POZ June 2019

A SMART+STRONG PUBLICATION JUNE 2019 POZ.COM $3.99

H E A L T H ,

L I F E

&

H I V

Poetry in Motion Exploring LGBT and HIV intersectionality

Danez Smith

IMPORTANT FACTS FOR BIKTARVY®

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

(bik-TAR-vee)

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including:

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

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

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

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

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

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

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

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

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

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

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

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

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

HOW TO TAKE BIKTARVY

Tell your healthcare provider about all the medicines you take:

Take BIKTARVY 1 time each day with or without food.

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

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

} BIKTARVY and other medicines may affect each other.

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

Get HIV support by downloading a free app at

MyDailyCharge.com

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

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

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

visit BIKTARVY.com for program information.

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

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KEEP MOTIVATING.

Because HIV doesn’t change who you are.

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

Ask your healthcare provider if BIKTARVY is right for you.

To learn more, visit BIKTARVY.com.

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

PZA510714.pgs 04.26.2019 16:28

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CONTENTS

EXCLUSIVELY ON

POZ.COM #POZ AT 25

SILVER ANNIVERSARY When POZ launched in 1994, effective treatment was still two years away.

Much has changed for the better since then, but as stigma and lack of access to treatment both demonstrate, Y E A R S many challenges still remain for people living with HIV. Go to poz.com/25 for a look back at our coverage over the years, from celebrity profiles to personal stories.

Dee Dee Chamblee is a transgender activist in Atlanta.

D

#UNDETECTABLE SCIENCE, NOT STIGMA

The science is clear: People who have an undetectable viral load can’t transmit HIV sexually. In addition to keeping people healthy, effective HIV treatment also means HIV prevention.

Go to poz.com/undetectable for more.

POZ OPINIONS

COMMENTARY ON HIV/AIDS Advocates, researchers, politicians, thought leaders and folks just like you all have ideas worth sharing. Go to poz.com/ opinions to read about topics such as living with HIV, improving care and treatment, increasing prevention efforts and fighting for social justice.

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

28 THE POWER OF STORYTELLING Exploring intersectionality through poetry. BY DARYL HANNAH 36 WHAT PRICE ACTIVISM? Coping with the fight for change. BY MARK S. KING 4 FROM THE EDITOR True Colors

Leahy talks about what HIV looks like in 2019 versus 1989.

6 POZ Q+A

20 CARE AND TREATMENT

As a new Tales of the City debuts on Netflix, author Armistead Maupin recalls how HIV influenced his life and work.

New cases of HIV cure? • monthly combo injectable treatment • liver cancer risk • high hepatitis C reinfection rate

8 POZ PLANET

25 RESEARCH NOTES

15 EVERYDAY

26 SPOTLIGHT

Milestones in the epidemic

The social media buzz on #UequalsU

17 VOICES

40 HEROES

In “Why Science Shows Us the Best Way to Beat Stigma,” long-term survivor Bob

Dee Dee Chamblee founded LaGender, Inc. to help Atlanta’s transgender community.

And So It Happened • LGBT-themed books for June Pride • AIDSWatch 2019 • Bradley Jones’s life with HIV is a cabaret • POZ at 25: June issues from the archives

Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.

Descovy as PrEP • an injectable treatment that lasts three months • a new test to better measure the viral reservoir • the risk of sudden cardiac death

POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for an 8-issue subscription) by Smart + Strong, 212 West 35th Street, 8th Floor, New York, NY 10001. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 236. POSTMASTER: Send address changes to POZ, 212 West 35th Street, 8th Floor, New York, NY 10001. Copyright © 2019 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® and POZ® are registered trademarks of CDM Publishing, LLC.

COVER: JAMEY GUY; (CHAMBLEE) STEPHANIE ELEY; (MAGNIFYING GLASS) ISTOCK; (SPEECH BUBBLES) THINKSTOCK

D

FROM THE EDITOR

True Colors

4 POZ JUNE 2019 poz.com

EDITOR-IN-CHIEF

ORIOL R. GUTIERREZ JR. MANAGING EDITOR

JENNIFER MORTON DEPUTY EDITOR

TRENT STRAUBE SENIOR EDITOR

KATE FERGUSON-WATSON SCIENCE EDITOR

LIZ HIGHLEYMAN EDITOR-AT-LARGE

BENJAMIN RYAN COPY CHIEF

JOE MEJÍA ASSISTANT EDITOR

ALICIA GREEN ART DIRECTOR

DORIOT KIM ART PRODUCTION MANAGER

MICHAEL HALLIDAY CONTRIBUTING WRITERS

coping with the fight for change.

From gay to straight and transgender to cisgender, HIV advocates are a diverse group.

The virus, however, does have a greater impact on some people. Among them are trans folks.

Dee Dee Chamblee knows this all too well. Go to page 40 to read about her advocacy for trans people, especially trans women of color.

The lives of LGBT people can be challenging, but they can also be joyous and everything in between. After all, LGBTs are human beings, first and foremost. Celebrating our humanity in real life often gets lost in the conversation about our equality, but fictional representations can often do the trick.

Case in point: Tales of the City. Originally serialized in a daily newspaper, the stories became books and TV series. The characters represent all sorts of people—HIV positive, LGBT and otherwise. The author, Armistead Maupin, has revisited the characters as they would be today in a new Netflix series. Go to page 6 for our Q&A with Armistead.

Our special issue on the Undetectable Equals Untransmittable message made an impression. Go to pages 17 and 26 for more.

SHAWN DECKER, OLIVIA G. FORD, AUNDARAY GUESS, CASEY HALTER, DARYL HANNAH, MARK S. KING, ROD MCCULLOM, TIM MURPHY CONTRIBUTING ARTISTS

JOAN LOBIS BROWN, LIZ DEFRAIN, ARI MICHELSON, JONATHAN TIMMES, BILL WADMAN FOUNDER

SEAN STRUB LEGACY ADVISER

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A. CORNELIUS BAKER, GUILLERMO CHACÓN, KATHIE HIERS, TIM HORN, PAUL KAWATA, NAINA KHANNA, DAVID MUNAR, DANIEL TIETZ, MITCHELL WARREN, PHILL WILSON PRESS REQUESTS

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Want to read more from Oriol? Follow him on Twitter @oriolgutierrez and check out blogs.poz.com/oriol.

(GUTIERREZ) JOAN LOBIS BROWN; (ILLUSTRATION) ISTOCK

I

TOLD MY FAMILY I WAS GAY in 1996, which was four years after I tested HIV positive. Effective treatment for the virus also came out in 1996. Perhaps it was that glimmer of hope about HIV that gave me the strength to come out.

As we mark 50 years since the Stonewall uprising, we should acknowledge that much has improved for lesbian, gay, bisexual and transgender (LGBT) people since then. That said, we must also take seriously the many challenges that remain for LGBT people to achieve full equality in the United States.

From the disproportionate HIV rates among LGBT people, especially among young gay and bi men of color and trans women of color, to the violence and discrimination against LGBTs, our collective efforts are urgently needed to fight those who want us back in the closet.

I have high hopes for success in achieving the goal of equality for LGBT people, but there are no guarantees. Steady pressure is essential to secure a future in which sexual orientation and gender identity and expression are just colors in the rainbow of humanity, no more or less beautiful.

In that spirit, exploring LGBT and HIV intersectionality is the theme of this special issue. Our cover subject, renowned poet Danez Smith, has thought deeply about those intersections. Go to page 28 to read how their experience as a queer Black person living with HIV has moved them.

Danez’s poetry is personal, but by exploring their own experiences, the poems reflect realities many of us can recognize. Danez’s self-awareness serves as an example for the rest of us. We could all benefit from more self-awareness. Without it, we run the risk of hurting our physical and mental health.

Even those of us with more self-awareness than the average person—arguably, people such as HIV advocates—can have blind spots. Caught up in their advocacy, they may sometimes forget to administer selfcare. Go to page 36 for more on the price of

Y E A R S

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POZ Q+A

BY TRENT STRAUBE

From top right: Laura Linney and Olympia Dukakis, Ellen Page and Zosia Mamet, and Charlie Barnett and Murray Bartlett in Tales of the City

TALES FOR EVERYONE

28

Barbary Lane has to be one of the most fabled addresses in all of America. Since the 1970s, the San Francisco locale has been home to the beloved characters in Armistead Maupin’s Tales of the City. Originally serialized in a daily newspaper, the stories eventually spanned nine books and several TV series. In June, Netflix returns us to 28 Barbary Lane, for a present-day continuation of Tales, which kicks off with a 90th birthday celebration for Anna Madrigal (Olympia Dukakis), the mother figure to all the residents. “Every letter of LGBTQ is represented in somebody who lives at Barbary Lane,” Maupin tells POZ, noting that the new series is more racially and ethnically diverse. HIV also continues its groundbreaking presence in Tales thanks to long-term survivor Michael Tolliver (Looking’s Murray Bartlett), who is joined by Mary Ann and her ex-husband Brian (Laura Linney and Paul Gross) and their now-grown daughter, Shawna (Ellen Page).

The 2017 memoir Logical Family and the documentary The Untold Tales of Armistead Maupin offer insight on Tales and its author. Maupin, who is HIV negative, has never shied away from the virus. His husband, Christopher Turner, who is nearly 30 years his junior, is living with HIV. Maupin talks about this and more in our Q&A, edited here for clarity and length. You can read a longer version on POZ.com.

How are you and your husband, Chris, doing?

We’re great. More in love than we’ve ever been, after 15 years. His health is good, and, except for some neuropathy in my feet because of diabetes, I’m a happy camper.

I’m very proud of my husband. He did a Facebook post the other day, calling someone to task for asking if he was clean [meaning free of sexually transmitted infections and

6 POZ JUNE 2019 poz.com

HIV]. He got more responses than anything I’ve ever had on my Facebook page because he struck close to what people with HIV still endure. There’s still a lot of work to be done and still the same solution: Tell the truth and get on with life.

You started writing Tales before HIV struck. What was your first encounter with the epidemic, and at what point did you decide to put it in your stories?

My friend Daniel Katz died in St. Vincent’s Hospital in New York, one of the first people who contracted Pneumocystis pneumonia [PCP, a common cause of death before modern treatment]. He was my little brother in my logical family, and we were all traumatized. So I realized I had no choice but to let AIDS be part of the narrative. I was resolved to kill off a popular character in Tales to make other [characters] feel the pinch. And when that happened, there were plenty of gay guys that said, “How dare you spoil our light morning entertainment with your political agenda!” Jon Fielding [a character in Tales] was the first AIDS fatality in

COURTESY OF NETFLIX

As a new Tales of the City debuts on Netflix, Armistead Maupin recalls how HIV influenced his life and work.

fiction anywhere. That was in ’83. A couple of novels came out the next year, but this was the first time that anybody talked about the epidemic.

that era. I try not to be that way myself. I say I don’t want to be the old queen who says, “In my day, we had to walk 10 miles in the snow just to suck a cock.” [Laughs]

When Tales first ended in 1989, Michael was living with HIV. You’ve said you didn’t want to continue the tradition of killing the gay character at the end. You didn’t expect Michael to make it?

You hooked up with Rock Hudson back in the day and caused a controversy when you publicly outed him as gay toward the end of his life, when he had AIDS. Do people still bring that up?

I assumed that everyone who was HIV positive wasn’t going to make it. It was still a death sentence in 1989. And I didn’t want to live through his death.

Fortunately, that bought me time so that I could come back to Michael in Michael Tolliver Lives [the 2007 novel] and talk about what that new life was about.

Oh yeah. And they still get it all wrong.

You have to look at the context of the times when I made the decision to tell [journalist] Randy Shilts that Rock Hudson was gay. We were suffering and thought we needed to out the movie stars at that point, even the very nice ones. As far as Rock was concerned, I knew that he was going to be eaten alive by the tabloid press. Everyone knew he was queer. I

The Netflix series finds Michael doing great. Thank you for putting him in a serodiscordant relationship—when one person has HIV and the other doesn’t—so we can explore that. Plus, he’s got a sexy young boyfriend, Ben. Michael’s so friendly. I was surprised when he says he feels a lot of rage.

Well, he buried it. People with HIV learn to be good little boys about it all and feel like it’s somehow beneath them to express anger that their lives were taken away. Even if they’re living, they were robbed of their carefree lives.

COURTESY OF CHRISTOPHER TURNER

The Netflix series explores intergenerational queer issues. Like the intense scene when a bunch of older gay men basically lecture Ben, saying if it hadn’t been for their sacrifices, he wouldn’t have so much freedom. Meanwhile, Ben is Black and knows all about discrimination. But he’s a bit rude to them too.

Where do you stand on that lecture?

I really give credit to the writing team on that scene. You hurt for Ben, and you hurt for Michael, and you understand the point of [actor] Stephen Spinella [playing an older gay man]. That scene is especially ironic because [Spinella’s character] says, “What makes you think you can understand this? Because you watched Angels in America?” And he was in Angels in America! [Laughs] I don’t admire those [older] guys, but they’re expressing a feeling that many of us of that generation have. Imagine what it was like to live in

Armistead Maupin

Street and the old queen that runs the flower shop would cluck his tongue at me. [Laughs] You’ve said that going to the bathhouses in the 1970s helped you shed your conservatism. How so?

It liberated me. It works that way if you’ve never had sex with anyone until you’re 25 and suddenly you can lie in the arms of another man in a joyful way. The touch of another person can make you heal.

You also quipped that you remained HIV negative in the early epidemic by being boring in bed.

I wasn’t much of a bottom in those days.

[Laughs] I define that as boring now. I think versatility should be the aim if you want to enjoy your sexual experience.

“I had no choice but to let AIDS be part of the narrative.”

put myself out there [to also] say he is a decent guy and this is not going to be a scandal if I can help it.

Will we get more Tales from Netflix?

That’s my hope. It all depends on the algorithms. They can tell within a short time how many people are watching.

Did you hear from him toward the end?

He sent his biographer my way. I was [worried that] he might have misunderstood [my intentions]. He misunderstood so many things. He was a Republican for God’s sake and had Nancy Reagan over to his house. He worked against his better interests all the time. But his biographer said, “Rock said you were the first person to talk to.” That’s when I realized that he got it. And that was wonderful because I was having dreams about him thinking I had somehow betrayed him. It was one of the diciest times in my life. I knew I had done the right thing, but I did not like it when I would walk down Castro

Are you writing more in the series?

I’m working on a book that would return to Mona Ramsey at her manor house in England. She’s such a kick-ass gal.

When Tales debuted on PBS in 1993, it caused a nationwide scandal. Do you think the new Tales will shock people?

I never try to shock. I just try to tell the truth about life. There’ll always be somebody horrified by the natural depiction of queer sexuality. You watch! I think of one of the things Mrs. Madrigal says in one of the recent books: “You don’t have to keep up, dear, you just have to keep open.” ■

poz.com JUNE 2019 POZ 7

POZ PLANET

BY TRENT STRAUBE

BUSTING HIV STIGMA THROUGH STORIES And So It Happened profiles people taking HIV treatment and PrEP.

8 POZ JUNE 2019 poz.com

Omare, 26, undetectable, Poughkeepsie, New York “I believe I contracted the virus in [Washington,] DC, from a man I didn’t know.

We had a quickie that I quite enjoyed. I have been HIV positive now for four years.

My life has changed in many ways, but the most valuable thing I receive is the state and county benefits allocated for HIV-positive individuals. I receive housing assistance, which has prevented me from homelessness and eviction.”

Maria, 50, undetectable, Bronx, New York “My life has changed drastically since my diagnosis [in 1994]. At first, my dad would pull out plastic plates for me and use ammonia every time I used the bathroom. It wasn’t until he saw me almost dying that he accepted me being HIV positive. Now he drinks from my cup [and] hugs and kisses me. My children don’t see me any different; they get on my case if I forget my medications. I’m campaigning for U=U, raising my grandsons and living my life to the fullest.”

(FRANCESCO DI BENEDETTO) COURTESY OF JAY MATTHEWS; (ALL OTHER PORTRAITS) COURTESY OF DI BENEDETTO

Photographer Francesco Di Benedetto’s project And So It Happened includes interviews with and portraits of people living with HIV and on treatment as well as folks who are taking Truvada as PrEP, or pre-exposure prophylaxis, to prevent HIV. The results are at once intimate, inspiring, educational and mesmerizing. They’re posted on his website, fdibenedetto.com, and on Facebook and Instagram under @andsoithappened.theproject.

“I believe that speaking openly about these issues and sharing real-life experiences can help fight the stigma,” Di Benedetto says.

He prefers photographing his subjects at their homes or other locations important to them. The accompanying text is adapted from questionnaires. Since October 2017, about 80 people have posed and told their stories in New York, San Francisco and other cities. Next, Di Benedetto hopes to expand the project to Europe.

Originally from Italy, he moved to New York City in 2012. During a trip to Rome, while telling friends and family about his PrEP regimen, he learned that many people couldn’t access the med and that lots of folks disregard U=U (the fact that undetectable HIV is sexually untransmittable). When a friend with the virus relayed that life with HIV in Italy is still hard, Di Benedetto tells POZ, he realized “living in New York City had put me in sort of a bubble.”

In the spirit of “doing what’s in your power to build a better society,” he launched And So It Happened. The title, he says, “looks at the fact that something happened as a starting point for a broader and more articulate discussion. What happens next?”

For the much more detailed stories of what happened next to the people pictured here, check out Di Benedetto’s project online or visit POZ.com.

Shamôr, 28, on PrEP, Brooklyn “I’m Black, queer and Southern but without the accent. I take PrEP as a precaution. I’ve had partners lie to me, and I wanted to take all measures to have the safest sex possible so that I could make it as enjoyable as possible. I’ve barebacked with someone knowing they’re HIV positive and been super calm because I knew he was undetectable and I’m on PrEP. Taking Truvada daily is a reminder that I’m making less risky sexual decisions these days.”

Rexy, 21, on PrEP, San Francisco “I decided to take PrEP because I wanted to take care of myself and my body. I wanted a little more sense of security on my sexual liberation journey. As a trans femme, [I know that] this world is not the safest, and after having been sexually assaulted, I wanted to protect myself in case an incident like that happens again. Having Truvada as a backup when it comes to sexual encounters with undetectable/positive people really helps.”

Damien, 41, on PrEP, San Francisco Bay Area “As a trans guy, I’m at higher risk for HIV. I’ve been actively exploring my attraction to cisgender men and have found that intercourse with someone wearing a condom starts to chafe and hurt after a couple of days. So with guys I sleep with regularly, I prefer unprotected sex. PrEP makes it possible for me to do that and feel safe about it.”

Derek Du Jour, 26, undetectable, Brooklyn “My dating life has taken quite a blow [because of HIV]. But a majority of guys that hit me up are bi and pansexual.

They’re from a heteronormative society where LGBTQ and sex education are either neglected or extremely out of date. Therefore, a lot of them are scared of me, which hurts sometimes. PrEP has absolutely brought a change!

The number of people scared of me has decreased as well.”

Mark S. King, 57, undetectable, Baltimore “I am a gay man who moved to Los Angeles when I was 20 years old, in 1981. It was the end of the gay sexual revolution, although we didn’t know it at the time, and the dawn of the age of AIDS. Any difficult life event, if you allow it, teaches us compassion and empathy for other people.”

Michael, 54, undetectable, Baltimore “On November 26, 2005, I was the victim of a sexual assault. My HIV infection resulted from that action. Afterward, I lost trust in others and in my own ability to make good decisions. Today, I live fearlessly but with a new understanding of the good and the bad people are capable of. I found the most amazing man, and we were married in 2015.” poz.com JUNE 2019 POZ 9

POZ PLANET

BY TRENT STRAUBE

BOOKS FOR PRIDE LGBT themes abound in these latest offerings.

Before They Left Us

by Rosemary Ann Davis This elegant memoir offers succinct vignettes and impressions, often less than a page each, that add up to a portrait of Davis’s life in pre-AIDS San Francisco, where she befriended many gay men. Only one survived the coming plague. She left for Minneapolis in 1982 but found the virus, and activism, there too. “In the first few years of the epidemic,” she writes, “this is what I learn: the importance of touch. Of laughter. Of time.”

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Visual artist Kaz Senju documents Tokyo’s gay bar scene through photos and interviews. For more details, visit KazSenju.com.

Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community

by Victoria Noe “The story of the AIDS epidemic has largely been told by and about white gay men,” Noe writes, adding that she penned this book “to honor the courageous work of straight women who helped battle this epidemic.”

The result is a collection of inspiring bios and tributes, ranging from superstars to unsung heroes, such as volunteers and caregivers.

Out of the Shadows: Reimagining Gay Men’s Lives

by Walt Odets It’s still not easy to be gay and find true self-acceptance, but clinical psychologist Odets offers insight on gay men’s relationships and the effects of stigma, shame and HIV— notably, how the epidemic has influenced different age groups, including today’s youth, who don’t even associate being gay with having HIV/ AIDS. Nearly 25 stories of gay men, including long-term survivors, flesh out this engrossing and enlightening work.

Illuminations on Market Street

by Benjamin Heim Shepard LGBT folk aren’t the only ones who flee to San Francisco for adventure, sex and self-discovery. In this fictionalized take on the activist author’s life, straight guy Cab Calloway Hardy pens stories and musings while working the night shift at an AIDS residence and hanging with queer and straight friends.

Dense with minutiae, the tales recount growing up in the ’80s and navigating the sexual politics of the ’90s.

(SHINJUKU) COURTESY OF KAZ SENJU; (BEFORE THEY LEFT US) OLD ROAD PUBLISHING; (FAG HAGS, DIVAS AND MOMS) KING COMPANY PUBLISHING; (OUT OF THE SHADOWS) FARRAR, STRAUS AND GIROUX; (ILLUMINATIONS ON MARKET STREET) IBIDEM PRESS

Shinjuku Story Vol. 2

by Kaz Senju The Shinjuku Ni-chome neighborhood in Tokyo boasts nearly 350 gay and lesbian bars packed into a few city blocks—but most are “the size of a walk-in closet and seat only four to 10 people. All of them have bar owners called ‘Momma’ who are the center of the bar,” writes Visual AIDS artist Kaz Senju about his latest photography book documenting this thriving scene.

Images will be displayed at Akta, an LGBT and HIV center in Tokyo.

See them and read related interviews on Instagram @kazviju.

AIDSWATCH 2019

(WHITE HOUSE) TWITTER/@AIDS_UNITED; (TRANS FLAG) INSTAGRAM/@MARIAHIVMEJIA; (JESSE MILAN JR.) TWITTER/@AIDS_UNITED; (ALABAMA) TWITTER/@LANDONLEEN; (BRADLEY JONES) COURTESY OF JEFF HARNAR

Nearly 600 HIV activists gathered in the nation’s capital for the annual AIDSWatch, the largest HIV advocacy event of the year.

Throughout two days, participants networked, attended conferences and panel discussions, and then lobbied their respective congressional representatives “to once and for all commit to ending the HIV epidemic,” said AIDS United president and CEO Jesse Milan Jr. “We have the science and tools to turn this dream into a reality, but it must be met by a strong federal commitment and investment.” One federal health leader— Robert Redfield, MD, the director of the Centers for Disease Control and Prevention—came under fire during his keynote address at AIDSWatch’s opening session. Holding up posters reading “Shame #CDC,” activists called on Redfield to enforce the CDC’s patent rights on Truvada for PrEP, or pre-exposure prophylaxis. Earlier this year, advocates discovered that the CDC owned the patent for PrEP use and could leverage it to lower costs—but has not done Clockwise from top right: so. AIDSWatch, now in its 26th Advocates rally at the White year, is spearheaded by AIDS House; Maria Mejia waves United along with Treatment the transgender flag at the Access Expansion Project and conference; AIDS United’s the US People Living with HIV Jesse Milan Jr. welcomes all; Caucus. The presenting sponand HIV activists meet with sor is The Elizabeth Taylor the staff of Alabama AIDS Foundation.

Senator Doug Jones.

Life (With HIV) Is a Cabaret!

Bradley Jones left home at 18 for the bright lights of Broadway, where he worked nearly 10 years in A Chorus Line before going to school to become a psychoanalyst. In the late ’80s, he contracted HIV. Jones has dealt with lipodystrophy and arteriosclerosis and survived a heart attack; he can relate to clients living with HIV. “Today, I find that most people struggle with HIV stigma,” he tells POZ. “And loneliness remains one of the biggest issues single people with HIV have to come to grips with.” But Jones never lost his love of the spotlight. Hence his memoir musical, Dr. Bradley’s Psychoanalyst Fabulous Functional Narcissism: The Psychoanalytic Odyssey Bradley Jones in a of a Once Glorified Chorus Boy, with runs in New York, Los memoir musical Angeles and Connecticut. It’s one singular sensation! about narcissism

POZ PLANET

BY TRENT STRAUBE

POZ AT 25

3

A look at June issues from the POZ archives

1

2

1994

1999

2004

5

4

2009 1. JUNE/JULY 1994

Cover: Iconic modern dancer and choreographer Bill T. Jones talks frankly about sex, race, dance and AIDS. Inside: Stephen Greco’s detailed remembrance of Rudolf Nureyev, “the Rock Hudson of ballet,” who died the previous year.

Gorgeous black-andwhite photographs accompany the piece.

Plus: surprising praise for People magazine’s AIDS coverage.

2. JUNE 1999

Cover: a report on how advances in prevention science could help revolutionize safe sex and save the next generation of gay men.

Inside: choreographer Muna Tseng’s dance SlutForArt, an homage to her older brother, photographer Tseng Kwong Chi, who died of AIDS-related illness.

Plus: a column on life insurance and viatical settlements for people living with HIV.

2014 3. JUNE 2004

Cover: how ACT UP vet Peter Staley and “two button-down neggies” Dan Carlson and Bruce Kellerhouse got New York City to face its crystal meth problem. Inside: the link between domestic abuse and HIV. Plus: a photo essay on AIDS activists storming Congress to demand funds for ADAP because 1,200 folks were on waiting lists for medications.

4. JUNE 2009

Cover: Fashion designer and chairman of the board of amfAR, The Foundation for AIDS Research Kenneth Cole talks with POZ about raising AIDS “awearness” through marketing campaigns.

Inside: tips on how to take the stress out of moving to a new home—with HIV. Plus: a profile on avid AIDS activist–turned–TV news host Rachel Maddow.

5. JUNE 2014

Cover: For our 20th anniversary, POZ catches up with 20 survivors who appeared on previous covers. Inside: items on the first HIV Is Not a Crime conference, held in Iowa, and Adam Zeboski’s new #TruvadaWhore campaign to reclaim the stigmatizing phrase.

Plus: Peter Staley’s essay “Gay-on-Gay Shaming: The New HIV War.”

Go to POZ.com/25 for more 25th anniversary coverage!

14 POZ JUNE 2019 poz.com

EVERYDAY

BY JENNIFER MORTON

June 3-9 Cyclists ride 545 miles from San Francisco to Los Angeles as part of AIDS/ LIFECYCLE (formerly the California AIDS Ride) to raise funds for HIV/AIDS services at the Los Angeles LGBT Center and San Francisco AIDS Foundation. The first ride took place 25 years ago. (2019)

4

ACT UP demonstrates at the FIFTH INTERNATIONAL CONFERENCE ON AIDS in Montreal and calls for parallel track drug testing in AIDS treatment research. (1989)

(IOWA SUPREME COURT AND PLANE) ISTOCK; (BROADBENT) JACOB- KEPLER

5

HIV LONG-TERM SURVIVORS AWARENESS DAY

THE NATIONAL MINORITY AIDS COUNCIL (NMAC) releases RISE Proud: Combating HIV Among Black Gay and Bisexual Men, an action plan to mitigate the impact of HIV on Black gay and bisexual men.

(2013)

8

NATIONAL CARIBBEAN AMERICAN HIV/AIDS AWARENESS DAY

10

The U.S. Congress enacts THE NATIONAL INSTITUTES OF HEALTH (NIH) REVITALIZATION ACT, which gives the Office of AIDS Research primary oversight of all NIH AIDS research. The act also requires NIH and other research agencies to expand involvement of women and minorities in all research. (1993)

13

The Iowa Supreme Court OVERTURNS THE CONVICTION OF NICK RHOADES, who faced a 25-year prison sentence for not disclosing his HIV status during a sexual encounter with another man during which they used a condom. (2014)

16

The U.S. Centers for Disease Control and Prevention issues the first guidelines for PREVENTING PNEUMOCYSTIS PNEUMONIA (PCP), an AIDS-related opportunistic infection and a major cause of illness and death for people living with AIDS. (1989)

20

AIDS activists demonstrate at the SIXTH INTERNATIONAL CONFERENCE ON AIDS in San Francisco to highlight the demands of the HIV/AIDS community and to protest the new ban on travel to the United States by people with HIV. (1990)

21

The U.S. Food and Drug Administration approves nevirapine, the FIRST NON-NUCLEOSIDE REVERSE TRANSCRIPTASE INHIBITOR. (1996)

14

Activist HYDEIA BROADBENT is born with HIV. She began speaking about living with HIV/ AIDS at age 6.

(1984)

25

DESERT MIGRATION, a film about a group of long-term survivors living in Palm Springs, California, premieres at the Frameline Film Festival in San Francisco. (2015)

AIDS is an everyday experience. These dates represent milestones in the AIDS epidemic. Some dates are known globally; others commemorate individual experiences. AIDS Is Everyday is an ongoing art project produced in conjunction with Visual AIDS to help break down the silence, shame and stigma surrounding HIV. Add a date about your history with HIV to our online calendar at poz.com/aidsiseveryday-submit.

poz.com JUNE 2019 POZ 15

REGISTER TODAY AT WWW.IAS2019.ORG

REGISTRATION / ABSTRACTS / SCHOLARSHIPS EXHIBITIONS / SATELLITE SESSIONS / ACCOMMODATION OPEN NOW - SIGN UP TODAY!

FEATURES THE MOST CRITICAL ADVANCES IN BASIC, CLINICAL AND OPERATIONAL RESEARCH THAT MOVES SCIENCE INTO POLICY AND PRACTICE.

WWW.IAS2019.ORG | TWITTER.COM/IAS_CONFERENCE | #IAS2019

PZA510797.pgs 04.30.2019 12:49

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VOICES BLOGS AND OPINIONS FROM POZ.COM

WHAT WORKS? In a blog post titled “Why Science Shows Us the Best Way to Beat HIV Stigma,” long-term survivor Bob Leahy talks about what HIV looks like in 2019 versus 1989. Below is an edited excerpt.

PREVENTION ACCESS CAMPAIGN

A

sk a group of people living with HIV whether HIV stigma is better or worse than in the old days and mostly you will hear “the same” or even “worse.”

Attempts to move the needle have been fruitless—or that’s the perception.

Whether that perception mirrors reality is moot. The evidence is skimpy.

Thirty years in, we have tools to measure stigma, but data is sparse. We des­ perately need a battle plan, plus good measurement tools and sustained data collection.

So what works? I’ve often argued that the personal testimonies of people living with HIV are hugely important.

They may not change societal views at anything but a snail’s pace, but they can and do change minds one at a time.

Stigma is so pervasive, however, that I’d wager far more people work hard to hide their status than to share it with others. Relying on more people living with HIV to come out—because the challenges to doing so can be extreme— clearly isn’t enough.

I’m not arguing that we should dissuade people from coming out and telling their stories. I’m also not arguing we shouldn’t continue to mount broadly based social media campaigns to attack HIV stigma. Instead, we need to be more effective.

Using a values­based approach is

something we have seldom really tried.

Essentially, this means we shouldn’t blame people for their illness. I like ethics that work.

But with HIV, there is a more impor­ tant factor to contend with. It’s the fear of transmission, a fear that service providers have inadvertently amplified for decades.

That HIV is no longer what it was gives us an opportunity to present a different narrative. True, it involves normalizing HIV in a way that some have resisted, but the public has to know what HIV looks like in 2019, not 1989. There is, of course, a huge difference.

The new face of HIV, although sadly not yet universal, is a healthy face. It’s a face on a body that lives as long as the next person. It’s a face that need not be feared. Why? If we are on successful treatment, we do not transmit the virus to our sexual partners.

These are facts we can prove. This information not only changes our lives but also has the potential to alter our place in society. We are no longer a threat. Voices that share this new reality are our most powerful weapon yet.

In other words, we have entered an era of science­based messaging. The “I Can’t Pass On HIV” campaign from the Terrence Higgins Trust was an early example. The ubiquitous Undetectable

Equals Untransmittable (U=U) message from Prevention Access Campaign is another. The uptake and influence of both messages have been massive, as described in the March 2019 issue of POZ. Importantly, these campaigns address the fear of HIV transmission that has clearly driven stigma. They also speak to the health and well­being of people living with HIV. It’s a winning combina­ tion, and, in 2019, it represents the best path forward to end stigma.

More importantly, instead of throw­ ing anything anti­stigma against the wall and hoping that it sticks, we now have a tool with a much higher chance of success. The U=U message is incredibly powerful. It’s based on science, of course, but science that is simplified. It will take time to convince a hesitant populace that we no longer need be feared.

We must at the same time be sensitive to the fact that—because of treatment access issues or adherence issues or choice—we aren’t all undetectable. It’s no surprise that not all of us are unde­ tectable. The most marginalized face the largest challenges. They need support, not further stigmatization.

That being said, the opportunity to change the face of HIV is out there like never before. Ending HIV stigma is no longer a distant dream. It’s attainable. ■

poz.com JUNE 2019 POZ 17

What is SYMTUZA® Used For? SYMTUZA® is a prescription medicine that is used without other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who: • have not received anti-HIV-1 medicines in the past, or • when their healthcare provider determines that they meet certain requirements.

HIV-1 is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). It is not known if SYMTUZA® is safe and effective in children under 18 years of age.

Take SYMTUZA® exactly as your healthcare provider tells you.

Do not change your dose or stop taking SYMTUZA® without talking to your healthcare provider. If you have difficulty swallowing, the tablet may be split using a tablet-cutter. After splitting the tablet, the entire dose (both halves) should then be taken right away. Do not miss a dose of SYMTUZA®. When your SYMTUZA® supply starts to run low, get more from your healthcare provider or pharmacy. This is very important because the amount of virus in your blood may increase if the medicine is stopped for even a short time. The virus may develop resistance to SYMTUZA® and become harder to treat.

What are the most serious risks with SYMTUZA®?

SYMTUZA® can cause serious side effects including: Worsening of hepatitis B virus (HBV) infection. Your healthcare provider will test you for HBV before starting treatment with SYMTUZA®. If you have HBV infection and take SYMTUZA®, your HBV may get worse (flare-up) if you stop taking SYMTUZA®. If you stop taking SYMTUZA®, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection or give you a medicine to treat your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking SYMTUZA®.

What are the important warnings?

• SYMTUZA® may cause severe liver problems that can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, vomiting, or stomach area pain • SYMTUZA® may cause severe or life-threatening skin reactions or rashes. Stop taking SYMTUZA® and call your healthcare provider right away if you develop any skin changes with the following symptoms: fever, tiredness, muscle or joint pain, blisters or skin lesions, mouth sores or ulcers, and/or red or inflamed eyes, like “pink eye” (conjunctivitis) • SYMTUZA® can cause new or worse kidney problems, including kidney failure What should I tell my healthcare provider?

Before taking SYMTUZA®, tell your healthcare provider about all of your medical conditions, including if you: • have liver problems (including hepatitis B or hepatitis C) • have kidney problems

• are allergic to sulfa (sulfonamide) • have diabetes • have hemophilia

• Are pregnant or plan to become pregnant.

SYMTUZA® should not be used in pregnant women. It is not known if SYMTUZA® will harm your unborn baby

• Are breastfeeding or plan to breastfeed. You should not breastfeed if you have HIV-1 because of the risk of passing HIV to your baby.

Do not breastfeed if you take SYMTUZA®

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with SYMTUZA®. Keep a list of your medicines to show your healthcare provider and pharmacist. Do not start taking a new medicine without telling your healthcare provider.

Who should not take SYMTUZA®?

• Do not take SYMTUZA® with any of the following medicines: alfuzosin, carbamazepine, cisapride, colchicine (if you have liver or kidney problems), dronedarone, elbasvir and grazoprevir, ergot-containing medicines (such as: dihydroergotamine, ergotamine tartrate, methylergonovine), lomitapide, lovastatin or a product that contains lovastatin, lurasidone, oral midazolam (when taken by mouth), phenobarbital, phenytoin, pimozide, ranolazine, rifampin, sildenafil when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin, St. John’s wort (Hypericum perforatum) or a product that contains St. John’s wort, or triazolam • Serious problems can happen if you take any of these medicines with SYMTUZA® What are the possible side effects of SYMTUZA®?

SYMTUZA® may cause serious side effects including: • Immune system changes (Immune Reconstitution Syndrome) can happen in people taking HIV-1 medicines • 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 • Diabetes and high blood sugar • Changes in body fat can happen in people taking HIV-1 medications • Increased bleeding in people with hemophilia, which can happen when taking protease inhibitors.

The most common side effects are: • diarrhea • gas • stomach problems • nausea • rash • headache • fatigue These are not all of the possible side effects of SYMTUZA®. Tell your healthcare provider if you have any side effect that bothers you or that does not go away.

What important facts should I know?

This information is not complete. To get more information: • Talk to your healthcare provider or pharmacist • Visit www.SYMTUZA.com to read over the FDA-approved product labeling and patient information cp-60855v4

© Janssen Therapeutics, Division of Janssen Products, LP 2019 02/19 cp-60837v4

Please read above Important Brief Summary, including important warnings for SYMTUZA®, and discuss any questions you have with your doctor.

You may report side effects to the FDA at 1-800-FDA-1088 or to Janssen Products, LP at 1-800-JANSSEN (1-800-526-7736).

PZA510724.pgs 04.26.2019 16:53

ESA

STAY YOU

BE RESILIENT

Your resilience matters. So does your HIV treatment.

It’s important to take your HIV medication every day, because missing even a few doses may lead to drug resistance and may cause it to stop working.

SYMTUZA® is a treatment with a high barrier to drug resistance to help you keep fighting HIV with just one pill a day.

Ask your doctor about

DON’T RISK RESISTANCE. TAKE THE KNOW YOUR RISK QUIZ—visit SYMTUZA.com/Quiz

PZA510725.pgs 04.26.2019 16:54

ESA

CARE AND TREATMENT

BY BENJAMIN RYAN

MONTHLY INJECTABLE TREATMENT

New Cases of HIV Cure?

Timothy Ray Brown, aka “the Berlin Patient,” may have company now that a second HIV-positive man, dubbed “the London Patient,” has no significant signs of the virus following treatment for cancer that was tailored to give him an HIV-resistant immune system.

Both men received stem cell transplants using immune cells from donors with a rare genetic mutation that causes CD4 cells to lack a functioning CCR5 coreceptor, which most HIV uses to infect a cell. The men also had to undergo highly toxic chemotherapy—and in Brown’s case, whole-body radiation—to condition the body for their transplants, therapy that would be appropriate only for individuals similarly facing potentially fatal cases of cancer.

This means that the opportunity to cure HIV through such a treatment will remain restricted to an extremely small subset of people: those who require a stem cell transplant for the primary purpose of treating cancer.

Both men were cured of their malignancies.

In September 2017, 16 months after his stem cell transplant to treat Hodgkin lymphoma, the London Patient went off his antiretrovirals (ARVs). By the time his case was announced in March 2019, he had maintained an undetectable viral load for 18 months. Should he remain in this state of ARV-free viral remission for two to three years, the lead researcher overseeing his case, Ravindra Gupta, PhD, of University College London, will likely pronounce him cured.

In recent years, some three dozen other HIV-positive individuals with cancer have received stem cell transplants, mostly from donors without the CCR5 mutation.

So far, no one besides Brown has been cured. One who did receive CCR5-mutated cells, known as “the Düsseldorf Patient,” had been off ARVs for four months without viral rebound when researchers first described his case in March.

Steven Deeks, MD, a leading HIV cure researcher and a professor of medicine at the University of California, San Francisco, hails the cases of the London and Düsseldorf patients as important evidence that Brown’s cure was not a one-off.

It looks like CCR5-gene-focused efforts can indeed cure the virus.

“Our capacity to edit genes in people without doing a dangerous transplant is rapidly evolving,” Deeks says. “There are lots of very smart people with huge resources trying to figure out how to edit genes in a safe and scalable way. Should someone figure out this riddle, disrupting CCR5 to cure people might be the easiest way to test the concept. We could have a testable approach in five to 10 years.”

Having such a testable treatment would mark only the beginning of a multistage clinical trials process that could span many more years before a cure therapy makes it to market.

20 POZ JUNE 2019 poz.com

Treating HIV with monthly combination injections of long-acting formulations of ViiV Healthcare’s cabotegravir and Janssen’s rilpivirine (Edurant) suppresses the virus as effectively as a standard daily oral antiretroviral (ARV) regimen, according to a pair of advanced clinical trials. Consequently, the injectable regimen is poised for Food and Drug Administration approval, likely by early 2020.

This would mark the first time an approved HIV regimen does not involve taking daily oral medications. However, the intramuscular injections would require monthly clinic visits.

In one of the two Phase III trials, 616 participants whose HIV was already fully suppressed on daily oral ARVs were randomized to stay on their current regimen or to switch to monthly long-acting cabotegravir and rilpivirine.

In the other trial, following a lead-in period when they all started first-time HIV treatment with oral therapy, 566 participants were randomized to receive either the long-acting injectable regimen or a daily oral regimen.

After one year of treatment, a comparably high proportion of those in the long-acting treatment groups and those in the daily oral ARV groups had a fully suppressed viral load.

Injection-site reactions, which tended to be mild and resolve quickly, were common among those in the long-acting treatment group.

Anthony Mills, MD, chief executive officer of the Men’s Health Foundation in Los Angeles, is encouraged by the very high level of satisfaction reported by those in the long-acting injectable ARV treatment groups.

The two trials, he says, “clearly demonstrate the interest and excitement in the HIV community to support the introduction of a long-acting injectable regimen.”

Liver Cancer Risk Among people with HIV who don’t have advanced fibrosis (scarring) of the liver and thus wouldn’t normally be prone to developing hepatocellular carcinoma (HCC, the most common form of liver cancer), those with a higher and longer-lasting detectable viral load, as well as those with a low CD4 count, are at elevated risk for the serious malignancy.

Researchers studied medical records of HIVpositive veterans, almost all of them men, covering 1999 to 2015. This included about 2,500 people who had advanced liver fibrosis or cirrhosis and nearly 30,000 who lacked fibrosis or had a mild or moderate case.

During the study’s follow-up period, there were 278 diagnoses of HCC. Forty-three percent of these liver cancer cases—a remarkably high proportion— developed in people who did not have advanced fibrosis or cirrhosis.

Liver cancer risk was not tied to viral load or CD4 count in those with advanced fibrosis or cirrhosis. But among those without such severe liver damage, each 10-fold increase in viral load was tied to a 24 percent higher risk of liver cancer. Having a viral load of 500 or above for at least a year was associated with a 57 percent increased risk, and having a CD4 count below 200 was tied to a 58 to 78 percent higher risk of the malignancy.

The study’s lead author, Jessie Torgersen, MD, an infectious disease specialist at the University of Pennsylvania in Philadelphia, said her findings "suggest that achieving and maintaining HIV suppression could mitigate the risk of HCC prior to developing cirrhosis. For patients and providers, this means that effective HIV treatment, in addition to treatment for chronic hepatitis C and hepatitis B, is of paramount importance in reducing the risk of HCC.”

ALL IMAGES: ISTOCK

HIGH HEP C REINFECTION RATE HIV-positive men who have sex with men (MSM) living in New York City who clear hepatitis C virus (HCV), whether spontaneously or with antiviral treatment, are reinfected with hep C at a high rate, most likely through sexual exposure.

Researchers analyzed data from 305 HIV-positive MSM participants in an ongoing New York City cohort study who cleared HCV and were followed for a median of 2.2 years.

Thirty-eight (12 percent) of the men were reinfected. This happened after a median of 1.9 years and up to 11 years after initial viral clearance. This translated to a reinfection rate of 4.4 cases per 100 cumulative years of follow-up— more than seven times greater than the rate of first-time HCV infections among HIV-positive MSM in New York City. Thirty-three of those men’s HCV was cleared, and six of them were reinfected again, for a second reinfection rate of 8.7 per 100 cumulative years.

Daniel S. Fierer, MD, an infectious disease specialist at the Icahn School of Medicine at Mt. Sinai in New York City and the study’s lead author, says many MSM in this cohort “might forget or not really believe that they were infected during sex. So ongoing counseling is important to reinforce the message.”

Introducing the new and improved

POZ.com

WEBSITE FEATURES INCLUDE: • Responsive design optimized for smartphones and tablets • Faster site for quicker load times • Redesigned for easier readability and navigation • Improved search function

RESEARCH NOTES

BY BENJAMIN RYAN

PREVENTION

TREATMENT

CURE

CONCERNS

Gilead Sciences’ Descovy (tenofovir alafenamide/ emtricitabine) will likely be approved for use as preexposure prophylaxis (PrEP) by about early 2020. A Phase III trial compared Descovy with Gilead’s Truvada (tenofovir disoproxil fumarate/emtricitabine), currently the only approved form of PrEP. The trial included nearly 5,400 participants—largely men who have sex with men, plus 74 trans women—at high risk for HIV. One year into the study, the HIV diagnosis rate was comparably low regardless of whether participants were randomized to receive daily Descovy or Truvada as prevention. Descovy contains an updated version of the drug tenofovir that is linked with modest improvements in indicators of bone and kidney health, such as were seen in this study. Whether using Descovy over Truvada will actually prevent bone fractures or kidney disease among HIV-negative people is unknown. Descovy, however, may offer a new option for people at risk for kidney or bone problems.

An investigational capsid inhibitor, GS-6207, has shown early promise as a new long-acting form of HIV treatment to be dosed only every three months. The drug, being developed by Gilead Sciences, proved safe and well tolerated in a Phase I placebo-controlled trial. The ongoing study included 40 HIV-negative participants randomized to receive various doses of GS-6207 in a single subcutaneous injection or a placebo injection. Gilead is also attempting to develop an oral formulation of the antiretroviral. After analyzing the levels of GS-6207 in the blood over time, researchers determined that a dose of 100 milligrams or greater should be sufficient for quarterly dosing. The study has seen no deaths or serious adverse health events. Most side effects were mild and resolved in time. Gilead has already begun a Phase Ib study of GS-6207 in HIV-positive participants.

Researchers have developed a new genetic test that uses polymerase chain reaction (PCR) technology to measure the size of the HIV reservoir—the collection of latently infected cells that are not replicating and thus evade antiretroviral treatment. Typically, the reservoir is measured with a PCR test that indicates the amount of viral DNA inside latently infected CD4 cells. But such a test cannot determine which cells contain HIV that can produce viable new copies of the virus and which ones contain defective virus that poses no threat, the latter of which account for perhaps 98 percent of the HIV reservoir. The new PCR test, which can distinguish between functional and defective viral DNA inside resting cells, is 10 to 100 times more accurate and much faster than a commonly used assay. It will therefore improve scientists’ ability to measure how experimental cure therapies impact the viral reservoir.

Successfully treating HIV may reduce the risk of sudden cardiac death.

Investigators analyzed data from more than 144,000 participants in a long-term study that recruits veterans newly diagnosed with HIV and matches them with HIV-negative vets according to age, year of diagnosis, sex and race. Between 2003 and 2014, a total of 3,036 cohort members experienced sudden cardiac death.

Having HIV was associated with a 15 percent greater risk compared with being HIV negative—an excess risk that increased to 57 percent for those with a low CD4 count and 70 percent for those with an unsuppressed viral load. People with HIV who maintained a fully suppressed viral load or a high CD4 count did not have an increased risk of sudden cardiac death compared with the HIV-negative population. Other risk factors included age, male sex, smoking, having hepatitis C, obesity, alcohol use disorder, anemia, cardiovascular disease and chronic obstructive pulmonary disease.

ALL IMAGES: ISTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)

Descovy PrEP

3-Month Dosing

Reservoir Test

Cardiac Death

poz.com JUNE 2019 POZ 25

SPOTLIGHT

BY JOE MEJÍA

#UequalsU Three years ago, the U=U Consensus Statement announced that people with HIV who maintain an undetectabe viral load cannot sexually transmit the virus to others. Since then, this notion has been established as fact by the scientific community and become a rallying cry for those living with the virus— and with good reason. The fact of U=U motivates people to start and stay on treatment and helps stem the spread of the virus. And, as evidenced by the social media buzz around our recent issue dedicated to U=U, the message can’t seem to be promoted enough.

However, it must be acknowledged that being undetectable remains out of reach for many, including those who don’t know they’re positive and those who can’t access health care. We must not stigmatize those who are not undetectable but rather redouble our efforts to get people tested and secure health care for all. Only this way will we capitalize on U=U’s full potential to change the trajectory of the epidemic.

Posts may be edited for clarity and/or space.

26 POZ JUNE 2019 poz.com

poz.com JUNE 2019 POZ 27

The Power of

Storytelli EXPLORING INTERSECTIONALITY THROUGH POETRY

BY DARYL HANNAH

Danez Smith could be described in several

JAMEY GUY

ways—queer, African American, HIV positive, teacher, nationally renowned poet. These descriptors, while accurate, fail to capture Smith’s complexity.

What’s more, highlighting any of these individual characteristics runs the risk of reconstructing the boxes Smith has spent the past decade breaking down.

Perhaps the only adjective that fully captures Smith, who prefers “they” and “them” pronouns, is expansive.

28 POZ JUNE 2019 poz.com

ing Danez Smith feels at home in their native Minneapolis.

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.

PZA510715.pgs 04.26.2019 16:31

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PZA510716.pgs 04.26.2019 16:33

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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

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Smith’s wide range is on full display as we share a couch in the lobby of New York City’s Ace Hotel on a bright but cold afternoon. It was my first time meeting them in person after spending weeks reading and rereading their latest collection of poetry, Don’t Call Us Dead.

I spent weeks scouring the internet to learn more about the individual whose raw, imaginative poems so clearly capture the pulse of today’s Black queer millennials.

If Kendrick Lamar’s 2018 Pulitzer Prize– winning rap album, DAMN., captured Black people’s anger at a criminal justice system that excuses the seemingly ceaseless killings of unarmed Black men and women at the hands of police nationwide, then Don’t Call Us Dead is its queer poetic equivalent.

From the collection’s opening poem, “summer, somewhere”—an expansive multipage idyll that takes liberties with poetic form—to the much shorter and hopeful closer, “dream where every black person is standing by the ocean,” Smith challenges monolithic representations of Blackness and queerness and confronts the state-sanctioned seizure of Black bodies head-on.

And despite the suggestion of hope in the book’s title, a lot of Smith’s poetry addresses the closeness of death, even spilling the word blood all over the pages of one poem (“litany with blood all over”). However, Smith isn’t concerned only with our mortality but also with the distinct ways in which we die. ...becoming a little moon—brightwarm in me one night. thank god. i can go quietly. the doctor will explain death & i’ll go practice. in the catalogue of ways to kill a black boy, find me buried between the pages stuck together with red stick. ironic, predictable. look at me. i’m not the kind of black man who dies on the news. i’m the kind who grows thinner & thinner & thinner until light outweighs us, & we become it, family gathered around my barely body telling me to go toward myself. (from “it won’t be a bullet”) It’s Smith’s ability to wrestle with the dichotomy between hope and death that has catapulted the young poet to the national stage. Their first collection, [insert] boy, won the Kate Tufts Discovery Award and the Lambda Literary Award for Gay Poetry. Don’t Call Us Dead won the Forward Prize for Best Collection (at 29, Smith is the youngest person to claim the prestigious award) and the Midwest Booksellers Choice Award and was a finalist for the 2017 National Book Award.

Smith is also one of the inaugural recipients of the Four Quartets Prize from the T.S. Eliot Foundation and the Poetry

“IT’S SMITH’S ABILITY TO WRESTLE WITH THE DICHOTOMY BETWEEN HOPE AND DEATH THAT HAS CATAPULTED THE YOUNG POET TO THE NATIONAL STAGE.”

Society of America. Smith’s work has also been featured in such varied outlets as Buzzfeed, The New York Times, PBS NewsHour, Best American Poetry and Poetry magazine and on The Late Show with Stephen Colbert.

In the fairytale version of Smith’s childhood, they are the bibliophile product of a white-bread literary family, inspired to write prophetically from birth. However, this couldn’t be further from the truth. Smith was raised in a very loving household with grandparents and his mom, a devout Baptist.

“I can’t tell you what it was like to grow up another type of person,” says Smith when asked what it was like growing up Black in Minneapolis. “I imagine it was like growing up Black elsewhere. I was never starved for the ‘Black experience.’ I had a very diverse experience and made friends across differences.”

Although Smith was an avid lover of comic books and video games from a young age, they couldn’t read until the third grade. It was then that a teacher pointed out that the video game magazines Smith was often perusing would be more useful if they learned to read.

“I don’t think I was cognizant that I couldn’t read, nor do I think an 8-year-old not being able to read is that remarkable.

Somehow, I did know that I then had access to literacy and was able to do my reading homework.”

Smith first discovered poetry in high school when their theater teacher brought spoken word CDs to class. Soon after, Smith and other students were writing their own poetry and hosting open mic events for other students who wanted to express themselves through spoken word.

Smith’s growing interest in poetry was also fueled by Def Poetry Jam, which aired on HBO in the 2000s. It was while watching Def Poetry Jam that Smith discovered the power and range of poetry through poets including Saul Williams, Patricia Smith, Lemon Andersen and Suheir Hammad.

That influence is also evident in Smith’s own performance

poz.com JUNE 2019 POZ 33

Essex Hemphill (top) style, characterized by intense foand the FX series Pose cus, staccato phrasing and pitch (shown: Mj Rodriguez) inflections to convey emotions. inspire Danez Smith.

Watching Smith’s performance of “dear white america”—a blazing critique of white racists and liberals alike that has garnered 360,000 views on YouTube—one can’t help but hearken back to Nina Simone’s performance of “Mississippi Goddam” in front of tuxedo-clad white patrons.

“I had to stop performing ‘dear white america.’ It takes me to a place that I find hard to come back from. It’s such an intense poem, and white audience members would come to me afterward sobbing, which also wasn’t the goal.”

Decisions such as this have helped safeguard Smith and their family as Smith’s popularity has continued to climb.

Smith also prefers to keep details about their family private, out of respect.

“I engage in a lot of professional work and offer up a lot of myself to folks, so some things I like to keep private. Not out of fear of telling it. But when I’m the one with the platform, I inevitably shape how the story is framed and that may affect people in my life. It’s not just the story of me.”

explicitly about their own experiences as a queer Black person living with HIV. With a tone that is hauntingly familiar, their poetry casually addresses topics like masturbation (more specifically, praise for Vaseline and instructions for men on how to achieve maximum pleasure), down-low parties that aren’t about sex but rather hailing the “faggot queen,” and the trappings of hookup culture, including the familiar phrase “no fats, no fems, no blacks, sorry, just a preference.”

“It’s all part of my experience—apps and participating in hookup culture—that’s why it’s in there. I am telling stories I know how to tell, and that includes telling my own story. It doesn’t feel brave or revelatory, unnatural or derivative for me to write about a Black queer experience. I’m a Black queer person living now.”

However, Smith’s poems about HIV stand out. These poems forgo respectful tones, instead capturing the casual ways in which young Black boys contract HIV, cope with or avoid diagnosis and ultimately live or die. These are the poems that seem the most personal. one day, the boy with a difficult name laid with a boy who shall remain nameless in the sun & they rolled around waiting for something to burn. the next day, the boy with the difficult name woke up in a blue sweat, walked the rim of the lake & though nothing burned, something was growing from ashes, for mosquitos flew away from his skin, ticks latched onto his ankle & turned to

34 POZ JUNE 2019 poz.com

smoke, weeds & willows bowed green spines to him & he swore he heard the dirt singing his name saying it right (from “seroconversion”) “It was something I always feared would happen,” says Smith, referring to learning they had contracted HIV. It was April 2014, and Smith’s partner at the time had tested positive for the virus. This prompted Smith, then just 24 years old, to also get tested. “I felt disappointed at first and maybe later a weird relief because I held that fear for so long. I was scared for my life.”

(HEMPHILL) COURTESY OF EQUALITY FORUM; (RODRIGUEZ) COURTESY OF FX

Smith is, however, comfortable talking openly and

“SMITH IS, HOWEVER, COMFORTABLE TALKING OPENLY AND EXPLICITLY ABOUT THEIR OWN EXPERIENCES AS A QUEER BLACK PERSON LIVING WITH HIV.”

Beyond dealing with the gravity of the news, Smith recalls being terrified of telling their devout-Christian mother and family.

“It had always been a fear of hers as well.

Having a gay child—a Black gay child at that.

She knew the statistics. It was hard seeing her grieve right in front of my face. She switched quickly to emotional support mode, but I definitely had to usher her through this before she could help me.”

But Smith’s newly discovered HIV status wasn’t all doom and gloom. “It gave me a new appreciation for life,” Smith says. “It changed my mortality. I didn’t want to walk around with shame, so I was open about it with friends and family from jump. Writing was a big part in helping me deal with my emotions in those early days.”

They continue: “In a time when I couldn’t talk to many people without having to mediate their emotions as well, writing allowed me the space to be unabashedly sad, to not have all the answers, to imagine myself in the future, imagine myself happy when I wasn’t, to imagine myself through any situation possible. Writing was a big part in how I walked myself through.”

In short, Smith had found their power over the virus through storytelling.

“Telling people helped me through the process. It felt like an act of trying not to give it power before it grabbed hold of me. It felt good to deny stigma. Owning it from such an early stage. Not being public about it would’ve given me more space to revel in shame and woe. I wasn’t out here to be sad. I was willing to wear it on my chest. I still go through shit in private, but it’s all part of my experience.”

Smith’s work often functions as social commentary, employing the poetic form to force introspection. That is the essence of their brilliance.

In their poem “elegy with pixels & cum”—a poem for the deceased adult film actor Javier “Kid Chocolate” Bravo— Smith merges the erotic with the familial, pulling the reader closer while acknowledging the inherent distance.

the bloodprison leads to prison jail doubles as quarantine chest to chest, men are silent you’re under arrest, under a spell are you on treatment? PrEP (wats dat?)

Smith is a founding member of the Dark Noise

did they dress or undress you for burial, kid? your mother watches you choke a man into pleasure, can’t look away, just misses her kid. men gather in front of screens to jerk & mourn, kid. don’t know your real name, kid. you fuck like an animal, you die like an animal, kid. i have the same red shadow running through my veins, kid. in my blood, a little bit of your blood, almost siblings, some bad father’s kids.

Collective, a multiracial, multi-genre collective featuring some of the most exciting, insightful and powerful spoken word artists performing today. Smith is also the cohost—with fellow poet Franny Choi—of VS, a podcast sponsored by the Poetry Foundation and Postloudness. Smith’s third collection, Homie, will be published by Graywolf in the spring of 2020.

So what lies ahead? “I don’t know what’s coming next. I hope to remain open to any experience that comes to me, but I don’t know what’s coming so I’m just along for the ride.”

One thing Smith does know, though, is that they’d like to contribute to the breadth of queer and Black storytelling.

“There aren’t a lot of outlets telling the stories of queer people of color. I used to love anything Patrik-Ian Polk did.

Noah’s Arc was one of my favorite shows. Today, you got Pose, which I also love, and that’s about it.”

When asked what they want for themselves as an artist in the long term, Smith opines on one of the late great queer Black storytellers.

“Essex Hemphill held the story of Black queer people in his hands with attitude. I hope to be more like Essex as I get older. He was a brilliant writer and an attentive editor.”

There’s no doubt Danez Smith is well on their way to becoming both. ■

Their poem “recklessly” is dedicated to Michael Johnson, the former college wrestler who was sentenced to 30 years in prison for “exposing” sexual partners to HIV. The poem’s first five lines set the reader on a course that is both clear and not:

“it won’t be a bullet” and excerpts from “elegy with pixels & cum,” “recklessly” and “seroconversion,” from Don’t Call Us Dead.

Copyright © 2018 by Danez Smith. Used with the permission of Graywolf Press, Minneapolis, Minnesota, www.graywolfpress.org.

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36 POZ JUNE 2019 poz.com

Activism??

COPING WITH THE FIGHT FOR CHANGE

BY MARK S. KING ILLUSTRATIONS BY LIZ DEFRAIN

W

ANDA BRENDLE- MOSS ARRIVED AT the 2018 United States Conference on AIDS (USCA), in Orlando, in a car. She departed soon after in an ambulance.

“I fell in the shower at the hotel one morning,” Wanda explains to me. She has a friendly North Carolina drawl and a sunny face framed by an avalanche of silver hair. Her motherly affections make her a favorite among the many younger advocates on the scene who surround her.

When Wanda hit the floor of the bathtub, she heard a crack. It took her a full 30 minutes, wincing in pain, to crawl out of the bathroom.

She eventually made it downstairs to the conference and tried to keep her physical agony to herself. “I was there on scholarship,” Wanda tells me. She takes such opportunities seriously because her USCA attendance depends on financial support. Wanda doesn’t have money. If a scholarship did not provide meals, she probably wouldn’t eat. But, she says, she would still go.

After someone noticed her distress and questioned her, Wanda consented

poz.com JUNE 2019 POZ 37

to an ambulance, leading to hours in the emergency room and a diagnosis of fractured discs. She longed to return to USCA. By midafternoon, she had made it back, walking slowly down the long hallways to attend workshops, propped up by painkillers and pure grit.

“I know, I know—it sounds crazy,” Wanda responds, when I warn her that her level of commitment might sound extreme when I write about it.

“But I felt compelled to be there. I am doing this work because I need to be.”

Need. Compulsion. I wonder to myself whether these are the healthiest motivations for HIV advocacy. “And,” Wanda adds, with only a hint of defensiveness in her Southern lilt, “I finished that conference.”

There is something familiar about Wanda’s story to this long-term survivor, something about fighting the good fight at any cost, and it strikes a satisfying chord, like a favorite old disco song playing again.

realize. For every extreme example among activists that ends with dehydration and IV drips, there is a case manager slipping his or her own money to a client for bus fare or a volunteer taking vacation days from work to staff yet another resource table. There are late nights and forgotten meals and overlooked family members.

There is Zee Strong, speaking out on social media as a straight man living with HIV, manic from sleep deprivation after weeks working on his Digital Living Quilt project.

There is Thomas Davis before he found a paid position at the Black AIDS Institute, who did it all for free, who valued his volunteer projects more than rent, who once spoke at the National HIV Prevention Conference without mentioning he was sleeping in his car.

And now that satisfying disco tune has begun spinning again, and I understand its meaning. Our instinct to work without guardrails is part of our history, baked into our DNA as activists from the earliest years of the AIDS crisis.

Self-care was a luxury in the 1980s. It often felt like we were all going to die, so we made a karmic deal to fight until that time came. What’s the point of pacing yourself in a world that is ending?

We attended protests in wheelchairs, like Olga. We were taken away by ambulance, like Wanda and Larry. Our very sickness—the body wasting and lesions, the suffering and the mourning—was used as a tool for our activism. We fought until we died and then even beyond, our ashes thrown onto the White House lawn in a final gesture of spite and fury.

We were taught that our survival was linked to our willingness to get empowered and get busy. Many long-term survivors are a testament to that. But the equation isn’t absolute. AIDS has stolen the lives of people who were the very personification of empowerment. The epidemic can be random in its brutality, and that only adds to the guilt of surviving at all.

“ARE WE DOING THIS WORK FOR OUR OWN SURVIVAL?”

L

ARRY FRAMPTON, AN ADVOCATE FROM TENNESSEE, KNEW better than to travel to the 2016 HIV Is Not a Crime conference in Huntsville, Alabama. He was feeling sick and fatigued from working day and night on needle exchange legislation. But he made the trip to Alabama anyway.

When Larry was transported to the emergency room mere hours after arriving, he was unconscious. He didn’t leave the hospital for 10 days.

“I was embarrassed to back out of the conference because I was scheduled to be on a couple of panels,” Larry admits now. “I know that sounds fucked up. That’s where my thought process was at the time. After the dust settled, I thought, God, you were stupid.”

Beware how you judge these activists. They are our community role models. We created this culture and this work ethic. We set the bar and keep lifting it up and up, to a place beyond healthy personal boundaries.

In 2018, as Olga Irwin was returning home from Washington, DC, where she had been protesting changes to the Affordable Care Act, she suffered a stroke. Using her voice as a woman living with HIV had taken precedence over remembering to take her blood pressure medication. Olga’s husband was too concerned for her health to let her watch the protest coverage while in the hospital, but that didn’t keep Olga from tracking developments on her phone and teaching the nurses around her how to organize a perfect demonstration.

Olga returned to DC for another protest three weeks later.

In a wheelchair.

There are more stories like these, more than we might

38 POZ JUNE 2019 poz.com

Y

OU CAN ’ T HELP BUT WONDER WHAT IS DRIVING OUR FRENZIED lives of activism today. Are we doing this work for our own survival? For a piece of glory? Are we seeking forgiveness?

“I feel like, as a newer advocate, I haven’t suffered enough,” Julio Fonseca admits, even though he was diagnosed with AIDS 10 years ago. “I don’t bear the physical battle scars of the early years.” Julio mentors newly diagnosed people at Whitman-Walker Health in Washington, DC, and is a program manager at AIDS United, but it has taken him years to recognize his contributions as worthy.

“In the past,” he says, as his voice lowers, “I sometimes

thought if I pushed myself to the point of illness, it legitimized my contribution somehow.”

It is a troubling admission, but I don’t have to break that news to Julio. He knows. “I had late-stage symptoms when I was diagnosed,” he explains. His initial hospitalization was harrowing. “I don’t think I ever processed it emotionally. I jumped into all kinds of volunteer work without having dealt with the pain of my diagnosis.”

Julio believes that HIV advocacy can become escapist behavior, obscuring unresolved distress. “I think anyone who has tested positive and wants to get into this movement should explore trauma-informed therapy first,” he says. “If you haven’t dealt with your stuff, there’s almost no opportunity for self-care.”

It might also explain why some newly diagnosed people immerse themselves in the HIV arena to an unhealthy degree, racking up multiple obligations and unrealistic expectations.

It’s as if their original trauma keeps trying to express itself by returning to the scene of the crime.

“Overcommitting can be a natural reaction to complex trauma,” Katharine Campbell, PhD, LCSW, tells me. Psychological trauma care is her specialty. “But our reaction to trauma is only negative if it is dysfunctional to us. It could be healthy too. This is not one size fits all. If I am not taking my medications or getting enough sleep, then clearly that is not healthy anymore.”

Working within a movement that lacks strong societal support is also a factor, Campbell believes. “Microaggressions about HIV, those constant demeaning statements and experiences, impact your brain. There’s no way we are not impacted, even if we don’t believe them. You have to figure out how to respond to those messages. For some people, the response is to be hypersensitive and use advocacy to channel their feelings.”

This environment can have an effect on our HIV-negative allies as well, a condition known as vicarious trauma. “You cannot witness a story and not be affected by it,” Campbell cautions. “For instance, before I worked with domestic violence survivors, I never thought twice about people walking too closely behind me. So if I am working as an advocate for long-term survivors and hear those stories or I deliver test results in an HIV clinic, it impacts how I think and react to the world.”

Campbell urges advocates to do the one thing we usually do terribly: take care of ourselves. “As a clinician, I include self-care as part of my ethical mandate,” she says. “Am I taking care of me? Am I modeling what I expect others to do? You might be able to do this on your own, or you might need outside guidance. Self-care doesn’t have to mean going on a vacation. It is different for everyone. Self-care is as complex as human nature.”

T

HE HIV/AIDS EPIDEMIC ISN ’ T SO UNIQUE IN THIS REGARD, despite our tribulations as a community facing a devastating new illness. It’s possible to look toward more mature social and racial justice movements to find wisdom about

how to cope with fighting for change in a largely inhospitable atmosphere.

For Larry, who has stepped away from several of his volunteer commitments since his hospitalization, self-care has meant listening to his body. “I’m more relaxed now,” he says, although he can’t resist taking a victory lap for the very thing that physically clobbered him. “But that needle exchange legislation we were working on in Tennessee?” he mentions proudly. “We got it passed!” There is constant tension in our work between our triumphs and the price we pay for them.

Olga has become more discerning about which events she attends. “There’s a workshop coming up about domestic violence and HIV,” she tells me, the excitement swelling in her voice. “I’ll get to be a presenter for the first time.” There’s another conference only weeks later, but Olga won’t be there. “Before my stroke, I wouldn’t have given it a second thought. I would have done both.

“I wish I had listened more closely to the people around me,” Olga admits, thinking about the ordeal that nearly killed her. “They tried to warn me I was running myself down.”

Olga has not, however, ruled out marching back to Washington, DC, for another round of protests. “If something really scares me,” she says, providing an admittedly low threshold given our current landscape, “then I will go back. Definitely.”

“Is it worth my T cells?” Julio asks. It has become his self-care mantra, demonstrating how far he has come in valuing himself. “I don’t have time for interpersonal bullshit. If you hear somebody say something ignorant about HIV at Starbucks,” he advises, “it’s OK to walk away.

You don’t have to provide a full educational moment. It might not be what you need right now.”

Julio is still learning to heed his own advice. “I feel guilty when I say I can’t do something or when I see a phone number calling and don’t answer because I’m at dinner. I’m still trying.

It’s hard.”

Wanda will be 65 years old this year, and the milestone has her thinking about some changes. “I am pacing myself,” she claims. “Sometimes, less is more.” She doesn’t intend to leave another conference in a vehicle with a blaring siren.

Wanda’s son wants her to move in with his family. He admires her advocacy but wants to keep a closer eye on his mom. Wanda is willing to consider it—but not just yet. She has another timetable in mind.

“After 2020, maybe,” Wanda says. Just the mention of the year makes me shudder with exhaustion. Looming ahead of us are months of grueling politics and intensive organizing and voter drives and protests and town halls, all of it requiring an army of committed volunteers.

It is an irresistible and dangerous brew for any HIV advocate who can’t say no. ■ Mark S. King is a writer and long-term HIV survivor. His blog, My Fabulous Disease, has been nominated for a 2019 GLAAD Media Award. In April, he checked himself out of the hospital— against doctor’s orders—and flew to Minneapolis for an HIVrelated speaking engagement and workshop.

poz.com JUNE 2019 POZ 39

HEROES

BY ALICIA GREEN

Champion of Change

40 POZ JUNE 2019 poz.com

Dee Dee Chamblee fights for transgender people.

STEPHANIE ELEY

Dee Dee Chamblee identified as transgender from an early age, but her family didn’t accept her. So at 15 years old, she turned to sex work to support herself.

In 1987, at age 27, Chamblee tested positive for HIV. “I wasn’t scared,” says the Atlanta native.

“I was just waiting for when my turn was going to come because people were dying.”

Following her diagnosis, Chamblee looked to spirituality for solace, and in 1991, she found a support group that showed her love and acceptance and helped feed her spirit.

“I didn’t get into HIV advocacy until I decided that I was tired of being disrespected as a trans woman,” she explains. “That’s when I really came out, because I was not going to tolerate any more being kicked while I was already down.”

In 2000, Chamblee was receiving treatment at Atlanta’s Grady Memorial Hospital when she was hired as a peer counselor in its infectious disease clinic. But the staff at Grady often misgendered her and refused to call her by her chosen name.

Chamblee took her grievances to a higher-up; soon thereafter, a new policy protecting the rights of trans people was instituted.

Today, Chamblee is the executive director of LaGender, Inc., a group she founded in 2001 to address the unique needs of the Metro Atlanta transgender community, specifically trans women of color. The organization focuses on HIV, homelessness, incarceration and discrimination, among other issues.

“Our population is the most impacted by HIV,” she says, referring to Black trans women. With an infection rate this high, she notes, it’s like the annihilation of an entire community.

LaGender provides services including outreach networking, peer counseling, support groups, leadership development and more.

In 2011, President Obama selected Chamblee as a Champion of Change in honor of the 30th anniversary of the AIDS epidemic.

Chamblee was also the first transgender woman to be inducted into SisterLove’s 2020 Leading Women’s Society in 2012. She was most recently honored with a Positive Leadership Award at AIDSWatch 2019.

She is currently involved with Solutions Not Punishment, a Black- and trans-led coalition she helped launch in 2013 to block an ordinance increasing the criminalization of survival sex workers in Midtown Atlanta and banning those convicted of sex work from the city.

“We were formed out of the Black trans women who were being profiled by the police,” she says regarding the group’s origins.

Chamblee hopes to use her advocacy to address some of the most pressing issues trans people living with HIV must contend with—namely, aging, linkage to care and mental health.

“You just have to get out there,” Chamblee says. “Once you get out there, you will find where you can get support to get where you need to be.”

SURVEY

11

Are you satified with your personal relationships?

❑ Very satisfied ❑ Satisfied ❑ Dissatisfied ❑ Very dissatisfied ❑ Neither satisfied nor dissatisfied

QUALITY OF LIFE Since the advent of effective antiretroviral medication, people living with HIV have been living longer lives. Today’s drugs are easier to take and have fewer side effects, but living with HIV long term can take its toll. POZ wants to know about your quality of life. Please take our survey and let us know how well you are living with HIV. 1

12

❑ Very much ❑ A little 13

14

3

5

Are you satisfied with the quality of your medical care?

How much do you worry about your health?

How much do you worry about your ability to access medical care?

❑ Very much ❑ A little

❑ Very much ❑ A little

❑ A moderate amount ❑ Not at all

How much do you suffer from physical pain?

❑ Very much ❑ A little 4

Are you satisfied with your living conditions?

❑ Very satisfied ❑ Satisfied ❑ Dissatisfied ❑ Very dissatisfied ❑ Neither satisfied nor dissatisfied

❑ Good ❑ Very poor 15

2

❑ A moderate amount ❑ Not at all

❑ Very satisfied ❑ Satisfied ❑ Dissatisfied ❑ Very dissatisfied ❑ Neither satisfied nor dissatisfied

How would you rate your quality of life?

❑ Very good ❑ Poor ❑ Neither good nor poor

How much do you worry about money?

16

❑ A moderate amount ❑ Not at all

❑ A moderate amount ❑ Not at all

How much do you worry about death?

❑ Very much ❑ A little

❑ A moderate amount ❑ Not at all

How much does physical pain prevent you from doing what you want to do?

17

What year were you born? __ __ __ __

❑ Very much ❑ A little

18

What is your gender?

❑ A moderate amount ❑ Not at all

How often do you have feelings of despair, anxiety or depression?

❑ Always

❑ Often

❑ Seldom

❑ Male 19

❑ Female

❑ Transgender

❑ Other

What is your sexual orientation?

❑ Straight ❑ Gay/lesbian ❑ Bisexual ❑ Other

❑ Never

20 What is your ethnicity? (Check all that apply.)

6

❑ Very much ❑ A little 7

❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify): ___________________

How much do you enjoy life?

❑ A moderate amount ❑ Not at all

Do you get tired easily?

❑ Yes ❑ No 8

Do you have any mobility issues?

❑ Yes ❑ No 21 9

Do you have any difficulty sleeping?

ISTOCK

❑ Yes ❑ No 10

What is your annual household income?

❑ Less than $15,000 ❑ $35,000–$49,999 ❑ $75,000–$99,999

❑ $15,000–$34,999 ❑ $50,000–$74,999 ❑ $100,000 or more

Are your sexual needs fulfilled?

❑ Yes ❑ No

22 What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #236, 212 West 35th Street, 8th Floor, New York, NY 10001

Celebrating over 20 years of supporting the HIV community.

For more information about Serostim® and the support services offered, visit www.20PlusYears.com Let’s get social

www.Facebook.com/Serostim

EMD Serono is a subsidiary of Merck KGaA, Darmstadt, Germany. ©2018 EMD Serono, Inc. US/SER/1218/0044 All rights reserved.

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