A&U November 2018

NOVEMBER 2018 • ISSUE 289 • AMERICA’S AIDS MAGAZINE

A&U’s 17th Annual

GIFT GUIDE plus

•Nonfiction by Dale Corvino • John Wikiera •Kevin Kelland • The HIV Book Project

our

Lady J

One of the Creative Forces Behind FX’s Pose Brings HIV Awareness to TV

What is BIKTARVY®?

BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements.

BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about BIKTARVY? BIKTARVY may cause serious side effects: } Worsening of hepatitis B (HBV) infection.

If you have both HIV-1 and HBV and stop taking BIKTARVY, your HBV may suddenly get worse. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to monitor your health.

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

What are the other possible side effects of BIKTARVY? Serious side effects of BIKTARVY may also include: } Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY. } Kidney problems, including kidney failure.

Your healthcare provider should do blood and urine tests to check your kidneys.

If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY. } Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death.

Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. } Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.

The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (5%), and headache (5%). Tell your healthcare provider if you have any side effects that bother you or don’t go away.

What should I tell my healthcare provider before taking BIKTARVY? } All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection. } All the medicines you take, including prescription and over-the-counter medicines, antacids, laxatives, vitamins, and herbal supplements. BIKTARVY and other medicines may affect each other. Keep a list of all your medicines and show it to your healthcare provider and pharmacist, and ask if it is safe to take BIKTARVY with all of your other medicines. } If you are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking BIKTARVY. } If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Ask your healthcare provider if BIKTARVY is right for you.

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

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

KEEP EMPOWERING.

Because HIV doesn’t change who you are.

BIKTARVY is a 1-pill, once-a-day complete HIV-1 treatment for adults who are either new to treatment or whose healthcare provider determines they can replace their current HIV-1 medicines with BIKTARVY.

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

IMPORTANT FACTS

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

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

ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults.

It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements.

BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. Do NOT take BIKTARVY if you also take a medicine that contains: • dofetilide • rifampin • any other medicines to treat HIV-1

BEFORE TAKING BIKTARVY Tell your healthcare provider all your medical conditions, including if you: • Have or have had any kidney or liver problems, including hepatitis infection.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-thecounter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

• Ask your healthcare provider or pharmacist about medicines that interact with BIKTARVY.

POSSIBLE SIDE EFFECTS OF BIKTARVY BIKTARVY can cause serious side effects, including: • Those in the “Most Important Information About BIKTARVY” section.

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

• Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

• Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.

• The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (5%), and headache (5%).

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

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

GET MORE INFORMATION • This is only a brief summary of important information about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.

• Go to BIKTARVY.com or call 1-800-GILEAD-5.

• If you need help paying for your medicine, visit BIKTARVY.com for program information.

BIKTARVY, the BIKTARVY Logo, DAILY CHARGE, the DAILY CHARGE Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies.

Version date: February 2018 © 2018 Gilead Sciences, Inc. All rights reserved. BVYC0047 06/18

c o n t e n t s November 2018

40 Cover Writer & Producer Our Lady J Talks with John Francis Leonard About Her Journey in HIV Advocacy, Working on the Hit TV Show Pose & the Importance of Representing the Realities of Individuals Who Are Transgender On-Screen

Departments

Features 18 Nonfiction Yasss Child by Dale Corvino 26 Promise Kept Long-Term HIV Survivor John Wikiera Celebrates His Long-Term AIDS Advocacy 28 Gallery Through Photography, the HIV Book Project Documents Rage, Resiliency & Rebirth Across Australia

6

Frontdesk

8

Digital Footprints

10

NewsBreak

14

Ruby’s Rap Ruby raps with John Alex Houlton

viewfinder 16

Bright Lights, Small City

21

For the Long Run

32 Conversation Starters Until There’s A Cure Commemorates Twenty-Five Years of Awareness with a Special Edition of The Bracelet

25

Our Story, Our Time

34 Better to Give A&U’s 17th Annual Holiday Gift Guide Spotlights HIV Fundraising Products, from Adam’s Nest to Visual AIDS cover photo by Sean Black

lifeguide 46

Treatment Horizons

48

Positive Justice

50

Access to Care

52

The Culture of AIDS

54

Lifelines

56

Survival Guide

Did You Know?

Your organization can receive FREE copies of A&U, America’s AIDS Magazine, to distribute to your clients!

Takes Creative Risks to Empower Others

MAY 2018 • ISSUE 283 • AMERICA’S AIDS MAGAZINE

JUNE 2018 • ISSUE 284 • AMERICA’S AIDS MAGAZINE

SUMMER 1993 & AFTER LOUIE VIEW GENERATIONAL LOSSES THROUGH DIFFERENT LENSES

FRONT

RUNNERS

• Dawn Averitt • Dan Nicoletta • Luna Luis Ortiz • Tori Cooper • Leo Herrera & The Fathers Project • The Billys • Christopher Costas • Ron B.

*plus

• Dr. Evan Antin • Larry Buhl on Keeping Sex Workers Safe • Rose Auslander

FILM FESTIVAL

*plus

Wilson Cruz

The Dedicated HIV Advocate Champions Youth Activism

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

JANUARY 2018 • ISSUE 279 • AMERICA’S AIDS MAGAZINE

HIV IS NOT A CRIME

Trevor Hoppe Talks About His New Book, Punishing Disease

Melissa Rivers

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

EVEN ME

LaWanda Gresham Inspires Others Living with HIV to Seek Support

*plus

• Avram Finkelstein • Positive Parenting • Geoffrey Couët & François Nambot • DIVAS Simply Singing!

• Gina Brown

david

Arquette

A Sibling’s Love Re-Energizes the Fight Against Stigma

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A&U Frontdesk

Lady Liberty

N

ow is that time of year to give thanks to all the blessings that we enjoy in this great country. When my great, great grandparents first settled in St. Joseph, Missouri, in 1847, they brought with them steamer trunks full of books in the original German—romance novels, encyclopedias, scientific publications, and a history book of America. They were seeking out a country free of persecution. In essence they were searching for a new beginning. They were hoping to settle in a country built on the principles of freedom of religion, freedom of expression, and freedom of thought. Sure, our nation was not free for everyone. Slavery still existed; millions of Americans lived with barely enough to eat; and disease was rampant in the big cities (cholera, typhoid fever, and whooping cough were the three leading causes of death for infants and the young). Missouri was a state that many in the mid-1800s sought out—land was cheap, the soil was rich, and hard work was rewarded fair and square. On a recent trip back to where I was born, I found St. Joe depressing—the downtown was bleak, the old farms were all but abandoned to cheap and brutal housing, and even the churches (once so freshly painted) were sorely in need of new aluminum siding. The Midwest of yesteryear was in steep decline. The rustbelt had taken over the cornbelt. And there were no gay bars, alternative cafés, not even a decent dive bar for Kansas City Barbecue ribs. It was a hometown that had lost its hometown feeling.

This month’s cover story subject, Our Lady J, might understand how I’m feeling about lowering expectations for hometown nostalgia. In John Francis Leonard’s insightful interview with the behind-the-scenes star of today’s groundbreaking TV hit Pose, the producer and writer, exquisitely photographed by A&U’s own Sean Black, talks about leaving small-town America (Pennsylvania, in her case) for the cultural capitals of Los Angeles and New York City: “I couldn’t wait to get out. I didn’t see myself neither in my village, or in television or media.”

Her artistic and musical talents saved her.

From rural America to Carnegie Hall, this

AMERICA’S AIDS MAGAZINE issue 289 vol. 27 no. 11 November 2018 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner

classically trained pianist and recording artist found a safe place for her gifts. “It felt natural—to take the shows I had been doing as a singer-songwriter and translate that into television.” As Leonard explains about an episode of Transparent penned

by Our Lady J, “Shea, a trans woman, is about to embark on an intimate relationship with the show’s central character Josh, a cisgender straight male..., but has to disclose her positive HIV status....She says of this experience, ‘I felt like my voice was accelerated because of that. In a way it was a blessing to have that pressure on me because I had to refine my skills really fast.

It was on the job training and the stakes were very high.’”

As Our Lady J illustrates and is so often the case, telling one’s story is a lifesaver. Now, more than ever in America, we need to create spaces for individuals who are transgender to tell their stories and document their experiences. The New York Times reports that the Department of Health and Human Services under Trump wants to interpret Title IX, the federal civil rights law that bans sex discrimination in federally funded schools, through a rigid gender lens, defining “sex as either male or female, unchangeable, and determined by the genitals that a person is born with.”

I don’t even want to think about how research funds for transgender health might dry up or how many individuals will not receive the care they need because the government has rendered them invisible.

In this issue, we celebrate visibility: Advocate John Wikiera continues to put healthcare access front and center; the photographers behind The HIV Book Project spotlight Australians living with HIV/AIDS; and our seventeenth annual Holiday Gift Guide, which supports the tireless efforts of ASOs to recognize all the needs of our community. All of us, however, need to step forward, claim our HIV-positive space, and strike a pose!

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 Fiction Editor: Raymond Luczak 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, Scot Maitland, Nancy Perry, Alex Ray, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011

In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 • Chris Companik, 1957–2012 Nancy Ellegate, 1959–2015 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

Printed in USA • Visit our Web site at www.aumag.org

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Hollywood Task Force★on AIDS to invite you to ★

HEROES ★IN THE ★ STRUGGLE ★ GALA RECEPTION ★

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★ AND AWARDS PRESENTATION Benefitting the Black AIDS Institute

World AIDS Day December 1, 2018

20% Off Tickets to a&u subscribers hits.eventbrite.com Promo Code: ANU20

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s t n i r p t o fo mosttweeted OCTOBER 2018 • ISSUE 288 • AMERICA’S AIDS MAGAZINE

Reversed: HIV+ on TV • Poetry by David Lewis-Peart • Nigel Bray • Jonathan & Derrick Allen-Young • Artists Kurt Weston, Barbara Romain & Alexandria Allan

@AmericasAIDSMagazine 8

ben

on INSTAGRAM

“I believe our struggle for justice must be grounded in deep love for our community...” Positive Women’s Network executive director Naina Khanna’s message in the September Survival Guide: A Portrait by Sean Black resonated with readers on Instagram and across the Web.

CUEVAS Portrait of an Artist as an AIDS Activist

mostshared

In October’s Positive Justice column, Hank Trout wrote about Cut the Stigma, a campaign launched by Black AIDS Institute and Lambda Legal to fight HIV discrimination. The article was shared more than any other in October.

@au_magazine

Sims photo by Holly Clark; Duke photo by Alina Oswald

Artist Ben Cuevas was interviewed MUSIC & and phoWORDS tographed •• Poet Rafael Campo Cabaret Artist Russell Deason • Singer Cody Bondra

by Sean Black for plus the October cover story.

“Ben is an inspiration!” wrote one reader, and we heartily agree!

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@au_americas_aids_magazine A&U • NOVEMBER 2018

NEWSBREAK World AIDS Day 2018: I Still Remember La Vie Galerie LLC, Livingston, New Jersey’s new arts venue, will commemorate World AIDS Day 2018 (December 1, 2018) with an exhibit of a new “photography narrative,” that is, a fictionalized narrative told in a cinematic style of storytelling using still photography.

The narrative for “I Still Remember” was conceived and directed by gallery owner, Vladimir Rios, and photographed by award-winning photographer, Lester Blum [A&U, August 2016]. It tells a story of love, devastation, and remembrance in the late 1970s and early 1980s.

Many gay men who lived through that time will recognize both the storyline and the characters in the narrative. “It was a time,” La Vie Gallerie says in its press release, “when men sought an immediate connection, a search for permanence, and a commitment of love,” in the years immediately before the chaotic devastation of the pandemic of HIV/AIDS. Fear, rejection, declining health, all became the new normal for many after 1981. When one of the characters in the narrative dies, his lover and friends gather on Fire Island to celebrate his life, keeping him and others alive in their memories. “I Still Remember” is designed to convey to the viewer both the joy and heartbreak of the era.

“I Still Remember” was conceived and executed not only to memorialize those whom we lost to the pandemic, but also to remind all of us that the fight against HIV/AIDS is not over, recognizing how important it is for us to understand our past as we work towards a cure and elimination of the virus.

The new La Vie Galerie LLC, opened in October 2018, is a multi-room gallery which exhibits “emerging, mid-career, and established artists creating contemporary paintings, fine art photography, sculptures, ceramics, and jewelry.” The mission of the La Vie Galerie LLC is two-fold: to provide its artists greater exposure to a new market and to present special exhibits pertaining to social issues, such as “I Still Remember.”

La Vie Galerie LLC, 106 Naylon Aveue, Livingston, New Jersey, 07039 , may be reached by phone at (917) 621-7255 and by email at LaViegalerie@gmail.com; “I Still Remember” opens on World AIDS Day 2018, December 1, 2018.

Desmond Tutu Award for HIV Prevention Research and Human Rights The 2018 Desmond Tutu Award for HIV Prevention Research and Human Rights was presented to HIV researcher, physician and community advocate Linda-Gail Bekker of Cape Town, South Africa. The presentation was made at the Opening Plenary of this year’s HIV Research for Prevention Conference (HIVR4P 2018) on Monday, October 22, in Madrid, Spain.

Named in honor of South African cleric Desmond Tutu, one of the leading global advocates for HIV prevention, the Tutu award is presented every two years to an individual or organization that has worked to advance both HIV prevention research and the human rights of people affected by HIV. HIVR4P Co-chair Z Mike Chirenje of the University of Zimbabwe was effusive in his praise of Bekker. “Linda-Gail Bekker is a tireless and innovative leader of efforts to ensure effective HIV prevention for all,” he said. “From her clinics in the impoverished Masiphumelele

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A&U • NOVEMBER 2018

newsbreak and New Crossroads townships of Cape Town, to her role as chief operating officer of the Desmond Tutu HIV Foundation and in her capacity as immediate past president of the International AIDS Society, Linda-Gail’s fearless advocacy and personalized models of care have saved lives and helped to break down barriers of stigma and discrimination in HIV prevention.”

Bekker established user-friendly clinics throughout South Africa that offer services that welcome all, especially young women and girls, men who have sex with men, and others traditionally overlooked by healthcare systems. The mobile “Tutu Testers” she has championed bring voluntary HIV testing, counseling and information to underserved communities.

Her clinics have provided mundane but important services such as babysitting and clothes washing to individuals who could not otherwise keep their appointments.

At the same time Bekker, Professor of Medicine at the University of Cape Town, has coled international research studies to develop new HIV prevention methods, including HIV vaccines, vaginal rings for HIV prevention, and oral and injectable pre-exposure prophylaxis (PrEP). Recently, as international scientific chair of the AIDS 2018 conference in Amsterdam, The Netherlands, Bekker spoke on a global stage in support of increased financial and political support for HIV prevention research.

Previous recipients of the Desmond Tutu Award for HIV Prevention and Human Rights include Archbishop Tutu himself, who received the first award in 2014, and Ambassador Deborah Birx, Coordinator of the U.S. Government Activities to Combat HIV/AIDS and Director of PEPFAR, in 2016.

“I am both delighted and hugely honored to accept this award,” said Linda-Gail Bekker, “especially following in the footsteps of wonderful people like the Archbishop and Ambassador Birx. This award reminds us that, ultimately, all the work we do is to improve the lives and well-being of men, women and young people—fellow human beings everywhere—and that’s what really matters.”

“Linda-Gail Bekker reminds us every day that the goals of stopping HIV and protecting the rights of everyone affected by the epidemic are inextricably linked,” said HIVR4P Co-chair Susan Buchbinder of the San Francisco Department of Public Health. “Her belief in the dignity of all people is the key to her effectiveness—whether she is holding political leaders to account in international policy-making forums or working one-on-one with patients in the clinic.”

HIV Research for Prevention (HIVR4P) is the world’s only scientific meeting dedicated exclusively to biomedical HIV prevention, including vaccines, antibodies, microbicides, treatment as prevention, pre-exposure prophylaxis (PrEP) and new forms of HIV prevention.

Conference funders include the Bill & Melinda Gates Foundation, U.S. Department of Health & Human Services, U.S. National Institutes of Health, Gilead, ViiV Healthcare, anRs (French Agency for Research on AIDS & Viral Hepatitis), Janssen, GSK, International AIDS Vaccine Initiative (IAVI), Instituto de Salud Carlos III, Gobierno de Espana, Ministerio de Ciencia, Innovacion y Universidades, International Partnership for Microbicides, MSD, and the South African Medical Research Council.

For more information, visit: www.hivr4p.org.

Day With(out) Art Visual AIDS has announced its programming for the 29th annual Day With(out) Art on December 1, 2018, World AIDS Day. The program, ALTERNATE ENDINGS, ACTIVIST RISINGS, emphasizes the impact of art in AIDS activism and advocacy today. The organization has commissioned short videos from six community organizations and collectives—ACT UP NY, Positive Women’s Network, Sero Project, The SPOT, Tacoma Action Collective, and VOCAL NY—representing a wide range of creative activist responses to the ongoing AIDS crisis. The videos reflect the continuing urgency of today’s HIV/AIDS epidemic, particularly addressing intersectional political concerns, including HIV criminalization, Big Pharma, access to healthcare, and the disproportionate effects of HIV on marginalized communities.

The videos will premiere on December 1 at the SVA Theatre, New York City; other screenings have been arranged for December 8 at The Broad Museum in Los Angeles and for December 15 at the Museum of Contemporary Art in Chicago. Other screenings will be announced. Currently, Visual AIDS is looking for more institutions to screen the hour-long video program on or around World AIDS Day, December 1, 2018. The video program will be provided free of charge, with technical and presentation logistics coordinated with you by Visual AIDS. Day With(out) Art was founded in 1989 in response to the growing AIDS crisis. Visual AIDS called upon arts organizations, museums and galleries throughout the U.S. for “mourning and action in response to the AIDS crisis” to coincide with the second annual World AIDS Day. More than 800 of them participated by shrouding artworks and replacing them with information about HIV and safer sex, locking their doors or dimming their lights, and producing exhibitions, programs, readings, memorials, rituals, and performances. By the mid1990s, Day With(out) Art had signed up more than 8,000 participants throughout the world.

To screen ALTERNATE ENDINGS, ACTIVIST RISINGS through your organization, please contact Day With(out) Art Project Manager, Kyle Croft: kcroft@visualaids.org or (212) 627-9855. For more information about Visual AIDS and the Day With(out) Art, including the organizations that have produced the videos for ALTERNATE ENDINGS, ACTIVIST RISINGS, log on to http://visualaids.org/projects/detail/alternate-endings-activist-risings.

—Reporting by Hank Trout NOVEMBER 2018 • A&U

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by Ruby Comer

I

t’s that time once again to trek to bliss!

That’s what I call the desert. I usually head to Palm Springs, but this time my destination is Rancho Mirage and I’m parking my derrière at The Westin Mission Hills Golf Resort & Spa. My girlfriend Kelly Marie, a New York City travel agent, raved about it, so why not give it a whirl?!

Smack dab in the middle of their lobby, in a fenced area, is the cutest little white mutt, named “Henry.” I was so involved in petting him, I nearly forget to check-in.

Henry is part of The Westin’s “Adopt A Dog” program. The resort is heavily committed to helping local charities, like the American Heart Association, FIND Food Bank, Desert Cancer Foundation, and the Desert AIDS Project (DAP).

They have also refurnished several homeless shelters for Vets, and on Thanksgiving they serve dinner at the local Salvation Army. As one of the concierges smartly said, “The Resort is an equal opportunity giver.”

Once settled in my cozy cabana suite that sports a balcony overlooking the golf course, I call my dear friend, John Alex Houlton. When I say his name, it’s like I wanna put “Sir” in front of it! His name sounds so officious.

In fact, he was a diplomat.

Let me tell you about this extraordinary man who has had an extraordinary life…of nine lives.

A Brit by birth, John served in the Royal Air Force and attended the University of Oxford,

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earning a BA in English language and literature. He then swept across the pond and earned an advanced degree in Theatre, Film, and Television at UCLA. He served as Consul General at L.A.’s British Consulate, where he produced several U.S. television series. His final position was as co-creator and director of the British Film Office in the U.S. For his services, he was awarded both an OBE (Office of the Most Excellent Order of the British Empire) and an MBE (Member of the Most Excellent Order of the British Empire).

This is where John’s life gets more fantastic. He was married to Christine Evenson Houlton for thirty-three years, until her death in 2001. They had two children and now at eighty-six, John Alex has five grandchildren. After Christine’s death, the English gentleman began exploring his “queerness,” though he never before had gay feelings.

Out of his exploration came his love for leather and other expressions of kink, and he began writing gay erotic fiction under the pen name of Alex Ironrod. Alex has published thirteen books and is currently pondering on his next, where the protagonist will be HIV-positive and other characters will be on PrEP. John Alex, who lives with his partner of six years, Michael, pops over to the Resort and we have breakfast in Pinzimini’s, just off the lobby.

Westin is not for the haughty or party crowd, but more for the fair-to-middlin’— like me. I order a cheese and spinach omelet, while John Alex has eggs Benedict and cranberry juice. The lively whistling waiter, Juan Manuel, introduces me to this fab drink called Gloria’s Renewal Juice, which consists of broccoli, spinach, cucumber, ginger, parsley, celery, orange juice, and honey. Yum. Ruby Comer: [John Alex glances out the window at the inviting sun-reflected pool.] Say, when did you first encounter the epidemic?

John Alex Houlton: While employed in Los Angeles, I returned to Britain every couple of years for work and pleasure.

Each time I visited with David, a former Oxford friend, and his American male partner. On one particular visit in the eighties, he was ill, tiring quickly. He had a

Ruby illustration by Davidd Batalon; photo by Mark Chester

John Alex Houlton

A&U • NOVEMBER 2018

hacking cough, and little appetite. There were some fresh sores on his face and hands. I stayed only a few hours as he didn’t want to discuss his health. I’d heard about a “gay cancer” that was proving fatal.

Six months later, David was dead. I had encountered [the first person I would know to die of AIDS-related causes] and hadn’t really understood or helped.

How awful to have lost an old chum.

Gradually I came into contact with more [individuals who died of AIDS-related causes], even in my rather closeted straight world.

I began to learn more about the disease from staying in contact with friends who were suffering.

photo courtesy J.A. Houlton

Fortunately for you, when the AIDS crisis hit, you were in a monogamous marriage and a government job that kept you extremely busy.

I have been fortunate, Ruby. [He bites into some whole grain toast, spattered with marmalade.] By the time I came out as a gay leather man, I learned enough to practice safe sex. My losses were small, compared to so many other men, such as Cole Tucker.

Cole Tucker. Cole Tucker [I repeat, trying to recall the person]. Who is that, John Alex?

Cole was the first openly HIV-positive gay porn star at the beginning of the twenty-first century. He started doing porn at the age of forty-five. A mutual friend introduced Rick Karp [Cole’s birth name] to me. Rick was searching for someone to co-author his life story. Our collaboration turned out, Cole Tucker–15 Minutes of Fame & a Helluva Lot More. In 2015, Rick died from complications of AIDS. (He pauses, now pensive.] I am presently looking for a publisher. [He clears his throat and takes a sip of tea.] Rick certainly has a fascinating story to tell.

What is your sense of safer sex among the leather crowd?

Well, Ruby, within the leather crowd, my experience is that the senior members play safe, including those who live by the rules of Old Guard, New Guard—and simNOVEMBER 2018 • A&U

my stories as a sounding board, or as an expression of my own new interests and desires.

Michael and John Alex

ilar organizations. We work to pass on the need for safe sex to the next generations by our example and teaching. Trust and obedience are major code words in that life, and perhaps, even more importantly, in that sex life.

I don’t know very much about that world, though I do like a little slap on the fanny every now and then from my financé Rudy!

[John Alex grins.] I want to hear more about your “transition” from straight to gay.

After Christine’s death, and following my inability to connect sexually with other women, I got help from a psychiatrist friend. In the process of analysis, I realized that from my late teens I had had a fetish for boots and leather, which I had sublimated by riding and owning horses; an interest I shared with Christine over the years. [John Alex met Christine on a horseback ride in the San Fernando Valley of Los Angeles in 1968.]

The psychiatrist explained that her death, coupled with my retirement from full-time employment in the same month, was a traumatic shock. This trauma opened new aspects of my personality, revealing my queer nature, and my willingness to embrace it.

How was this new road for you?

It was neither an easy decision nor a simple road to follow. It was something I needed to accomplish, but I enjoyed the learning process.

Therapeutic…to say the least. [The waiter bops by and I order another “Gloria” drink; John Alex gets a tea refill.]

It was during this same time that I started writing gay erotic fiction. I sometimes used

[John Alex retrieves my white cloth napkin that fell to the floor.] Who do you consider a hero in the pandemic?

The heroes are those brave men and women who have found a way to go beyond the pandemic.

They have coped with the numerous inhibitors, and continued to contribute to the community. While they may not see themselves as heroes, they are.

Who does John Alex Houlton look up to?

Mother Teresa…Martin Luther King, Jr....Winston Churchill [he takes a profound breath then continues]…and the men and women who defend their countries with their lives, and fight in defense of democracy around the world.

You’re svelte, vibrant, debonair, and full of zeal. What’s your secret to longevity?

Carpe diem—my lifetime motto.

Ah, hearing that reminds me of Robin Williams’ film, Dead Poet’s Society. What do you think happens after we die?

I believe that after death, we are blessed with another life, which includes those we have loved.

What a lovely thought. I hope so! [We leave the dining area and amble down the corridor to the lobby. Supply a final thought, “Sir” Houlton.

So many men and women who were killed in the World Wars of the twentieth century believed they were giving their lives in service to their country. They were mourned and honored for their service.

[Coming upon Henry, the dog, John Alex stoops down to pet him. John Alex looks up at me with his soft blue-grey eyes, and concludes his thought.] Sadly, those who died and who are dying of AIDS have not secured such sympathy from their fellow countrymen and women.

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.

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Fear & Judgment

W

hether we’re searching for a relationship, companionship, or a casual fling, probably the biggest obstacle we face as poz individuals is other people’s fear. So often, someone’s fear of HIV/AIDS causes them to shut down before they really give us a chance.

I myself, in any encounter, believe in full disclosure well before things get serious in any way. I can’t even begin to count the number of conversations that have ended online, rather abruptly, after I fill someone in on my status.

Years ago, when they expressed their fear, I too often went on the defensive, delivering a pedantic lecture about the realities of transmission as well as their judgment of me.

Well, what I too often saw as judgment was simply fear. In men younger than myself, it was probably the fact that they didn’t understand completely and instead of filling them in on some simple facts, I judged in return, rather harshly at times. In men my own age and older, the fear had more of a basis in the history of the plague that they themselves had probably lost loved ones to. Still, I feel that part of the problem was a lack of education.

The concept of safe sex is hardly new, and with what we today know about treatment and the risk of transmission, there is no reason to really avoid intimacy with a poz woman or man. It can really be exhausting having to explain these facts to people who aren’t aware of them, however, and that conversation hardly lends itself to romance.

I’ve mellowed a bit over time, but I still find myself occasionally telling off a man on an app who hits me up with a compliment or hello but who does something like spelling out in his profile his rejection of anyone who’s positive. We’ve all seen that odious phrase “drug and disease free” on the apps and the dating websites. Sometimes, it is as simple as listing “HIV–” under your preferences. It all stings and, if we choose to remember it, comes from a place of fear and a lack of real knowledge. Can I call myself an

16

advocate if my own reaction is one of anger and judgment?

There’s a great guy in my life that I see a few times a year when he travels to my city on business. I’ve known Paul for years now. We initially hooked up online about four years ago. At the time I was hesitant; I was burnt out on one-night stands and looking for something more substantial. I just couldn’t achieve sexual gratification with someone with whom I didn’t have a level of intimacy established.

I took a chance and found an immediate connection with Paul. I felt comfortable

with him from the start and we were a great match sexually. Paul is a little different than the men I usually end up involved with. He was married for twenty-five years and is the father of three grown children. I wouldn’t call Paul gay; he’s more of a bisexual who, after a marriage that ended badly, has now decided to limit his experiences to other men. He grew up a conservative Catholic in the Middle East and is out to no one other than his daughter, who found out about his attraction to men accidentally.

After our first encounter, Paul returned home to California and we remained in touch.

Looking back now, we were both a little smitten at first; then something happened that almost ended our relationship. I mentioned something about my status assuming that I had already told him. It came as quite a shock to him, and, while he never got angry,

he was quite upset. We spent a lot of time on the phone during which I reassured him that there was no danger; we had used a condom and been safe. I also tried to explain U=U to him, but that was beyond his grasp at the moment. He was still a relative newcomer to the gay world and he couldn’t think beyond his fear. Over time I managed to reassure him and we have remained intimate. We’re friends who have sex and share affection with each other and both of us enjoy it that way. There’s no talk of love, no thought of a future and as long as we both remain single we enjoy each other’s company when he’s in town for business or to see family.

But for Paul, the fear remains.

He’s in town right now and is my guest as usual. Just the other morning after a night of great sex, I had to reassure him agin that we weren’t doing anything unsafe and that regardless, sex with me was safe. I’m regularly tested for other STIs and remain undetectable.

Paul is a good and decent man who’s always been good to me and I never mind explaining all of this to him, again. He didn’t come of age in the gay world and yes, to him, AIDS is a disease he only thinks of in relation to gay men.

He is a man who was faithful to one person in a long marriage and it’s not something he had to worry about, but he worries now.

Maybe, just maybe, I can apply some of this patience to some of the other men I interact with, men who are also afraid. If I want to be an advocate and to do more to educate others, a little patience might be called for.

I can’t expect tolerance and understanding when I am so quick to judge in return. I’ll have to come from a place of understanding and tolerance if I want to call myself a true advocate and educator.

John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for fifteen years and he is currently at work on his first novel, Fools Rush In. His fiction has been published in the ImageOutWrite literary journal and is a literary critic for Lambda Literary. Follow him on Twitter @JohnFrancisleo2.

A&U • NOVEMBER 2018

illustration by Timothy J. Haines

two sides of the same coin

SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN

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

o i Nonfiction t c i f n D o Yasss Child

by Dale Corvino

o you remember when we met?”

Nico asked me over a FaceTime call. Nico had long ago lost his hair and shaved his head; his facial wasting had been treated with injections of fillers. He battled the signs of aging he never expected to face with liberal applications of lotion.

“You were dressed up and tan…

You hauled that giant suitcase up five flights…” I answered. The face that appeared on my phone screen—flickering somewhere between restoration and reenactment—smiled in recognition. We hadn’t seen each other since Nico moved to Santiago years ago.

“Do I look the same?” Nico asked, preening while displaying his profile.

“It’s uncanny,” I deadpanned. “I can’t believe we are mugging at each other a continent away!”

“Yasss child. Tecnologia.”

Nico had long called everyone ‘child,’ which he’d picked up from his first roommate in Detroit, a Southern black woman. They shared an entire floor of an empty department store downtown, and would yell out “Yasss child” to find each other.

“Joseph was with you…”

“Oh, yeah…” Nico answered. A tear tracked down his visible cheek.

Nico’s dandified appearance—new shoes, Italian suit, colorful scarf—had me convinced he would never be satisfied with the simple railroad flat when he first visited. He’d responded to a notice I’d posted in the housing office of their art school.

“I got this place through a friend of my dad’s. It’s cheap, being a walk-up.

But life around here sure ain’t, plus supplies are expensive.”

“Yasss and clothes and shoes and stepping out…” he flung his scarf around his neck.

It was startling how much of the small apartment Nico managed to take up already, but I was drawn to him all the same.

“I know it’s small, but I thought…”

“I’ve got cash in hand for the deposit and a month’s rent,” Nico said, cutting

18

me off and handing me a stack of bills.

“Now let’s check out the roof.”

I wanted this exotic creature in my life, to counteract my moody self-absorption, and a provincial cast I couldn’t seem to shuck. This will be good for me, I thought as I led Nico up the top flight of stairs.

Nico’s boyfriend, Joseph, was a closeted grad student from a wealthy family.

After a fight, he’d demanded that Nico move out of his apartment, and had accompanied him to my place on moving day. Though I lacked experience in gay relationships, I’d rightly deduced that it had been hard to keep in the closet as Nico’s boyfriend. Joseph, who was running a fever, broke it off with finality right there on my doorstep while I tried not to watch. Joseph was all aggrieved posturing, while Nico was subdued. As Joseph stomped off, Nico closed the door behind him and rolled his eyes.

“Are you okay?”

“I feel a fever coming on, too.

Check,” as he put my hand on his forehead.

“You do feel warm.” I assumed it was hypochondria, or heartbreak, or some combination.

Nico was now showing me the view out his window, a busy commercial street in the Bellas Artes section.

“I remember saying I was trying to save money, but looking back, I think I was inviting change into my life…” I said.

“Yasss…Just call me Cambio Internacional,” Nico answered off-camera.

Soon after moving in, Nico took off to Madrid. He had a portable easel, and painted wherever he traveled. His professors loved his paintings, whereas they were less impressed with my tentative, plodding work. Nico’s subjects included haunted carousels, bodily mechanisms, and debris fields, all rendered in raw pigment. He returned from Spain with that giant suitcase stuffed with books, clothes, medication, toiletries, liquor, and flattened auto parts he’d run into

busy streets for. He’d ink and pull prints from them, acing his printmaking class.

One rare night when we were both home, Nico made an international call.

He was yammering on ostentatiously, switching between French and Italian.

Upon hanging up, he turned to me.

“Yasss child. My friend Franca, fabulous. I met her in Rome, she lives in Paris now.”

“Ok, that was a pretty long call…”

“What are you doing tonight? We’re going to Suzanne Bartsch’s party. You should come.”

“Don’t you have to know someone to get in?”

“You know me! We just have to do something about your clothes…”

Nico rifled through his closet and pulled an outfit for me: an oversized striped jacket, a printed tee shirt, and a bead necklace. He teased my hair as high as he could make it.

We got to the venue—a strip club on other nights Bartsch had taken over— and were immediately whisked in by the doorman. Nico dragged me to the dance floor and strutted through the crowd. I met Nico’s circle of friends who pronounced me adorable! We partied until the club closed. In the taxi home, Nico kissed me, just once, fast but hard so the driver wouldn’t notice.

“You remember the time we fucked?”

“Yasss child, I turned you out.” Nico brought the camera to his mouth and pursed his lips.

“The first and the last time…”

“I was your lover, your mother, your pimp, and your other,” answered Nico, laughing.

One night, I went to the opening of Suzanne Bartsch’s latest party and a hangout afterwards at the Odeon. The next morning, I stumbled up the stairs in my disheveled club outfit to find Nico struggling to unlock the door.

“Nico! You missed Suzanne’s best ever…”

“Yasss child. You’re getting into it. I just came back from the hospital.”

A&U • NOVEMBER 2018

“Oh! How’s Joseph doing?”

“He’ll be fine. How was the party?”

Nico awoke after a few hours and ran into the bathroom. The commotion woke me up. On my way into the kitchen, I noticed that Nico’s sheets were soaked in sweat. He emerged from the bathroom looking worn. I looked at him expectantly.

“Joseph is dying, and I have AIDS,” he said.

I tried to speak out against the gasp Nico’s announcement had provoked.

“That fever I was running the day I moved in? That was the onset.” He wrapped himself in a blanket. “My diagnosis—let me remember what she said— rapid deterioration within a few months.”

I couldn’t breathe.

“You need to get tested,” he added solemnly.

When I returned to the clinic for my result, the nurse sat me down in a small office.

“Your test came back negative,” she said.

I lost my breath again, and the color

NOVEMBER 2018 • A&U

drained from my face. She meant that my blood did not show antibodies, but to my ear—unfamiliar with medical parlance—negative sounded bad.

She grabbed me by the shoulders and explained.

Nico found an experimental drug trial testing AZT. He would face a battery of opportunistic infections: thrush, parasites, Kaposi’s. As he surfed from one drug treatment to the next, his ear for language served him well with the lexicon of drugs, symptoms, and pathogens.

My job was to maintain the routines of our flat, absorbing new habits into our compact household. We invested hope in each inhibiting agent with the promise to stop his healthy cells from betraying him. Each test result was a transmission from the front line, drawn somewhere through his tan body. With every new treatment, his prognosis improved incrementally. There were side effects: the lipodystrophy, a constant metallic taste, exhaustion. He permanently lost his sense of smell after a bout of meningitis.

He faced each setback with astounding

nonchalance. The first time he stepped through my door, I thought Nico’s flamboyance was weakness, but I’ve come to see it as emblematic of his bravery.

“I’m still here!” Nico yelled as I panned the phone to show him the view out my window. It was winter in New York, summer in Santiago.

“And I’m still in Hell’s Kitchen…”

“From Hell’s Kitchen to Bellas Artes, from my tin can to yours…” Nico joked.

“And the string between us…”

“Yasss child.”

Dale Corvino (dalecorvino.com) has published essays on Marilyn Monroe, Blondie, and kink. His short fiction has appeared in Ovunque Siamo, Jonathan, and Chelsea Station, and his creative nonfiction in Carte Blanche (CA). He’s participated in live storytelling (RISK!), received the 2015 Christopher Hewitt Award for Fiction, and was a finalist in the 2017 Saints and Sinners Short Fiction contest. His latest publications include the anthology Hashtag Queer and the upcoming nonfiction anthology Queers Around the World, both from Qommunity Press. He lives in Hell’s Kitchen with the sullen young man of his dreams.

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Bringing hearts together since 1998

HIV+ Owned Since 1998

Thanks to Whom? by

Hank Trout giving thanks is a transitive verb

NOVEMBER 2018 • A&U

For me, that’s the key—that “giving thanks” is a transitive verb. One is “thankful to” someone. “Giving thanks” requires an object to receive the thanks being offered. Obviously, for me, and a growing number of others, that rules out thanking gods I don’t believe exist. But it doesn’t preclude my offering my sincere and deeply, daily felt gratitude to others, to the real flesh-and-blood people who have had an impact on my life, even those whose impact has not always been pleasant.

For example, like hundreds of thousands of us, I curse the toxic pills I have to swallow every morning in order to remain alive and function. Still, even though I often feel that I have served as an unconscionably uncompensated guinea pig for big pharmaceutical companies since 1996 (after all, even lab rats are fed now and then), I am inexpressibly thankful to everyone who worked on the creation of these medicines that make life possible for me. I would speak your names if I knew them.

When I shop the Farmer’s Market on the Sunday before Thanksgiving, I will express my thanks to each farmer for every chanterelle or portabella mushroom, for every bunch of basil sage thyme and parsley, for every heirloom tomato, for the baby spinach arugula heart-of-romaine salad mixture, for the raisins and the nuts and all of Fall’s bounty brought to us by people who do back-breaking work to feed us. Of

course I am thankful to them.

On a deeply personal level, I am thankful for all the people at the San Francisco AIDS Foundation, particularly the folks in the Elizabeth Taylor 50-Plus Network, and at Shanti and Project Open Hand. They have been instrumental in creating a community of long-term HIV survivors here in San Francisco and in helping to ensure our physical and psychological health.

And of course I am thankful for my companion for seventeen years, my partner fiancé caregiver Rick. Every breath I breathe is filled with gratitude for your presence in my life.

So, Happy Thanksgiving, everyone. As you gather with friends and family and sit down to your Thanksgiving feast this month, if you offer thanks to your favorite deity for autumn’s bounty, be mindful of and be sure to thank the actual living, breathing people in your life to whom you are truly thankful. And if some of those folks are long-term survivors, even better!

And of course if anyone asks you to go dancing after dinner, by all means, say “Yes!” We will all be unseen ephemera soon enough.

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.

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illustration by Timothy J. Haines

W

hen people discover that I have been a committed atheist since the age of nine (blame Methodist Sunday “Bible School”), they often ask, “Well, if you don’t believe in God, what do you believe in?”

I think it sometimes disappoints them that my answer is so easy.

Do good. Be kind. Think critically. Use Reason. Respect others. Be mindful of your impact on the rest of the world. And most important, NEVER ever pass up an opportunity to dance!

That is the totality of what I believe in. That’s it. No imaginary sky-daddies, no faery tales about talking snakes and talking-while-burning bushes and people living inside the belly of a whale for a few days, no forty-seven virgins or other rewards waiting for me in some celestial after-death.

As a twenty-nine-year long-term HIV survivor, I’ve had to confront my own mortality on more than one occasion—as all of us survivors have—but I won’t pretend to speak for anyone but myself.

I expect nothing when I die. No rewards, no punishment, just…nothing.

Physics teaches us that matter cannot be destroyed, it can only be converted into energy. Thus, I understand that when the physical matter that makes up my body is cremated, the burning of my cells will release a brand-new energy into the world that was never there before. But that energy released will have nothing even remotely to do with “Me,” with either my physical body or my ego. I will become unseen ephemera. That knowledge neither comforts nor alarms me; it simply is.

And it’s enough for me. “Do good. Be kind…dance…”

Actually, “unseen ephemera” sounds lovely to me.

Please keep in mind that, just as I know no gods, I also have no patience with New Age bromides like No matter how bad things get, there’s always something to be thankful for. Well, no, not always. We’ve had this discussion before. Sometimes one must dig much deeper inside than a Hallmark card sentiment to find things for which one can truly be thankful to someone.

YOU MATTER AND SO DOES YOUR HEALTH

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

WHAT IS DESCOVY®?

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

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

IMPORTANT SAFETY INFORMATION

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

What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: • Changes in your immune system. Your immune system may get stronger and begin to fight infections.

Tell your healthcare provider if you have any new symptoms after you start taking DESCOVY. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you to stop taking DESCOVY if you develop new or worse kidney problems.

• Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that

can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

• Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.

The most common side effect of DESCOVY is nausea.

Tell your healthcare provider if you have any side effects that bother you or don’t go away.

What should I tell my healthcare provider before taking DESCOVY? • All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection.

• All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how DESCOVY works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist.

Ask your healthcare provider if it is safe to take DESCOVY with all of your other medicines.

• If you are pregnant or plan to become pregnant.

It is not known if DESCOVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking DESCOVY. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

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

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

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

photo by Don Harris © Don Harris Photographics, LLC. all rights reserved

H

24

appy Halloween, everyone.

This month I’ll be addressing stigma and sex workers.

Sex workers can be of all genders, sexual orientations, races, and any sex. They face so many challenges created by people’s negative opinions of their professions, HIV stigma, police brutality, etc. We need to address these issues in our community as a whole to decrease discrimination, stigma, and HIV acquisitions.

According to the CDC (2016), sex workers are “people who exchange sex for money or nonmonetary items” and are at increased risk of acquiring or transmitting HIV and other STIs because they are more likely to engage in risky sexual practices and substance use.

So what are some factors that keep sex workers at risk for acquiring HIV/STIs? Police Brutality In a 2008 report, “Move Along: Policing Sex Work in Washington, D.C.,” by the Alliance for a Safe & Diverse DC, thirty-eight percent of the participants in the survey reported abuse (both verbal and physical) from police. Seventy-five percent of transgender and 82.4 percent of Latinx sex workers reported that their treatment while in jail was worse than others that were in jail with them. How can sex workers rely on help from the

police when they are constantly being abused by the very ones who are supposed to be protecting them? Also, after being abused by police, 8.6 percent of the survey participants said that the police took or destroyed their safer sex supplies.

Discrimination People often discriminate against sex workers because of the negative perception that sex workers are disposable. This is not true. We have to start looking at sex workers as members of our society who deserve the right to be known and counted. Consider supporting organizations that advocate for sex workers, especially those run by sex workers.

Access to PrEP Pre-exposure prophylaxis (PrEP) is an opportunity for sex workers to protect themselves against HIV infection. Luckily, according to the Global Advocacy for HIV Prevention, the drug Truvada, which is the medication used in the only PrEP regimen currently in use, is available through most private insurance and Medicaid. Gilead Sciences, which makes Truvada, also has two programs that can help you pay for PrEP (Medication Assistance Program and Gilead Advancing Access program). But how can someone pay for or even have access to PrEP when their very livelihood is contantly being

attacked and there is no information available to properly advise sex workers of the benefits of this relatively new prevention tool? We must do more to ensure access to PrEP (and PEP).

Male Sex Workers As we know, men who have sex with men (MSM) are in one of the highest risk demographics to acquire HIV. In a 2015 study by Amanja Verhaegh-Haasnoot et al., in a group of 212 male participants who identified as male sex workers, forty percent tested positive for HIV/STIs. Fourteen percent of the 801 female sex workers who participated in the same study also tested positive for HIV/STIs. Male sex workers also reported having fewer clients in the same study.

Knowing this fact, it is very possible that fewer clients means the male sex workers were more apt to have raw sex because the client will give them more money.

Sex work is one of the oldest professions in our nation, and luckily technology has allowed sex work to go mainstream and, in some ways, legally. It is not up to us to judge anyone for the work they do. The more judgment you give, the more you should feel ashamed…not them. ◊

A&U • OCTOBER 2018

Black & Underinsured healthcare shouldn’t be this hard to access

illustration by Timothy J. Haines

I

’ve led an interesting life in terms of the types of insurance coverage I’ve had over the past thirty-plus years of my life.

As a child, I was always on my father’s insurance. That coverage was great since he worked for the city as a police officer. I was covered for everything all the way up until I was twenty-three years old. Then I went on to getting my first job and having to choose my own health plan all the way up until I was thirty-one, through various jobs of course. Now, at almost thirty-three, I am the owner of my own business. Navigating the world as a person who makes too much for Medicaid, but not enough for an out-of-pocket plan in the health exchange, I would say I am part of the underinsured.

Knock on wood, I’ve lived a pretty healthy life even with the HIV diagnosis. I’ve never been hospitalized overnight, never broken a bone, and have been to the emergency room less than five times in my life. I eat right, I exercise and do my best to keep healthy so as not to become high risk for certain health issues that run in my family like diabetes and heart issues. Luckily for me, although I don’t have a primary health insurance plan, I have a state plan which at a minimum covers my HIV medication and treatment.

But all my health concerns aren’t just HIV-related. Every once in a while, something else is going on with me healthwise and I’m stuck between a rock and a $5,000 visit to the emergency room. I exaggerate, but then again, I am telling a truth that many of us face. That decision to tough out the pain or illness, try over-the-counter products until we are damn near on death’s door before making the decision to go seek medical help, or being thankful to make it through with minimal long-term effects.

This September one of my worst fears would come to fruition. I was lying in bed around 4 a.m., wide awake and in pain. It was the fourth straight night I had had hives and bad night sweats. They were getting worse with each evening, it seemed. I got up and headed to the bathroom just to see what I actually looked like vs. what I felt like.

Lips swollen, face fully broken out and hives covering my legs, arm and torso, I stood in the mirror in fear. Hoping that this was just from stress, but knowing it could easily have

NOVEMBER 2018 • A&U

been something much deeper going on. Yet, I still decided that I would wait one more night to see how I looked in the morning before deciding to “try” and find help.

That morning I woke up, and the hives were gone from everywhere except my top lip. I didn’t have insurance, so I knew I would have to find some other route of getting treatment. I first contacted the free clinic. I had actually done so via email two days before, but they finally got back to me that morning stating they didn’t have appointments available for fifteen days. I could also walk in on Wednesday but that wasn’t a guarantee that I would be seen. So that option was out.

I knew I was going to see my HIV doctor the next day, so I thought I could wait, but I also knew that my HIV care was just for that and he may not be able to write a script for anything different. Unfortunately, as a creative, I don’t have many options on being able to take days off when I am not feeling okay, so I still decided to head in to the consulting job I had. As I was walking I saw an “Urgent Care”—a set up for people needing care that may or may not have insurance or want to wait in an emergency room for hours.

I decided I would stop there for assistance.

With no insurance, the deductible was $99, which I luckily had. The services were basically à la carte from that point. The more you needed, the more you would pay. I was seen by a doctor who spent about fifteen minutes with me. She gave a pretty simple diagnosis and prescribed a week’s worth of meds. I went to the pharmacy, with no insurance again, but luckily, they had an Rx program I could use. My meds came to an additional $40 and I was sent on my way.

With the introduction of the Affordable Care Act, the number of uninsured African Americans has dropped from 18.9 percent to 11.7 percent. However, this is still higher than

whites and (7.5 percent) and Asian Americans (6.3 percent). Health disparity is also much higher in the African-American community, especially with HIV rates. According to a Center on Budget and Policy Priorities article “African American Uninsured Rate Dropped

by More Than a Third Under Affordable Care Act,” by Peggy Bailey et al, “The African American diagnosis rate for HIV of 60 per 100,000 is almost triple that of Hispanics (24 per 100,000), the second-highest group, and higher still than whites and Asian Americans, who tie for the lowest diagnosis rate (7 per 100,000).” Insurance should never be based on race and ethnicity, with so many suffering from HIV. This whole experience put a lot of things in perspective for me. How quickly things can go downhill when one doesn’t have insurance.

How hard it must be for those who don’t have over $100 in disposable income to make the decision to seek help or suffer in silence.

There are many more like me out there I know. I can only hope our healthcare system becomes one that is protecting the most marginalized people. I know one day I will be able to get insurance again. I can only hope that others will be as fortunate, and never have a day where they are unsure if they can care for themselves.

George M. Johnson is a journalist and activist.

He has written for Entertainment Tonight, Ebony, TheGrio, TeenVogue, NBC News, and several other major publications. Follow him on Facebook, Twitter, or Instagram @iamgmjohnson.

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PROMISE Advocate John Wikiera Made a Deal with God & Kept Up His End of the Bargain

by Lleda McCurty Photographed Exclusively for A&U by Scot Maitland

I

KEPT

f you need to cough, hold the pillow on your chest tube.”

“What?”

“If you need to cough hold the pillow on your chest tube. It will help so it doesn’t come loose.”

“I don’t have a chest tube.”

“Yes, you do. See the pillow underneath your arm? Lift it up.”

John slowly lifted up the pillow and saw a tube coming out of the side of his body traveling downward. The nurse then told him he had emergency surgery in his hospital bed to restore breathing due to PCP (now PJP) pneumonia. During his month-long hospital stay John recalls a doctor standing in his room telling him his test results came back positive.

John knew what that meant.

He was going to die.

It was September of 1992.

The year is now 2018. John Wikiera is not only alive, he thrives. Over the years John has kept busy. He has been a trainer and facilitator for self-empowerment, has served as a member of both the Consumer Advisory Board for Trillium Health in Rochester, New York, as well as the New York State Quality of Care Program, and the Drug Utilization Review Board for New York State Department of Health. He has earned a New York State Department of Health AIDS Institute Peer Certification, sits on the Peer Certification Review Board, and serves as a Peer Mentor at SUNY Upstate Medical University. John also chairs the Central New York HIV Care Network which hosts a World AIDS Day program each year, and he travels to Washington, DC, annually to advocate for change. This is only a partial list of his accomplishments.

In one of the rare moments John was not on the move, he sat down for this interview.

Lleda McCurty: When you were diagnosed in 1992, what was your initial reaction?

John Wikiera: I’m going to die, young, before my time. Because in the beginning being diagnosed meant you weren’t going to live much longer. The word “AIDS” had such a stigmatizing, horrible connotation of death. Back then you generally lived a year and a

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half, maybe two years after diagnosis. I believe there were only two medications that could only do so much because they didn’t have the third medication. Those meds weren’t stopping the virus like they do now.

What did you do next?

I kept trying.

What do you mean by that?

Most humans have a strong will to live. Mentally you may think it’s not worth it, but your body is still fighting to live.

When I was in the hospital, shortly after the surgery I saw a face appear on the wall. I recognized the face as my grandfather. It said, “It’s time to go with me.” I remember saying, “No. I have too much to do yet. I don’t want to go.” The face said, “You’ll be okay.

Don’t worry, it’s alright.” Then I woke up.

By the time I got out of the hospital I was frail, literally skin and bones. I had to slowly build up some strength.I did leave work which was one of the most devastating things because I thought that it was another step of losing everything. Around 1995, I started taking protease inhibitors.They were kind of the magic pill so to speak that helped a lot of people to get off their death bed, literally. I really wanted to live, but I kept waiting to die. I was like, six months has gone by, a year has gone by, a year and a half, I’m going to die at any time but haven’t yet. Little by little I started to go outside, get some exercise and fresh air. Then I started to get involved in my community.

Why? People kept telling me that other positive people were going to meetings and support groups, and I thought maybe I should. I started going to the CNY [Central New York] HIV Care Network.

There were LGBT church services in Utica, New York, that I would go to. I was finding community which I think is one of the keys to success in life no matter who you are, but especially if you are suffering with an illness. Socialization is one of the biggest factors for anyone. If you don’t feel like you’re a part of anything A&U • NOVEMBER 2018

you are not going to try as hard I think.

There have been family, friends, church, and clergy. A lot of people were a part of me getting back into life.

How do you continue to stay healthy?

In addition to staying involved in the community, adherence is key. When I first started, no one knew what they know now about the adherence. Not just medication adherence. My philosophy is adherence to your doctor appointments, proper rest, even nutrition. Those are all things that should be a part of your adherence. We know now if you take care of yourself, you can live a long time. I plan at least to live to be 100.

Why did you become an advocate?

It goes back to when I was diagnosed. I only told part of the story about the face on the wall. The other part is, I was wheeling and dealing with God. I was raised that you’re not supposed to but I said, “If you let me live, I will do what you need me to do for others.” After I started feeling better and got involved in my community, I took NOVEMBER 2018 • A&U

my first LTI (Leadership Training Institute) self-empowerment training. I didn’t feel like I belonged anywhere anymore. I didn’t know where my life was going or what to do next. I had prepared to die but now I had to learn how to live. I took the class

“I need to advocate for my blood brothers.” and it was one of the things that really gave me a jumpstart. I learned it’s not just about me. I need to advocate for, and this is a saying they use in the Philippines which I love, I need to advocate for my blood brothers. But I say for my blood brothers and sisters.

What would you say to encourage others to advocate?

I strongly believe if someone like myself is able to do it, I need to because there are those who are not able to advocate for themselves.

People are having a rough enough time dealing with an illness and doctor appointments and stigma and all this stuff. Others

may perceive them as being weak. I don’t mind stepping in. I think we have a responsibility to look out for each other. I think it’s the right thing to do. When you see stigma and discrimination happening you need to jump in. Especially with legislators and people in authority there are times when you do need to get a little boisterous. Some of the larger advocacy groups like ACT UP started this advocacy thing in NYC and went to great lengths and still do at times. Without them we may not be here because they really taught us how to do advocacy around HIV. Once you learn how to advocate, you can go to town on just about anything. You can do it. You can do what I’m doing. You just need to be shown what the tools are. One of the most gratifying things is to be helping someone else. Always ask yourself, how can I give back a little?

For more information about photographer Scot Maitland, log on to: www.scotmaitland.com.

Lleda McCurty is a freelance writer and bulldog-loving Southern girl. She currently lives in Central New York with her husband and works in HIV/AIDS healthcare.

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FIERCE INSPIRATION The HIV Book Project Celebrates Australia’s Long-Term HIV Survivors And Those Recently Diagnosed

by Hank Trout

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o corner of the planet was spared the ravages of the Plague Years, those horrible fifteen years from 1981 through 1996, when AIDS raged around the globe, uncontrolled, uncontrollable. Australia certainly was not spared. Although abc.net.au News reported on August 20, 2017, that “[t]he number of Australians being diagnosed with AIDS each year is now so small…the Australian Federation of AIDS Organisations have announced the age of the fatal syndrome over,” those folks who lived through the worst of the Plague Years in Australia and are still living with the virus might beg to differ.

Such folks as writer Phillip Shipton and photographer Roy Wilkins, and all the women and men who contributed to The HIV Book Project, a 140-page collaborative work documenting the lives of twenty HIV-positive people from a diverse range of backgrounds, using interviews by Shipton and photography by Wilkins to explore the realities of their living with the HIV virus since the 1980s. Completely peer-driven, the project was “conceived, coordinated, photographed and documented by HIV positive people,” a point of pride for Mr. Shipton.

“I tested HIV-positive on the 5th of June 1987, I was eighteen years old,” the writer told A&U. “HIV was devastating the gay community in Sydney and many people were scared to death of it, mainly because of a sensationalist government public service campaign called the ‘Grim Reaper’ campaign…I’d only had a few sexual encounters at this stage, one of which was not consensual, and I believe it was this instance in 1986 that I became infected as it involved blood….The reaper campaign and friends convinced me to have a test and to my surprise and dismay it came back HIV-positive.”

As did many young men newly diagnosed, Shipton began a downward spiral of “depression, shame, worthlessness and

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multiple suicide attempts.” Fortunately, he began volunteering with several volunteer groups in the HIV community, including the Bobby Goldsmith Foundation, the Gay and Lesbian Counselling Service, Support of Positive Youth and others; in 2016 he started volunteering with The Ankali Project, a publicly funded group that, since 1985, has trained and supported volunteers who provide emotional and social support for people living with HIV, many of whom are isolated in the community, subsist on welfare benefits, and in some cases have suffered multiple chronic illnesses or mental health issues. The name “Ankali” comes from an Aboriginal word for “friend.”

It was at The Ankali Project that Shipton met Roy Wilkins in 2016.

“Roy is an avid, enthusiastic and talented photographer. I asked him one day if he would be interested in an idea I had floating around in my head of photographing and interviewing HIV-positive people to get a contemporary view of HIV in the context of their experiences, to show people that living with HIV is now very different from the Grim Reaper days of death and illness. He said yes!”

Diagnosed as HIV-positive himself in 1984, Wilkins told A&U, “I was studying to be a Naturopath and Medical Herbalist, Homeopath, Clinical Nutritionist. I was specializing in HIV and was using myself to experiment on. I had broken out in a really bad red acne rash all over my face but still I studied on. I think that it was that fortitude that prolonged my survival. The positive attitude I had.” Unfortunately, Wilkins said, the diagnosis isolated him further from the gay community as “the Other,” leaving him with only a few straight friends and his boyfriend of twenty years. When Phillip mentioned putting together a book of photographs and interviews documenting people’s lives with HIV, A&U • NOVEMBER 2018

A&U Gallery

Yohann Warre De Joot, 2002, Circular Quay

Richard Watkins, diagnosed 2016, La Pero

Yasser Ibrahim, 2014, Auburn

Tobin Saunders, 1991, Darlinghurst NOVEMBER 2018 • A&U

Tash Lo, 2008, Randwick

Kevin Plumb, diagnosed 1987, Alexandria

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Roy Wilkins (left), 1982, and Phillip Shipton

“I said yes, we should do it. Suddenly I felt I had drunk rocket fuel because I had so much love and energy to accomplish this project.”

As the thirtieth anniversary of the World AIDS Day commemoration and the fortieth anniversary of the Sydney Mardi Gras both occur in 2018, to Shipton and Wilkins the book seemed like a timely artistic representation of the social history highlighting the significant changes that have occurred since the early days of HIV, its impact on their communities, and where they are today. They were right.

The two began work in earnest in March 2017. Shipton wrote “business, process, marketing, finance and other plans for the idea. I submitted it to my peers at the Ankali Project who reviewed it and generally agreed to support us….I set up a Facebook page, an email address, started printing fliers and distributing them to doctor surgeries, gay businesses and HIV-focused support services and organi-

30

sations around Sydney. It wasn’t long until we had our first applicant.” Shipton and Wilkins wanted the subjects of the book to come from backgrounds as diverse as possible to represent the broadest spectrum of people living with HIV in Australia, both long-term survivors and the newly diagnosed. At first, HIV-positive women were the most reluctant to come forward, but Shipton “was very lucky to meet two wonderful outgoing and inspiring HIV-positive women who feature prominently in the book, one of whom is on one of our three book covers.” Of the twenty subjects interviewed for the project, “One gentleman wanted to share his story with no photographs or identifying information. We agreed to do this as it represents the fear still evident in today’s society towards HIV-positive people,” Shipton told A&U. Most participants, however, “found the entire experience a cathartic one that helped them on their journey to come to terms with their own HIV diagnosis.”

Shipton interviewed all twenty subjects and then transcribed over 100,000 words from the tapes. He whittled that treasure trove down to 60,000 words; another editor cut the text down to its current 41,000 words. “Phill and l contacted each other constantly about the book design, color and whether we should have the images in black and white or color or a mix of color and black and white images, paper type, quality, dust cover design, cover design etc.,” Wilkins told A&U. “I was ecstatic in the realization that I was accomplishing my true heartfelt dream in helping others through my fine art photography and doing it selflessly as not-for-profit to help others.” With a Givenow fundraising campaign and the technical support of Positive Life NSW, an HIV advocacy group established in 1988, Shipton raised the necessary funds to self-publish the book. Although the book was finished and published in August 2018, the official launch date was October 2, 2018, A&U • NOVEMBER 2018

A&U Gallery

Zainab Alig Kahiye, 1998, Botanical Gardens

Dianne Nyoni, 2011, Marrickville with a concurrent photo exhibit that ran through October 16, 2018, at the Surrey Hills Neighbourhood Centre. Shipton and Wilkins have also finalized a deal to provide images and text for an exhibition displayed in hospital foyers that will showcase the imagery and stories from the book along with other HIV-related information, such as a timeline of HIV history.

For this writer, one of the most striking entries in the book is the interview of Tobin Saunders. With Robert Planter’s good looks, he is a performer, writer, choreographer, dancer, actor, DJ and events coordinator/producer from Ballina. For twenty-plus years he has been involved in theater works, production and performance at Mardi Gras, in fashion parades, and film.

He has also choreographed, hosted and performed numerous events in Sydney.

Diagnosed as HIV-positive in 1991, Saunders’ trajectory from terror-filled newly diagnosed patient to dedicated advocate is NOVEMBER 2018 • A&U

David Edwards (left), 2006, and Peter Barkla (2009)

one familiar to many of us. First came the shock and the fear (in 1991, AIDS was still a death sentence for many), then came the shame and being ostracized as “the Other,” then acceptance and the determination to prevail. Saunders has been through that wringer and come out stronger and more determined. “It’s not been a bed of roses.

I have lived with acute anxiety driven by being stigmatised as homosexual and then as someone with HIV. I probably had it when I was very young and got bullied by the big yobby boys at school who saw me as a target. But I also have this kind of ‘Fuck you! You’re not going to win!’ attitude.

I’m a bit of a fighter.” Like many of us, he has found contentment and happiness in a serodiscordant relationship. Also, like many of us, he proclaims that HIV has made him a stronger man. He brings that fighting spirit to his advocacy.

Readers who have read my writing in this magazine know how strongly, how ad-

amantly I feel the urgency for us survivors of HIV to tell our own stories, to record our own history, in our own words and on our own terms. The HIV Book Project has made an important contribution to that history. With photographic images and attention to our own words, Shipton and Wilkins have done an invaluable service to all of us who care about the accurate rendering of our history. I heartily applaud them for it.

If you are interested in purchasing a copy of The HIV Book Project from the Bookshop Darlington, please log on to: www.thebookshop.com.au/ new-releases/the-hiv-book-project-note-3-different-covers-to-select-from-see-below/.

For more information on The Ankali Project, please check out http://napwha.org.au/organisation/ankali. Information about Positive Life NWS is available at: www.positivelife.org.au/.

Hank Trout interviewed cabaret artist Russell Deason for the October issue.

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Until There’s A Cure Executive Director Nora Hanna Discusses the Past, Present & Future of the Foundation as It Turns Twenty-Five

Text and Photos by Alina Oswald

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bought my Until There’s A Cure bracelet some fifteen years ago. I had heard about it and always admired not only its design—a simple band with an (AIDS) ribbon engraved on it—but mostly its symbolism and impact on the ongoing fight against HIV and AIDS. To this day I believe that, although the bracelet itself, is an eye-catcher, it is the ribbon that truly grabs the attention. Some would admire my bracelet, while others would just stare at it with question marks in their eyes.

Few would actually ask questions and linger long enough to hear the full answer. And then one day, while attending a neighborhood gathering, I was pleasantly surprised to notice that one of my neighbors was also wearing the bracelet. That started a conversation right there and then, just between the two of us. I still wear the bracelet, as does that neighbor, as do many other people.

Ever since 1993, the Until There’s A Cure Foundation has used the bracelet to start—and then continue—a much-needed conversation about HIV and AIDS. This year, 2018, the foundation celebrates its twenty-fifth anniversary with a special, limited edition, rose gold version of the bracelet, and also various events spread throughout the year, including several local events—working with schools, trying to raise awareness and also

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funds—on (and around) December 1, World AIDS Day 2018.

As mentioned on the Until There’s A Cure website, “The original bracelet was designed by Isabella Geddes of Florence, Italy, in 1993 — a symbolic, simple, and elegant cuff-style bracelet. What distinguishes our Foundation from others seeking to help those affected by HIV/AIDS is that our primary source of financing for this effort is The Bracelet. In featuring The Bracelet, our

goals are to unite people around the world in promoting compassion, understanding, and responsibility, as well as increasing awareness.”

Until There’s A Cure Foundation uses the bracelet not only to raise awareness to combat HIV/AIDS-related stigma, but also to raise funds for the organization, in order to be able to continue the fight against the epidemic, explains Tony Beall, President and CEO of Mister Nonprofit Consultancy [A&U, March 2013].

“I’ve always been impressed with Until There’s A Cure [Foundation],” Beall says, “because, in my mind, they’re one of the first pioneers in the mission-based enterprise space that so many nonprofits, now, start looking to be a part of.” And he knows a thing or two about nonprofits…and not only. His company brings synergistic solutions to the nonprofit sector and helps nonprofits be the best that they can be for the communities that they serve; it also works with for-profit corporations interested in learning more about corporate social responsibility and getting socially engaged in the communities where their employees live.

Tony Beall has an Until There’s A Cure bracelet of his own. He’s met Nora Hanna, Executive Director of Until There’s A Cure Foundation through Timothy Ray Brown Foundation [A&U, October, 2016], and he “fell in love” with her passion for the mission of Until There’s A Cure. “I know that [A&U is] a dynamite publication that can help [tell] that story and I just did what Mister Nonprofit does, I just connected the dots,” says Beall, commenting on his role in helping spread the word about the twenty-fifth anniversary of Until There’s A Cure Foundation.

Over the years, the work and mission of Until There’s A Cure Foundation has attracted many celebrities—such as Alan Cumming A&U • NOVEMBER 2018

[A&U, January 2004], Michael Phelps, and Dwayne Johnson (aka “The Rock”), to mention only a few—who, in turn, have become Until There’s A Cure ambassadors.

“It helps that celebrities wear this bracelet,” Beall comments.

“Until There’s A Cure has been a pioneer in this space,” he reiterates, “and today it’s all about brand ambassadors or social influencers, [and] when they say ‘here’s a product for you,’ people flock to buy that product. So, I think there’s a lot of value and relevance in having brand ambassadors, because people will see [say] Alan Cumming wearing the bracelet and supporting its mission and they’re going to want to do that, too.” That said, “You don’t have to be a celebrity to be a brand ambassador,” Beall adds. “In the nonprofit space [for example], brand ambassadors are the folks who can really help deliver the mission, the value, and the relevance of the nonprofits in their community.”

Wearing the bracelet is important and can spread awareness in a couple of ways.

Wearing the bracelet financially supports Until There’s a Cure Foundation, so that it can further invest and find ways to serve the HIV/AIDS community. Not only that but the bracelet is a beautiful piece of jewelry, one that can start a conversation about HIV and AIDS. “The reality is [that] HIV hasn’t gone away,” Beall comments on the importance of still having that conversation. “In some communities it’s worse than ever because of the stigma that’s attached [to it]. I think stigma prevents a lot of folks from getting tested and reaching out for help.” Using the bracelet to start a conversation about HIV and AIDS helps raise and maintain awareness, makes people more comfortable talking about HIV and, in turn, it helps decrease the related stigma.

Nora Hanna, Executive Director of Until There’s A Cure Foundation, reiterates the NOVEMBER 2018 • A&U

necessity of still having that conversation, and still wearing the bracelet and using the bracelet as a conversation starter. Hanna has been with Until There’s a Cure for a decade and counting, but she’s been wearing the bracelet for almost as long as the foundation has been around. “I’ve been wearing the bracelet in honor of three of my best friends who have passed away.” She explains that she was flying overseas when she noticed the bracelet in a shop at the airport. “I thought, ‘what a wonderful idea,’ and I bought it, and I still own and still wear it.”

Earlier this year Until There’s A Cure Foundation marked its twenty-fifth celebration of partnership with the San Francisco Giants. “They were the first major league sports team to recognize that HIV was a problem in our community and have helped the foundation raise money and awareness for the past twenty-five years. We are very fortunate and very proud of our partnership with them,” Hanna says.

Having an iconic ball player or actor wearing the bracelet helps raise awareness about HIV and AIDS. “It helps diminish the stigma,” Hanna says. That is, it shows people that it is ok to wear the bracelet, to look at it, talk about it. “We’re very grateful for our partners in that regard,” she adds.

Echoing Tony Beall’s words, Nora Hanna adds her voice to remind that one doesn’t have to be a celebrity to make a difference.

Anybody can make a difference, become ambassadors, wear the bracelet and use it as a conversation starter, a conversation about HIV and AIDS. She encourages that conversation.

“I think we should keep talking about it,” Hanna says. “[HIV] is not the death sentence that it was in the eighties, [and those living with the virus are now] living and thriving, but we’re not done yet. We’re on the right path, but we’re not there yet. We need to move forward and to remind people that HIV is

still out there.” She adds, “The hardest thing for me is the complacency. I think that the biggest [problem] today is believing that HIV is not a problem anymore.”

When it comes to HIV, everybody has his or her own story to share, because HIV has touched everybody’s life. And yet, over the years, the focus of those stories has changed, if only ever so slightly, as has the face of the epidemic. With that, people’s perception of the epidemic, itself, has changed. The passing of time has also altered people’s views on the bracelet and its symbolism, as well as the conversations surrounding HIV and AIDS— from “death sentence” to surviving, from AZT to HAART then to undetectable and PrEP, from “getting to zero” to the hope of a possible AIDS cure in the not-so-distant future. And so, there’s a reason for people to continue wearing the bracelet and using it as a tool for communication.

“The bracelet is there to remember and honor the memory of all those who have gone before us,” Hanna comments. “We wear it today to support those who’re still continuing the fight and still looking for a cure.

“Along the way, there are social injustices that prevent people from getting their medications, [and so] we’re looking at social activism, making sure that our brothers and sisters are taken care of. [And] we try to keep up with what’s going on medically, and to inspire the next generation to get involved, hoping that there’s a generation out there that wants to help us find a cure by going into medical research or become activists, to become the next voice of this disease [so that] it’s not going to be forgotten.”

Learn more about Until There’s A Cure by visiting www.until.org. Find out more about Tony Beall and Mister Nonprofit Consultancy at www. misternonprofitconsultancy.com.

Alina Oswald is Arts Editor of A&U.

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A&U 's 17th Annual Holiday Gift Guide

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e were all raised on the adage that “It is better to give than to receive.” That is never truer than during the holiday season, when many of us search out gifts that do double duty—gifts that not only delight our friends and family who receive them but also raise important funds for various HIV/AIDS service organizations as well!

With this, our 17th Annual Holiday Gift Guide, we here at A&U have compiled an eclectic array of gifts, at a variety of price levels, that truly serve that kind of double duty. Some organizations returning to the Gift Guide this year, such as God’s Love We Deliver and Broadway Cares/Equity Fights AIDS; others are newcomers, like Visual AIDS and Adam’s Nest. Each of them offers unique gifts the recipients will cherish for a long time—from Wa gorgeous and festive tree ornament honoring Broadway diva Harvey Fierstein, to a 24-karat rose gold bracelet and other jewelry, to books and T-shirts and a celebrated cookbook and customizable greeting cards and the cutest little delivery truck piggy bank on the planet! And each of these groups uses the proceeds from these gifts to raise awareness about HIV/AIDS, to support essential ASO services such as delivering nutritious meals to those with HIV/AIDS, financing research for a cure, nurturing queer artists, and supporting groups like Planned Parenthood and The AIDS Memorial on Instagram.

So make your holiday spending mean something. Give friends and family these double-duty gifts that are sure to please them and equally sure to support good works in the HIV/AIDS community.

With our sincere best wishes, Happy Holidays to all of A&U’s readers!

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A&U • NOVEMBER 2018

Broadway Cares/Equity Fights AIDS

S

uppose you had to select another “Broadway Baby” to join Liza Minelli, Barbra Streisand, Julie Andrews, Gwen Verdon, Patti Lupone, Carol Burnett and others as the legendary star to be honored with an ornament in Broadway Cares/Equity Fights AIDS’ annual Broadway Legends series. The obvious choice—of course!—is the sensational Harvey Fierstein! Arrayed in stripes and glitter, Harvey’s Tony-winning Edna Turnblad from Hairspray becomes the eleventh ornament in BC/EFA’s Broadway Legends series, and the first male Broadway diva so honored, albeit dressed as a woman!

Tell Me More: Each of these finely detailed six-inch glass ornaments was designed exclusively for BC/EFA by Glen Hanson with the Christopher Radko Company.

How Much: $65.

How to Order: Log on to: http://broadwaycares.stores.yahoo.net/.

Check out the other unique holiday items available from the Broadway Cares Online Store, including the other ten Broadway Legends ornaments—including this year the Broadway Cares Collection 2018 Snow Globe, Broadway designer Walt Spangler’s festive new Snow Globe in which revelers create a giant snow man in the middle of Times Square, with more than twenty marquees from Broadway musicals share the stage, while the holiday classic “Winter Wonderland” plays when wound ($160)—and many other unique gifts for giving, all of which benefit BC/EFA. Who Benefits: Ever since 1988, BC/EFA has been the major funder of essential social service programs at The Actors Fund, including the HIV/ AIDS Initiative, the Phyllis Newman Women’s Health Initiative, and the Al Hirschfeld Free Health Clinic. BC/ EFA has also awarded annual grants to more than 450 AIDS and family service organizations nationwide over the years.

For more information, log on to: www. broadwaycares.org.

NOVEMBER 2018 • A&U

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Adam’s Nest

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dam’s Nest, a shop in the East End of Provincetown, Massachusetts, that offers “Art, Apparel, Jewelry & Whatnot” during the “season,” may not be the first place you think of for holiday gift shopping. However, the shop also runs an online store dedicated to the company’s founding principle of operating a business “with a purpose.”

Tell Me More: We got most excited about three T-shirts in particular, all modeled here by store owner Adam Singer.

First, The AIDS Memorial Short Sleeve T-shirt supporting Housing Works [A&U, March 2018], in collaboration with The AIDS Memorial on Instagram and designer Zach Grear. $10 from each sale will be donated to Housing Works to support its fight for funding and legislation to ensure that all people living with HIV/AIDS have access to quality housing, healthcare, HIV prevention, and treatment, and other lifesaving services.

Next is the Pink Pussycat Short Sleeve T-shirt supporting Planned Parenthood. Designer Brian Kenny created this cheeky graphic—a Pink Pussycat shown preaching peace! Ten percent of the proceeds from the Pink Pussycat T-shirt support the valuable work of Planned Parenthood, which is often the only source for HIV testing available in places such as rural Indiana and Texas.

And finally, with a nod to famed soft-core physique photographer and publisher Bob Mizer, The Bob Mizer Foundation and Adam’s Nest celebrate the relaunch of Physique Pictorial magazine with this tee featuring one of PP’s iconic “sailor” covers. Twenty-five percent of proceeds from the sale of these tees will be donated to the AIDS Support Group Cape Cod (ASGCC), www.asgcc.org.

How Much: Each of these T-shirts sells for $30.

How to Order: Log onto https://adamsnest.com any time for the store’s full catalogue and information on all the charities that Adam’s Nest’s sales benefit.

Who Benefits: Adam’s Nest gives monthly to GLAAD, the Trevor Project and Real Justice PAC and a variety of causes and individuals throughout the year. They sell a number of items with at least ten percent of the proceeds earmarked specifically for the following organizations: the Dream Corps, the Indivisible Fund, the ACLU, the Ali Forney Center, Gays Against Guns, Greenpeace, Planned Parenthood and the Rainbow Railroad. The items for sale in the collection indicate the respective charity that they support.

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God’s Love We Deliver

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od’s Love We Deliver is the New York City metro area’s leading provider of nutritious in-home meals for people living with HIV/AIDS and other life-threatening illnesses.

GLWD depends upon sales from their annual holiday catalog more than ever to fund their services. That catalogue offers perennial favorites, like their customizable greeting cards and their cookbook, as well as new items such as cookies, beaded bracelets and piggy banks. This year’s catalogue does not disappoint!

Tell Me More: For more than twenty-five years, “Chuck the Baker” has provided tasty sweet treats with each meal for GLWD. Now you can have Chuck’s Famous Double Chocolate Oatmeal Cookies (newly offered this year) or Chuck’s Famous Brownies any time. Chuck’s cookies and brownies contain no added preservatives; they are shipped within two to four days after you place your order and are best enjoyed upon delivery.

How Much: A box of six cookies costs $6.00. The brownies come in boxes of four, eight, twelve, and twenty-four and range in price from $19.00 to $75.00.

Tell Me More: Another of GLWD’s new offerings for 2018 is this charming Piggy Bank in the shape of one of GLWD’s delivery trucks with the iconic GLWD logo emblazoned on the side. Piggy Bank size: 5.5”H x 5”W x 5.5”L. How Much: $50.00 Tell Me More: A perennial favorite, God’s Love Cookbook: Nourishing Stories and Recipes from Notable Friends is a great gift for lifelong foodies and novice chefs alike. Compiled by Jon Gilman and Christopher Idone, with an introduction by Ina Garten (the “Barefoot Contessa”), contributors include Isabella Rossellini, Ina Garten, Danny Meyer, Michael Kors, Mario Batali, Meryl Streep, Stanley Tucci and many others.

How Much: $35.00 How to Order: All gifts featured here and many others (including GLWD’s customizable greeting cards) are available from GLWD’s catalogue store at www.glwd.org/store/catalog.jsp; the cookbook is also available at www.godslovecookbook.com.

Who Benefits: Tens of thousands of God’s Love We Deliver’s clients. Since its founding in 1986, GLWD has delivered nutritious meals to thousands of women and men too ill to cook for themselves. On September 28, 2017, GLWD delivered its twenty-millionth meal. According to their website, demand for GLWD’s services have risen more than 150 percent in the last ten years. Your gifts will help GLWD continue its invaluable work.

NOVEMBER 2018 • A&U

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Visual AIDS

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ince its inception in 1988, Visual AIDS has been at the forefront of organizations dedicated to seeking out, sponsoring, encouraging, nourishing and archiving works by queer artists, particularly works in response to the AIDS epidemic. Their exhibitions, events, publications, commissioned artist projects, and online Artist Registry help to keep the focus on HIV and AIDS, supporting HIV-positive artists and preserving the legacies of those artists lost to the epidemic. Sales from their online store make their work possible.

Tell Me More: At the Visual AIDS store at http://store.visualaids. org, you’ll find a wide array of genuinely unique gifts, from the very expensive (art photograph prints for $1,000 to $2,000), to the more moderately priced ($99 Limited Edition David Wojnarowicz T-Shirts

by LOEWE [A&U, July 2018]) to the much more affordable ($20 designer tote bags). We’ve chosen to highlight two of Visual AIDS’ new publications in their DUETS: In Conversation books, “DUETS: Nayland Blake and Justin Vivian Bond In Conversation on Jerome Caja.” Jerome Caja (1958–1995) was a visual artist, drag performer and provocateur in San Francisco. The new DUETS book presents artists Nayland Blake and Justin Vivian Bond in conversation reflecting on Caja’s influential life and legacy, his art, issues around AIDS and queer history, and the importance of preserving the legacies of artists like Caja, lost to AIDS. Alongside this title is “DUETS: Kia LaBeija & Julie Tolentino In Conversation.” The two trailblazers “come together for an intergenerational dialogue that illuminates their histories as artists and their relationships to HIV and AIDS spanning more than twenty years. From different perspectives, they discuss their shared practices as artists, performance makers, dancers, poets, and activists.”

How Much: “DUETS: In Conversation” books are all $10.

How to Order: Log on to http://store.visualaids.org for the complete Visual AIDS catalogue.

Who Benefits: We all do. Your gifts from Visual AIDS will further the fight against AIDS by provoking dialogue, supporting HIV-positive artists, and preserving our artistic legacy. Who Benefits: We all do. Your gifts from Visual AIDS will further the fight against AIDS by provoking dialogue, supporting HIV-positive artists, and preserving our artistic legacy.

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A&U A&U • NOVEMBER • OCTOBER 2018 2018

Until There’s A Cure

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or twenty-five years now, the folks at Until There’s a Cure have been raising awareness and funds to fight for a cure for HIV/AIDS. A national organization dedicated to eradicating HIV/AIDS by funding prevention education, care services, and vaccine development, and to increase public awareness of AIDS, UTAC uses The Bracelet as their primary fundraising tool.

The Bracelet is a symbol to unite people to fight HIV/AIDS by increasing consciousness, compassion, understanding, and responsibility.

It’s also quite a stylish statement of solidarity with PLWHA around the planet!

Tell Me More: To celebrate their twenty-five years of service, UTAC has introduced a 24-Karat Rose Gold edition of The Bracelet. Maintaining the original design, created in 1993 by Isabel Geddes of Florence, Italy, this cuff-style bracelet measures 1/4 inches wide and features a small, raised AIDS ribbon on the outside. The inside is inscribed with “Until There’s A Cure®.” The Bracelet is also available in 24-karat yellow gold, Sterling silver, silver-plated, stainless steel, and a graphite stainless steel.

How Much: The 24-Karat Rose Gold Bracelet sells for $150. UTAC offers other styles of jewelry (Red Ribbon pins, bracelets, earrings, necklaces) in their online store, ranging in price from $5 to $150.

How to Order: Log on to https://store.until. org/ for UTAC’s full catalogue of exclusive, exquisite jewelry.

Who Benefits: All sales benefit Until There’s a Cure. This non-profit organization pours 88 percent of its proceeds into innovative programs which promote HIV/AIDS awareness and prevention education, providing financial support for care and services for those living with AIDS, and supporting and advocating for HIV vaccine development.

OCTOBER 2018 NOVEMBER 2018• A&U • A&U

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MOVING IMAGES Writer & Producer Our Lady J Brings the Realities of the Trans Community to Television Audiences

by John Francis Leonard Photographed Exclusively for A&U by Sean Black

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ooking at the life of Our Lady J, it would be natural to assume that she’s led the charmed existence of the beautiful and accomplished. A prominent member of the trans community, she’s been a writer and producer for two critically-acclaimed hit television series: Amazon Prime’s Emmy Award-winning Transparent and this year’s breakout hit on FX, Pose. She’s also a classically trained concert pianist and recording artist who has played Carnegie Hall and for both the acclaimed Alvin Ailey American Dance Theatre and the American Ballet Theatre. Speaking to her by phone, I found her to be both incredibly poised and gracious, more gracious than any of the

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incredible subjects I’ve had the privilege of interviewing for a story. But speaking to her in depth, one realizes that that incredible confidence was not always with her and that her remarkable success was hard won.

Lady J was born in a village of 200 people in Pennsylvania—a village that even for its small size, had many divisions.

There were the Evangelicals, the secular, the Mennonites and the Amish. She says, “I couldn’t wait to get out. I didn’t see myself reflected anywhere neither in my village or in television or media.”

She knew she was trans from an early age, but she didn’t fully understand just what that was. She describes it herself by saying, “I didn’t know what the word trans was—I just knew that I enjoyed being a girl.”

It was a lonely and confusing time but did bring with it one great gift, the piano. Starting at an early age, initially as a means of escape from a world in which she was bullied and misunderstood for being femme, she lost herself in playing the piano. It turns out, as she herself puts it, “I was freakishly good at it.” Years of dedication to her art led her to a way out of her small town for her junior and senior years. She earned a scholarship to the prestigious Interlochen Arts Academy in northern Michigan. It changed Lady J’s world, to put it mildly. She found herself among like-minded people. The arts have long been a haven for the different, people who were artists were often LGBT, were often different, who were isolated from their peers. This welcome change of scenery came at fifteen, and she would spend her junior and senior years at Interlochen.

In 2000, like so many LGBT people, she felt the pull of the large, urban centers and made a move to New York City. Lady J found success there doing what she loved to do most, playing the piano in concert.

Even when she played Carnegie Hall however, all was not well; there was something elemental to her happiness and fulfillment missing—the puzzle was not complete.

As she puts it, “What I didn’t have were the tools for a fertile development of my identity. Music only took me so far; there was only so far I could go before I felt lost.” She wasn’t living her authentic life and, even though she was playing Carnegie Hall, even if she looked like a success from the outside, there was something

fundamental missing. She continues, “I was lost because I had so much confusion about my identity and so much confusion and shame about my trans identity. She started meeting other trans folk, others like herself, and she knew that this was who she was.

The impetus for change and her claiming of her identity came from a point of crisis. She received her diagnosis in 2004 at a point where, as she puts it, “I was a complete mess, I hadn’t been tested in over a year and was living in denial, from my gender to the state my life was really in.” This diagnosis served as her wake-up call. It was what she needed to turn her life around and claim her true identity. “I had so much fear to acknowledge my body and my trans-ness that I had completely let it go to waste and was very unhealthy,” she remembers. “But HIV woke me up.” She had 200 T cells and more than one opportunistic infection. She tells me, “My doctor was at St. Vincent’s and he told me that I was malnourished and that I wouldn’t make it if I didn’t change my life.” He gave her six months to a year if she didn’t. “I had to choose whether I was going to live or die. It would have been very easy to die at that point.”

She decided to stay alive. She went on meds and responded to them quickly— boosting her T cells and rendering her viral load undetectable. As I listen to her story, I’m struck at how frank and honest Lady J is about her life. There’s no selfpity here, no drama, just candor and the apparent fact that she’s now at peace with herself. She faced her demons and found support groups all over the city that supported that sobriety and others that helped her come to terms with her gender. She began to thrive and began her transition to the person she knew herself to be. As she puts it, “It was during that time of getting my life back into shape that I was honest with myself about my gender for the first time. I remember saying to a friend of mine—I said why not? Why not be the person that I was meant to be? It was within a year that I began transitioning.”

“I was a complete mess, I hadn’t been tested in over a year and was living in denial, from my gender to the state my life was really in.”

NOVEMBER 2018 • A&U

Through all of this, she managed to keep her music career going. But it was this final change, this final transition that put the brakes on that career. She lost a lot of work because she was trans. Shockingly, some of the resistance to her identity as a woman came from the LGBT community itself. Lady J recalls, “I’m an artist, so I’m constantly surrounded by LGBT people and yeah, I think a lot of the work that I lost in the classical world—those decisions were made by gay men.” Trans individuals are still seen as “less than” by far too many people in our community. She wasn’t thwarted, however. “All that mattered was that I was open to myself and that light that I found through rigorous honesty and the dedication to living my authentic life eventually was the light I needed to soar into the future that I live today. A successful, abundant, HIV-positive trans woman,” she says with evident pride. She was undetectable, healthy both physically and emotionally and it was time for a new opportunity as an artist.

That opportunity soon came calling in the form of a hit Amazon television series that followed the life of a middle-aged man coming to terms with being trans and embarking on her own transition. Lady J had hit a wall with her career as a pianist in 2013 with an album she had poured herself into but which just wasn’t a commercial success. The glass ceiling just wasn’t ready to be broken for a trans artist. But she noticed something happening in television with the actress Laverne Cox [A&U, June 2014], a close friend of many years now, starring in Orange is the New Black and gracing the cover of Time, as well as the new show Transparent on Amazon. Its creator, Jill Solloway, asked Lady J if she could write when both were in attendance at the GLAAD Awards. She thought, “Why not?” She had always written, journaling had been encouraged at Interlochen. She was encouraged to take her voice beyond playing music and to write lyrics, short stories, theater pieces, she had even written an opera when she was very young. She submitted a short story to the producers at Transparent and they asked her to take a screenplay workshop to see if it would be something she was good at.

She happened to be very good at it and soon joined their writing room as its first and only trans writer at the time, eventually being

“It was during that time of getting my life back into shape that I was honest with myself about my gender for the first time.”

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photos by JoJo Whilden/FX

named a producer. “It felt very easy,” she tells leads and Lady J is very proud of the writer’s really more proud of Pose than anything I’ve me now, “it felt natural—to take the shows done and I hope that everyone tunes in and room for saying yes to that. This compelling I had been doing as a singer-songwriter and finds inspiration.” and dynamic portrayal of a community that translate that into television.” She brought Our conversation soon turns to trans isthrived in spite of many obstacles has been her own experience as an HIV-positive trans sues in general as well as the current political a critically acclaimed hit and been renewed woman to the screen with the show’s breakclimate. As far as trans issues go, Lady J is for a second season. But Lady J notes that “[i] out character Shea, played by the incredible struggling with the medical community and t doesn’t seem like it’s an HIV-positive-cenTrace Lysette. In one episode drawn from the insurance companies catching up to the tered show—it’s a show about family, about Lady J’s own experience, Shea, a health issues trans people face. trans woman, is about to embark She is cognizant of the fact that on an intimate relationship with for her, the countless surgerthe show’s central character Josh, ies involved in her transition a cisgender straight male played haven’t been the issue that they

by Jay Duplass, but has to diswould have been for someone close her positive HIV status. It’s who’s not a writer and producer a tense, dramatic moment which on two hit television series. anyone who’s positive can relate She’s quick to point out, howto and both the writer and the ever, that the idea that being a actors illuminate it beautifully. trans woman is all about bottom She says now of this experience, surgery and taking hormones is “I felt like my voice was acceleratfalse. There’s a lot more to it in ed because of that. In a way it was her estimation. She can hardly a blessing to have that pressure count the surgeries she’s had to on me because I had to refine my align her body with her gender skills really fast. It was on the job and before any of these there training and the stakes were very was a need to come to terms high.” with her trans identity, for her With one acclaimed hit a long struggle. She’s currentseries under her belt, a new ly advocating with her own challenge presented itself. She insurance company to cover was approached by television the medical services needed by producer Ryan Murphy about trans individuals. joining the writer’s room at his Lady J and I end our incrednew FX series Pose. Both she and ible talk with her thoughts on renowned LGBT activist Janet the current political situation.

Mock were asked to come on She says it’s insanity and that board and punch up the pilot. at times she just doesn’t know Pose is a weekly drama which what to think but does say, “It’s centers on NYC’s ballroom scene important to not join the mass in the late eighties. Its incredihysteria because that just clouds ble cast features many talented, our judgment and gets us authentic trans actresses, over nowhere.” She leaves me with fifty in all, playing trans women some final words on this, words of the time struggling with many that had a deep affect on me. “I of the issues of the community. had a show in L.A., recently,” In addition to joining the writer’s she tells me, “I talked about this room, Lady J is a producer on the from the stage. Where I have show and her influence helps to commit to keeping my heart make the stories real and compelopen. And keeping my heart ling. She wanted to tackle HIV/ open in these political times AIDS head on; it was a defining feels dangerous and awful and issue for the trans community yet I have to do it every day. Othof the time. “I was proud that I erwise, I’ll go back to that place was able to use my own experiof fear and nothing comes from ence with these characters,” she that place.” Inspirational words proclaims. The numbers are for us all.

Top: Indya Moore as Angel; center: Mj Rodriguez as Blanca, astounding, with trans women fifty times more likely to be positive. Ryan Jamaal Swain as Damon; bottom: Mj Rodriguez, Domique Makeup by Cetine Dale • Hair by It’s criminal. The show’s main char- Jackson as Electra, Jason A. Rodriguez as Lemar Johnny Stuntz • Photo Assistant: acter Blanca, played with great heart Jessica Murray by actress Mj Rodriguez, is TV’s finding abundance in the world when the first trans woman of color living with HIV John Francis Leonard writes the column Bright world has no acceptance for you. So I’m in a lead role. Soon it became two positive Lights, Small City for A&U. NOVEMBER 2018 • A&U

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LifeGuide

Under One Roof

by

Mel Baker a connecticut lab strives for new ways to

treat hiv & prevention acquisition

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original master’s degree work in public health policy at George Washington University studying HIV and tuberculosis in the developing world, focusing on hard-hit Haiti. That work inspired him to go onto medical school to become an infectious disease specialist. “I developed a fascination for understanding HIV and how it infects a patient, but also understanding the life-cycle of the virus so we could develop new medications to treat HIV.” He’s since become an Associate Professor at Yale University’s School of Medicine and highly experienced HIV drug development specialist in the commercial sector.

Ever since Dr. Lataillade began studying the virus, the gold standard of treatment has been a three-drug regimen attacking two or three parts of the life-cycle of the virus.

Dr. Max Lataillade (top) and with the team at ViiV Healthcare (left)

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But that approach comes at a cost.

Beyond the numerous side effects and long-term damage to the body, Dr. Lataillade says the meds can also interfere with non-HIV medicines. “A lot of the patients that have been taking HIV drugs for a long time—such as the boosted protease inhibitors—have a lot of drug interactions with their blood pressure and lipid medicines and with hepatitis C treatments as well as rifampin, which is used to treat tuberculosis.”

Dr. Latailliade and his colleagues at ViiV believe that a good place to reduce toxicity and the cost of HIV treatment is to question the three-drug regimen “gold standard” to fight the virus.

Two Is Better “The thinking for us at ViiV is that if you can use two drugs vs. three drugs, you can use less drug vs. more drug with the same efficacy. The more drugs you use the more your liver and your mitochondria have to clear out of the system.”

As part of ViiV’s GEMINI trials, Dr. Latailiade says the integrase inhibitor (IINST) dolutegravir is a good choice to make a two-drug combo work. “We have a drug that is very potent in dolutegravir [as] we can use less drug vs. more drug to treat patients.”

A&U • NOVEMBER 2018

photos by Alan Brian Nilsen/ABN Photography

f we think of HIV as carrying a kind of a malware that takes over human T cells and turns them into a machine to create more copies of itself, then the goal has always been to try and cripple some part of the machine before it consumes the living immune system.

We can think of the early medicines such as AZT as doing little more than throwing sand in the gears, slowing the machine until it adapts and moves on.

In our analogy, other classes of HIV medicines might disable the gear shaft or the drive pistons, but it wasn’t until the viral machine was attacked on many fronts at once that the treatments we use today were able to halt the virus and allow the ravaged landscape of the immune system to recover.

But the war against HIV is never completely won.

Dr. Max Lataillade and the multi-discipline team at ViiV Healthcare’s Branford, Connecticut research facility have an ambitious agenda: They are working to find less toxic (HAART) drugs to fight HIV, to reduce the number of drugs used to treat most HIV patients and to make it easier to take medicine to fight the virus and prevent infection (PrEP). They are also introducing a new drug class that will help patients who are no longer responding to the current medicines.

Dr. Lataillade is the Vice President and head of clinical development at ViiV Healthcare and has been studying the HIV machine for most of his career. He did his

Dolutegravir was approved last year for use with the second generation non-nucleoside reverse transcriptase inhibitor (NNRTI) rilpivirine, marketed as Juluca.

Following a successful Phase III study, ViiV filed last month for FDA approval of a drug formulation combining dolutegravir with a much older, but low toxicity (NNRTI) lamivudine also known as 3TC. Dr. Lataillade says a head-to-head comparison study of their two drug combination of 3TC and dolutegravir vs. a threedrug regimen that added nucleotide analog reverse-transcriptase inhibitor (NtRTI) tenofovir was promising.

Dream Lab The ViiV lab has been making rapid progress on several fronts because it operates as an all-in-one research and development shop funded by GlaxoSmithKline, Pfizer and Shionogi. All three companies transferred their HIV research and drug patents to ViiV Healthcare in 2009.

Most pharmaceutical companies have the people making new discoveries for potential treatments separate from the early development groups. Dr. Lataillade says they have all of those people under one roof in their Connecticut lab. “We have our chemists, biologists, synthetic chemists all working in the same building; we can talk the same language. We can take a drug from this early discovery stage and start to run with it into the development stage. It increases what we like to call the ‘speed to patient’ strategy.”

Intramuscular ATLAS ViiV is also placing a big bet on replacing daily pill regimes, with “Antiretroviral Therapy as Long-Acting Suppression” (ATLAS), a once-a-month intramuscular injection given by a health provider.

Dr. Lataillade noted,“I think this sort of long-acting formulation improving convenience is something we are going to NOVEMBER 2018 • A&U

see more of.”

The company has two Phase III ATLAS trials that have been underway for several years. One combines two drugs; the integrase inhibitor (INSTI) cabotegravir and the (NNRTI) rilpivirine. That combination is being tested on people who are already infected. Another injectable trial using just cabotegravir is being tested as a PrEP drug to prevent infection.

Both approaches could be a game changer for many patients.

For those with the virus, it would reduce the threat of viral resistance if they miss daily doses of their medicine.

For those on PrEP, getting an injectable once a month would be far easier than remembering to take a pill every day, when the prospect of becoming HIV-positive is only a seemingly remote possibility, instead of the reality of illness faced by those already infected Dr. Lataillade says while the current injectable trials focus on once a month injections, it is theoretically possible to extend that time frame. “We will try to push the envelope even more to make it once every two months or potentially every three months.”

Helping Those Running Out of Time Refining current drugs and delivering them in novel ways isn’t the only thing on ViiV’s agenda. Dr. Lataillade is especially bullish on their new drug fostemsavir, an attachment inhibitor that would prevent HIV from connecting with the gp120 protein on the surface of the virus which acts as the gateway for HIV to gain access to the T cell and hijack it.

“Once fostemsavir binds with the gp120 protein it keeps it in a conformational state, that does not allow it to bind to the CD4 cells.”

Unlike other drugs that attack parts of the life-cycle of the virus once it is in a T cell, this drug would act as glue in the lock of still healthy T cells preventing HIV from getting

Branford, Connecticut lab, ViiV Healthcare

a foothold in the body.

It could be an ideal drug for PrEP therapy, standing in for a fully effective HIV vaccine that continues to remain elusive.

As a treatment, it could potentially be far less toxic than other drugs, because it works directly on the virus, not the immune cell host. Protease inhibitors, for instance, can affect other healthy protease related functions in the body, leading to side effects.

Attachment inhibitors like fostemsavir could also be a godsend to patients whose virus has become resistant to other therapies, providing another drug to bring the rampaging viral machine under control. Fostemsavir is in a Phase III clinical trial.

ViiV is also working on another drug that would make any viral particles produced by a hijacked T cell incapable of infecting other cells. The maturation inhibitor has yet to enter human trials.

Returning to our analogy of HIV as zombie machine, we are reminded that the current treatments haven’t removed the deadly virus from the body; it can be brought to a standstill, but only as long as it remains under constant attack. The ongoing war between drug and virus takes its toll on the land upon which the battle is fought: the human body.

Anything ViiV and other HIV labs around the world can do to find treatments that reduce the collateral damage from the weapons used to fight HIV, can only be to the good of those who are infected, those who will become infected and hopefully the many who will be protected from HIV. Mel Baker is a broadcast journalist and former LGBT and anti-nuclear weapons activist. He is married to artist Leslie Aguilar and lives in San Francisco, California.

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LifeGuide

Stopping Injustice

by

Hank Trout leading hiv scientists issue expert con-

sensus statement on hiv criminalization

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and medical evidence regarding HIV and its treatment; instead, these prosecutions have reflected the persistent societal stigma and fear associated with HIV. Prosecutions have occurred even in instances where no harm was intended, where HIV transmission did not occur, where transmission was not possible or was extremely unlikely, and where transmission was neither alleged nor proven (prosecutions based solely on nondisclosure).

The ECS addresses the factors influencing transmission risk associated with particular acts, the importance of proving transmission, and the harmfulness of HIV, noting that “persistent misconceptions exaggerating the harms of HIV infection appear to influence application of the criminal law.” The authors emphasize that their purpose is to assist those providing expert opinion evidence in individual criminal cases, and that the ECS is “not intended as a public health document to inform HIV prevention, treatment and care messaging or programming.”

In an editorial accompanying the ECS, JIAS Editor-in-Chief Kenneth Mayer and colleagues wrote, “[S]pecific laws focusing on HIV criminalization, and misuse of other laws, despite the evidence against the likelihood of HIV transmission, reflect

the perpetuation of ignorance, irrational fear and stigmatization…We therefore hope that governmental authorities will view this Expert Consensus Statement as a resource to better understand the actual rather than the perceived risks posed by exposures to individuals living with HIV, and to create societies that encourage engagement and not fear.”

Ken Pinkela [A&U, October 2016], an advocate for justice for those wrongly criminalized for being HIV-positive, knows too well the absurdity of criminalization, as it destroyed his sterling military career.

Erroneously convicted of having had sex with another officer without disclosing his serostatus (no sex act occurred), Ken has fought for six years to get his conviction overturned and his pension and other benefits restored—to no avail, despite the sole witness’s having recanted his story.

After attending IAS2018 in Amsterdam, Ken told A&U, “I am very excited about the timing of the release [of the ECS]. The personal and community impact stems from the power of the authors and the medical community standing up to the prejudice and ignorance of HIV criminalization. The language on phylogenetics and the facts on risk of transmission are now laid out and can be used by advocates all around the continued on page 54 A&U • NOVEMBER 2018

illustration by Timothy J. Haines

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t the recent IAS2018 conference in Amsterdam, The Netherlands, twenty of the world’s leading HIV scientists published the Expert Consensus Statement on the science of HIV in the context of criminal law.

The Expert Consensus Statement (ECS), released at IAS2018 and simultaneously published in the Journal of the International AIDS Society on July 25, 2018, is based upon current scientific evidence regarding HIV transmission, exposure, and non-disclosure. These experts, from various regions of the world, including a Nobel Laureate and other leading global scientists with expertise in research, epidemiology and patient care, performed a detailed analysis of the best available scientific and medical research data on HIV transmission, treatment effectiveness, and forensic phylogenetic evidence.

Emphasizing science over stigma, the ECS advises governments and those in legal and judicial systems to take heed of the significant advances in HIV science since the beginning of the pandemic and to apply current scientific knowledge to the law in cases related to HIV. According to statements released by the International AIDS Society, the ECS stresses that: (1) there is no possibility of HIV transmission via contact with the saliva of an HIV-positive person, including through kissing, biting or spiting; (2) the risk of transmission from a single act of unprotected sex is miniscule and reduces to zero risk during vaginal or anal sex when the HIV-positive partner has an undetectable viral load (“U=U”); and (3) it is impossible to establish proof of HIV transmission from one individual to another, even with the most advanced scientific tools. These factors argue strongly in favor of decriminalizing HIV. Currently, some sixty-eight countries criminalize HIV nondisclosure, exposure, or transmission. Prosecutions have been based upon the perceived risk of HIV transmission associated with sexual activity, but prosecutions have also occurred for acts such as biting and spitting. These laws and prosecutions have ignored the best available scientific

Harold Matzner

Helene Galen & Jamie Kabler Donna MacMillan

OCTOBER 2018 • A&U

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LifeGuide

What We Need

by

Hank Trout results of the “work, financial stability,

and aging with hiv/aids” survey

50

with HIV/AIDS” survey, while limited in scope (seventy-seven respondents to the survey posted on Facebook), revealed that more than fifty percent of respondents live on SSDI; that only sixteen percent were continuing to work on SSDI; that only 40.3 percent considered their financial status “stable” while 28.6 percent considered theirs to be “declining”; and that their other major concerns regard long-term senior care (71.1 percent), housing stability (43.4 percent), medical and prescription insurance coverage (38.2 percent), and food security (34.2 perecent).

Smith emphasized that for PLWHA, “Housing stability and income security are critical to the success of the medical model.”

Stabilizing financial security becomes even more important as PLWHAs age. Toward that goal, among the recommendations presented at USCA2018 were (1) a simple, concise, user-friendly website and mobile application that provides accurate information and resources on aging and age-related topics; (2) training and education for users and service providers; and (3) a resource directory of related federal, state, and local programs and agencies.

The information garnered from Smith’s efforts will be used to update the Phoenix Rising HIV/AIDS Re-entry Project website, which is being redesigned, “a Phoenix Rising 2.0, twenty years later, what is still relevant

and if anything is new,” Smith said. Phoenix Rising fosters independence, empowerment, and self-sufficiency for both those who are newly diagnosed and those who have lived with HIV for years. The project was created in 1997 in response to the advent of HAART medications and other life-prolonging advances which, for many, changed living with HIV from a terminal diagnosis to a chronic illness. As many people living with AIDS began feeling better and started preparing to live rather than to die, the need for financial planning and other preparation arose. Phoenix Rising enables PLWHAs with disabilities to assess whether they are ready to return to work or school, how to plan and implement that return, and how to return to work without jeopardizing SSDI and/or other benefits. The project also familiarizes clients with laws that protect people with disabilities against employment discrimination as well as money-management strategies to help navigate the expense of aging with HIV. Further information about the Phoenix Rising HIV/ AIDS Re-entry Project can be found at www.phoenixrisingreentry.org. Additional information regarding NMAC’s mini-grants can be found by logging onto NMAC’s website at http://www.nmac.org.

Hank Trout writes the For the Long Run column for A&U. A&U • NOVEMBER 2018

illustration by Timothy J. Haines

O

n November 13, 2017, NMAC (formerly National Minority AIDS Council) announced the recipients of the 2017 HIV 50+ Strong & Healthy Mini-Grant Program. The yearly mini-grant program allows the group’s HIV 50+ scholars to develop and implement a project to educate and engage HIV 50+ community members. Fourteen grantees were awarded up to $2,500 in the categories of community education, community outreach, and community engagement in their particular areas. Each grantee is affiliated with an organization that acts as the fiscal sponsor for the grant. Some grantees chose to coordinate social events, daylong conferences, and other information-gathering programs.

One grantee, Michael G. Smith of Santa Fe, New Mexico, designed a survey on “Work, Financial Stability, and Aging with HIV/AIDS.” Smith told A&U, “I chose to use the funds to conduct a survey and to do focus groups here in New Mexico and two in San Francisco to look more deeply into work and financial security and aging with HIV.” The results of those focus groups and survey were presented at a workshop at USCA2018 in Orlando, Florida, in September.

Six focus groups were held in New Mexico and San Francisco with PLWH/A and service providers. The PLWH/A focus groups revealed that finances and work-related issues are a tremendous source of stress and anxiety for participants. Many expressed being tired of living in poverty and confused about which benefits are available to them and who provides them. Most participants who are living on Social Security Disability Insurance did not know about or understand about Social Security Work Incentives and feared losing benefits if they work. This confusion was attributed partially to misinformation regarding working and the effects of earnings on benefits, no clear understanding of how to continue working while on disability, mixed or incorrect messages about working from service providers, and a “mistrust of systems.” Most also indicated wanting to be more self-confident and self-sufficient and to decrease their dependence on others and/or “the system,” wanting to be more productive and engaged in their community.

The “Work, Financial Stability, and Aging

E R U T CUL S THE

D I A OF

FILM

1985

Written & Directed by Yen Tan MuseLessMime Productions/ Cranium Entertainment

1985

is a film about secrets—the secrets we think we’re hiding, but are only too often known by our families and those closest to us.

Shot with great effect in 16mm black and white, it’s the story of a young, closeted, New York City advertising professional returning home to Texas for a holiday visit after many years away. Adrian, played sensitively by Cory Michael Smith, visits his fundamentalist Christian family under the weight of some heavy burdens. He is hiding both his sexuality and his struggles with the decimation AIDS has wrought on New York’s gay community. Tan has written and directed this film with great subtlety, not all is revealed initially—he allows things to play out gradually and there are surprises in store. Adrian skirts close to the truth, but his parents, played by esteemed actors Virginia Madsen and Michael Chiklis know more than he thinks.

Parents so often do in these situations.

The most touching of his relationships is a budding closeness with his young brother, played by the brilliant actor Aidan Langford.

I initially thought the 16mm format would be limiting, but Tan makes brilliant use of it, allowing the small frame to highlight the emotion in the faces of this talented ensemble. In a wide shot, we see Adrian walking the family dog, just a small dark silhouette in the lower right hand corner with power lines highlighting a dra-

52

matic cloud-filled Texas sky. He then cuts close to Adrian’s face, sobbing and profuse with tears, overwhelmed by the secrets he’s hiding. This incredible film builds gradually to its touching denouement with each parent letting him know, indirectly and directly, that his secrets aren’t as well kept as he thinks. Madsen and Chiklis deliver masterful performances in each of these encounters with the subtlety and emotion unique to actors of their long experience. There isn’t a bad performance or a false note in this remarkable and powerful film. It’s a joy to watch and will bring more than a few tears to one’s eyes.

—John Francis Leonard

BOOKS

Capture Theory

by Joy Gaines-Friedler Kelsay Books

I

was sure there was some kind of myth or folktale I could mine for metaphors about birds. Don’t birds signal a thing?

Aren’t they harbingers? But after some cursory Internet-ing I couldn’t find what I thought I’d find. Maybe birds only call out to me at an archetypical level.There are A&U • NOVEMBER 2018

a lot of birds in Joy Gaines-Friedler’s latest book of poems: Capture Theory; from the chickadee in the first poem “Touch,” to the cormorant in the closing poem, “Over the Rainbow.” So many birds in fact that I can’t stop thinking about them. And when I consider birds and Gaines-Friedler’s book I’m reminded of something called the Evening Chorus. Similar but not as energetic as the Sunrise Chorus—and fairly easy to imagine—the Evening Chorus coincides with that transitional time of day when birds go about their business of eating and finding mates and calling out the news of the day. Capture Theory sounds to me like that melodious kind of news.

Gaines-Friedler’s poems come out of a transitional time. Early in the collection we are there as the speaker watches her mother after the death of her father (“Counting Change”). And then, throughout, the poet recounts the mother’s decline in poems like: “Dementia” and “Lack of Memory Floor.” And so the collection creates a kind of liminal space full of grief and also a sad anticipation. Maybe the same way the light changes almost melancholic at the end of the day is weirdly juxtaposed by the full-throated call of birds: finches, chickadees, cormorants, herons, night birds. Gaines-Friedler’s poems capture a complicated mood of something leaving but also something coming; something darker but with a promised light that follows. Gloaming.

This twilit book zeroes in on the peculiar transition that occurs when the child becomes the parent: the voice in poems taking on the role of caregiver to the aging mother (“Trying to Figure out My Mother’s Medicare Plan”). This experience seems to find its voice in the poems connected to the collection’s title: Capture Theory. In these poems, the speaker contends with herself in relation to the mother: “I can’t explain why I threw her letter out” and “Forgiveness, forgive me.” But it’s in “Teaching Young Adults ‘At Risk’” that the poet reveals Capture Theory’s center. It is in this poem that we are instructed about various ideas of how the moon came to circle the NOVEMBER 2018 • A&U

earth. It is difficult not to hear various ways to describe the changing relationship between a parent and child: “Impact Theory… an off-center collision”; “Fission Theory… once a part of us. It broke away.”; and “Capture Theory… the moon formed elsewhere.” Gaines-Friedler deftly explores the ways the moon might have come to be paired with the earth in the same way that a child and a parent can move through various kinds of connections—bodies circling bodies.

Into this liminal space—with shifting light: “what the sky had been an hour ago,” flitting birds: “criss-crossing a random, unregulated plan,” the moon appearing: “Dean Martin singing, That’s Amore”—Gaines-Friedler inserts the indisputable solidity of the human body.

Again and again the human body itself returns in poems as a kind of bedrock.

Among the poems where a speaker changes places with her parent, where a child works to decipher the code between herself and her mother, there is a poet awake inside a body, remembering. Even

in its mortality the body “finds a way to breathe.” Here, I am thinking of poems like: the AIDS elegy “When the World Converted to Acronyms”; the pragmatic “Refusing to Ride the Creator” where the speaker avoids a rollercoaster’s risk with, “I’m not brave. Not about this”; and where the speaker’s determination is revealed in “Home Repair” with “pantry door keeps falling off its hinges. I repair it. I’ll repair it again.” The body remembered and the body resolute.

I think I’m slightly misremembering the Norse legend of the two ravens: Huginn and Muninn, Thought and Memory. It was said in legends that they flew the world and returned to report back news to Odin. My faintly remembered bird myth doesn’t have the weight of Norse mythology. The mythic birds I’m thinking of carried news but also appeared at crucial times, at shifting moments. Maybe birds have so often been shown as heralds that I can’t help but read them this way in Joy Gaines-Friedler’s new collection. The poems in Capture Theory read like messages sent from between stations—a voice making its way from one point in a life to the next. These are remembrances and work done to put affairs in order along with poems of delight and discovery.

“On your way about your life, at the mailbox or a stop light, your body remembers” one poem announces; in another, “We’ve lived through the dying.” I look forward to what comes next.

—Noah Stetzer John Francis Leonard writes the monthly column Bright Lights, Big City for A&U. Noah Stetzer is the author of Because I Can See Needing a Knife, a collection of poems published in 2016 by Red Bird Chapbooks. His work has received the 2015 Christopher Hewitt Award for Poetry and the 39th New Millennium Award for Poetry. Noah’s poems have appeared in the New England Review, Nimrod International Journal of Prose & Poetry, Green Mountains Review, and Bellevue Literary Review. He is a 2014 Fellow from the Lambda Literary Retreat and a current work-study scholar at the Bread Loaf Writer’s Conference. Born and raised in Pittsburgh, Pennsylvania, Noah now lives in Kansas City and can be found online at www. noahstetzer.com.

53

E

Positive Justice

continued from page 48

ach summer, One Heartland welcomes more than 600 young people to camp for a week of play to build skills, confidence, and friendships. The camp is open to youths living with or affected by HIV/ AIDS, experiencing homelessness, in the LGBTQ+ community, or working towards a healthier lifestyle.

To raise funds for the camps, One Heartland sponsors Holiday in the Heartland, a very popular annual event. Organizers hope that this year’s two-night event on Saturday and Sunday, December 8 and 9, at the Dakota Jazz Club in Minneapolis, Minnesota (1010 Nicollet Mall), will raise tens of thousands of dollars to support next summers’ camps. Each evening will feature a special musical guest (including Har Mar Superstar, a popular local musician), a jazz program, silent and live auctions, and pre-

world fighting HIV criminalization.”

The ECS is significant for its global reach and its recognition of the impact which ignoring current HIV science can have on individuals wrongly prosecuted.

It is an important step in the campaign to ensure that people living with HIV are treated fairly in criminal justice systems around the world. The ECS concludes, “Given the evidence presented in this document, we strongly recommend that more caution be exercised when considering criminal prosecution, including careful appraisal of current scientific evidence on HIV-related risks and harms.

This is instrumental to reduce stigma and discrimination and to avoid miscarriages of justice.”

In addition to the twenty experts who authored the Expert Consensus Statement, the ECS has been endorsed by International AIDS Society, the International Association of Providers of AIDS Care, and the Joint United Nations Programme on HIV/AIDS. In an email to A&U, Peter Perkowski, the Legal Director for OutServe-SLDN, which assists the LGBT military community—including active-duty servicemembers, veterans, and Department of Defense civilians and those living with

54

sentation of the annual One Heartland Heart of Hope Award. General admission tickets are $35; VIP tickets, which include dinner and a “special gift,” are $150.

At the camps, One Heartland offers activities for recreation, (canoeing, fishing, archery), education (cooking, interview skills, healthy relationships), and healing (animal therapy, art and music therapy). These activities create opportunities for the children to form bonds with peers who are in similar life situations. They often create memories and a support network of lifelong friends. Nearly seventy-five percent of One Heartland’s campers are youth of color; seventy-five percent of their families live at or below the federal poverty level. Many families pay nothing at all for a week of camp.

One Heartland also arranges and covers the cost of travel to and from camp, and provides clothing, toiletries, and other supplies to campers in need.

For more information, log on to: www.oneheartland.org. You may also donate to One Heartland on their website.

HIV—cautions that “[i]n the military context…prosecutors (Trial Counsel) typically charge everything they can, and they have been resistant to arguments that they should not charge activity that poses no risk of exposure to or transmission of HIV. Military regulations criminalize the failure to disclose HIV status before engaging in sexual activity, as well as the failure to use condoms during sex, and neither offense depends on or even considers the risk of transmission. Unfortunately, I don’t see the Consensus Statement affecting the charging decisions of Trial Counsel—or for that matter military judges, who routinely deny motions to dismiss charges even when the activity carried no risk of transmission. Our hope, to be frank, has been with the juries, who on occasion have been smart enough to acquit on some of the most serious crimes when presented with testimony that there was zero risk to the complaining witness.”

Mr. Perkowski continued, “For the same reason, I don’t see the Consensus Statement resulting in prior convictions being overturned. But [it] may assist us… with clemency petitions to the Boards for Correction of Military/Naval Records. We hope that, when presented with this new scientific evidence, the BCM/NRs will

grant clemency to veterans convicted for HIV-related crimes. We also hope that the Consensus Statement will prompt the Pentagon and the service Branches to take a hard look at their HIV-related regulations, which are long overdue for an overhaul to reflect the current state of HIV medical science.”

On a much more encouraging note, after a six-year battle with the US Army, on August 4, 2018 Ken Pinkela’s veteran’s disability rating from post-Gulf War combat injuries was approved and activated.

He had previously lost all of his benefits through HIV criminalization in the US Army. He told A&U, “I’ve never been so grateful for previous service-related injuries that later on in life would aid the approval of my full medical benefits denied after being wrongfully criminalized for living with HIV.” Further information can be found in NAM AIDSmap’s reporting at www.aidsmap.com; you can read the complete Expert Consensus Statement in the Journal of the International AIDS Society at https://onlinelibrary.wiley.com/doi/full/10.1002/ jia2.25161. Further information about OutServe can be found at www.outserv.org.

Hank Trout interviewed cabaret artist Russell Deason for this issue.

A&U • NOVEMBER 2018

photos courtesy One Heartland

A Calendar of Events

NOVEMBER 2018 • A&U

55

Survival Guide

[a portrait by sean black]

“Sixty-six years old and thirty-one years positive!

Living nearly half my life with HIV has been brutal, yet empowering thanks to love, holding on and allowing myself to let go. I focus on building up and supporting many others I dearly love.

I’ve always lived half in and out with HIV. Recently I realized that now I had the courage to become the person I always wanted to be. Coming out to be seen is the only way stigma will change!”

—Kevin Kelland

Kevin lives in Plymouth in the southwest U.K. with his very supportive husband Steve of thirteen years. A professional photographer most of his life, he now uses the camera to document his own story and to share the stories of others via social media in the face of diminishing HIV support groups. He is a member of the U.K.’s National Long Term Survivors Group.

Sean Black is a Senior Editor of A&U.

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A&U • NOVEMBER 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 © 2015 Gilead Sciences, Inc. All rights reserved. UNBC1856 03/15

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 didn’t cause the clogged artery in my neck.

Smoking with HIV did.

Brian, age 45, California