourages all to use their “Powers for Good.” For more information, log on to: www.samplemycandy.com.

Transcending G Gender

NGO and Multinational Photographer Sasja van Vechgel Elevates her subjects—Young Transgender Women in Indonesia by Sean Black

isually drawn in by the dynamic and bold compositions of her rich black and white images, crowds visited Sasja van Vechgel’s photos along the partition wall separating The Global Village and the Exhibition Hall at the 22nd International AIDS Conference (AIDS 2018) this past July. “Transcending Gender; An Intimate Encounter” showcased a selection of over twenty-nine intimate photographic works of art along with one video created between 2016 and 2018 about the lives of eight young transgender women; Aurel (twenty-three), Caca (twenty-four), Chelsi B (twenty), Rara (twenty-one), Corina (thirty-five), Sasha (twenty-six), Adil (sixteen), and Lena (thirty-three), all led by Mami, a transgender woman herself, who works for the NGO Yayasan Srikandi Sejati, as a field manager overseeing the group of waria, a derivative of the phrase wanita-pria, meaning “women-men.” “Most have left their homes at a very young age due very often to abuse,” informs Sasja. The waria live together in a kos, which gives the vulnerable group safety as well as freedom to be themselves. Because of the deeply imbedded stigma surrounding HIV/AIDS and other STIs, topics such as prevention, infection, substance abuse, addiction and violence aren’t generally openly talked about. Since a wave of negative media outings in 2016 in Indonesia more cases of abuse have been recorded. In some cases, the violence is random and indiscriminate. Some groups of men consider it fun to beat up transgenders or conduct drive-by shootings (Aurel). Indonesia does not legally recognize nor support the gender identity and rights of transgender people, as the community suffers the lack of official identification, and thus the ability to access healthcare and education resulting in a scarcity of employment opportunities. Social exclusion, and economic vulnerability means that sex work is the most viable form of income for young transgenders. Not so foreign even in the wealthiest and seemingly advanced countries like the United States. “Among transgender women there is a high risk of HIV transmission,” warns Sasja. “Several factors contribute to this; stigma and discrimination, leading to low self-esteem and disempowerment which can make it harder to insist on condom use.” Rumors from waria who advocate for the use of condoms report the socioeconomic reality that sex workers are tempted with the opportunity of earning up to three times more from clients requesting that condoms not be used. The accessibility and awareness of PrEP as protection against infection is ad-

A&U • MAY 2019

A&U Gallery vancing but not swiftly enough. According to PrEPMAP.org, a guide to PrEP in Asia and the Pacific, PrEP is not yet available locally in Indonesia; however, some clinics in Indonesia import PrEP from abroad at the request of their clients. In 2016 in Indonesia, the overall HIV prevalence among waria was 24.4 percent, and was highest in Jakarta (34.0 percent) (http://aidsinfo.unaids.org]. Waria involved in van Vechgel’s project (three of whom live with AIDS) feel the reported data is inaccurate and that the “real figures” are much higher. Additionally, transmission of HIV can stem from sharing contaminated needles used for hormone and silicone injections, some of the most common methods of gender enhancement. Although the practice of liquid silicone injection in certain parts of the face or body has decreased since the 1990s, it still occurs among Sasja’s subjects allowing themselves to be documented. The naming and title for her series bears witness to the

strength of her visual family overcoming the grim realities in Jakarta, which drives her sitters to be mentally stronger, diligent in avoiding pitfalls, and innovative while sometimes having to suffer and endure unfathomable aspects of life that are many times beyond limits. Her project “Transcending Gender” grapples delicately with the boundaries of human perseverance. “It is about remarkably strong people, regardless of their gender,” lovingly attests van Vechgel. Born in 1975 and an adolescent during the peak of the epidemic, van Vechgel’s Dutch homeland has faced the challenges of HIV/AIDS since it first appeared as a public health threat in the 1980s. By embracing scientific evidence and working with populations that other countries marginalized and stigmatized, Amsterdam is recognized as a “Fast Track City” that has committed to accelerating action to ensure that the world can reach the ambitious target of ending AIDS by 2030. A&U had the good fortune to learn more about Sasja’s alluring work as the in-person conversation at the conference continued later over email. Sean Black: Can you define “being human”? Sasja van Vechgel: Being human to me means we all have the [same] right to be [exist], whatever gender, sexual preference, color, religion, education, background or minority we originate from. All human beings deserve the right to ‘own’ one’s own life and identity; not to be forced to deny or repress their feelings and identity. Besides geography, what “brought” you to your work focusing on human rights and healthcare? I studied Human Geography, which created the fundamentals for a greater understanding of people and where and how they live. From early childhood I was already “fed” photography in my home. I remember the thrill and excitement of shooting my first roll of film on a swan sitting on her eggs, trying to get as close as possible. The film totally failed; all of the photos were out of focus, which was so disappointing. But it also gave me motivation to become better in photography; how do you shoot something as you imagine it should be? Additionally, having lived in various countries around the equator and with a passion for healthcare and listening to people’s stories, photography became a tool to dive into situations where rights and care were left behind. I have always believed that if we stay close to our passion, we can give most energy with the best results. How about HIV/AIDS specifically? Inevitably in Africa where I lived for ten years, one is confronted with HIV/AIDS. At some point, I documented the work done by an organization working on HIVprevention in the highlands of Tanzania. Thirty percent of fifteen villages visited had [been hard hit by] AIDS, and most of the middle-aged population had already passed away; mostly grandparents and children remained. When I was there, many grandparents started to contract the virus as well. The reason being that many AIDS patients also had Kaposi sarcoma, with open wounds on their feet. Nobody had any footwear/sandals, and so in the small mud huts the virus Chacha on the phone making some last minute arrangements for the night. ©Sasja van Vechgel

MAY 2019 • A&U

tion, it’s worth everything. Sometimes for NGO assignments, when there is relatively little time for an interview, however nonetheless, when I feel this connection, when there is momentarily no stigma, no threat and people feel free enough to share their stories; that feels very special. It also makes me feel very responsible, which is why I do advocate and talk at length, elaborately, about these encounters to make the people in positions of power and authority [change-makers] feel a part of these stories.

was spread from wound to wound through the soles of people’s feet. To me this could have been so easily prevented if everybody would have been able to wear sandals…I will never forget! This [for me] triggers my “human rights button.” As it relates to the transgender community, since Indonesia does not legally recognize nor support the gender identity and rights of transgenders, they often lack official identification, access to healthcare and education, and thus have less employment opportunities. Social exclusion and economic vulnerability mean that sex work is the most viable form of income for young transgenders. It’s sad that because of stigma and lack of opportunities they have no other choice than to earn their living through sex work. If the level of tolerance and acceptance could be elevated, and the waria could have other jobs than sex work, this would also protect them against the virus. As one of the waria said: ‘We are very loyal condom users, but once in a while, if a client offers three times more money to have sex without a condom, we are compelled to take that opportunity, and we all recall such times, sometimes once a weekly.’

Adel is a young male-to-female transgender from Sulawesi living and working in Jakarta. ©Sasja van Vechgel share that rewards the work you do? Difficult question! I think that, in general, by giving people trust and thus creating mutual respect this motivates people to talk, share their experiences, and gives them the confidence that they can speak up and that something might be done about their situa-

I enjoy your aim to “integrate both magical and subjective elements”? Could you elaborate on this sentiment and aim? I mean that in documentary photography the photos are always quite illustrative, factual, and thus do not leave much room for imagination. In my self-assigned projects, I have the freedom to explore a little beyond that and tend to tell a story with a more artsy flair. It still addresses the same issues, but because of the suggestive ambience of the photos that may be perceived in a more freely way. It gives the viewer a little more “feel” to the subject. The second meaning of the magical is the ways of local treatment that interest me enormously. Many people I have interviewed visit a local healer to address their problems,

Are there testimonials that you could Aurel; just up and making herself ready to go out on the streets ©Sasja van Vechgel

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A&U Gallery for example, one waria had tiny golden pins inserted in her body to protect her from evil. One of the strongest elements of your work to me is the intimacy and your seeming invisibility while creating the photograph. How do you gain this level of trust in marginalized communities in which you are an outsider? You mention exactly the words that are important: intimacy and outsider. In these kinds of projects, I do indeed spend a lot of time gaining trust first. In Indonesia I speak the language good enough for example to act on my own, to blend in and gain trust. In this case it might have been to my advantage that I am a woman myself and thus could level with them about many issues. Perhaps another thing which is important is that I love listening to their stories and their motivations which I think gives them a feeling of true respect. In the end I guess I become enough of an insider to become invisible. How do you feel about the term “outsider” as a cis woman wanting to elicit human compassion or at least awareness of the trans community? I approach and treat everybody as being the same. This means I don’t see myself as an outsider/cis woman, nor exclude others. I would have approached and enlisted any other minority group in the same way. If I would have documented this group as if they were spectacles, then yes, that would have been very discriminatory, but I didn’t. On the contrary, I approach them inclusively, just showing them from a humanitarian perspective, as normal people in an abnormal situation. The title of the photo series also refers to this: “Transcending Gender; An Intimate Encounter” is a verb, as if there is a fluidity in gender, which is transcending. The second part about “An Intimate Encounter” which refers to the intimacy of the photos: Yes, they are intimate, because it was like that and I choose to portray those moments. Of course, photography has a certain focus—it is my reflection and filter, my admiration of reality and my judgments. The question is: How will it be perceived? And then there is the layer of art applied on top which again can be perceived in different ways. But that is also the whole point of Art. Do you think trans and cis women share a similar universally feminine bond? Yes, I think there is the same universal feminine touch to trans and cis women; most have an internal desire to care, like real care of themselves and others, and to have children, and to make a nest—a place to call home. In general on the spectrum in between MAY 2019 • A&U

men and women, [I believe] there are men with a more feminine touch and women with a more masculine touch. In this fluidity of genders, the feminine bond that exists, I think, is the same. I’m not an expert of course! I saw a number of our transgender community at IAS 2018. How did they receive your exhibition in Amsterdam? In general, the photo series was received positively. Many people asked how I reached this level of intimacy, most were quite unaware of the situation in Jakarta (many comparing it to the relative freedom transgenders have in Thailand), and some even cried as they recognized their own story. So, I guess overall it was quite positive! Who have been your greatest artistic and humanitarian influences? I am thinking of the late Mary Ellen Mark in particular and her work in India. Yes of course Mary Ellen Mark! Her series about caged women and the Circus are my favorite images of hers. But also, for a long time, I have been inspired by Gideon Mendel who did a lot of HIV/AIDS related documentaries during the early eighties and later climate related portraits. I’m a big fan of Rineke Dijkstra’s portraits and Stephan Vanfleteren’s black and whites. Many more like Peter Beard, Pieter Hugo, Anton Corbijn; different styles but all very inspiring. What projects will you be working on in 2019 and beyond? Apart from assignments for NGOs (coming up again the Leprosy Foundation and Disabled Children of Liliane Fund) I have been assigned to portray refugees in Denmark for the UNHCR. This is a controversial and increasingly important topic here in Denmark. Is there anything else that you’d like to share

Lena ©Sasja van Vechgel with our readers? Thank you for the attention for minority groups such as these young transgender people depicted in this photo essay in A&U. Photographer’s note: A special acknowledgement should be given to the Indonesian NGO Yayasan Srikandi Sejati (funded by Linkages Indonesia and UNAIDS). This organization monitors about 3000 transgenders in their program focusing solely on HIV/AIDS prevention and granted the photographer permission to follow their activities and transgenders resulting in this exhibition. Sasja van Vechgel’s work has been exhibited internationally, most recently at the Global Art Gallery in Vanlose, Copenhagen, Denmark from November 2018 through April 2019. She received Honorable Mention in the prestigious 12th Annual Julia Margaret Cameron Awards for her professional contributions to Human Rights for her series. Funding support for this work was provided by Amsterdam Fonds voor de Kunst and by the Municipality of Amsterdam, host city of AIDS 2018. For more information log on to www.sasjavanvechgel.com. Link to the series: http://sasjavanvechgel. com/index.php/transcending-gender/. Instagram @sasjavanvechgel. Sean Black photographed Evvie McKinney for the April issue.

Love, Loss &

rage Lyrical and erotic, Raymond Luczak’s Flannelwood explores the art of losing by Hank Trout photographed exclusively for A&U by Brent Dundore

aymond Luczak can reasonably lay claim to being one of the LGBTQ community’s most celebrated renaissance men of letters. A novelist, playwright, editor, documentary filmmaker, biographer, essayist, and poet of great acclaim, Raymond has written several collections of poetry, including St. Michael’s Fall (1995), Mute (2010), and How to Kill Poetry (2013); has edited other poetry collections, including Among the Leaves: Queer Male Poets on the Midwestern Experience and the brand-new Lovejets: Queer Male Poets on 200 Years of Walt Whitman; has seen seventeen of his plays produced in three countries and has completed two full-length documentaries (Guy Wonder: Stories & Artwork and Nathie: No Hand-Me-Downs); and has penned books of essays, including Silence is a Four-Letter Word (2002) and Assembly Required: Notes from a Deaf Gay Life (2009), and novels, including the award-winning Men With Their Hands (2006) and his newest Flannelwood, to be published in June 2019. He is also a Deaf gay man. Raymond was born and reared in Ironwood, a small mining town in Michigan’s Upper Peninsula. The seventh of nine children, he lost most of his hearing at the age of seven months in a bout of double pneumonia. After high school, he went to Gallaudet University, in Washington, DC, where he earned a B.A. in English. He learned American Sign Language (ASL), became involved with the Deaf community at Gallaudet, discovered gay literature, and won several scholarships for his writing. Regarding his time at Gallaudet, the world’s only university for deaf and hard of hearing students, Raymond writes in Assembly Required, “My first five months in Washington, D.C., transformed me completely…. I found myself among a group of Deaf gay friends and came out to everyone on campus. I didn’t care who knew. Learning ASL

had freed me from the fear of being lonely ever again.” In 1988, Raymond moved to New York City and got involved with the Deaf theatre community there. His 1990 comedy Snooty won first place in the New York Deaf Theater’s Samuel Edwards Deaf Playwrights Competition, and his essay “Notes of a Deaf Gay Writer” was published as a cover story for Christopher Street. Soon, Alyson Books asked him to edit Eyes of Desire: A Deaf Gay & Lesbian Reader, which garnered two Lambda Literary Award nominations. In 2005 he relocated to Minneapolis, Minnesota, where his poetry soon won him an Artist Recognition Grant from the Jerome Foundation and VSA arts of Minnesota. He continues to live in Minneapolis and continues to produce groundbreaking writing. It’s rare that a writer is as accomplished as Raymond in both poetry and prose. I asked him which he preferred. “I alternate between fiction and poetry. It all depends on which genre is the best fit for what I want to say. Over the past year I’ve written pretty much only poetry, but I find myself drifting back to fiction these days. I think I’m itching to start telling narrative stories again.” My first introduction to Raymond’s work was Mute, his 2010 book of poetry. I was particularly struck by a sonnet called “Vow”: “Take it from me—from those men in my life, / I’ve had to master the art of losing…. / I should pine / for the meaning of stillborn romances, / but I won’t. With me they’ve lost their chances.” As I reread “Vow” recently, I realized that “the art of losing” would make an excellent subtitle for Raymond’s newest novel, Flannelwood. In this lyrical, erotic, heart-wrenching novel, Bill, a forty-something barista and a self-proclaimed “failed poet,” meets James, a disabled factory worker (his leg was ampuA&U • MAY 2019

APRIL 2019 â&#x20AC;¢ A&U

photo by Russell Yip / San Francisco Chronicle

tated at mid-shin) who wears a prosthetic foot, at an “OctoBear” Dance. For six months Bill and James share weekends of unbridled passion at James’s house out in the country, making for a winter of incredible heat. But on the first day of spring, James abruptly, inexplicably informs Bill over the telephone that “It’s not going to work out” and hangs up on him—no explanation, no reason, nothing that Bill can understand. Bill searches his recollection of James and others who departed too early from his life in search of clues to James’s sudden change of heart. He discovers through a mutual friend why James left but that does little to ease the pain of their “stillborn romance.” Like any curious reader, I wondered how much of Flannelwood might be autobiographical. And so I asked. “I don’t think this book is all that autobiographical. Yes, I did date someone for six months, and yes, he did break up with me but refused to give me an explanation. Not having that sense of closure was emotionally difficult for me, so I was filled with a lot of major doubts about whether I was

worthy of being loved again….I was filled with rage at his unwillingness to provide closure. That lack of closure prompted me to write Flannelwood. I’ve changed a lot of details, but I think it’s very much emotionally true about what happened. I also don’t think I’m anything like Bill. I’m not short, I don’t like coffee, I don’t have an MFA in Creative Writing, and I don’t think of myself as a failed poet!” Much of the novel consists of Bill’s reconstructing his passion-filled weekends with James. These passages are reverie-like—Bill’s adulation of James is almost religiously toned—they form the most lyrical, rapturous passages in the book, and in some cases, the most erotic. In fact, as I read the book and marveled at just how lyrical and sensual Bill’s prose is, I had trouble reconciling the beauty of his language with his self-assessment as “a failed poet.” And so, again, I asked. “I think Bill was suffering from the impostor syndrome, as in feeling very much a fraud as a poet. He may well have been a good poet but he hadn’t yet found his true voice that would have elevated him above

a sea full of poet wannabes. The reason he hadn’t found his voice sooner is that he had no compelling reason to find it in the first place. Also, his own standards were probably so high that I don’t think any poem he wrote would’ve passed muster in his own eyes.” The image of ashes, in one form or another, recurs throughout the book: the ashes of Bill’s ex Craig who died of AIDS, hidden in a jar in the back of a closet; the ash from James’s cigars; images of snow falling like ashes; and Bill’s many references to “ashes to ashes.” The images lend a solemnity to the scenes in which they appear. “The book is all about loss,” Raymond told me. “Ashes remain a powerful symbol of fire and heat once alive. We rarely appreciate what we have that is amazing until it’s gone. This explains to a large degree why so many poets and writers focus on loss and grief. And while I did say that this story is about loss, [it] is also about discovery and redemption. You cannot appreciate what you’ve discovered if you haven’t experienced loss and grief first. You lose, and you gain, hopefully with A&U • MAY 2019

some wisdom about what you’d lost.” Structurally and thematically Flannelwood echoes the influential 1936 novel Nightwood by Djuna Barnes, one the very earliest novels to present a story of an explicitly homosexual relationship. Nightwood is a complicated, complex, difficult-to-read novel, written in the Gothic style using modernist literary techniques. But not to worry if you haven’t read Barnes’s novel. “If you’ve happened to have read Nightwood,” Raymond told me, “great! If you haven’t done so, my book may make you want to discover Nightwood. It’s my hope that will be the case. It’s extraordinary, but you have to be ready for it.” When Raymond writes about his love for Barnes, his language becomes as lyrical as Bill’s when he writes about James. “You’ll be astonished by her achievement. Let her prose, enriched with the core nutrients of written language itself, wash over you like a wave on the shore. Imagine meeting fascinating characters from a long-ago time in Paris when the city was indeed affordable for bohemians like Djuna and her great love Thelma. Allow all their voices to permeate your body. Breathe in her words, and you’ll breathe out memories so lucid that you’ll swear they are yours. Such is the majestic power of Nightwood.” In addition to writing the forthcoming Flannelwood, Raymond recently edited Lovejets: Queer Male Poets on 200 Years of Walt Whitman,” commemorating the bicentennial of Whitman’s birth and the fiftieth anniversary of the Stonewall riots. In Lovejets, more than eighty poets pay homage not only to Walt Whitman, but also to other queer poets and queer poetry. Poets in the collection include John WhitMAY 2019 • A&U

tier Treat, Jack Fritscher, Chip Livingston, Edmund White, Luczak himself, and A&U’s Managing Editor Chael Needle. In selecting the poems for inclusion in this anthology, “I knew I wanted a variety of tribute poems not only in honor of Whitman but also of other queer male poets who’ve lived and died over the past two centuries. It wasn’t enough for me to like a poem; it also had to say something about the dead poet so honored. Many LGBT

people feel like they don’t belong in their own biological families, which is why dead queer poets and writers can truly matter in ways more powerful than those of our own blood. I wanted to experience those connections whenever I read submissions for Lovejets, and I chose according to that criterion. Really, one could call Lovejets a family scrapbook for queer male poets.” Recognizing Raymond’s keen eye for good writing, A&U is honored to welcome him as the magazine’s new Fiction Editor. Raymond has been a long-standing contributor to the magazine, having pub-

lished in A&U’s very first issue in 1991. That poem, “Two Decades and then Some,” which begins with the haunting line, “No one writes about the dead anymore,” can be found at https://aumag.org/2015/08/30/two-decades-and-then-some/. Since that first issue, he has continued to publish both poetry, nonfiction and fiction in A&U, including the poems “Outside Marshall, Texas” (November 2011); “Ghosts” (December 2013); and “Inoculations” (May 2015), each of them a valuable addition to the canon of AIDS-related poetry. Last year, in a blind reading, Raymond won the fiction category’s top honors in the Christopher Hewitt Literary Awards for his short story, “The Love Whisperer.” More recently, Raymond interviewed writer and advocate Nicola Griffith for the March 2019 issue. Prior to joining A&U, he edited the queer fiction journal Jonathan, which was renamed Callisto. He is also a ten-time Pushcart Prize nominee, and the newest addition to A&U’s masthead. “I’m thrilled and delighted to be working for A&U. As Fiction Editor, what I’m looking for is what I think most editors would want from submissions regardless of genre: no stereotypes, no cardboard characters, no clichéd writing. But more importantly, because we are dealing with the topic of HIV/AIDS, I don’t want to see misinformation in the stories I read. Sometimes I’ve gotten a story that made me go, Wait a minute. Is this medically possible? It’s my job to work with writers so they can look truly good on the page.” Flannelwood: A Novel is available on Amazon for pre-order and will be generally available as of June 6, 2019. Lovejets is available from Squares and Rebels at www.squaresandrebels.com/ books/lovejets.html. You can find more information about Raymond on his website, www.raymondluczak.com, and follow him on Twitter @ deafwoof. Some of the poems that Raymond has published in A&U can be found on our website, www.aumag.org. Hank Trout is an Editor at Large for A&U.

s morning light beamed through loft-sized windows over the gaffer’s tape and the seamless paper roll that my photo assistant Julie and I were securing to the studio floor, I glanced a gentle presence entering from the door, left slightly ajar precisely for early arrivals. Flowing into the downtown L.A. space in a loosely fitted, royal blue dress, her hem swept over the sealant of the polished concrete floors casting glossy waves. Like an urban-clad Venus wearing vintage combat boots, she formally announced her arrival by lifting her chin and presenting us with the sweetest smile. Mj Rodriguez was in the house. On a press tour from the East Coast where she was born and raised, Mj was in Los Angeles anxiously gearing up for the Golden Globe Awards, couch-surfing (by choice) with friends and showing up for HIV awareness, a cause dear to both her and her mother Audrey who tagged along for the majority of the trip. Bursting into stardom mainly because of her recent role as Blanca in Season One of FX Network’s hit Pose, Mj Rodriguez embodies her character—tender, nurturing and selfless; all desired qualities in a good mother and much like the person who stands before me, forty-five minutes early with an entourage soon to fill the room. It was nice to spend the quiet minutes getting to know this gentle soul.

turn in television and film. Mj Rodriguez’s role is legendary and toe-to-toe with Vega’s, bringing a welcome and unprecedented mainstream voice to transgender awareness, broadening the representation and thereby imparting a desperately needed depth to this marginalized community. The same can be said for Rodriguez as expressed by Guardian film critic Peter Bradshaw in his review of Vega at the time. Like Vega, Rodriguez beams through Blanca who seems to always be caught “in the act of transcending loneliness, heroically defusing the internal opera of pain, rising above the thousand petty little indignities and hostilities that the world now wishes to add to the ordinary agony [of her life].” Not the death of a lover, Blanca’s burden is a recent HIV diagnosis and I fear for her because of the story’s harrowing timeline. Fans of Pose are in the know of Jennie Livingston’s important, groundbreaking film Paris is Burning (1991), depicting the underground, fashion subculture of Black and Latino gay and transgender New Yorkers still resonating nearly three decades across the visual arts like contemporary film, music, theater, cultural studies, and politics. When originally screened, the critically acclaimed documentary piece won a Sundance Grand Jury Prize, a Berlinale Teddy Bear, and was recognized on ten best-films-of-the-year lists including those of The Washington Post, L.A. Times, Time Maga-

REA

ROLE-MODEL Text & Photos by Sean Black

Although a headstrong outsider at times within her own tribe as Blanca, her onscreen persona shines with maternal light. A young, newly diagnosed runaway, she is determined in her quest to re-create the family she and her “children” long to have. Settling for second best isn’t an option for Blanca and it is a signature trademark that endears her character right from the start. Wanting better she launches her own “house” (The House of Evanglista) sparking competition and rivalry between her former house, The House of Abundance, spearheaded by Mother Elektra Abundance slayed by Dominique Jackson. Set in 1987, Pose is a stylish and bittersweet time capsule brought to life by masterminds Ryan Murphy, Brad Falchuk, and Steven Canals. Pulsating with freestyle jams and sassy sound bites à la Pray Tell (Billy Porter) it recalls Manhattan’s ball culture in tandem with the AIDS epidemic and the devastations of the plague years. The series has been lauded for its scope and telling of trans and non-binary gender individuals. The transgender community has long dealt with slights in media. Through grace, her character is subtly rewriting and righting years of negative stereotypes ultimately transcending truth about the lives of transgender people akin to the persona brought to life by Daniela Vega in her critically-acclaimed performance in last year’s Oscar-winning foreign film, A Fantastic Woman, by Sebastián Lelio. Trans visibility is taking a serious and welcome

zine, and NPR. Pose appropriates and picks up the crucial dialogue that Livingston originated, “examining the intersections of race, class, and gender in an image-conscious, wealth-obsessed society reflecting American anxieties about fitting in and measuring up.” There are no coincidences either that the foreshadowing of our current Trump Administration which looms greedily in a day-trading sidebar enmeshed in Pose’s well executed script. Refreshing to discover in our candid interview is that Mj Rodriguez’s real life is thankfully a faint cry of that of her characters. Born and raised in Jackson Township, New Jersey, Mj’s travelling companion and mother Audrey is employed in the medical finance field and her father. Michael, who is of Puerto Rican heritage, works for a national parcel service. “I was just a ball of energy when I was younger, and they knew there was something different about me. And when I say ‘different,’ I don’t mean it in the context of like something bad. I mean it in the context of something beautiful. “My mother told me a story of when I was very little and how she and my aunt Deborah, who, God bless her soul, just passed away, were in the car listening to Jodeci and the next thing they hear is me in the back seat singing along, ‘Talk to me, talk to me, talk to me, baby,’ mimicking his R&B hit ‘Come and Talk to Me.’ When I got to my early teens and my parents saw that I really,

A&U • MAY 2019

Triple threat actress, singer, voguer Mj Rodriguez is poised to uplift the transgender community one stage at a time

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ing accompaniment. Sheryl Lee [A&U, August 2015] is a Tony-nominated Broadway legend and renowned HIV activist who first began her anti-AIDS work in the late 1980s despite resistance from others in the entertainment industry; encouraged by Elizabeth Taylor to continue her important work, she forged ahead with The DIVA Foundation and created DIVAS Simply Singing! Conceived as a “living memorial” to the many friends and co-workers she’d lost to AIDS, DIVAS Simply Singing! is the longest consecutive running musical AIDS benefit in the country. Ralph is currently planning her 28th Anniversary charity event.

Amid all of the awards-season buzz Mj took some time out to chat with A&U. Sean Black: What have you been up to since Pose’s Season One success? Mj Rodriguez: Fashion shows! [She sweetly giggles then sighs as if slightly overwhelmed.] There have been so many that I have gone to. I think the reason why I am invited is because of the success of the show and that there are so many aspects and nuances derived from the fashion scene and embedded within Ballroom and Ball Culture. It’s literally an underground fashion show blended with performance art. So, I see this culture grow-

photo by JoJo Whilden/FX

really was happy and serious about singing they enrolled me into the Summer Youth Performance Workshop at the New Jersey Performing Arts Center. That’s where it all began. “I met my godfather there. Terrance L. Kennedy was my vocal coach and he taught me for many years in Rhythm and Blues (R&B) training. I earned minors in acting and dance. From then on, I just carried it onto my life. I mean, I had that structure early on from those wonderful teachers and took it with me as I got older through high school until now, in my career.” She is a graduate of Newark Arts

High School and later attended Berklee College of Music where she was a 2009 Star-Ledger scholarship recipient and a 2009 Young Arts first level scholarship recipient. Years of hard work paid off when she landed the role of Angel in the 2011 Off-Broadway revival of Rent, for which she won the Clive Barnes Award later that year. She recently sang and brought a beautiful rendition of “Home” live at Sheryl Lee Ralph’s 27th Annual charity benefit Divas Simply Singing! alongside Pose writer/producer Our Lady J [A&U, November 2018], an acclaimed pianist providMAY 2019 • A&U

Left to right: Mj Rodriguez as Blanca, Ryan Jamaal Swain as Damon in FX’s Pose (Season 1)

The show also featured performances by some of the most talented DIVAS in entertainment, including longtime supporter and fellow Dreamgirls cast member Jenifer Lewis (Blackish) [A&U, May 2005] who in her usual rare and raucous form served up laughter and antics from the red carpet to the showroom floor. Joining the entourage was rising Mezzasoprano sensation J’Nai Bridges who performed a number from Carmen while handing out roses to the audience. Mj was later joined by Pose cast members including Indya Moore, Halie Sahar, Dominique Jackson, and Lady J.

ing up and becoming more mainstream. I think that’s why we [the cast of Pose] are now being embraced and invited to be a part of this increasingly more visible part of our culture and the overall fashion industry. You mentioned being allowed by your parents (in real life) to attend balls in your teens? Well, see, it wasn’t so much that my parents actually allowed me to go to balls. [More chuckles.] They found

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out because I eventually confessed to my dad that I was sneaking out of the house. But, yes, I did get involved in the ballroom scene at around fourteen years of age mainly because of this man I met by the name of Timitheus J. Smart. He became my House Father and he was from the House of Jourdan. It was one of the first houses that is no longer around. He scouted me when I was in high school. He would come to the classrooms and host fashion shows and teach a lot of us kids how to walk runway. He would also bring garments and accessory pieces along with some of the students who knew how to make clothes and sew. Like I said, I was lucky, because my parents knew I was different and unique, and being middle-class they sacrificed a great deal to send me to quality art programs and art schools.

For me, personally, I’ve always expressed myself as someone who is just simply ‘me.’ I never really aligned or labeled myself with a particular gender per se. I just saw myself as a being walking through the spaces of life, and that’s what has made me so confident ever since I was a kid. When did you first learn about HIV/AIDS? HIV/AIDS came on my radar when I was very young. My mother Audrey had diverse friends. I heard stories from her. She would tell me about friends who were HIV positive that developed AIDS and then passed away. I remember her telling me about the brother of a close loved one who died. There were so many people during that window of time that were dropping off completely, like one, two, three, twelve at a time. Of course, I remembered seeing about it on the television as well and in the news and also trying to do my own independent research. I remember thinking, “Wow!, this is something that needs to be taken very seriously. There was this moment back then where I thought, hopefully when I get a chance, I’ll have a platform where I can emote my feels and create awareness around this through my art, or be able to speak about the struggles that my mother had to go through witnessing friends that passed away so young. Just disappearing right before her eyes.” I finally got that opportunity in my role as Angel in Rent. So, it came to full fruition, being able to be a voice for people who are dealing with HIV/AIDS and making sure that they know that they are not alone.

“It was the place where my fellow house members taught me and him how to vogue.”

Any special moments or memories? I remember one day, when Timitheus saw me ‘walk,’ he came right up to me and said, “That’s my daughter.” And that was that. From then on, I would go into New York City with him. He brought me to the place known as Ripley-Grier, where I auditioned at a whole bunch of times. It was the place where my fellow house members taught me and him how to vogue.

I imagine that liberation and support of your family and school helped shape the talented person we see today? I think it did. It helped me in a way to develop my confidence and I got to own who I was at a very young age. My high school was very, very well-versed in the arts and in people like me. They had a slew of programs in drama, dance, voice, instrumentals and cinema that were geared towards artists, and it was a space for me to feel comfortable and confident in myself and I have always been very confident in my artistry.

When we first met at our photoshoot you spoke candidly about the importance and responsibility in taking care of our sexual partner(s). Can you continue this dialoague for our readers? I have always thought no matter the situation that it is important to take into consideration the other person or other people. Regarding sexual intimacy I think that it is important to know your status and get tested. Be responsible. I think then you should also always share your status with your partner before you indulge in anything, especially when it comes to pleasure, because sometimes people get lost in the moment and they don’t think clearly. Selflessness is a great act of kindness because when you are selfless, you are acting out of the care of the other person. You never really know what the person might tell you or what they may say, but most importantly, you know and hopefully they’ll appreciate you more. Makeup: Anton Khachaturian for Exclusive Artists using M•A•C Cosmetics Hair: Kat Thompson for Tomlinson Management Group Photo Assistant: Julie Shafer Wardrobe/Styling: The amazing Viktor Luna www.viktorluna.com Shoot Location: Apex Photo Studios www.apexphotostudios.com For more information about the Divas Simply Singing logon to: http:// divatickets.com or follow on Facebook at https://www.facebook.com/ DivasSimplySinging/. For the latest about Pose on FX Networks follow @Poseonfx.

When did you realize you were different or unique? MAY 2019 • A&U

Sean Black photographed Lillibeth Gonzalez for this issue.

To Be Continued... Lillibeth Gonzalez, a long-term AIDS survivor, used her pain as a stepping stone into her “golden” years by Candace Y.A. Montague

photographed exclusively for A&U by Sean Black

hen you see a vivacious woman like Lillibeth Gonzalez smiling, laughing, hugging people, engaging in lively conversations with multiple strangers you may admire how positive she is. You may think that she has the world on a string. And maybe she does. But still waters run deep. A woman like Lillibeth has paid her dues in heartache and tears to get where she is today. She has given until it hurt and has taken more than her share of blows in her lifetime. Yet here she stands self-assured, content, and amazing. Her story is a living testament of how a diagnosis won’t break you when you’re surrounded by love. When love hurts Lillibeth Gonzalez is a native New Yorker born to Puerto Rican parents on November 20, 1954. Life for her on the lower East Side of Manhattan was turbulent at times but no doubt an experience that built her fortitude. Her father was an abusive alcoholic. He gave her mother and three siblings a “terrible life,” which meant a lot of transitioning from home to home. In spite of family issues, Lillibeth prevailed. She graduated from high school determined to make a better life for herself.

That good life included education, a thriving modeling career and love. Only one of them worked out well. “I went to college and studied management engineering. Then I met a lawyer and he wanted to marry me. He was a very good man. I was like his China doll. But then I fell in love with someone else and things did not work out.” Love “ruined her life.” She grew depressed, quit her eleven-year career as an assistant at Gouvernor Hospital and dropped her modeling career. Self-medication, the risky practice of attempting to eradicate physical and emotional pain without professional guidance. It’s a natural human reaction to an affliction. When something hurts you try to make it stop. At age twenty-seven, Lillibeth was hurting and she tried to make it stop. She tried with alcohol. She tried with drugs. “That was my therapy from losing my job, my modeling career and not being able to cope with my problems. I didn’t want to have to deal with reality.” The drug use came to a halt in 1983 when she found out that she was pregnant with her son. A&U • MAY 2019

Another thing about pain is that it makes you tired. After many years of drug misuse, Lillibeth was tired. She wanted to protect her unborn. She joined a treatment facility and started MMTP (methadone) treatment. It lasted thirty-one years. But then fatigue slipped in again. “Let me tell you something. You can normalize things without even realizing them. I saw a man in the program walking with a cane and I thought ‘oh my God. I don’t want to be like that.’ So about six years ago I was very adamant about getting off the methadone. Thank God today I’m living drug free.” “I made a bad choice in love” In 1992 the New York City Department of Health and Mental Hygiene had reported roughly 10,000 AIDS diagnoses in the city. According to the Latino Commission on AIDS by 1995, Latina women in New York City represented thirty-four percent of all New York female AIDS cases. Nearly 7,000 people died from AIDS-related complications in 1992 in New York City. Magic Johnson, a revered NBA legend, stunned the nation when he announced that he was retiring from basketball and had been living with an HIV diagnosis. And although President Bush signed the Americans with Disabilities Act of 1990, which outlawed discrimination against people living with HIV, his relative inertia regarding prevention and treatment added another layer of stigma. Becoming a “long-term survivor” was like a birthday wish. Lillibeth was all too familiar with the wrath of AIDS in her own family. She lost two brothers and a sister to AIDS-related complications. “My first brother died on April 20, 1988. My second brother died in 1991. And then my sister died on March 17, 2005.” From the start, she said, “I never thought I would get it. In fact someone called my mom to tell her [one of] my brothers was dying of AIDS while he was incarcerated. When I saw him he was so thin you could see his ribs and the bones on his buttocks. He had thrush. He couldn’t even walk.” As she tried to move on with life while grieving loss, she met a man. He was an old acquaintance that made her consider dating again. “I saw a friend of mine that I had known for years and I always liked him. He was a bodybuilder and he looked so good and I said ‘okay I’m going to check him out now.’. We were together for about three years and I didn’t know he was HIV-positive already. I didn’t know that he was transmitting the virus purposely. I made a bad choice in love.” She saw a bottle of pills on his dresser one day and asked him what they were for. He said they were vitamins. She believed him. But after visiting her brother in the hospital and noticing the same bottle of pills used to treat thrush in his room MAY 2019 • A&U

she made a crushing connection. “My heart hit the floor.” Her boyfriend died not too long after that. Lillibeth went to get tested. “I went to the Poly Clinic in the East Village to get tested for HIV. That was a devastating experience. The nurse came in and threw my chart on the desk and said, ‘You’re HIV-positive’ and then walked out. She left me there alone. I said oh my God. They were very cold in those days. They thought you deserved to get AIDS. We were the undesirables. If you were HIV-positive you were either a drug abuser or a prostitute. So they treated us very badly. I was just sitting there thinking I don’t want my son to know. I don’t want to die!” A new home Being diagnosed in the early 1990s and after seeing two siblings already lose the battle against AIDS, Lillibeth knew she needed help. She came across the Gay Men’s Health Crisis, a multifunctional center where people with HIV and AIDS can find resources, a good meal, and a judgment-free listening ear. “When I was diagnosed I didn’t know of any resources. So my nurse gave me a flier and it was for groups. GMHC was the first organization to open their doors to me twenty-six years ago. After that first group I said, ‘Okay. This is my place.’ GMHC saved my life.” She started volunteering at the center which made it easy to attend groups. One day the workforce coordinator called her and asked if she was interested in working there. It was only a six-month contract to be a receptionist. Lillibeth took the job without hesitation. A receptionist position led to working with GMHC’s Women’s Institute. Multiple trainings and certifications opened the door for Lillibeth to become a health educator. She gets excited about educating women, specifically Latinas. “I think women are underrepresented in so many ways. We need to focus on women and HIV as far as the virus and as far as the research. They need to do a lot more research for women. It’s very important to get the Latino community involved because they are stigmatized. They’re afraid to get tested due to their religious beliefs and a lot of machoism. Our tradition is ‘you do not discuss your medical issues, especially if you’re HIV-positive.’” Lillibeth is working through those walls daily. She has been at GMHC for twelve years. Lillibeth’s longtime friend Elder Antionettea Etienne says that her confidence has grown over time. “She was not resilient when I first met her. She was in turmoil. Her mother was sick. Her sister was sick. She had a little boy that she was fighting to keep him. I was fighting with her to stop getting high.” Etienne, a Health Educator/Test Counselor at Iris House in New York, worked on helping Lillibeth to redirect her thinking about her

self-worth. “We had to work on her self-esteem. It seemed like any relationship that she entered whether with a male or female they did something negative to her. And she accepted it. So we had to get to the point where she would say, ‘No I’m not accepting your bullshit anymore. You treat me the way I want to be treated.’” Lillibeth also admits that she has grown in her interpersonal relationships. She has found support in friendships with women. “Lillibeth’s been through a lot and she still keeps going because that’s what we do. She’s very important to me. I consider her a sister-—una hermana,” Etienne exclaims. To be continued... Although Lillibeth has lost her parents and siblings she still has the love and support of her son and nephew. And she has earned many accolades including being recognized as a part of the Poz 100:Celebrating Women in 2017 and again in 2018 celebrating people 50 and over. As for her AIDS advocacy, she’s simply not done working yet. In 2018, Lillibeth was given a grant to hold a one-day conference at GMHC to share current research, intervention strategies, activities and ways to increase overall health with a focus on individuals of color who are living with HIV fifty years and beyond. The conference was held in partnership with AIDS Community Research Initiative of America (ACRIA), NMAC, Gilead Sciences and Alzheimer’s Association of America. The one-day conference was so successful she was given a new grant to hold bi-weekly single session groups themed “Thriving at 50 and Beyond.” These groups aimed to reduce social isolation, depression and stigma for anyone living with HIV and who are fifty years of age and above and train participants to understand comorbidities better to improve their overall health outcomes. What will her next move be? After being active with the U Equals U campaign, Positive Women’s Network–USA and invited to speak at the United States Conference on AIDS, she’s ready for anything. “I still hear comments in regards to HIV. I tell them I’ve been living with AIDS for twenty-six years. They say, ‘What? You’ve been living with AIDS? Shouldn’t you be dead?’ I say ‘No. I’m quite alive. And I will be living for a quite a long time.” For more information about GMHC, log on to: www.gmhc.org. Candace Y.A. Montague is an award-winning freelance journalist based in Washington, D.C. Her work has been featured in a number of print and online publications including The Washington Post and The Washington City Paper. Follow her on Twitter @urbanbushwoman9.

Actor Adam B. Shapiro talks about The Normal Heart, de-stigmatizing HIV and bridging divides Text & Photos by Alina Oswald

any might recognize NYC-based actor Adam B. Shapiro from his appearances on screen and on stage, in TV shows like Friends from College or The Marvelous Mrs. Maisel and movies like The Cobbler. Many more might remember Shapiro from the Yiddish-language production of Fiddler on the Roof [A&U, July 2018] now playing at Stage 42, in New York City, or as the memorable, funny and fascinating Bella in the AIDS-themed The Normal Heart on HBO. And, so, I couldn’t believe my fortune of having Adam B. Shapiro, himself, in my studio, to interview and photograph him for A&U. As I find out, the B in Adam B. Shapiro stands for his middle name, Burton, which is his grandfather’s name. The actor added his middle initial when joining SAG-AFTRA, for The Normal Heart, in 2013. Yet for him, the B can have other meanings, too. It can also stand for Bella, the character he plays in The Normal Heart, for Broadway or for Baker, because baking is one of his hobbies. Being in the presence of Adam B. Shapiro is a delightful experience. He’s funny and graceful. His stories make you laugh and ponder in the same time, as you hang on to his every word. Adam B. Shapiro grew up in Indianapolis, Indiana. He discovered he had “the acting bug” when he was in kindergarten. “My school was having a talent show, and I really didn’t know what that meant, but I knew that I wanted to be in it.” His mother knew that he loved Disney movies

and encouraged him to do the talent show. “[Once] on stage I was very nervous,” he recalls, “but I remembered everything. At the end everybody applauded.” He pauses, as if reliving that moment. “I heard the applause and pretty much knew [then] that I was going to be an actor.” Shapiro acted, sang and danced all through high school. He spent two summers studying at the Interlochen Arts Academy in Michigan then went to Indiana’s Ball State University. He graduated in May of 2004 and by September he moved to New York City to pursue his acting career. In the spring of 2013, Shapiro received an email from his manager. The subject line said “Appointment HBO’s The Normal Heart.” Shapiro was familiar with the play, and also aware that many actors wanted to get in the movie and, at the time, he had only one TV credit. And so, instead of just hitting Reply, he picked up the phone and called his manager. At his manager’s

insistence, he opened the email and read the character’s description, which, in brief, said: larger than life, bearded hairy guy, dirty sense of humor, life of the party. “And I just read this and go, oh, that’s me all right!” After the initial audition, he got called back. He found out that it was down to two actors. “They wanted me to come in a uniform of some sort,” Shapiro says, explaining that the character, Bella, has a uniform fetish. And so, in twenty-four hours he came up with the idea of a giant boyscout uniform on which he attached scout badges he’d printed out. “I looked both fabulous and ridiculous,” he recalls. “The cast director came out, took one look at me, and started laughing. And I’m thinking, I just made a big fool of myself or I got the part…and I got the part.” Shapiro calls the experience of playing in The Normal Heart “one of the most exciting, humbling, overwhelming projects [he’s] ever done.” The Normal Heart was the first movie he got to be in. He got to work with actors he’d admired and respected for a long time, actors like Mark Ruffalo [A&U, May 2014], Julia Roberts, Jim Parsons, Matt Bomer and B.D. Wong. Larry Kramer’s 1985 play is an important piece, from a theatrical, as well as from a gay, and a historical standpoint; it was one of the first to address the AIDS epidemic. Adam B. Shapiro’s character, Bella, is interesting, intriguing, and funny, and appears in various scenes—either moving a sofa with Bruce Niles (played by Taylor A&U • MAY 2019

Kitsch); having a snappy exchange with Dr. Emma Brookner (Julia Roberts); or watching with the other guys, as she makes the speech to the medical board, and which ends up with her screaming and throwing the papers. Throughout the movie, Bella proves to be a unique character, as the only character to offer a hint of humor—and with it, a glimmer of hope—to the story. “I was very happy that [Bella] got to be the funny guy,” Shapiro says. “I think my character was one of those people [who believe that] if you stop trying to smile then you’ve lost. My mission in all of this was to try to make people [smile].” Shapiro also met Larry Kramer, who was very involved with the making of the movie. The actor still recalls “the very best day by far” on the set of The Normal Heart, in June of 2013. “It was the day we were shooting the big disco fundraiser scene, which had over 200 background actors, and we were all dressed to the nines.” It was the day when the Defense of Marriage Act was repealed, opening the path to marriage equality nationwide. “I found out about it while I was in hair and makeup. Larry Kramer was there that day. At one point he got up on stage and someone gave him a microphone. And he said, ‘We won!’ [in the microphone] and everybody cheered….” The Normal Heart offers many of us, including the actor, an opportunity to look at the early years of AIDS through the lens of time. “I was very young when the AIDS crisis was at its height,” he mentions. “Not only that, but I grew up in Indianapolis, [where the epidemic] wasn’t as visible as it was in New York City or San Francisco. We started hearing about it, and pretty much [right away] I understood that AIDS means you die.” He was aware of only one person who died of AIDS-related causes, a MAY 2019 • A&U

hairdresser who worked at the hair salon where his mother and grandmother got their hair done. Perhaps being Indianapolis, there was much talk about Ryan White. Shapiro still remembers going to an Elton John concert in Indianapolis—that was right after John’s winning the Oscar for The Lion King. At that concert, Elton John dedicated “Can You Feel the Love Tonight” to Ryan White in “a very emotional” performance. Shapiro reminds that, because of his age and location, there was a lot that he didn’t know about the AIDS crisis. That changed once he moved to New York City and started meeting people who had lived in the city in the eighties, or who were, themselves, living with HIV, and who had witnessed, first-hand, “how horrible everything was” at the height of the epidemic. “Then, doing Normal Heart, allowed me in some way to step back to that time and witness certain things—some were evident while we were filming; others, once

the movie was finished. [When] I saw [the movie] for the first time, they hit me even harder, and drove a lot home.” Shows like The Normal Heart and Fiddler on the Roof, both shows Shapiro has been a part of, open our minds and take on, each in its own way, universal issues. Issues like the reality that, sometimes, life as we know it changes forever, the uncertainty and the us-vs.-them divide created in the wake of such changes, and also the sliver of hope that guides us through it all. At its height, the AIDS crisis helped create such a divide. Since then, treatment and prevention have come a long way yet, HIV-related stigma is still around, blocking the way to completely bridging that divide. Therefore now “there’s a lot of work being done to destigmatize HIV,” Shapiro comments. A way of doing that, of becoming more accepting of others, is by becoming more open to new information, he suggests. And one doesn’t only have to become more accepting of others, but also accepting of oneself. He recalls he once heard an interview with Carol Burnett. “She said, ‘I try not to play the what-if game.’ That’s something that really stuck with me, because, especially as an actor, there are lots of jobs that I audition for that I don’t get. And it can be very tempting sometimes to [ask myself ] ‘what if I have gotten this [role] or what if I have done that….’ And now I try not to do this, because, what if I had? I think, the idea is not wondering what might have been, but realizing what has brought you to where you are and knowing that you can always change course moving forward.” Find out more about Adam B. Shapiro by visiting: www.adamshapiro.xbuild.com; or follow him on Twitter @TheAdamBShapiro. Alina Oswald is Arts Editor of A&U.

A Healthier System

he raucous debate over healthcare reform has faded, along with any hope of a resolution before the next election. Meanwhile, the nation’s healthcare system, that ailing leviathan cobbled together over many decades, just lumbers along without any clear guiding principle or direction. The whole debacle has been the grist of many interesting conversations with my doctor, Charles Skiba, as I lay on his examination table. I feel compelled to pass on what I learned. A well-informed public must join in the healthcare debate. Otherwise, their interests will be stifled by the more powerful competing interests of business and government. Skiba eagerly shares his provocative insights into our convulsing healthcare system from a doctor’s point of view. Los Angeles-based Dr. Charles Skiba, Jr. has been a practicing physician for twelve years. He received his medical training at Michigan State Osteopathic School of Medicine and completed his residency at Northwestern Hospital in Chicago. Dr. Skiba is board certified in family practice and family medicine and is credentialed as an HIV Specialist by the American Association of HIV Medicine. His views emanate from a fundamental premise. “Congress,” he contends, “has ruined this country’s healthcare system. They failed to come up with a viable public health policy and so Wall Street now drives the system. When financial interests override the interests of the patient, the healthcare system is doomed. We have to eliminate what we have now and start fresh.” How can the system be fixed if you dismantle it? “It can’t be fixed,” he counters. “We can’t have a state-bystate system. The delivery of healthcare should be standardized across the country so that everyone has equal access to care. And by the way, it’s not a matter of a person’s right to medical care, it’s about the community. As a society and as human beings, we have to protect the community’s health because pathogens

Mark Rebernik

dr. charles skiba, jr., shares his plan

don’t discriminate between the insured and the uninsured. “Those living in the large, more progressive, East and West Coast cities may not realize that HIV is still stigmatized in many parts of the country. Imagine what it’s like for a person in a rural community who is seeking HIV testing or treatment and the only doctor near you is your old family physician. “New York and Los Angeles are magnets for doctors who seek the greater financial and professional opportunities they can offer. Consequently, many areas of the country have fewer doctors to serve the needs of the community. “In Los Angeles, for example, where I treat many patients living with HIV, there are plenty of specialists and treatment facilities to choose from. While in other parts of the country, far fewer doctors per capita deliver care. This puts a lot of stress on regional healthcare systems.” Skiba advocates for a system in which doctors are public employees. This, he argues, would stem the tide of doctors migrating to large metropolitan areas. Care centers established across the country would offer equal access to medical care, testing and education. The quality of services offered to patients would be as good in Kansas as it is in New York

or California. “Doctors would have the right to opt out of the public system and go private,” he points out, “but medical students would no longer have to face massive student debt just when they begin their medical careers. The cost of their education would be subsidized in exchange for public service.” I ponder out loud why the American Medical Association, the uber-powerful Washington lobby, doesn’t use its clout to shake things up. Skiba shoots me the look one gets after asking a dumb question. “It’s the giant insurance and pharmaceutical companies that have the lawmakers in their back pockets,” he insists. “Legislators and businesspeople who don’t know a lick about A&U • MAY 2019

photo by David Daigle/www.daviddaigle.com

healthcare are now making decisions about the delivery of medical care to patients.” He takes a beat then declares firmly, “That’s wrong!” Since he’s already fired up, I raise another sensitive issue. Aren’t doctors a big part of the problem? After all, everybody complains that doctors charge too much. He flashes me that look again. “Nobody suffers through more than a decade of rigorous and costly medical training to get rich. If that’s all they want they go to Wall Street, not medical school. “I earn less today than I did ten years ago, yet my expenses still go up. Doctors are the only professionals in this country whose reimbursements from insurance are defined by Congress. In effect, our incomes are set by Congress.” I was intrigued by his statement. “A doctor,” he explains, “sends the patient’s bill to their insurance company, who reimburses the doctor for a fraction of the actual amount of the bill. If the patient has met their deductible, the doctor can’t ask the patient to make up the difference. “In exchange for joining the carrier’s network of ‘participating providers,’ doctors must agree to accept the carrier’s

MAY 2019 • A&U

predetermined rate of reimbursement,” says Skiba. “Patients depend on their doctor remaining in their carrier’s network, otherwise, they are forced to find another doctor who is ‘in network.’ The patient loses the doctor with whom they have built up a trusted relationship, and the doctor loses their patient. This is why doctors are giving up their practices or converting them into ‘boutique’ practices that don’t accept insurance reimbursement,” he explains. “Most of my patients who are living with HIV live pretty much from paycheck to paycheck because Los Angeles is such an expensive city. They could not afford the level of care they receive without health insurance.” I still wasn’t clear about the role of Congress in determining a doctor’s income. “The percentage of the doctor’s bill that is actually reimbursed to the doctor,” he points out, “is tied to the percentage set by Congress for the reimbursement of doctors treating Medicare recipients. Insurance companies generally adopt this Congressional formula for all of their policyholders.” After my talk with Skiba, I reviewed my own insurance statements. In April of this year, I had my annual check-up

and lab work. The insurance statement indicated that my insurance company was billed $668.00. In turn, they reimbursed Skiba’s office $185.83, representing twenty-eight percent of the actual bill. Looks like I have a pretty good deal, right? Well, my insurance premium is $900 a month. Perhaps it’s time for the “leader of the free world” to catch up with the rest of the world. “I don’t want to come across as a whiner and complainer,” Skiba offers. “America’s ability to provide patients with the most up-to-date care is unsurpassed. Our potential is limitless, but the system has broken down. Old ideas and assumptions no longer work. We need a new approach. “Doctors have as much to gain as their patients from healthcare reform. Everyone must have equal and affordable access to medical care.” Heading off to his next patient, Dr. Skiba concludes, “There shouldn’t be a price tag for saving a life.” Mark Rebernik is a contributing writer to A&U. He is a college instructor of law and an attorney based in Los Angeles.

Hope or Hype?

n March 4, 2019 at the Conference on Retroviruses and Opportunistic Infections (CROI) it was announced that a second person has achieved an HIV sustained remission, i.e. “cured.” Joining a club that until now had only one registered member (Timothy Ray Brown), an unnamed British man underwent a stem cell transplant and has remained off treatment with no sign of HIV for eighteen months. As I write this, two weeks after the “London Patient” announcement, the media is still abuzz with news of this report. Articles and posts have ranged from one extreme to the other with some proclaiming an end to HIV while others dismissing any validity or significance to the London Patient news. So what exactly does this new case mean? To add my two cents to the ever-growing pile of opinions: If this person is in fact in remission, which is still a big if, then, yes, this is relevant. But is this huge, earth-shattering news? No. However, it is important and should shed hope. A second (and maybe third and fourth) person means that Timothy Ray Brown’s sustained remission was not a fluke, an accident or the gods shining down on one man. As Timothy’s case is now believed to be replicated, there’s a real possibility of it being replicated again. And again. One very small group of HIV-positive individuals—those with very specific forms of cancer in need of stem cell transplants who live in countries where this can be afforded—may truly have the potential of a long-lasting remission. More importantly on a wide-scale basis, there is now more reason to believe that gene therapy, although expensive, may be a road that could lead to similar results and is worthy of research dollars. Perhaps my biggest concern with the London Patient remission is the short time period that he’s been off treatment. Why after only eighteen months has he been proclaimed to be in remission? Is it not too soon? After all, didn’t we have our hearts somewhat broken after the Mississippi Baby? If you recall, the Mississippi Baby was off of treatment for twenty-eight months before her virus rebounded. In her case, prior to rebound, no detectable replication-competent virus was found (with highly sensitive assays) in resting CD4+

T cells. Additional time would have solidified this case as a true remission. I can’t help wonder if this announcement, which seems to be premature, had more to do with the timing of CROI, one of the most prestigious HIV scientific conferences, than with the actual time the London Patient was off treatment. Of all the media coverage on this report, there was one that, to me, stood out above the rest in being irresponsible. Not because it misrepresented the data or touted “the end of AIDS,” but actually the exact opposite. Healio Infectious Disease News published a Q&A on the significance of the London Patient news. They interviewed Sara Butt, MD, Assistant Professor of Clinical Medicine and Program Director of the Infectious Diseases Fellowship at Indiana University School of Medicine. The question posed to Dr. Butt: “What should clinicians take away from this report?” Her answer: “This case report is not newsworthy for common people living with HIV (PLWH) because there is not going to be a widespread cure for HIV in their lifetime. There are multiple researchers working on HIV latency-reversing agents, but the answer is not near. Clinicians need to be diligent in educating their patients with HIV about excellent HIV medications that are already available. We have made great progress in ART [antiretroviral therapy]. We have multiple combinations of ART available in pill form. Most patients have to take only one or two pills daily to keep their virus suppressed or undetectable.” She goes on to further state, “We need to focus our efforts on the tools we have available. If we put the entire at-risk population on PrEP and all HIV patients on ART, we can end the HIV epidemic pretty quickly.” Dr. Butts’ reply is not only disheartening with her overly pessimistic, crystal ball view of cure/remission research but portrays an attitude too often seen in HIV

treating physicians—that ART (in its current form) is an acceptable solution. It is not. Although ART has saved millions of lives, ART is linked to numerous HIV complications, co-morbidities, and side effects, and is not financially sustainable worldwide. Research to understand viral reservoirs and to test a wide variety of potential remission therapies and strategies is essential to ending the HIV pandemic. Our current course seeking to test and treat everyone in hopes of achieving widespread viral remission, along with providing PrEP to all at risk, is proving not to be an effective one. This is evident by the millions still not on treatment, the continued growing rate of HIV and those living with and dying from heart disease, liver disease, kidney disease and other illnesses associated with ART. Whether you believe or not that the London Patient’s remission is a true remission and reason to celebrate past the individual benefit for another human being, one thing we should all stand firm on and continue to fight for is the need for ongoing research into remission and eradication strategies and continue until there is not one person on this earth still living with HIV. Jeannie Wraight is the former editor-in-chief and co-founder of HIV and HCV Haven (www. hivhaven.com) and a blogger and writer for TheBody.com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in New York City. A&U • MAY 2019

illustration by Timothy J. Haines

another person has been “cured of AIDS,” but questions remain

E R U CULT THE

Allows and Magnificent Obsession. Sirk was the perfect director for Hudson. Well aware of the double life that Hudson lived, going to incredible lengths to hide his homosexuality at a time when gay actors lived in constant terror of being outed by Confidential or other movie magazines, Sirk understood that Hudson would have a special affinity for “characters in the throes of an identity crisis.” It is no surprise that those two films contain some of Hudson’s finest screen work. Hudson’s relationships with many lovers are also detailed here, including Marc Christian who, after Hudson lost his battle with AIDS, sued Hudson’s estate for “palimony” and for Hudson’s having knowingly exposed him to HIV . Although Christian won the suit, the $21-million award was reduced to $5-million once Christian’s dishonesty was revealed. Griffin renders the actor’s sad struggle

S D AI OF

BOOKS

Men Touching

by Henry Alley Chelsea Station Editions

n this beautifully wrought new novel, Henry Alley explores the complexities of a flawed leading character with great sensitivity and unexpected depth. In doing so, he brings to life again a typical gay man of the mid-eighties with all the fears and hopes of that particular time in our culture. Robb is the divorced stepfather of a teenaged daughter who may think he’s finally living life outside of the closet, yet is still ensnared by it. He revels in the male form, but lacks the real ability to connect with another man spiritually and physically. His many demons hold him back; he is haunted by the ghosts of a brief but traumatic few months spent in Vietnam, not feeling himself worthy of being called a veteran. He loved another man there, a man who caused a fatal accident while he was in the same Jeep, causing debilitating physical pain as well as psychological trauma that Robb just can’t seem to get beyond. He finally spirals into addiction and mental illness and it seems doubtful that he’ll ever come out of it whole again. Waiting patiently on the sidelines is his lover, Bart. He tries to support Robb in any way he can, but his patience and his love for this man are sorely tested. He’s undergoing the additional stress of coming out to his own, less-than-thrilled, family. Then there’s the additional trauma of a good friend and former lover being diagnosed with AIDS. AIDS isn’t a major theme of the book, but Alley incorporates it appropriately and accurately, its having the effect it did on our community at that time and in that place. It’s never not there, always in the background and on the minds of the book’s central characters. And this is what this engrossing novel does so MAY 2019 • A&U

well, it explores the emotional and intellectual lives of its central characters with captivating verisimilitude. Alley has a rare gift and once again captures the truth of a mature gay man from a time and a place obviously both personal and sacred. —John Francis Leonard

All that Heaven Allows: A Biography of Rock Hudson by Mark Griffin HarperCollins

he title of Mark Griffin’s biography of Rock Hudson—All that Heaven Allows— is taken from one of Hudson’s most memorable movies, the 1955 tearjerker co-starring Jane Wyman and directed by frequent Hudson collaborator Douglas Sirk. Like its namesake, Griffin’s book is full of the kinds of melodrama that marked Sirk’s work. At times as I read this book, I thought, this could have been called The Men in Rock Hudson’s Life, as it details the star’s relationships with dozens of men—the father who abandoned his family early in Rock’s life; Henry Willson, the notorious agent and pimp who accumulated, polished, and trotted out dozens of Physique Pictorial-ready muscular young movie-star-wannabes (including Tab Hunter), almost always in exchange for sexual favors; Raoul Walsh, one of the first directors to sense more in Hudson than just beefcake (a word that was first used to describe Hudson); and most importantly, perhaps, Douglas Sirk, the German-born director responsible for eight of Hudson’s films, including All that Heaven

with and death from AIDS in respectful tones, trying to avoid the sensationalism that characterized media coverage at the time. But this section struck me as too short—it begins on page 372 of this 410-page book and seems to skim the surface of details we are all already familiar with. All that Heaven Allows is thoroughly researched and entertaining. Neither sugary hagiography nor a salacious kiss-and-tell hatchet-job, this book should please any movie buff with an interest in Hudson’s life and work. —Hank Trout John Francis Leonard writes the column Bright Lights, Small City for A&U. Hank Trout interviewed Raymond Luczak for this issue.

A Calendar of Events

A&U • MAY 2019

photos by Huey Bui Photography

his summer Radiant Health Centers will host the 33rd Annual AIDS Walk OC on Saturday, June 1, at the Huntington Beach Boardwalk in California. AIDS Walk OC 2019 is one of the oldest AIDS walks in the U.S. and, like all the AIDS Walks across the country, makes an immediate impact in the lives of those in the community living with HIV/AIDS. In just the last eight years, AIDS Walk OC has raised more than $3 million—in 2018, the Walk raised $200,000—helping to provide needed care for those infected and affected by HIV/AIDS in Orange County California. “When you support AIDS Walk OC you are supporting programs that directly change the lives of people living with HIV and those most vulnerable,” said Phil Yaeger, Executive Director and CEO of Radiant Health Centers, which has been providing exceptional care and support to people affected by HIV and their loved ones since 1985. “We are tremendously grateful for those who walk and donate to this annual event.” AIDS Walk OC 2019 will include a family-friendly 5K walk; a Fun Zone for kids and adults; entertainment by the Orange County Gay Men’s Chorus, Men Alive, Huntington Beach School of Rock, and Ballet Folklorico Pasión Valparaiso; vendor booths, and—they promise—fun in the sun! Learn more about Radiant Health Centers by following them on their Facebook page or log on to www.radianthealthcenters.org/ awoc. You may register for AIDS Walk OC 2019 at RHC’s website or www.aidswalkoc.org/oc.

MAY 2019 â&#x20AC;¢ A&U

Vending Machines on a Mission

Connie Rose las vegas rolls out a tried and true

harm reduction initiative

at The Center, where the third vending machine was recently installed. “People are already engaging in these behaviors, and anytime someone’s engaging in a behavior that could cause them some potential health side effects, we want to encourage them to reduce their risk of harm.” In 2017 HHS declared a public health emergency and announced a 5-Point Strategy to Combat the Opioid Crisis. By points they are: • Improve access to prevention, treatment and recovery support services • Target the availability and distribution of overdose-reversing drugs • Strengthen public health data reporting and collection • Support cutting-edge research on addiction and pain • Advance the practice of pain management The harm reduction machines have been successfully working for more than a decade in places like Europe and Australia. By providing people who use injectables a vending machine option we are reducing one more barrier for them. Traditional needle exchanges take resources, time, money, and volunteers to staff mobile or on-site programs. But those are only some of the obstacles, there is also the stigma that sometimes comes with people who use drugs that try to access harm reduction materials. If someone who uses drugs is stigmatized by an untrained volunteer while asking for a cleaning kit, they are more likely to not come back to that center or clinic, putting them at risk of practices that may cause harm. What is in each of the kits being offered? The cleaning kits will include alcohol wipes, a disposal container, Band-Aids, cotton balls, and a small container of bleach and saline. Clients are able to use their card to obtain clean needles in a variety of sizes/

gauges that also come with a hard-plastic container for them to use to dispose of needles safely and each vending machine should be equipped with a disposal receptor for used needles attached to the side, that is only accessible by a key. Narcan is also available in the vending machines and also at each facility for anyone who asks. Eventually pregnancy tests, safe sex kits and additional harm reduction materials will be available as a selection. Needle exchange programs do not just prevent the spread of disease among people who use injectables. They also prevent abscesses, infections and damage to veins, helping better maintain overall health for people who are most at risk and marginalized. There is zero evidence that needle exchange programs encourage drug use but there is overwhelming evidence that they curb the spread of disease in any community able to provide it. Great work, Nevada! Connie Rose is a person living with HIV since 1996. Connect with Connie on Facebook @ connie.rose.739 and Twitter @Cricketlv.

photo by Christina Perreira/Trac-B Exchange

arm reduction materials, safe sex items, pregnancy tests, and a variety of different needles gauges are not the normal items that come to mind when you’re thinking about what to get from a vending machine. Unless, you’re living in Las Vegas, Nevada. The state joins Puerto Rico, Europe, and Australia in providing people safe and automated access to clean syringes, and harm reduction materials. The privately funded project is a collaboration between the Southern Nevada Health District, Nevada AIDS Research and Education Society, and Trac-B Exchange. This project is the direct result of the successful passing of the syringe access bill (SB410) authored by Senator David Parks and signed by then Governor Brian Sandoval on Wednesday, June 12, 2013. Senator Parks is quoted in his first session as wanting to pursue, “employment non-discrimination, HIV/AIDS state funding and decriminalization of hypodermic needles.” Twenty-five years later and he has come through on those issues for Nevadans and many more. He is also a champion of the LGBTQ community and an avid supporter of women’s rights. The first harm reduction vending machine was installed at TracB Exchange, located at 6114 W. Charleston Blvd., Las Vegas, Nevada, and presented to the community on April 13, 2017. The second vending machine was installed at AID For AIDS of Nevada (AFAN), located at 1830 E. Sahara Ave #210, not long after that. And most recently the third one was installed at The Center, located at 401 S. Maryland Parkway. The vending machines cannot be accessed by just anyone; they must be a client of one of the already established locations where the vending machines are located. They must obtain an electronic key card from a staff member at the facility that has a unique customer code. Each card then keeps track of and restricts the amount of times the person accesses harm reductions materials. And the vending machines do not accept money at all. “This is a harm reduction approach,” said Todd Dickey, HIV Services Manager

A&U • MAY 2019

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.