A&U April 2019

APRIL 2019 • ISSUE 294 • AMERICA’S AIDS MAGAZINE

WRITING

LIFE

Writers Erin Allday, Shaun David Hutchinson & Chuck Forester Create Stories About Survival

plus

•Artist Lola Flash •Fiction by Geer Austin •Candy Samples Wants Us to Use Our Powers for Good •A Tribute to Patricia Nell Warren

EVVIE McKinney The Winner of The Four Sings Out for HIV Care

IMPORTANT FACTS FOR BIKTARVY®

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

(bik-TAR-vee)

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including:

BIKTARVY may cause serious side effects, including: } Those in the “Most Important Information About BIKTARVY” section. } Changes in your immune system. Your immune system may get stronger and begin to fight infections.

Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY. } Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY. } Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. } Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. } The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).

} Worsening of Hepatitis B (HBV) infection. If you

have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to check your health regularly for several months.

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

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

BEFORE TAKING BIKTARVY Tell your healthcare provider if you: } Have or have had any kidney or liver problems,

These are not all the possible side effects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY.

including hepatitis infection. } Have any other health problems. } Are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby.

Tell your healthcare provider if you become pregnant while taking BIKTARVY. } Are breastfeeding (nursing) or plan to breastfeed.

Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

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

Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.

HOW TO TAKE BIKTARVY

Tell your healthcare provider about all the medicines you take:

Take BIKTARVY 1 time each day with or without food.

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

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

} BIKTARVY and other medicines may affect each other.

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

Get HIV support by downloading a free app at

MyDailyCharge.com

GET MORE INFORMATION } This is only a brief summary of important information

about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.

} Go to BIKTARVY.com or call 1-800-GILEAD-5. } If you need help paying for your medicine,

visit BIKTARVY.com for program information.

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

Version date: December 2018 © 2019 Gilead Sciences, Inc. All rights reserved. BVYC0102 01/19

KEEP PUSHING.

Because HIV doesn’t change who you are.

BIKTARVY® is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in certain adults. BIKTARVY does not cure HIV-1 or AIDS.

Ask your healthcare provider if BIKTARVY is right for you.

To learn more, visit BIKTARVY.com.

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

c o n t e n t s April 2019

34 Cover Singer & Winner of The Four Evvie McKinney Talks with Candace Y.A. Montague About Faith, Family, Women’s Empowerment and Lifting Her Voice in Support of the Black AIDS Institute

Departments

Features 24 Gallery Photographer Lola Flash Creates Images to Counter Cultural Erasure 28 Connecting Our Stories Journalist Erin Allday Revisits Her Groundbreaking Article About Long-Term Survivors 30 Sex Is Our Birthright Chuck Forester Creates a Portrait of the Early Epidemic in His New Novel, Eat, Sleep, Love 38 I Am Not Anyone’s Metaphor Writer Shaun David Hutchinson Advocates for Mental Health, Especially Among His Target Audience—Young Adults 48 Fiction Russell by Geer Austin

cover photo by Sean Black

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Frontdesk

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Digital Footprints

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Tribute: Patricia Nell Warren

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NewsBreak

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Ruby’s Rap Ruby raps with advocate Bobbee Trans Mooremon

viewfinder 17 Bright Lights, Small City 18

Brave New World

19

Just*in Time

21

For the Long Run

22

Powers for Good

lifeguide 42

Money Matters

43

Hep Talk

44

Destination: Cure

45

The Culture of AIDS

46

Lifelines

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A&U Frontdesk

AMERICA’S AIDS MAGAZINE issue 294 vol. 28 no. 4 April 2019 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner Managing Editor: Chael Needle Senior Editor: Dann Dulin Editors at Large: Chip Alfred, Hank Trout Special Projects Editor: Lester Strong Arts Editor: Alina Oswald Poetry Editor: Noah Stetzer Fiction Editor: Raymond Luczak Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: T.J. Banks, Sean Black, Larry Buhl, Ruby Comer, George M. Johnson, John Francis Leonard, Candace Y.A. Montague, Connie Rose, David Rosenberg, Candy Samples, Corey Saucier, Justin B. Terry-Smith, Jeannie Wraight, Rob Zukowski Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Tim Courtney, Duane Cramer, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Michael Kerner, Tara Lessard, Tom McGovern, Scot Maitland, Nancy Perry, Alex Ray, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011

In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 • Chris Companik, 1957–2012 Nancy Ellegate, 1959–2015 • Patricia Nell Warren 1936–2019 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 122102743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2019 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/ international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof.

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Telling Stories to Save Our Lives

A

n obituary in The New York Times in the middle of February was where I first learned of Patricia Nell Warren’s passing on February 9. The world-famous novelist (The Front Runner), AIDS activist and treasured columnist of A&U’s Left Field, “Patch” was known the world over as a muckraker in the old-fashioned sense of the word. Take, for instance, a Left Field column aptly titled “Scary Stories,” from April 2005 with Hillary Rodham Clinton on the cover: “Because of their intrinsic scariness, virus stories have political use, regardless of how solidly—or loosely—they’re based on real science. Public-health authorities learned to use them to frighten people into accepting restrictions—often with legitimate reasons. A century ago, yellow fever and Spanish flu made quarantine an accepted reality in American society. When HIV appeared in the 1980s, it became the next in a train of scary new viruses—Hong Kong flu, Ebola, dengue fever, West Nile—to reach public view. The latest is bird flu, looming out of Asia....

“But when scary stories about HIV become a favorite weapon of moralistic politics, problems can arise. In February, news media screamed that a ‘new super-bug’ had been found in a New York City gay man who came to the Aaron Diamond AIDS Research Clinic for treatment. The strain was allegedly resistant to nineteen of the twenty available drugs and led to AIDS in months instead of years. Instead of publishing in a peer-reviewed venue, Aaron Diamond director David Ho and New York City’s health commissioner Thomas Frieden (who sits on the Aaron Diamond board) called a press conference.

“A huge wave of heebie-jeebies swept across the country. Many in the gay community went into hysterics. Conservative pundits demanded names-based reporting,universal HIV testing, quarantine for gays.

“Right away, however, other scientists raised doubts as more information appeared. Turns out the virus might not be as resistant or virulent or even as new

as claimed. But, as a publicist friend of mine says, ‘You can’t unbang the gong.’”

Ultimately, she believed in the power of story, both fiction and nonfiction, that promoted truth over fear. And we celebrate the power of story in this issue.

Candace Y.A. Montague’s cover story interview with singer Evvie McKinney, whose outreach to the HIV community starts with strength in the stories we tell ourselves: “Women’s empowerment starts by knowing that you are loved by God first and foremost. We have to be careful with comparing ourselves to other women. You don’t know what kind of insecurities they have or what they’ve been through.” Stunningly photographed by Sean Black, McKinney is joined by other storytellers. Editor At Large Hank Trout interviewed Erin Allday, a San Francisco-based journalist who helped bring the realities of long-term survivors further into the light. Fiction Editor Raymond Luczak chatted with Chuck Forester about his new novel, which finds its characters navigating the early epidemic.

And Senior Editor Dann Dulin quizzed YA writer Shaun David Hutchinson about raising awareness about mental health issues. In addition, I am pleased to introduce our newest columnist, AIDS activist Candy Samples, who will be telling stories of people using their powers for good in the HIV community.

We need to say goodbye to Patricia (and Managing Editor Chael Needle offers a beautiful tribute in these pages), but we need not say goodbye to the long-lasting effects of her impact.

From her early years as a Reader’s Digest editor to her decades of running her own independent press, Wildcat, Warren was fearless in her belief that the fifth estate was alive and well and so she donated thousands of words and hundreds of hours to making America a greater place for persons living with HIV/AIDS. Thank you, Patch, for telling stories to save our lives.

DAVID WAGGONER

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@au_americas_aids_magazine

Arts Editor Alina Oswald photographed Reverend Yolanda in Manhattan’s Washington Square Park. Her one-on-one with the “sacred activist” proved enlightening as well, and readers showed their appreciation.

The March cover story featured an interview by JoAnn Stevelos with Arash and Kamiar Alaei, who practice medicine at the intersection of human rights and public health.

Stunning photography by JD Urban captured their individual personalities and their fraternal bond.

mosttweeted @au_magazine

@AmericasAIDSMagazine 6

In his For the Long Run column, Hank Trout wrote about the new AIDS Memorial T-shirt from Adam’s Nest, sales of which are going to SAGE.

@au_magazine

Rev. Yoland photo by Alina Oswald; Alaei Brothers photo by JD Urban; T-shirt photo Courtesy Adam’s Nest

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@au_americas_aids_magazine A&U • APRIL 2019

Nell Warren

I

n high school, I read Patricia Nell Warren’s The Front Runner, in fits and starts, standing in Economy Bookstore in downtown Syracuse, one eye on who might be monitoring my queer self in its flutter of awakenings and two hands ready to slam the book shut at any sound. Emboldened by its characters, elite collegiate runners and their coach, I joined the track team. Not long distance like Billy Sive in the novel—sprints and, because my times quickly plateaued, relay races, where otherwise benchwarmers like me could be useful. My skills as a runner never improved, but, thanks to Patricia Nell Warren, my self-esteem did.

Every morning when I boarded the school bus, I was greeted with a disembodied voice: Faggot! I never blinked; I simply walked to my seat and talked about the literary journal with my coeditor, Tuyet. Many others like me found a reserve of empowerment in her words that kept us going. I counted myself lucky to have read The Front Runner when I did. I counted myself luckier when I got a chance to work with her during her tenure as a columnist for A&U. When we at the magazine heard that Patricia lost her battle with cancer and had died on February 9, we spent days in silence and in reflection. We mourned our colleague from afar. As did many others. Her words and her commitment to justice traveled around the world, finding homes in many hearts. She was the guest whom you never wanted to leave.

Sharing about their bond, writer, photographer and activist John Selig told A&U: “What inspired our friendship, however, was not Patricia’s literary notoriety. I was enamored by Patricia’s insatiable thirst for knowledge on a vast spectrum of topics and her expertise

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“Her legacy as a writer and activist will endure.

However, her work is not completely done.”

in so many areas, along with her great wit, commitment to garnering equal rights for LGBT people and all other oppressed people. I was also captivated by her delight in sharing her expertise and amazing life story about growing up on the Grant-Kohrs Ranch in Deer Lodge, Montana (which is now a National Historic Site run by the U.S. National Park Service), along with her years with the Reader’s Digest and years in Spain with the Digest while Spanish dictator Francisco Franco was in power and her experiences after writing The Front Runner as a writer, activist and member within the LGBT community.”

Her accomplishments are too numerous to list here, but standouts among them include penning novels; writing nonfiction books and articles on a variety of topics, from sports to the American West to LGBTQ advocacy; started her own publishing platform, Wildcat Press; taught and mentored youth; and led the pack in long-distance running and inspired running clubs to name themselves after her work, among others.

Writing for A&U, in a 2013 Left Field column where she wondered why we haven’t made an HIV vaccine a top priority, Patricia Nell Warren applied her incisive analytical skills to yet another facet of HIV/AIDS: “I’ve been writing this column for fourteen years, and now and then I have to scratch my head at things that don’t make sense. Sense often vanishes with AIDS because of the colossal push-me, pull-you impact it has on politics. There is the colossal political chasm it has opened, between those who see AIDS as a humanitarian cause and those who see it as the devil’s work.

There is the colossal money involved—the colossal amounts needed for domestic and global treatment and, let’s face it, colossal profits for the pharmaceutical industry.” As with this and other well-researched critiques, Patricia was ruthless, relentless, and, more often than not, right on target. Her credibility impeccable, her logic sound—her activism on the page resembled a street protest, as if all the words on all the signs were strung together into one voice. Yet, she championed out-of-the-box critical thinking, willing to be the lone wolf if needed.

Her legacy as a writer and activist will endure. However, her work is not completely done. Weeks before she died, Patricia was able to finish the fourth and final book in The Front Runner series.

“Warren expended tremendous energy while fighting cancer to make sure this book was completed. It was her last labor of love and a gift to all of us,” reads a statement released by her estate’s executor. However, funds are needed to get it into print, as well as keep her other titles in print and realize other projects, such as film/ television versions of her novels, via Wildcat Press and her estate.

Patricia Nell Warren’s estate has set up a GoFundMe page to help make sure her writing continues to inspire.

If you would like to help, log on to: https://www.gofundme. com/patricia-nell-warren-estate.

—Chael Needle A&U • APRIL 2019

photo by John Selig

TRIBUTE Patricia

NEWSBREAK The National AIDS Memorial Grove (NAMG) has announced that the application period for the Pedro Zamora Young Leaders Scholarships opened on Friday, March 1, 2019. NAMG intends to award a $5,000 scholarship to ten recipients.

The purpose of the Pedro Zamora Young Leaders Scholarships is to support the academic efforts of young leaders who are dedicated to ending the HIV/AIDS pandemic. The scholarships are open to all current high school seniors and college freshman, sophomores and juniors (ages twenty-seven or younger) who have made “an active commitment to mitigating the impact of the HIV/AIDS epidemic and taking on roles of public service and leadership,” according to the NAMG press release.

Previous recipients of the scholarship have gone on to serve in peer-education and prevention programs, as well as working in the reproductive and sexual health fields, pursuing medical careers to work with HIV-positive individuals, researching established and emerging 2018 winners (left to right): Kota Babcock, Emily Nold, technologies designed to mitigate the and Nicolas Rios epidemic, and engaging in activism that addresses issues contributing to the epidemic.

For those who may not know, twenty-tw0-year-old Pedro Zamora appeared on the MTV reality show The Real World: San Francisco in 1994. At the age of seventeen, Pedro was diagnosed with HIV; from then on, he dedicated his life to raising awareness and educating his peers on what they needed to avoid infection. He captivated the nation with his openness, compassion, vitality and charisma, putting a name and face on the epidemic as he spoke openly about his sexuality, his serostatus, and his activism. Pedro’s work and life was cut short when he died of an AIDS-related illness the morning after the final episode of The Real World aired. NAMG is committed to preserving Pedro’s legacy through these scholarships.

Since 2009, NAMG has awarded a total of $250,000 in scholarships to sixty-eight emerging leaders in the fight against HIV/AIDS. The application period opened on Friday, March 1, 2019; the application and a personal statePedro Zamora ment are due at 5:00 p.m. PST on Friday, May 31, 2019; and an essay and letter(s) of recommendation and academic transcripts are due at 5:00 p.m. PST on Friday, June 28, 2019.

The National AIDS Memorial Grove, located in San Francisco’s Golden Gate Park, is dedicated to providing, in perpetuity, “a place of remembrance so that the lives of people who died from AIDS are not forgotten, and the story is known by future generations.” The Pedro Zamora Young Leaders Scholarships is one way that NAMG tries to help create and support the next generation of HIV/AIDS leaders as they pursue their education and careers.

For more information about the scholarships and about NAMG’s other programs, log on to https://aidsmemorial.org/programs/.

Second Patient “Cured”...and a Third For only the second time in the history of the AIDS pandemic, a patient with HIV in London seems to have been freed of the virus after a bone marrow transplant.

Approximately twelve years ago, the so-called “Berlin Patient,” Timothy Ray Brown [A&U, October 2016], was the first AIDS patient to be “cured” of the disease, also due to a bone marrow transplant. Brown was diagnosed with leukemia, a cancer of the white blood cells which make up the immune system; he received a transplant to replace his cancerous cells with a donor’s cells after chemotherapy and radiotherapy. The common factor in all three of these instances is that the donors

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A&U • APRIL 2019

photo of scholarship recipients by Trish Tunney Photography; Zamora photo courtesy NAMG

Pedro Zamora Young Leaders Scholarship

newsbreak carried a mutation in a gene called CCR5, which is naturally resistant to HIV. When used in a bone marrow transplant, the mutant CCR5 gene seems to prevent the virus’s return. Researchers have tried ever since to replicate those results, to no avail.

The London patient (who chooses not to be identified) received a bone marrow transplant as a treatment for cancer. The donor had a rare mutation of the CCR5 gene, which allows HIV to enter cells. This mutation renders one resistant to HIV. After the transplant, the London patient ceased taking his HIV medications eighteen months ago but has remained virus-free.

Investigators published their findings on March 5, 2019, in the journal Nature and presented their findings at the Conference on Retroviruses and Opportunistic Infections (CROI) in Seattle on that date.

Prof. Ravindra Gupta, University College London, and lead author of the paper on the successful treatment of the London patient, said the way to a cure could be editing the CCR5 gene. “What this second case says is this is a bona fide research target and probably the most promising we have for any HIV cure,” he said, according to The Guardian.

Gupta continued, “It’s important because there are 36 million people with HIV worldwide. The aim is to get everybody on treatment for the rest of their lives and that’s a huge undertaking both for drug delivery but also making sure people can stay on medication for decades. There is a cost issue for developing countries.”

Experts warn that bone marrow transplantation is probably not going to be a realistic treatment option any time in the near future because of the high costs of the procedure and the severe risks involved. Bone marrow transplants carry harsh side effects that can last a very long time. But modifying the body’s immune cells to resist HIV might succeed as a practical treatment.

“This will inspire people that cure is not a dream,” Dr. Annemarie Wensing, a virologist at the University Medical Center Utrecht in the Netherlands and co-leader of a consortium of European scientists studying stem cell transplants as a treatment for HIV, supported by amfAR, told the New York Times. “It’s reachable.”

A third previously HIV-positive person appears to be free of the virus following a bone marrow transplant.

The “Dusseldorf patient” has been free of HIV for three months without antiviral drugs, doctors reported at CROI. They caution, though, that the remission is still at an early stage. The report followed closely on the heels of another CROI report of a “London patient” mentioned earlier.

Bone marrow transplants are not a viable solution for the millions with HIV chiefly because of the expense and risks of the procedure and the possibility that the donated cells will be rejected. Now that multiple cases have shown that the CCR5 mutation can be protective against HIV, researchers are hunting for ways of inserting the gene with other technologies that might be provide more viable ways of treating HIV in the future.

Project Inform Ceases Operation Project Inform, the legendary AIDS services and information organization founded in San Francisco in 1984 by Martin Delaney and Joe Brewer, ceased operation on March 15, 2019, after thirty-five years dedicated to improving the health of and empowering people with HIV and hepatitis C and ending the AIDS pandemic.

In an announcement released March 15, Project Inform staffers said that “despite the continued success and evolution of our work in HIV and hepatitis C virus—two of the most stigmatizing diseases in the United States—we have not been able to successfully navigate the current funding environment.”

For more than three decades, Project Inform operated on the belief that it is possible to create the first generation free of HIV and hepatitis C. Toward that end, they focused their work on four areas: drug development, bio-medical prevention, education and health care access. Project Inform encouraged the development of better treatments for both HIV and hepatitis C; advocated for innovative, medically-based prevention strategies; provided up-to-date, life-saving information to help people living with HIV and hep C make the best treatment and care choices; and pressed governments to set policies and assure access to health care to end the HIV and hep C epidemics.

Here in California alone, Project Inform, according to their website, has ensured that more than 38,000 patients get free HIV medications who could not otherwise afford them and have lead efforts to make sure that national healthcare reform is implemented in ways that meet the needs of people with HIV and hepatitis C. Project Inform recently helped to launch San Francisco’s Getting to Zero plan (zero HIV infections, zero AIDS deaths, zero stigma by 2020); and in January, the group worked with AIDS United to release a report on efforts to bring safer consumption spaces—protected and supervised places for injection drug users—to the United States.

Over their three and a half decades, Project Inform produced millions of pieces of print and electronic publications, offered freely to the public, and spent hundreds of thousands of hours counseling individuals on the phone, all as part of their mission to ensure that people know facts about HIV and hep C and can use those facts to positively impact their own lives and the lives of the people they love or provide care for.

In the March 15 announcement, staffers concluded, “When an organization touches so many lives around the globe for so many years, it is impossible to assess its legacy. We trust, however, that Project Inform’s legacy will resound for years to come and influence our own work and that of countless others who have dedicated so much and continue to do so.”

—Reporting by Hank Trout

APRIL 2019 • A&U

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by Ruby Comer

Bobbee Trans Mooremon

Y

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Bobbee nudges my shoulder as I have lapsed into a daze.

Ruby Comer: Oh, sorry. Just pondering on the past. [I inhale profoundly, glancing up at the billowy clouds.] Say, my dear, have you known anyone who’s died of AIDS-related causes?

Bobbee Trans Mooremon: I had an uncle who passed away from AIDS-related causes in the nineties [she says in a resigned voice], but unfortunately, I was not close to him and only met him once or twice. My conservative Mormon family stopped allowing him to visit or attend events when they found out he had AIDS.

Oh wow. That’s really the Christian way, right? I’m being facetious.When I hear the word “Christian,” I run the other way, Bobbee! [Her head wobbles and her piercing sky blue peepers flit upward.]

You’ve been a Roadie for three years now. Tell me about it.

This was my first year as a Bus Liaison, which means I was in charge of one of the SAG buses. If a Rider is tired or injured we take them to the next camp. We try to make the bus a fun experience to lift the Rider’s spirits who are disappointed that they cannot continue that day. movie of all time, we meander down Castro and hunker down on a sidewalk bench.

Straightaway I am transported to a different time, with memories swirling in my head of this legendary thoroughfare: parading down the street in drag (yes, as a man!—dressed in Cary Grant garb a la North by Northwest) celebrating Halloween, having brunch with friends who have now passed on, and witnessing the dynamic Harvey Milk at a rally, captivating a brimming audience—standing shoulder-to-shoulder, sidewalk to sidewalk, a sea of people.

I see, yes. So it seems Roadie’s do all kinds of things to serve the Rider?

Roadies do everything from serving food, directing the riders where to go, cleaning up the camp, to medical services. Roadies do everything so that all the riders need to just focus on getting up in the morning and riding to the next camp.

What grand support! What was your impetus in volunteering?

I originally signed up because in 2013 a friend of mine from Washington, D.C.

Ruby illustration by Davidd Batalon; photo by Christopher Stewart

ep, that’s my friend’s legal name!

Bobbee tells yours truly that a transgender person has the right to change their name. Her family called her Bobbee while growing up and her surname is an extension of her birth name, Moore. Since she was raised in the Church of Latter Day Saints (LDS/Mormon), Bobbee added the “mon.” (Just for the record, Bobbee is no longer affiliated with LDS.) Her middle name is a nod to her activism within the LGBT Mormon community.

She liked how “Trans Mooremon” blended together, plus she’s proud to be a Trans-person! There ya have it…an original lady.

My darling friend has a tale to tell.

Nearly a decade ago, a potential roommate raped Bobbee, after she came out to him as trans. Several months later she was diagnosed HIV-positive, began treatment and, fortunately, has been undetectable ever since. Bobbee credits San Francisco AIDS Foundation for its major support and guidance.

Raised near Salem, Oregon, Bobbee now resides in the City by the Bay. When she was one and a half, her parents relinquished custody of Bobbee and her older brother to her grandmother.

She has not had any contact with them.

Because she is autistic and suffers from chronic back pain and numbness in her legs, she identifies as a “Queer Disabled HIV-Positive Transgender Woman.”

The soon-to-be thirty-nine year old, Bobbee has been an activist ever since she was diagnosed! She has worked to promote HIV education, outreach, research, and is an advocate on behalf of the Trans community. For three years she has volunteered as a “Roadie” for the AIDS/LifeCycle.

One Sunday, following a matinee at the Castro Theatre of the Barbra Streisand film Hello,Dolly! (love my Babs), Bobbee’s favorite

A&U • APRIL 2019

was doing the ride and I was following his journey via FaceBook. On Day 6 of the ride I received a message from him saying he was dedicating this ride to me. I was the only person he knew who was out as being HIV-positive.

Awww. Sweet. Did you ever think about biking it, instead of being a Roadie?

In 2014, I originally signed up as a cyclist. I bought a bike and all the things needed to ride but after riding about a mile I could tell my body would not be able to do it.

Looking back on your three years, is there one moment that stands out?

Yes! [she thunders enthusiastically.] Every year on Day Three of the ride it’s theme day called Positive Peddlers Day, which is an organization born out of the AIDS/LifeCycle.

During that night’s stage program they ask all HIV positive participants to stand and be recognized. It is always a very moving moment that makes me cry. (Bobbee takes a breath.) I will never forget the feeling my first year. I stood in the back of the room watching one hundred people stand up, clap, and cheer for us. It was so powerful and every year since, I have made sure I’m there for that program.

photo courtesy of bobbee trans mooremon

How lovely. How touching. I can see why people are attracted to this Ride. Maybe one year I will join in. [Bobbee confidently smiles then lightly pats me on the back.] When did you first hear about the epidemic?

I actually don’t remember hearing about it until I was living in Portland, when I was in my twenties. Growing up Mormon I was sheltered from all of this. People never talked about it.

Wow, astonishing how some people can be so out of touch. It’s a choice of being in denial. You’ve always spoken highly of your grandmother. Tell me a little anecdote.

Growing up, my grandmother and I watched many films together, but we both loved the film Hello, Dolly! [I nod earnestly.]

We watched it so many times that we wore out the VHS tape and had to buy several new ones. [I giggle; she pauses.] I have so many great memories of singing the songs from the movie with her. We’d sing with the movie or sing while listening to the soundtrack on a vinyl record.

Oh, gosh, yeh! Vinyl records. What a joyful memory I have of those days. Now in some fashion, they are making a comeback. Not to make you relive a nightmare, but can you elaborate a bit on the rape.

After it happened, Ruby, I don’t remember APRIL 2019 • A&U

much. I don’t even remember getting home. For weeks after, it was a blur. I did not tell anyone as I had so much shame. I thought maybe I did something that made him feel it was okay, even though I said “No” and fought back. I also thought no one would believe me….

[There’s silence between us.] So… sorry…Bobbee.

I went through a lot of depression and moved to Utah a couple months later. I needed to get away and just escape. [She stops.

A homeless person appears and Bobbee gives him a couple of dollars.] Today I tell my story, Ruby, to let others know they’re not alone.

As a transgender woman living with HIV, I want to put a face on a segment of the LGBTQ community that’s at high risk of becoming exposed to the virus.

Indeed you are doing just so. A brave soul you are. What’s the number-one stigma surrounding HIV and the trans community today?

I think the number-one stigma around both communities is that many people think HIV-positive people or trans people are not meant to be sexual human beings.

Many people just don’t see transgenders as sexual—or even possible partners. There’s also a huge problem with many cisgender men who fetishize transgender women, only seeing them to use for their sexual needs.

Hmm, good point. Anything else?

[She ponders, sweeping her amethyst tinted locks through her fingers.] I also welcome the day when studies, education, research, outreach around HIV and AIDS are transgender-inclusive.

Hear, hear! Ever since your rape and diagnosis, you have been out there helping others.

Bless your heart. What motivates you to continue your work?

Being raised Mormon, we are taught to give back to our community and do what we believe is right. I feel that this is the foundation of my activism. In my life I have had so many people help me, including amazing organizations and groups. It’s my purpose in life to give back and help others.

Bravo, sister! What’s your focus these days?

The leather community. I try to be as visible as possible, like attending their events and educating others that transgenders are also a big part of that community. Earlier this

year, I won the title of “Ms. San Francisco Leather 2019.” [She clears her throat and in a boastful voice declares] I’m the first transgender woman to win!

Congratulations! You should feel proud.

[Bobbee adjusts her cute little pink retro Angora sweater then continues.] I’m also trying hard, Ruby, to raise $4,000 this year for AIDS/LifeCycle, in honor of my fourth year as a Roadie.

[I grin, my eyes moist with tears.] I’m so happy for you, Bobbee! You’ve come a long way, baby. Look at you. You are content and cheerful. Who do you look up to?

I look up to many people. Marsha P. Johnson has always inspired me. ACT UP is another and in all my activism for the past ten years, I try and maintain the power, teachings, and spirit of that iconic group. I look up to all the amazing people involved in AIDS/LifeCycle, Black Lives Matter [Bobbee breaks, straightens her torso and reaches upward, as if she’s lighting the heavens on fire, and announces]…and all the amazingly fierce women who stand up and refuse to be silenced or invisible!

Take a spin with Bobbee at her Roadie Fundraising page: www.tofighthiv.org/goto/bobbee4.

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

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

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

Conference Organizers

Learn more at: ruralhivconference.com

Another Failed Relationship another lesson learned

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“

APRIL 2019 • A&U

”

there’s Andy. He’s not exactly a serious relationship, he’s married to a guy in another city and their relationship is open.

What Andy and I have been enjoying for a few months now is a wonderful friendship with a sexual component. Andy is also negative, but his work involves various major HIV and AIDS organizations and he is much more enlightened and comfortable with someone who’s poz. We don’t talk about his husband a lot, but I suspect that he’s HIV-positive as well. There’s no worry about transmission because he knows that I’m undetectable.

We can be close sexually without a condom coming between us. If he did want to use one, I would be fine with it. Most importantly, there is no judgment involved. Andy leans as far to the left as Paul does to the right. If the circumstances were different, we’d be a much better match. What he shows me is the kind of guy that I need for a partner—just as much as Paul shows me the kind I don’t. Every relationship is a lesson. We just have to be open to learning it.

John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language.

He has been living with HIV for fifteen years.

His fiction has been published in the ImageOutWrite literary journal and he is a literary critic for Lambda Literary. Follow him on Twitter @ JohnFrancisleo2.

illustration by Timothy J. Haines

n my last column, I mentioned a trip I was taking to Baltimore to visit yet another guy I had met online. It didn’t work out for us, but we actually had a nice weekend regardless. I also fell in love with the city and it’s reasonable cost of living. Like a friend said to me when I was texting him about how little this guy was going to rent his beautiful one bedroom condo for, “It’s too bad you can’t date the condo.” Things didn’t work out for a lot of reasons, and I really am not disappointed. There were some serious issues, and one of the most serious were Paul’s backwards and downright judgmental views on HIV. I told him about my status early on, as I often do, and to say that he freaked out would be putting it mildly. I’m used to all kinds of reactions when I tell someone I’m interested in about my status, too much time researching and talking as we all are. He didn’t go anywhere, he to experts and advocates to go down that didn’t cut off communication so I guess road ad nauseam. The subject came up I thought that there was a chance too he and it came up often, and Paul is a perfect could come to terms with it—and as far example of someone who feels that they as taking precautions and having safe sex, are right in their assumptions and is not he might have. But he had absolutely no willing to learn. faith in U=U and the I could get extensive studies that tell beyond all that, ...it’s still bothering us we can have sex and I really could. me that I was willnot pass the virus on, What I couldn’t ing to accept his backwards even without a condom. get beyond was He was vehemently the judgment. The and prejudiced ideas on HIV anti-PrEP and wouldn’t idea that sometransmission. What does that how those of us listen when I told him say about me? it had a higher efficacy with HIV deserve rate than condom usage it because we alone. Paul felt that no one could absolute- should have known better. He felt superior ly guarantee that he wouldn’t get AIDS because he had avoided it. Things are over and that that was all he needed to know. with Paul, but it’s still bothering me that End of story.

I was willing to accept his backwards and Now, I’ve said in this very column prejudiced ideas on HIV transmission. that I feel that it is completely up to the What does that say about me? Am I so negative partner what precautions to take desperate for a relationship that I would and it was time to put my money where swallow his garbage? Is it a reflection my mouth is. I would prefer that I not of the fact that somehow, after all use condoms when I’m talking about a these years, I still judge myself for my serious, long-term relationship, of course. status? There were a lot of reasons that But if my partner is negative and he’s not a relationship with this man wasn’t in comfortable with that, so be it. What I the cards. But his views on my status found that I’m not willing to do, is conweren’t the tipping point and that’s still stantly debate perfectly sound scientific bothering me. research. In my line of work, I spend On the opposite end of the spectrum

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Saltwater Rain

in the end there is only love

I

t’s 8:30 a.m..

It’s a cold winter morning in the city that they say is full of angels. I am naked and wet and freshly shaved in all the right spots; and I am vulnerable and exposed. I have only been to the gym once the whole winter, so like a bear in cheesecake and cheeseburger hibernation, I’ve gotten a bit portly and pudgy, a little chunky and round, and a whole lot of thick and luscious in all the other spots.

But you’d be surprised; I know that everyone on Instagram is a twenty-six year old Mid-Atlantic rock hard muscular beauty covered in thick manly hair, and that’s the standard of sexy these day, but some still find a big Black bearded daddy with a little belly and a little extra butt, with legs as thick as tree trunks, shaved cocoa butter smooth in all the right spots, a delicious snack they wouldn’t so easily pass up.

She’s still a pretty girl.

I have been staring at my toes for the last hour: Un-peticured dark skinned knot-knuckled twelve-inch man feet on white porcelain.

Outside my window it is raining, and the city that was once filled with angels is biting and cold and unforgiving. But I am in the shower, and there is nothing but me and warm steam kissing my naked body as hot liquid flows down my skin: My hips, my elbows, my lips, my biceps, my belly, my scarred thigh.... Finally licking my delicate parts like loving waterfalls—like some nubile water nymph who has had her naughty way with me then splashes into the tub, and pools giggling at the copper drain, and drowning herself until she returns her journey to the vast saltwater magic of the ocean.

And it is beautiful.

And because Todrick Hall is Blasting “Heaven” loud in my bedroom on Spotify, and because I am rocking back and forth on my heels in the most sensual Black boy rhythms, and because my hands are covering my face in an exquisite prayer, and because my apartment has great water pressure, and because in the shower I am still surrounded with steam and fog, and so much hot water wet, if you were outside looking in, you would not even be able to

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tell that I am crying.

Because sometimes you just need a good cry in the shower to let you know that everything is going to be okay.

Last week I found out that I have cancer.

It’s in my throat.

Oropharyngeal squamous cell carcinoma.

HPV. Surgery in a month.

Possibly chemo and possibly radiation.

Possibly.

If anyone asks. I say that I am not afraid. I say that the diagnosis “makes sense.” I laugh wide and bright like a sunrise and say: “I have been well prepared by having AIDS for the last twenty years.”

I say that: “HIV is way scarier!” And filled with far more more burning angst and bloody handwringing than the pink scarf covered, bald headed, dow-eyed pale deity that personifies cancer. But then again, I have never cried over having HIV. I have never stayed up until the early morning thinking about treatment plans and second opinions and all the men that I have loved and lost: Don, who I call Donathan—who I conjured once while staring at Park La Brea on my lunch break across the street.

“I want a life like a rich White man,” I thought, and a week later, I met him—and he was perfect and blue-eyed, and moved me into his Park La Brea dream house three months after that. The Eurasian with the perfect body who thought I never liked him. Peter, who I called Thomas; who I loved so deeply I would just smile at him over pancakes and cry. Jose, who spoke no English, and whose wedding ring I still wear. Michael, who is the love of my life and my bestest friend. Javier, who I called all “black concrete and broken glass” and yet who I tattooed on my ribs in ink. My brother. And my Brother’s brother. Wilson Ron Keiser, who made me realize that

“Beautiful” would always be my most favorite word. And the one with the red hair. And the one who could draw. And the creepy one who would stare at me while I slept.

And I wonder if I have loved enough?

I wonder if this is the thing that ends me, will my life have left a mark?

Will my friends remember my name after the radiation has riddled my body and the chemo has taken my tongue from me, and I need one of them to hold my hand.

And if I am of the ten percent who do not survive, I wonder if the words that I have written over the years will continue to fall on fertile soil and burrow themselves gently into broken hearts like some never-ending lyrical vine? I wonder if someone will find my novel on my laptop and print it out so that at least one stranger can read it and be changed?

Or will the cancer eat away all that is me, like so many tears disappearing down my drain.

And if I survive cancer like I have been blessed to survive HIV, will I promise to love more?

I promise to love more.

Because in the end there is only love and saltwater and rain.

Love and Light.

Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Nonsense can be found at www. justwords.tumblr.com.

A&U • APRIL 2019

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

ere we are in April, the month where a lot of us think about Easter and Easter egg hunts. As adult men, I am suggesting that those of us with testicles go on our own “egg hunt”! Why? Testicular cancer is serious business and checking one’s own “eggs” is paramount to staying healthy.

Testicular cancer can affect all men, no matter our serostatus. There is very little evidence that having HIV is a factor in having an increased risk of testicular cancer, but it is important that, as a public health issue we must be informed of how to protect ourselves and what to look for.

According to the American Cancer Society there are different types of testicular cancers, but doctors can analyze the cells of the cancer to see what type of cancer it is and figure out what treatment is best.

Typically cancer cells of the testicles are known as germ cells. The germ cells are made up of two types of tumors called seminomas and non-seminomas. The Cancer Center states that seminomas and non-seminomas are very different.

The seminoma tumors are categorized into two types of tumors. The classical seminoma usually occur in men between the ages of thirty and fifty. The spermatocytic seminomas are usually found in men around or over the age of fifty-five. Even though both types of seminoma tumors are found in all ages, the classical seminoma is more commonly found.

The non-seminoma are categorized into four types. These types of tumors are usually found in teenagers and people in their early forties. The tumors are embryonal carcinoma,

APRIL 2019 2018 • A&U• A&U DECEMBER

yolk sac carcinoma, choriocarcinoma, and teratoma. Embryonal carcinoma cells grow very fast and can quickly spread outside of the testicles. Yolk sac carcinoma cells are shaped like yolks and are very common, especially in children or young adults. Yolk sac carcinoma usually responds very well to chemotherapy. Teratoma cancer cells look like a three-layered embryo under a microscope.

Okay, now that we have the technical stuff out of the way, let’s talk about prevention and treatment.

Drop Those Eggs: Many men are born with undescended testicles, that is, testicles that haven’t moved into their proper position. Having undescended testicles increases your risk for testicular cancer. This condition is easily rectified with surgery and usually is detected at birth.

Feel Those Eggs: Yes, men, feel those testicles. It’s time for a self-exam. The American Cancer Society states that you need to pull your penis out of the way to examine each testicle separately. You then must hold one testicle between your thumbs and fingers with both hands. Next, roll the testicle gently between your fingers. You are doing this to see if you feel any hard lumps or nodules. Also check to see if there are any change in size, consistency, or shape.

Let the Doctor Feel Your (Easter Egg) Basket: You need to speak up if your physician is not being proactive about giving you a testicular exam with every check-up. I go to my doctor every three months and I’m considering having him do an exam every time just to be sure. After all, I just turned thirty-nine and I’m not getting any younger; I want to stay on top of my health as I age.

X-Rays & Ultrasounds: X-rays can be

used to look for tumors on or around your testicles. But this is often used to see if the cancer has spread. There is another way to test for testicular cancer.

If you or your doctor think there may be something that needs further examination of your testicles, an ultrasound can be ordered and can help doctors look for tumors that X-rays may not detect.

Testing the Testes: The doctor may want to run a blood test. The blood test will tell the doctor whether the cancer will remain in your body if the removal of your testicle is a solution.

Egg Replacements: The doctor might decide that you will need to have your testicle removed. The doctor can use a prosthetic, saline-filled testicle to replace the removed testicle if you choose. To remove lymph nodes your doctor would have to preform surgery. But caution: this can cause nerve damage and might make it difficult to ejaculate.

Radiation & Chemo: Doctors can use radiation to kill cancer cells. If your doctor has removed your testicle, this treatment might be used to ensure the removal of cancer cells. Please be aware that radiation treatment may cause nausea, fatigue, irritation of skin and reduction of sperm count. Chemotherapy may be also recommended by your doctor, before or after lymph nodes are removed. It often is used if the cancer has traveled to other parts of your body.

Be aware that nausea, fatigue, hair loss and increased risk of other infections of the body may be side effects.

Preserve Your Yolk: Many of us want to have biological children. Talk to your doctor about sperm preservation before undergoing treatment. Also, let me state that I am the father of two adopted children, so sperm preservation is not your only option to be a parent. ◊

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Lazarus Lite

by

illustration by Timothy J. Haines

L

eon Russell, not Jesus, brought me back from…well, from not-quite-deadbut-damn-close.

I started to use a wheelchair a year ago, around the first of April 2018. I tried to make the best of it—see my July column, “The View from Down Here”— but truth be told, I hated every minute I sat in that damned chair.

Then, for months after my pelvis-spraining fall in October, I couldn’t leave the apartment unless my fiancé Rick helped me—got me out of the wheelchair, got me showered, got me dressed, and got me seated in the wheelchair again. And since I couldn’t get up the stairs from our living room to the kitchen and the bedroom, I couldn’t cook any more, I couldn’t wash the dishes or put them away, I couldn’t make the bed…I was basically a useless lump of unattractive flesh.

There were two things about confinement that drove me absolutely bat-shit crazy. For one, I hate having to depend on anyone for anything. Like nearly all of the long-term AIDS survivors I know, I spent the 1980s and ’90s helping other people—doing for them essentially the same things that Rick was forced into doing for me: feeding, cleaning, shopping, bathing, etc. The role reversal was unexpected and embarrassing and very scary (what if Rick gets tired of this crap and…).

The other thing I hated was the excruciating blood-draining brain-cell-devouring BOREDOM. I love our apartment here in San Francisco, but not twenty-four hours a day, day after day after boring day. Being unable to do anything or go anywhere made me extremely unpleasant to be around. I know.

In that period of wheelchair confinement, I cried more for myself than in all the sixty-five years before then. I mean, APRIL 2019 • A&U

Hank Trout my miracle-free rock ‘n roll resurrection

I’ve cried at least once a day since the early 1980s, for friends and lovers lost to AIDS, every day, but only rarely for myself.

And I hated every damned self-indulgent self-pitying tear I shed.

Then, some time near the middle of January, I was sitting in the wheelchair in our living room, listening to Leon Russell’s Retrospective album. Understand, I’ve practically worshipped Leon Russell ever since I first heard Joe Cocker’s Mad Dogs

and Englishmen album in the 1970s, with Russell on piano. That rolling, rollicking piano and that gravelly almost-unmusical voice can take me to church and send me into ecstatic reveries. One of my few genuine regrets in life is that I never got to see Russell in concert.

But I certainly never expected him to save my life.

As I sat there in the chair on that cold rainy January day, “Roll Away the Stone” began to play. If that song doesn’t get your feet tapping and your head bobbing, check your pulse. It certainly makes me feel like dancing! As it played, I heard Won’t you roll away the stone

Why be cold and so alone?

Won’t you roll away the stone Don’t you let it die Come on roll away the stone “Don’t you let it die!” I realized that if I didn’t get out of that chair, right then, that very moment, I might never get out of it.

And I refuse to die sitting down.

I knew I had to roll away the stone and live.

I’m so f*#king bored with this shit! I muttered to myself as I looked around the room. I locked the wheels on the chair, braced myself on the chair’s arms, and in an act of sheer angry willpower, I pushed myself up to my feet. Unsteady, a little shaky, I stood there for a few moments, scared but determined that this ends right now! With my cane clutched in my right hand, I took a few short tentative steps and…I didn’t fall down! A few more steps and I could reach the stereo. I restarted “Roll Away the Stone” and cranked up the volume and suddenly I was, well, not dancing exactly, but I was moving.

When Rick got home from work, we put away the wheelchair.

I still struggle. Due to my asthma and COPD (exacerbated, like all things, by the HIV), I cannot walk more than half a block without getting winded, and my back still hurts like hell if I stand for more than just five minutes. But I’m mobile. Which means I’m alive again.

Look, I am the least spiritual, most religion-averse man on the planet, and I certainly don’t believe in miracles. But Leon Russell made me believe in resurrection.

I’m no Lazarus and he’s no Jesus, and I waited a helluva lot longer than four days for him to rock ‘n roll away the stone so I can live. Let’s just call me “Lazarus Lite.”

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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’ve known the fabulous Blake Strasser for the past five years, first being introduced to her when I was talked into signing up as a crew member for the Braking AIDS Ride, benefiting Housing Works in New York City.

The Braking AIDS Ride is an intense three-day journey across New York State ending in New York City with over 100 riders and a crew committed to fundraising, raising awareness, and, ultimately, ending the AIDS epidemic.

Blake works at Global Impact Productions, the company that produces the annual ride as well as other rides and fundraising events for various causes.

How fitting to have her here for my debut interview for A&U Magazine. Like my song, “Powers for Good,” Blake is someone who does just that in her own life—both in her “day job” and during her extracurricular time, “having participated as a rider for twenty-two years,” Blake says.

She adds: “When I did my first ride I promised I would ride until we didn’t have to anymore.”

Y’all’ve just got to meet my friend, Blake!

Blake Strasser not only coaches but participates in many AIDS rides.

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Candy Samples: In my brief time participating in AIDS rides I quickly learned that the ride “family” consists of some very passionate people that have been affected by HIV/AIDS in some way. When did you first become aware of HIV/AIDS? Blake Strasser: I was in high school in Colorado in the mid-eighties and I am ashamed to say it is something peo-

ple actually joked about. It seemed so distant. Then I moved to San Francisco for college, studying theater and music and everything changed. It felt like I was losing friends as quickly as I could make them. I lived in the Castro my second year and was literally watching my community shrink. Lyndon LaRouche had a ballot initiative to “quarantine people with AIDS in ‘camp-like’ settings.” It was a terrifying time both for the ignorant and the involved.

Did you get involved with HIV/AIDS causes while you were there or did that come later?

I did, but not in an organized way.

Lots of protests and helping wherever I could, but it was really a bit of a triage situation everything was happening so quickly.

You were literally “in the trenches.” After your schooling in San Fran, was that when you headed to New York City? And was that when the rides started?

Yep. I did two and a half years of college. Basically took all of my performance classes and then headed out. New York is a bit compartmentalized compared to San Francisco. While New York was also an epicenter of the epidemic, there were huge swatches of the city where you wouldn’t even have known anything was going on.

I threw myself into work. I was still losing friends on a regular basis. It’s scary how normal it became. I was numb. Then on a really bad date I excused myself from the table and there was a stack of postcards for A&U • APRIL 2019

Candy photo by John Petrozino; ride photo courtesy B. Strasser

I

BLAKE STRASSER

the old Boston-to-NY ride by the restroom. I picked one up and called from the payphone right there.

I was going to just get info, but ended up signing up to ride. I don’t think I had ridden more than ten miles at that point and I had never fundraised. It just felt right. I needed to get back in the fight.

You saw the sign—literally! How long after that first ride did you begin working “in the field,” so to speak, helping organize rides?

I started volunteering a bit after the first year but didn’t officially join the team until 2000. Then I joined Global Impact in 2003 and have been there ever since. The theater company I was co-founder of would always do our final dress rehearsal as a fundraiser and my cut would always go to the ride beneficiaries. That would have been late nineties.

Pos Pedalers photo courtesy B. Strasser; portrait by Alan Barnett photography

So you got involved with Global Impact before becoming staff there? It must have really spoken to you!

A different company predated Global Impact, but, yes, I was involved as a participant and volunteer before I made the career change. Actually I was on the Alaska ride volunteering on the gear crew when I realized I wasn’t happy doing theater anymore and that what was fulfilling was making a difference through the rides. A few months later a job became available and I jumped on it, never looking back.

Do you find that putting on the various rides is a lot like putting on a show?

A theatrical background did really cross over well.

Not just the obvious production similarities, but the listening skills I picked up. Emotions run high on and leading up to the events, and it is amazing and humbling the things people share with me. The challenge of the ride and getting ready for it can leave you a bit raw. It’s like therapy in a lot of ways. You dig really deep and uncover things you haven’t thought of in years if at all. I am grateful for the amazing people this ride brings into my life. It’s overwhelming.

Any words of advice or encouragement for the next generation that might be on the fence about participating in an event such as the Braking AIDS Ride?

I always go back to one of my favorite quotes.

Henry Ford said, “whether you think you can or think you can’t, you are right.” Anyone can do the Ride; it’s fully supported and our crew will take great care of you. We even have a new incentive for young riders, under the age of thirty, coming on to Braking AIDS for the first time, with a lower $2,800 fundraising minimum. Anyone can help end AIDS, and we need everyone to help! The awareness that is raised and the stigma that is removed by our riders and crew as they prepare is irreplaceable. We are getting closer to ending the epidemic every day and we need everyone to push!

And that’s how I met you—as the rider coach. You gave me the rundown of what to expect and it’s been a life changer for me. How does it feel to have evolved from being that first time rider into a coach for so many embarking on their first journey?

I just feel lucky. I found a way to make a difference when I really needed one. My first ride, I was angry and scared and I was able to channel that into something completely different. The fact that we now have the tools to end AIDS still hits me in waves. I am Blake Strasser and Roy actually thinking about next steps, which a few years Coleman, both former ago I never did. I assumed I would be fighting AIDS national board members of into my grave. There is still work to be done, but there Positive Pedalers.

For more information about Braking AIDS Ride, log on to: is so much hope and an actual plan. It’s amazing. We www.brakingaidsride.org. will all look back at this someday and know we played a role in it. This is one of the rare times when the saying “there are no Candy Samples is a singer/songwriter drag artist in New York City. In her small roles” is actually true. It’s so many people pushing the boundarspare time, she fundraises and raises awareness for many different HIV/ ies of what they can do that is going to end the epidemic. It’s complete- AIDS organizations. She is a fierce ally to the HIV/AIDS community and ly overwhelming. When I look at the people around me, including you, encourages all to use their “Powers for Good.” For more information, log I am humbled to have played the smallest of roles. on to: www.samplemycandy.com.

APRIL 2019 • A&U

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Painting Picture a different

Lola Flash Talks About Confronting Ignorance, Bigotry & Cultural Erasure with Her Camera

by Lester Strong

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hotographer Lola Flash has been called an “LGBTQ Art Icon,” and with good reason.

From portraits to landscapes to cityscapes, her images capture the people, places, and events she photographs in dynamic ways that leave an indelible impression on the viewer.

Among the topics her photographic eye has explored: gender-fluidity, and the ways visual representations of gender affect our lives and society (in the series “surmise”); women over seventy years old who serve as role models of people at an advanced age who still remain actively involved in their life’s work (“salt”); the impact of skin pigmentation on the lives and psyches of black people in our society (“[sur]passing”); queer and non-gender-conforming trailblazers who have offered alternatives to constrictive social and cultural norms (“LEGENDS”); lesser-known architectural similarities and differences between a number of cities around the world (“quartet”); autumnal light in different New York City seaside neighborhoods and the yearning it can

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cause for the bygone summer (“Scents of Autumn”); and last, but hardly least, a unique and dazzling photographic view of the AIDS crisis and ACT UP demonstrations in the late 1980s and early 1990s (“AIDS Art”).

Indeed, Flash emerged on the professional photography scene in the 1980s, an era ripe for the emergence of a black, lesbian artist harboring an activist soul to make her mark in the world. As she noted in a recent interview, “I moved to New York in 1987, I believe, and many of my friends were already members of ACT UP. I got sucked in, and before I knew it I was demonstrating, planning demonstrations, visiting sick friends in hospital, and going to funerals. In hindsight, I always wanted to be part of a revolution. I was too young for the Civil Rights movement and the Vietnam War protests, so the AIDS crisis gave me my chance to put my body on the line, I am very proud of the work we did.”

Flash put her body on the line in AIDS protests, but she took her camera along with her as a member of Art+Positive, a New York-based ACT UP art action affinity group fighting AIDS phobia, censorship, homophobia, misogyny, and racism.

Along the way, she produced some

spectacular images, two of the most intriguing of which were stay afloat—use a rubber, utilized by the London AIDS organization GMHA for a 1993 campaign, and AIDS Quilt, taken at the Second National March on Washington for Lesbian and Gay Rights in 1987. She was also a photographic subject herself in Gran Fury’s famous 1989 poster Kissing Doesn’t Kill: Greed and Indifference Do, where she’s the last person on the right, kissing another woman.

For both stay afloat—use a rubber and AIDS Quilt, Flash employed what she calls her “cross-color” technique. As she explained in the interview: “Cross-color is a process I stumbled upon when I was at the Maryland Institute College of Art (MICA). To make a long story short, I discovered I could get fantastic colors by developing my photographic film on negative paper. Red became this gorgeous blue/green and black became white. So I started shooting with the idea that my color palette was going to be purposely reversed—thus cross-color was born.”

Flash developed cross-color, “before Photoshop,” she said. Cross-color “is a comment on the notion of ‘perfect Kodak days,’ in reverse. I was known for this process; it was my signature style.

It started by accident. I had a number of images shot on slide film, but had run A&U • APRIL 2019

A&U Gallery

AIDS Quilt (from the “AIDS Art” series), 1989, darkroom print, 35mm film camera, 30 by 24 inches

out of the proper paper to print them on. Instead, I used negative paper and was surprisingly happy with the results.

The colors were so vibrant, and all hues were reversed.

Blues became reds and white black. I was consumed by the psychological meanings of what colors were supposed to denote. For instance, when looking up the definition of ‘black,’ one found (to name a few examples) ‘full of gloom,’ ‘very wicked,’ or ‘evil.’ These meanings disturbed me then as much as they do now. So, from that day until the end of the 1990’s, I set upon a path where I created a world that I could happily live in, one in which the viewer’s expectations of color are challenged.”

Flash loves colors—her comment in the interview: “I love, love, Cheryl Dunye (from the “LEGENDS” series), 2017, love colors”—but not just for aesdye-Infused pigment print thetic reasons. “In the beginning, when I was just a kid [hometown: on coated aluminum, Montclair, New Jersey], my camera Canon digital SLR camwas my way of entertaining myera, 20 by 16 inches self…a way of capturing all the cool stuff I saw on a daily basis…It wasn’t until I got to college and started creating my cross-color work that I realized I could make statements, share my point of view about race and sexuality by using my camera. I’ve never been very vocal, so the camera was and still is an excellent way to get my viewpoint out there.”

Race, sexuality, and (one should add) gender are at the forefront of the viewpoint she wants to communicate, and she doesn’t always do it through cross-color photos. Take her portrait of the black, lesbian, award-winning filmmaker Cheryl Dunye, perhaps most well known for Watermelon Woman (1996), which explores the history of black women and lesbians in film, and Stranger Inside (2001), about black lesbians in prison. Without using cross-color, Flash in this photo (which is nevertheless still full of color) conveys a sense of proud accomplishment by a woman who can serve as a model to others for having blazed an important trail through some little-known parts of American history.

Another example: her portrait of civil rights activist Esther Cooper Jackson, who at over a hundred years old still serves as a reference point for the ongoing efforts to end racism in America despite the current ugly retrograde political climate in this country.

And still a third example: Agnes Gund, who at eighty years of age remains a vital participant in philanthropic, social justice, environmental, women’s, medical, and civic causes.

Coney Island (from the Asked to describe the reasons for “Scents of Autumn” series), 2008, C-print, large her focus on racial, ageist, gender, format film camera, 30 by and lesbian/gay/trans issues in her work, Flash replied: “I use pho24 inches. Edition of 10 tography to challenge stereotypes and offer new ways of seeing that explore, interrogate, and transcend perceived gender, sexual, and racial norms. Cliché though it may sound, so much has changed, but so much has stayed the same. I grew up in the 1960s, a time when Black women were finally able to vote, the civil rights movement was ripe, and most queers were in the closet. But I never saw myself [portrayed] in the media, in school I was teased because I was a light-skinned ‘tomboy,’ and the books we read were the ilk of ‘Dick + Jane.’ As I got older, I noticed that in the movies older white men were given the lead roles and, of course, their co-stars were young

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A&U • APRIL 2019

A&U Gallery

stay afloat—use a rubber (from the “AIDS Art” series), 1993, vintage darkroom print, 35mm film camera, 24 by 20 inches. Part of the Albert + Victoria Museum collection, UK and usually blond. Herein lies my need to paint a different picture, shall we say.”

About her interest in portraits, Flash had this to say: “I create portraits because I love my people, and it is such a pleasure to create an image of someone that makes them feel beautiful. I think that so often people don’t see their own beauty. We are so busy working toward surviving, going to work, paying the rent, and dealing with this thing called LIFE that we forget to really look in the mirror. Add to that mix racism, sexism, homophobia, and transphobia, and what you get is a whole lot of misrepresentation or [the cultural] absence of the folks in my communities. It is therefore my duty to create portraits of the people that are still being erased culturally in this twenty-first century.”

And about her interest in cityscape and landscape photography, Flash explained: “My series ‘quartet’ and ‘Scents of Autumn’ are also kind of like portraits to me, although I imagine most people would label them landscapes. In the same way that I am always concerned with similarities and differences in my portraits, I am also interested in those qualities in these APRIL 2019 • A&U

two series. I often think of both series as my ‘watercolors,’ in which I return to the basics of art: composition, light, and texture.”

These days Flash has turned her activist impulses in the direction of education, teaching visual arts at a high school in Brooklyn. “I used to say that teaching was great because it paid for my [photographic] film. But now I really love it. I’m invested in my school, and enjoy creating lessons that engage our students. Teaching is definitely not for the faint-hearted. Many of our students are challenged, challenging, or both. But I walk into the classroom, after having traveled the world, standing on solid ground, feeling confident. We just started one of my favorite projects, where we start off with a portrait I take of [my students].

The project is based on Shepard Fairey’s Obama ‘Hope” poster [famous from Obama’s 2008 Presidential campaign].”

As final questions in the interview, Flash was asked: What do you think is the best way to educate young people about AIDS? Her answer: “I’m not sure. I dabble in it a bit when I talk about Keith Haring’s work.

But I have to say, this is our health teachers’ area.” And when asked about what she thinks the priorities are today for dealing with the AIDS crisis, she answered: “Gosh, well, a brilliant start would be to have healthcare for all. We really need healthcare for all!”

Healthcare, racism, misogyny, AIDS, homophobia, transphobia—seemingly intractable problems and crises. But Lola Flash’s photography, activism, and even teaching point to the only possible means of finding solutions: creative thinking, active engagement in public life, and seriously educating people to accept the realities of the social, political, and natural world instead of indulging unreal fantasies that excite them and interior demons that incite many people to fear and bigotry.

Lola Flash, it seems, is quite a teacher even outside the classroom.

For more on Lola Flash, visit lolaflash.com. For those traveling to England in the near future, Flash’s latest exhibition, titled “Lola Flash” opens April 25 and runs through August 24 at Autograph, Rivington Place, London EC2A 3BA; website: autograph.org.uk.

Lester Strong is Special Projects Editor of A&U.

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to our With “Last Men Standing,” Journalist Erin Allday Honored Long-Term Survivors & Shared Their Wisdom

by Hank Trout

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hree years ago, in March 2016, the San Francisco Chronicle published a special twenty-page, advertising-free supplement to its Sunday edition containing a 12,000-word ground-breaking, heartbreaking story about eight men living with HIV in the Bay Area. These “Last Men Standing” are all long-term survivors of the worst years of the HIV/AIDS epidemic. As the tagline to the article stated, “They had the remarkable luck to survive AIDS, and the brutal misfortune to live on.” These eight men eloquently shared with Chronicle reporter Erin Allday their stories of pain and loss, of surviving and thriving.

Ms. Allday, one of San Francisco’s most respected journalists, graduated with a degree in political science from the University of California, Berkeley.

She worked on the UCB newspaper, The Daily Californian, all four years. Since then she has written for various Bay Area newspapers and won a prestigious Polk Award for regional reporting. She joined the Chronicle in 2006. For “Last Men Standing,” she received two awards from the Association of LGBTQ Journalists and an honorable mention from the California News Publishers Association.

Her reporting for “Last Men Standing” formed the basis for a documentary of the same name that premiered at San Francisco’s Castro Theatre in April 2016 [A&U, May 2016]. As a long-term HIV/ AIDS survivor myself and a writer, I was interested in what prompted Ms. Allday

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to write the article and how she went about it.

Hank Trout: What was the original impetus for “Last Men Standing”?

Erin Allday: The first time the topic came to my attention was during a 2013 interview with doctors who had treated people during the height of the epidemic in the ’80s and ’90s, who said that their patients had suffered from symptoms of PTSD; they’d also seen similar symptoms in their surviving patients. A few months later I heard about and attended a meeting of long-term survivors held in the Castro sponsored by Tez Anderson’s new Let’s Kick ASS (AIDS Survivor Syndrome).

What finally pushed me to pitch a story to my editors was the suicide of Jonathan Klein, a long-term survivor with deep roots in the Castro. At the time, a lot of the public messaging around long-term survivors was that they felt lucky to be alive and to have a second chance. So it struck me as profoundly upsetting that someone who had survived the worst of the epidemic would be moved to suicide.

Clearly there was more to the story than was being told. I pitched the story to my editors in early 2014.

Vince Crisostomo (the San Francisco AIDS Foundation) [A&U, September 2016], Gregg Cassin (the Shanti Project) [A&U, April 2016], Tez Anderson and others. I explained the proposed story to them and asked if they would reach out to long-term survivors on my behalf.

Almost immediately I began hearing from survivors across the country who wanted to talk. I interviewed more than fifty survivors—men and women, gay and straight, from across the country. I quickly decided to focus on gay men who had become infected in the 1980s and lived in the Bay Area.

Choosing the eight men was difficult.

I wanted a diversity of experiences, men who were representative of the trends I’d identified among the survivors I’d interviewed, men who had suffered great loss, who were dealing with isolation and loneliness, who had ongoing health issues due to HIV/AIDS, who had symptoms of PTSD, or who were facing financial and housing hardships. The men we worked with needed to be willing to use their full names and be comfortable with having their photos published and working with our video team for the documentary.

How did you contact survivors to interview? How many interviews did you conduct to find the eight men you wrote about? What selection criteria did you use?

The first step was contacting activists in the HIV/AIDS community, including

Did you encounter any resistance? Was there any topic that these men said was off-limits, anything they refused to discuss with you?

A&U • APRIL 2019

photo by Russell Yip / San Francisco Chronicle

I encountered no resistance at The Chronicle. My editors, from editor-in-chief Audrey Cooper to the editors working day to day with me, were all extremely supportive of the project and willing to grant me the time and resources I needed to report it.

Among the men we featured almost nothing was off-limits. A few men had specific requests for things they told me on background and did not want published, but none of those things was APRIL 2019 • A&U

directly related to their stories. I was surprised, and impressed, by the lack of resistance from the men we profiled.

They understood the importance of sharing their full stories, even parts that were incredibly private and painful.

I know how difficult it is, emotionally, to write about such content. Did you encounter any emotional difficulties stemming from the subject matter?

There were times when I was deeply

affected by the stories, especially when the people I was interviewing cried or struggled to talk. On two or three occasions I was worried about people’s physical or mental health and felt compelled to reach out to them in a way I ordinarily wouldn’t as a journalist. But for the most part it wasn’t as emotionally trying as one might assume. I felt so incredibly honored to be a vessel for these important stories. Even when the stories were sad and painful, I understood that these men were grateful to

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have an audience, and I recognized the responsibility I had to share their stories.

The one time I did become very upset was when I learned that Peter Greene, one of the eight men, had died. He was such a warm, funny, insightful man. I’d recently spent a great deal of time with him and come to know him very well.

The only negative comment I have ever heard about the article was, “Where are the women?” Why are there only men in this story?

I’ve heard that complaint— it’s totally valid. But I think we made the right decision to include only gay men. Early in my reporting it became clear that the gay men I spoke with had a similar story about how AIDS had impacted their shared community. The women I interviewed had stories that were equally compelling, but very different from the gay men’s stories. There just wasn’t a good way to weave the Reporter Erin Allday sits in Supervisor Jeff Sheehy’s office while listening in on a phone call in San narratives together. Another factor is that, in San Francisco, Francisco, California, on Tuesday, March 13, 2018. the story of HIV/AIDS is prisocial media than I could keep track of. ism publications as examples of exciting marily a story of gay men, who made up The story was among the most-read of work happening at newspapers. more than ninety percent of the victims of the year at The Chronicle, and even now, the epidemic. three years later, I still hear from people Considering the passion you poured into who are reading it for the first time. Both the story, I can’t help wondering if you What kind of response has the article generated? the story and documentary were written might have been inspired, in part, by a The response was incredible. I had hundreds of emails and more hits on up in a couple different national journalpersonal experience of AIDS.

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photo by Gabrielle Lurie / San Francisco Chronicle

Once you had finished the interviews, how long did it take to write the article?

I finished the bulk of the interviews toward the end of July 2015, and then spent a couple weeks organizing my notes and developing an outline. Then I went on a three-week backpacking trip—I totally checked out of the story and cleared my head. When I got back, feeling refreshed, I started writing.

In two or three weeks I came up with a draft that was twice as long as the published story.

That’s when the most challenging work started—editing and revising. We edited from October through February. It was grueling work.

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photo by Erin Brethauer / San Francisco Chronicle

A few days before the print section was published, Erin Allday, wearing page proofs like a hat, goes over final edits with the Chronicle team. Nearby are Michael Gray (middle), managing editor for enterprise and investigations and one of the main editors of “Last Men Standing” and Danielle Mollette-Parks, art director, who designed the supplement.

I was born in the 1970s so I grew up with AIDS. It shaped my views on sex and relationships and even LGBT culture.

In 1988, my grandfather, Grandpa Fred Allday, my dad’s dad, died of AIDS[-related causes]. He lived in Sacramento for most of my life, while my family lived in Southern California. I didn’t know him well but he came to visit the family once a year. He was tall and independent and laughed and smiled all the time with me and my sister. Around 1985 or 1986 he had triple bypass heart surgery. I remember visiting him in the hospital not long after the surgery, and he already seemed so strong again.

During that surgery he received a blood transfusion with [blood containing HIV].

He was soon diagnosed with AIDS. His symptoms came quickly. Within a year or two he moved to Southern California to live with my uncle. We saw him more frequently then, but those visits were fraught. I was old enough to understand that you couldn’t [acquire HIV] from sharing a bathroom or drinking from the same cup or hugging or holding hands, but also old enough to APRIL 2019 • A&U

understand that my mother was worried about me and my little sister. Watching him die in such a brutal way—it was scary. I was thirteen when he died.

At the time, I was fully aware of the AIDS epidemic both as a massive national issue and a very personal one, but I didn’t connect the two. I felt sad about losing my grandfather, but it didn’t feel like my family’s grief was part of any larger grief.

Nearly thirty years later, if one of the men asked me if I had any personal connection to AIDS, I told them about my grandfather. But I didn’t volunteer this information—as a journalist, I know not to make a story about myself. Also, my loss felt like it had very little to do with the men I was interviewing—like it wasn’t the same disease at all, somehow.

On World AIDS Day in 2015, George Kelly organized his first Project Inscribe, commemorating the day with children from the Harvey Milk Civil Rights Academy writing the names of people who had died on Castro Street sidewalks [A&U, November 2016]. I went to the Castro that day because some of the men I’d inter-

viewed would be there. I thought it might yield some insight into their stories.

I was chatting with one of those men when a little girl walked up and asked me if I had a name she could write.

Without thinking, I said “Yes.” She led me to an empty panel on the sidewalk and asked me his name and his favorite color. I told her, Fred, and blue. She wrote his name in bright blue chalk, the letters tall and thin, filling up the space, which made me smile because my grandfather had been so tall and thin. I just stood there for a long time staring at his panel, and suddenly I was crying. There was my grandfather’s name among all those other names. It was the first time I ever felt his loss as one among many, and it was so comforting. That moment still comforts me three years later.

Read Ms. Allday’s important article at https:// projects.sfchronicle.com/2016/living-withaids/documentary/. At the same link, you can view the documentary “Last Men Standing”

by Erin Brethauer and Tim Hussin for free.

To host a community screening or share the film in a public or educational setting, please contact erin.brethauer@gmail.com.

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Sex Is Our Birthright Chuck Forester Revisits the Early Epidemic in His New Novel

by Raymond Luczak

B

Tell me about your early days in San Francisco.

I moved to San Francisco in January, 1972; my son was born four months later. I came out a year later. In the early 70s San Francisco was gay Nirvana. A thousand men arrived every month to live freely. The Castro was a neighborhood of strangers, and we were learning how to live as gay men. Following in the steps of the Bob and Carol and Ted and Alice straights in the 60s, I was free to be whoever I wanted to be, and I could have

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sex whenever I wanted it. I smoked dope, and I experimented with LSD and psilocybin mushrooms. The middle class had abandoned the city, so we moved whenever a better place became available. South of Market after dark was a playground with leather bars for the serious as well as for the sisters. The men at the Stud opened their minds with LSD and turned sheds behind Victorians into hobbits’ cottages. There was a bathhouse for the suit crowd and another bathhouse for the young and frivolous; the penultimate pleasure palace was the Hothouse that was designed for serious sex by serious sex players. Around Castro Street gay bars popped up overnight like mushrooms. The bartenders at the Midnight Sun and Moby Dick were overnight rock stars, and Toad Hall on Sunday had a line round the corner of horny hoodie-under-denim jacket

men. There was a bar for blacks and there was another bar for the nothing specials. There were seventy-seven bars in the city and the twenty-two baths were scattered all over.

Today the city is too expensive for the artists and the outcasts who had made it a haven for the imagination when I got here.

People still go to work on Muni and the cars are always crushed at rush hour, and it’s even harder every year to find a place to park, but I live here because I love contributing to the city’s sophisticated scene. What I loved the second I got here and still hold dear but miss the most is the joyful optimism of the early 1970s. Minutes after I crossed the city line and bought my bellbottom jeans, I believed that since my generation had stopped segregation in the South and stopped the war in Vietnam, gay liberation was the next logical

photo by Seth Forester

ecause I’d grown up in the Upper Midwest, as in Michigan’s Upper Peninsula and northern Wisconsin, I was always interested in learning of LGBT writers from my area. I was thrilled to learn that Chuck Forester had come from the Upper Midwest, and that he has a brand-new novel Eat, Sleep, Love, which involves the early days of the AIDS epidemic, coming out soon from Querelle Press.

Raymond Luczak: What were your growing up years like?

Chuck Forester: I grew up in Wausau, Wisconsin, where winter lasts six months and there were as many Catholic churches as Lutheran churches in town, but I was raised Unitarian. From as early as I can remember, I wanted to get out of town and live in a big city. My older brother regularly beat me and told me I’d never be a man. My family was upper middle class, and starting when I was in eighth grade, my family and a wealthy family began spending a great deal of time together, so I had four parents, two blood siblings, and four non-blood siblings until I went away to college. After my first year at Dartmouth, my mother married the husband of that couple and my father married his wife.

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step, and that by the time I died, I’d be living in a peaceful world of love and caring. I still believe everyone can be better.

Tell us about your growing awareness of the new AIDS epidemic.

In 1980 a friend came back from Hawaii where he’d gone to catch up on sleep. I dropped by and he said he was out of breath when he climbed up from the beach the second day. He slept the rest of the time he was on the Islands. I was part of the team who brought Tommy meals and stayed with him overnight. He died of a disease that no one had ever seen. I heard the rumor that six men that shared a summer rental in Fire Island Pines had all died of a mysterious disease and it was linked to gay butt sex, so I knew something weird was going on.

I flew to L.A. to see my friend Jerry after he moved there from New York where he ran the kitchen at the Guggenheim Museum. He was opening his own café on Santa Monica Boulevard. I met him at his bungalow. He said he’d been tired but once he had enough energy, he’d be back at work. He also died of a mysterious disease. I was a member of the Board of the Human Rights Campaign Fund (now known as the Human Rights Campaign).

At my second board meeting in 1981 before the virus was identified or AIDS had a name, the board debated whether HRCF should get involved with the issue of men’s health or stay with our emphasis on civil liberties. We chose the former but I had no idea that the community was facing its biggest challenge.

I’ve been HIV-positive since 1978 and somehow I knew that I wasn’t going to get sick, not something you tell friends who are dying. I stopped going to memorial services, but each of the more than eighty friends who died continues as part of my soul.

In the middle of the epidemic I led the campaign to fund a first-ever gay and lesbian center in San Francisco’s new Main Library. We made clear from the start that we didn’t want a dime that would go to an AIDS organization.

Our initial goal was $1.3 million, greater than any goal by a LBGTQ group at that time. In the end we raised $3.5 million because $1,000 donors would have their name and their partner’s name on a plaque in a public space for a hundred years. The only other way our names would be that public then was on an AIDS quilt. I wasn’t cut out for street activism, but the library campaign gave a grieving community hope for the future.

What’s the most important thing you’ve learned about HIV/AIDS? Before there was a test for the HIV virus I knew I was infected, and I made a pact with the virus: if I die, you die, and for forty years APRIL 2019 • A&U

the virus has kept to the pact. Blood is shed in every revolution, but instead of the blood of our revolution being shed in the street or on the battlefield, ours was shed in poorly-staffed and overcrowded emergency rooms and in the beds that we shared with our lovers. AIDS profoundly changed the community; we grew up and sex is now scary. The community that I knew when I came out burst with hope and joy because the men of my generation were free for the first time in our lives. Because AIDS didn’t discriminate, when the people that made decisions for the nation learned that their gay son died, they discovered that gay men are no different from other men.

Today AIDS is a treatable disease and some men see being infected as the mark of a real gay man while others see it as a pesky inconvenience, but AIDS reshaped every gay man’s sexual universe. For those who remember AIDS, it’s the mantle of history that we carry the rest of our lives. Our response to AIDS proved to the world that we did a better job than they did educating the community and devising caring ways of taking care of our own. With AIDS we claimed our stake as legitimate Americans and as living breathing human beings.

What has helped you survive as a person living with HIV? My mother Betsy started every day fresh and what happened the days before didn’t matter. That may have been what got me get through the most harrowing years of my life.

I went to countless fundraisers for AIDS organizations and donated generously to them.

For two years I helped Michael my partner of eighteen years die hoping to the end that he would live. Michael planned an elaborate fiftieth birthday party for me at the John Pence Gallery. The party was to be a surprise, but he told me about a week before because he’d had to ask friends to address the invitation envelopes because his hands weren’t strong enough to write. Michael died the day before the party. One of Michael’s great loves was hosting a dinner and never wanting to be acknowledged, so I went ahead with the bittersweet party. After the big name guests left, a group of close friends and I held hands in a circle and I remembered Michael with my eyes closed. By staying active I hope I’ve been a role model for infected men.

Just how autobiographical is Eat, Sleep, Love?

The main character Charlie McKey has many of my urges, and he’s as smart as me.

Like me he’s promiscuous, he avoids arrogant people, and he distains men who aren’t courteous. We differ in our upbringing. Charlie was raised by an absent California father close to the poverty line, and I was raised in

an upper middle class fractured Wisconsin family. In a way Charlie is the kid I wanted to be because he ran away from home when he was nineteen while I waited until I was twenty-eight, married, and had a son before I came out. I hope that I’ve conveyed the jubilant spirit of the times I’ve lived.

What do you hope readers will come away with after reading Eat, Sleep, Love?

Gay men need to get back to enjoying sex. One of the greatest pleasures in my life was sex, and I want the younger generations to know that there was a time in our history when gay men weren’t embarrassed by our bodies, a time when we loved exploring each other’s bodies, and a time when we thought of sex as a celebration of life. We have passed the dark days of AIDS, but I want the men who follow me to know there was a time when San Francisco was a city of strangers like me, and I was amazed that such a city of freedom could exist while everywhere else gay men were locked up and murdered in the name of the Lord. I want the readers of my novel to know that sex is our birthright as gay men and a gift to be nurtured. Our sex can be recreation so we don’t need to be afraid of sex. A chapter in the novel describes what Charlie believes makes a sex date great fun and memorable.

AIDS sent gay men into bunkers. I want readers to climb out of the bunker and discover that life can be joyful and that touching each other is powerful medicine. Life is short, so get off your phones and enjoy life’s splendors. Push yourself!

Raymond Luczak is A&U’s Fiction Editor. He interviewed writer Nicola Griffith for the March issue.

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Persistence and faith took Evvie McKinney from background singing to the winner of The Four

by Candace Y.A. Montague

photographed exclusively for A&U by Sean Black

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n February 18, 2018, the first season of the Fox network, primetime singing competition The Four: Battle for Stardom was coming to a close. Four finalists had performed their hearts out hoping to be win a spot in the iHeartMedia’s “On the Verge” artist development program, receive coaching from the industry’s top producers and get their music airplay across iHeartMedia radio stations. It was a rapid competition with only eight episodes airing on Thursday nights. As Diddy announces “the winner of this challenge is,” Evvie McKinney’s face is stoic. When her name is announced, she folds over and cries. She made it. Evvie was the winner of season one.

What was behind those tears? What has she endured at just 21 years of age? Evvie McKinney is a rising star who doesn’t mind paying her dues and

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gladly gives credit where it’s due.

“It’s in my blood” Evvie McKinney was born the youngest of seven children on June 27, 1998, in Memphis, Tennessee. She’s a proud Southern belle who beams with pride when she mentions growing up there with that sweet Southern twang. She describes her mother, Maria McKinney, as a strong woman who reared her children as best she could.

Her father was a gospel and blues singer named Tony McKinney. In spite of his battles with drug addiction, Evvie fondly remembers him being the rock of her family who kept her focused on her faith.

“My dad struggled with drug addiction but he was always a believer. So he instilled faith in me from when I was a little girl.

When I was four or five years old I would sit on his lap. He would ask me ‘who you love?’ And I would say ‘you’. But he would ask me again and again until I said Jesus

first and then him.” Tony McKinney died on December 30th, 2005. Evvie says losing her dad deeply affected the McKinney family, “it was kind of like a halt was put on everybody’s lives. Everything was different and it would be for the rest of our lives.

Still, to this day, I cry when I think about him. I think about him every day.”

Although the McKinney family struggled there were two constants in their midsts: God and music. Evvie grew up singing in the church. Her brother Gedeon had a band called Gedeon Luke and the People which Evvie frequently joined in on. Gedeon says that Evvie has always been a benevolent girl with big dreams.

“Evvie was always an open minded person.

She always listened to all of her sisters and brothers. That’s probably why she was so successful. Growing up she was very sweet, very smart, focused. She always knew what she wanted.” Coming from a household where talented people sang and played A&U • APRIL 2019

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instruments, Evvie was destined to be on stage. “It’s in my blood,” she exclaims.

Made in Memphis Evvie’s hometown is a fascinating dichotomy: a playground for entertainment and a battleground for justice. Memphis, Tennessee, is a city where blues, jazz and rock and roll intersect. A city along the Mississippi River that houses Graceland, the Rock and Soul Museum and the famous Beale Street where music serenades the crowds daily. Memphis is also a municipality steeped in Black history. The National Civil Rights Museum is hosted at the Lorraine Motel, the site of the assassination of civil rights icon Reverend Dr. Martin Luther King, Jr. The McKinney family started life in Orange Mound, a neighborhood in southeast Memphis. It was the first neighborhood in Memphis built for and by African Americans.

Crime, drugs and blight stunted the community’s growth during the 1980s and 1990s. But in the 2000s Orange Mound started rebounding.

In 2001, when Evvie was five years old, her mother wrote a 500word essay to Habitat For Humanity to apply for a home. Her wish was granted just as the family was being evicted from their place in Orange Mound. The McKinneys moved to Nutbush, a neighborhood located in north Memphis. Evvie recognizes that her living situation was less than ideal but it never shook her faith. “I grew up in the projects. I grew up in the hood. But one thing my family has always acknowledged is the word of God.” From “no” to The Four Evvie was no stranger to the competition circuit by the time she auditioned for the show. She had tried to get on The Voice, American Idol and The X Factor multiple times. Her mother would drive her from tryout to tryout hours away from home.

“I would get all the way through the process to the point where they put you in front of the camera and record your audition. But I always got a ‘no’,” she recollects. In August 2017, while she was touring with Frayser Boy and Boo Mitchell, a family friend called her and asked her to try out for this new show called The

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Four. She was weary of competitions by this point but decided to give it a shot. “He connected me to this executive producer named Nicole Marion. We talked on the phone. She gave me the concepts of the show. She said if you’re interested send over some videos.

So when I got back to Memphis I recorded some videos and sent them in. And I never heard back from her.”

The tour continued on and Evvie moved right along with it not giving another thought about The Four. In November 2017,the Frayser Boy tour went on break and Evvie returned to Memphis. Shortly after returning home, the tour manager called Evvie and told her they couldn’t afford to bring her back on the show when it started again. “I was telling him I had put two months aside for the show. I couldn’t book any other gigs because I already booked these months with them. And he was telling me that he couldn’t even afford to pay me. So how was I supposed to pay my bills for January and February.” She was devastated but not defeated.

Evvie continues, “Let me tell you how God works. When I got off the phone with him she emailed me and asked me to send some videos in. Baby, I put on my makeup, I put that camera on and I did those auditions for her.

And she said ‘ you are amazing.

I am presenting you tomorrow to the executive producers of the show.’ And when she said that I kept praying because I knew that God was taking me into something that was farther than what I could see or understand. But I knew that if He brought me to it He can bring me through it.”

Her adhesion to her faith paid off in a big way. Days later she received a plane ticket to Hollywood to audition in person. After returning home, she received the call. “My producer called me and said “pack your bags. You’re going to Hollywood.’”

She came in on the fifth episode and gave an “electric” performance in front of Sean Diddy Combs, DJ Khaled, Meghan Trainor, and Fergie. “They saw APRIL 2019 • A&U

something in me. They really enjoyed it.

Whenever I feel like I’m going through something I remember where God has brought me. Sometimes a ‘no’ isn’t really a no for good. It’s just a no for right now. So if God gives you a ‘yes’, can’t nobody say no.

No matter how much they want to God will always come through for you. You just have to believe and keep the faith.”

Heroes in the struggle Memphis has certainly not been missed by the HIV epidemic. According to AIDSVu.org there were 6,202 people living with HIV in 2016 in the city, eighty-four percent of whom were Black. Black females are 13.8 times more likely to be living with HIV in Memphis than White females. The state of Tennessee has very strict rules surrounding sex education in schools. Sex education must stress abstinence and can only host limited discussions about contraception and sexually transmitted disease prevention. A law passed in 2012 that allows parents to sue instructors who stray from the abstinence curriculum. Evvie says she learned about HIV in health and wellness class during her high school years. They learned about condoms. Her biggest takeaway from that class was learning to just “be careful.”

As a performer on the lineup for the Black AIDS Institute’s annual Heroes in the Struggle Awards Ceremony in December 2018, Evvie learned much more about HIV and the people who live with it every day.

“When I went to the AIDS benefit I heard so many stories about how people who had HIV and so many testimonies. One thing that really touched me was that they all had kinda the same story about how people treated them because of something they had. It really touched my soul,” she recalled.

She said she felt inspired that night. “These are people who are living with something that could possibly kill them. But God is making a way for them. Those are some very strong and special people. Just being there in that atmosphere and taking in all the information that I heard about the black community having HIV and AIDS and a lot of people having it and they don’t know. It really inspired me.”

Empowered Evvie Gedeon Luke describes his sister as a big person. “She loves God and she loves people. Her main focus is Jesus Christ and she’s always looking after her neighbor.

Her neighbor is anyone who comes to her.

She is very generous.” Her positive spirit seems to draw in the audience. But it’s her love for God that empowers her and she thinks all women should share that same

spirit. “Women’s empowerment starts by knowing that you are loved by God first and foremost. We have to be careful with comparing ourselves to other women. You don’t know what kind of insecurities they have or what they’ve been through. But look at yourself in the mirror and say God chose me to look the way I look, have the hair I have, the eyes I have, the lips I have. I am fearfully and wonderfully made in Jesus’s name.”

Evvie has had strong, effective female role models in her life starting with her mother. She’s also admired trailblazing female singers like Aretha Franklin, Tina Turner, and the Staple Singers. Evvie may be young in age but her mindset is old school. She boldly explains how gender roles make women dynamic. “It wouldn’t be no world if it weren’t for women. God gave things to a woman that he didn’t give to a man. The man pays the bills. He is the provider. He makes sure everything is all right. We make sure that everyone is okay.

We cook and clean. We have the children.

We give birth to the nation. We are the nurturers.”

Family is also something that empowers Evvie to go on in her pursuit of her dreams.

She says that although they may not all be in Hollywood with her they keep her grounded from afar. “We are a very spiritual family. My mother and grandmother have been soldiers for Jesus for a long time.

They know the word of God. They send me scriptures. They pray for me. They call me.

They know that I am on a vigorous path.

They remind me of God’s grace.”

What’s next?

Her first album is in the works. A release date is unknown for now but Evvie is working hard in the studio and accepting her new life in Hollywood gracefully. Her confidence and self-awareness are unfailing. “Me being a twenty-one-year-old Black woman I’m learning that no one will believe in Evvie the way Evvie believes in Evvie. I can call DJ Khaled or Diddy, or Meghan but if I don’t believe in me that’s when it gets dangerous.”

One thing is for sure: the lady has grit.

And now that her foot is in the door she won’t quit until the world knows who she is and what she stands for. Get ready for Evvie rising.

Follow Evvie on Instagram and Twitter @evvie_music.

Hair/Make-up: Juan Alan Tamez @boomkackmua.

Candace Y.A. Montague is an award-winning freelance journalist based in Washington, D.C. Her work has been featured in a number of print and online publications including The Washington Post and The Washington City Paper. Follow her on Twitter @urbanbushwoman9.

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S choosing

LIFE An Intrepid Advocate, YA Author Shaun David Hutchinson Encourages Readers to Protect Their Mental and Their Sexual Health

by Dann Dulin

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uicide. Who hasn’t thought about it during one of the darker moments of their lives?

Shaun David Hutchinson, author of queer books for young adults (YA), did more than think about it. He took drastic steps to manifest his wish. At nineteen, Shaun was struggling with coming out and suffered severe depression. To relieve tension, he would slam his fist through walls, and cut himself, as well.

A student at Florida Atlantic University, Shaun was living in the dorms. It was spring break and he decided to not go home and continue to work at a nearby mall.

For several years he had been retreating within himself. One bleak night he was wrapped in isolation, despair, and fear, feeling he’d never fit into the gay community, and that eventually he would die of AIDS. Shaun’s morbid thoughts turned to suicide. Swallowing sixty Tylenol, he slept for several hours then woke up, puking nearly uncontrollably on the bathroom floor. Eventually Shaun realized he wasn’t going to die, and called 911.

He lay in ICU for two weeks, nearly losing his liver, then spent another week in a hospital room, followed by two more weeks in a psychiatric hospital.

As Shaun reflects in his upcoming memoir, Brave Face: “I wasn’t depressed because I was gay. I was depressed and gay.” In Hutchinson’s book, We Are The Ants, Henry Denton cautions, “Depression isn’t a war you win. It’s a battle you fight every day. But the great thing about life is that it’s a battle you don’t have to fight alone.

Please don’t fight it alone.” Shaun sums up, “Mental illness is not something to be ashamed of, and asking for help is not a weakness.”

What came out of all his teen turmoil is that the self-proclaimed geek is now extremely passionate about suicide prevention, and is a heartfelt advocate for the suicide-prevention LGBTQ nonprofit, The Trevor Project, which incidentally was formed in the same month— in fact, a few days—of Shaun’s decision to off himself. As to his life being splashed onto the written page, he responds, “I’m extremely nervous for people to read it....”

Mr. Hutchinson did not kill himself, and this has afforded us the pleasure of his artistic gift! We have the opportunity to revel in his works of fiction; his ninth book, The Past and Other Things That Should Stay Buried, was released earlier this year. Other works include At The Edge of the Universe, The Five Stages of Andrews Brawley, The Apocalypse of Elena Mendoza, and fml. In two of his uncommon format books, Violent Ends and Feral Youth, Shaun collaborates with a barrage of other YA authors, stitching together one dramatic theme. Inimitable.

Shaun’s own life experiences are fodder for his books. Invariably what prevails in his teen stories are mental illness, loss, bullying, gay life, family, grief, and depression. These themes are all wrapped in diverse thoughtful characters, in Shaun’s own unique style of dark humor, and then topped off with a sci-fi twist that leaves an empowering message.

The award-winning author has captivated critics and has a faithful fan base that he’s passionate about, being acutely concerned that they

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photo by Chris Piedra

receive the most up-to-date education about HIV. Consider Shaun a big brother.

He has participated in various events including AIDS Walks, and, when it comes to giving, he solidly supports organizations that readily disperse HIV information out into the African-American community.

My conversation with Shaun took place over several months, during which time he made a major move, uprooting from Jupiter, Florida, to Seattle, Washington, where his gay brother lives with his husband.

Dann Dulin: How’s life in Seattle? Have you settled in okay?

Shaun David Hutchinson: Seattle is amazing, Dann. Moving is one of the best life choices I’ve ever made. There’s a sense of community there that I never felt in Florida. Often, South Florida is all the worst parts of a city—urban sprawl, traffic, too many people—without any of the cultural benefits. There are more independent bookstores in a three-mile radius of me in Seattle than are in all of South Florida.

Way cool. I know mental health advocacy is important to you, so could you please share with our readers anything you want about your suicide attempt?

My brain was a mess at the time. I hated being gay because I didn’t feel like I fit into the gay community. I looked down on them while simultaneously wishing I could be a part of it. More than anything, I just wanted to not be gay anymore.

You decided to do yourself in with Tylenol.

It was dumb in more ways than one.

Tylenol won’t kill you quickly. Instead, it poisons your liver, causing you to slowly die in excruciating agony. None of which I knew at the time. After I took the pills, I expected never to wake up again.

In all of your novels, did you ever write about HIV or the global epidemic?

I haven’t. Because of the way the threat of HIV and AIDS hung over my life when I was younger, making sex something that many gay men in my generation feared, I worried about doing the same to teens growing up now.

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photo by Chris Piedra

What an absolute concept. After you were released from the hospital, how did you feel?

I got out of the hospital uncertain whether I was happy to be alive or not. The problems I’d had before attempting suicide were still there. It took a lot of years to really come to terms with what I’d done, to figure out who I was, and to embrace who I was.

I get it. When you think of the epidemic, what comes to mind?

Fear. Fear. Despite knowing that prevention and treatments have both come a long way, HIV remains a specter to me; the disease that kills gay men. Most of which probably has to do with coming of age when it was considered a death sentence. It gives me hope that, for many, that is no longer the case.

When did you first become aware of HIV? HIV seemed like one of those things that was simply part of my life, but I remember the first time it became real for me. It was in 1997 when I learned that my mom’s best friend, Terry, was HIV-positive. The disease shifted from being an abstract notion to something real. Something a person like me could be infected with. Something that was putting the community I was part of at risk. I was coming out when Terry died, which had a profound effect on my ability to tell my parents.

Sure, most certainly. Were you close to Terry?

I was nineteen and actually got tested because there was an HIV awareness drive happening on my college campus, and I figured I should go. It was terrifying, but there was also a part of me that assumed I was positive and that it was what I deserved. Obviously, I was pretty messed up at that age.

Ever date a guy living with HIV? I dated a guy who became positive after we’d broken up. We dated on and off for a couple of years when I was about twenty-four.

He was open with me right from the start that he loved sex and sleeping around, so we were always incredibly careful. He was educated when it came to safer sex, so it struck me as ironic when he called to tell me he’d contracted HIV. We hadn’t been together for a while, but I still felt the need to get tested, to be sure.

“I still thought of HIV as an eventual death sentence, but he was describing it as a manageable condition no worse than diabetes.”

Have you always used protection?

No. But after I got help and treatment for my depression, my attitude changed and I began using condoms every time. The only time I don’t currently is if I’ve been with someone a long time and we’ve both tested negative.

Where did you learn about HIV? Were you taught about prevention in high school?

I was not. Sex education was woefully lacking at my high school. For me, HIV-prevention was something I learned from the Internet and from other gay men I met after I came out.

Many I encounter say the same thing. How old were you when you first tested for HIV? APRIL 2019 • A&U

I hear your frustration. Indeed. Who inspires you in this pandemic?

The folks in the trenches who work to educate and protect young people; teachers who hand out condoms; and doctors and nurses who educate their patients on current preventative measures. They’re the people who help prevent the spread of HIV….one condom and mind at a time.

Safeguard, of course.

That was the closest I came to HIV personally, but I remember sitting with him later and talking about it. This was probably around 2003–2004, and he was so optimistic. Even though I knew treatments had improved dramatically, I still thought of HIV as an eventual death sentence, but he was describing it as a manageable condition no worse than diabetes.

We were friends in the way that most kids are friends with their parents’ friends...vaguely.

He wasn’t someone I would have gone to for advice. Not that he wouldn’t have helped me, but I’m stubborn and hate asking for help, and it never even occurred to me to reach out.

and education they need.

As you know, in the teen and twenties population, unfortunately, they have high HIV infection rates. What’s your take on how to protect them better?

I think we have to stop treating them like children. We have to accept that young adults are going to have sex, and then do everything in our power to provide them the education and tools they need to keep them safe. We need to lower the barrier [for them] to [obtain] prophylactics and preventative HIV medications.

We fail young adults in so many ways in this area because we know this is a problem and we know how to fight it, but we make it so damned difficult for them to get the tools

Can you elaborate on your choice to donate to AIDS organizations that specifically reach out to the Black community?

In 2016, African Americans made up almost half of all the new HIV infections. I’m not an expert in all the reasons, but just as I believe our government has and continues to fail Black Americans in a significant number of areas, it has failed them in education, and in access to testing and treatment. That’s something I’d like to see change.

Agreed—a lot needs altered in this area.

What do you wish for, Shaun?

I really hope a near-future generation will come of age and not have to fear sex the way we did, and that they’ll appreciate and remember all those who died…and can live in a better world.

Read the full interview at www.aumag.org.

Get booked with Shaun at: www.shaundavidhutchinson.com.

Dann Dulin is a Senior Editor of A&U.

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Slaying the Debt Dragon

by

Alacias Enger positive reinforcement is the first step

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In an earlier column, we started discussing repayment strategies. Some people call them by names such as the “debt snowball,” the “debt avalanche,” or the “debt tsunami.” Regardless of what you call each strategy, it’s important to choose one that fits your personality. Last time, we focused on repaying the debt with the highest interest rate first. This month, we’ll cover a slight variation of this strategy.

The Smallest Balance First This is for people that have either been experiencing a lot of negative emotion surrounding their debt, or those who consider themselves to be driven by emotion. This strategy is designed to begin repairing your relationship with money by allowing you to see progress very quickly, thus triggering positive emotions that directly correspond with financially responsible behaviors.

First, gather your most recent credit card statements. Jot down the balance, interest rate, and minimum payment.

Arrange them into a list starting with the smallest balance at the top, followed by the next smallest balance, and so forth until the largest debt is at the bottom.

Continue to pay the minimum payments on all cards every month. Pay extra

on the card with the smallest balance.

Anything remaining in your budget should serve to pay it down every month. You’ll probably be able to pay this first one off pretty quickly which will help to build momentum. Had you started with your largest balance, you might get frustrated and give up. By paying off something small first, you quickly score an emotional win.

Once the first card has been paid off, the amount that was being applied to it monthly is automatically applied to the card with the next smallest balance. Keep repeating this process until all credit card debt has been eliminated.

There are exceptions to consider when selecting which card to repay first. If any of your credit cards are causing you more stress than the others, perhaps start with it before moving on. Also, any cards with introductory rates are time sensitive and should be tackled first.

Next, we’ll discuss emergency savings accounts so as to avoid adding more debt in the future. Remember, you can do this.

Your first win is just around the corner.

Alacias Enger is a performing artist, writer, and educator. She lives with her partner in New York City, and is the founder of blogs “Sense with Cents” and “Travel Cents.” Follow her on Twitter @sense_w_cents.

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illustration by Timothy J. Haines

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ccording to a 2017 survey by Career Builder, nearly 3 in 4 workers claim to be in debt, and more than half of them believe that they always will be. What a hopeless feeling: to feel like you’re in a bottomless pit and that you could never dig your way out. But how did we get here? This same survey found that a staggering seventy-eight percent of U.S. workers are living paycheck to paycheck.

If you’re among this seventy-eight percent and living with HIV/AIDS, one bout with the flu could leave you in a state of financial emergency. While the Family Medical Leave Act (FMLA) will protect you against job loss in such situation, it does literally nothing to offer protection from your dwindling or nonexistent paid leave time. In other words, you might have a job to come back to, but no paycheck in the meantime. Cue entrance music for Mr. Visa! This is where Mr. Visa comes waltzing in, offering his services. The next thing you know, you’re charging your bills and vowing to worry about it later.

You try to forget about it, that is, until the credit card bill arrives in the mail, and you anxiously tear it open. It’s common to feel a sense of shame about your debt.

This feeling is quickly exacerbated by the little chart printed at the bottom of your credit card statements. You know the one they’re required to print that explains to you that if you simply make the minimum payment, you’ll be paying it for the next 7,000 years? Okay, I’m exaggerating, but it doesn’t really matter. It could say, seven years or 7,000 years. It’s all the same. It just adds to the anxiety you’re already feeling, and that’s a dangerous space to be in. When we connect negative emotion to our relationship with money, it can feel easier to do nothing than it to deal with it.

Anyone living with HIV/AIDS has enough demands being placed on their money.

Mr. Visa doesn’t need to be one of them.

Furthermore, the stress and anxiety that comes along with the debt makes its price tag too high. It takes a toll on our mental and physical wellbeing, and absolutely has to be eliminated. If any of this sounds familiar, it’s time to slay the debt dragon once and for all.

Full Access

examining a legal victory for incarcerated pennsylvanians with hep C

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photo by Holly Clark

ith the advent of antiretroviral drugs, a cure for hepatitis C has been available for six years, but who can actually access this lifesaving, and expensive, treatment has been a battle fought out in courts and legislatures. One group that’s been, in many cases, on the losing end of that battle is the incarcerated.

But in Pennsylvania, that’s set to change. Late last year a legal settlement filed in federal court for the Eastern District of Pennsylvania will provide direct-acting antiviral drugs to 5,000 incarcerated Pennsylvanians with the hepatitis C virus (HCV). Access to this treatment, beginning with the most advanced cases and extending to everyone with HCV in prison by mid-2022, will make HCV care in Pennsylvania prisons better than what’s available to people on Medicaid in some states.

The ruling results from a four-yearlong class-action lawsuit filed on behalf of inmates who were denied HCV treatment for years until their health deteriorated.

Plaintiffs alleged that corrections violated their rights under the Eighth Amendment prohibition of cruel and unusual punishment.

I spoke with Stacey B. Trooskin, MD, PhD, MPH, director of the Viral Hepatitis Program at Philadelphia FIGHT and a professor at the University of Pennsylvania’s medical school, and asked her what this ruling means for those in corrections with hepatitis.

Dr. Stacy Trooskin: This is an important settlement because it means persons incarcerated in Pennsylvania will receive the current standard of care. It’s also important for public health. If we are going to eliminate hepatitis C as the health issue that it is, we must offer treatment for those living with the virus and for people who are at high risk of transmitting the virus. In this country drug use is criminalAPRIL 2019 • A&U

ized, and for that reason, in prisons there is a disproportionate number of people with substance abuse disorder.

Pennsylvania corrections rationed care for the plaintiffs, meaning they would only treat them when they got really sick. Is this a common approach?

It varies on the type of facility, federal or state.

There is the Federal Bureau of Prisons with guidelines, but state prisons often adopt their own guidelines. The one thing many correctional facilities have in common is not to adhere to the current standard of care, which is to offer a cure to those with hepatitis C. What you are likely to see is rationing of medication and a strict set of criteria they have to meet in order to be eligible for treatment. For example, they may have to have evidence of advanced liver disease or substantial scarring to the liver. They may have to meet requirements such as abstaining from drug use or tattoos or sex, which in a prison setting may not be consensual.

Moving beyond the prison setting, what are you seeing in the population locally?

Philadelphia, like much of the country is in the middle of an opioid epidemic. We have a whole new generation that is getting infected.

We know that after one year of injecting drugs, thirty percent will become infected (with HCV), and after five years as much as seventy percent will be infected.

What’s being done to prevent new infections?

Needle and syringe exchange and harm reduction programs are a necessary part of hep C prevention and reinfection prevention.

In Philadelphia we have an amazing organization called Prevention Point Philadelphia, or PPP, and they do an extraordinary job making sure people have access to clean syringes and other services for people with substance abuse disorder. Nationally we need to see a major scaling up of harm reduction programs and needle exchange access.

Not every place is as lucky as Philadelphia. There is PPP in Pittsburgh, but in the state, nothing else sanctioned or funded.

Can providers do more in terms of prevention?

As providers, it feels better to shake our fingers and say “you should never use drugs,” but they already know that. We need to make them understand that they shouldn’t reuse or share a cooker or cotton or water that a partner used to prepare a hit.

We try to provide some of that information to keep our patients safe. Many times the providers don’t have all of that information.

We need additional education for providers so that they understand the exact steps of drug use that put patients at risk.

Every drug treatment program in the country should test people for hepatitis C. Here, for every new patient it’s part of the initial labs that they get an HIV test and a

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JAK of All Trades

researchers look to JAK inhibitors as part of hiv treatment & eradication

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ecent research on three Janus kinase inhibitors (JAK inhibitors) explored the effect of this class of drug on both viral reservoirs and HIV-associated neurocognitive disorders (HAND). The central nervous system (CNS), which consists of the brain and the spinal cord, is believed to be a viral reservoir for latently infected CD4 cells. HAND occur in the CNS and is reported to effect 30–50 percent of people living with HIV. There are three forms of HAND, which range from severe (HIV-associated Dementia), with extremely debilitating symptoms, to mild: Asymptomatic Neurocognitive Impairment (ANI), with symptoms recognizable only on neuropsychological tests. People with a third, mid-range form of HAND (Mild Neurocognitive Disorder) can experience a loss of memory, and difficulty in concentrating, decision-making and/or maintaining attention. HAND can have a significant effect on a person’s ability to live a productive and independent life.

Chronic low grade inflammation and immune activation is often seen in people living with HIV and is believed to be responsible for numerous age-related co- morbidities, including HAND. It also can be predictive of subsequent morbidity and mortality despite suppressive antiretroviral treatment. In other words- even if a person is virally suppressed on ARVs, low levels of inflammation can still occur that contribute to these conditions and which can be life-threatening and/or debilitating.

Reducing or eliminating this inflammation may decrease the occurrence and/ or severity of these conditions.

JAK inhibitors are a class of drugs that are used in the treatment of several different diseases, mainly to reduce inflammation. Ruxolitinib, tofacitinib and Baricitinib are JAK inhibitors that are currently in use for other indications and may hold some benefit in reducing HIV-related inflammation and thus HIV comorbidities. Researchers are looking at the effects of JAK inhibitors on reducing inflammation, as well as a

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functional HIV cure.

An ongoing AIDS Clinical Trials Groups (ACTG) study of Ruxolitnib as an add-on to ART is exploring whether this drug can decrease inflammation in people living with HIV. Ruxolitnib is FDA-approved to treat myelofibrosis, and has been shown to reduce inflammation which could help prevent or reduce HIV age-related diseases. The study hopes to determine whether a limited course of Ruxolitinib can reduce inflammation, in turn reducing the risk of HIV-related comorbidities and at the same time “reset the immunologic balance in favor of less immune activation and inflammation” and have“an impact on HIV reservoir cells that are able to turn on after ART is stopped and infect other cells.”

Tofacitinib is approved in the U.S. to treat ulcerative colitis as well as moderate to severe active rheumatoid arthritis in patients who have had an inadequate response to, or who are intolerant of, methotrexate.

Baricitinib is a second-generation JAK Inhibitor that is approved in the EU and Japan for rheumatoid arthritis.

FDA approval of Baricitinib for RA is pending in the United States.

Research conducted by Christina Gavegnano, Ray Schinizi and a team at Emory University has shown that JAK inhibitors may be beneficial in reducing the size of the HIV reservoir. An in vitro study published in 2017 found that tofacitinib and ruxolitinib reduced the frequency of cells which harbor integrated viral DNA in CD4 T cells, block seeding and maintenance of HIV reservoirs and prevented transmission of infectious particles to bystander activated T cells, as well as block expansion in primary monocytes/macrophages.

The most recent research by the Emory University team studied baricitinib in mice to determine its effect on HAND. Barcitinib’s ability to reverse HAND is due to its potent anti-inflammatory properties, and its ability to block HIV replication and reactivation in primary macrophages and microglia. The team hypothesized that blocking HIV inflam-

mation with baricitinib in addition to reversing HAND, might lead to a purge of the viral reservoir and that this would result in a functional cure or elimination of HIV-1.

Researchers found that baricitinib crossed the blood-brain barrier and improvements in cognitive impairment were seen in the murine HAND model (SCID mice) with the introduction of Baricitinib. The groups also found that Barcitinib blocked: • HIV replication in primary human macrophages and microglia-like cells • HIV reactivation from macrophages harboring latent HIV • HIV-induced activation of primary monocytes and macrophages Despite this potential benefit, JAK inhibitors come with a degree of risk. This class of drug has been known to make it more difficult for the immune system to fight off infection. In addition, there is an increased risk of certain cancers, high cholesterol, high triglycerides, kidney dysfunction, and liver function abnormalities. Whether that risk is subverted with limited use as in the ACTG trial or other functional cure research studies of these drugs, is unclear from the studies’ description. Despite this possible risk and due to promising study results, JAK inhibitors are gaining momentum as a potential curative agent and more studies are needed to further explore it’s use in both decreasing or eliminating inflammation to treat conditions such as HAND as well as a potential curative agent.

Special thanks to Kelly Morgan for providing research on this topic.

Jeannie Wraight is the former editor-in-chief and co-founder of HIV and HCV Haven (www. hivhaven.com) and a blogger and writer for TheBody.com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in New York City.

A&U • APRIL 2019

E R U CULT THE

S D AI OF

FILM

Target Zero

Directed by Mary Potsako MedCine

photo courtesy MedCine Estrada/FOX

T

arget Zero: Preventing HIV Transmission looks at how the array of HIV meds are preventing new infections between HIV-positive mothers and their infants as well as the use of PrEP to prevent infection between sex partners.

The documentary uses award-winning animations to show how HIV infects T cells and how various HAART medicines block different stages of its deadly life-cycle.

Target Zero is broken into three parts; two focusing on HIV-positive pregnant women and the third on the mostly young men getting prescriptions and follow-up care for PrEP. Carmen’s Second HIV Pregnancy Carmen’s first pregnancy a few years earlier, reminds us that it wasn’t that long ago that many healthcare providers remained ignorant of the options for HIV-positive pregnant women. “I had gone to a clinic and I asked the nurse, since I’m HIV-positive does that mean the baby’s going to come positive, she said ‘well yeah, you share blood, of course he’s going to come HIV-positive’ and at that moment I remember breaking down.” Luckily Carmen went on to get competent medical care at another clinic where the doctor reassured her that they could prevent transmission to her son.

We follow the team at the MCA Clinic in L.A. as they help her and her fiance’ maintain the drug regime and testing needed to prevent their infant daughter’s infection.

Ella: A Hard Road The second segment looks at Ella, who recently became HIV-positive while living on the streets. We see her more complicated story as APRIL 2019 • A&U

she works to overcome addiction, find housing and make sure she maintains a complicated HIV regime to keep her baby HIV-free.

Remember the Dark Ages Target Zero is its most compelling when some of the Los Angeles-area medical providers speak of how helpless they felt in the early days of the pandemic. “For the first fifteen years of the epidemic it was kind of like being a first responder at a train wreck,” Dr. Michael Gottlieb, Associate Professor at the David Geffen School of Medicine at UCLA, says, adding that he felt helpless. “I can’t tell you about the countless young men, who were my patients who died of AIDS before effective therapy was developed.”

The first HIV drug, AZT, did little to help those infected as the virus quickly mutated away from the single-drug regime, but in 1994 it was approved for use in pregnant women, which Dr. Alice Stek, Director of Perinatal Services, MCA HIV Program at LAC-USC Medical Center, says was a game changer. “This regimen of AZT during pregnancy and during delivery and to the baby for six weeks, we were able to reduce transmission by two-thirds. That was really remarkable, the people that are in training right now, they have no idea what things were like then.” Since then multiple drug HAART has reduced that to a one-percent infection rate among women who adhere to the program.

PrEP Using HAART to prevent mother-tochild transmission also led to the relatively new use of mainline HIV drugs to prevent

sexual transmission in the uninfected.

Physician Assistant Rochelle R. Rawls is helping a new generation of young gay men and others avoid infection by using PrEP. It’s a process that goes beyond simply dispensing the medicine. “We’re here not to cure it, because there is no cure, but to start healing. A process that not only starts on the cellular level, but starts in the heart, starts in emotions and wounds that have been open in your life for years.”

Dr. Gottelieb sums up the feelings of many of the healthcare providers in the documentary, who have watched a fatal, mysterious disease be contained by science and the brave work of activists and health providers. “I’ve been fortunate enough to see things get better, from the dark ages when people died daily and I remember people back then who so very much wanted to survive. I used to say that my wish was to go gray with my patients and amazingly that wish came true.”

Target Zero: Preventing HIV Transmission is primarily intended as a teaching tool for medical students and providers.

It can be streamed on Vimeo (check out targetzerofilm.org, as well).

—Mel Baker 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.

45

A Calendar of Events

T

he Center of Excellence for Transgender Health (COE) at the University of California (UCSF) has announced plans for the 2019 National Transgender Health Summit (NTHS), the biannual national conference on transgender health. This program presents cutting-edge research, evidence-based education sessions, and training opportunities across many disciplines. The summit is designed for community-based and non-profit organizations, trans-owned businesses and organizations, healthcare organizations and businesses, granters and funders, and university and college personnel.

On April 12, 201, COE will present a Pre-Summit Conference by the Transgender Medicine, Surgery, and the Mental Health Care Clinician Training Institute. The Preconference will be offered as an add-on to the NTHS at a reduced rate.

The ultimate goal of COE is to improve the health and well-being of transgender individuals by creating and implementing programs that respond to community-identified needs. COE incorporates community perspectives through a national advisory body (NAB) of fourteen transgender leaders from around the country, including Oakland’s Cecilia Chung. The collective experience of COE’s diverse NAB ensures that that the programs address issues that are timely and relevant to the community.

The 2019 NTHS aims specifically to increase healthcare and social services providers’ skills to optimize HIV prevention, treatment, and care for transgender patients, and to provide a professional forum for disseminating best practices, innovative techniques, and cutting-edge research to providers of transgender health and HIV prevention services.

The 2019 NTHS will be held at the Oakland Marriott City Center, 1001 Broadway, Oakland, California 94607; phone: (510) 451-4000.

For more information about the conference, email transhealth@ucsf.edu or log on to: http://transhealth.ucsf.edu.

46

A&U • APRIL 2019

APRIL 2019 • A&U

47

n o it

FICTION

c W fi

by Geer Austin

Russell

hen Russell Glickman died, sometime in the mid-eighties, he and I were completely out of touch. I’d seen him once or twice after we left college, even returning to campus with our mutual friend Daisy and him for an alumni weekend.

What does it mean when a lover says, “Let’s just be friends?”

I’ve used the phrase a few times, and I usually say it to soften the rupture of a sexual liaison, as if to say that everything will remain the same except we will no longer have sex with each other. When Russell unleashed the phrase on me, it meant less than that: no kind of friendship bloomed, partly because he moved to California while I stayed in New York. I heard he quit dancing and worked as a physical therapist. Daisy gave me updates. I learned about his passing in a telephone call from her. I think she expected me to cry at the news, but I didn’t. “That’s so sad,” I said, and I started talking about something else.

Daisy brought the subject back to Russell, suggesting that we drive up the Taconic Parkway to Bard where a memorial service would be held in the college chapel, an Episcopal church used mostly for poetry readings and concerts. Actually it wasn’t a suggestion. It was an order from a self-appointed grief counselor. I was suffering from AIDS aftershock; the deaths were piling up and leaving me numb. That was my reason for not crying over Russell’s demise, Daisy explained.

At the service, Russell’s parents sat in the front row dressed in severe black clothing that looked specially purchased for the day.

Most of us wore our usual bohemian garb, which included a lot of black. I had decided it would be absurd to wear a business suit to memorialize someone who always wore overalls, so I wore a pair of blue jeans, thinking denim would be a fitting homage.

The service began with a brief introduction by Russell’s best female friend, Amy, who had dressed for the occasion in a black sheath and pumps. Her bleached hair hung down to the small of her back, and she kept sweeping tendrils of it away from her face as she laid down the ground rules of the memorial service: anyone who wanted to speak, read, sing or play an instrument should approach the altar in turn.

The first speaker talked about Russell’s overalls, saying how perfectly they suited him, and how she had always wondered if he wore the same pair every day or if he had multiple pairs. Someone else sang and played the guitar, a song composed for Russell. Daisy told a story about performing in one of Russell’s dance pieces in which he made her bite into an uncut head of cabbage and how she’d been afraid her teeth would break on it, but had been too cowed by his perfectionism to object, how he had been a rigorous yet inspired choreographer. I wanted to tell everyone about Russell teaching me how to give a blowjob when I was twenty years old, but eying his parents in their pew, some of Russell’s former professors and bunches of my college friends, I kept my mouth shut. Still, remembering Russell being an exacting choreographer of that intimate dance, I chuckled somewhat too loudly, just as the teller of a tale, one of Russell’s many women friends, choked up and burst into tears, holding her face in her hands. Daisy elbowed me so hard in my ribs that I wondered if there would be a bruise. “I’m sorry,” I

48

whispered, “but Russell loved to laugh. He’d be laughing right now if he were here.”

After the speaker left the altar, Amy took her place at the front of the church and told a story about her and Russell binging on a box of Whitman’s chocolates that one of her boyfriends had given her for Valentine’s Day. It had occupied a place on top of her bookshelf for months before Russell spied it, ripped it open and gobbled a chocolate. Amy joined in eating and they polished off the entire twopound box and felt sick to their stomachs. “So Russell, the supreme vegetable-eater, could go way off track at times,” she said. “That was him. Dashing from one extreme to another, never boring.”

Mrs. Glickman, the final speaker, followed. She looked much the same as I remembered her from twelve years earlier, but her face was more worn and she seemed exhausted. Mr. Glickman played a secondary role, sitting in his pew with his head lowered. Mrs. Glickman’s first words were, “We are Jewish, and we don’t believe in an afterlife. So we won’t be seeing Russell again.” She paused and looked around the chapel with its crosses and stain glass scenes of Jesus in mid-crucifixion and almost seemed to shudder. “Russell loved this place, this college, more than anywhere he ever lived, including our house in Maryland, where I brought him home from the hospital after he was born, and where we still live. I have to say he was always a little different. In high school he wanted to be a dancer instead of a football player. He loved many of his friends intensely, but never found a partner. He was intellectually curious and quite brilliant, but never was a high achieving student. I think he came here and found others like him. That’s why he loved this place. That and the natural beauty. I like to think he was part of that beauty, because he was such a gorgeous boy. I know there are many people here who loved him, and please be aware, we loved Russell as much as any of you. We were his parents. He was our son.

We were very proud of him, and we will always miss him.”

Mrs. Glickman stepped down from the altar, sat next to her husband and stared straight ahead. She didn’t cry, although some members of our congregation were crying. She didn’t acknowledge her husband.

At that moment there was an enormous flash of lightning and a crash of thunder that seemed to rock the chapel. Several of us screamed. Then there was a torrential downpour.

Amy stood up and shouted, “That was Russell saying you will see me again. That was Russell telling us not to be so maudlin. That was Russell shaking us up. That was Russell saying, gorge on chocolate and fall over laughing!” And a lot of people did laugh because Amy jabbed her index finger at the ceiling like an evangelist, and her blond hair swung wildly around her head as she shouted. Everyone started talking with their neighbors, opening up and offering informal recollections of time spent with Russell, and we all loved each other for the moment.

When the rain stopped about twenty minutes later, we walked down a lane to the Hudson and spread Russell’s ashes on a bluff overlooking the water. I choked up a bit when I saw his ashes, intermingled with tiny bits of bone, hitting the ground. “Goodbye Russell,” I murmured. Daisy slipped her arm through mine, and we both started to cry.

Geer Austin’s poetry and fiction has appeared in anthologies, print and online journals, including Big Bridge, Poet Lore, Potomac Review, and Manhattanville Review. He is the author of Cloverleaf, a poetry chapbook (Poets Wear Prada Press). “Russell” is excerpted from a novel-in-progress.

A&U • APRIL 2019

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

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

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

What Is Mytesi?

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

Possible Side Effects of Mytesi Include:

Tired of planning your life around diarrhea?

Enough is Enough Get relief. Pure and simple. Ask your doctor about Mytesi.

Mytesi (crofelemer): • Is the only medicine FDA-approved to relieve diarrhea in people with HIV • Treats diarrhea differently by normalizing the flow of water in the GI tract • Has the same or fewer side effects as placebo in clinical studies • Comes from a tree sustainably harvested in the Amazon Rainforest What is Mytesi?

Mytesi is a prescription medicine that helps relieve symptoms of diarrhea not caused by an infection (noninfectious) in adults living with HIV/AIDS on antiretroviral therapy (ART).

Important Safety Information Mytesi is not approved to treat infectious diarrhea (diarrhea caused by bacteria, a virus, or a parasite). Before starting you on Mytesi, your healthcare provider will first be sure that you do not have infectious diarrhea. Otherwise, there is a risk you would not receive the right medicine and your infection could get worse. In clinical studies, the most common side effects that occurred more often than with placebo were upper respiratory tract (sinus, nose, and throat) infection (5.7%), bronchitis (3.9%), cough (3.5%), flatulence (3.1%), and increased bilirubin (3.1%).

For Copay Savings Card and Patient Assistance, see Mytesi.com

Please see complete Prescribing Information at Mytesi.com.

NP-390-9

RELIEF, PURE AND SIMPLE

• Upper respiratory tract infection (sinus, nose, and throat infection) • Bronchitis (swelling in the tubes that carry air to and from your lungs) • Cough • Flatulence (gas) • Increased bilirubin (a waste product when red blood cells break down) For a full list of side effects, please talk to your doctor.

Tell your doctor if you have any side effect that bothers you or does not go away.

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

Should I Take Mytesi If I Am:

Pregnant or Planning to Become Pregnant?

• Studies in animals show that Mytesi could harm an unborn baby or affect the ability to become pregnant • There are no studies in pregnant women taking Mytesi • This drug should only be used during pregnancy if clearly needed A Nursing Mother?

• It is not known whether Mytesi is passed through human breast milk • If you are nursing, you should tell your doctor before starting Mytesi • Your doctor will help you to decide whether to stop nursing or to stop taking Mytesi Under 18 or Over 65 Years of Age? • Mytesi has not been studied in children under 18 years of age • Mytesi studies did not include many people over the age of 65. So it is not clear if this age group will respond differently. Talk to your doctor to find out if Mytesi is right for you

What Should I Know About Taking Mytesi With Other Medicines?

If you are taking any prescription or over-the-counter medicine, herbal supplements, or vitamins, tell your doctor before starting Mytesi.

What If I Have More Questions About Mytesi?

For more information, please see the full Prescribing Information at Mytesi.com or speak to your doctor or pharmacist.

To report side effects or make a product complaint or for additional information, call 1-844-722-8256.

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