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

MAY 2018 • ISSUE 283 • AMERICA’S AIDS MAGAZINE

FILM FESTIVAL

SUMMER 1993 & AFTER LOUIE VIEW GENERATIONAL LOSSES THROUGH DIFFERENT LENSES

*plus

Photog Suzanne Poli • Thomas Parker Harris • Will St. Leger & Hazel Coonagh • Stephen Ira • Alfie Pettit

Melissa Rivers

The Writer, Producer & Entertainment Correspondent Proves that Doing Good Is Never Out of Fashion

WHAT’S YOUR STORY GOING TO BE? INTRODUCING BIKTARVY® Ask your healthcare provider if BIKTARVY is right for you.

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`` rifampin

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BIKTARVY contains the prescription medicines bictegravir, emtricitabine, and tenofovir alafenamide. It is not known if BIKTARVY is safe and effective in children under 18 years of age.

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What are the possible side effects of BIKTARVY? BIKTARVY may cause serious side effects, including: `` See “What is the most important information I should know about BIKTARVY?” `` Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having any new symptoms after starting your HIV-1 medicine. `` New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys when starting and during treatment with BIKTARVY. Your healthcare provider may tell you to stop taking BIKTARVY if you develop new or worse kidney problems.

What are the possible side effects of BIKTARVY? (continued) `` Too much lactic acid in your blood (lactic acidosis). Too much lactic acid 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. In rare cases, severe liver problems can happen that 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, lightcolored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effects of BIKTARVY are diarrhea (6%), nausea (5%), and headache (5%). These are not all the possible side effects of BIKTARVY. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.

General information about the safe and effective use of BIKTARVY. Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use BIKTARVY for a condition for which it was not prescribed. Do not give BIKTARVY to other people, even if they have the same symptoms you have. It may harm them. This Brief Summary summarizes the most important information about BIKTARVY. If you would like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about BIKTARVY that is written for health professionals. For more information, call 1-800-445-3235 or go to www.BIKTARVY.com. Keep BIKTARVY and all medicines out of reach of children. Issued: February 2018 BIKTARVY, the BIKTARVY Logo, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. © 2018 Gilead Sciences, Inc. All rights reserved. BVYC0004 02/18

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c o n t e n t s May 2018

34 Cover Melissa Rivers Talks with A&U’s Dann Dulin About the Solid Foundation of Community Service Built by Her Parents and Why We Need to Pass the Torch of AIDS Awareness to the Next Generation

Departments

Features 6

Frontdesk

Digital Footprints

NewsBreak

30 Gallery Photographer Suzanne Poli Creates a Stunning Record of LGBT & AIDS Activism

Ruby’s Rap Ruby raps with Thomas Parker Harris

40 All Together Human ACT UP Dublin’s Will St. Leger & Photographer Hazel Coonagh Unite Viewers Against HIV Stigma

Brave New World

Bright Lights, Small City

For the Long Run

Just*in Time

44 Untucked Queen of the Desert: Drag Legend Alfie Pettit Takes an Empowered Stance Living with HIV

Our Story, Our Time

10 After Louie A New Film Explores AIDS Activism & the Gay Generational Divide

48 Survivors of the Crisis Summer 1993, an AIDS-Themed Film, Captures a Child’s View of Life After Loss 29 Poetry cover photo by Sean Black

viewfinder

lifeguide 50

Destination: Cure

Access to Care

The Culture of AIDS

Lifelines

Survival Guide

HIV

TREATMENT

WORKS

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

Living with HIV since 2010.

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

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

A&U Frontdesk

The Beat Goes On

ore than twenty years ago, A&U featured Joan Rivers in a cover story interview, written by Glenn Gaylord. October 1996, to be exact. We were over the moon that we could share with our readers Ms. Rivers’ deep commitment to the AIDS cause. Joan had been in the fight early into the epidemic: “And then in 1982, somebody said, ‘Let’s give a little fund-raiser at Studio One Backlot in Los Angeles.’ Nobody wanted to do it with me. We got such death threats. I performed with armed guards in front of the stage, which was hilarious. They were doing what they were supposed to do, scanning the room the whole time... and I’m in the middle [snaps fingers] doing comedy!” Until her untimely death in 2014, she remained, steadfast in her efforts to raise awareness and funds, so much so that God’s Love We Deliver named its bakery after her to honor Joan’s volunteer and administrative service to the nonprofit. Her daughter, television host, producer and actress Melissa Rivers, was often by her side in these efforts, or sometimes finding her own way to contribute to the cause. In this issue, we feature a cover story interview with Melissa. It’s our first legacy cover, and we are pleased to share it with our readers. In the interview, penned by our intrepid Senior Editor Dann Dulin and lovingly photographed by Senior Editor Sean Black, Melissa shares: “Growing up, AIDS was never hidden from me. It was so prevalent in my parents’ social circle. I remember when it was called ‘gay cancer’ or ‘gay pneumonia.’ It’s always been on my radar. So many people who were close to our family have died. A lot! More than I think we even realized.” This early introduction to fighting for AIDS awareness and the needs of individuals living with HIV/AIDS, combined with her parental role models, made it easy for Melissa to pick up the torch, and also light fires under other causes dear to her heart as well. And now Melissa is helping her son Cooper find his own way to give back

AMERICA’S AIDS MAGAZINE issue 283 vol. 27 no. 5 May 2018 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner

to the community. If we are going to end AIDS, we need this kind of intergenerational continuity, as well as a dialogue between younger and older family members and community members that strengthens what we know about HIV/AIDS. Because without knowing, we cannot act with purpose or intelligence. Many of our features touch on this dialogue (see the work of Suzanne Poli in Gallery by Lester Strong), but three in particular take this dialogue as their subject matter. To discuss a new film, Summer 1993, writer Ren Jender talked with director and cowriter Carla Simón about the loss at the story’s heart: Frida’s mother has died of AIDS-related causes and relatives move the young protagonist from the city to the country. Simón’s own parents died of AIDS-related causes and so the movie is a way to build upon the past, create something new out of the ashes. In Arts Editor Alina Oswald’s article about After Louie, we find out that director and cowriter Vincent Gagliostro has made a film that explores the intergenerational divide among gay men, making sure the story of the early epidemic is told and affirming that AIDS activism is still very much needed. Editor at Large Hank Trout’s interview with Will St. Leger and Hazel Coonagh, who helped to organize an anti-stigma photo exhibit, brings to the fore the need for representations of HIV/AIDS in the here and now. Said St. Leger, “The genesis of the exhibition was...to start a new conversation about HIV in its modern context. Some people still have a...visual narrative of HIV that’s stuck in the 1980s.” The future is in our hands. By bridging the past and the present, we can ensure that our legacy keeps on living—and so do we.

DAVID WAGGONER

Managing Editor: Chael Needle Senior Editors: Dann Dulin, Sean Black Editors at Large: Chip Alfred, Hank Trout Special Projects Editor: Lester Strong Arts Editor: Alina Oswald Poetry Editor: Noah Stetzer Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, T.J. Banks, Larry Buhl, Ruby Comer, George M. Johnson, John Francis Leonard, Candace Y.A. Montague, Connie Rose, David Rosenberg, Corey Saucier, Stevie St. John, Justin B. Terry-Smith, Patricia Nell Warren, Jeannie Wraight, Rob Zukowski Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Tim Courtney, Duane Cramer, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Michael Kerner, Tara Lessard, Tom McGovern, Nancy Perry, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 • Chris Companik, 1957–2012 Nancy Ellegate, 1959–2015 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 122102743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2018 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/ international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 122102743, USA

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A&U Senior Editor Sean Black interviewed Oscar-nominated actress and AIDS advocate Chloë Sevigny [“The Art of Being,” April 2018] and the beautiful photography and down-to-earth interview captured her independent spirit. On her work in the fight against AIDS, she says: “I did this collaboration with Opening Ceremony where we used Robert Mapplethorpe’s images [printed] on T-shirts and all of the proceeds went to his foundation....We hoped to reach younger generations that aren’t as aware of the disease and didn’t grow up in the time that we did....I was hoping to open up a conversation among young people through the power of a T-shirt campaign.”

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In the April 2018 issue, Hank Trout interviewed director Tom E. Brown about his new film, Pushing Dead. “I wanted to make a different kind of AIDS movie, a comedy—in which nobody dies. After all, nobody goes through life without humor. And as a writer, that’s all I do, comedy; I’m not interested in writing humorless drama.” The film stars James Roday and Danny Glover; it is now available to stream or purchase.

Photographed by A&U Arts Editor Alina Oswald to illustrate Rob Zukowski’s March 2018 interview, Will Harrell, aka Candy Samples, has been a steadfast advocate and fundraiser and the love he has shown for our community was certainly returned by readers.

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Sevigny photo by Sean Black; Harrell hoto by Alina Oswald; Pushing Dead photo by Frazer Bradshaw

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@au_americas_aids_magazine A&U • MAY 2018

AFTERLOUIE A Film by Vincent Gagliostro and Starring Alan Cumming Links AIDS Past & Present

oday we live in “a potential radicalizing moment,” artist and activist Avram Finkelstein said in a recent interview, [A&U, January 2018]. We find ourselves at “a critical junction” between two generations—a generation that survived the AIDS crisis and is still here to tell the story, and a younger generation that has a unique opportunity to learn firsthand from these survivors and, thus,

an activist, one of the original members of ACT UP (AIDS Coalition To Unleash Power). After Louie is his first feature movie. The cast and crew include co-writer and actor Anthony Johnston, Tony Award-winning actor Alan Cumming [A&U, January 2004], Zachary Booth, and production designer Avram Finkelstein. Hearing about the film, I decided to attend After Louie’s New York City premiere

as from today’s perspective, when fighting AIDS doesn’t feel like being in a war. After Louie explores today’s intergenerational divide, as well as that intergenerational bridge. After Louie also explores universal feelings and emotions defining human nature—love, loss, rage, hope and hopelessness, our fears and insecurities—fear of change, as well as the ability and necessity to embrace change, fear of ending up (and

continue telling the early history of AIDS. Today, there’s also an intergenerational schism, in particular in the gay community, a schism that might undermine the legacy of the AIDS story and of the first AIDS activists. Many believe that, in order to protect this legacy, we need to build an intergenerational bridge, a way to communicate between the two generations. After Louie, a new film by Vincent Gagliostro, attempts to put down a foundation of that bridge, to ensure that the story of what happened during the early epidemic lives on. Vincent Gagliostro is known for his work on films like How to Survive a Plague and After Silence. He is also an artist and

at Cinema Village. Copies of the first ACT UP action (from March 24, 1987, in New York City) calling for a “Massive AIDS Demonstration” were carefully placed on each seat. After the movie, director Vincent Gagliostro, and a few members of the cast, including Alan Cumming, Zachary Booth, David Drake, and Anthony Johnston, showed up to further discuss the movie and take a few questions from the audience. In the audience, as if to complete that panel of young and veteran artists and activists, was Larry Kramer, who received standing ovations. After Louie approaches AIDS history from two opposite sides—from the perspective of the early years of AIDS, as well

dying) alone—and the challenge of coming to terms with our mortality. After Louie is also a story about friendship, acceptance, and about community. It’s a story about survival, about our purpose in life, and the hope that our legacy will live on. Alan Cumming gives a superb performance playing “a version of” Vincent Gagliostro. Inspired by Gagliostro’s own life, After Louie tells the story of Sam Cooper (Alan Cumming), a fifty-something year old ACT UP activist and artist who finds himself alone, seemingly trapped on one side of the intergenerational divide. While trying to keep the story of the early AIDS epidemic—and the fight—alive, he faces a world without an AIDS crisis to fight,

A&U • MAY 2018

photos courtesy Freestyle Digital Media

by Alina Oswald

with friends (gay and straight) who have moved on with their lives, and a younger gay generation appearing to take for granted everything that his generation had fought so hard to achieve, only a few short decades ago. Haunted by the past and by the memory of a friend, William (David Drake), whom he lost to the AIDS crisis, Sam pours himself into making a film about him, in an effort to keep his memory alive. Or maybe Sam wants to solve “the puzzle” that William talks about in an old “reel.” After all, After Louie begins with William presenting Sam with that puzzle: “Try to make sense of this for me. It’s a puzzle. I leave you with a puzzle.” In a way, the movie, itself, attempts to solve “the puzzle” not only for Sam, but also for many AIDS activists and survivors, as well as for those whom they’ve lost to the epidemic. But it seems that, at least in the After Louie narrative, Sam is the only one still interested in solving that puzzle, telling the

story, keeping the memory alive. And as he becomes consumed by his film project, he also finds himself alone in it, yet again. On the other side of the intergenerational divide there is Braeden (Zachary Booth), a young man with a “memento mori” tattoo, because “we all die eventually.” Braeden is in an open, but loving relationship with Lukas (Anthony Johnston), another young man, who, as it turns out, is living with HIV. As their paths collide, their views in life and on the AIDS epidemic also collide. While Braeden accuses Sam, thirty years his senior, of trying to recapture his youth, Sam explains his reason why: “When I was your age, all my friends were dropping like MAY 2018 • A&U

flies. I went to funerals twice a week. We fought for things that really matter.” Then he accuses Braeden’s generation of not doing anything. The intergenerational divide comes through throughout the movie, and not always in a subtle way. After the movie, the panel explained their decision for not being subtle. “It’s a conscious moment to have all that spelled out,” Anthony Johnston said. Asked if the movie helped him better understand the ACT UP generation, Zackary Booth said, “I honestly don’t think that I can [fully] understand. I hope I’ll never have to understand it.” Johnston reiterated Booth’s response. But along with that intergenerational divide, expressed so powerfully in the movie, comes a sense of mutual acceptance, and understanding. And it all starts with Braeden’s words to Sam: “I don’t take it for granted!” He thanks Sam for what his generation has done. He says “Thank you”

discussion, explaining that he actually knew some of the people whose names he was writing on that wall. “In the wide shot, Vincent [Gagliostro] would shout at me [and sometimes spell out] the names that he knew.” It was not pleasant, but powerful. What got Cumming were the people who didn’t have a name. Instead of a name, he’d write something like “the sexy boy that lost his hair.” He mentioned that nowadays he tries to learn the names of people he meets because, if something like the AIDS epidemic happens again, he’d like to know their names. And there’s more. A few people in the audience recognized some of the names written on that wall during that scene. After Louie is a powerful story about the past, present and future of AIDS, told in an intimate and emotional way. “I wanted to tell the truth,” Gagliostro said, on the panel. “I wanted to create a space for my

Left to right: Alan Cumming as Sam; Zachary Booth as Braeden; Sam and friends (played by Wilson Cruz, Patrick Breen, Sarita Choudhury, and Lucas Caleb Rooney) enjoy Chinese takeout. twice—first, maybe just to get Sam to stop talking, the second time, really meaning the words. The most powerful scene in After Louie, I thought, shows Sam in a moment of total rage and despair that nobody seems to care anymore, using red chalk on white wall to write down the names of people lost to the epidemic. He doesn’t stop writing until the entire wall is full of names. The scene shows the scope and the reach of “this awful disease,” Cumming commented about the making of the writing on the wall scene, during the panel

writers and actors to bring their [stories] into [the movie].” And mentioning the writing on the wall scene in particular, he added, “it’s the first time I’m actually giving these people a proper eulogy.” After Louie is now available everywhere. Find out more at www.afterlouie.com. Learn more about Vincent Gagliostro at www.vincentgagliostro. com. Read more about the first ACT UP action at www.actupny.org/documents/1stFlyer.html. Alina Oswald is Arts Editor of A&U.

NNewsBreak EWSBREAK A Day in the Life of Marlon Bundo When Chronicle Books of San Francisco teamed with Last Week Tonight with John Oliver to bring us A Day in the Life of Marlon Bundo, a children’s picture book that details the story of Marlon, the Bunny of the United States (BOTUS), who meets the bunny of his dreams, it seems that no one was expecting the book to sell much at all. They certainly didn’t expect the book to sell out its entire first printing of 180,000 copies on the very first day of its release on Amazon. That is exactly what happened! According to The Wrap (March 20, 2018), “Unfortunately, we sold out, because we were not anticipating people really buying it,” Oliver said, “but you can buy it. They’re doing a reprint, so you can still buy it. You can buy the second printing. It will take a few weeks.” One-Hundred percent of Last Week Tonight’s proceeds will be donated to The Trevor Project and AIDS United. Written by Jill Twiss and illustrated by E.G. Keller, the book follows a day in the life of the BOTUS as he falls in love with another bunny, Wesley. The two decide to get married. Those hopes are temporarily dashed by the Stink Bug in charge, who informs them that same-sex marriage is illegal. When Marlon, Wesley and their supportive animal community remember that they live in a democracy and realize that they can choose to replace the Stink Bug, they vote him out—and the furry couple are wed surrounded by their family and friends. A Day in the Life of Marlon Bundo explores issues of marriage equality, tolerance, and democracy. Oddly enough, the book was released the day before Marlon Bundo’s A Day in the Life of the Vice President, a very different picture book written by Charlotte Pence, the Vice President’s daughter, and illustrated by his wife, Karen Pence. “Because we wholeheartedly agree with the message of inclusiveness, we leapt at the chance to partner with the hilarious and brave team at Last Week Tonight with John Oliver,” said Sarah Malarkey, Executive Editorial Director at Chronicle Books. Echoing Malarkey’s assessment of the book, Amit Paley, the CEO of The Trevor Project, said, “This book has an important message for all LGBTQ youth: That they are worthy of love and should be proud of who they are….We are so grateful….The funds raised through the sales of this book will help us continue to operate our 24/7 life-saving services for LGBTQ youth.” AIDS United CEO Jesse Milan, Jr., stated “By celebrating Marlon Bundo’s differences, the book’s authors have created a powerful tool for teaching young people the value of diversity.” Some local bookstores are donating their proceeds from the book to The Trevor Project and AIDS United. The book can also be purchased at www.amazon.com as well as www.betterbundobook.com and www.chroniclebooks.com. The audiobook version, read by Jim Parsons, is also available at www.audible.com.

AGE, SURVIVE AND THRIVE

photo courtesy D. Sciarretta

AGE, SURVIVE AND THRIVE, an exhibition showcasing drawings and poems by long-term survivors of HIV/AIDS, will open with a reception on Sunday, May 6, at the Art Saves Lives Gallery, 518 Castro Street in San Francisco. Produced by Bodyscapes Healing Art Workshops (created by Diane Sciarretta), the specific subject matter of AGE, SURVIVE AND THRIVE is the illness itself. All of the artwork in the exhibition was created by long-term survivors of HIV/AIDS to help heal the artists as well as the broader community. The artists featured in this exhibition are members of Honoring Our Experience [A&U, April 2016], a social support group founded by activist Gregg Cassin that is part of the Shanti Project. Honoring Our Experience at BodyHOE has been working with Diane scapes: (left to right) Jesús Guillén, Sciarretta’s Bodyscapes for two years Diane Sciarretta, Harry Breaux, and now, frequently creating art after one Gregg Cassin A&U • MAY 2018

newsbreak of HOE’s Monday afternoon “Meals Heal” gatherings at Project Open Hand. Ms. Sciarretta is an experienced art educator whose core vision and practice consists of making art with people suffering with serious illness, with illness itself as the subject of their art. She developed the Bodyscapes technique from her own experience with serious illness as a method of transforming her students from victims to interpreters, artists whose goal is to find meaning in the experience of coping with serious illness. This exhibition is the culmination of Ms. Sciarretta’s two-year project with HOE. Marcus Oliphant, a HOE member whose pastel drawing titled “Inside Me,” is on the cover of the exhibition’s catalogue, said of his experience, “Bodyscapes is a beautiful and creative platform to express your feelings in a POZitive way. It really gave me inspiration to tap back into my artistic side. Diane guides you through the process of creating your own masterpiece.” The opening reception, free and open to the public from 1:00 to 5:00 p.m. on Sunday, May 6, 2018, complete with sparkling beverages and chocolates, is sponsored by the Art Saves Lives Gallery, which supports San Francisco artists. Owned by Thomasina DeMaio, the gallery is an all-welcoming space where, they insist, “imagination is inspired, and the art is well hung!” Honoring Our Experience Some of the original drawings in the AGE, SURVIVE AND THRIVE exhibition will be offered for sale, member George Kelly at a Bodyalong with reproduction posters and souvenir catalogues. Celebrate the opening of this exhibition with scapes Workshop; his Ode to My Heart is pictured left. the artists! For more information about Dianne Sciarretta’s Bodyscape programs, log on to: www.redandorangehouse.com. For information about the Art Saves Lives Gallery, check out their Facebook page at https://www.facebook.com/sfartslave. —Reporting by Hank Trout

journal photo by Sean Black; Kelly photo courtesy D. Sciarretta

Project + Connect’s The Journal Initiative “Writing in a journal is an intimate and reflective experience. We are looking for people to share their stories who might not otherwise have a platform to be heard,” shares Community Programs Director Adam Odsess-Rubin about the recently launched (March, 2018) Project + Connect The Journal Initiative. Hoping to stir therapeutic experiences, the initiative seeks to collect and ultimately share the stories of people living with HIV and AIDS, anonymously if the writer so chooses, on the Project + Connect website (ProjectandConnect.org) in writing and/or audio recordings. The Journal Initiative, the largest effort so far to collect the handwritten accounts of people living with HIV and AIDS (PLWHA) from around the world, is spearheaded by the New York-based organization, which reduces stigma through innovative storytelling projects, along with supporting those living with HIV and AIDS by partnering with service organizations and connecting individuals with resources. With permission from the journal writers, Project + Connect shares the stories via multimedia performances and public access to the journal archives to educate the public about living with HIV and AIDS. Continuing, Odsess-Rubin adds, “Regardless of race, class, gender identity, or sexual orientation we want the public to understand the lives of people living with HIV and AIDS so we can move closer to living in a society free of stigma and prejudice.” Anyone living with HIV or AIDS is welcome to participate and receive a free thirty-day journal kit in a discreet envelope by mail, which includes a pen, journal, and prepaid return envelope. The content is up to the writer or artist, but Project Director Daniel DeLoma hopes the experience is therapeutic for those living with HIV and AIDS to know their story will be preserved and appreciated. DeLoma says, “The Journal Initiative is open to anyone and everyone living with HIV or AIDS. There is no need to be a writer or an artist. So far, we’ve received journals that have been used to create daily diaries, collections of poetry, sketchbooks, short novels, graphic novels, pieces of art, and record medical reports.” He added, “The journal doesn’t have to be about HIV or AIDS, it only has to be written by someone living with HIV or AIDS. We have received journals that have only mentioned HIV two or three times and some that have not mentioned HIV or AIDS at all.” According to the CDC, over a million Americans are living with a HIV diagnosis and nearly 20,000 have been diagnosed with AIDS. In 2016, the last year with such available data, 39,782 individuals received an HIV diagnosis. Project + Connect makes a special effort to partner with the LGBT, newly diagnosed, underrecognized, and homeless communities. The LGBT community is disproportionately affected with sixty-seven percent of new infections coming from male-to-male contact. According to the National Alliance to End Homelessness, fifty percent of PLWHA are at risk of becoming homeless and a disproportionate percentage of the homeless population are HIV-positive. If you are interested in participating in the Journal Initiative or want more information about Project + Connect The Journal Initiative visit https://www.projectandconnect.org/the-journal-initiative or call or text 917-983-6744. —Reporting by Sean Black MAY 2018 • A&U

PAGE INTENTIONALLY BLANK

by Ruby Comer

Thomas Parker Harris

Ruby illustration by Davidd Batalon; pushup photo by Alexis Hernandez; portrait by Solaiman Fazel

ranayama, Asana, Tadasana, and Down-dog. Nope. I’m not reading from an Indian restaurant menu, nor am I at the animal shelter choosing a breed of dog! This sunny Sunday afternoon, I am in yoga class. I try to get a class or two in every week, but I have to admit that I truly enjoy when the instructor says, “Savasana [shah-vah-sah-nah].” It means “corpse pose” and we do it at the end. I lie flat on my mat and take some quiet moments to allow all the energy just dispelled to penetrate all over my calm being. Yoga balances my mind and body to relieve daily stress! One man who helps keeps me sane in this insane world is Thomas Harris, twenty-eight, a certified yoga instructor who trained in Rishikesh, India, the reputed birthplace of yoga. Several years ago, he was a successful realtor, but feeling unfulfilled, he left the business. Thomas, a Southern California native, is also a personal trainer and a health advocate. A travel enthusiast, he visited thirteen countries last year. I’m so jealous! His favorite city is Bangkok, Thailand. Other joys in Thomas’s life are his nearly twoyear relationship with Jeremy, and his cat, Badru (which is Egyptian for “born on

the full moon”). Sober for five years, Thomas eats a vegan plant-based diet, and his downtime consists of hiking, astrology, and getting serious tatts on his body. For the past several years, Thomas has volunteered for AIDS events and he currently works with people living with HIV in recovery. Shortly after Thomas was born, his Uncle Terry died of AIDS-related causes. Though he never knew him, Thomas was significantly impacted by his death. After class, Thomas and I walk around the corner that’s just off the hip-earthy tourist-trodden Melrose Avenue, and squat on the curb. We kippitz under a hefty shady elm tree. Ruby Comer: Oh Thomas, I have to tell you. I’m reading this wonderful biography! It’s

called Wisecracker, and it’s about the first openly gay star, William Haines. It naturally includes the days of silent films as well as early Hollywood. You would love it. What are you reading? Thomas Parker Harris: Sacred Contracts by Caroline Myss. Oh, one of my all time favorite self-help gurus! For me, she stands with Louise Hay [A&U, April 2010], Wayne Dyer, and Deepak Chopra [A&U, August 2001]. As you might know, Caroline and Louise were soldiers at the very beginning of the AIDS battle. [I stop as a thunderous revved motorcycle streaks by.] Thomas, tell me how your Uncle Terry’s death affected you. Well…because of his death, I was aware of AIDS all my life. Every year my mom [Terry was her older brother] would hang an ornament on our Christmas tree, fastened with a red ribbon. Uncle Terry was in his early thirties when he died. I only met him as a baby, so my memories are only stories from other family members. My uncle identified as bisexual and lived in Los Angeles, but, when his illness progressed, he moved to New York City. He didn’t want to pass away at home. How heartbreaking, Thomas.

MAY 2018 • A&U

and Lesbian Clinic to help with funding for healthcare and services for people living with HIV. Oh, also, I remember one World AIDS Day I participated in activities by the Pacific Ocean. What did your work at Shanti entail? Planning meetings and overseeing things like financial services to HIV clients in need of housing, job search, pantry/ food programs, and connection to mental health services. I also worked at The Gerry House in Santa Ana, which is a treatment center for those who intravenously use drugs, are living with HIV, and/or are in drug court.

Such a loss. It sounds like you have some of his traits. [His bright whites gleam a knowing proud smile, making him look a lot like actor Patrick Wilson.] Even though I was so young when he passed away, its like he’s always been a part of my life. My family is very close. I believe Uncle Terry and I carry each other’s spirit around for lifetimes…and beyond. When he passed away, my family was devastated. He left behind a brother, four sisters, his mom and dad, nieces, and nephews. My lordy…. Then just in 2011, I had a friend die of this disease. Whaaat?! William was having a rough time in recovery from drugs and alcohol and chose to stop taking his HIV medication. He died slowly. By the time he was admitted into the hospital, he had some major opportunistic infections. He was too far gone for the doctors to save him. Friends and I went to the hospital to visit him and it was pretty intense. We had to wear plastic gowns over our clothes, and a mask on our face to prevent passing anything on to him. My god, it sounds like the early days of the epidemic! The sad part about William was, as you well know, there was medication available. [Thomas takes a sip from his can of coco-

nut water.] It was William’s way of committing suicide. My. Thomas, tell about your addiction. I was addicted to drugs for ten years, from thirteen to twenty-three. I used all drugs, Ruby! Meth and heroin were my drugs of choice. Prescription pills, ecstasy, alcohol, hallucinogens, GHB, weed, and cocaine were always a part of the picture for me, but mainly I was a meth addict and got hooked on heroin at seventeen. Drugs were amazing at the beginning. I had so much fun! But in the end, it tore my life…apart. I had nothing by the end of my addiction. I was intravenously using drugs and [Thomas takes a breath] was dying. What made you turn wholly around?! The turning point for me was experiencing jail multiple times, trips to the hospital from overdosing and psychosis, as well as homelessness at the very end. I have been clean and sober now for over five years. My life is so much better! I am passionate about being alive…when before, all I wanted was to escape. Kudos, my friend. Wow. That is a major accomplishment. Tell me about some of the personal work you’ve done with people living with HIV. I have helped many who are in recovery, acting as a mentor as well as their sponsor. This includes outreach calls, meetings, and working the Twelve Steps! And I know you volunteered in Orange County, near your hometown of Laguna…. I volunteered at Shanti Orange County working with AIDS services and participated on panels for the Orange County Gay

Thanks for all your efforts, Thomas. We need more people like you who can turn their life around—and then give life to others. What do you advise for those living with HIV, or anyone else with a chronic disease? Anyone who is positive will greatly benefit from yoga because it helps release stress and it keeps the body and mind healthy. This affects the immune system in a positive way. I have an amazing plantbased nutrition program that helps lessen inflammation, lower cholesterol, manage weight, and help with diabetes. It delivers rich nutrients in the body, and statistically lowers the risk of heart disease. [He pauses.] Changing the way we eat, combined with incorporating movement in the body through yoga, positively affects our physical and mental health in the best way! I like your attitude, fella! I know you are a tattoo aficionado; pick one of your tatts and explain why you had it done. I have fifteen in total and some are traditional Thai and Cambodian tattoos. Those are extremely special to me because they represent spiritual protection and universal blessings. I had two done in Thailand and another done in Siem Reap, Cambodia. I love collecting tattoos when I travel, as they stay with me forever. It’s the best souvenir, Ruby! Namaste your day with Thomas by logging on to: www.thomaspharris.com. Follow Thomas on Instagram @thomasharris7. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com. A&U • MAY 2018

photo by Alexis Hernandez

He’s remembered as a vibrant person, the life of the party, adventurous—and hilarious. He was wild! My uncle was also a talented artist and we still have a lot of his artwork that hang in family members’ homes.

Brian had his HIV under control with medication. But smoking with HIV caused him to have serious health problems, including a stroke, a blood clot in his lungs and surgery on an artery in his neck. Smoking makes living with HIV much worse. You can quit.

CALL 1-800-QUIT-NOW.

#CDCTips

HIV alone didnâ&#x20AC;&#x2122;t cause the clogged artery in my neck. Smoking with HIV did. Brian, age 45, California

Creating Something Perfect

n 2011 there was a documentary released called Craigslist Joe, where the titular everyman, a skinny White guy with curly brown hair and sad, trusting eyes traveled the country and tried to survive for one whole year entirely on the kindness of strangers that he finds on Craigslist. No money—no car—no friends—no plans—just a free simple-service website that promises an active community of random folks trying to connect. The film is a strange, low-budget social experiment that is often uncomfortable to watch. He shuffles from foot to foot, and flushes desperation-red and blanches embarrassment-pale, as he asks perfect strangers “for a place to crash.” But as is with most reality-based documentaries that follow the singular story of an individual that guides the viewer into an unfamiliar world, it is also deeply interesting, specifically peculiar, and (at some points) as heartbreaking and soul-soaring as any of the world’s greatest operas. As Craigslist says goodbye to its personal ads, and I lament the disappearance of one more sexual gray-space, I wonder where those people will go. With the closing of bathhouses across the country, the proliferation of consent conversations, and the obliteration of random, anonymous connections, I think these beautiful places that historically blended dark and light dichotomies will cease to exist. And as the kids these days say: “I find that problematic.” Because though Craigslist Joe is funny and cute and personable (and I want to kiss him....) the people he meets in these liminal spaces are mostly just lonely. Some of us are so lonely. “US Congress just passed HR 1865, “FOSTA”, seeking to subject websites to criminal and civil liability when third parties (users) misuse online personals unlawfully. “Any tool or service can be misused. We

can’t take such risk without jeopardizing all our other services, so we are regretfully taking Craigslist personals offline. Hopefully we can bring them back some day. “To the millions of spouses, partners, and couples who met through craigslist, we wish you every happiness!” —printed on the personals page I once met a man on Craigslist whose eyes were as wide and drowning as the ocean, and whose hair was soft and sun-kissed like corn fields in summer. He was kind and sexy and articulate and butch: half-Black and half-Chinese

and studying to be a doctor. He had a propensity for geek culture, and like me, the ability to laugh at the most inappropriate times. And every once in a while I would get a text from him that would ask me if I was available at a certain time and place. And though I do not know his name, or age, or where he lives, or how many children he has, or why he wants to be a doctor, or what nightmares plague his sleepless nights, little pink bubble hearts would appear around my face like a Japanese cartoon when he texted. And I would reply “Yes.” Or “I can be there by five.” Or because I’m a writer, and would eagerly be thinking of how the jigsaws of our bodies would fit, I would send him sixteen more texts that were curious and delightful ways of saying “I think you are swell.” And because he was not gay, and not male, and not female, and not great at lasting long, and not

comfortable with discussing intimacies, and unclear about his place in the world, and not sure if he would be here in five years; and because he was unhappy with the curve of his hips, and not a writer, and probably married, he would respond with “Cool.” Because he had no words to fit how he felt in the world. But when we were together holding hands between my sheets, we were perfect. We would talk for hours: laughing and giggling and me kissing the curve of his thigh...until he remembered that he had to return to the real world; and had to go back to being whoever he is there. And perhaps that is the silver lining.... As I bid farewell to my finely worded sex ad that asked for exactly what I wanted, and posted pictures of me in my best light, and that made disclosing my HIV status as easy as a click of a button, now we all have to learn to be who we are in the real world. And because some of us are so strange and lovely and perfect and broken and beautiful that we think there is no safe place for us, but the Internet—and without these invisible hidden web spaces that help us break the laws of physics, form, and social constructs, we are forced to go outside. And God knows we all need more sunlight. And in the sunlight, perhaps we can connect. Just connect. Because some of us are so lonely. But in this Brave New World, I dare you to look up from your phone, smile at a stranger, put words to the things you are feeling, and create something perfect. Personal and perfect. Love and Light. Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Nonsense can be found at www.justwords.tumblr.com. A&U • MAY 2018

illustration by Timothy J. Haines

an ode to craigslist’s personals

Bringing hearts together since 1998

HIV+ Owned Since 1998

Forgiveness

the strength in letting go & moving on

to his children. But, talking about forgiveness, I was moved to share something with my brother that I hadn’t before— something that, regardless of years spent on a psychiatrist’s couch I have yet been unable to quite put into words. I told my brother that I had never even come close to forgiving his father the abuse he subjected me to, and I would always be haunted by it until I could. I had never vocalized this sentiment before and it moved me deeply. Afterwards, upon further reflection I was struck by something. Years ago, in Paris, a man had infected me with HIV and, in my understanding, he did so knowingly and repeatedly. In subsequent years, I was able to forgive this man for what he had done to me—for taking his pleasure and putting my health at such risk, perhaps purposely. It was a natural and cathartic experience, one of healing and growth. What’s more, I was able to forgive myself for not taking the proper precautions, for not valuing myself and my health highly enough. Why then, after forgiving this other man, who in his own way abused me, was I not able to forgive the man who raised me in such anger and dysfunction? Again, forgiveness isn’t always about the person who’s mistreated or abused you and your trust. It is, more importantly, what you do for your

own peace of mind. It’s how we heal. So why then can’t I forgive my stepfather? It will make no difference to him, as he passed away years ago, but I feel that it would make a tremendous difference in my life. As I expressed to my brother, the hatred and anger—although I don’t dwell on them—do eat away at me. I’ve been able to push them to the back of my mind, but it’s many a night that that odious man still haunts my dreams. I can’t quite let go of the past. So what can I do, in the present, to forgive and let go? I’ve already recalled the events of my childhood to therapists past and present; maybe it’s time to do so once again. What I need to do differently is talk about an endgame—talk about forgiveness and letting go. It will be a journey and a difficult one at that. I’ll have to take another look at those events of my childhood that I think about the least. Time for a deep breath— it’s time to let go. 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 thirteen years and he is currently at work on his first novel, Fools Rush In. His fiction has been published in the ImageOutWrite literary journal and he writes reviews for Lambda Literary. Follow him on Twitter @JohnFrancisleo2. A&U • MAY 2018

illustration by Timothy J. Haines

ometimes, it’s life’s most trying episodes that bring us closer. My younger brother and his wife of twenty years have recently split up and it really took him by surprise. Their marriage just wasn’t working for her anymore and she needed a change. What was most hurtful was that she stepped right into a relationship with another man, a man neither my family nor her own has a high opinion of, but I haven’t judged her for it. We all need to find our own path and find what makes us happy and I’ve made too many mistakes of my own to sit in judgment. That’s not to say that I don’t support my brother one-hundred percent, however—I can do that without taking sides. As for my brother, it’s been very tough and he still longs for the life he had with his wife and their four children and needs his family’s support at this time more than ever. Now, I’d rather none of this had happened at all, but a wonderful closeness between my brother and me has been one result. It’s not like we didn’t get along previously, but we had quite different and very busy lives, not seeing much of each other—especially since for most of my adult life, I’ve lived far away and seldom visited. Now, back in the city of my birth, I’ve had much more time for my family and I wouldn’t trade that time for the world. Just last week, my brother and I were having one of our serious conversations about how he’s holding up these days. He said of his ex-wife that he forgave her for everything that’s happened and would take her back in a heartbeat. I was struck by, and put into words how important forgiveness can be, not for the other person, but for oneself. My brother and I have different biological fathers, but it was his father who raised me. He was not a good man, he was an abusive alcoholic and I was more often the victim of his wrath than my brother, whom he had always favored. We don’t speak of him often; I don’t like to speak badly of the man who was his father and grandfather

Voice & Dance Lessons

Hank Trout we should remember to celebrate

friends helping friends.

Honoring Our Experience, a social support group for us long-term HIV survivors here in the San Francisco Bay Area [A&U, April 2016], periodically sponsors a Saturday night dance, called REVIVAL. Recently, the group has added a talent show to the festivities—drag performances, poetry readings, etc. When Gregg Cassin, the founder of HOE, asked me to write something new and read it at the REVIVAL in February, I happily agreed. I wanted to write something about my life-long love of dancing. From the age of six until I was in high school, I begged my parents to let me take dance lessons. I wanted to study tap, ballet, modern dance, every kind of dance I had ever seen. Long before I had the word for it, I envisioned myself a “gypsy,” pirouetting from one Broadway chorus line to another. Unfortunately, although he never articulated it in such terms, I am convinced that my father feared that taking dance lessons would make me gay.

Boy oh boy, did I show him! Anyway, the piece I wrote is a five-part meditation on all that dancing has meant to me over the years. “I Just Wanna Dance” ranges from 1959, when I watched, mesmerized, as Martha Graham commanded the stage on The Ed Sullivan Show, to 2018, when the virus has robbed me of the strength and stamina to dance. It ends with a fantasy about “a tall, strong dancing god” who will “dance me to the end of time.” I memorized the piece and prepared to recite it. Unfortunately, the morning of the dance, one of my debilitating back injuries erupted in excruciating pain. I knew that I could not attend the dance and perform. Saddened at breaking my promise to Gregg, I emailed a copy of “IJWD” to my friend and fellow HOE Michael Hampton, and asked if he would be kind enough to read the piece in my absence. He did more than just read for me. Much more. Michael rounded up four other HOEs on the spot—George Kelly, Ernesto Aldana, John Traglia, and Harry Breaux—and each of them read one section of the piece. And it worked beautifully! In fact, when I saw the video of their reading that another HOE posted online, I realized, Yes! This piece was written for five voices! The passion with which all five read my words was both exhilarating and humbling. Their reading eased my pain—I was almost happy that I had missed the dance. *

Having thought about how quickly Michael and the others rose to the occasion, immediately stepping up to help a friend in pain, I’ve come to see their reading as a metaphor for the myriad ways in which all of us who survived the Plague have stepped up for each other. Every longterm HIV survivor whom I know has selflessly expended countless hours in service to other long-term survivors. From the very beginning of the Plague—when our government ignored us, the medical community shunned us, our families ostracized us, and religious leaders condemned us—we have known that it is up to us to take care of each other. We stepped up then, and we continue to do so in ways both great and small. Remembering those selfless acts of kindness that we long-term survivors have rendered each other makes this grumpy old curmudgeon very happy and very grateful. It makes me want to dance! If you would like to read I Just Wanna Dance, please log on to https://www.diverseelders. org/2018/03/13/i-just-wanna-dance. Hank Trout, Editor at Large, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-eight-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter. A&U • MAY 2018

illustration by Timothy J. Haines

riends have brought to my attention that my For the Long Run columns for A&U have all dealt with rather somber subjects—overcoming survivor’s guilt, the straight-washing of the history of the Plague, HIV-accelerated aging, the abuse of LGBT elders, confronting the systemic neglect of unresponsive medical professionals, and of course Tommy, my cancerous appendix. Now, I admit, I rather enjoy my role as A&U’s resident grumpy curmudgeon—I’ve earned that position, thank you very much, by being older than the glaciers and nearly as cold. But jeez! I don’t want to be known as the magazine’s insufferable one-note “Debbie Downer!” What to do? What to do? I could attempt a vaudeville act—a little song, a little dance, a little seltzer down my pants…. Nah, too messy. I could try my hand at jokes—“Two long-term survivors walk into a bar, and…” Nope. I’m not much of a jokester. So, let’s see what else I might— Oh! Wait! “A little song, a little dance….” *

Justin B. Terry-Smith, MPH, has been fighting the good fight since 1999. He’s garnered recognition and awards for his work, but he’s more concerned about looking for new ways to transform society for the better than resting on his laurels. He started up in gay rights and HIV activism in 2005, published an HIV-themed children’s book, I Have A Secret (Creative House Press) in 2011, and created his own award-winning video blog called, “Justin’s HIV Journal”: justinshivjournal. blogspot.com. Presently, he is working toward his doctorate in public health. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at justinterrysmith@gmail.com.

Communication is key when talking about medical issues. In any relationship it is important for people to have an open line of communication. It is even more important because there can be more “moving parts” to a poly relationship (see what I did there? LOL). It is paramount that everyone be on the same page when it comes to discussing medical issues. People who would like to start having a poly relationship should definitely have a discussion about condoms, PrEP, and how else you might protect yourself and your other partners across

similar and different serostatuses. In an October 3, 2008 New York Times article, Alex Williams interviews Ed Vessel, a cognitive neuroscientist who lives in Brooklyn who stated about polyamory, “Toothbrush disputes are the least of it. In the era of safe sex and cellphones, a life that seems to promise boundless sex in fact involves lots of talking. And talking. And talking.” It’s not a free-for-all. It’s not about orgies or about people inviting into bed all who want to have sex with them with their partners. Basically, if you’re interested in an existing polyamorous relationship, ask to see if they are even interested in adding another partner, or being sexually involved with someone else. Even if you are interested in going out on a date with one of the partners, ask. Whatever direction is pursued, those involved should have a talk about medical history. Poly people are not more likely to spread HIV/STIs. I spoke to persons who were in a poly relationship who were HIV-positive and one of their many responses had to deal with persons thinking they “spread” sexually transmitted infections (STIs). However, polyamorists are more likely to play safer than most. They are committed to their partners and know the stakes for everyone involved. A certain level of trust is needed in a strong poly relationsip. Some polyamorist relationships are serodifferent. A lot of the people I spoke with were on PrEP and/or used

a condom. According to a 2015 Journal of Sexual Medicine article by Justin Lehmiller, “Although consensually nonmonogamous (CNM) relationships are presumed to be far riskier for partners’ sexual health compared with monogamous relationships, the disparity between them may be smaller than assumed. A growing body of research finds that many partners who have made monogamy agreements cheat, and when they do, they are less likely to practice safe sex than CNM partners.” Poly relationships can stand the test of time. Ever seen the 2017 movie, Professor Marston and the Wonder Women? The movie is about Dr. William Moulton Marston, the creator of Wonder Woman, and his relationships with his wife Elizabeth Holloway Marston and their partner Olive Byrne. They were in a romantic triad for years and stood against discrimination and bigotry. Dr. Marston died of skin cancer. Olive would die at age eighty-five and Elizabeth at the age of 100. The point is that they stayed together happily for the rest of their days. There is also the story of Bob, Don and Keith, which was published by I’m From Driftwood: The LGBTQ Story Archive. Bob met Don in 1966, and then met Keith five years later in 1971. After being together for forty-six years, Bob and Keith had to say goodbye to Don, but the remaining two are still together. Rejecting HIV stigma and relationship stigma, we define relationships for ourselves and by who we are with. ◊ A&U • MAY 2018

et’s talk about polyamory. Poly means many and amor means love. One could conclude that polyamory is the act of having many loves. Or relationships with multiple, mutually consenting partners. There are many dynamics to polyamory. There could be a triad, where there are three partners that are all mutually romantic or involved with each other, or something called a V formation, where there is one person dating or romantically involved with two other people, but those two other people are not dating or romantically involved with each other. Polyamory can have many designs and formations. I personally know many men and women involved in such relationships who are both HIV-positive and HIV-negative. What I want to do here and now is dispel some myths that stigmatize persons who are polyamorous. After interviewing some polyamorists, I found some of the answers very interesting.

SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN

LONG BEFORE TAKEOFF. Proud Partner of the Elizabeth Taylor AIDS Foundation.

My Face on Billboards

what happens when your hiv advocacy is suddenly thirty-feet high?

nervous. It was one thing to think that my face was in a borough over an hour away, but the fact that it could be in the same borough I live in brought about a new anxiety. That night, a friend sent me a pic of my billboard in the Bronx, while my other friend sent the pic of the one in Brooklyn. When I saw the photo, I immediately knew where the billboard was. Two blocks up and a half-block over, my face on a thirty-foothigh billboard on one of the busiest streets in Brooklyn. It explained all the looks I had been getting recently. It was a moment of fear, joy, and the culmination of all the things I had worked for. I remember when I first signed up to do the campaign, I thought through a lot of different things. What would my friends say? What would other close acquaintances say? What would people with whom I’ve had sexual encounters say, and was I really ready to have all of these conversations? Would being such a public figure living with HIV affect my dating life and social life? There is so much more that goes into this work, all of it very panic-inducing at times. However, I also knew the importance of breaking the cycle in our community. That we need more people who have platforms and the ability to reach a wide market of people speaking out as HIV-positive activists. HIV is still an epidemic for the Black community and it takes more familiar faces to be a part of the cause if we are ever going to see a change in the narrative. Fear though is a very real reaction when you become the face of a campaign. You are literally taking on all the stigma, shaming, and discrimination that could come from people who don’t understand HIV, and continue to hold

it against you. It is a scary thing to see your face so big every day and wonder what people are thinking when they see you in person. You never know what a person is going to ask you once they place your face with the HIV ad, whether they will get a little bit too personal with the questions or if they just appreciate that you are trying to help their community. For me this campaign is more than about getting a paycheck. It’s about more than having the opportunity to do speaking engagements and throw events. It is about taking the power back from a virus that I thought was going to take my life when first diagnosed. I now have the opportunity to help a lot of others, and in turn use my voice to save a lot of lives. HIV Stops with Me, and I truly mean it. George M. Johnson is a journalist and activist. He has written for Entertainment Tonight, Ebony, TheGrio, TeenVogue, NBC News, and several other major publications. He writes the Our Story, Our Time column for A&U. Follow him on Facebook, Twitter, or Instagram @iamgmjohnson. A&U • MAY 2018

photo by Chad Finley

ack in mid-March, I was walking to the train station as I do almost every day and felt like people were looking at me. Granted, I live in New York City so it always seems as if someone is looking at me, but this time it felt different. It felt as if people were trying to figure out who I was, like they had seen my face before but couldn’t quite place it. I brushed it off as just one of those days. Little did I know, my neighborhood would be seeing my face a lot more, and I would have to learn to navigate within my corner of the world. It was during this same week that the NY State Health Department launched its newest “HIV Stops With Me” campaign. It was the first campaign of which I was a part, so I was very excited to know that I would be on promotional videos, cards, and have the ability to do even more HIV work in the community I live in. When I arrived at the event, I met up with several other spokesmodels—all full of excitement as it was the first time we were seeing how our ads and promos turned out. I struck up a conversation with one of the models, who asked, “Did you see your billboard?” Dumbstruck, I responded, “What billboard?” Unbeknownst to me, my billboard had been placed up at a main location in the Bronx. Granted, billboards were a part of the campaign but I was under the impression that the campaign launch would be the event that started the dissemination of information. Either way, I was very excited about the start of the campaign, and the attention it would bring to the cause. The next day I posted a pic of the palm card with my face on it, which did very well on social media. A lot of people were proud of me and that I chose to be a face of the virus with the hopes of helping others. I posted how there was a billboard of me in the Bronx as well when I got another shocking response. A friend from college who lives in New York City said, “There is also a billboard of you in Brooklyn.” Now I’m

y r t

Poetry

e o PI

Untitled, After Rukeyser

lived in the century after the war. I’d go out on the street after events where we stood on the stage one by one and spoke about one another, and on the street, after, I heard—mostly from my elders, though not all— how awful it was to say “after,” but everyone acted like something had ended. It was hard not to be dramatic about it. When my friends lit up in my pocket we would write one another in lists about the war, which was still going on. Some of us were still dying, and we knew and could say why. Some of us were dying but we didn’t know, or couldn’t say. After the war, everything had to do with it, but to say so would have seemed almost rude or outright evil, or sometimes the only right thing. We couldn’t tell whether it would be cruel to feel that we were going more or less insane from meaning nothing had we been alive only a little earlier, and now meaning so much, some of us, to certain men in politely staffed centrally heated offices. Trans people drank. Sometimes our aunts despaired of us. Both kinds of aunt. We ate pills we thought might bring the past back, strip the plastic off, blue pills, and felt terrible guilt at the brevity of certain lists of dead and shame and grief at the prodigious length of certain others, and a terrible debt that should have been love. I lived in the beginning of the century after the war. —Stephen Ira

Stephen Ira’s poetry has appeared in The Spy Kids Review, heART Online, Alien Mouth, and other venues. He is a co-founder and co-editor of Vetch: A Magazine of Trans Poetry and Poetics. He is currently pursuing his MFA in poetry at the Iowa Writers’ Workshop.

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Record of

EMPATHY Photograpaher Suzanne Poli Talks About Documenting the History of LGBT Struggles from Stonewall to AIDS

by Lester Strong

he June 1969 Stonewall riots in New York City’s Greenwich Village…the gay liberation/gay rights marches from 1970 on…the AIDS protests, demonstrations, and marches over the years: Photographer Suzanne Poli (herself a resident of Greenwich Village) has documented a huge swath of lesbian/gay/bisexual/transsexual (LGBT) history over the last five decades, and in so doing has rubbed shoulders with some remarkable people. Poli, a Brooklyn native, moved to an apartment building on Christopher Street in January 1967, while still in high school. “I came from a strict Catholic immigrant family,” she said when interviewed recently, “and I was considered the rebel in our family. Being a freedom fighter has always been my approach to life. I’ve always felt a sense of injustice about things wrong in the world, particularly about the innocent who find themselves mistreated through no fault of their own.” Poli would talk to her father—in Italian—“about all these worldly things and kind of challenge him,” in her own words. “But my mother was always concerned that I was hearing everything and hearing too much. As a result, I learned to keep my thoughts and feelings to myself. I also think it took away my voice. I had a very big voice inside my head, but I learned I should be quiet. My outside voice should be quiet.” It was perhaps this family dynamic that contributed to her love of photography. “I remember in second, third, or fourth grade, I would like to walk in an abandoned building near where we lived and spend time with diverse types of children. At dinner I would create mental pictures and graphic images from my day in the abandoned building. I had an incredible imagination and lived mostly in my head, as perhaps many artists do. I was also the family photographer, even when I was little, right through my college years. So apparently I was interested in documenting things.” At the time she moved to the Village, however, she was more involved with painting. “My apartment was in the front of the building, facing Christopher Street,” she explained.

“It was on the fourth floor, with a northern exposure. I had my easel in the living room in front of a window that had no fire escape, and I painted with my back to that window. I don’t remember looking out the window so much as staring at the canvas on the easel as I painted the images in my mind. I loved the vivid images I carried around with me, and my dreams were always colorful, vivid, full of motion. My painting came from my mind. I think of it as seeing from the inside rather than the outside.” But her life took a different turn one night in June 1969 when she heard a loud racket outside her window. The event would soon be labeled the “Stonewall riots” or “Stonewall rebellion” after the name of the gay bar on Christopher Street at Sheridan Square (two blocks away from her apartment) raided by the police and during which gay men and lesbians for one of the first times in American history put up a fight for their right to congregate in peace. It was a direct precursor to a new gay liberation movement that soon spread not just nationwide but worldwide. A year later the first Christopher Street Liberation Day March (later renamed Heritage of Pride) was held, and Poli photographed it from her apartment window. A new vocation was born. Although not herself a lesbian, Poli felt an immediate empathy for this group of people who could never feel safe in a bar, let alone on the streets, could be arrested for same-sex dancing, could be harassed for holding hands or kissing in public—in other words, were unable to live their lives with any feelings of safety doing many of the things most people could do without thought, without feelings of self-consciousness, without fear of My Balloons (Heritage of Pride march, New retribution. So she York City), circa 1984 or 1985, archival pigset about documentment print, 18 3/4 by 12 1/4 inches ing their cultural activities and especially the political actions they undertook to A&U • MAY 2018

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Clockwise from top: 10 AĂ&#x2018;OS YEARS (ACT UP AIDS die-in protest), 1993, archival pigment print, 16 by 24 inches Mathilde Krim (taken at Fire Island initial fundraiser for amfAR), 1985, archival pigment print, 20 by 16 inches GMHC: Fighting for Our Lives (GMHC contingent marching in New York City Heritage of Pride march), 1985, archival pigment print, 16 by 24 inches

Opposite page: Marsha P. Johnson, 1985, archival pigment print, 24 by 20 inches

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A&U Gallery liberate themselves from the many constraints placed on their lives by an ignorant and often bigoted society and legal system. Then came AIDS. By 1981 when the first whisper of what would become the nightmare avalanche of the AIDS epidemic was heard, Poli had lived in one of America’s premier “gay ghettos” for quite a few years, and was every bit as devastated emotionally by the advent of the disease as her gay friends and neighbors. Poli recalled: “I [and eventually her husband Bruce, whom she married in 1989] lived in the heart of the AIDS crisis throughout the 1980s and 1990s. All night, especially in the summer, people were screaming out their agony in the street. Everyone came to Christopher Street looking for compassion. It was a theater of despair. I saw people feeling abandoned and in terror. It was a social and psychological force impossible to escape. They became my family and my passion, and I responded with my camera.” In 1984 Poli became photo editor of The Fire Island Tide Newspaper. “I visited Cherry Grove and the Fire Island Pines, and there was a pervasive sense of distress and death. Then in 1985, the newspaper covered an AIDS fundraiser featuring the Australian-born performer Peter Allen [who himself died of AIDS in 1992]. It also featured Dr. Mathilde Krim [A&U, December 2001], the great AIDS medical researcher and advocate. Little did I know this was one of the initial events for the creation of The Foundation for AIDS Research [amfAR]. I can still remember standing next to Mathilde, with people all around her, and looking at her as a savior. My work became a record of empathy, and my feelings of intense sadness and fury guided my camera.” Aside from her photography, Poli has been active on the AIDS front in other ways. In 1984, the Polis and other neighbors formed a block association that became heavily involved in commuMAY 2018 • A&U

nity projects and with other community groups, including Manhattan’s Community Board 2, which encompasses Greenwich Village among other parts of the borough. “AIDS, of course, became a major topic,” said Poli during the interview. “It was pervasive and unavoidable.” She and her husband are also friends with and supporters of Brent Nicholson Earle—“a precious and very special individual, a loyal and trusted, wonderful friend,” according to Poli— who is an AIDS activist and created the American Run for the End of AIDS (AREA) in the mid-1980s and produces the annual Out of the Darkness World AIDS Day vigil and ceremony every December 1.

Over the years Poli has photographed in black and white, and in color, almost always with film, little if any in digital format. Interestingly enough for someone who describes herself as “reclusive and shy,” she’s an urban photographer, stating, “I just cannot work in a setting that is only beautiful and has a picket fence. I may love a country setting, but I have to be able to speak for some place that speaks to me and I feel has something I need to say about it. It needs to be a powerful place that I can melt into and put my heart and soul into. Urban settings provide that.” Given that many of her professional images are of marches, protests, and demonstrations, they are understandably dynamic and forceful, conveying moments of high passion and, when appropriate, high spirits. But even her portraits of individuals—for example, transgender rights and AIDS activist Marsha P. Johnson—almost jump off the page, grabbing one’s attention with their forceful dynamism. In her ability to capture within a single photo the emotions and feel of often hours-long tumultuous events, she is truly one of today’s premier documentary photographers. And she has used her empathy and her camera to bring attention to some of the defining issues of our time, thereby providing a gift for all future time. Quite a wonderful legacy. On May 3 Suzanne was honored for her social activism and photography by the Ali Forney Center’s Aqua 2018 New York City Gala, titled “Aqua Party: A Benefit for the Ali Forney Center & the Water Project.” The Ali Forney Center’s focus is helping protect and provide housing for homeless LGBT youth; The Water Project’s focus is helping communities in sub-Saharan Africa secure clean water supplies. For more on Suzanne Poli and her photography, visit her website at suzannepoli.com; her LGBT-related images are also featured on outhistory.org. Lester Strong is A&U’s Special Projects Editor. Visit his blog, blu sunne, by logging on to: blusunne. com. Follow him on Twitter @LesterQStrong1.

MR mighty rivers

Melissa Rivers Is Definitely Her Mother’s Daughter But Also Delivers An Independence And Strength All Her Own by Dann Dulin

Photographed Exclusively for A&U by Sean Black

elissa appears unannounced, gliding into her bright spacious living room. I’ve been chatting with her gregarious publicist when she enters— and then halts. Our eyes lock, Melissa points to me, and proclaims robustly, “Dann with two ‘n’s’!” Immediately disarmed and captured by her beaming spirit, the tone is set for our time together. 34

Arriving earlier at her secluded multi-level Normandy-style home in L.A.’s Pacific Palisades, I find an open gate. CBS crewmembers are breaking down lights and equipment on the curvy, inclined street. They just wrapped a segment with Melissa for CBS Sunday Morning. I enter the well-groomed lawn area, surrounded by lofty bushes, stepping over apparatus and ring the front door bell. It takes several ding-dongs before her

publicist, Howard Bragman appears, lively and friendly. It’s no secret that Melissa’s mother, Joan Rivers [A&U, October 1996], carried the torch from Day One for those living with AIDS, then called GRID (gay-related immune deficiency). Joan, along with Debbie Reynolds (note: this reporter had an interview date set with Debbie just several weeks after her unfortunate demise), Elizabeth Taylor [A&U, February 2003], Shirley MacLaine [A&U, April 2000],

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Rita Moreno [A&U, October 2013], and Robert Guillaume were a handful of entertainers who stepped forward to offer their support. Other celebrities were petrified. In March 1984, Joan hosted a black-tie fundraiser at the wildly popular disco, Studio One, L.A.’s take on New York’s legendary Studio 54. The event raised $45,000 for the newly established APLA (AIDS Project Los Angeles). Melissa, seated on the eggshell-colored tufted sofa opposite me, grabs her recently published book, Joan Rivers Confidential: The Unseen Scrapbooks, Joke Cards, Personal Files, and Photos of a Very Funny Woman Who Kept Everything off of a wood credenza. It is an elaborate collection of her mother’s life and includes impressive photographs, personal mementoes, and magazine covers featuring Joan, all magnificently displayed. Joan Rivers’ fans will go nuts! (Other books by Melissa, Red Carpet Ready: Secrets for Making the Most of Any Moment You’re in the Spotlight and The Book of Joan: Tales of Mirth, Mischief, and Manipulation.) Melissa dons her black non-descript reading glasses and then flips through the large tome, showing me the poster for the 1984 AIDS event at Studio One. “My

parents had death threats…,” reveals Melissa, interrupting herself. She asks if I want anything to drink then calls out to Sabrina, her assistant, to bring coffee for her. “My parents thought we’d all die together. I was going to school with bodyguards!” Nobody knew at the time what caused AIDS. Those inflicted were pariahs. Much of the public believed that merely touching someone with AIDS was an instant death sentence. It was mass hysteria! At another event, attendees paid $1,000 a plate to see Joan and Elizabeth Taylor together. This was the beginning of amfAR. Around this time, Joan posed for a safe sex campaign ad, “Can We Talk?” (Part of Joan’s estate went to AIDS services.) Melissa worked with her mother through the years on charities that included APLA, amfAR, GMHC, PETA, Make A Wish Foundation, Waterkeeper Alliance, Pediatric AIDS Foundation, LA Mission, Lili Clare Foundation, Bogart Foundation, Children Afflicted By AIDS, and God’s Love We Deliver (delivering meals to those who have life-altering diseases), one of Joan’s favorite charities. In 1994 she became a member of its Board of Directors. After Joan’s death, they renamed their bakery The Joan Rivers Bakery. A synopsis from God’s Love We Deliver website is worth quoting at length: “Joan demonstrated deep commitment, compassion and generosity. In 2009, Joan won over $500,000 for God’s Love on the NBC reality competition, Celebrity Apprentice. The final challenge had the contestants putting on a gala, and we remember Joan, getting down on her hands and knees to roll out the red carpet, making sure it was perfect for the event. That’s the kind of woman she was—devoted, hard working, strong and always fighting for what she believed in. Joan volunteered absolutely every Thanksgiving, bringing her daughter Melissa and her grandson Cooper with her. Each year, she delivered holiday meals to our clients, surprising them with jokes and their special feasts, bringing warmth and care and brightening the holiday for so many.” Altruism is in Melissa’s DNA, for she continues her mom’s legacy with God’s Love We Deliver. Melissa is active as well in Guide Dogs for the Blind, Our House Grief Support Center, and Didi Hirsch Mental Health Services (dealing with a variety of issues, including suicide prevention). “I was raised by two incredibly empathetic generous people who never lost sight of how lucky we

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Joan & Melissa photo by Charles Bush

“My parents were firm believers in taking care of those close to us and our communities—without question”

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were,” Melissa, an Ivy League grad, says in a gentle cadence. “My parents were firm believers in taking care of those close to us and our communities—without question—supporting service organizations, like Guide Dogs,” she specifies. “My father had terrible “Growing up, AIDS was vision and was always fearful of going blind.” never hidden from (Her father, Edgar me. It was so prevRosenberg, committed alent in my parents’ suicide in 1987 when his social circle. I redaughter was eighteen years old.) member when it was Melissa crosses her called ‘gay cancer’ legs, resting her coffee or ‘gay pneumonia.’ cup on her thigh. “It was in their makeup to It’s always been on my take care of everybody, radar,” and I was raised in this atmosphere.” Melissa instilled the same values in her sixteen-yearold son Cooper. (Edgar Cooper Endicott is named after his grandfather. His father, John Endicott, a horse-trainer, married Melissa in 1998. They split in 2003.) Last Thanksgiving Melissa and Cooper were scooping holiday meals at the LA Mission, and, since Joan’s death in 2014, Melissa has donated many of Joan’s clothes and personal items for charity auctions. “About a year ago,” asserts Howard, who’s perched on the other end of the sofa from Melissa, with only two largish crimson pillows between them, “she was cleaning out [her mom’s stuff ] and called me. ‘What do we do with this?!’ she said. It was this coat that turned into a rainbow flag, designed by a really famous Broadway designer...” He can’t think of his name. Melissa can’t either. She calls out to Sabrina, who can’t think of the designer as well. Suddenly Melissa eagerly blurts, “William Ivey Long!” Howard continues. “Melissa gave the coat to Family of Quality Council, where they auctioned it off and got a truckload of money. Along with it was this signed picture of Joan. It was beautiful.” Howard leans in. “When you work with the Rivers’, you’re part of their family. It transcends an employer-employee relationship.” Melissa shakes her head in agreement, “It does.” Howard began working with them in 2014.

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The Melissa you see on the tube is the same Melissa you see in person—authentic, gracious, energetic, and compassionate. Growing up in your mother’s shadow, particularly when your mother is Joan Rivers, is daunting. Now that Joan is gone, a sense of peace surrounds her, almost cocooning her with Joan’s spirit. Though an accomplished producer, philanthropist, host, and author, we haven’t seen the best yet from Melissa. Looking homey in her tight, torn jeans and black cutaway top, it looks as though she could have just taken a quick hike around the neighborhood, freshly kissed by a sunny breeze. Her very straight hair is shiny and her impeccable skin glows. Her cutesy coal-black loafer sliders, with a big rose painted on them, are designed by Alessandro Michele. “I’m in a moment of Gucci. Everything Gucci, including shoes,” announces Melissa, cheerily. The epidemic was always a topic of conversation at the Rivers household. “Growing up, AIDS was never hidden from me,” Melissa reflects. “It was so prevalent in my parents’ social circle. I remember when it was called ‘gay cancer’ or ‘gay pneumonia.’ It’s always been on my radar,” she says. “So many people who were close to our family have died. A lot!” She takes a deep inhale. “More than I think we even realized. There were a number of suicides, too.” Deeply embedded in Melissa’s memory are hospital and hospice visits, and watching those she loved die. One of the family’s first losses was Jason Dyl, her mom’s long time hairdresser. In 1992, Alison Gertz [A&U, May 2016], who acquired HIV after having sex the first time, appeared on Joan Rivers’ talk show. Melissa became fast friends with her. “Ali Gertz and her family became a part of our world,” she informs, looking out a window that leads to her private patio deck and swimming pool, where just beyond the tops of the palm trees lies the Pacific Ocean, which is visible. Several months after Alison was on Joan’s show, she died. She was twenty-six. Her death was a jolt and left a deep scar on Melissa. Unlike most of Rivers’ friends, she was savvy about the epidemic. “Sex didn’t scare me…I was educated,” continued on page 54

All Together HUMAN ACT UP Dublin’s Will St. Leger & Photographer Hazel Coonagh Create an Exhibit to Destigmatize HIV by Hank Trout

hen artist Will St. Leger joined the nascent ACT UP Dublin in the late summer of 2016, he did so out of deep-rooted frustration with the failure of the Irish government, state agencies, NGOs (non-government organizations), community institutions, and the public at large to address the growing number of new HIV infections in the country. “The Irish government’s response to this health crisis is falling short,” St. Leger wrote on his blog at the time. The statistics, revealed in a countrywide “HIV in Ireland” survey, were shocking, infuriating: • Twenty-four per cent of survey respondents believed that HIV can be transmitted by kissing; • twenty per cent of eighteen-to-twentyfour-year-old respondents thought HIV can be passed through the sharing of a public toilet seat; • seventeen per cent of people living with HIV said they had felt suicidal in the previous year.

This level of misinformation and the resulting stigma attached to HIV astounded activists. Still, some ninety-eight percent of respondents agreed that “young people should be taught about HIV transmission during secondary school.” St. Leger and ACT UP Dublin got to work. Like its counterparts in the U.S. and other countries, ACT UP Dublin (AUD) realizes, as stated in its August 2016 Mission Statement, that “the HIV epidemic is a political crisis” requiring direct action, including but not limited to fighting corporate greed and the ignorance and shame about HIV and AIDS. AUD promotes sexual freedom and the reproductive rights of all people, and opposes the hostility and discrimination against HIV-positive people, fighting for equitable access to healthcare and services, including a drugs policy that prioritizes health rather than criminalizing people who use drugs. AUD became one of the first partners in the Prevention Access Campaign, stressing the importance of the “U=U” campaign [A&U, October 2017]. In addition,

AUD has pushed for greater affordability and availability of PrEP (pre-exposure prophylaxis) for those who are HIV-negative, a position that St. Leger particularly supports. “My last HIV test was negative,” he said. “I make a point of disclosing my status this way because it’s a more accurate description. I’m recently [single] and when I started dating again I decided that PrEP was right for me. PrEP has freed me from any background anxiety that I sometimes felt before.” As a street artist and activist for many years, including some time as a Greenpeace activist, St. Leger is no stranger to sometimes controversial direct-action ACT UP-style protests. In 2009, he co-founded an LGBTQ group, Equals, which staged a direct action at the entrance of the Dáil (the Irish Parliament) in Dublin. The group demonstrated their discontent with what they saw as the inadequacy of the Civil Partnerships Bill 2009 by chaining themselves to the gates of the building. St. Leger was subsequently arrested by police but, although he was initially charged, he A&U • MAY 2018

Left: Hazel Coonagh:

Coonagh photo by H. Coonagh; St. Leger photo by Nathalie Márquez Courtney

Top: Will St. Leger

was not prosecuted. More recently, St. Leger utilizes his unique talents for what he has called “Artivism.” For instance, he organized “All Together Human,” a one-day-only art exhibit on Irish AIDS Day, June 15, 2017, featuring the work of fifteen artists, including photographer Hazel Coonagh, Jim Fitzpatrick, and MASER. St. Leger said at the time, “I want the show title, ‘All Together Human’ to sum up the theme of this exhibit. Across our social, religious, economic and geographical differences, HIV… affects us as people… altogether human in our weaknesses and strengths, our failures and achievements, our rage and joyfulness. All together, human, in solidarity, defiance and hope.” A silent auction of items in the exhibit netted some 2,000 EUR, allowing St. Leger to move on to his next collaborative venture with AUD. With Samuel Foxton directing, St. Leger produced Love & Suppression, a short documentary film about Robbie and Maurice, an Irish couple who participated in the landmark PARTNER study [A&U, July 2017], and who, according to the filmmakers’ description, are “living proof that a person living with HIV on effective treatment cannot pass on HIV to their sexual partner.” It is a very moving, beautifully produced, very upbeat and inspiring look at how one couple has learned how to live as a sero-different couple without the fear of passing the virus to the negative partner. The film doesn’t MAY 2018 • A&U

eschew the science, but it emphasizes the love and joy that Robbie and Maurice feel, not only for themselves but for all of the hundreds of thousands of couples who will benefit from the knowledge the couple were a part of discovering. The very opposite of “preachy,” this film aims straight for the heart without being treacly. St. Leger told A&U, “I think the film’s strength is the ease that Robbie and Maurice show when talking about sex and their relationship. The fact that they were one of the 888 people that took part in the 2014 PARTNER study meant that the viewer could put a human face on the statistics. “I often say, hearing people talk about studies in human terms is the difference between looking at a map and seeing the territory.” And then, of course, there are times when one need only see, not necessarily hear a piece of art. Photographer Hazel Coonagh took the photos for the All Together Human exhibit. “Will approached me with the idea to do a portrait series to coincide with Irish AIDS Day and an exhibition he was organizing to raise awareness and funds,” Ms.

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Coonagh recently told A&U in an email interview. “The driving force behind this project was the idea of finding a way to have everyone and anyone, everyday people relate to the HIV epidemic happening in Ireland right now.” The portraits are almost startling in their everyday-ness, their familiarity. And why shouldn’t they be familiar to us? “Hazel and I believed that the project should ‘sell’ itself, meaning, when we launched the ‘HUMAN’ project on social media, we published only four example photos of people and then invited members of the public to get in touch to be the subjects of all the remaining shots. The fact that over sixty people responded to our call to partake in an HIV solidarity photo project was uplifting for us.” St. Leger continued, “The genesis of the exhibition was…to start a new conversation about HIV in its modern context. Some people still have a… visual narrative of HIV that’s stuck in the 1980s. We wanted to challenge that and show that people living with HIV are no different from you or me.” “The portraits taken by Hazel are of sixty-three serodifferent people,” he continued, “so the concept was that we should see the human being first. The first word

in the abbreviation ‘HIV’ is ‘Human’ and yet people sometimes don’t see the person, instead they focus on a virus that is invisible to the naked eye.” “We used sixty photos and shot just over that, sixty-three or sixty-four,” Ms. Coonagh said. “The series kept growing as it went. We wanted to keep going with the project but we had a deadline for the exhibition and eventually had to cut off photographing for the show. We shot just about everyone who responded, though we did try to make the shoot as diverse as we could and have a good mix of ages and genders in hopes that as many people as possible could relate to the images.” It is

indeed the very ordinariness of the photographs that gives them their “we’re all in this together” vibe. When asked about future plans for the HUMAN photos project—a traveling exhibit, perhaps? or a photo book?—St. Leger admitted, with no small measure of chagrin, that “to be honest, after the exhibition nothing much happened with the photo project” as he became more and more active with AUD and other projects. St. Leger and photographer Coonagh both would like to see the photo project preserved and shared more widely. “I thought [A&U] would be a great platform to share the photos again,” St. Leger said. “The HUMAN project was the most important and touching project I’ve done thus far in my career and I would love to do more and expand it further. A book would be wonderful!” said Coonagh. “We’re all in this together” is an excellent way of summing up Coonagh’s photographs, Will St. Leger’s art work, and the aims and goals of ACT UP Dublin: We are indeed all in this together. All together human. You can watch Love & Suppression at http://bit. ly/2H1jtvf. You can follow Will St. Leger’s work at https://willstleger.wordpress.com. Information about ACT UP Dublin is available at actupdublin. com. The HIV Ireland blog survey referenced here can be found at: http://bit.ly/2GsUq33. Hank Trout is an A&U Editor at Large.

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UNTUCKED Alan “Alfie” Pettit, aka Arial Trampway, the Inimitable Drag Queen of Palm Springs, Educates Others About the Epidemic From Firsthand Knowledge

by Dann Dulin

was totally bulldozed…by the bodaciously bawdy performance of Arial Trampway at Palm Springs’ Hard Rock Hotel! Her namesake is the desert city’s iconic tourist attraction, the Aerial Tramway. At the top of the show, the curtains part and Arial cruises in swiftly on a motorized hoverboard. She glides gracefully in and out through the eager crowd, flapping huge feathered pink fans in each hand, all the while lipsynching a song. How does she maintain her balance?! This pro has the audience wrapped around her bejeweled pinky finger. Back on stage, Arial showers the crowd with captivating repartee and hilarious blue jokes. Next, Arial, as emcee of the show, DRG BRNCH (Divas of Rock Glam Brunch), introduces the first drag performer. Arial seamlessly maintains the high-energy pace. Midway through the show comes “Pass The Purse,” where she asks the crowd to call out the names of “volunteers,” who will be dressed in drag on stage, and usually it will be a couple of straight guys. When the two men are brought on stage, Arial chats with them, while performers outfit the participants in wild wigs and flashy costumes. The audience roars. Ms. Trampway announces the char-

ity of the day, and sends the guys out in the crowd with big purses. They sashay through the audience collecting money for a new charity each week. Thus far, they have raised over $13,000 for various organizations including Desert AIDS Project (DAP), Hurricane Relief, Angel View, and Coachella Valley Rescue Mission. DRG BRNCH T-shirts sell for $29.95, with proceeds going to DAP. DRG BRNCH premiered February 2017 and was so popular that Hard Rock moved it from their dining area, simply known as “The Kitchen,” to the ballroom upstairs to accommodate more people. Many are led to this extravaganza through a huge promotional billboard of Arial Trampway, located on Rte. 10 just on the outskirts of Palm Springs. The creative man behind Arial is Alan “Alfie” Pettit. This year Arial celebrates her twentieth birthday. Maintaining this persona is a full-time job that Alfie works on tirelessly, as he approaches 10,000 followers on social media. The afternoon I attended the show, the show attracts a very mixed audience, mostly heterosexual—and it was SRO. After the production, Arial and the performers come into the lounge area to sign autographs and snap pictures with fans. In the midst of the bustle, Alfie

whispers in my ear, “This is our last show.” I was dumbfounded. She continues, “I’ll tell you over lunch tomorrow.” The next afternoon I meet Alfie at Eight4Nine, a restaurant in downtown Palm Springs. When I arrive, he’s already seated at a high round table, wildly dressed in colorful hand painted blue jeans, decorated hitop Converses, a black DRG BRNCH T-shirt (spelled out in pink letters), and topped off with a black cap, “DIVA” inscribed in faux sparkling diamonds. The Diva blends nicely into the chic décor and friendly ambiance of the eatery. Alfie tells me that the restaurant is built on the historic site where the first Palm Springs post office once stood. He takes pride in his city. “I enjoy its history, mid-century architecture, the mountains, the windmills, and the sacred Native American land that adds an overall magic,” he says with conviction. After we order drinks, Alfie confides that he was fired by Hard Rock because the owner

A&U • MAY 2018

photo by Luis Gavela

apparently didn’t want to “turn his hotel into a gay venue.” The news is still raw and hurtful, and Alfie is plainly in shock. A waiter appears and we order. Several women enter, espy Alfie, and come by for hugs. Alfie introduces everyone, then briefly chats about the Palm Springs AIDS Walk he participated in yesterday. Alfie acquired HIV at age nineteen, but more on that later. Born in 1969, Alan Pettit’s love for drag grew out of the eager attention his mother and sister gave him as a kid growing up on his grandfather’s dairy farm in Ridgefield, Washington. When Alfie was seven, the family moved to Vancouver, Washington. Still married to Alan’s father for nearly fifty years, his mom, with whom he has a symbiotic relationship, would outfit him in frocks, heels and wigs, and apply makeup. “At seven, for Halloween,” giggles Alfie, “mom dressed me up as Shirley Temple and I came back Dolly Parton!” He pauses to nibble on a shrimp from his ahi tuna poke entrée, and concludes, “Arial Trampway was heavily influenced by my mother—classy but trampy.” (Another inspiration was the incomparable Divine.)

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Coming from a home that was riddled with abuse and infidelity, Alfie began using drugs at thirteen. “I was in constant trouble with school, both due to my drug use and a lack of parental discipline,” he says. The teenager was placed in different schools and eventually was suspended until he completed a thirty-day drug treatment program. Alfie would be in and out of rehab many times in the coming years. At fifteen Alfie ran away from home, and began prostituting himself. In 1989, at age nineteen, an ex-boyfriend, Daren, who had tested positive for HIV, contacted him. “Me being the only person [Daren] had been with, it was clear to me that I was HIV-positive, too,” he offhandedly recounts, sipping a cold brew. At the time Alfie was a waiter at Red Lobster. “Because of my new-

found status, I took time off from work. When I tried to return, Red Lobster (owned by General Mills at the time) offered me money not to return to work. They wanted to pay me to stay home!” He quickly adjusts his cap then twists his body a tad sideways crossing his legs. “I hired a lawyer and came to an agreement for a lump sum, for-life weekly checks, and made a verbal agreement that when the time came that I needed it, they would insure me.”

ting a spin on one of his songs, “Don’t follow me no more.” Alfie had his own system, but simply put, he would show up at events, luncheons, benefits, preems, hotels, and film sets. He followed Jack Nicholson into a private golf club, where Jack blurted, “You know and I know that you’re not supposed to Cher and Alfie be in here.” He then agreed to sign a few pictures. Alfie got on the set of Don Juan DeMarco and approached Marlon Brando. His quick retort was, “Go fuck yourself.” For Elizabeth Taylor [A&U, February 2003], he nabbed her at the filming of The Tonight Show with Johnny Carson. Alfie slipped through security and landed backstage, eventually spotting her. Alfie asked, “Miss Taylor, can I please have an autograph?” The legendary star signed. The demands of Alfie’s rising business caused another drug relapse. Ironically, this is when Arial Trampway was created. In 1998, Alfie and a bunch of his friends

drove down to Palm Springs to attend the White Party. For the first time, Alfie hired a professional makeup artist—and voilà, Arial was born! In the early 2000s, Alfie began to experience extreme fatigue and was treated with an anti-HIV cocktail that inevitably made his condition worse. He was finally diagnosed with MAC (Mycobacterium avium complex). Downtrodden, Alfie moved back to Washington to be with his family. “I believed that these were my last moments…,” he laments, offering that he sold his home in West Hollywood and closed Alfie’s Autographs of Hollywood. (Of autographs Alfie obtained, he treasures Dean Martin’s the most, which the star signed to Alfie’s mom.) In and out of hospitals, Alfie underwent several simultaneous antibiotic treatments that caused permanent damage to his body. “Since these were my last days,” he says, “I said ‘fuck it’ and bought a car, a A&U • MAY 2018

car photo by James A. Cesena; Cher photo courtesy A. Pettit

When the Red Cross confirmed Alfie’s HIV-positive status they told him, “You probably will only live around two years.” He went into a devastating tailspin of drug use once again. Eventually, the mother of one of his boyfriends saved him. “She said to me, ‘This doesn’t have to be a death sentence, Alfie,’ and she guided me through health and wellness to sobriety, clean eating, and herbs.” With his new lifestyle, he decided to speak with school kids and people living with HIV in various venues. The money he acquired from public speaking enabled him to move to Los Angeles, California. In 1992, Alfie established a popular business in L.A., Alfie’s Autographs of Hollywood. A Los Angeles Times reporter ran a story about Alfie and his company on the front page. They coined the then-twenty-five year old, “Paparazzi with a Pen,” as he would obtain photographs signed by the celebrity—in person! The newspaper exposure sent his business soaring, which led Alfie to appear on several national television programs. His unique approach to getting autographs heightened business. Alfie was sneaky and snoopy, probably giving new meaning to the word, “stalking.” At Tom Petty’s home, Petty signed his photograph, put-

photo by James A. Cesena

boat, and a lakehouse.” He lived life to the fullest, even going about town connected to his IV and walking on painful feet. Alfie and I peruse the dessert menu. Alfie trumpets, “Hell, let’s go all out.” We split two dishes, the Chocolate S’mores Fondue and the Cardamom Candied Apple Crème Brulee. In 2002 with improving health, Alfie moved to Thailand. To raise money for charity, he donned Arial and took to the stage. Proceeds from one event went to those who could not afford HIV medications. Alfie also began buying properties and needed more revenue to support his real estate investments. What would he do? One night at a club, a gentleman paid Arial to be a dominatrix. “The idea was quickly born,” thunders Alfie, waving his arms in the air as if performing a magic act. “Arial discovered she had hidden talents, which took her on a whirlwind tour!” Alfie had a friend who was a transvestite dominatrix and they decided to travel together. “My first weekend in New York City I made over $5,000,” reminisces Alfie amid relived exhilaration. In 2008, while working in Washington, D.C., Alfie experienced intense stomach pain, after returning to the hotel. “I was rushed in an ambulance to the hospital…in full drag,” he playfully points out. “I was admitted into emergency surgery for an air bubble in my abdomen, caused by a burst tumor in my small intestine. I had high-grade non-Hodgkin’s lymphoma.” Fortunately the cancer has never returned. After this health scare, Alfie did some somber soul searching. He decided to return stateside and sell his properties in Thailand. It was 2010, and after years of a lingering love affair with Palm Springs, he settled there. “I wanted to maintain a more spiritual lifestyle, in contrast to the hedonistic way I was living in Thailand,” he informs. “I yearned for a peaceful community where I could regain full health and drug recovery.” On 11/11/11, Alfie said farewell to drugs, and he’s been clean ever since. “I’ve dabbled in everything that didn’t involve a needle,” he confesses. Alfie momentarily glances out the window that peers onto Palm Canyon Drive. “When I was clubbing, it would be Ecstasy. Meth probably hit me the hardest. It dropped me into a state of psychosis and led to an arrest,” he says straightforwardly. “This last time I was just tired of waking up and medicating, MAY 2018 • A&U

staying that way throughout the day, then doing it all over again the next day. I wanted a different lifestyle…. ” He trails off. Alcoholics Anonymous got Alfie sober, and it taught him to be of service to others. “It’s built into every part of the program,” he explains. “I’ve had a very blessed life, and now I’m in a position to be able to give back.” He eyes me directly with his baby blues and flashes a knowing arched brow. “I have always had a zest for life and tried to live it to its fullest. Mom has played a major role in my life—still does—and it’s really helped to see me through some of the rougher spots. When you’ve been so close to death so many times, it changes your perspective on life.” “Louise Hay’s [A&U, April 2010] book, You Can Heal Your Life, changed… my…life,”

In 2016, Arial received her well-deserved sidewalk plaque on Palm Spring’s Walk of Stars. Alfie now lives a balanced life, taking his meds, vitamins, and Chinese herbs. He even quit smoking. One of his colossal joys in life is his pug, Petunia. “Animals ground me, and have a way of drawing out the negative energy.” Checking in with Alfie several months after our meeting, I learn that with the lawsuit against the Hard Rock Hotel heating up, he put his condo up for sale to pay for the attorney fees. (Since this interview, Alfie had filed a lawsuit against Hard Rock Hotel Licensing, Inc. of Orlando Florida and, as we go to press, the case has been resolved.)

Sassy Ross and Arial asserts Alfie, in a stern tone. “I gained a better perspective on many fronts, including how I view money and people. Abundance is unlimited, but there’s a respect and responsibility that comes with abundance. Money flows to me, through me, and is released unto the universe.” Currently, Arial appears around Palm Springs at fundraisers and events, raising money for Desert AIDS Project, the LGBT Community Center of the Desert, and Sober in the Sun. The charismatic lady also serves as an honorary chairperson for the American Cancer Society. “Most of the queens who live here are involved with local charities,” he states with pinpoint exactness. “It’s a place of pride for all of us.”

“Initially, when this whole mess happened, I was embarrassed and confused…,” confides Alfie about the litigation, offering that he’s also auditioning for RuPaul’s Drag Race. “There is no place in Palm Springs for discrimination—nor anywhere!” he exclaims fervently. “Everyone has a place in this world.” Alfie takes a beat. “I wouldn’t change a thing about my life!” he radiates. “Every situation has led me here. I can’t think of anything bad that’s happened in the past that hasn’t led to something …beautiful.” Follow Alfie on Facebook: https://www.facebook. com/ArialTrampway. Dann Dulin is an A&U Senior Editor.

Survivors of the Crisis Carla Simón Takes Viewers Back to Summer 1993 by Ren Jender

Ren Jender: Congratulations on the film! The little girls who star just seem like kids living their lives on camera. Do you have tips for working with children? Carla Simón: It was important to find children like the characters. They could be themselves playing the scenes I wrote. If I want the audience to believe what the kids are doing, they have to believe it, so we created a fictional world around them that felt real. We worked with the adults recreating moments that happened before summer 1993, up until Frida’s mom died and the aunt and uncle tell her she’s going to live with them. Then we spent two weeks going through the scenes in the script, so the kids knew what we were going to do. We didn’t talk about death. It was more about creating the right relationships.

You teach children [as part of Cinema en Curs in Barcelona] and help them make their own films. Is there a difference between teaching kids and directing kids? It’s very different. When I direct them, I’m like, “We’re working and the work is a game—with rules.” When I teach it’s more about a space for them to be creative.

Frida, the main character, has lost her mother at the beginning. You also lost your mother at that age and you interviewed your own family as research. Did you find out anything that surprised you? I found things I didn’t remember. Most of the scenes in the film are fiction. They evolved from something real, but, like, I never hid my sister in the woods! The last scene, my mom told me, “There was this time you were jumping on the bed and suddenly you started crying.” I thought it would make a good ending. The thing I discovered was I didn’t remember my biological mother. Then I made a short film with her letters and I went to the places where she wrote them, to recover those memories.

Frida is a more complex character than we’re used to seeing children play. She’s cute and likes to have fun, but she’s also maddening. Did you look to other films to create that character? Two Spanish films: Cría Cuervos by Carlos Saura and The Spirit of the Beehive by Víctor Erice; Ponette, a French film by Jacques Doillon; and also a film called

Frida (Laia Artigas), her new sister, Anna (Paula Robles) and their grandmother (Isabel Rocatti) L’Enfance Nue by Pialat. The fact that children cannot put their feelings into words is fascinating. They find other ways to express them. A lot of what we find out about the character and her family we overhear from adult conversation. Do you remember when you found out your mother died of AIDS? I didn’t find out until I was twelve. So I thought if the film is told from the girl’s perspective I cannot put the word “AIDS” in it. We found ways to inform the audience without it. AIDS still has some stigma. I didn’t want to make “A A&U • MAY 2018

photo courtesy Oscilloscope laboratories

hy aren’t you crying,” another child asks Frida (Laia Artigas), the six-year-old main character of director Carla Simón’s debut, Summer 1993 (which Simón cowrote). Frida’s mother has died and inside her Barcelona apartment Frida’s relatives pack her things so she can move to rural Catalonia with her aunt, uncle, and younger cousin, Anna. But outside on the street, under nighttime fireworks, she plays with city friends one last time. The rest of the summer we see through Frida’s eyes. Only as the audience pieces together conversation and actions do we understand that Frida’s mother died of AIDS-related causes. But the film isn’t maudlin and has a clear-eyed view of Frida, who is spoiled and sometimes callous (she leaves Anna alone in the woods) The film doesn’t villainize any of its characters, even as Frida’s aunt finds raising the girl a challenge. Parts of the film are based on Simón’s life: Both of her parents died of AIDS-related causes when she was young. Summer 1993 opens on May 25 in New York City, Los Angeles, and D.C., with a national rollout to follow. A&U Skyped with Simón in April. This interview was edited for concision and clarity.

Carla Simón Film about AIDS.” The disease cut a huge swathe through Spain and a many people there have a similar story to Frida’s.

photo by Agusti Argelich

When did you start disclosing that your parents died of AIDS? At first, it was hard, because I had an image of my parents and then I discovered I didn’t know them. My adopted mom said, “You may wonder how they became infected.” It was probably through drugs because of the wild, party atmosphere in [post-Franco] Spain. My mom took me to the doctor who told me everything about AIDS. It took me months or maybe a year to tell others: first new people, then my friends who weren’t new. No one reacted badly. We learn about Frida’s mother when Frida and Anna play together and Frida is “the mother.” Did you have to edit a lot of footage to get that scene? The way we did it was: I played the mom during rehearsals. And when we got to the set we had Laia imitate me, pretending she had a cigarette. What she said was my mom’s old-fashioned way of talking that I read in her letters. Both girls knew the rules of the game, but when the little one pretends they are in a restaurant, that part was different in every take. I kept waiting for Marga, the aunt who becomes MAY 2018 • A&U

the mother, to lose her temper and do something terrible, which she never does. In these scenes and the scene where Anna is lost in the woods the film has the tension of a thriller. Were you influenced as a filmmaker by thrillers? No, I haven’t watched many. Writing the

Lola, Frida’s favorite aunt is played by an actress of short stature, Montse Sanz, but her height isn’t mentioned. Was the part written for someone of short stature? Yes, because my aunt was like that. No one in my family made a big deal about it In 2017, Catalonia tried to secede from Spain. Did that have an effect on making the film? We shot in the summer of 2016 and not that much had happened at that point. It’s been strange because we were a Catalonian film representing Spain at the Oscars [Spain put forward Summer 1993 as its countrywide nominee for the 2018 Best Foreign Language Film Oscar but it didn’t make the final list of nominees]. It was ironic, but beautiful at the same time. Can you talk about how having parents who died of AIDS influenced you as a filmmaker and as a person? The qualities you need as a filmmaker, to be persistent, stubborn and have the ability to adapt, I have because of what happened to my parents.

script I remember thinking, “Is it a film about a kid coping with the death of her mom or is it a film about a kid trying to adapt into a new family?” It wasn’t until the editing process that I realized we could play with that tension.

Ren Jender (@renjender on Twitter) is a queer writer-performer/producer making a film, whose writing has appeared in Slate, The Village Voice, INTO, and the late, lamented The Toast.

Fast Look

he Conference on Retroviruses and Opportunistic Infections (CROI) provides an annual snapshot of the year’s most interesting and progressive data on HIV cure and remission research. Here’s a quick run down of some of the highlights presented at this year’s conference. Kick and Kill “Kick and kill” is a strategy that proposes to wake up or activate and then eliminate cells that are latently infected with HIV. Active replication allows the immune system to recognize these cells as a danger, making them a target for therapeutic agents. Researchers evaluated in Rhesus monkeys the combination of GS-9620, a TLR antagonist used to activate latent cells, and PGR121, a broadly neutralizing antibody, to kill off the awakened cells. The monkeys had been virally suppressed for two years. ARVs were discontinued before beginning the dual therapy. Viral suppression was maintained for over three months with this combination. At least half the monkeys remained suppressed at six months. In some cases, the virus remerged but the monkeys’ immune systems were able to re-suppress the virus without the need for additional doses. Additionally, researchers found that, even after viral rebound, the virus was at a lower level (viral setpoint) than it had originally been before the monkeys were given the combo, and the monkeys had lower viral DNA levels in their lymph nodes. This study suggests that the duo may have depleted viral reservoirs and allowed for some level of immune control of the virus. More Validation of U=U A study relevant to our understanding of viral reservoirs set out to determine if HIV replication occurs in lymph nodes in the presence of viral suppression. Its results are also important to our understanding of the U=U (undetectable equals untransmissable) premise. It has been conclusively established that when a person is undetectable and on sustained treatment for at least six months, he or she can’t transmit HIV to someone

else. However, there remains a question as to whether HIV replication occurs elsewhere in the body, such as the lymph nodes, despite it not occurring in the blood, or if ongoing replication in a virally suppressed person stemmed solely from activated latent HIV in viral reservoirs. In this study, Dr. Mary Kearney of NIH’s National Cancer Institute found no evidence of ongoing HIV replication in the lymph node. This study contradicts a previous study published in 2016 that found that HIV replicates in the lymph nodes, helping to replenish viral reservoirs.

CD32+ as a Biomarker? A major barrier to curing HIV is determining which cells harbor latent HIV. Biomarkers are needed to distinguish latently infected cells from cells not harboring the virus. CD32+ was recently suggested as a biomarker to differentiate the two in CD4 cells. Several studies evaluated this hypothesis and determined CD32+ did not identify latently infected reservoir cells. Studies continue to evaluate other surface markers that can be used as biomarkers, allowing researchers to target these cells. Early ART in Infants The “Mississippi baby” first made us aware that very early treatment with ARVs in infants could produce viral suppression for prolonged periods of time. Several studies were conducted to explore the effects of early initiation of ARVs in infants, two of which were reported at CROI 2018. Both studies found that beginning ARVs shortly after birth was safe, feasible and lead to smaller viral reservoirs. The first study was conducted in Thai-

land and compared babies aged four to twenty-three weeks who received uninterrupted triple prophylactic ARV therapy since birth and those who did not receive uninterrupted prophylactic ARV therapy. The study also examined virally suppressed babies, with a median age of 2.7 years, who had initiated prophylactic ARV therapy at or after birth. Evaluating markers of HIV persistence, researchers found the infants who received continuous therapy had significantly lower viral loads and lower levels of integrated DNA, than those who didn’t receive continuous therapy. Also lower were the frequency of latently infected cells and the frequencies of cells producing msRNA spontaneously and after stimulation. In the older babies, after ART initiation, those who had started ARVs at birth had significantly lower total and integrated HIV DNA than children starting treatment later and the size of the inducible reservoir correlated with the age at which they began continuous therapy. In the second study, infants in Botswana were given antiretroviral therapy before the age of seven days old. They were compared to children who started therapy later. Researchers set out to measure immune responses and discover if early treatment limits the size of viral reservoirs and measure immune responses. They found that those treated within seven days had lower viral reservoirs both at the beginning of the study and after eighty-four weeks. Five of the six children who initiated therapy with the first week of life had a negative qualitative HIV DNA PCR and a negative HIV ELISA test after eighty-six weeks. 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 2018

illustration by Timothy J. Haines

cure research highlights from the CROI 2018 conference

In Denial

insurance companies discriminate against PrEP users

illustration by Timothy J. Haines

n 2016, Rob, a digital media professional in his fifties, went to Mutual of Omaha to purchase long-term care coverage. He was healthy and so was his husband, and both were HIV-negative. But one issue was a non-starter for coverage, they learned later: They were both using Truvada to prevent HIV transmission. Truvada, manufactured by Gilead, is the brand name of PrEP (pre-exposure prophylaxis) and rated as effective by the Centers for Disease Control and Prevention for preventing HIV transmission. The denial letter was very specific, saying, “based solely on the information provided, we are not able to offer coverage. This is due to daily use of Truvada for HIV prevention.” “We were astounded,” Rob told A&U. They appealed twice, and were still denied. Then they went to Lincoln Financial, hoping for a better result. “We talked to a product manager who sent us to underwriting, and underwriting said there shouldn’t be a problem,” Rob said. But they were still denied. Finally they went to New York Life, working with a health insurance broker, to get an annuity program, which is similar to typical long-term care plans, except that the premium is paid up-front. The third company was the charm. Rob and his husband went on PrEP to be sure they were protected in case they opened up their relationship. And long-term care coverage, according to Rob, seemed prudent. He underscored the absurdity of the companies’ risk management strategies. A couple being denied insurance for using a drug that’s up to 99 percent effective in preventing transmission of a virus is like having car insurance cancelled for wearing seat belts. “We should be ideal customers. It was the first time in my life I felt actively discriminated against. If we never took PrEP, and had HIV and were unaware of it, we probably would have been easily covered. You’d think that situation would be a bigger financial risk for the company.” Rob’s insurance broker, Aaron Baldwin, agrees. Baldwin, who worked at New York Life for five years, said that insurance MAY 2018 • A&U

companies are not technically discriminating against gay men when they deny policies based on PrEP usage. It’s that, typically, underwriting doesn’t understand what PrEP actually does. “HIV drugs sit on a list of prescriptions which lead to an automatic denial for long-term care and disability,” Baldwin said. “When Truvada was approved to prevent HIV transmission, nobody went to the insurance industry and told them that Truvada was multi-use.” And nobody told them to code Truvada differently than, say, HIV treatments. Baldwin went back to his former colleagues at New York Life and informed them on what Truvada does and why it shouldn’t lead to an automatic decline or even reduce a customer’s rating. And he showed underwriting why his customers were an excellent prospect. Unfortunately, there aren’t enough experts like Baldwin willing to do this. “Insurance companies just don’t understand, and they won’t do the deep dive to make good decisions unless someone holds their hands and walks them though it,” Baldwin said. There is a limited, though growing, number of life insurance companies that offer insurance policies for people being treated for HIV/AIDS. There are no figures on how many of the nearly 800 U.S. insurance companies have denied coverage for life, disability, or long-term care to men or women on PrEP, however. But based on Baldwin’s experience with “hand holding” underwriters, it can be assumed that most of them will automatically deny coverage for those who use it. “We have heard about the problem for

a while and even though I have only seen one or two denial letters, I suspect it is fairly widespread because people are not reporting it,” said Courtney Mulhern-Pearson, senior director of strategy and policy for San Francisco AIDS Foundation. Mulhern-Pearson said the California Department of Insurance told her they had not received any complaints about denial of coverage and were not able to quantify the problem. “We encourage people who have received a denial to file a complaint with their state’s department of insurance. We need to get numbers on this,” Mulhern-Pearson said. She added that she does not recommend going off PrEP or paying for it out of pocket to avoid detection when applying for coverage. After The New York Times published a story featuring Dr. Philip J. Cheng, a gay doctor denied disability insurance due to his PrEP use, New York state financial regulators opened an investigation in February. California quickly followed suit, and its Insurance Commissioner wants anyone in the state to come forward if they feel they’ve been denied insurance based on PrEP use. Larry Buhl is a multimedia journalist, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl.

E R U CULT S THE

AID OF

BOOKS

The Great Believers by Rebecca Makkai Viking

o often in both fiction and non we are given a perspective on the AIDS pandemic as it affected the cities of New York and San Francisco. The Great Believers, by Rebecca Makkai, gives a perspective on the crisis in another major city, the city of Chicago. Not only does it give us a story of a city and a group of friends and family in the mid-eighties, at the height of AIDS, it tells a story of one of that group, Fiona, who has carried her loss into her present-day life as she deals with her search for her estranged daughter. Fiona loses a brother and many of her friends in the mid-eighties to the scourge of AIDS. Also dealing with these losses, and a breakup and his own eventual diagnosis, is Yale, a best friend of Fiona’s brother Nico. Makkai captures this time vividly and with much emotion. She engagingly brings to life a large extended family of young gay men who rely on each other for support Their lives and losses are documented with warmth. Many of these men have been rejected by their traditional families and carry that loss with them as they deal with disease and death. Also vividly wrought is Fiona’s emotional journey to Paris to find her estranged adult daughter and granddaughter, whom she has spotted in a photograph by chance. It’s an ancillary narrative told in Makkai’s emotional prose and we see just how those early losses compel Fiona in her present search. The Great Believers is a rich and satisfying narrative of two distinct points in its characters’ lives. Many of Fiona’s friends don’t make

it—they are lost in time—but they are always with her and with the reader. Rich in characters as full of life as any lost or still hanging on, this is a novel of great feeling and clarity. —John Francis Leonard

and experiments with living on her own that quickly turn sour). An abusive relationship with a man and, later, enforced sex work keeps her mind, body and spirit hostage. Substance use dulls her sense of agency and prevents her from raising her children independently. Though her self-esteem is chipped away, Joyce always finds comfort and support in her family. Ultimately, she finds a renewed sense of hope and direction for her life when God answers her prayers. She is one day led, propelled unconsciously to a mass, awakened by the pastor’s call: “It was like the Invasion of the Body Snatchers but better. I had no recollection of walking to the altar, but I found myself there, kneeling on my bloodied knees in an act of surrender. And while at the altar, something changed. I declared that my life was not my own; I needed a savior, and I accepted Jesus, the Son of God, to come into my life and be my personal savior.” And then, in church, she was encouraged to share her artwork and her story of acquiring HIV. With her “amazing

Between the Pages: Where Trials Become Triumph! by Thaïs Sherell J. N-Spired Productions

y stepmother used to tell me stories about Jesus, but they were not your ordinary parables. They were set in dark forests more suited to Hansel and Gretel than the hot, sunny settings of the Bible. They featured ragamuffin children, rather than wise men in tunics. Clearly these were hybrid folk tales that linked my stepmother’s Italian roots with Christianity. And I was reminded of these syncretic fables when I read Between the Pages: Where Trials Become Triumph!, the story of Joyce A. McDonald as told by Thaïs Sherell J., because both re-energize lessons about faith by attuning them to the needs of the listener, or reader, in this case. In clear and sterling prose, Between the Pages follows Brookyln-based artist and HIV advocate Joyce A. McDonald from a childhood, made joyful by her mother and father and made hurtful by colorism and a neighbor’s molestation of her at a tender age, to a young adulthood with its ups (forming a girl group and winning acclaim) and its downs (skipping school; an arrest that no one can see is a mistake, and it is;

testimony,” she had found her purpose. The book becomes just one more way that Joyce A. McDonald can testify. As a portrait of risk, in an environment whose edges are made sharp by racial and gender oppression, Between the Pages is a clarion call for women everywhere to name the wolves that chase them and start the healing by turning prey into pray. —Chael Needle John Francis Leonard writes the Bright Lights, Small City column for A&U. Chael Needle is Managing Editor of A&U. Follow him on Twitter @ChaelNeedle. A&U • MAY 2018

A Calendar of Events

olden Rainbow, which provides affordable long-term and transitional housing programs, as well as education and direct financial assistance, to low-income PLWHIV all over southern Nevada, will be the sole beneficiary of Dining Out For Life, an annual event held throughout the United States and Canada to raise funds for local AIDS service organizations. One-hundred percent of all money raised in Southern Nevada will stay local to support Golden Rainbow’s HIV/ AIDS Housing, Education and Emergency Support Programs. It’s easy to participate. On Tuesday, July 24, 2018, gather some friends and

MAY 2018 • A&U

go have lunch or dinner at one of the DOFL participating restaurants. Each restaurant has pledged a generous percentage of its profit from that day/night will go to Golden Rainbow. Enjoy a few hours out with friends, have a great meal, and raise funds for much-needed services! For more information on participating restaurants, please log on to www.goldenrainbow.org/diningoutforlife. To find a Dining Out For Life event in your area, log on to www.diningoutforlife.com.

continued from page 39

Melissa Rivers

utters Melissa evenly. Though she was regularly checked for illnesses, she was careful when it came to sex. “I was in relationships where I would not have unprotected sex until they were tested— and brought home the papers!” states Melissa proudly in a demanding tone. Regarding the present generation of young people, Melissa is distressed that they have such high rates of HIV infection. “Because it’s gone from a death sentence to a chronic illness!” she reasons vehemently. “… And that’s a problem.” Melissa scoots up on the edge of the sofa. “Everyone became too comfortable. This has led to a lackadaisical attitude towards prevention. It’s not the big scary word anymore. The pendulum has swung too far in the direction of ambivalence and ignorance.” Melissa goes on. “There’s a risk and it’s preventable. There are steps you can take to protect yourself.” She ponders, slowly rotating her glasses in her hand. “As to abstinence, two hormonal teens are going to think about abstinence first! Yeh, right,” Rivers mocks, as her expressive big brown eyes roll. Melissa notes that some of her friends keep a bowl of condoms available for their teenagers. “I don’t know if I could do it,” she questions, with a slight wince. “I’m willing to buy them to protect my son in any way I can.” Cooper, who is sixteen, spends most of his extracurricular time playing lacrosse. “If he’s sexually active,” she says, “he hasn’t told me. We’ve only had the first girl and the first girl kiss because that we talked about. “A little bit of fear is not a bad thing to keep kids safe. They should be scared when they do something wrong [like not stay on top of their sexual health].” Then Melissa points out, “You know, he’s a teen, he doesn’t want to hear this from mom. It’s embarrassing and it’s gross. He just wants to cover his ears!” Melissa mentions that her boyfriend read an article recently about the difference between the Millennials and Cooper’s generation (Centenials?). “It seems Coop’s generation is definitely a backlash against the Millennials. They don’t have interest in learning to drive. They grew up with Uber,” she reports, rattling off from memory. “They’re not terribly interested in rushing into sex or relationships. They’re civic-minded; they’re not a lazy generation.” She pauses. “I look at Cooper and his friends and they have

an occasional girlfriend or whatever, but there’s a lack of intensity.” Melissa turned fifty in January and the irrepressible lady feels blessed, attributing her grit to her father, who was German. “I was Daddy’s girl,” she lovingly proclaims. From her mother, who was Russian, Melissa gets her drive. “That’s a hell of a combination,” she enthuses of her parents. “It means I’m stubborn and have a bad temper.” She grins, but means it. Though Melissa considers Joan her mentor, her godparents also influenced her. They included a close female friend of her parents, Roddy McDowall, and Vincent Price and his wife, Coral Browne. Their framed photographs are displayed behind Melissa, on an elegant eighteenth-century chinoiserie secretary made of fine iron-red and black lacquer. Another photograph in the group catches my eye. An in-motion photograph of Melissa, dressed in equestrian garb, high jumping with her horse. Rivers is a skilled rider. “It’s interesting…,” she hesitates, perusing the photographs, “I didn’t realize how great an impact some people had on me until some time had passed.” Melissa briefly fiddles with her gold Cartier watch, her nails colored a vampy dark red. “My love of art came from Vincent Price, and Coral was a second mother to my mother. She was the chicest…woman…alive.” On the far side of the living room is a podium that supports a book, open to a page that’s written in bold type, “Melissa Rivers.” It’s from The Fabulous Photography of Kenn Duncan. One page has a full-length black and white photograph of five-year-old Melissa, already a fashionista, swathed in an elegant gown topped off with a long flowing bow. She looks like a little princess. On the opposite page there’s a smaller picture, a tender pose of mother and daughter head-to-head, Joan holding part of Melissa’s twelve-year-old head. “I miss just talking to my mother!” exclaims Melissa, adjusting her glasses that have fallen slightly off her head onto her forehead. “I didn’t have to explain the back story to her. She knew it.” Melissa and I touch on the subject of death. What does she believe happens after we die? She takes a break, then a long sigh. “I don’t know. I can’t answer that,” she laments sincerely, then speedily adds, “I certainly hope you can eat without gaining weight and not have to go to the gym.” Right

there. Right there in that subtle moment, her mom was present! In 1994 the two women portrayed themselves in a TV docudrama Tears and Laughter: The Joan and Melissa Rivers Story. They hosted E!’s Fashion Police, interviewed celebrities on the red carpet, and had a reality show called, Joan & Melissa: Joan Knows Best?, which also featured Cooper. An award-winning producer, Melissa has a unique way of dealing with grief. She’s kept her mother alive—by becoming her. Let me explain. In the 2015 Jennifer Lawrence film Joy, directed by David O. Russell, Melissa portrays her mom. It’s the true story of Joy Mangano, the Miracle Mop inventor, who was on Joan’s QVC show. Russell asked Melissa if she’d play her mother. She was honored to do so, but her initial reaction was fear. She says the biggest challenge was not to make Joan a caricature. “Melissa is a natural actor,” says David O. Russell, “who honored her mother’s memory by channeling her impeccably. She was literally a joy to work with, as she and [actor] Drena DeNiro performed on [the QVC] stage together.” Melissa raises awareness through her public speaking and by her appearances on talk shows. She’s a board member on several organizations concerned with health and social issues, a spokesperson for PETA, and is ambassador for Our House Grief Support Center. I ask Melissa to sum herself up in one word. In a soft monotone voice she replies, “Good.” She sits back and shoots off a contented smile. “My life is good; my son is good; emotionally I’m good; knock on wood, my career right now is good; and so is my personal life. I try to be kind, to be a good friend, a good parent—and above all, I try and do good.” With the current political storm surrounding budget cuts, increasing healthcare costs, and the lack of empathy from the current administration, it’s refreshing to know that the Rivers family is a force that rides the waves of discord, ultimately landing onto buoyant seas. Styling: Cary Fetman/Sean Black Hair: Frankie Hernandez Makeup: Denika Bedrossian. Dann Dulin is a Senior Editor at A&U. A&U • MAY 2018

MAY 2018 â&#x20AC;¢ A&U

Survival Guide

[a portrait by sean black]

“It’s important to me to write books featuring characters who are living with HIV/AIDS, be they caught up in mystery, adventure or an epic romance. We are a complex, diverse group of people. Our stories and our lives deserve to be interwoven into the fabric of modern times.”

—Randy Boyd

Randy Boyd’s four novels feature main characters living with HIV/AIDS and have been nominated for five Lambda Literary Awards. He blogs about living with HIV and more at RandyBoydsBlocks.com.

Sean Black is a Senior Editor of A&U.

A&U • MAY 2018

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

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

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

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

Possible Side Effects of Mytesi Include:

Tired of planning your life around diarrhea?

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

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

RELIEF, PURE AND SIMPLE

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

Should I Take Mytesi If I Am:

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

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

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

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