A&U December 2018

DECEMBER 2018 • ISSUE 290 • AMERICA’S AIDS MAGAZINE

RECLAIMING OUR TIME

• Rep. Maxine Waters • The AIDS Activist Project • Henry Goldring • Paul Thorn • Dr. Glenda Gray

plus

• Fiction by Michael E. Sawan • Poetry by Monica Carroll

greg OWEN

The U.K. PrEP Advocate Aims for Universal Access

What is BIKTARVY®?

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

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

IMPORTANT SAFETY INFORMATION

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

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

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

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

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

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

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

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

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

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

Ask your healthcare provider if BIKTARVY is right for you.

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

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

KEEP MOTIVATING.

Because HIV doesn’t change who you are.

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

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

IMPORTANT FACTS

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

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

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

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

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

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

• Are pregnant or plan to become pregnant.

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

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

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

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

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

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

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

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

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

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

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

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

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

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

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

c o n t e n t s December 2018

48 Cover Advocate Greg Owen Talks with John Francis Leonard About His Work to Provide British Citizens with Full Access to PrEP and the Need to Make Sure That All Communities Are Connected to Care

Departments

Features 6

Frontdesk

8

Digital Footprints

14

NewsBreak

12 Fiction Mustang Ray by Michael E. Sawan

18

Ruby’s Rap

22 Diary of a Modern Consumptive Writer & Long-Term HIV Survivor Paul Thorn Tackles TB

21

Second Acts

25

Bright Lights, Small City

29

Our Story, Our Time

32 Gallery Photographer Bill Bytsura Pays Tribute to AIDS Actvists

30

My Turn

10 Poetry Copper Blue Carrier Protein by Monica Carroll

viewfinder

lifeguide 55

Money Matters

56

Access to Care

57

Hep Talk

40 House of Hope Congresswoman Maxine Waters Puts Housing & Healthcare First

58

Destination: Cure

59

Under Reported

60

Brave New World

44 Lighting the Way Singer/Songwriter Henry Goldring Creates Music to Live By

61

The Culture of AIDS

62

Lifelines

64

Survival Guide

36 Vibrant Gray Physician & Researcher Dr. Glenda Gray Keeps the Fight Alive

cover photo by Sean Black

Did You Know?

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

Takes Creative Risks to Empower Others

MAY 2018 • ISSUE 283 • AMERICA’S AIDS MAGAZINE

JUNE 2018 • ISSUE 284 • AMERICA’S AIDS MAGAZINE

SUMMER 1993 & AFTER LOUIE VIEW GENERATIONAL LOSSES THROUGH DIFFERENT LENSES

FRONT

RUNNERS

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

*plus

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

FILM FESTIVAL

*plus

Wilson Cruz

The Dedicated HIV Advocate Champions Youth Activism

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

JANUARY 2018 • ISSUE 279 • AMERICA’S AIDS MAGAZINE

HIV IS NOT A CRIME

Trevor Hoppe Talks About His New Book, Punishing Disease

Melissa Rivers

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

EVEN ME

LaWanda Gresham Inspires Others Living with HIV to Seek Support

*plus

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

• Gina Brown

david

Arquette

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

To make sure your clients don’t miss another insightful and thought-provoking issue of A&U, subscribe online at aumag.org

A&U Frontdesk

Day Without AIDS

D

ay With(out) Art (December 1) used to be the one day of the year that was universally recognized as the opposite of business as usual: galleries covered up their works of art and even entertainment venues from Broadway to the West End in London turned off their marquee lights to record the colossal loss of thousands of members of the theatrical community, and of mega rock stars like Queen’s Freddie Mercury and Hollywood leading men such as Rock Hudson and Tony Perkins.

One year they even turned off the famous Hollywood sign for a few minutes. But then came protease inhibitors and all of a sudden scores of men, women, and children were—like Lazarus in the Bible— able to get back to living again!

The same acting community (Elizabeth Taylor comes readily to mind) that had helped raise millions to fund the discovery of new drugs to overcome the silence of presidents and the outright homophobic hostility from members of the United States Congress led to the grassroots founding of thousands of nonprofit organizations, both large and small, to house, feed and care for over a million Americans living with HIV/AIDS. But then something strange happened on the way to a cure.... AIDS was no longer deemed a compelling health crisis. AIDS ribbons were no longer part of the glamorous dress code of the big awards shows. These days it’s unusual to see the once-ubiquitous AIDS ribbons at awards ceremonies (Emmys, Tonys, Grammys, Oscars and more). One Hollywood pundit put it this way: “Let’s auction off a few of those jewel-encrusted AIDS ribbons from yesteryear and we might fund a cure for AIDS.” AIDS is still a compelling health crisis for many, but strides have been made to conquer it, too. Although we still don’t have a cure, we do have an amazing new preventative tool: PrEP. The PrEP movement and the U=U mantra have broadcast the news that the acquisition and transmission of HIV is all but impossible for those who are on the prevention regimen and those who are undetectable, respectively.

Whose activism and leadership can

AMERICA’S AIDS MAGAZINE issue 290 vol. 27 no. 12 December 2018 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner

be thankful for? This month’s cover story, Greg Owen, the British PreP activist who was handsomely photographed by A&U’s Sean Black and interviewed by John Francis Leonard, is the man of the moment; he doesn’t take “ no” for an answer from governments and pushes for other health insurance providers to cover this humanitarian and proven lifesaver. In the activist’s own words, the end of AIDS is entirely possible if we test, treat and prevent. With PrEP becoming increasingly accessible, it’s only a matter of time for HIV to be eradicated in some of the hardest hit communities. For a young man who proudly shares his birthday with Princess Diana, and is inspired by her own unflagging brand of royal activism and support of the gay community, “the interesting thing for me, being the new kid on the block, is that there is a real problem here [in the U.K.] with late diagnosis and the black, African community is within that demographic… in the future if we continue to see the drop in MSM over the coming years our jobs will still be really hard, it’s suddenly going to be an epidemic for women and people who have sex who aren’t aware of the risks.”

But Owen is engagingly modest about his brand of activism: “I’m paying my dues to the people who came before me when there was no hope and nothing much to hope for. They did their best in very trying circumstances.” As we work toward a future Day Without AIDS, we honor in this issue those who have fought valiantly and died (see Gallery’s spotlight on the AIDS activist photographs of Bill Bytsura) and those who have long been in the fight and continue to persist: long-term survivors like Henry Goldring, researchers like Dr. Glenda Gray, and advocates like Maxine Waters and Phill Wilson. Take a moment to read their stories and learn why the future cannot be dimmed.

DAVID WAGGONER

Managing Editor: Chael Needle Senior Editors: Dann Dulin, Sean Black Editors at Large: Chip Alfred, Hank Trout Special Projects Editor: Lester Strong Arts Editor: Alina Oswald Poetry Editor: Noah Stetzer Fiction Editor: Raymond Luczak Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, T.J. Banks, Larry Buhl, Ruby Comer, George M. Johnson, John Francis Leonard, Candace Y.A. Montague, Connie Rose, David Rosenberg, Corey Saucier, Stevie St. John, Justin B. Terry-Smith, Patricia Nell Warren, Jeannie Wraight, Rob Zukowski Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Tim Courtney, Duane Cramer, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Michael Kerner, Tara Lessard, Tom McGovern, Scot Maitland, Nancy Perry, Alex Ray, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011

In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 • Chris Companik, 1957–2012 Nancy Ellegate, 1959–2015 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 122102743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2018 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/ international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof.

PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 122102743, USA

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

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★ ★ ★ ★ ★ ★ ★ ★ Hollywood ★ ★ ★ ★ ★a party and is having ★ you’re invited. ★ a&u joins Jussie Smollett and the★Black

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Hollywood Task Force★on AIDS to invite you to ★

HEROES ★IN THE ★ STRUGGLE ★ GALA RECEPTION ★

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★ AND AWARDS PRESENTATION Benefitting the Black AIDS Institute

World AIDS Day December 1, 2018

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

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s t n i r p t o fo mosttweeted @au_magazine

Interviewed

by John Francis Leonard and photographed

by Senior Editor Sean Black, Our Lady J talked about writing and producing the TV show Pose and why trangender and HIV storylines are so vital to our lives.

mostloved on INSTAGRAM

@au_americas_aids_magazine One of our newest contributing photographers, Scot Maitland, garnered praise for his images of HIV advocate John Wikiera in the November issue. Scot shot John at the New York City AIDS Memorial, and the choice could not have been more perfect for a long-term survivor who has not forgotten those who are no longer with us.

Our Lady J pphoto by Sean Black; Book Project photo by Roy Wilkins; John Wikiera photo by Scot Maitland

digital

mostshared @AmericasAIDSMagazine Hank Trout’s interview with the creators of The HIV Book Project, Phillip Shipton and Roy Wilkins, for November’s Gallery allowed our readers a glimpse into life with HIV/AIDS in Australia.

The stunning photos resonated with our readers and proved that we are a global community.

@AmericasAIDSMagazine 8

@au_magazine

@au_americas_aids_magazine A&U • DECEMBER 2018

R T

POETRY

E O

COPPER BLUE CARRIER PROTIEN

P

I’m walking my dog from the low afternoon sun to make a donation. I can’t donate, but my pet can. The first time, he was afraid. Those ghost-smells of pain and chosen death beneath the latex layers and steely disinfectant. I told my dog everything would be ok; he often tells me the same when his furry brow furrows and his mutt-head tilts. To distract us, Dr Peter says octopus blood is coloured blue. He shaves a fur patch from my dog’s foreleg saying, hemocyanin. After, we walk to the sunset, through the park, past the pondducks. My dog has learnt not to bark. All things can be trained.

—Monica Carroll

Monica Carroll writes speculative poetry about the possibilities of health breakthroughs and barriers. She holds a PhD in philosophy and poetry. Her research focus is bodily pain and empathy. Her widely published speculative prose and poetry includes the book Isolator (Recent Work Press 2017).

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A&U A&U• •NOVEMBER DECEMBER 2018

SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN

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

n o it

Fiction

c i I F

Mustang Ray

by Michael E. Sawan

’m not one for beautiful days, so take it on faith that this one was a real peach.

The type of day where kids think clouds are made of something sweet. The type of day where you may as well not be wearing clothes. The type of day to sell the worst car on the lot to your worst enemy. It was May 6, 1993, I remember it like yesterday, and beauty was the only good thing about it.

I was prowling the showroom after lunch, between the Ranger and the F-150.

I can’t remember ever having sold a car right after lunch, everyone being too fat and happy to make such a decision. So, I’d stroll and smile, nodding at the carousers, not bothering anyone. Then who do I see but an old friend of mine from another life, Ray. He looked thin, and when we shook his grip was weak: “Long time, right?”

We exchanged pleasantries, he talked like he was okay but I couldn’t get over how ragged he looked. Ray used to be a stack of dynamite, 200 lbs. of muscle, always had a beer in his hand and a woman in his arms. Back then I was up for anything and Ray stamped my visa to hedonism; parties, drinking, drugs, women, it was all so long ago but it sticks with me. I used to say I would do it all again.

Even then that was all in the past, and I had a quota so I asked: “You in the market?”

“I guess, I don’t know.”

“You don’t know?” I parroted, powering on. “Maybe you’re just here for the free coffee!”

He didn’t laugh. “Would you let me drive a Mustang, maybe? Something fast.”

Here’s the thing: we were still shaking hands. I remember the clamminess, how his chill oozed into me. It’s long been my tenet to grip a man’s hand slightly tighter than he grabs mine and I always wait for him to break the shake first. Turned out that my old friend Ray had no intention of letting go. So, there we were, standing in the middle of the Ford dealership, conjoined.

“Hell yes!” I said. “I’ve got just the thing for you, these foxbodies are something else, five-liter engine, 225 horsepower—” “Yeah that’s great.”

We would have held hands clear out to the lot if I hadn’t broken him off.

Ray wasn’t the worst driver I’d seen. I hate to admit it but he drove like me when I’m arguing with my wife: too quick to shift

12

up, too fast on the clutch. I cracked a couple of jokes about it but he was cold. I was 95% sure there’d be no sale when he decided to truly dip in to the day’s horror.

“This isn’t easy for me to say,” he started.

I joked, but he brushed it off. “Look, I wanted to drive the car, but I knew you worked at that dealership. I wanted to talk to you. Because I don’t have anyone else anymore and I know you knew me at a bad time and you’d hear me out now, too, and I remember how you used to make me think all of the BS in the world was nothing and….”

Ray rambled and I let him. Don’t let his recollection fool you, I didn’t ever listen to him. Why should I, when all Ray ever needed was to tucker his mind out?

Wasted patience, sure, but then Ray ran a stop sign. Then he took a hard turn in third gear, at a red light, not even a rolling stop, then he had a straight away with the gas pedal pinned, thrashing that poor Mustang to within an inch of its life. And the craziest thing? All the while he was talking calmly.

About what, I can’t remember, but from his presence of mind he must have been describing a beach vacation. Finally, he stopped, cockeyed in the middle of the street, looking over at a Rite Aid and I reached over to the steering column and pulled out the keys. He stopped talking, looking at me for the first time with something that wasn’t malaise.

“Come on, man, I’m just letting the pony prance.”

“Prance on your own time! You’re driving like you’ve got a death wish.”

He finally laughed. It surprised him as much as me, a sheep bleating out before stuffing the sound back in. Then, with a speed that still surprises me, he snatched the keys from my hand, rammed them in, revved that car up to God knows where, and dropped the clutch.

“Like I’ve got a death wish?” he yelled, making a decent harmony with the tires’ screeching. Never in my life had I wanted to see a cop so badly.

Ray kept screaming: “Remember that time we got loaded and climbed the Sunoco...”

I was pressed into the seat, my eyes bulging. I must have looked like the last chicken before the butcher block. “...we were up there half of the night, talking about ‘what it all means,’ all of that...”

I mean, we were whizzing past Walmart,

McDonald’s, 15 Geos and still not one cop in sight. “...I hate to say it but I’ve got the answer:” Suddenly I saw him, a little bit behind: the blue and red lightshow, I heard the siren.

“It’s to be afraid every moment of your life until you find something real to be afraid of.” He had seen the cop, too, and slammed on the brakes. I should have gotten out and measured the skid marks.

“We had fun,” he said, stone cold. “We shared women, we shared smack, everything. And it’s probably nothing but you should get tested.”

Tested? My first thought was of my daughter’s entrance exam at St. Francis Elementary. Then I remembered the headlines.

“You’re probably fine,” he continued.

“You must be fine, you haven’t been wild like me in a while. But get yourself checked out.”

And that was it, that’s what he wanted to say. He hadn’t taken his hands away from the steering wheel. He turned away from me, eyes glazed, straight ahead. Even in my memory I can’t stand the silence. So, I asked what I already knew: “Get tested for what?”

He must have heard me. I asked him however many more times but still he stared, face forward until it wasn’t and he’s looking at me kindly, without smiling. The cop was knocking at his window but Ray stayed with me.

His expression is in my mind’s eye. The cop behind him, knocking again, the cars driving past, the gas station across the street, and behind it all the giant clouds sweetening the sky.

Ray took the ticket, I took the car, and he told the cop he’d walk home. I didn’t try to convince him otherwise and I regret it. When I saw Ray again he didn’t look anything like that Mustang of a man I once knew, didn’t look like he had lived at all; a face like plastic, the plush of the casket too soft, the quiet parlor the only thing that could have tamed him.

Michael E. Sawan works in Cincinnati, Ohio, for a down-on-its-luck mega corporation. He is unpublished. He uses his free time to write, read, and eat with people he cares about.

A&U • DECEMBER 2018

NEWSBREAK Sister Friends: Get PrEP’d “Sister Friends: Get PrEP’d,” a video series for PrEP awareness for women, launched on October 24 at the the California African American Museum (CAAM), bringing together healthcare workers, dignitaries and special guests to spotlight the HIV prevention option. The campaign hopes to make more women in Los Angeles County aware of a pill, which decreases the risk of HIV acquisition for sexually active individuals who are HIV-negative as much as 99 percent, when taken daily as prescribed. High levels of adherence for women (taking PrEP six days out of the week) confers protective levels in cervical and vaginal tissue.

Across the county, women living with HIV are predominantly African American (35.4 percent) or Latina/Hispanic (44.8 percent), as well as an estimated 30 percent of transgender women. PrEP has been shown to be safe for women who are trying to become pregnant or during preganancy, as well as during breastfeeding.

Medi-Cal, along with most health insurance plans, cover the cost of PrEP in California.

Dr. Leo Moore, a clinical scholar and acting medical Clockwise from top left: Dr. Moore and the series’ director, Sope director of the Division of HIV and STD Programs at Ogunyemi, are all smiles on the pink carpet for the launch; African the L.A. County Department of Public Health, is the guiding force behind the campaign. Loni Love, Daytime American women sign up for more information about the pre-exposure Emmy winner and co-host of The Real, as well as Alicia prophylaxis (or PrEP) pill Machado (Miss Universe 1996) and actress Alexandra Grey (Transparent and Glee), lent their talents to the video series.

To watch the videos and learn more about how to “Get PrEP’d, visit www.getPrEPLA.com/women.

The U.S. Food and Drug Administration (FDA) has approved pharmaceutical giant Merck’s Delstrigo and Pifeltro for the treatment of HIV-1 infection in adult patients with no prior antiretroviral treatment history.

Delstrigo is a once-daily fixed-dose combination tablet of doravirine (100 mg), lamivudine (3TC, 300 mg) and tenofovir disoproxil fumarate (TDF, 300 mg; Pifeltro (doravirine, 100 mg) is a new non-nucleoside reverse transcriptase inhibitor (NNRTI) to be administered in combination with other antiretroviral medicines. Both Delstrigo and Pifeltro are indicated for the treatment of HIV-1 infection in adult patients with no prior antiretroviral treatment experience and are administered orally once daily with or without food. Delstrigo contains a boxed warning regarding post-treatment acute exacerbation of hepatitis B (HBV) infection among other possible side effects.

The FDA’s approvals of Delstrigo and Pifeltro are based on findings from the pivotal, randomized, multicenter, double-blind, active controlled Phase 3 trials, DRIVE-AHEAD and DRIVE-FORWARD. In DRIVE-AHEAD, 728 participants with no antiretroviral treatment history received either Delstrigo or a different combination of antivirals. Delstrigo demonstrated sustained viral suppression through 48 weeks, meeting its primary endpoint. In the Delstrigo group, 84 percent achieved viral suppression of HIV-1. Of the 21 percent of study participants with a high viral load at baseline (HIV-1 RNA >100,000 copies/mL), 77 percent achieved HIV-1 RNA <50 copies/ mL at Week 48.

In DRIVE-FORWARD, 766 participants with no antiretroviral treatment history were randomized and received at least one dose of either Pifeltro once daily or another combination of antrivirals, each in combination with emtricitabine (FTC)/TDF or abacavir (ABC)/3TC. Some eighty-four percent of patients who took Pifeltro achieved viral suppression of HIV-1 RNA <50 copies/mL.

New PrEP Efficacy Data Fenway Health in Boston has released an analysis of patient data indicating that PrEP is an effective form of prophylaxis against HIV infection. They presented the analysis in an abstract at the HIV Research for Prevention (HIVR4P) meeting in Madrid, Spain on October 23, 2018. Founded in 2014, HIV Research for Prevention is the world’s only scientific meeting dedicated exclusively to

14

A&U • DECEMBER 2018

photos by Susan Goldman Photography

FDA Approves New HIV Treatments

newsbreak biomedical HIV prevention, including vaccines, antibodies, microbicides, treatment as prevention, pre-exposure prophylaxis (PrEP) and new forms of HIV prevention.

“We found that between 2012 and 2017, almost 4,000 patients initiated PrEP at Fenway Health, one of the largest groups in a single US health care system. The rate of new HIV infections was significantly decreased among patients prescribed PrEP compared to those who did not access PrEP,” said Kenneth H. Mayer, MD, Medical Research Director and Co-Chair of The Fenway Institute at Fenway Health and lead author on the abstract.

Of the 16,128 patients who underwent HIV testing at Fenway Health at least twice between 2012 and 2017, 25 percent, or 3,965, were prescribed PrEP. While 1.34 percent of the patients who were not using PrEP seroconverted, only 0.43 percent of those who were ever prescribed PrEP and 0.13 percent of those on a current PrEP regimen at the time of infection seroconverted.

“Most of the few patients who became infected after being prescribed PrEP had discontinued it because of either insurance issues, challenges in engaging in care, changes in their risk perception, or concerns about stigma. The study found that PrEP is effective in decreasing HIV incidence in a primary care setting, but social and behavioral issues need to be addressed to optimize its impact,” said Dr. Mayer. Only twelve of them had discontinued taking PrEP more than a month before becoming infected. Only five patients who reported recent PrEP use became infected, indicating that when PrEP is used regularly as prescribed, it greatly reduces an individual’s chances of acquiring HIV. The patients who were part of this analysis were all regular primary care patients at Fenway Health, a health center that has long-established expertise in caring for sexual and gender minorities. Thus, these results may not be the same elsewhere; that is, while the findings of this analysis demonstrate the effectiveness of PrEP among this particular patient population, the efficacy of wider application of PrEP will require much wider study, including addressing multiple behavioral and social issues impacting those who could benefit from PrEP. For more information, log on to: fenwayhealth.org.

photos by Alex Ray

Tribute: Larry Pettit, San Francisco, California Late night on November 7, 2018, a massive heart attack took from us Larry Pettit, one of San Francisco’s LGBTQ community’s most beloved “characters” and volunteers. His cousin Melissa Willets announced his passing on Facebook. He was seventy-three years old.

Larry moved to San Francisco from Nebraska during the late 1960s. He often told me stories about living here as “one of the original hippie queers” in the city. He loved San Francisco at first sight and stayed here well past the Summer of Love. He enjoyed telling people that he had lived in San Francisco for so long that “I’m not fit to live anywhere else!” as he continued to fly his freak flag with great pride!

Those values embedded in the Summer of Love are ones that Larry practiced every day and never let go of. He volunteered his services to organizations and causes around the city more than just about anyone I’ve ever known. Ms. Willets said, “I am most proud of him for being a ‘bleeding heart Liberal.’ He lived his beliefs. He fought for what he felt in his heart and would not back down.” His causes were wide and varied.

His friend Cole Benson remembers “meeting Larry at a 6:00 a.m. Standing Rock solidarity rally—surely that speaks volumes about his dedication to a better world.” Larry was known as a staunch supporter of rights for women. His Quaker background made him an adamant anti-war crusader.

Larry’s service to the LGBTQ community in San Francisco is unquantifiable. No matter whether it was cleaning up the AIDS Memorial Grove or helping to host an art show gallery; volunteering at Frameline (the San Francisco International Film Festival) or building houses with Habitat for Humanity, if something needed to get done, Larry was there volunteering to help. He was one of the busiest members of Bridgemen, a service organization sponsored by the San Francisco AIDS Foundation, and the Elizabeth Taylor 50-Plus Network, which he helped to found along with ET50+ Program Director Vince Crisostomo.

“I first met Larry Pettit in the nineties,” Vince told me. “That was the fresh start to what became a wonderful connection. Whatever the occasion and almost any event, Larry was always game to show up. He connected members of Wild Chats and other groups to 50-Plus. I could always count on him to tell me what was and was not working.

In 2015 when he turned seventy he said he had never had a birthday party and so on June 12, 2015, a group of 50-Plus and Bridgemen members arrived at Encore Karaoke on California to celebrate our friend and founding member. The one thing that he asked for was an ice cream cake, which he ate with great gusto. Earlier this year, I went to visit him and he needed a phone charger. So I gave him one, which he gratefully accepted. He said he would pay me back immediately. I told him to just consider it a thank-you for the many volunteer hours he put in and for always showing up. He said if he had known that he would have asked for something more! Then for whatever reason he brought up the ice cream cake. He said it was an act of kindness he would never forget.”

Vince concluded, “Rest in peace my friend. Wherever you are I hope there are ice cream cakes that you can enjoy and that you will smile on us. I will miss you.”

Like many of the other members of the Elizabeth Taylor 50-Plus Network, I have enjoyed several hours just sitting with Larry at our Saturday morning coffee gatherings, talking local politics, our aging, artists and poetry. Larry was a rare, intelligent, compassionate, generous man, extremely loyal to his friends and his Tribe and unapologetically a bleeding-heart liberal.

Goodbye, Larry. Saturday mornings just won’t be the same anymore.

—Reporting by Hank Trout DECEMBER 2018 • A&U

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by Ruby Comer

Alex Lau college, Alex was finally provided with the background that he was yearning for. He had a deep hunger to learn about the AIDS crisis, which preceded his arrival on this earth.

Currently, Alex works with SFAF and Strut (an all-encompassing health center extension of SFAF). Located in San Francisco’s Castro District, the center opened in January 2016. Alex not only volunteers there, he’s also a client. I was curious about the name but I got the 411 from Andrew Hattori, who works in their marketing and communications department. “The name comes from the word that means both a beam of support and a confident stride. As a center for many different kinds of services, Strut offers a system of support to our communities and at the same time encourages a sense of pride, strength, confidence, fun, and action.” Fun? I’m all in.

Nearly two years ago, when online, Alex met his partner David Broockman, a professor and political science researcher at Stanford University. He divides his time between David’s home in the Castro and his family home.

We are in Dolores Park on a windy fall afternoon, beneath a swaying palm tree.

The view is dazzling! This panoramic vista has been captured in many movies.

Ruby Comer: Congrats on your amazing accomplishment, Alex! [His broad infectious smile radiates.] Do tell about…your… journey.…

Alex Lau: He bursts with gusto.]

AIDS/LifeCycle was an amazing experience, Ruby! I registered as an individual, but I did get my coworker to join me as my tent mate, which made this a meaningful experience. …and $10,000. YIKES. How…?

[Alex chuckles.] I was very lucky to have generous sponsors. There were a variety of initiatives. At first, I advertised through friends and family first.

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I had a Facebook outreach where a lot of friends and coworkers donated. The biggest surprise was posting about the event on my Instagram [@alexlau]. I had donors from all around the country.

How rousing. [I cough.] Why did you want to do the Ride?

I was introduced to AIDS/LifeCycle through various social media outlets and through my friends who participated in past years. I wanted to learn more about this virus, its history and where we are today. In addition, I recognized that I wanted to challenge myself, gain new experiences, and also meet friends along the way.

Ruby illustration by Davidd Batalon; all photos courtesy A. Lau

$

10,000?? Did I hear correctly? This man raised over $10,000 for the AIDS/LifeCycle!

I’m parked for the weekend here in dreamy San Francisco, and I’m shooting the breeze with well, a dreamy guy, Alex Lau. Last night, a mutual friend introduced us at an event for the San Francisco AIDS Foundation (SFAF). I was instantly entranced by Alex’s spirit and zest for his inaugural ride with AIDS/LifeCycle this past June.

I’ve long been intrigued by the Riders I have interviewed over the years. So many years, in fact, that I stopped counting them like I stopped counting my birthdays. An inner magic seems to transpire in all those who take this journey. I’ve considered doing it myself, but, despite my regular attendance at spin class, I’m not sure this old broad is up for the challenge.

Alex, on the other hand, did it! A twenty-seven year old in insurance risk management, he was born in London and raised in this Golden Gate city and graduated cum laude from the University of San Francisco.

Alex started volunteering in high school at food banks and community centers, and at the AIDS Emergency Fund. It was in high school health education class that he first heard about the epidemic, but it was a superficial introduction at best.

Learning more about the epidemic in

All good reasons. Why did you want to know about your forerunners?

I think it was important for me, for my generation, because we never had to go through that struggle. I was very inspired after watching Dustin Lance Black’s [A&U, November 2018] When We Rise since it was that generation that fought for gay rights and for survival from the virus.

A&U • DECEMBER 2018

I wish every young person had your concerned drive. Did you have any fears about the Ride?

My greatest fear was about unable to complete the ride and/or getting injured during the ride. I really wanted to be able to successfully fundraise and to complete the ride. I was very happy to have succeeded.

potentially risky.

When you and David met did you guys talk about STIs? Did you test together?

We didn’t, as I go to SFAF, while he goes through his medical group. When we first started dating, we did talk about STIs, including PrEP. Overall, we are very low risk and we both have a mutual understanding regarding the importance of getting tested.

How did you get the physical and inner strength to do it every day?!

We averaged around eighty miles a day with the longest day being 110 miles. It was honestly challenging the first couple of days, Ruby, but I ended up being one of the first ones to the finish line on the final day.

You started your altruistic ventures at quite a young age. Where did those values originate?

I think growing up in the Bay Area community played a part, as volunteering was engrained in us when we were young.

You know, sometimes certain populations, like the Asian community, due to their culture, can turn a blind eye to certain things that don’t have a positive outward appearance. As you know, not facing facts can be detrimental. Can you address this?

The Asian community would benefit from more access to information regarding homosexuality and HIV, especially in their own language. They are still taboo subjects in some conservative families, but I think my generation is much more open-minded to queerness and has access to a wealth of information available online. I strongly believe that conservative communities will change their opinions incrementally over time.

I’m encouraged. Was anyone in Los Angeles to greet you at the finished line?

David and some friends.

I actually arrived at the finish line before them, so I had to backtrack and wait for them to arrive! I went faster than any other day.

I guess it was last minute adrenaline. When everyone arrived, I passed through that finish line.

What a monumental moment.

What was on your mind right at that time?

Honestly? [He tenderly finger-combs through his cropped black mane.] My first thought was I hope that they take a good photo of me! My second thought was that I’m so happy that my boyfriend and friends are here to support me through this life changing week.

What a grand finale! What was the most difficult period of your trip?

It was when I saw a rider get injured.

She scraped her arm slightly but continued riding. It gave me an opportunity to recognize the potential dangers of cycling, but also gave me a glimpse of the passion and the drive these riders have on this seven-day journey. I’m thankful that the ride staff emphasized bike safety from the moment you register for the ride to the time you cross the finish line!

So it’s been a few months since the Ride DECEMBER 2018 • A&U

From your mouth to God’s ear. What is your sense of stigma?

I believe that there’s a lot of stigma attached to HIV and AIDS—and PrEP, too. ended, looking back, how did the journey affect you?

It provided me with a safe space to express who I am with a group of peers with a singular goal. I learned a lot more about the epidemic, where we are today with treatment and what our goals are moving forward.

Bravo. How old were you when you first got tested, Alex? What kind of feelings did you go through?

I was twenty, and I wasn’t too worried, because I wasn’t sexually active at the time.

Even so, that feeling of waiting for the results always keeps me in suspense.

I didn’t have sex until I was in my twenties. Even then, I was extremely cautious, so I made sure both my partner and I got tested prior to doing anything

How so?

I have heard friends make jokes about PrEP. There are also friends that are afraid to talk about it in a group setting. At times, they will pull me aside to have conversations about it, because they know I am on the pill.

I really hope our community, better yet, humanity will one day recognize that pharma companies like Gilead and its Truvada as PrEP are changing the world for the better. [He breaks for a moment and then states in a crisp voice] With modern medication, perhaps we will get down to zero: zero new infections and zero deaths.

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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Bringing hearts together since 1998

HIV+ Owned Since 1998

Joaquín

by

illustration by Timothy J. Haines

M

arch is a month of mirth and melancholy for me. The mirth comes first, with my husband’s birthday on the first day of the month. But soon after, on the fourth, comes the anniversary of my mother’s death. Two more March dates are associated with a close friend, Joaquín Silva—born on the sixth, died on the twenty-ninth—thirty years ago—of AIDS. Deaths are something one can get past, but not over. My mother is still with me, every day, in some fashion, after more than a quarter of a century. So is Joaquín, though the relationship was quite different. We became close in the short time we knew each other—the last four and a half years of his life. We were eighteen years apart in age, and I met him not long after I had started my second adulthood—as a gay man.

He taught me much, and we experienced many things together. He introduced me to such cultural touchstones as the films of Pedro Almodóvar, the paintings of Francisco de Zurbarán, the saloon singer Sylvia Syms.

I took him to concerts and the theater and, in his last year, to Europe. We saw Follies in Concert together, one of the most thrilling theatrical experiences of his life. We saw Phantom of the Opera twice: in London and, seven weeks before he died, in New York.

Shortly before then, we shared an early performance of Into the Woods, whose late second-act song “No One Is Alone” would both comfort and haunt me.

I had developed an enthusiasm for the Paul Taylor Dance Company before we met, and it turned out Joaquín liked them, too. We attended a performance or two together. His favorite of Paul Taylor’s dances was “Arden Court”—less, I suspect, for the choreography or the music of William Boyce than for its emphasis on the shirtless, chiseled physiques of its primarily male ensemble.

My husband, Ray, square dances, and I don’t. I gamely gave it a try, and it just wasn’t for me. He gave it up for a while when we got married, to focus on doing things as a couple, just as I gave up my heavy schedule of culture consumption in favor of evenings at home with Ray and Netflix, and only the occasional weekend night out. A few years on, though, we decided we could give each

DECEMBER 2018 • A&U

Daniel Guss friendshp is a dance shared

other a “night off,” so on Tuesdays he dances, and I usually stay at home, though twice I’ve made it to the opera.

Early on, Ray attended a Paul Taylor performance with me, but it was just as much “not for him” as square dancing was “not for me”; thus, it had been several years since my last date with the Taylor company.

However, this season’s opening night fell on a Tuesday, and all tickets were five dollars. It also happened to be Joaquín’s birthday—he would have been eighty-two—and the program would open with “Arden Court.” With trepidatious anticipation, I bought a ticket.

What would I feel as I watched “Arden Court”—happiness, at seeing my favorite choreographer’s work again after so long a time? Sadness, at not being able to share it with Joaquín? Guilt, at being able to see it when he couldn’t? Fear, at the possibility that, after my having skipped several seasons, Taylor might not hold the same significance for me? Or—worst of all—nothing?

In the weeks leading up to the performance, it was questions like these that danced—no, ricocheted—in my head.

I entered the theater that evening a stranger, when once I had been part of the “in” crowd. Yet I fell into familiar patterns— examining the program to check up on the new dancers, and other changes (live music was a big one—the last time they had an orchestra, Joaquín was still alive). The lights dimmed; the conductor entered the pit (Donald York, as it had been three decades ago); the music started; the curtain rose.

Old habits kicked in again. For the duration of the dance, I observed. There were the trademark Taylor steps and patterns, as individual a stamp as a composer’s preferred rhythmic and cadential gestures. One dancer was new since the last time I saw “Arden Court”; how did his execution fare in comparison to that of his predecessors? (Harder to recognize individual dancers from the

greater distances in Lincoln Center’s Koch Theatre, versus the more intimate space of the company’s former home, City Center.)

How different did the choreography seem for being performed to live music?

The finale drew to a close, and the last dancer (the new one) exited exuberantly in what I (lacking the language of dance) can only call a tumbling crouch. The curtain fell, and my eyes filled with tears. It was over.

What had I expected? Joaquín had been with me constantly since I bought the ticket, but during those thirty minutes, it was just me, the music and the dance. “Arden Court” was one of my favorites mostly because it had been Joaquín’s; but I couldn’t watch it for him—I could only see it with my own eyes. Undoubtedly, he was there, in the recesses of my mind, as I watched it; but I didn’t need “Arden Court” to summon Joaquín to my consciousness.

Two more dances followed, both of which I had also seen numerous times. My perspectives on them hadn’t changed and, as they were composed long after Joaquín had died, I could only imagine the conversations we would have had about them.

I got home before Ray. When he arrived, I asked, “How was the dance?”

“Good,” he replied. After a beat, he asked, “How was the dance?”

Another beat.

“Good.”

Daniel Guss earned the degree of Master of Music, but is still a slave to it. He is a native New Yorker, a published composer, an avid culture consumer, and a recovering record company executive.

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Diary of a Modern Consumptive

In his new book, author & advocate Paul Thorn shares his personal experience surviving Multidrug Resistant TB

by Alina Oswald

O

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photo by Chris Giles Photography

n September 26, 2018, world leaders met in New York City at the United Nations to attend the UN General Assembly High-Level Meeting on the Fight to End Tuberculosis. The theme of this very first meeting of its kind was “United to end tuberculosis: an urgent global response to a global epidemic.”

As mentioned on the General Assembly of the United Nations website, tuberculosis is “the top infection killer in the world.” In 2017, TB killed some 1.6 million people, including 300,000 people living with HIV. Other organizations on the forefront of the fight against TB and HIV epidemics have added their voices to share the reality of the situation. The Gates Foundation, for example, reports that in 2016 there were almost half-a-million cases of multi-drug-resistant tuberculosis (MDR-TB). In the same year, 375,000 people died, worldwide, from TB and HIV co-infection.

Numbers tell their stories, but people involved in the fight to end these epidemics—patients and caregivers, advocates and researchers—are the ones who bring these stories to life. And people’s stories are oftentimes harrowing stories of loss, suffering, fear, isolation, as well as of hope and resilience.

While TB is still here, still touching and oftentimes taking the lives of too many people, regardless of their HIV status, the disease is often associated with bygone years. Tuberculosis, also known as “consumption,” was referred to as “the romantic disease” and associated with writers and poets such as John Keats, George Orwell, Katherine Mansfield, and many others.

The work of some of these consumptive writers became a source of inspiration for Paul Thorn’s new book, Diary of a Modern Consumptive, in which he documents his own experience of being diagnosed with and surviving multi-drug-resistant tuberculosis back in 1995, only a few years after being diagnosed HIV-positive. Diary of a Modern Consumptive is based on a diary Thorn kept while in the hospital, being treated A&U • DECEMBER 2018

for MDR-TB. The book documents how he “was infected, the diagnosis, the loneliness of isolation,” and also “the masked and faceless people” caring for him, “the hardships” of his treatment and, eventually, his cure, and everything in between. It tells a poignant and powerful story of isolation, pain, fear, and also of survival. As with all Paul Thorn’s books, what comes through in particular in Diary of a Modern Consumptive is the author’s honesty, the candor with which he writes about his experience.

Diary is an indelible read, powerful enough to possibly forever change our perspective on and about life and what we consider important in our life. And that’s why it’s surprising to

learn that the book almost didn’t happen.

“I’ve found writing very cathartic in the past, particularly my book, HIV Happy [A&U, October 2015],” Thorn comments. “The process forces me to consider things on a deeper level. In all honesty I have been frightened for years to write Diary of a Modern Consumptive.”

And yet, writing his latest book was far from being a cathartic process. In the book, commenting on his hesitation and why the book ultimately…won, Thorn writes, “I’ve wanted to write this book for some time, but the problem had been that I couldn’t face reading [the journals] again in any detail. I kept making excuses and stalling. I’d really tried to give up DECEMBER 2018 • A&U

on the idea of writing this book, but the idea had only gotten stronger over time. […] Being haunted by it indefinitely was not a chance I wanted to take.”

While reading Diary of a Modern Consumptive we can draw several parallels between TB and HIV/AIDS, in particular when considering the early years of the AIDS epidemic. The associated isolation, the drug tests and their effects on patients, the fear of dying come to mind, and the list goes on. “I guess the main similarity was being reduced to the sum total of an illness,” Thorn comments. Thus, the main parallel, the main driver, is fear, which “stems from ignorance. However, HIV for the most part is behaviorally transmitted. TB is environmentally transmitted; it’s an airborne disease and for this reason [TB] seems to elicit a different kind of fear.”

As humans, we tend to “recoil” from anything perceived as infectious, the author explains. “The newness of any perceived threat is at the core. But when we understand the risks, we adapt our behavior accordingly.”

When it comes to an epidemic, to any infectious disease for that matter, there are often two kinds of fears—people’s fear of the epidemic, of getting sick, and patients’ fear of dying.

In Diary, Thorn describes both kinds of fears. About the fear he noticed on the faces of his caregivers, he writes, “I can see the fear in their eyes as they try to breathe with waspish breaths inside the orange facemasks meant to protect them from me. Only in my dreams do I escape them, these people with faces I never see.” He describes his own fear of dying as “a surge of the fear of dying, the only punctuation in what essentially is the same moment in time over and over.”

And yet, looking back at his experience, it wasn’t the physical pain or even the fear of dying that Thorn considers the worst, but “by far the isolation” associated with the disease. In Diary of a Modern Consumptive, the author recalls that feeling of utter isolation. “My world has become very small,” he writes, “a room with a bed, a chair and a window with metal bars.

The stench of the dirty drain from the shower is filling my nostrils. There’s no solace from it and nowhere to escape to. I turn my mind outwards, trying to imagine the world beyond the anti-chamber’s two closed doors that separate me from a different, more pleasant reality. Lying back and looking at the ceiling, I wonder if it will be the last thing that I will

ever see.”

Today, he comments on that feeling of isolation. “Solitude is something one chooses,” he says, “isolation is often forced upon one.

Having TB is a truly isolating experience.”

He reminds that those living with HIV find support in the “you’re not alone” message.

(Thorn’s words bring to mind the song, “You’ll Never Walk Alone,” sung every year at AIDS Walk New York.) And yet, while in the hospital, diagnosed with MDR-TB, the author, who’s also living with HIV, was alone and completely isolated from everybody.

“This experience shaped a lot of my ideas about independence that I write about in HIV Happy,” he says. “I was forced to learn how to live and fend for myself outside of dependency culture. That is paying a dividend for me today, so no regrets.”

Today, still, both HIV and TB can happen to pretty much anybody. And yet, TB kills people regardless of their HIV status because, the author explains, “the one thing we have in common, whoever and wherever we are, is the air that we breathe.” The biggest threat is the microbial resistance to the available TB treatments. If we don’t take action now, things could get more difficult to resolve. He believes that “we need a new approach [to TB], a human-rights based approach, not [solely] one of public health.” And in Diary of a Modern Consumptive he conveys to readers “just one personal story that provides some humanity to incomprehensible TB statistics.”

TB and MDR-TB are treatable and curable. The problem is that many of the older drugs used to treat TB have severe side effects.

In his book, Thorn writes, “All people, wherever they are from in the world, should have access to the most sensitive diagnostic testing, the most effective medicines, and every effort should be made to maintain [patients’] dignity and freedom. No one [should have to] die of TB in 2018, and yet [TB] remains the biggest killer due to bacterial infection in the world.”

The author points out that health has only been the topic of a High-Level Meeting at the UN General Assembly five times in history, and yet this is the first time that TB has been the subject of such a meeting. “I think it is finally sinking [in] for the leaders of the world that we face a growing problem with tuberculosis and [multi-drug-resistant tuberculosis].

Better late than never, I suppose.”

Diary of a Modern Consumptive was released to mark the 2018 UN High-Meeting on Ending TB. An audio version of the book is also available. Find out more about Paul Thorn’s books on Amazon. Follow the author on Twitter @Paul_Thorn. Learn more about the author by visiting online at www.thornconsulting.co.uk.

Alina Oswald interviewed Bill Bytsura for this month’s Gallery.

23

Harold Matzner

Helene Galen & Jamie Kabler Donna MacMillan

Positive & Penalized when your medical condition is illegal

illustration by Timothy J. Haines

H

IV criminalization is a complex issue that plagues our community. It seems to be a crime for which the claims of another person can be enough for a conviction that destroys the life of an alleged perpetrator who hardly bore sole responsibility for the events that transpired. As defined by The Elizabeth Taylor AIDS Foundation, HIV criminalization refers to the use of criminal law to penalize alleged, perceived, or potential HIV exposure. And, it’s simply exposure, not definitive transmission, that is criminalized.

To make matters worse, these laws vary greatly from state to state with a mere six states having repealed or reformed their laws to reflect current realities in treatment and transmission, according to The Center for HIV Law and Policy. It is perfectly sound science that a person under successful treatment who is undetectable cannot transmit HIV, and, besides, with prophylactic medication (PrEP) now available, transmission can be avoided with or without a condom. But of course the law hasn’t caught up; in many cases, it never even took the realities of traditional methods of safe sex into account.

Also not taken into account is the fact that, while no one wants or should acquire HIV needlessly, it’s been decades since it was considered an automatic death sentence.

To put it in numbers, HIV criminalization fails to take into account that about fifty percent of people with HIV are on effective treatment, with numbers always increasing.

That means that fifty percent of HIV-positive individuals can’t transmit the virus in the first place. Those are real numbers backed up by organizations as trusted as the CDC. Other organizations, such as the American Psychological Association and most of our major HIV/ AIDS organizations have come out opposing these laws.

The Center for HIV law and policy further breaks these laws down state by state on their website. Thirty-four states have HIV-specific criminal laws; eight of those having sentencing enhancements in place. Twenty-three states have prosecuted persons living with HIV under nonspecific general criminalization laws. Six states require the registration as a sex offender for persons convicted. The laws are being interpreted and applied with a

DECEMBER 2018 • A&U

variety of consequences that too often punish a person for simply being HIV-positive.

I came of age in the late eighties in New York City, which was a ground zero at the height of the crisis. The LGBT community at the time had it practically drilled into us by various agencies and organizations fighting the plague that we were responsible for our own health. The choice to have safe sex was entirely in our own hands and we needed to assume that

every sexual encounter put us at risk. I still feel that there is no excuse in this modern age where HIV has long been a reality, that we are not responsible for our own health.

In most cases other than rape or perhaps an unfaithful spouse, that is the standard that should be applied. Regardless, by 2016 there were 279 cases prosecuted under current laws in which actual transmission, most often, never occurred. No other transmittable disease is subject to such law.

I recently spoke to HIV advocate and activist Ken Pinkela [A&U, October 2016], who said to me, “People living with HIV are already under attack by the very existence of these laws…declaring all as ‘predators’ or ‘viral vectors’ just for the very fact that we are living and loving with HIV. The fact that these laws remain at all does nothing but fuel stigma. Sadly I know that we can all agree that HIV stigma is more deadly than the virus itself.” Ken himself was criminalized and dishonor-

ably discharged and detained by the U.S. military, where he honorably served for twenty-nine years and has only recently had his medical benefits reinstated after a prolonged legal battle.

In another recent conversation I asked television producer and writer Our Lady J [A&U, November 2018] what we can do to address the problem of HIV in the trans community. She answered, without hesitation, “I think the one thing we can do is decriminalize HIV. When HIV is criminalized, it’s not the HIV itself that is criminalized, it’s the diagnosis. It keeps people from being tested and when people can’t be tested, they can’t take meds. They can’t stay healthy and undetectable and the virus spreads.”

I myself try to always disclose my status and in my smaller community that has meant a lot of rejection based on fear and lack of knowledge. I have to admit, however, that there have been several times in the past where I did not hold true to that ideal. Now, it was after the first PARTNER study, and I was confident that I could not transmit or the sex itself was safe by definition (i.e., the use of condoms). But neither fact might protect me under current law if one of my partners were to retaliate. That has haunted me and I have not failed to disclose after those three times.

In one of the three cases I ended up staying in touch with the man and did disclose, my heart in my throat as I did so. Nonetheless, after further years of study, we now know for a fact that undetectable means untransmittable but still, rather than someday finding myself in court and having my life destroyed, I always disclose well before any sexual encounter occurs. I’d rather live with the possibility of rejection than face a jail sentence.

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

25

YOU MATTER AND SO DOES YOUR HEALTH

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

WHAT IS DESCOVY®?

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

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

IMPORTANT SAFETY INFORMATION

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

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

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

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

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

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

The most common side effect of DESCOVY is nausea.

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

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

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

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

• If you are pregnant or plan to become pregnant.

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

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

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

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

IMPORTANT FACTS

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

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

POSSIBLE SIDE EFFECTS OF DESCOVY

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

DESCOVY can cause serious side effects, including: • Those in the “Most Important Information About DESCOVY” section.

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

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

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

The most common side effect of DESCOVY is nausea.

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

ABOUT DESCOVY • DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection.

• DESCOVY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.

BEFORE TAKING DESCOVY Tell your healthcare provider if you: • Have or had any kidney or liver problems, including hepatitis infection.

• Have any other medical condition.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed.

Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

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

• Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.

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

• Go to DESCOVY.com or call 1-800-GILEAD-5 • If you need help paying for your medicine, visit DESCOVY.com for program information.

HOW TO TAKE DESCOVY • DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines.

• Take DESCOVY with or without food.

DESCOVY, the DESCOVY Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: September 2017 © 2017 Gilead Sciences, Inc. All rights reserved. DVYC0085 11/17

The New HIV

healthcare shouldn’t be this hard to access

illustration by Timothy J. Haines

I

don’t think I ever could imagine a day where HIV in America would be viewed as something that isn’t a priority.

Although the signs have been there for some time, it seemed that people would for the most part at least attempt to keep some kind of morality and ethics around a virus that has killed so many and continues to take lives today. But following the election of the Trump and the installation of his administration, the constant attacks against the HIV community lets us know that nothing is off table and every marginalized community is now at risk.

When I say, “The New HIV”, I am referring to the post-eighties and nineties decimation of various communities, primarily that of LGBTQ people. HIV during that time was referred to as “a death sentence.” There was no cure, and for many years there was no treatment option available. We have all seen the images of what the epidemic did to our country and to people globally. We have heard the stories of funerals of friends and family seemingly week after week for years. The stigma, the criminalizing, the shaming that was all built from that time—a trauma we still deal with but for many in power minus of the fear of mass death. An interesting twist in the fight to stop HIV. The New HIV is often viewed through the lens of people seeing those who publicly live with HIV as people who are thriving and excelling in community. The fear that someone like Magic Johnson could have succumbed to the virus was all but removed as people watched him on television week after week, seemingly healthy, with his HIV diagnosis that shook the world, now just an afterthought for many. He faces the shaming and still gets his fair share of stigma but that fear of his death being “imminent” has dissipated, and along with it the fear that DECEMBER 2018 • A&U

many of us who are positive still deal with “death” as something that can be a result of HIV in 2018.

It is because of this, people in power have been able to dismantle nearly thirty years of work in less than two full years in office. If the fear of the eighties and nineties were still here with HIV, there would be no way that HIV could be a party issue.

But the fact that HIV is more prevalent in Black and brown communities, intersected with an administration that bolsters the

white supremacist principles this country was built on, created the perfect storm to allow dismantling and defunding to even be an “acceptable” option.

The New HIV has doctors proclaiming that HIV is a chronic issue similar to diabetes. A statement that on one hand works to ease the consciences of those newly diagnosed and give them some mindset around how treatment of the virus will go on after diagnosis. However, there is a downside. Shifting HIV’s narrative into one that discusses people’s ability to live with the virus without addressing the barriers that still prevent tens of thousands from gaining access has been detrimental to continued need for federal funding and programs around HIV care.

Look no further than the removal of nearly $560 million from Ryan White—a fund to provide treatment and medication

to people who are unable to attain insurance for HIV care—in order to fund the immigrant children separated from their parents at the border. This was not the first attempt to defund HIV, as the initial budget request for nearly $1.2 billion ($400 million domestically and 800 million in PEPFAR). While this defunding attempt is happening, there has been another epidemic—0pioid—that has become priority number one. Primarily because this epidemic has a white face.

The New HIV is a scary place, especially for those who rely on these systems and institutions to get treatment as well as continue prevention efforts like PrEP, free condom services, and needle exchanges. These constant attempts at defunding will in fact affect Black and brown communities and potentially lead to death, as it must be restated that people can still die from HIV. People still are dying from HIV. This community of millions is still one of the most vulnerable and marginalized groups in this country and needs funding to continue the work that has been done in the last thirty years.

Our community is in a new fight, one that we must win. Much like the ancestors who stormed the White House gates with the ashes of loved ones, we are going to have to be vigilant, persistent, and willing to use every tactic to ensure our community is provided for and taken care of. HIV of the past is not what it currently is today, but that doesn’t mean it is still not as important an issue for our country.

Millions have died from this virus and we can’t let hate and bigotry win. It may be time for us to ACT UP again, and remind this country that we are strong, despite our marginalization.

George M. Johnson is a journalist and activist.

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

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by

Seeking Connections

Raymond Luczak or, why bother with short stories

about aids?

30

and yet honored. Ever since I came fully out as a gay man in 1984, the fear and paranoia surrounding AIDS had a lasting impact on me.

In those dark days, I knew I couldn’t afford to indulge in risky sex, and more than that, I was stunned to watch and hear about one Deaf friend after another die from AIDS-related causes. That I was never infected felt like a miracle, and then came the release of protease inhibitors in 1995.

Gradually my remaining friends who’d been infected stopped dying, and in time, being HIV-positive became no longer the death sentence it once was.

For a story to work, one needs conflict.

In the AIDS-related stories I’d read prior to 1995, death—impending or not—was the conflict. Then came the stigma and fear of “getting it” once people infected with HIV stopped dying. We are now at the point when “undetectable” means an extremely low chance of HIV transmission. How can we find conflict then in new stories to be published in a national AIDS magazine?

I knew of this challenge, and that is why I took this job.

As a fiction writer myself, I can’t claim to have all the answers nor do I want to have them (because if I did, I’d probably give up on writing altogether as writing is my favorite means of discovery about myself and others), but I do know that I don’t want to see stories about a drag queen who’s just died. I read too many of them during the 1990s. I don’t want stories that sensationalize the physical effects of being HIV-positive. I also don’t want stories that focus only on a character’s disability as the result of having AIDS. Each of us, regardless of our serostatus, remains foremost a human being. We are much more than the sum of our illnesses and disabilities. We

are not clichés, nor do any of us readers deserve to meet stereotyped characters.

When I read fiction, particularly when it’s submitted for my consideration, I want to meet characters as they are. I want a well-rendered glimpse into their lives.

What drives them to make the choices they make? What societal (or familial) forces must they wrestle with? If I were to meet them in person, would I want to make dinner for them?

That is the crux of what I’m looking for: to connect with others in an age of great social disconnections when we need to hang on to our own humanity. I look forward to reading your submissions and working with you to make your work shine in the pages of A&U. Raymond Luczak is the author and editor of over twenty books. His latest titles are The Kinda Fella I Am (Reclamation Press), A Babble of Objects (Fomite Press), and The Last Deaf Club in America (Handtype Press). Books forthcoming in 2019 include Flannelwood (Red Hen Press) and Lovejets: Queer Male Poets on 200 Years of Walt Whitman (Squares & Rebels). He was previously the editor of the queer fiction journals Jonathan and Callisto. A ten-time Pushcart Prize nominee, he lives in Minneapolis, Minnesota. Visit his website at: raymondluczak.com.

A&U • DECEMBER 2018

photo courtesy R. Luczak

P

oetry, due to its power wielded by concision, may be the heart of all literary arts but stories are the veins that emanate everywhere we look.

When I read a story, I want to feel its pulse and feel that much more alive.

I want to forget my own life and discover a different reality than mine in order to discover a new truth, a reminder of what it means to be human, to know again that I am never alone.

In what I hope to be the only Golden Age of Social Media, I have noticed that my sense of community has eroded in the flicker of tiny screens glowing in our hands. I want to connect with others in a meaningful way, but the possibilities once wild in the faces of others glancing back and forth on the subway, sidewalk, and social gatherings seem to have shrunk. It is much harder to get people to show up for bookstore readings and book talks. It’s so much easier to stay home, a warm cocoon zone full of comfort. No one has to see our hurt expressions when a friend, or someone whom we’d thought to be “friends,” say they’re too busy to meet up with us.

We learn not to take things personally, and yet the more we do this, the more we disconnect from others. We do not realize we have been doing this, but there is an accrual of enormous debt that will demand payment when our children, watching us becoming more self-absorbed with our electronic devices, imitate us. They will grow up and wonder how to articulate those rage-filled sparks of loneliness. How will they connect with others without the aid of these immersive screens?

Sometimes there is more truth in fiction than in facts. Truth, as in emotions, clarified in a startling way that makes me feel good in knowing that I hadn’t been alone in feeling that way. Truth, as in because I’m Deaf, I cannot always easily lipread others so meeting characters on the page is my way of catching up on the so-called social niceties so that when I do meet people similar to the characters I’ve met, I have a better appreciation of who they are.

When I was offered the opportunity to edit fiction for A&U, I felt most surprised

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A&U Gallery

someoft he

Bravest In his new photography book, The AIDS Activist Project, ACT UP activist and photographer Bill Bytsura pays tribute to the spirit of protest while reminding us that AIDS is not over

by Alina Oswald

T

hroughout the years, many photographers have embraced black-and-white to tell some of the most intense, intriguing, powerful and memorable stories for various reasons. Award-winning photographer and AIDS activist Kurt Weston [A&U, November, 2005] says black-and-white offers his art “a concentration of expression” and likes that intensity, in particular in his portraits. Ted Grant, the father of Canadian photojournalism, believes that “when you photograph people in black-and-white, you photograph their souls,” while Swiss-American photographer and filmmaker Robert Frank calls black and white “the alternatives of hope and despair to which mankind is forever subjected.”

ACT UP activist and veteran photographer Bill Bytsura, whom I interviewed for A&U in January 2015, also chose black-and-white photography to capture the souls, despair, as well as the hope of his subjects, AIDS activists during the eighties and a good part of the nineties, in a remarkable body of work, The AIDS Activist Project. Influenced by the likes of Diane Arbus, Dorothea Lange, Roman Vishniac and Richard Avedon, Bytsura often uses black-and-white in his own work. To him, black-and-white photography is “more truthful, and much more powerful” and is meant to capture powerful images. And The “Silence = Death AIDS Activism Project is just that, a collection of intense and Action = Life We have to protest intriguing portraits, a unique body of work that captures Protest to survive a less known, more candid, intimate side of the AIDS and Silence = Death ACT UP activists.

Action = Life A Plattsburgh, New York, We have to protest native, Bill Bytsura moved to Side by side….”

Pennsylvania in 1974, where -Oscar Bodelier he became interested in photography. A few years later, in 1984, in New York, he started photographing professionally for clients like American Express, Newsweek Magazine,

32

A&U • DECEMBER 2018

Oscar Bodelier–ACT UP Amsterdam, Amsterdam, 1992, black and white, selenium-toned silver gelatin print, 16 by 20 inches (exhibit dimensions) NOVEMBER 2018 • A&U

33

A&U Gallery resolve in their faces. But he has also found fear, and the mountains of unprocessed grief.

These beautiful photographs…

quite equate to getting out in the streets and demonstrating for your life, taking the risk of possibly getting arrested.

Bytsura shared his personal experience losing Randy, his partner of seven years, to AIDS, and the depression and sadness that followed.

He reiterated his gratitude towards his friends who, while trying to “Free condoms, dental help, had guided him dams + gloves all over the to ACT UP. To this day, the (spelled “de”) world!! The photographer still multi nationals have the recalls the intensity money and the power, let of those meetings. “I them pay for it. Free excess was inching for the to all medical help every- door,” he said, with where. Silence = death, Ac- a shy smile, while at the Housing Works tion is (with = over it) live bookstore, inching (that’s why I’m an activist)” along the wall, as if -Lizet Vlasveld to demonstrate the movement. And yet, bring us as close as intimidated as he felt while at ACT UP as we may ever get meetings, he was too afraid of everything to knowing what that was going on around him at the time, of the plague years the idea, back in the eighties, that authorities wrought. Just look would tattoo individuals living with HIV, and into the eyes of the so, he went back to ACT UP. frontline warriors.”

At the Housing Works bookstore, during This Novemthe Q&A session that followed, the audience Lizet Vlasveld–ACT UP Amsterdam, 1992, black and white, seleniber 5, I had the wanted to know more about the making of The um-toned silver gelatin print, 16 by 20 inches (exhibit dimensions) chance to look into AIDS Activist Project body of work, the people the eyes of these and Jazz Times Magazine, and also docuBytsura photographed, and about his feelings, activists when attending The AIDS Activist menting a number of AIDS organizations. as a photographer, while revisiting his work, Project book opening event, at the His photography work has appeared in naHousing Works bookstore in New York tional and international galleries, from New City. Despite the rain, the bookstore York and Pennsylvania to “Don’t Leave Me filled with people, all eager to meet This Way: Art in the Age of AIDS” exhibition Bytsura and learn more about the story at the National Gallery of Australia. behind the book. A slideshow displayBytsura started to work on The AIDS ing images from the book was running Activist Project about thirty years ago, on a big screen, on a wall. Bytsura, photographing AIDS activists, in particular himself, made a point to welcome ACT UP activists from across the country everybody, shake hands and pose for and around the world. This impressive body pictures. Among those attending the of work includes some 225 photographs, as event, including someone who had well as personal notes written by the activists come from Atlanta, Georgia, there themselves. In 2011, The AIDS Activist were some familiar faces, familiar Project was included in the Fales Library and because I had seen them in Bytsura’s Special Collections, at New York University. book. Ann Northrop was there, and The AIDS Activist Project book includes so was Robert Vazquez-Pacheco, a only portraits of ACT UP activists. The book member of Gran Fury collective. He is “a memorial tribute to the departed” to soon joined the photographer on those activists who’ve lost their battle with stage, in a conversation about The the virus, as well as a “reminder that the AIDS Activism Project book, and a epidemic is not over.” In the foreword, passionate dialogue about a thenDavid France (How to Survive a Plague) and-now of AIDS, and ACT UP, writes, “Photographer Bill Bytsura set out to activism. After all, there’s much to memorialize those individuals, along with be said about activism, in general, the movement’s rank and file, mid-battle.… and AIDS—ACT UP—activism in What he produced is a study in defiance. But particular, when looking at it through the photos betray a deeper insight. Yes, you the lens of time. Liking or Sharing see the power and the strength, the awful something online, today, doesn’t

34

A&U • DECEMBR 2018

making the final selection for his book.

“I was honored to be able to photograph people who were in ACT UP,” Bytsura said, his voice humbled by the memory of that experience. He wanted to make sure that the names and faces of those individuals—in particular of those who ultimately lost their battle with AIDS—would never be forgotten.

Never forgotten will be activists like Robert Farber, who was an artist and actor, and who noted, “I have AIDS. I take a lot of medicine to buy time. But there is really nothing anyone can do to change my situation. I know how this story will end.”

Never forgotten will be activists like Oscar Bodelier, whose note reminds that: “Silence = Death Action = Life We have to protest Protest to survive.”

One of my personal favorites is the portrait of Robert Garcia, now also gracing the cover of The AIDS Activist Project book. The attached note remarks: “So I would whisper to myself as I was marching shouting demonstrating, fighting back. Robert, every step is a tear you don’t want to cry, every arrest is an act of hope. I don’t know what ACT UP represents, a little order in this chaos we know as the AIDS crisis.” Signed “Robert Garcia, as a thought not a complete statement.”

There are also portraits of ACT UP activists who’re still with us, still leading the fight. Among them, Larry Kramer, Charles King, and Ann-christine d’Adesky [A&U, August 2017].

Also included is a portrait of Peter Staley [A&U, June 2015]. His note states, “[Activism has] gotten my T-4s going. It’s given me a social life. It’s like night and day compared to where I was before I began, before I joined ACT UP.” The last portrait included in

the book is that of Robert Vazquez-Pacheco.

His is a hopeful message: “I work in AIDS because …I believe in social change. I believe that a real cure for AIDS involves addressing the problems exacerbated by the pandemic: homophobia, racism, sexism, classism, etc.

The cure I want is more than just a vaccine.

The cure I want is human liberation.”

Some thirty years later, at the Housing Works event, he called Bytsura’s book “an Top: Robert Vazquez-Pacheco–ACT UP inspiration” and “a record to show that New York, NYC, 1989, selenium-toned we were there, we were fighting.” silver gelatin print, 16 by 20 inches When I got to talk to Bill Bytsura, before (exhibit dimensions) having my own copy of The AIDS Activist Project signed by the author, he explained Left: Joy Episalla–ACT UP NY, NYC, the reasons behind putting the book to1991, black and white, selenium-toned gether, and offered a message to its readers. silver gelatin print, 16 by 20 inches “When I was going to ACT UP meetings I (exhibit dimensions) would look around the room and think that

DECEMBER 2018 • A&U

these are some of the bravest and [most] courageous people I have ever met. My goal was to present them as such, and record the faces and words of people who stood up in the middle of one of the most tragic epidemics and fought for change, acceptance, and treatments. I’d like people to look at the faces and remember this movement and these people, and maybe be inspired that they, too, could help make change.”

Learn more about Bill Bytsura’s work and The AIDS Activist Project photography book by visiting; www. theaidsactivistproject.org.

To find out more about Housing Works and Housing Works Bookstore, please visit: www.housingworks.org.

Alina Oswald reviewed Bohemian Rhapsody in the issue’s The Culture of AIDS.

35

VIBRANT GRAY A Courageous Champion of the Fight Against AIDS Early On, Researcher Glenda Gray, MD, Intensely Pursues An HIV Vaccine

D

on’t let me die!” pleaded a twenty-four year old patient who was living with AIDS as he clutched Dr. Glenda Gray’s arm. It was the mid-eighties in the ICU unit of Soweto’s Chris Hani Baragwanath Hospital in South Africa.

The patient had pneumocystis pneumonia (PCP) and Gray, a young doctor, was intubating him (placing a tube in his trachea) when she confronted the horror in her patient’s eyes. She promised that by ventilating him he would have the best chance of survival, assuring him that she’d take care of him. But his condition worsened…and he died.

This was the doctor’s first patient to die of AIDS-related causes and the fateful memory is deeply embedded.

Dr. Gray learned about the epidemic in medical school. After receiving her license in pediatrics, she soon was treating young women with HIV, their babies, and children in the wards. She joined South African Health Workers Congress (SAHWCO), an organiza-

36

tion for progressive health workers, and led the AIDS desk. They organized communities around the issue of HIV and AIDS, using this as a tool working toward a non-racial South Africa and a desegregated health care system.

Dr. Gray, fifty-six, is President of the South African Medical Research Council and has received the “Hero of Medicine” award by the International Association of Physicians in AIDS Care (IAPAC) for her work in the field of HIV treatment in children and adults. In 2013, Glenda was awarded the Order of Mapungubwe, South Africa’s highest honor, for her life-saving research in mother-tochild transmission of HIV and AIDS that has changed the lives of people in South Africa—and abroad.

In 2017 she was listed among Time magazine’s 100 most influential people in the world.

Glenda has three children, a daughter, twenty-four, another daughter, twenty, and a fourteenA&U • DECEMBER 2018

photos by JP Crouch

by Dann Dulin

year-old son. In 2002, she received the Nelson Mandela Health and Human Rights Award. Her kids were so proud that they took the award to school and subsequently the school asked her to head the AIDS committee. Along with a fellow doctor (Lerato Mohapi), who was also working in HIV treatment, they held a meeting in the school’s science lab, with five parents attending.

As the meeting began, a Mercedes-Benz unexpectedly pulled up. A young driver hopped out, opened the back door, and out stepped an elegant Nelson Mandela. The meeting was hushed as Mandela talked about the epidemic. There was an air of disbelief.

After Mandela left, Glenda and Lerato screamed and soared with excitement, realizing that he cared!

Dr. Gray was impacted by multi-level encounters of the epidemic. She witnessed many patient deaths, watched as her staff and friends succumbed to AIDS, and when the drugs finally arrived, Dr. Gray observed friends struggle with the new meds. The whole time was shrouded in stigma—the societal shame that led people to keep their positive status a secret. Glenda was outraged and angry.

Certainly, one cannot glance at Dr. Gray without noticing her eerie resemblance to another humanitarian—Hillary Clinton [A&U, April 2005]. The comparison pleases Glenda. She has not met Mrs. Clinton, but she did meet up with Bill Clinton one time when he was in Soweto, visiting the PMTCT (prevention of mother to child transmission) program.

Though this physician has a busy schedule, she manages to take time to celebrate life—spending time with her children, lazing on a sun-drenched porch on weekends, cultivating her garden while smelling the fragrant roses, taking quiet strolls, and doing laps in the pool.

The dynamic doctor and professor also enjoys dancing, sipping wine, and listening to loud music.

Dann Dulin: I heard you speak once, stating, “HIV is the epidemic of our time.”

Can you elaborate?

Glenda Gray, MD: HIV has consumed the energy of the world in both the twentieth and twenty-first century. It exposed both our medical deficiencies and global social inequalities. It formulated careers and institutions. The weapons created to fight HIV have been novel: Global Fund, UNAIDS, TAC, NACOSA and SANAC. This epidemic has affected me personally, as has been the case for almost all of DECEMBER 2018 • A&U

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my colleagues. HIV pulled me into medical research from a clinician/pediatrician, revolving around young women and their children. It has in some ways enriched me and in some ways embattled my life.

How so, Glenda?

My patients who were children, who died, are imprinted in my memory. There are the babies, an eight-year-old boy, and then his mom; a two-year-old daughter of a fellow activist, and patient of mine; an infant girl, of a young eighteen-year-old; a teenager and treatment activists.

What was going through your mind?

I kept thinking that this should not be happening. All the memorial services and funerals I attended. [She pauses.] Sheer horror.

Tell me one of your personal experiences with HIV. My housekeeper was diagnosed HIV-positive. We started her on treatment.

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We then had to test her young son, who fortunately was negative. I watched as she went into acute renal failure due to tenofovir, as the doctors were telling me to call a priest and prepare for her death.

I brought her home from the hospital and I was convinced that I was not going to let this [death] happen. I sent my family away, while her son and I constructed a mini ICU at home, and with proper fluid management and care, brought her back to life.

Thank heaven! Share one of your professional losses.

The head of the ICU was a brilliant man, who was a talented thoracic surgeon.

I could not understand why he was not operating. One night on call, he disclosed he was HIV-positive. He got TB a year later and died of HIV. This was in 1988, long before ARVs were available as treatment.

More and more patients came into our hospital who were HIV-infected. The wards were gruesome, filled with sick and dying people, and they were all young.

In layperson’s lingo, what are you currently working on scientifically?

My research is focusing on HIV vaccines. We are testing two HIV vaccine approaches. We are trying to find an HIV vaccine that can protect against HIV. This has been the focus of my research since mid-2000s. HIV vaccine research is a team science. Clinicians have to work with laboratory scientists, with social scientists, and with community members. It truly is team science, as all components are necessary to forge ahead.

In December 2017, you launched an HIV vaccine trial. What are the particulars of the study?

We enrolled over 2,000 participants—young men and women in South Africa in thirteen sites, rural and urban, across the country.

What is the study called?

The HVTN 702 study or Uhambo, A&U • DECEMBER 2018

Mandela photo courtesy Dr. Gray

meaning “journey.” It is evaluating a vaccine strategy that primes the immune system with a viral vector containing HIV synthetic antigens and boosts the immune system with this viral vector and a 2 component synthetic HIV protein compound, genetically engineered from the envelope of HIV. This regimen hopefully will cause the human immune system to develop antibodies that will protect against HIV acquisition, when exposed to HIV during sex.

How long before the world receives an HIV vaccine?

We hope to have answered substantial questions from our trials that will either show that our vaccine approach has worked, or [she takes a beat] shows us the way. We will be able to answer this by 2020/21.

What happens if the vaccine shows promise?

Then the real hard work starts! How DECEMBER 2018 • A&U

do you scale up manuDr. Glenda Gray with Nelson Mandela facturing? What is the engineering process to fought alongside TAC [Treatment Action take our approach to scale, so we can Campaign] for PMTCT, the nurses, the deliver this? How do we roll this out? doctors, the families, those who fought What are the regulatory and licensing AIDS denialism. The true heroes are the issues that require answering before the people who faced this adversity, stood up vaccine can be licensed. Who pays? Who and were prepared to be counted. And scales it up? mostly they were just citizens….

There are Global Access Committees that work on answering these issues, so What do you believe is your greatest that we have our ducks in a row, should accomplishment, Dr. Gray? we be successful. Team science!

I think I am a work in progress.

Being part of a team that finds an HIV Whom do you consider a hero in the vaccine will be my greatest scientific AIDS pandemic? accomplishment.

There are many heroes. There are the children who struggled with their illness, What drives you? What makes you conwho went to school with a secret, less tinue in the storm of adversity? they get thrown out. There are those who I am a doctor. It’s my job. It’s my got thrown out of their homes, beaten to duty. This is the epidemic I was born death like Gugu Dlamini (1962–1998) into as a young doctor and I have a duty for being open about their status. There to help end it. are treatment advocates who helped drive the price down, the mothers who Dann Dulin is a Senior Editor of A&U.

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House of Hope Providing Optimism, Congresswoman Maxine Waters & Her Peers Forge Ahead for Housing & Healthcare as Democrats Take Back the House Text and Photos by Sean Black

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f your inbox was anything like mine on and around November 6, then you are probably feeling a similar modicum of hope as we now move into what we pray is the last half of our Trump-era reign following the 2018 midterm elections.

For those of us living with HIV, grateful albeit dependent on costly daily medications, we’ve been witnessing a challenge to our country’s founding promises and an erosion of human rights at federal and statewide levels that cuts right into our own homes and neighborhoods. There is an identifiable bigotry that seems to be settling in with a belligerent smugness.

A few months back, I was visiting my family in Central Florida, a Bible-belt-adjacent and very conservative part of the country and was asked about my “life.” I mentioned the opportunity of spending time this past summer at L.A. Pride with Rep. Maxine Waters (D-Calif.). One of my brother’s in-laws immediately brought up the Congresswoman’s provocation (to some) to rally people to publicly confront Trump Cabinet members over the separation of immigrant parents from their children. Tension and a brief argument ensued. Defending her call to action, I was quickly reminded, in an elevated tone, that the home I was visiting was “A Republican Household.” As I got up to leave, I was asked to stay to talk it through, which I did. My relatives aren’t cold-hearted people but rather generous, hardworking pillars of their community. They have stood beside me through the loss of friends to AIDS, my own struggles with addictions.

They have many times welcomed my trans friends into their homes, well before

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the current trans movement was where it is today.

When it comes to political ideology, however, we differ greatly. Mine are like many of our relatives and loved ones who lack the understanding of how hard it actually is to exist when you are marginalized, and void of agency granted by a privileged birthright. The rest of the evening was uncomfortable, to say the least. As citizens and non-citizens, or better yet, simply people living in the United States, we all make different judgments based on our own lived experiences, self-interests and prejudices. However, the threat that my medications may one day become withheld or no longer available to me because I don’t look, dress or love accordingly terrifies and angers me. So, as far as I am concerned, I am part of the black, LatinX, and trans communities, as well as being HIV-positive and gay. In jobs I have held previously I have confronted members of the opposite political party and addressed them with kindness and respect, hoping they would see our broader humanity by example. I have had to restrain myself many times when I have wanted to take more aggressive vocal or assertive action.

With Representatives like Maxine Waters in Congress, I feel I have a voice and that there is hope. She is a brave catalyst in waking us up. After Trump’s 2016 inauguration, she was one of the first politicians to call for his impeachment and she has been rallying her constituents to “push back” ever since. Many, like myself, commend her for the bravery and resiliency which she instills in others.

A letter in support of the Congress-

woman over the urging of people to protest the President’s staff in public spaces was signed over the summer by nearly 200 black female leaders and allies outside of Congress calling on top congressional Democrats to defend the Congresswoman.

“As one of the signers of the letter in support of Congresswoman Waters, shares Sheryl Lee Ralph [A&U, August 2015], longtime friend of Rep. Waters. Ralph, an Original Dreamgirl, is the founder of The DIVA Foundation, a national not-for-profit organization launched in 1990 to memorialize and pay tribute to her many theater friends lost to AIDS. “I feel that any attempt to muzzle her voice is an attempt to muzzle ALL of our voices. In this critical moment in the history of this nation, where financial greed is the dominating force, Congresswoman Waters has been the clear, focused and unwavering voice fighting for those most in need. Our democracy is under attack.

Thank God that our fearless Maxine is there to speak up and stand up for us all.

It is our duty to support her. When we support her, we support ourselves. The Congresswoman was a big supporter of mine when I started as a young HIV/AIDS activist and it wasn’t popular to speak about the disease. I will never forget her commitment,” solemnly states Ralph.

Thankfully now elected back into public office into her fifthteenth term in the 43rd Congressional District of California, Congresswoman Waters represents a large part of South-Central Los Angeles including diverse cities Gardena, Hawthorne, Inglewood, and Torrance.

Due largely to a surge of voters, many A&U • DECEMBER 2018

first-time and younger Americans, Democrats regained the House majority after an eight-year loss. Invigorated or simply fed-up voters ushered in new policy-makers as well, like Democrat Mike Levin in California’s 49th District replacing retiring DECEMBER 2018 • A&U

Republican Rep. Darrell Issa as well as Jahana Hayes, 2016 Teacher of the Year, the first black woman elected to represent Connecticut in the House of Representatives, maintaining the State’s Democratic hold. Hayes’ personal history of triumph-

Phill Wilson and Rep. Maxine Waters ing over socio-economic barriers through her commitment to education then maximizing her impact to others through her

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“Being an American for me means that I have the right to be who I want to be, I have the right to express myself how I want to express myself, and most of all it means that I am free,” stated DeAndre Ford at night before the polls closed on Election Day. Senior Office Manager for APLA Health & Wellness Gleicher Chen Health Center located in Baldwin Hills, California, DeAndre is an HIV-negative ally serving the HIV community and has been with the organization almost fourteen years. “Voting is as important as your health—you have to take an active part in it to get the best possible outcome.” lauded vocation reassures progressives that all is not yet lost.

With the House majority victory, ranking member Congresswoman Maxine Waters will ascend to the role of Chair of the House Committee on Financial Services, where she has vowed to continue to address critical reform in the housing and home loan practices to circumvent a recurrence of the 2008

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housing crisis as we still recoup from its disastrous economic consequences.

When I interviewed Congresswoman Waters at L.A. Pride this past summer, she was joined by longtime friend Phill Wilson [A&U, February 2014], founder and CEO of The Black AIDS Institute. Flanked by his staff and supporters, Rep. Waters was immediately recognized by young

Pride-goers, who gathered near the iconic politician known for her resilience and 2017 “reclaim my time” fame.

“I am excited over the voices of the Millenials who have decided that they have a say and a stake in this great democracy,” shared Waters when speaking with A&U. “And I am especially excited to see that they are going to fight for their place at the table. I am going to do everything I can to give support to them.”

Turning eighty this past August, Waters commenced her career in politics in 1977. Her longevity has resulted in some of the boldest legislation that California has ever seen. She has stood beside those without voice or silenced and has been advocating for international peace, justice, and human rights for almost forty-two years—for more than half of her lifetime.

Preceding Election Day, Waters appeared on MSNBC to discuss the backlash in Trump support presumably resulting in the Dem win of the House.

“We have been very successful talking about our issues; talking about healthcare, which is a very important issue in this country.” Waters continued, surmising that the people’s concerns over housing, Medicare, Social Security and the infrastructure all are contributing factors to the House majority win for Democrats.

She has been a staunch supporter for mobilizing youth, particularly with The Institute, with a track record dating back to the mid-eighties, when she founded Project Build, an organization empowering L.A. youth living in housing developments on job training and placement. “I believe in them [youth] and I think that they are truly key in our future,” continued Waters, now beefing up security over death threats fueled by demeaning attacks by our Bully-in-Chief and his right-wing Administration.

Phill Wilson says, “Maxine Waters (Auntie Maxine) has been an advocate and champion for marginalized and disenfranchised people her entire life.

She was the first Black elected official I know to fight for people living with HIV/AIDS, people at risk for HIV, LGBTQ people. Maxine doesn’t just talk the talk. She has been walking the walk and fighting to end AIDS in Black communities since since 1986. As chair of the Congressional Black Caucus, she literally made the Minority AIDS Initiative happen. She has been a personal mentor to me and many other AIDS A&U • DECEMBER 2018

activists. Without Auntie Maxine, there would be no Black AIDS Institute.

She has marched with us, traveled the world with and for us, fought for us, visited us when we were in the hospital, and attended our funerals. She is truly a hero in the struggle.”

Backing Black AIDS Institute’s focus on expanding access to healthcare services as they have recently opened three clinics in areas with the highest rates of HIV infection is a top priority for Waters. She spearheaded the development of the Minority AIDS Initiative with Wilson in 1998 and under her continuing leadership, funding for the Minority AIDS Initiative has increased to approximately $400 million per year today.

Waters’ upbringing was in sharp contrast to our current President’s whose slurs about her intelligence are DECEMBER 2018 • A&U

disgraceful. Born in St. Louis, Missouri, and raised by a single mother along with her twelve siblings, she began working at age thirteen in factories and segregated restaurants. She moved to L.A. in 1961 and worked in garment factories and at the telephone company. While working, she attended college and, graduating with a Bachelor of Arts, officially commenced her career in public service as a teacher and a volunteer coordinator in the Head Start program. She is married to Sidney Williams, the former U.S. Ambassador to the Commonwealth of the Bahamas. She is the mother of two adult children, Edward and Karen, and has two grandchildren.

A matriarch to her own family and to many, Congresswoman Waters has always supported comprehensive and equitable

Rep. Waters with L.A. Pride-goers healthcare policy. At Pride she resounded her claim, boldy declaring. “I think it is very important that we focus on comprehensive healthcare for everyone so that people are not getting sick, are not without primary care doctors and not left without knowing where to go. I think that the AIDS community has done a wonderful job in highlighting these issues, not only about HIV but in healthcare in general.

I support Obamacare—I am going to continue to support it and eventually we are going to have healthcare for everybody under one system.”

Sean Black is a Senior Editor of A&U.

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Lighting the Way Singer/Songwriter & Long-Term Survivor Henry Goldring Blazes a Trail of Song & Advocacy

by Chael Needle Photographed Exclusively for A&U by Alina Oswald

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enry Goldring treasures his voice. It allowed him to infuse his memoir, UNBELIEVABLE, with the bitter and the sweet tones of the trials and triumphs of being a longterm survivor, all the while working on his craft as a performer and songwriter in New York and L.A. Adapting his memoir into a musical (his second) allowed him to revisit versions of himself, past and present, as they look toward the future.

His voice has allowed him not only to represent his reality as an individual living with HIV/ AIDS, but also to stand up for those we have lost and those still in need. He does not see himself as part of a solo act, though; he has joined a chorus of advocacy.

His voice allowed him to come full circle and heal what cracked his heart, and ultimately move on toward brighter days.

And whether he is mining universal truths in his lyrics or fighting for the needs of the LGBTQ and HIV communities, his voice lights the way, illuminating the dreams of everyone in the margins.

When asked who inspired his musical creativity, Goldring answers: “My first ‘big-boy memory”’was at age five when my grandparents took me to New York City to see The Sound of Music on Broadway. Even at that young age I remember being mesmerized by the music and I couldn’t take my eyes off of Kurt! Then my first movie memory was The Music Man with little Ronnie Howard and—pow—I was hooked. My father was a huge Barbra Streisand fan, before she dropped an a from her name, before “People” and awards and, when her records were available in the early 1960s, he was first in line. So in addition to piano lessons (which began at age four), my musical education and exposure was musical theater and Barbra Streisand, meaning each note and phrase had to be exact and precise.” Goldring later studied music and theater at Indiana University and acting at the prestigious American Academy of Dramatic Arts in New York City.

“Then I saw Diana Ross in Lady Sings the Blues,” he continues. This wasn’t “Stop in the Name of Love” Diana Ross. This was Billie Holiday in pain and anguish with disjointed phrasing and scooped notes and heartfelt sighs. I never realized or understood you could modify a piece of music by giving yourself [the] permission of interpretation. These were Billie Holiday’s words coming from her soul. Then I discovered Tom Waits and his gravelly, gut-wrenching narratives and Joni Mitchell looking at love from both sides now and realized I had a voice, too.”

Based in Ohio, his home state to which he returned gravely ill in 1995 and where he rebuilt his life, Goldring continues to write and perform, and he is currently seeking producers for his musical. He talked with A&U about his journey.

Chael Needle: You have told your story in at least two ways—through words alone and through song. Why? Which does each form allow that the other doesn’t?

Henry Goldring: Music is magical. Songs come to me from a spiritual place that is undefinable and it becomes a personal meditation between the music and the words and me. Songs take me on an intimate journey and every person listening to a song can create an intimate journey specific to them. When I wrote and now revisited my autobiography after eight years, I needed to create a record of what happened in my life and why it was important specifically to me; my journal. Both are windows into my world. My memoir let me tell the story of a queer, HIV-positive man. My songs let me tell stories of us all.

That makes sense and I would say is much needed—to highlight the universal and particular aspects of living with HIV/AIDS. It reminds me of a passage from your memoir when you returned home to Ohio in very ill health: “I was finally a person without adjectives; simply Steven Henry Goldring and I wanted to live.” What does that moment mean for you now, some twenty-plus years later?

I remember that exact moment. While laying on a hospital gurney in my feverish, hallu-

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Top: Indya Moore as Angel; center: Mj Rodriguez as Blanca, Ryan Jamaal Swain as Damon; bottom: Mj Rodriguez, Domique Jackson as Electra, Jason A. Rodriguez as Lemar

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cinatory condition after being flown from LAX to Cleveland with a long-time friend navigating every step, there was a sudden moment of clarity. It wasn’t a voice, but at that instant I felt somebody or something or some Spirit giving me a choice. It was up to me to decide—right now—whether I wanted to live or die. The feeling was I could just “let go” and be done, or I could actually choose to live. But it was also clear choosing to live was not going to be easy; that for the rest of my life it would be my responsibility and obligation to do something to make it better or easier or sweeter for the next person. And at that moment the Chubby, Jewboy, Sissy, Faggot, Short, Big-Eared, Limp-Wristed boy was gone. It didn’t matter anymore and it meant I was free to evolve into this queer, proud man I am today.

So how does “queer, proud man” translate into your art and HIV/AIDS advocacy?

It took a very long time to get there. For men of my generation (I am sixty-three and can only speak for myself), the word “queer” was always an insult used to attack. However, I remembered something my mother—who was an English teacher for thirty years—once told me when a snotty student shouted in class, “Hey, are you a Jew?” She responded with, “Yes I am and what are you?” She owned her identity without any apology. I now own the word “queer” and wear it as a badge of honor. “Yes I am queer and what are you?” informs everything I do. As one of those “hyphenated” people in the arts (actor-writer-singer/songwriter-playwright) being queer is the subtext for my art. I don’t identify with the term “AIDS activist” but when I sing a song or act a role or write, the reality of being a “queer, proud man” and poz is always there, and hopefully other people can recognize the truth in my life to help see themselves in me. That is my job.

What are your concerns now as a long-term survivor? What do we need to address as the community ages with HIV? Specifically, money is always a problem.

As young [individuals] struggling with HIV and AIDS we lost many years of income, which means little or no retirement resources.

This is very scary. Even if disability monies keep you afloat, the hoops that must be jumped through declaring every penny with endless stacks of government paperwork adds to stress and isolation. When I use the word “isolation” I use it broadly because when you cannot afford that new sweater or that ticket to Hamilton or to fly off to that exotic foreign destination for the most recent AIDS conference, many of us feel overlooked and ostracized.

It is important to be involved, but endless DECEMBER 2018 • A&U

monthly “get-togethers” and “silent auctions” and “HRC black-tie dinners” with the same cast of characters over and over again becomes stagnant. They lose their power.

What I have tried to do—and it is not easy—is to reinvent myself through my work, which is writing.

When I originally wrote my autobiography I was searching for a path forward. However, I found others who read my story found they could relate, too, even though the events are specific to me; [we formed] a community of brotherhood/sisterhood/ personhood through hope instead of misery. And now re-releasing my book with a new foreword is a window into my past which I have used as the basis for my new musical, the future.

Instead of a gay story ending with death and despair, you go out of the theater humming and singing about life and courage, and not only the HIV community but a message for all. That is my antidote. It may sound “Pollyanna” but we all need to find that individual spark and a reason to get out of bed in the morning. Maybe one of my songs can light the way.

What are you working on right now?

As I mentioned, I am very excited because I am re-releasing my memoir, which was originally published in 2010. I have a new cover, an updated author photo and other than a few typographical corrections and edits, it is the same time-capsule of my life up to that point. As I was writing the new Forward I never realized that my book is actually the 2nd offering in a trilogy of Memoirs; the first being a one-person autobiographical musical And Now, For My Next Life, which was presented in L.A. in 1992, the second is my book and now a third, which is my brand new five-character musical with sixteen original songs titled, UNBELIEVABLE, but true.

I truly believe all the facets of my sixty-three years have brought me to this place and time. For some never-to-be-understood lucky star, I am here to tell my story when so many of my brothers are not. This new musical is my gift, sharing my story with the world. I want people to see that even in the most horrific of circumstances with absolutely no hope or reason, we can and must marshal through. Whether it is chaining yourself to the doors of the NIH or ACTing UP everywhere or singing a song. We must never become invisible.

So my dream is to have my musical produced in New York, then tour it through-

out the United States and possibly the U.K. This is not at all an “ego thing”! This is so people can actually see me, a real person at sixty-three with AIDS telling his story by examining the past and looking to the future…with old-school schmaltzy Broadway Ballads!). And I want Netflix to film it so it would be available to a wider audience.

I am also working on a “secret” Netflix project featuring LGBTQ+ people of my generation. LGBTQ media offerings are primarily “young and pretty” and “coming of age” (a phrase I will never understand because how can a teenager or twentysomething person possibly find the meaning of life? Every current media platform—Netflix, Amazon, Hulu, HBO, etc.— is overlooking a huge demographic of people with equally compelling stories which must be told, and told by us.

Henry Goldring would like to acknowledge his medical team: “I have been a patient at The John T. Carey Special Immunology Unit” (SIU) of University Hospitals Cleveland Medical Center since 1996. Although I miss living in New York, I cannot imagine receiving such expert hands-on care than I have had in Cleveland. Each person on every rung of the ladder has made my journey seamless. They are all my family.”

For more information about Henry Goldring’s memoir, visit: www.unbelievablememoir.com.

Chael Needle is Managing Editor 0f A&U. Follow him on Twitter @ChaelNeedle.

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UNIVERSAL ACCESS

How One HIV-Positive Man, Greg Owen, Became a Global Spokesperson for PrEP

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

W

hat is that moment like? That moment that you realize that you’re not just an accomplished advocate for a cause you believe in, but that you’ve become its very public face.

For Greg Owen, one of the U.K.’s most vocal proponents of PrEP, it was summed up in a recent very humorous and wry Tweet he wrote about no longer being able to hook up anonymously. It seems that all that any guy who he meets online wants to talk about is taking Truvada as a prophylactic. Great news for a cause in which he so passionately believes, but not always the greatest news for his sex life.

Greg grew up the eldest of six children in Belfast, Northern Ireland, at the height of the troubles. He remarks of it now that “my childhood was in the eighties and my teens in the nineties, it was very interesting to say the least.” He left Belfast behind in the summer of ’98 for drama college in London, graduating in ’01. In 2015 he found himself working in various bars and clubs and sleeping on the sofas of various friends. Greg knew many friends who had become positive and was well aware that he himself was at risk and decided to do something.

It all began with a new friend. Alex Craddock had recently returned from the states and filled Greg in on an amazing new prevention tool called PrEP. PrEP is a drug called Truvada, which had long been taken as part of HAART to suppress HIV in those who were already positive. It was now being prescribed as a prophylactic with up to a ninety-nine percent efficacy rate according to the drugmaker’s research, a significant improvement over the condom which can often fail and is not always used. It was a game changer in the U.S., but was not widely available in the U.K. Greg and Alex wanted to change that and started building a website in Alex’s bedroom that would educate people and enable them to obtain the drug privately. That website, IWantPrEPNow.co.uk, launched in 2015 with an initial 400 hits in the first twenty-four hours and

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the count ballooned from there, eventually being taken under the umbrella of the U.K.’s most prominent AIDS organization, the Terrence Higgins Trust, which provided access to much needed funding as well as legal representation. Due to his subsequent HIV diagnosis, it was too late for the drug to make a difference for Greg, but it ignited a passion. He saw little reason why, with a drug that was almost 100 percent effective in HIV prevention, there should be anyone, man or woman, receiving the diagnosis news he had.

But the drug still had to be obtained by purchasing it through private health insurance, an option not open to many. Britain’s NHS (National Health Service) provides medical care, including prescription drugs, universally. They had begun looking at PrEP in 2014, dragged their feet for two years and finally said no in 2016. They insisted in court that preventative care was the job of local government. Meanwhile, according to the Terrence Higgins Trust, an estimated seventeen people a day were becoming infected with HIV while PrEP was being delayed. PrEP was seen as a “lifestyle drug.” Even some prominent gay men saw HIV only in terms of reckless and irresponsible behavior. Why should government fund £450 a month to prevent it? Things are changing, trials have begun in limited circumstances, but activists like Greg still fight every day. He appears regularly on talk and news shows, informing the public about the fight for a drug that he believes all people should have access to. A documentary about Greg and Alex, and others, The People vs. The NHS: Who Gets the Drugs? aired recently on BBC2. He continues to run I Want PrEP Now and its website, building on its successes and enabling many to access this game-changing preventative care.

The news out of the U.K. concerning HIV and its treatment and transmission is remarkable. According to Public Health England, HIV transmission rates are down by a third nationwide, forty percent in London alone. A large percentage, ninety-six percent of those

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diagnosed (eighty-seven percent), are on treatment with ninety-four percent of those being virally suppressed. People are accessing testing and treatment in large numbers, but as Greg is the first to admit, it’s a group effort with many coming before him who fought on the front lines for this good news to be possible.

I recently spoke to Greg by phone from his home in London. One of the first things that struck me was the speed at which he talked. But what also struck me was just how much he had to say and the heartfelt passion which he has for the subject of HIV prevention. And it’s this focus on prevention that makes Greg so unique as a positive man. Not only prevention among his own demographic, but prevention amongst all key groups, some of whom aren’t seeing these recent successful numbers.

John Francis Leonard: What were your earliest experiences with HIV/AIDS? Greg Owen: I tell this story sometimes when I do speaking events. My first memory was as a very camp kid. I used to do my mum’s hair and I did it quite well actually. My mom and dad were talking to my uncle at a family BBQ and somehow that came up in conversation. Someone asked who had done her hair that day and she said that Greg had done it and that maybe he’d be a hairdresser one day. My dad turned to her and barked, no son of mine is going to be a hairdresser and die young. There was a duality to that comment. I was very aware that something wasn’t sitting right with him. First of all the fact that I was gay and effeminate and the second thing, which I didn’t quite understand at the time, that that somehow meant death.

I make a joke of it now, I mean who were all these hairdressers dying of accidents at work? [Laughs.]

But obviously he was talking about AIDS. That was the time of Rock Hudson and Freddie Mercury’s fight with the disease. So those are my earliest memories of HIV/AIDS—that my sexuality was very much entrenched in death and infection as far back as I remember. I also share a birthday with the late Princess Diana who had such a hands-on approach to AIDS patients at a time of great fear, so I always took an interest in her.

What brought you to your work in HIV prevention?

Early on, I had wanted to do a campaign about undetectable meaning untransmittable. I wanted to get involved [before my own diagnosis]. It involved people I was close to and people I would see out. I myself was out in and around SoHo, going to sex parties, and I would see a person who was recently diagnosed at one of those parties left alone in a corner or asked to leave the party altogether and my heart would break. Not just for that person, but for the people I loved who were in the same situation. I didn’t expect to become HIV-positive myself and be in the role that I’m in now, but even so all the crossroads in this journey and all the decisions I made made it incredibly personal for me.

DECEMBER 2018 • A&U

Didn’t you initially want to go on PrEP yourself ?

Yeah, that’s the whole story and kind of why I ended up as one of the most visible PrEP advocates globally, I guess. I had been looking at things [about PrEP] on Facebook from the States and had been thinking about it in 2014/2015. I was initially going to go to a clinic and use post-exposure prophylaxis (Truvada plus other medication). Then a friend of mine said that he had two months of Truvada [as PrEP] left and that I could have it after I posted on Facebook that I was thinking about PrEP and it was perfect and saved me from lying and getting PEP. I went to pick it up that weekend. Soon after, however, I myself was diagnosed HIV-positive after testing negative just earlier that same year. When I came off PEP, I had thought I was negative, but I came to PrEP just a little too late. [Editor’s note: To use PrEP effectively, it is important to first be tested negative and access it through prescription.]

Even though you yourself are already positive, the biggest drive for you is still prevention. Tell me a little more about your motivation as well as your fight for PrEP in the U.K. It makes really, really clear sense to me and I think it’s something that a lot of people didn’t get when I first started. It was something that I was driven to do because I found that the situation that I found myself in was needless. It didn’t need to happen. I could see a solution that could prevent transmission, but not for everyone because everyone couldn’t afford to buy PrEP, so it wasn’t equitable.

But it seemed to be the only solution when nothing else was on the table—so I acted out of necessity. So for me, it’s not a even a case of the fact that I myself can’t take it.

Also, what people didn’t get when I first started was that if you become HIV-positive, why would you not want to help other people to prevent the same thing happening to themselves? That was something that jarred me, that people would be surprised that this is my focus. But the important thing is that above and beyond the fact that this drug can prevent people from becoming HIV-positive, is that it reduces stigma. And if we’re reducing stigma and starting to have these conversations to remove this divide, and that’s the progression within our community— then it would make sense that in the general community, sexual, social and mental health would increase as well. I don’t see one standing in isolation of the other. It’s all part and parcel of the same package in addition to U=U [Undetectable=Untransmittable]. I have the access to incredible medication, which is lifesaving treatment, due to the people who came before me. So it makes sense to pay that forward myself. That’s why I do what I do.

With PrEP and U=U, the battle against HIV/AIDS has changed, what are your thoughts about that and why are condoms still such a sticking point for some people?

I hate that conversation about condoms! In the absence of any viable alternative, you really have to

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A&U â&#x20AC;¢ DECEMBER 2018

drive home the one tool we can use. Abstinence doesn’t work [because sexual people eventually have sex] and monogamy, if it even exists, is flawed, so we need to be real. The only tool in our hands and the only tool we could see in our hands during the sex we were having and the sex we were accountable for was the condom. So in the absence of any viable alternative, of course, condoms had to be emphasized and of course people had to modify their behavior. But I have a real problem with that because people didn’t always want to use those tools. Now that there’s a viable alternative, where we find ourselves [with PEP and PrEP] is in a biomedical age of HIV prevention.

We have the tools and can have those conversations in our communities, with each other, and with our health care providers. And also, I think that if we instill in ourselves that condoms are the only safe way to have sex we are asking a generation, and I’m talking specifically about gay men now (particularly my own generation and above who lived through the actual trauma of a plague), to un-think everything they learned in a climate of fear and death to start to unlearn those things. Asking them to really get their heads around that. Then it’s not surprising that there’s pushback because generally most people act out of what they think is right or good. They’re behaving in

“

y dues

I’m paying m

cial situations or access to insurance, even geographical concerns. But here in the U.K., we don’t have that excuse.

It’s free healthcare to anyone who chooses to access it, so it’s definitely something cultural. It’s there for everyone and it’s our job to make sure everyone gets that care.

There’s a real problem here with late diagnosis and the black, African, heterosexual community is within that demographic. In the future, if we continue to see the drops in MSM over the coming years our jobs will still be really hard. It’s suddenly going to be an epidemic for women and people who have heterosexual sex who aren’t aware of the risks. It’s going to be much harder to target those groups and cost a lot more money and be a lot more resource heavy. But I think our work will change from quantity into quality. There’s going to need to be some very, very targeted work. And again, it’s not necessarily work that a white, cis, HIV-positive gay man should be doing for people who aren’t like me, but I’m happy to mentor and share knowledge and support. But these are the kind of campaigns and projects that need to be run and delivered by the people who they’re for. There’s only so much I can do.

But I think that in the U.K. we’re at the cusp of the epidemic changing so it would make sense for us to invest in those other groups and those other communities and do some of that highly targeted work now so we’re ready when things

who cam to the people

e before me

g much to hope for. when there was no hope and nothin

a way that they think is the right way to behave. You’re almost asking people to go against what they feel is the right thing to do and that’s going to take some time and effort. But it’s not helped by muddying the conversation by always talking about other STIs or by always bringing morality, judgment, or sexual behavior into it. We need to separate that into two different conversations.

What do you see as the future of HIV care and prevention looking like? What are we looking at now as opposed to ten, twenty years ago?

I can tell you what is different now and I can tell you what I think is going to be different in the very near future.

I’m new to this sector. I’m paying my dues to the people who came before me when there was no hope and nothing much to hope for. They did their best in very trying circumstances. We’re only beginning to see effective HIV treatment and prevention. Not too many years ago, we were seeing HIV rates rise and that’s changing now, changing quite rapidly. But the change is being driven by a decrease among gay and bisexual men, but not all gay and bisexual men, so there’s a huge inequity still there. The interesting thing for me, being the new kid on the block, is that this inequity thing is historical; it’s not going to be a quick fix, but that doesn’t mean that we don’t have the responsibility to fix it. The epidemic is about to change. That inequity is among black gay and bisexual men—they’re fifteen times more likely to be infected. But we have access to free healthcare here. In the States it might be driven by finanDECEMBER 2018 • A&U

do change in the very near future.

How is the battle with the NHS and full coverage of PrEP going? I know this has been a major focus for you and your organization.

Oh God! I just can’t! [Heavy sigh.] I’ve made a lot of noise, but I can’t take all the credit for that. There’s been a lot of effort including legal action. In Scotland, PrEP is free to anyone who needs it. In Wales, it’s an uncapped trial.

First of all, in Scotland, it’s only available in sexual health clinics, and we know here in England that women don’t really access those. So until it’s integrated into G.P. [general practitioner] services, reproductive health, and drug and alcohol treatment, it won’t make a difference. It’s the same in Wales. There’s no cap, but there are huge waiting lists for PrEP. In Northern Ireland there’s a trial, but again, you can only access it in one place and in one hospital. That’s a four or five-hour car ride every month for a lot of people. In England, we’re turning gay and bisexual men away from clinics with no PrEP and we know of many men becoming positive either because they couldn’t get it in time or they were turned away because there were no spaces. It’s a total mess.

There are many men self-sourcing, many out of social conscience because they can afford it, so we don’t actually see accurate sales figures. But still many men can’t get on the trial and can’t afford to buy it themselves. In a nutshell, it’s a hot mess, makes no sense to me, and I could scream most of the time.

John Francis Leonard interviewed writer and producer Our Lady J for the November cover story.

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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

Becoming Savvy

learning how to manage personal finances as you navigate living with hiv/aids

illustration by Timothy J. Haines

G

rowing up, most of my friends didn’t really have to think about money. They weren’t exactly rich, but there really weren’t any serious financial restrictions on their lives. They were able to get jobs at the age of fourteen as long as they had working papers. They didn’t have to be concerned about how much money they might earn because it really didn’t impact anyone else.

That most certainly wasn’t the case with me. I was born of a teenage mother and father who worked low wage jobs to support me and my younger sister. This was further complicated by my sister’s diagnosis as an infant: cerebral palsy. Just like that, my family was launched face first into a world filled with prescriptions, therapies, Medicaid, Social Security Disability, and a thousand other difficult-to-navigate resources.

So many kind and well-meaning people helped us along the way, but had it not been for my mother’s savvy, her incredible gift for decoding legal and financial jargon, for navigating the seemingly impossible to find hoops and then elegantly floating through them, my family wouldn’t likely have fared so well financially speaking.

What many people don’t understand is that when you have a severe medical condition in your family, you are absolutely required to be savvier than the average individual where money is concerned. If your household income inches up just a bit too far, you might suddenly find that you “make too much” to qualify for some of the resources on which your family depends. My mother became a master at puppeteering our financial world, and I was fortunate enough to become her pupil.

She taught me how to navigate financial resources beyond that which my sister needed directly. She learned about taking advantage of educational benefits at work, and earned her degree at a tremendous discount. Shortly thereafter, she taught me how to get my residency changed so I could go to school out-of-state at an in-state price. My family learned how to maneuver complex financial systems out of necessity.

Since I was only five when my sister was diagnosed, I grew up learning to be savvy with my cents by carefully watching DECEMBER 2018 • A&U

my mother. When I turned eighteen and relocated to Oregon to attend the university I had selected, I began working in the banking industry, where I went on to spend nearly a decade of my adult life. At the time, I was largely unaware of the gift I had been given with such an employment opportunity. At a relatively young age, I was being educated on topics such as credit, savings products and strategies, auto loans, credit cards, credit clean-up, retirement accounts, FDIC and NCUA Insurance, mortgages, avoiding fees, and many others. I went on to study income tax preparation and became licensed in the state of Oregon, where I also held membership with the Oregon Association of Tax Consultants until 2013 when I relocated to New York City. In 2015, I began writing in the personal finance arena by starting the blog “Sense with Cents,” following it about a year later with the travel blog “Travel Cents,” which focuses on balancing spending choices to maximize a vacation budget.

Now I have turned my attention to helping people living with HIV/AIDS manage their money.

People living with HIV/AIDS have a unique set of financial circumstances. While a myriad of resources have been made available over the years, each one contains its own

eligibility criteria that can restrict the finances of those dependent on them. Moreover, even for those with private insurance plans paid by an employer, there are further expenses related to deductibles and co-payments vying for your hard-earned dollars. No doubt these things can feel overwhelming, and make financial freedom seem out of reach, but I’m here to assure you that just isn’t the case. Even within the financial constraints that come with having HIV/AIDS-related expenses, there are still opportunities at hand.

We’re all trying to lead our best financial lives. Helping people get there is the ultimate goal of this column. I am here to provide the education that will empower each of you to understand the choices that are out there, and the courage to take another step forward to leading your best financial life. Over the next several months, we’ll explore topics such as paying off credit card debt, the benefits of various retirement account options, student loan debt, emergency savings, and credit. Specific topic requests are encouraged, too!

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

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LifeGuide

by

M

ultilayered controversy envelops the appointment of Dr. Robert R. Redfield to be the Director of the Centers for Disease Control and Prevention (CDC), the preeminent national public health institute of the United States. Dr. Redfield took over the agency on March 26, 2018.

The first controversy to arise is Dr. Redfield’s lack of experience. Although he is well respected for his clinical work, he has no experience working in public health or managing a public health agency. Before joining CDC, he was a tenured professor of medicine and microbiology at University of Maryland, Baltimore, Chief of Infectious Disease, Vice Chair of Medicine and a co-founder and associate director of the Institute of Human Virology (IHV) at the University of Maryland School of Medicine. During the 1980s, in the early years of the AIDS pandemic, Dr. Redfield led the research team that first demonstrated conclusively that the HIV retrovirus can be heterosexually transmitted. His research and clinical experience are unimpeachable.

But does that qualify one with no managerial experience to run a government agency with 15,000 employees and an annual budget of $11.1-billion (FY2018)?

Then there was the matter of Dr. Redfield’s initial salary at the CDC, a whopping $375,000 per year, which Laurie Garrett at CNN (May 13, 2018) labeled “unusually, astoundingly high” for any government agency head. The huge salary—nearly twice as much as earned by Dr. Francis Collins, director of the National Institutes of Health, or Scott Gottlieb, the Director of the Food and Drug Administration, or any of Dr. Redfield’s colleagues at the CDC, including Dr. Anthony Fauci—was legally permitted under Title 42, a statute meant to help attract highly regarded scientists who might not otherwise be interested in a particular job. But Redfield certainly was interested— he has reportedly wanted the CDC leadership position since the George W. Bush administration (when he was first vetted for

56

CDC Controversy

Hank Trout is our nation’s hiv health in danger?

the position). To quiet the matter, Dr. Redfield agreed to a reduced salary—$209,700 per year, which is still appreciably higher than most other agency heads.

Further, during the 1980s, as the Army’s chief AIDS researcher, Dr. Redfield strongly supported mandatory HIV screening for all military personnel. Recruits who tested positive were immediately barred from military service. Laurie Garrett, again:

“[Dr. Redfield] designed policies for controlling the disease within the U.S. military that involved placing infected personnel in quarantine and investigating their pasts to identify and track possible sexual partners.

Soldiers were routinely discharged and left to die of AIDS, humiliated and jobless, often abandoned by their families.”

In 1992, while at the Walter Reed Army Institute of Research, Dr. Redfield was part of a team behind an “AIDS vaccine” called VaxSyn, manufactured by a Connecticut company, MicroGeneSys. Dr. Redfield claimed that a small clinical trial had shown VaxSyn could protect the immune systems of infected soldiers, limiting the worst outcomes of AIDS. This was untrue.

The Army investigated Dr. Redfield, eventually concluding he had made an innocent mistake. Dr. Redfield continued to strongly support VaxSyn, pushing Congress to fund a $20 million clinical trial on HIV-positive men. VaxSyn never worked.

Perhaps most disturbing, Dr. Redfield worked closely with W. Shepherd Smith, Jr. and his right-wing anti-LGBTQ Christian organization, Americans for a Sound AIDS/HIV Policy, or ASAP.

ASAP maintained that AIDS was “God’s judgment” against homosexuals—that people with AIDS were being punished for sinning. Dr. Redfield wrote the introduction to a 1990 book, Christians in the Age of AIDS, co-written by Smith, denouncing both the safe-site distribution of sterile needles to drug users and the distribution of condoms to sexually active adults. Troublingly, he dismissively referred to LGBTQ anti-discrimination programs as the efforts of “false prophets.” In the early 1990s, ASAP and Redfield also backed H.R. 2788, a U.S. House bill sponsored by radically homophobic Rep. William Dannemeyer (R-California). It would have stripped professional people with HIV of their licenses (nurses, dentists, teachers, et al.) and would have effectively quarantined them.

Put bluntly in the newsletter of Progressive Secular Humanist, “Bottom line: Trump’s new CDC director, Dr. Robert Redfield, is yet another dangerous Christian extremist holding a prominent position in the Trump administration.”

CNN refers to Dr. Redfield’s appointment as “an abysmal choice.”

Mark S. King, known for his blog “My Fabulous Disease,” told A&U, “Obviously, a man connected to anti-gay and anti-persons with HIV causes has no business running an agency that controls research and funding for HIV prevention and care. Stigma remains a driving factor in new transmissions and HIV care, and yet Enfield’s past shows no indication he is interested in combating it. He would rather take far-right, socially conservative money and live in his righteous indignation, which is such a dangerous disservice to people living with HIV and those most at risk.”

“To what extent will the United States government’s response to the continuing HIV/AIDS crisis be influenced or, perhaps, even hindered by the new CDC director’s personal religious prejudices?” is a concern we will need to monitor closely.

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

Test Fail

few boomers are getting screened for hep c

illustration by Timothy J. Haines

I

n 2012, the U.S. Centers for Disease Control (CDC) and the U.S. Preventative Services Task Force (USPSTF) announced that Americans born between 1945 and 1965, the so-called baby boomer cohort, should get tested for the hepatitis C virus (HCV). One rationale was that prior to 1992, blood banks did not screen for HCV, and people receiving transfusions before then could have been exposed. The CDC estimated that testing all boomers would identify 800,000 infections, and with linkage to care and treatment, would prevent more than 120,000 HCV-related deaths. The CDC also estimated that boomer testing would save between $1.7 and $7.1 billion in liver disease-related costs.

But boomers don’t seem to have gotten the message. A study published in in the July 2017 issue of American Journal of Preventive Medicine showed that less than fourteen percent of the boomer cohort had been tested. A study published in the August 2017 in Public Health Reports, found that less than three percent were screened for hepatitis C in the year following the CDC’s recommendation.

Another study, published in March in Cancer Epidemiology, Biomarkers & Prevention, which explored the rates of testing for Americans born between 1945 and 1985, found that females were less likely to get tested for hep C than males. Researchers also found that HCV testing rates were lower among Latinos and Blacks compared with whites.

According to Tom Nealon, President and CEO of the American Liver Foundation, stigma about HCV and physician ignorance are keeping people from getting screened.

“People come up to me and say ‘I wasn’t an IV drug user,’ so I can’t have [HCV],’” Nealon told A&U. “And worse, they say, ‘my primary care physician said to me, ‘you weren’t an IV drug user, so you don’t need to get tested.’ The primary care physicians are the biggest obstacle to testing. They don’t know enough about it.”

Though Nealon says patients should be advocates for their own health, he also believes DECEMBER 2018 • A&U

they’re being hindered by misinformation about the disease.

“People are reluctant to find out they have liver disease and won’t ask their doctor to test them,” Nealon said. “I can understand five years ago before there was a cure. You can now get cured. Most insurance plans will cover the cost of the test.”

Some states, including Pennsylvania and New York, require physicians to offer hepatitis C testing to all boomers who visit a clinic or primary care doctor for a check up, or who are admitted to a hospital for any reason. In 2015 the University of Michigan Health System launched an automated electronic medical alert that notifies a doctor if a patient falls into the at-risk age group. The alert urges physicians to offer HCV screening and provide patients with educational materials.

HCV can spread through contact with an infected person’s blood, but the infection typically doesn’t produce any symptoms. Most infected people eventually develop chronic HCV infection and many of those will require liver transplants.

According to the CDC, up to 4.7 million Americans are living with HCV. Nealon would also like to see more states to follow the lead of Pennsylvania and New York, but also be proactive about educating primary care doctors about the importance of HCV screening.

For its part, the Liver Foundation’s web site, liverfoundation.org, and helpline, 800-goliver, as well as occasional PSAs, offer valuable information. But Nealon says what would really help is a celebrity endorsement for testing.

“There has to be someone like Taylor Swift or Lady Gaga or whoever that could make some statement or a Tweet. They could say I have a family member or friend with liver disease, or a relative

whose life was saved because they were tested and treated.”

“If, say, Ebola were coming to the U.S. and there was a cure, people would clamor for it,” Nealon said. “If there’s a disease affecting an estimated four million Americans, why not get them tested, treated and cured?”

Previous treatments for hepatitis C, including ribavirin and interferon, were lengthy and arduous, but protease inhibitors and even newer antiretroviral treatments for HCV can eliminate the virus in a fraction of the time. Many insurers cover at least one of the newer antiretroviral meds.

Boomers account for more than seventy-five percent of Americans with HCV, and an estimated one in thirty boomers are infected with the virus. In addition to the boomer cohort, The USPSTF recommends HCV testing for incarcerated people, those who use intranasal drugs and people who get tattoos from unregulated artists.

The growing opioid epidemic, however, might soon produce a rival cohort at risk of HCV infection. The CDC found that in 2016, the highest overall number and rates of new hepatitis C infections were among people in their twenties.

Larry Buhl is a multimedia journalist, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl.

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Cure Research with a Heart

T

o date there are over 100 documented cases of HIV remission and one occurrence of HIV eradication. Researchers are currently investigating numerous HIV cure and remission strategies including monoclonal antibodies; gene therapies; stem cell transplants (such as the procedure that cured Timothy Ray Brown); and post-treatment control and therapeutic vaccines/ other immune-boosting agents that would allow the immune system to more effectively control HIV. Also being studied is a new approach currently known as ”block and lock” where researchers attempt to essentially ‘lock down” the HIV reservoir to prevent dormant HIV from becoming active.

The most widely recognized and studied approach is the kick and kill strategy, which aims to reactivate the latent HIV in viral reservoirs and then kill these infected cells with a combination of antiretrovirals and immune-boosting agents. Although a recent kick and kill study failed to achieve its goals, as reported in last month’s Destination: Cure column, several other kick and kill studies are planned with varying components.

When investigating these strategies, it’s essential to keep in mind that in addition to efficacy, an effective HIV cure strategy must be one that is not only safe and efficacious but also is affordable to the entirety of the world.

As such, strategies such as stem cell transplants and costly gene therapies, if they were to work, would likely have a limited reach excluding much of the developing world, where the majority of people living with HIV reside.

Although some strategies will only be applicable to certain people or populations, a viable overall cure must be accessible to everyone.

At AIDS 2018, a new class of drug called RNA helicase translation inhibitors was unveiled. Translation inhibitors (TI) are being researched and developed as an HIV therapeutic that could also be applicable in a kick and kill strategy. Numerous aspects of this class of drug, as well as the company that is developing TIs, check all the boxes of an intervention worthy of attention.

Unlike current antiretrovirals that work against HIV itself, TIs target a human host

58

factor, DDX3. Although DDX3 is involved in several cellular functions of RNA metabolism, preclinical and mice assays have shown no toxicities related to inhibiting DDX3. Strong activity against HIV replication, including numerous drug- resistant strains, has been observed in preclinical research and drug resistance is expected to be minimal or unlike-

ly. A DDX3 TI approach could also be used as salvage therapy to treat those with multi- drug resistant HIV, or in addition to ARVs, to limit the occurrence of drug resistance.

By inhibiting the DDX3-mediated viral protein translation apoptosis (cell death) can be induced. If this is shown in vivo in the presence of HIV, it could disrupt the establishment of viral reservoirs, thus making DDX3 translation inhibitors a good candidate to be studied as part of a cure strategy.

In addition, DDX3 is involved the replication of various viruses, tumor proliferation and the above-mentioned inflammation.

Thus, as well as activity against HIV replication, it may also show benefit against several HIV-related comorbidities and co-infections such as hepatitis C, Kaposi sarcoma, and immunesuppressive-related tumors. TIs are expected to reduce the inflammatory state associated with HIV, directly acting on the production of inflammatory mediators as observed in cellular assays. HIV-related inflammation has been associated with numerous HIV co-morbidities that can greatly impair health, quality of life and survival.

“Translation inhibitors are promising compounds to treat HIV infections and in particular to attack resistance. If you target host factors crucial for the viral replication

[such as DDX3] it makes it much more difficult for the virus to escape because the protein cannot mutate to escape the inhibition.

A combination of both inhibitors against host factors as well as antiviral compounds will be one of the best combinations of drugs you can have,” stated Prof. Dr. T.B.H. Geijtenbeek, Head of the Department Experimental Immunology at the University Medical Center of Amsterdam.

The makers of translation inhibitors, First Health Pharmaceuticals BV, have therapeutics in development for numerous viral infectious diseases such as HIV, HCV, Zika, Ebola and Dengue fever, as well as anti-tumor agents for several forms of cancer. Typically, when I write about notable research, my focus is solely on the drug and the research that makes it credible. However, in the case of translation inhibitors, the company behind the drug and their mission play a vital role, in addition to the research, in why we should focus on TIs and what makes them viable as an HIV therapeutic/ potential component of a kick and kill strategy that could be used across the globe.

First Health Pharmaceuticals BV has created a non-profit organization founded with the purpose of promoting life science R&D for the benefit of humanity in general. First Health Pharmaceuticals BV has pledged to donate a portion of the proceeds from their therapeutics and the largest part of its antivirus pipeline to its non-profit First Health United foundation, to provide their medications free or at cost to low-income countries, especially in the sub Saharan region. Thus, drugs created and approved for any of the indications targeted, including an HIV therapeutic or cure, will be made accessible to all who need them.

It’s extremely heartwarming and rare to see a pharmaceutical company that values lives over profits. I will be closely following the development of this new class of drug and reporting my findings in future columns.

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 • DECEMBER 2018

illustration by Timothy J. Haines

translation inhibitors may be part of a therapeutic strategy

LifeGuide

The Next Waltz

by

Jeannie Wraight is naltrexone the next drug to change

the course of the aids crisis?

illustration by Timothy J. Haines

A

recent study showed one potential intervention, naltrexone, successfully promoted viral suppression in newly released ex-offenders who struggle with drug or alcohol addiction. Naltrexone may also prove effective in treating other conditions related to HIV. Twenty years of research on naltrexone show that the full potential of this drug to treat HIV patients is currently being overlooked. In connecting the dots of numerous studies on naltrexone, we see an emerging picture of one drug, used in various forms, that may be a game changer on several levels for HIV-positive people.

Two studies presented at this year’s Conference on Retrovirology and Opportunistic Infections, which were discussed at AIDS2018, found that a higher number of newly released ex-offenders who had either an alcohol or opioid use disorder remained virally suppressed six months after they were released from prison when taking extended-release naltrexone, compared to those who were not given naltrexone. Ex-offenders face numerous obstacles upon release from prison/jail.

For some, addiction complicates these issues and can lead to non-retention in HIV treatment and care and a lack of adherence to ARVs. When asked why he thought there isn’t a greater focus on naltrexone, Dr. David Malebranche Associate Professor at the Morehouse School of Medicine, stated: “Naltrexone would be a good intervention option for HIV-positive people, particularly with the current opioid epidemic. As a medical and research community we focus on interventions such as bnAbs [broadly neutralizing antibodies], two-drug regimens, vaccines, etc., and forget about intersecting epidemics—addiction and behaviors that influence sustained engagement in HIV care. We have all this great HIV science yet if a person has mental health issues or drug addiction, we have to start there; we have to focus on what’s not as sexy and may need further studies.”

This data, combined with a separate

DECEMBER 2018 • A&U

NIH-funded study that demonstrated naltrexone’s ability to help prevent drug relapse in newly released ex-offenders, strongly calls for more studies to determine if naltrexone should be offered to people living with HIV/AIDS struggling with addiction, in order to decrease the likelihood of relapse, remain consistent in receiving treatment, and maintain viral suppression.

Naltrexone is used in several formulations including longacting naltrexone for drug and alcohol abuse sold under the brand names ReVia and Vivitrol (among others). Naltrexone, including low-dose naltrexone (or LDN) is being studied for several uses in PLWHAs. In 1995, Bernard Bihari, MD, discovered LDN’s effects on PLWHAs with two clinical trials which demonstrated the immunological effects of LDN on immune recombination in the early years of the HIV epidemic. The first study showed no CD4 loss in ARV-naive patients in those on LDN compared to significant CD4 loss in controls. The second study showed a substantially higher increase in CD4 cells in those who added Lodonol to their ARVs versus those on ARVs alone.

An NIH-funded study of LDN, conducted at Boston Medical Center and St. Petersburg Pavlov State University, is currently investigating the drugs effect on inflammation and pain in PLWHAs who abuse alcohol.

A Mali study published in 2011 found no AIDS-related symptoms and only a marginal CD4 decrease in ARV untreated patients on LDN. In conjunction with other studies, this study remains significant today because it shows the potential of LDN to enhance the immune system.

A study of the use of a formulation of LDN, Lodonal, in Crohn’s disease showed a significant decrease in symptoms. Data demonstrated CD4 recovery that was attributed to decreases in inflammatory cytokines. Immune Therapeutics, a small biotech company, is currently pursuing

a Phase IIb/III roll-over pivotal study in people with both HIV and Crohn’s disease. Existing medications to treat inflammatory bowel diseases (IBD), such as Crohn’s disease and irritable bowel syndrome (IBS), can cause significant immune suppression which can be more damaging in PLWHAs than those with IBD alone. Lodonal is hopefully the first in a line of new therapies needed for people living with HIV and Crohn’s or IBS. In a study conducted at the University of Minnesota, researchers discovered that naltrexone acts as a non-selective opioid receptor antagonist. Naltrexone affected HIV expression in CD4 lymphocyte cultures which play a role in the potentiation of antiretroviral drugs and suggest that clinical trials should be considered of naltrexone as an adjunctive therapy of HIV infection.

Separately, and collectively, these studies indicate that naltrexone, in its various forms, is a unique and versatile therapy that holds potential for several uses in HIV disease and other conditions.

PLWHAs struggling to recover immune function and those addicted to opiates and alcohol may strongly benefit from its use and guidelines to assist these key populations of PLWHAs should be considered to help maintain viral suppression and treatment retention.

Jeannie Wraight writes the Destination: Cure column for A&U.

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For the Love of French Fries (though healthier choices may be in order)

This is not sex negativity.

I am a fan of sex. In fact, I am a jock-wearing, penis-obsessed, 2-gage PA-having champion of sex. My name has been written reverentially in black magic marker across certain well trafficked gloryhole-filled restroom walls: “For a good time contact Corey Saucier the sex king.”

And trust me every time my name is posted on some dirty bareback “Quick Connect” wall like a hand-crafted personal note for exactly what Bill and Bob and Jerry and Andre and Tyreke were needing, you should know, that I have earned every bit of esteem my name fosters when whispered in hush tones like the answer to an exam from masked stranger to masked stranger over the thick musk of lust, testosterone, and lovely congealed white puddles on the floor (that through some sad series of unfortunate events managed to miss their intended target). I am the classic reference of Margaret Cho’s “AssMaster!“ and there is not a sex negative bone in my body. But fast food is not a healthy aspect of the human diet. I think perhaps it’s not good for the system to eat so much low-quality quick and easy sex ordered from free apps at two in the morning.

This is just a thought.

I may have wandered just a tad away from the path of my point.

Lets start with French fries.

Oh, that all things that mattered would begin and end with French fries—hot, golden, lightly salted, French fries.

How many more times can I get away

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with writing “French fries” before the integrity of this article deteriorates.

You can only have so many French fries (no matter how good the sex, no matter how pretty the person, or how pure your intentions) before the meal is no longer healthy—and you might have to consider a healthier side dish.

French fries are delicious, cheap, and easy (even vegan) but they are not healthy and do not nurture the body.

Okay, again I think I may have been distracted by America’s very favorite snack.

But what about the other kind of snack. PrEP has made us so much braver.

Undetectable like some prayer answered thirty-years too late has finally made us all safer. And because penicillin and amoxicillin still works for most of us, the boys are doing triple summersaults and blindfolded backflips with no nets; and it’s a beautiful thing to see. It’s like when processed food became the answer to world hunger and the beautiful blue eye shadowed White wives of the 1950’s were able to cook a three-course meal in less than five minutes and the “TV dinner” revolutionized the “family meal.”

So easy.

So fast.

And Salisbury steak for EVERYONE! And then we all got fat and diabetic.

So yes this is a magical time. We can order any kind of sex we want, with any of the most beautiful and double-jointed men on the planet, and have them delivered to your home in under thirty minutes, and it is FREE! But I wonder if we are all starting to get fat. Not that there is anything wrong with getting fat. I like my men thick. I love to order a 250 pound, 5’5” bearded Top for a late night snack when I’m bored and feeling hungry.

But if you are anything like myself you have ordered from the same restaurant five times this week—and because everything is so good (and did I mention free) you keep trying new meals from off the menu—and it’s starting to become a habit—and the neighbors are noticing that the delivery man is at your door every night at ungodly hours (sometimes more than once)—and the plastic wrappers are piling up in your bedroom—and even the sexiest thing on the menu is now old hat—and you keep trying to spice it up with more and more hot sauce—and your friends are worried about you. You don’t even put on pants to open the door anymore. And the last time you were offered a delicious home cooked meal by a beautiful Norwegian with red hair and twinkling eyes, you didn’t return his call and just ordered your favorite thing off of Scruff again.

And this is a problem.

And it doesn’t even have anything to do with HIV or promiscuity or risk. (And I PROMISE I’M NOT BEING SEX NEGATIVE). But it is too much cheap junk food. And we must start making healthier choices; and remembering what it means to eat real food again.

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 • DECEMBER 2018

illustration by Timothy J. Haines

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am not being sex negative.

I promise.

I know it sounds like I am about to say something about reducing partners, and choosing higher quality pairings, and I’m sure one out of ten dentists will interpret it as a criticism of the current hookup culture. But if they do, they have entirely missed the point. And this is probably why no one goes to dentists for sexual advice.

S D AI OF

BOOKS

Thirty Years Behind Bars: Trials of a Prison Doctor

by Karen Gedney, MD DRG Consulting LLC

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t’s 1987 and in this gripping, true-life account of life as a prison doctor, Karen Gedney writes of the almost insurmountable challenges she faces from day one.

Dr. Gedney received a medical school scholarship from the National Health Corps contingent on her serving a four-year period in an underserved area of their choosing. A local medium security prison is the last place she expected, but, glad to not have to relocate, she is determined to give it her all and remains long beyond the required four years.

The medical department she finds is woefully understaffed and underbudgeted and she is soon left with a recalcitrant staff and without a supervising doctor. Whatever she faces, however, she does with her humanity and integrity intact.

Being 1987, AIDS is coming to the forefront as a major issue for the penal system.

Two years previously, in her facility alone, all patients were tested for HIV and 120 out of 4,500 inmates tested positive for HIV. At a time when AZT was the only known treatment, the prison is at the cusp of a major health crisis and a public relations nightmare.

Dr. Gedney finds no viable plans in place, however. Her direct medical supervisor is facing a cancer diagnosis and despite a valiant effort to continue his work, soon succumbs to his own illness. Facing an uphill battle under some of the toughest conditions imaginable, she manages to push forward. One of the biggest problems she faces in this fight against HIV/AIDS is the fearful and prejudiced prison staff. With no protocol in place, their fears get the best of them and even her nursing staff see an HIV diagnosis as fodder DECEMBER 2018 • A&U

for gossip and fear mongering.

This fascinating book gives yet another perspective in the early fight against HIV/ AIDS and is written by a talented medical professional who brings us a compelling narrative written in a clear voice and with a compassionate heart. From her battles dealing with the most serious health problems to actually being taken hostage, this is a fascinating read written by a physician who served an under-served prison population that any layperson will find entertaining and informative.

—John Francis Leonard

FILMS

Bohemian Rhapsody

Directed by Bryan Singer Twentieth Century Fox

making. This November, the long-awaited Freddie Mercury biopic, Bohemian Rhapsody…finally happened. For this particular movie, I even set foot in a movie theater—a surprisingly pleasant experience in itself.

Bohemian Rhapsody attempts to recreate the kind of Queen music that made many of us lifelong fans, as well as to introduce younger generations to a Queen level of music artistry. In the process, the movie captures only a snapshot of Freddie Mercury’s life, without revealing much that we didn’t know about the legendary singer.

The opening scene shows Freddie Mercury getting ready for the 1985 Live Aid concert (a dual-venue benefit concert taking place at Wembley Stadium in London and John F. Kennedy Stadium in Philly), and then stepping out on stage, about to perform; the last scene captures an almost full rendition of that real-life, memorable Queen performance. In between, the actual story takes place, spanning over a decade and a half, from the seventies to the mid-eighties. Bohemian Rhapsody introduces us to a young Farrokh Bulsara working at London’s Heathrow Airport, and also to his family. It takes us along on his frequent nightclub escapades, where he discovers a band called Smile. As its lead singer leaves the band, Bulsara takes his place, and then changes its name to Queen and his own name to Freddie Mercury (Rami Malek, known for his roles in Mr. Robot, Night at the Museum, Larry Crowne).

We also meet Mary, who becomes “the love of [his] life,” as well as the other Queen members—Brian May, played by Gwilym Lee (The Tourist), Roger Taylor (Ben Herdy, X-Men: Apocalypse), and John Deacon, played by Joseph Mazzello (Jurassic Park).

As we follow them on their journey to

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any years ago, as a kid, I discovered the music of Queen, while listening to my dad’s LP, A Night at the Opera, but it wasn’t until years later that I became entranced by it, in particular by the one-of-a-kind voice of its lead singer, Freddie Mercury. I believe that it is precisely Mercury’s unmistakable voice that helps Queen’s music create “a kind of magic” for many of us.

A few years ago I heard that a Freddie Mercury biopic was in the

Rami Malek (Freddie Mercury) in Bohemian Rhapsody

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Photos by Alex Bailey

E R U CULT THE

Gwilym Lee (Brian May) and Rami Malek (Freddie Mercury) in Bohemian Rhapsody

stardom and to the 1985 Live Aid concert, we also get to glance behind the scenes, and take a good, candid look at the making of some of the most quintessential songs we’ve ever known, such as “We Are the Champions,” “I’m in Love with My Car,” and “Bohemian Rhapsody.”

Bohemian Rhapsody, the movie, blends real life with a bit of fantasy in the way it brings to life an already familiar portrait of

Freddie Mercury. (There’s at least one deviation from real life, in particular regarding the year when it’s believed that Queen’s frontman was diagnosed with AIDS.) That said, Rami Malek’s performance and remarkable transformation into the iconic Freddie Mercury should be applauded, as should others’ performances, in particular Gwilym Lee’s rendition of a very close-to-real-life young Brian May. Mercury’s sexuality also comes into play

in the movie, and yet, the overall play-it-safe portrayal of Mercury—when it comes to his sexuality, AIDS diagnosis and otherwise— lacks many of the attributes defining the legend we’ve come to love. To reiterate, AIDS is mentioned in the movie, more as a secondary character. Also mentioned is Mercury’s own explanation of his decision to not come out about his HIV status—“I don’t have time to be the AIDS poster boy. I’m gonna be what I was born to be, a performer.” As his fans, I guess we have to respect that.

Overall, Bohemian Rhapsody offers phenomenal music and yet a very shallow depthof-field lens through which we get to look at the music legend, as well as at Queen, the band. The movie leaves us longing for much more, in particular for a kind of depth, a deeper exploration of the story and characters.

Bohemian Rhapsody does end on a high note, though, one that only Freddie’s voice would be able to reach. The intention is, perhaps, to give us hope, because, after all, the Show Must Go On. —Alina Oswald John Francis Leonard writes the Bright Lights, Small City column for A&U. Alina Oswald is Arts Editor of A&U.

A Calendar of Events

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lves do not belong on shelves! They need a bit of exercise and fun. One way to celebrate the season of merriment and raise funds for San Francisco AIDS Foundation’s lifesaving services is to participate in the Santa Skivvies Run, a one-mile jaunt through the Castro in nothing more than your undergear and other festive accoutrements. Par After the run, participants are invited to join the festivities—a lineup of performances, awards, and contests—at Santa’s Village on Noe Street (between Market and Beaver Street between 9 a.m. and noon.

Besides run or wheel or sashay, all participants have to do is raise $150 or more. Supported by Tito’s Handmade Vodka and event partner Lookout, Santa Skivvies Run helps to provide essential services for HIV prevention and care, including programs like the Positive Force seminar, for individuals who are newly diagnosed; the Elizabeth Taylor 50-Plus Network, a support group for long-term survivors; and the TransLife Support Group, which creates a space for health and wellness information-sharing and community building.

Date: December 9; time: 9:30 a.m. (check in), 11 a.m. (Run begins); location: check-in opens outside Lookout, 3600 16th Street, San Francisco, California.

For more information about San Francisco AIDS Foundation, visit: sfaf.org.

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[a portrait by sean black]

Survival Guide

“Everyone should be HIV-positive, not from a blood test but from a perspective, positive about helping to eradicate this virus, positive about making the environment safe for people living with HIV/AIDS to seek treatment and those not living with HIV/AIDS to get tested.”

—Bryan C. Jones Cleveland, Ohio Bryan C. Jones has been thriving with AIDS for thirty-five years and advocating for half that time. He is a Founding Steering committee Memeber of the U=U Campaign and the Founder of the Dirt Advocacy Movement.

Sean Black is a Senior Editor of A&U. 64

A&U • DECEMBER 2018