LONG-TERM SURVIVORS SPEAK OUT BECAUSE YOU’RE MORE THAN YOUR STATUS
THIS OLYMPIAN IS RAISING $1 MILLION FOR HIV
EVERYTHING YOU NEED TO BEAT DRUG RESISTANCE
GUS KENWORTHY: “THE YOUNGER GENERATION WAS SPARED FROM EXPERIENCING A TIME WHEN A DIAGNOSIS MEANT A DEATH SENTENCE, BUT WE STILL HAVE A LONG WAY TO GO.”
PLUS: RAMI MALEK TALKS BRINGING FREDDIE MERCURY TO THE SCREEN MARCH/APRIL 2019 www.hivplusmag.com
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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-
GET MORE INFORMATION
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
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` 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 ASPIRING, 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 ASPIRING. 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.
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IN THIS ISSUE MARCH / APRIL 2019
26
COURTESY CANNONDALE (26); COURTESY DIMITRI MOISE (34); STEVE GRANITZ/WIREIMAGE/GETTY IMAGES (42)
42
34
ON THE COVER
26 MOUNTAIN CLIMBER Out Olympic star Gus Kenworthy is using his platform not only to inspire young queer athletes, but also to break down HIV stigma—one mountain at a time.
FEATURES 22
WE STAND TOGETHER Long-term survivors aren't alone. They're facing the future as a community.
34 SINGING OUT Broadway actor Dimitri Moise is changing what it means to be out, proud, and poz. 38
FIGHTING THE RESISTANCE Drug resistance is growing more common among those living with HIV. Here's what you need to know now.
42 KILLER QUEEN Rami Malek slays as Freddie Mercury, the Queen frontman who died of AIDS complications. On Cover: Gus Kenworthy photographed by Monica Schipper (Getty Images)
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TAKE P r EP TO N"F@ J @J NI PREVENT HIV JK@P@!N CDP PrEP is a safe, daily pill that reduces your risk of HIV infection. PrEP will not interfere with your hormone therapy. Use condoms to protect against other sexually transmitted infections.
PrEP-Plus-1_rip.indd 18708 NYC DOH Prep 1Ready Plus 1.indd 1
PrEP is available regardless of your ability to pay. Talk to your doctor or visit nyc.gov/health and search “PrEP.”
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IN THIS ISSUE MARCH / APRIL 2019
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RICH FURY/GETTY IMAGES (POSE, 8); SHUTTERSTOCK (20); ALEX BAILEY (MALEK 8); ERRICKA JONES (48)
8 BUZZWORTHY 8
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VISUAL AID HIV storylines in films like Bohemian Rhapsody dominated the box office in 2018 and are now winning awards. It's time for more. BY THE NUMBERS 9.4 million people are poz and don't know it.
DAILY DOSE 13
LIMITLESS A life with HIV now comes without restrictions.
TREATMENT 18
RESERVOIR DOGS Not all HIV reservoirs are as bad as they seem.
19
VACCINE OR BUST A new vaccine is in the works, and it might hold the key to a cure.
20 PROCRASTINATION NOW How to stop procrastinating and become proactive about your health.
CHILL 17
PHONE IT IN What Mark S. King learned about gay men while working as a phone sex operator in the '80s helped his HIV activism.
BACKTALK 48 SUPERMODEL There's a million reasons to love poz activist and model Simba Say.
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editor in chief DIANE ANDERSON-MINSHALL • svp, group publisher JOE VALENTINO associate publisher PAIGE POPDAN
creative director RAINE BASCOS associate art director PATRICK MADISON deputy editor JACOB ANDERSON-MINSHALL editor at large TYLER CURRY-MCGRATH senior editor SAVAS ABADSIDIS managing editor DAVID ARTAVIA associate editor DESIRÉE GUERRERO assistant to the editor DONALD PADGETT editorial intern ASHLEY SCHEIBELHUT contributing editors KHAFRE ABIF, GERALD GARTH MARK S. KING, ZACHARY ZANE mental health editor GARY MCCLAIN contributing writer BENJAMIN M. ADAMS creative director, digital media DAVE JOHNSON interactive art director CHRISTOPHER HARRITY online photo and graphics producers MICHAEL LUONG, TEVY KHOU front end developer MAYRA URRUTIA traffic manager KEVIN BISSADA manager, digital media LAURA VILLELA assistant vp, integrated sales STUART BROCKINGTON executive directors, integrated sales ADAM GOLDBERG, EZRA ALVAREZ senior director, ad operations STEWART NACHT manager, ad operations TIFFANY KESDEN senior coordinator MICHAEL TIGHE executive vp, branded partnerships GREG BROSSIA design director, branded partnerships MICHAEL LOMBARDO directors, branded partnership JAMIE TREDWELL associate directors, branded partnerships ERIC JAMES, MICHAEL RIGGIO associate director, branded partnerships and experiential JOHN O’MALLEY manager, branded partnerships CASEY NOBLE editor, social media DANIEL REYNOLDS branded content producer LENNY GERARD branded content writer IAN MARTELLA senior fulfillment manager ARGUS GALINDO operations director KIRK PACHECO office manager HEIDI MEDINA print production director JOHN LEWIS
PRIDE MEDIA chief executive officer NATHAN COYLE chief financial officer JANELLE MITCHELL chief revenue officer ORLANDO REECE corporate executive vice president BERNARD ROOK vice president ERIC BUI human resources ANTIOUSE BOARDRAYE ADVERTISING & SUBSCRIPTIONS Phone (212) 242-8100 • Advertising Fax (212) 242-8338 Subscriptions Fax (212) 242-8338 LOS ANGELES EDITORIAL Phone (310) 806-4288 • Fax (310) 806-4268 • Email editor@HIVPlusMag.com SOUTHWEST EDITORIAL OFFICES Retrograde Communications • Phone (951) 927-8727 Email editor@HIVPlusMag.com FREE BULK SUBSCRIPTIONS FOR YOUR OFFICE OR GROUP Any organization, community-based group, pharmacy, physicians’ office, support group, or other agency can request bulk copies for free distribution at your office, meeting, or facility. To subscribe, visit HIVPlusMag.com/signup. There is a 10-copy minimum. FREE DIGITAL SUBSCRIPTIONS Plus magazine is available free to individual subscribers—a digital copy of each issue can be delivered to the privacy of your computer or reader six times per year. We require only your email address to initiate delivery. You may also share your digital copies with friends. To subscribe, visit HIVPlusMag.com/signup. NEED SUBSCRIPTION HELP? If you have any questions or problems with your bulk or individual magazine delivery, please email our circulation department at Argus.Galindo@pridemedia.com. Plus (ISSN 1522-3086) is published bimonthly by Here Publishing Inc. Plus is a registered trademark of Here Publishing Inc. Entire contents © 2019 by Here Publishing Inc. All rights reserved. Printed in the USA. FOLLOW US ON FACEBOOK AND TWITTER
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LUKE FONTANA (DIANE), TAMARA BECKWITH/N.Y. POST/GETTY IMAGES (EVICTION)
EDITOR’S LETTER
THERE’S A PHOTO above my desk, from 1994, that I’ve carted around for decades now. That year was a turning point for me. Fresh off 12 months of homelessness in San Francisco (at the time, one of the only cities where you could be gainfully employed and still experiencing homelessness), I finally had a roof over my head—a 12-foot trailer with no working toilet or shower (we had to get creative) an hour outside of the city. I received my first Macintosh computer that year, a big box with a little nine-inch screen that I paid for in installments. I toiled away writing essays at night, and by day editing my new lesbian magazine Girlfriends. My days of in-the-street ACT UP and Queer Nation protests were giving way to a busy career as a queer journalist, but even as the AIDS-related deaths around me had begun to slow, my friends were still becoming poz, and the Bay Area Reporter’s famous obits pages were still filled with people I knew (many, like me, still in their 20s). After homelessness, I had also acutely begun to realize how much affordable housing was tied to good physical and mental health, safety, and security. But with the stigma around HIV, those who were poz, in many places, were still being evicted from their homes after their status was discovered. That’s what Tamara Beckwith’s 1994 photo above my desk shows: an eviction notice a tenant coming home to his New York apartment found tacked to his door due to his HIV-positive status. I heard similar stories back in the day, and from some of my friends when their boyfriends or partners died (long before the protections of marriage equality) and the partner’s unaccepting family swooped in and booted them from their own homes. That’s illegal today thanks to the Fair Housing Act, but one Google search and you’ll see that many people with HIV still worry about losing their housing, losing rent control, or being bankrupted by medical costs. In 2015, the AIDS Housing Alliance of San Francisco reported that people with HIV are disproportionately affected by homelessness, with 14 percent of people living with HIV in S.F. being homeless at any given time. I can only assume it’s even worse now. This isn’t meant to be a bummer, and I do have a point. People living with HIV are a resilient bunch. The long-term survivors from this issue’s feature have all lived through the changes between when that poz man came home to an eviction notice in 1994 and now, when hot dudes living with HIV become Instagram influencers. Some of you have been here since the early 1980s, when HIV didn’t even have a name—much less a treatment—to today when it’s a manageable condition. There’s now a pill that prevents contraction. HIV can now be suppressed and untransmittable without condoms, and, whether it does it well or not, the government is mandated to protect your right to work and live and love. There are so many issues those living with HIV for decades face, from drug resistance to survivor’s guilt. Those same men and women who lived through weekly obits filled with friends and lovers were here in the ‘90s when antiretrovirals came out. In 1998, Plus magazine was launched and BAR printed its first zero-obituaries issue. There are loads of issues to unpack, but this year we plan to make long-term survivors an urgent part of every conversation. Tell us your story now and keep reading.
In the 1990s, people could be evicted from their homes for being HIV-positive, as shown in the photo above taken circa 1994 by Tamara Beckwith.
DIANE ANDERSON-MINSHALL EDITOR IN CHIEF EDITOR@HIVPLUSMAG.COM
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BUZZWORTHY
HIV ROCKS THE
BOX OFFICE 2018 brought HIV narratives into the spotlight, winning a few Golden Globes in the process. BY TRACY E. GILCHRIST
Last year could go down as one of the best in terms of LGBTQ representation in film, with close to 40 movies that featured major queer characters or storylines—including Love, Simon and The Favourite. But 2018 also presented numerous stories about HIV (many focused on the height of the epidemic), more so than any year in recent history. When the epidemic began to ravage LGBTQ people, indie films like Parting Glances, Buddies, Tongues Untied, and Longtime Companion were some of the first to
depict stories of resilience amid the devastation. Then Jonathan Demme’s Philadelphia, starring then boynext-door Tom Hanks, brought AIDS to mainstream theaters. Last year marked the 25th anniversary of the release of Philadelphia, and coincidentally or not, it was also the year that several feature films and one landmark TV show tackled HIV narratives after what felt like a relative dearth of content around the subject throughout the past decade. Here’s a look at those stories:
charismatic, queer Queen frontman, is a mega-hit— grossing over $700 million worldwide by the end of 2018 and raking in two Golden Globes: one for Malek as best actor and one for best motion picture in the drama category. Some LGBTQ viewers have taken umbrage at what they see as the demonization of Mercury and his business manager Paul Prenter’s nonmonogamous sexuality. Others disliked how the film chronologically manipulated Mercury’s HIV diagnosis for dramatic effect, repositioning it so that he receives it and informs the other members of Queen prior to their magnificent Live Aid performance in 1985. Still, Bohemian Rhapsody includes an HIV narrative that has put the epidemic on the radars of millions of viewers and will garner an even wider audience after taking home significant awards.
8
ALEX BAILEY/TWENTIETH CENTURY FOX (BOTH)
no denying that the awardBOHEMIAN There’s winning Freddie Mercury biopic Rhapsody, starring RHAPSODY Bohemian Mr. Robot’s Rami Malek as the
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MAPPLETHORPE While the biopic Mapplethorpe, about the acclaimed photographer and button-pusher Robert Mapplethorpe, hits theaters in March of 2019, it made the film festival rounds last year. Matt Smith (The Crown, Dr. Who) stars as the gay lothario whose frank depictions of male genitalia and BDSM were favorite targets of the religious right. Ondi Timoner directs the film that follows Mapplethorpe from his beginnings as an artist and a denizen of the Chelsea Hotel, where he lived with poet, author, and rocker Patti Smith (who wrote the gorgeous memoir Just Kids about their friendship) through to the height of his fame, his relationship with art collector and curator Sam Wagstaff (John Benjamin Hickey), and his death from AIDS complications in 1989 at age 42.
MARY CYBULSKI/ TWENTIETH CENTURY FOX (CAN YOU EVER FORGIVE ME?)
CAN YOU EVER FORGIVE ME? The big-screen adaptation of Lee Israel’s memoir Can You Ever Forgive Me?, Me? chronicles the lesbian writer’s crimes forging letters by prominent (dead) literary figures. Lee and her (eventual) co-conspirator, Jack Hock, meet and form an unlikely friendship in Julius’, Manhattan’s famed gay watering hole. The crimes they deliciously commit, like scamming collectors with phony missives from the likes of Dorothy Parker and Fanny Brice, can’t be extricated from the grimy, HIVdecimated New York of 1990. While the film focuses on their friendship, the specter of the era and HIV runs through it, and eventually it becomes apparent that Jack is suffering from AIDS complications. Richard E. Grant, the marvelous British actor who plays Jack, opposite Melissa McCarthy’s Lee, told The Advocate in 2018 that he based the character in part on his friend, Chariots of Fire actor Ian Charleson, who was gay and died of AIDS complications at the height of the epidemic.
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BUZZWORTHY EVERY ACT OF LIFE Jeff Kaufman directs this documentary about the life and career of playwright Terrence McNally that is absolute catnip to theater devotees. With McNally as the central interview subject, the film charts his beginnings as a gay boy growing up in homophobic Corpus Christi, Texas, to his move to New York City and his increasing success in the theater world amid the LGBTQ civil rights movement and the AIDS epidemic. The film is peppered with archival footage of McNally’s greatest works, such as Master Class and Love, Valour, Compassion, his beautifully incendiary play about a group of gay male friends navigating life at the height of the epidemic. The film also features interviews with acting greats, including F. Murray Abraham, Christine Baranski, Rita Moreno, Nathan Lane, Tyne Daly, Angela Lansbury, and Chita Rivera.
FX’s Pose, from wunderkind producer Ryan Murphy, is nothing short of revelatory, featuring the largest cast of trans performers ever assembled and shedding light on the lives of trans women who shaped the New York City ball culture of the late 1980s. More than any series in history, the show also depicts the minefield that was HIV for trans women as well as gay and bisexual men in the ‘80s. Starring MJ Rodriguez, Indya Moore, Dominique Jackson, Angelica Ross, and Golden Globe-nominated Billy Porter, Pose features several HIV storylines as it brings queer history to generations who weren’t even born until after the height of the epidemic. 10
JACK MITCHELL/GETTY IMAGES (TERRENCE MCNALLY); RICH FURY/GETTY IMAGES (POSE)
POSE
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1985
Director Yen Tan’s emotional family portrait, 1985, shot in elegiac black and white, tells the story of a young gay man, Adrian (Cory Michael Smith), who goes home for the holidays to inform his religious parents (Virginia Madsen and Michael Chiklis) he’s HIV-positive. Jamie Chung costars as Adrian’s spurned ex-girlfriend who ultimately offers friendship and support as he copes with the terror and unknown surrounding an HIV diagnosis in 1985.
HIV AROUND THE WORLD 37 million
75% 52.6% people in the world are living with HIV
DUTCH RALL (SMITH/1985)
9.4 million
of poz folks know their status
are poz and don’t know it
Source: Knowledge Is Power: Know Your Status, Know Your Viral Load by the Joint United Nations Programme on HIV/AIDS (UNAIDS), November 2018.
of poz folks remain detectable (not virally suppressed)
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D A I LY D O S E B Y T Y L E R C U R R Y- M C G R AT H
IT’S TIME TO ADOPT A NEW ATTITUDE HAVING HIV DOESN’T NEED TO GET IN THE WAY OF YOUR DREAMS, INCLUDING BUILDING A FAMILY. apps on your phone, the wardrobe in your closet, or the language you use, everything needs to be upgraded from time to time. The more comfortable we get with certain words and phrases, the more we risk losing the potential for new ones that more accurately reflect what we mean. This has never been truer than when it comes to the phrase “HIV is no longer a death sentence.” As an HIV activist, I hear the phrase echoed almost daily. While it is most definitely true, it falls incredibly short in describing how far we have come with HIV treatment. And frankly, it does an injustice to those living with HIV. My husband and I, both HIV-positive, recently started the process to adopt a child. (Gulp!) We were referred to an adoption agency, which another same-sex couple recommended, and were ecstatic to have an initial conversation with the adoption coordinator. It was a local agency that works with other LGBTQ couples, so we were confident about choosing it to represent us. Unfortunately, it didn’t quite go the way we had hoped. We were off to a great start, at first. My husband and I are great candidates, and the agency was prepping us for the next step. We wanted to be up front about our status in case there were any questions we could clear up ahead of time, as a medical examination is part of the process. Being healthy and fit, we foresaw no issues arising from the pending medical evaluations. All the same, we came out to the coordinator about living with HIV. Then came the pregnant pause (pun intended). “Well, I know HIV is no longer a death sentence,” she finally said. As someone who is used to navigating people’s limited knowledge, I knew then our journey with this agency had come to an end. That was before they decided they would require us to list our status in our adoption profile. For those who might not know much about adoption, this information should only go in the home study—if at all.
SHUTTERSTOCK (BABY); CODY SCOTT KINSFATHER (CURRY-MCGRATH)
WHETHER IT’S THE
As part of the process, your doctor must sign off on your ability to parent the child through adulthood. Given today’s life expectancies for people with HIV, being poz isn’t exclusionary. But, even though there are multiple chronic illnesses many adoptive parents might have, HIV was the one this agency required to be listed. Since they believed doing so would deter birth mothers from choosing us, the agency offered us provisional acceptance so we wouldn’t “waste our money,” in case we didn’t get paired. Luckily for us, I knew better. I know that living with HIV will not only not keep us from adopting, it wouldn’t keep us from being great parents. Nor will it prevent us from shepherding our kid(s) through the challenges of childhood. It also shouldn’t keep us from having a great experience while building our forever family. Indeed, it didn’t take long for us to locate an agency that didn’t even flinch at our statuses. We are happy to report that we have selected an agency and are on our way to becoming parents. Still, the experience had me thinking. When I hear “HIV is no longer a death sentence,” it seems eons away from where we’ve come. To say it’s no longer a death sentence is to say it’s only one step away from it. HIV is now a manageable chronic condition. With treatment, we can live nearly as long and be as healthy as anyone else. And yet we have not upgraded our language and adopted a new phrase that more accurately describes what life with HIV means in 2019. So I humbly propose that we retire the aforementioned phrase and adopt this new one instead: “Life with HIV is now limitless.” As I start to shop for baby clothes and imagine the life I’m still so excited to live, this has never felt more accurate. HIV is a chronic illness, and although the barriers around this disease may be unique, we must shout from the rooftops that you do not have to sacrifice one damn thing because of your status. And if someone disagrees, the only thing you have to limit is your relationship with them. My future is limitless, and so is the future of most people living with HIV. As long as we don’t allow anyone else to tell us otherwise.
Editor at large Tyler CurryMcGrath is also contributing editor at The Advocate magazine and the author of A Peacock Among Pigeons. (@IamTylerCurry)
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YOU MATTER AND SO DOES YOUR HEALTH That’s why starting and staying on HIV-1 treatment is so important. WHAT IS DESCOVYŽ? 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 QH UGZWCN EQPVCEV YKVJ DQF[ ĆƒWKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ ĆƒWKFU QP VJGO
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 YKVJQWV ƂTUV VCNMKPI VQ [QWT JGCNVJECTG RTQXKFGT CU 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 U[UVGO OC[ IGV UVTQPIGT CPF DGIKP VQ ƂIJV KPHGEVKQPU 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-coloredâ€? 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 DESCOVYÂŽ is right for you.
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IMPORTANT FACTS ;OPZ PZ VUS` H IYPLM Z\TTHY` VM PTWVY[HU[ PUMVYTH[PVU HIV\[ DESCOVY HUK KVLZ UV[ YLWSHJL [HSRPUN [V `V\Y OLHS[OJHYL WYV]PKLY HIV\[ `V\Y JVUKP[PVU HUK `V\Y [YLH[TLU[ ÂŽ
KLZ 26/ ]LL MOST IMPORTANT INFORMATION ABOUT DESCOVY
POSSIBLE SIDE EFFECTS OF DESCOVY
+,:*6=@ TH` JH\ZL ZLYPV\Z ZPKL L LJ[Z PUJS\KPUN! â‚” >VYZLUPUN VM OLWH[P[PZ ) /)= PUMLJ[PVU 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 Ă„YZ[ [HSRPUN [V `V\Y OLHS[OJHYL WYV]PKLY HZ [OL` ^PSS ULLK to check your health regularly for several months.
+,:*6=@ JHU JH\ZL ZLYPV\Z ZPKL L LJ[Z PUJS\KPUN! ₔ ;OVZL PU [OL ¸4VZ[ 0TWVY[HU[ 0UMVYTH[PVU (IV\[ DESCOVY� section. ₔ *OHUNLZ PU `V\Y PTT\UL Z`Z[LT ₔ 5L^ VY ^VYZL RPKUL` WYVISLTZ PUJS\KPUN RPKUL` MHPS\YL ₔ ;VV T\JO SHJ[PJ HJPK PU `V\Y ISVVK SHJ[PJ HJPKVZPZ 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. ₔ :L]LYL SP]LY WYVISLTZ ^OPJO PU YHYL JHZLZ JHU SLHK [V death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns `LSSV^ KHYR ¸[LH JVSVYLKš \YPUL SPNO[ JVSVYLK Z[VVSZ loss of appetite for several days or longer, nausea, or stomach-area pain. ;OL TVZ[ JVTTVU ZPKL L LJ[ VM +,:*6=@ is nausea. ;OLZL HYL UV[ HSS [OL WVZZPISL ZPKL L LJ[Z VM +,:*6=@ Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY. @V\Y OLHS[OJHYL WYV]PKLY ^PSS ULLK [V KV [LZ[Z [V TVUP[VY `V\Y OLHS[O ILMVYL HUK K\YPUN [YLH[TLU[ ^P[O +,:*6=@
ABOUT DESCOVY â‚” +,:*6=@ PZ H WYLZJYPW[PVU TLKPJPUL [OH[ PZ \ZLK together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is UV[ for use to help reduce the risk of getting HIV-1 infection. â‚” +,:*6=@ KVLZ UV[ J\YL /0= VY (0+:. Ask your healthcare provider about how to prevent passing HIV-1 to others.
),-69, ;(205. +,:*6=@ ;LSS `V\Y OLHS[OJHYL WYV]PKLY PM `V\! â‚” Have or had any kidney or liver problems, including hepatitis infection. â‚” Have any other medical condition. â‚” Are pregnant or plan to become pregnant. â‚” 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. ;LSS `V\Y OLHS[OJHYL WYV]PKLY HIV\[ HSS [OL TLKPJPULZ `V\ [HRL! â‚” 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. â‚” Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.
.,; 469, 05-694(;065 â‚” This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more. â‚” Go to DESCOVY.com or call 1-800-GILEAD-5 â‚” If you need help paying for your medicine, visit DESCOVY.com for program information.
/6> ;6 ;(2, +,:*6=@ ₔ DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines. ₔ 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 Š 2017 Gilead Sciences, Inc. All rights reserved. DVYC0085 11/17
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CHILL
BY MARK S. KING
CALL ME MAYBE
WHAT 5,000 PHONE SEX CALLS TAUGHT ME ABOUT GAY MEN, DESIRE, AND HIV be a little low. Over the course of my “phone fantasy” career in the 1980s, I spoke to as many as 10 customers in a given day, numbering in the many thousands over the years. That’s a lot of heavy breathing. It began when I was a struggling actor in Los Angeles and needed income. I went to work for a gay phone sex company, the kind that doesn’t really exist anymore, that predated hookup apps and even the internet itself. Customers responded to ads in the gay skin magazines and, for what we would now consider an outrageous fee of $42 per call, received a call back from the man of their dreams. I became everything their suspension of disbelief would allow. As it turns out, I had a way with words. My disembodied voice became so popular that I soon opened my own company, Telerotic, and it would become one of the largest gay phone sex companies in the business. I transformed my soothing tones on the line into whatever man a customer desired when they placed the order. A competitive bodybuilder. A leather daddy. A surfer dude. A retired minor league baseball player who now works as a volunteer firefighter. It gave me enormous insight into the minds and desires of gay men. It provided a window into the lives of men around the country and sometimes the planet, and into sex, intimacy, and the loneliness experienced by gay men decades before marriage equality or Will & Grace would change the landscape. It might be easy to reduce the calls to something frivolous, and often they were. But the need to be treated as a complete human being, capable and worthy of affection and sex that wasn’t perverse or ugly or pathological, was
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THE NUMBER MIGHT
desperately needed, particularly for men who were isolated outside of major metropolitan areas of the country. Trust me, in the early 1980s—and most especially during the dawn of AIDS— sexual fulfillment and genuine self-love were a lot harder to come by. The podcast Sexing History recently invited me to discuss the phone sex industry, intimacy, gay desire, and how HIV and AIDS altered everything. It was the first time in many years that I have spoken about my career a lifetime ago and how it affected me. Beyond the tricks of the trade I shared—the bulging Rolodex of customers and their fantasies, the gay (and sometimes straight) men who called, how my employees and I manipulated the calls themselves—we also discussed what it meant to be gay during this period, and the insight and pure anthropological fascination the calls brought me. That insight would serve me well, when during the height of my company in Los Angeles, the AIDS crisis began. Only after selling the company and going to work for an AIDS organization did I realize how valuable my former career had been. It’s easier to design HIV prevention programs when you have a damn good idea about what motors gay desire. And what is that desire, exactly? Those thousands of calls taught me that gay men have the same human need as everyone else: to be taken care of. Almost without exception, customers wanted men who were “more” than they were in every respect. More muscle, more size (yes, that too), more masculine, and more capable of being in control. Regardless of what their sexual preferences may have been in reality, customers wanted to be carried off and ravaged, perhaps, but ultimately they simply wanted to be cared for by someone with the strength to do it. Some of the men were regular callers, over years, and we talked about life and love and regrets beyond the prime objective of our calls. While my persona was counterfeit, so much of their human need was not. When I sold the company in the late 1980s, saying goodbye to regular customers wasn’t easy. I will never forget the plaintive urgings from some of them, trying to convince me to continue calling them anyway. I had become more than a sexual outlet. I was a lifeline through which they lived vicariously, a gay man in the big city living large with confidence and pride. It was wrenching to say goodbye. Mark S. King is the man behind the award-winning blog My Fabulous Disease where this originally appeared. He’s also the author of the memoir A Place Like This detailing his experiences living in Los Angeles during the dawn of the AIDS epidemic. HIVPLUSMAG.COM
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TREATMENT
RESERVOIR DOGS The scientific community continues to push the limits of what we know about HIV treatment. Each new discovery gives scientists a better understanding of how HIV should be targeted, and recently they found a big piece of the puzzle. HIV reservoirs are one of the main barriers to a cure. The virus can remain dormant in these reservoirs for years, even while a person is on treatment and undetectable. Once someone stops treatment, these cells awaken and start multiplying all over again, allowing viral loads to rebound. Reservoirs have been found throughout the body— including in the brain, lymph nodes, blood, and digestive tract. The most common HIV reservoirs have been found in infected immune system T cells. Scientists have often framed their studies around the idea that microphages, a type of white blood cell in our immune system abundant in the body, can also hold HIV reservoirs and act the same way. But a new study from Johns Hopkins Medicine suggests that’s simply not true. Researchers examined microphages found in the liver and showed that, though HIV can remain in liver immune cells after someone is on treatment, it only does so for a period of time. The scientists found that HIV in liver microphages pretty much die off after a person is on antiretroviral treatment for about a year. Dr. Ashwin Balagopal, the study’s 18
lead author, says his team examined liver microphages because they comprise 80 to 90 percent of all microphages in the body. While microphages are abundant in our bodies, they are difficult to locate because they are buried deep in tissue or organs. Johns Hopkins has been transplanting livers for more than 50 years, and the research team has been able to study livers that would have otherwise been discarded. (Until recently, all organs from HIV-positive people legally had to be discarded rather than transplanted into another person; now other people living with HIV can receive them.) “There has been a number of transplants involving HIV-positive people who have been suppressed for a very long time,” Balagopal says, adding that his team examined liver microphages hoping to find reservoirs, to show that strategies targeting reservoirs in T cells “may be missing an important part of the story.” Instead, the findings, which were published in the October 2018 issue of Journal of Clinical Investigation, showed that the HIV in liver microphages shouldn’t even be classified as an HIV reservoir, given that the virus inside is unable to replicate itself like the virus found inside T cells. “I think it tells us, in terms of a cure, that we don’t need to worry about a
large population of cells that scientists have been worrying about for some time,” Balagopal says, adding, “It’s fair to say that the treatments people currently take probably address the liver microphages just fine.” The discovery will allow researchers to better target efforts for a potential cure (because any cure must find, “wake,” and kill HIV hiding in reservoirs). In fact, Balagopal believes researchers can now confidently focus on a much easier objective. “I think this means we should redouble our efforts to target the known reservoir, which is the T cell reservoir,” he says. “No doubt, without somehow neutralizing that reservoir, we won’t be able to get to a cure.” Balagopal says the discovery should also positively impact current drug trials. “It’s thinking about current therapies that are in trials on the way to cure HIV,” he explains. “There’s been less good news when it comes to the cure, but this could be a silver lining… We went in trying to find reservoirs in microphages, but not having found it, I think it’s reassuring more than it is disheartening.” “We know our immune system is going to be a key partner in getting to a cure,” Balagopal concludes, “and so it’s possible these cells that have inert pieces of virus may have enough pieces of HIV that they misdirect the immune system—so that still needs to be sorted out.” —DAVID ARTAVIA
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Turns out some HIV reservoirs are easier to control than others.
MARCH / APRIL 2019
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PREVENTION
A SHOT IN THE DARK?
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A promising new study renews hope of a one-time single-shot HIV vaccine.
Thirty-eight years ago, when the first cases of HIV started appearing in the United States, no one could have predicted the crisis that would ensue. Since the first wave of the epidemic hit in the 1980s and ‘90s, over 675,000 people have died of AIDS complications in the United States. Medical breakthroughs have given HIV-positive people a new lease on life and for many, suppressed viral loads to such low levels that it’s impossible for those people to transmit the virus. Even though those who are diagnosed now have nearly the same life expectancy as those without HIV, they currently must rely on daily medication taken for the rest of their lives. Moreover, there are still Americans converting to HIV stage 3 (or AIDS). In 2014 alone, over 6,700 deaths were directly attributable to AIDS complications. In 2016, over 18,000 Americans saw their HIV progress to stage 3. All of this had made the hope for an HIV vaccine tantalizing for both scientists and those at risk for HIV. For decades, it was thought an effective vaccine would be developed in just a year or two (reports claimed this as early as the 1980s). Instead, failures have pushed scientists to embrace multi-injection vaccines. Now, a new study has renewed researchers’ optimism about the potential for a single-shot vaccine. Nearly all potential HIV vaccination strategies currently being studied involve a series of shots, required to slowly train the immune system to recognize and attack the virus. That’s been necessary to combat the way HIV hijacks our own T cells and uses them to replicate. The two most significant vaccine clinical trials ongoing in Africa (Imbokodo and Uhambo) employ four and five shots respectively over the course of a year. But now, researchers from the Scripps Research Institute in La Jolla, Calif., have manufactured a single-shot HIV vaccine that could be a game changer. According to findings published in the January issue of Immunity, other vaccines being studied produce normal anti-HIV antibodies that have significant effects on preventing HIV contraction. But what makes Scripps’s vaccine (called the SOSIP BG505 env trimer vaccine) unique is that it induces the body to make bNAbs, antibodies that are normally only seen in people who’ve lived with HIV for many years. This marks the first time scientists have ever induced a mammal other than cows to produce these rare and potent antibodies in response to a vaccine.
The researchers believe this effect means the vaccine will also make a strong and “complete response” to HIV more likely if exposure does occur. In essence, the vaccine would be “sterilizing immunity,” and would be able to not only repel the virus but also contain any infection that occurs, according to NAM’s AIDSmap. The data is based on a proof of concept study vaccinating 78 monkeys and further comparing those with the six highest antibody responses to those with the six lowest responses. It also compared the two responses to those of six other monkeys that were not vaccinated. The vaccine was somewhat effective in the low-response group. Two of the monkeys contracted HIV after a round of six weekly rectal exposures, and the other four after a second round. In contrast, only one of the high-response monkeys contracted HIV after the first round of exposures. One other monkey in that group developed a viral load between the two rounds of exposures, and two more contracted HIV in the second. Still, two monkeys (a third of the high-response group) remained HIV-negative throughout the duration of the study, leaving researchers immensely optimistic. Again, this was just a proof of concept study; researchers will next look at the overall safety and efficacy of the vaccine compared to other options available. But the study is giving scientists confidence that similar vaccines designed to produce broadly neutralizing antibodies could be even more effective for longer periods of time. And it has revived the hope that a one-shot HIV vaccine could still be in the cards. —DA HIVPLUSMAG.COM
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TREATMENT
THE TIME IS NOW BY GARY MCCLAIN
Chad’s doctor gave him what seemed like a reasonable self-care plan to support his HIV-medication regimen. They went through each item on the list, one by one, and Chad (not his real name) left his doctor’s office feeling like the items were all doable. That was yesterday. He agreed to start tomorrow. Now tomorrow is today. The day is almost over and Chad is ashamed of not yet having accomplished one single item on the list. His critical inner voice has berated him over and over. Now, he’s hoping no one will ask him how he is doing, because he doesn’t want to tell the truth and he doesn’t want to lie. 20
Chad is procrastinating. I don’t know anyone, including myself, who hasn’t procrastinated at some point. It’s just human nature. My take on procrastination is that it’s a way of having control in our lives. We don’t like to be told what to do. We don’t want to do things we don’t like to do. And so we maintain control by deciding when we’ll get started on an undesirable task. Unfortunately, as in Chad’s case, when we’ll get started can turn into if we’ll get started. Procrastination is also a way of avoiding failure. If you never get started, you don’t have to worry about experiencing defeat. Chad may have some fears about being capable of making these changes and would rather not put himself to the test. And there’s a third reason for procrastination: Human beings get attached to our day-to-day routines, even if they aren’t working that well for us. We like to stay with what’s familiar. Change means stepping into the unknown.
Chad may fear what his life would be like with his new self-care routine in place, and so may be avoiding the unknown. OK, so what about you? In what areas of your life are you most likely to procrastinate? Is your selfcare plan one of those areas? It’s been my experience that patients who are newly diagnosed often struggle with procrastination. But so do those who are more experienced, maybe as a result of a major change in the requirements around their treatment regimen. Or because they are feeling worn out on their routine. If you are struggling with procrastination, know you are not alone. And you can do something about it. First, don’t use your procrastination as a reason to criticize yourself. Getting down on yourself for not doing what you should doesn’t help anything. It’s like criticizing yourself for being human. Actually, self-criticism
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Are you putting off your self-care plan? Here’s why you’re struggling and how to break the procrastination cycle.
MARCH / APRIL 2019
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can lead to feelings of hopelessness, and questions like, “Why even bother?” That’s never going to motivate you. Instead, focus on the benefit of achieving the goal. Since you left your doctor’s office, you may have lost sight of why you are embarking on this plan. You may tell yourself that this whole thing is about making your life miserable. But your rational mind knows that’s not true. This plan is all about helping you to stay as healthy as possible, to have quality of life, to be there for yourself and for others. That’s a good reason to get going, right? Keep your eyes on the prize. Next, take a look at your perspective. One of the reasons you might be procrastinating on what you need to do to take care of yourself is that you may be lumping all the things you need to do into one giant iceberg. It becomes so big you think trying to chip away at it is simply pointless. Who wouldn’t be inclined to procrastinate with a challenge like that? Break your self-care plan down into smaller, more manageable elements. Shift your perspective away from that big iceberg. Instead, consider the elements that make up your self-care plan. Just as you originally did when you went over it with your doctor. Reaching your goal may include adhering to your medication regimen, maintaining a particular diet, increasing physical activity, or doing selfmonitoring; each of which may be broken into even smaller tasks.
MAXIMILIAN IMAGING
Select the most important priorities. You can ask your doctor to help you prioritize those goals. Is it more important to eat right or exercise? To best take care of yourself, what are the elements of your self-care plan that you need to address every day? What can be done on a weekly basis instead? Your medication regimen is probably at the top of the list. Selfmonitoring may be high too. Be clear with your doctor about what the highest priorities are; don’t make assumptions. Commit to a manageable number of priorities. Then get started. Decide to start today with the basic elements of your plan. Not a complete overnight change in the way you live your life, but the beginning of the adjustments needed to take the best possible care of yourself. Talk to your doctor about a phased-in approach to staying on track with your self-care. What’s the first
step? Take it. This should make your selfcare less daunting. Build in accountability. Being accountable in some way can help us stay on the path. Ask a friend or family member if they can check in with you on your progress or find a partner who will join you in maintaining a diet or exercise routine. There are even apps that can help if you need more accountability. This isn’t about punishing you when you’re not successful but encouraging you to succeed by knowing someone else is rooting for you or counting on you. Watch your labels. Notice I said “not successful” and not “a failure.” Be careful about the words you use to describe your progress in meeting your self-care daily goals. Again, avoid creating reasons to get down on yourself. Give yourself some encouragement. It’s nice to hear positive words from others, but you’ll be that much more successful if you can create your own inner motivation. So create your own positive self-talk and use it often. “Note to self: You’re doing a great job” is a good place to start. Develop a plan for increasing your adherence. Success creates more success. A good way to counter the urge to procrastinate is to work with yourself to continue to master your self-care plan, one more step by one more step. Each time you take a step forward, give yourself some encouragement. Shout it from the rooftop! Think of how you’ll feel even more empowered when you tackle that next task in your plan. Take a step back and reassess. Procrastination might not be the only reason you aren’t successful in reaching your self-care plan. It may be too aggressive, with an unreasonable number of changes expected all at once. You may have aspects of your goals that are just too difficult for you to accomplish. Or goals that just plain don’t fit with the way you live your life. If so, this might be an opportunity to talk to your doctor about adjustments you can make that could help you to be more successful. Learn from those times when you don’t quite get around to it. Not achieving your self-care goals might also be a learning experience. Is there additional support you need? More accountability? Are you trying to accomplish too much? Work with your urge to procrastinate. Don’t blindly fight it. Success is a process, let it unfold.
Gary McClain, MS, PhD, LMHC, is a therapist, patient advocate, blogger, and author, specializing in helping clients and their families deal with the emotional impact of chronic and lifethreatening illnesses. (JustGotDiagnosed.com)
HIVPLUSMAG.COM
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The generation that faced the AIDS epidemic alone is now finding answers to aging with HIV. BY DONALD PADGETT
When Earvin “Magic” Johnson announced his retirement from the NBA in November 1991 after discovering he was HIV-positive, few believed that he would continue “living a long time.” A decade had passed since The New York Times’s infamous 1981 headline “Rare Cancer Seen in 41 Homosexuals” that introduced the HIV epidemic to the American public. Ten years later, the stigma of HIV being a “gay disease” was deeply entrenched, as was the equation of a positive diagnosis with a rapid and withering death (even Johnson called HIV a “deadly disease” at the time).
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He points out that in addition to facing these mental health concerns, long-term survivors are facing issues around aging, compounded by physical ailments brought on by living with HIV (and taking drugs for decades when doctors didn’t know the consequences of doing so). To help get long-term survivors the support they need, Anderson formed Let’s Kick ASS (LetsKickAss. hiv) to raise awareness and find solutions to AIDS Survivor Syndrome. Headquartered in San Francisco, with chapters in Portland, Ore.; Palm Springs, Calif.; and Austin, Texas, the group offers outreach programs for shut-ins and weekly social events to break down the isolation and resulting despair so many survivors face. Eric Jannke of Let’s Kick ASS Palm Springs received an HIV 50+ Strong and Healthy Mini-Grant from the
Helping hands (Above): Desert AIDS Project is one of few organizations seeking to promote the health and wellbeing of longterm survivors COURTESY OF DESERT AIDS PROJECT
The mood in the pressroom and among fans across the country that day was somber. Few believed Johnson would survive, much less thrive physically and personally. But he did. And Johnson isn’t alone. By 1996, a 20-year-old diagnosed with HIV could expect to live another 19 years, thanks to the development of antiretroviral treatments. Five years later, that life expectancy had extended dramatically. By 2001, a 20-year-old diagnosed with HIV could expect to see their 70s. That jump can be attributed to a greater understanding of the virus, powerful new drug cocktails, and changing treatment protocols. Today, the life expectancy of a person with HIV is nearly on par with their HIV-negative peers. But the increase in life expectancy created a unique —and often unexpected—set of needs for long-term survivors. People who didn’t expect to live another 10 years now find themselves three decades later dealing with traditional elderly ailments along with their HIVpositive status. They are discovering that HIV (and drug side effects) can add challenges to confronting memory loss, heart disease, diabetes, and cancer. Their situation is further compounded by the limited research on the impact of HIV (and long-term antiretroviral usage) on the aging body. This is Generation HIV, the first generation to live a lifetime with HIV, something we haven’t seen before. Those who survived the AIDS epidemic also carry the heavy psychological burden of having watched many friends, lovers, and acquaintances perish. Activist Tez Anderson coined the term AIDS Survivor Syndrome in 2012 to explain the wide range of emotional, physical, and age-related ailments that afflict survivors. The concept that this group faces unique health issues is gaining support. Reviewing data collected from over 7,000 individuals since the 1980s (as part of the Multicenter AIDS Cohort Study), HIV researcher Ron Stall, a professor and director of the Center for LGBT Health Research at the University of Pittsburgh, has found that long-term survivors are more likely to experience certain symptoms. In fact, 22 percent reported experiencing three or more of nine conditions—ranging from depression, anxiety, and emotional numbness to nightmares, difficulty sleeping, and despair about the future— from fairly frequently to daily. Isolation and loss were key issues. One out of every four people in the study reported losing more than 10 people close to them due to AIDS complications, and over one-third of survivors said they still grieved those losses. Stall told TheBody.com last year he wasn’t surprised that Anderson’s hunch has proven to be founded, saying “street epidemiology tends to be pretty correct and street wisdom raises questions that are worth looking into very carefully.” Anderson, who says he identified the syndrome to describe his own confounded and befuddled state of mind and affairs dealing with HIV, has his own list of conditions suffered by him and his fellow long-term survivors. That list includes Stall’s nine, and adds others such as substance abuse, sexual risk-taking, cognitive impairment, and suicidal thoughts. MARCH / APRIL 2019
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COURTESY OF BRIDGETTE PICOU0
HIV organization NMAC, which are awarded to raise awareness of issues facing people over 50 who are living with HIV. (Read about the other award recipients on HIVPlusMag.com.) Jannke used the funds to create The Kick ASS Manual, a free reference guide (available at LKAPS.org) on AIDS Survivor Syndrome and aging with HIV. The guide offers personal stories and short but informative essays with the goal of providing a better understanding of of survivors’ experiences. The many challenges facing long-term survivors turn out to be more complex for women, who share men’s difficulties but must also deal with specific mental and physical health issues. In many places, HIV is still thought of as a men’s issue, and this entrenched bias has disadvantaged women with HIV, who often struggle to find competent care. For example, access to specialized care is a concern, as many gynecologists aren’t knowledgeable about the treatment of patients with HIV. Bridgette Picou, a vocational nurse with Desert AIDS Project in Palm Springs, is aware of the challenges facing positive women. A proud mother and grandmother, and an avid hobbyist, Picou is also HIV-positive. In 2012, after she had lost her long-time job and was dealing with a chronic shoulder injury, Picou learned of her HIV status. Once she was without a job, her insurance soon ran out and her CD4 count plummeted. “This was before Obamacare,” Picou tells Plus. “And I was pretty desperate.” She learned of Desert AIDS Project (DesertAIDSProject.org) by word of mouth and it changed her life. She shares her experience of turning her deep despair into a celebration of life in an essay called “You’re Not Going to Die,” in Jannke’s The Kick ASS Manual. “I came to DAP feeling lost and at the end of my rope,” Picou recalls. “I found help here as a patient, which grew into making a home here as a nurse.” Desert AIDS Project seeks to promote the health and well-being of the LGBTQ and HIV communities through its various programs and services. It offers primary and HIV/hepatitis specialty care, as well as behavioral health services, dentistry, and other social programs. There’s a sexual health clinic and a pharmacy prescribing both PEP and PrEP. DAP offers yoga instruction, support groups, sewing circles, and more. “HIV isn’t easy,” says Picou. “It is a frightening, lifechanging diagnosis.” But, through DAP, she was able to learn, “It is not, by any means, the end.” Some of the difficulties facing people with HIV, of course aren’t obvious at diagnosis. It’s often many years later that they’ll realize how aging is impacted by the disease. And many long-term survivors— especially those who never thought they’d live long enough to need plans for senior years—are shocked to realize they now need care that they simply cannot afford. Added to that are the complicated end-of-life decisions that older people face, and many long-term survivors find themselves lacking resources when they need them the most. PALS (Planning Ahead For LGBTQ Seniors) is helping to change that. Years ago, PALS founder Richard Bass saw too many of his friends and associates
pass away with their estates in disarray. Considering that many people living with HIV are estranged from their biological families (who tend to inherit when other plans aren’t in place) a lack of planning can lead to situations where someone who doesn’t know or honor a person’s wishes is entrusted with their estate. Bass recognized the importance of making plans, particularly before sudden adverse health events occur. Bass created PALS to assist LGBTQ seniors in planning for their long-term care by providing the necessary tools, resources, and education they need to do so. Through events, seminars, and informal gatherings, PALS also seeks to create a community of people looking out for each other, to ensure that no one is forgotten or left alone. “Conversations provide options and encouragement to take action,” Bass explains. One of the more challenging offerings of PALS is the Death Café, inspired by the movement started in England in 2010 by the late Jon Underwood. The primary goal of the movement, and PALS’s version of the café, is to demystify death. But while Underwood preferred philosophical discussions about the nature of death, PALS offers gatherings where people plan for their final days. PALS Death Café participants help each other navigate through the maze of legal documents surrounding the end of life as well as managing their own fears of the unknown. “Our discussions model the kinds of topics that attendees must have with their family and friends,” Bass says. “About their hopes and fears for the future, but also legal documents, care options, finances, managing property, legacy, end of life plans.” A good sense of humor helps lighten what could otherwise be a dark discussion, and PALS Death Cafés offer both angel and devil’s food cake at their monthly gatherings. While more awareness must be drawn to the many unmet needs the long-term survivor community still faces, there are growing efforts to address these issues. Rather than wait for others to act, groups and individuals are moving to independently identify concerns and organize relief. In the early days of the AIDS epidemic, when those affected by HIV found few resources to meet their needs (and an intransigent government unwilling to address the crisis), they turned to each other to save themselves. HIV-positive people and LGBTQ activists marched in the streets demanding better drugs and they founded organizations, started clinics, and raised money for research in order to fight the disease. Now some who survived the brutal reality of those days are once again rising to the occasion, creating the solutions they need as they face new challenges, often on their own.
Bridgette Picou is using her life to bring the unique challenges HIVpositive women face to light
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THE NEXT CYCLE OF HIS LIFE MAY BE HIS GREATEST After conquering the slopes, the Olympic Games, and homophobia in sports, skier GUS KENWORTHY is setting his sights on HIV—and pledging to raise a million dollars for the fight.
SEAN DRAKES/GETTY IMAGES
BY SAVAS ABADSIDIS AND DAVID ARTAVIA
Out Olympian and activist Gus Kenworthy documents his trust in the LGBTQ community as he prepares to crowd-surf at the10th annual Miami Beach Pride celebration last spring. This year, the athlete has vowed to raise $1 million to fight HIV.
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sporting world was immediate and positive, and the subsequent years proved to be a groundbreaking time in the athlete’s life. Russia’s antigay stance sparked a dialogue about LGBTQ rights and the safety of being out in sports. The positive response to Kenworthy’s coming out lent credence to the idea that homophobia in the sports world was actually waning. Athletes like Kenworthy, Jason Collins, and Robbie Rogers kept these conversations going all the way to the 2018 Winter Olympics in PyeongChang, South Korea where Kenworthy and figure skating champion Adam Rippon became bona fide gay superheroes for being out, proud, and competing on an international scale. Kenworthy made history at the 2018 games when he locked lips with his boyfriend, Matt Wilkas, on live TV, before completing his qualifying run in the men’s slopestyle. The kiss was lauded as a significant moment in visibility for LGBTQ athletes. Today, Kenworthy continues to share with his 1.7 million social media followers affirming messages about coming out, love, and self-expression. What’s more, he’s now
Above: Kenworthy slaying on the slopes at the 2018 Winter Olympics in PyeongChang, South Korea. Opposite, clockwise from top left: Kenworthy with Charo and Mikey (the dog) onstage at the 8th annual Streamy Awards; dragging it up at Heidi Klum’s Halloween bash last year; and cohosting The Trevor Project’s Trevor LIVE NYC with fellow Olympian Adam Rippon.
TIM CLAYTON/CORBIS VIA GETTY IMAGES
merican freestyle skier Gus Kenworthy had yet to come out when he won his silver medal at the 2014 Winter Olympics in Sochi, Russia. The then-23-year-old athlete was very aware that he was competing in Games colored by Russia’s newly enacted anti-LGBTQ propaganda law that made it virtually illegal for queer people to even express their identities openly. Many LGBTQ athletes, including Kenworthy, chose to keep their protests silent for the sake of competing—and their own personal safety. But a year later, he’d had enough of the closet. Kenworthy came out publicly as gay in a 2015 interview with ESPN the Magazine, becoming the first action-sports star at the Olympic level to do so. Response from the MARCH / APRIL 2019
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KEVIN WINTER/GETTY IMAGES FOR STREAMY AWARDS (CHARO); MONICA SCHIPPER/WIREIMAGE/GETTY IMAGES (HALLOWEEN); DAVE KOTINSKY/GETTY IMAGES FOR THE TREVOR PROJECT (RIPPON)
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COURTESY CANNONDALE (ON BIKE); ANDREAS RENTZ/LIFE BALL 2018/GETTY IMAGES (HERING EXHIBIT)
Above left: Kenworthy straddling a Cannondale bike. The company is proudly sponsoring the 2019 AIDS/ LifeCycle. Above right: Kenworthy at an Keith Haring exhibition that was part of the 2018 Life Ball, in Vienna, Austria. The annual charity event raises money for HIV & AIDS.
using his fame to combat HIV and the stigma that remains around the virus. Part of the reason why young people (ages 13 to 24) make up nearly a quarter of all new HIV diagnoses, Kenworthy says, is because “there is a lack of education and stigma that still exists around HIV.” To help change that, Kenworthy recently announced his planned participation in AIDS/ LifeCycle 2019, pledging to raise $1 million to fight HIV. This June 2–9, the Olympian will join over 2,000 cyclists on a seven-day, 545mile trip from San Francisco to Los Angeles. He’ll be cycling at a time when most (81 percent) of the youth newly diagnosed with HIV are gay and bisexual. “I think the younger generation was spared from experiencing a time when a diagnosis meant a death sentence, but we still have a long way to go,” he says. “We need to continue to speak up for the cause and teach young people how to protect themselves—that’s part of the reason I am doing the AIDS/LifeCycle ride.” Tracy Evans, ride director for AIDS/ LifeCycle, couldn’t be more thrilled to have Kenworthy involved this year. “We’re elated about Gus participating in the ride this year,” says Evans. “He has set an incredible goal of raising $1 million, and if he achieves this landmark goal, he’ll be the first person in the ride’s history to do it.” Evans is optimistic that Kenworthy can not only reach that goal but help educate youth
about the risks—and resources—around HIV. The ride’s beneficiaries, the Los Angeles LGBT Center and San Francisco AIDS Foundation both provide health care, testing, and social programming for those who are at greater risk of contracting HIV, Evans says, adding, “Together, we can end AIDS.” “As a longtime endurance cyclist and a member of the LGBT community, I’m thrilled to be able to give back to my community in such a meaningful way and to honor my friends and colleagues who are no longer with us,” Evans, who’s been ride director for the past two years, says. “Plus, I want to be part of the journey to getting down to zero: zero new infections, zero deaths, and zero stigma.” The ride is always a sentimental moment for Evans. “Throughout the year, I get to know so many people, and to cheer them across the finish line—knowing how much hard work and dedication they invested to get there—is beyond satisfying. It’s wonderful to witness people achieve incredible things: They raise insane amounts of money benefiting two worthy organizations, they cycle 545 miles, they take a week of vacation to volunteer for a seven-day event. They truly are heroes.” Now Evans is looking forward to cheering on Kenworthy, who will also have the support of Cannondale, the ride’s official bike sponsor since 2003. “Our relationship with the company has deepened into something beyond HIVPLUSMAG.COM
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Opposite: Kenworthy and boyfriend Matthew Wilkas attend US Weekly’s Most Stylish New Yorkers event in September 2018.
a significant impact and help reiterate the importance and continued relevance of the ride—and the lifesaving work it funds. When the famous skier made his groundbreaking pledge to raise more money than any single participant has ever raised, he says he “did so with the thought that if each of my social media followers donated $1, then we would easily meet that goal.” “With a large audience, I have an opportunity to make a big impact and help a lot of people living with HIV today. Some of my sponsors through skiing and the Olympics have also kindly pledged to donate and host events to support the cause.” For example, Samsung has already donated $25,000 to Kenworthy’s campaign, a great sign of the donations yet to come as he cycles toward the finish line—and the end of AIDS.
SANTIAGO FELIPE/GETTY IMAGES (DRAG RACE); ANDREAS RENTZ/LIFE BALL 2018/GETTY IMAGES (GROUP)
Top right: Kenworthy couldn’t resist a photo op with the gorgeous queens of RuPaul’s Drag Race season 10. Bottom right: Kenworthy and Wilkas (center) attend the 25th annual Life Ball in Vienna, Austria.
sponsorship,” Evans says. “They provide a team of mechanics along the route who will work night and day to get everyone’s bike up and running again, ensuring that no one misses a mile of the ride because of a mechanical issue. Throughout the year, Cannondale generously supports our cyclists through demos and bike giveaways. We are proud and honored to have Cannondale as our friend.” Kenworthy mirrors Evans’s respect for Cannondale, which built two custom Synapses painted with the LGBTQ flag, one of which Kenworthy will be riding for the duration of the bikeathon. Its twin will be auctioned off, with all proceeds going to AIDS/LifeCycle. Kenworthy’s prominence in athletics and in the LGBTQ community (not to mention his huge social media following) means that his participation in AIDS/LifeCycle will have
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Singing B y Diane A nderson- Minshall
Lives
with
His
Words
Family is everything to Dimitri Joseph Moise, a New York-based multihyphenate entertainer who can be seen on season 1 of TBS’s The Last O.G. and on the national tour of the Broadway smash hit, Beautiful: The Carole King Musical. The actor, dancer, singer, producer, and magazine editor made his Broadway debut in The Book of Mormon mere hours after his college graduation. Moise says booking that show was the turning point for his parents because “while they always believed in me… they were like, ‘What are you doing? You’re going to be a singer-actor? What are you talking about? That’s not a job!’ To have that experience of them watching me graduate during the day… [and then] watch me and my debut in this hit show on Broadway. They were really proud to see that, Oh, he can really do this.” Moise says he “feels like I’m at home when I’m onstage,” but it wasn’t a given that the first-generation American would become an actor. Both of his parents came to America from Haiti, though they first met in the U.S. in the late 1980s. At the time, extreme racism and homophobia were aimed at Haitian immigrants, after media coverage erroneously branded the entire nationality a high-risk group for HIV. That bias against HaitianAmericans is still strongly held in some parts of the nation. In 2017, an article in The New York Times reported on a White House meeting in which President Trump, angry that 15,000 Haitian immigrants had been allowed into the U.S., allegedly said they “all have AIDS.” The current anti-immigrant political environment can be tough, Moise says, but his parents have always made sure he was proud of his heritage— and proud of being an American. “As a son of Haitian immigrants, it’s meant a lot to me to be a firstgeneration American,” he says. “I’ve realized there aren’t that many of myself in the circles that I’m in.” At the schools he attended, Moise explains, “I was usually one of the few black students and so my parents always reminded me, ‘You are a Haitian-American person. Don’t let anyone tell you otherwise. Don’t let anyone try to steer you away from who you are.’” After he was accepted into an elite, all-boys high school in New York, Moise recalls, “my dad and my mom sat me down and they were like, ‘As a black person in America, you need to acknowledge that when you walk into that school, your teachers, your peers, are not going to think that you’ll do as well as them. They’re going to expect you to fail out, so you need to be 10 times better than everyone [else].’” Until very late in high school, the future Broadway star thought he was going to be a surgeon. His father is a nuclear medical technician in cardiology, and Moise was planning to follow in his footsteps.
A ctor Dimitri Moise comes out as H IV - p ositive to j oin the fight against HIV in the black community, proving being poz doesn’t have to derail your dreams.
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COURTESY DIMITRI MOISE
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COURTESY DIMITRI MOISE
This first generation Haitian-American performer is taking a stand against HIV stigma.
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“Ever since I was a kid, I wanted to be a doctor,” he admits. His dream was to be a reconstructive surgeon who also did pro bono work for those who actually needed it, like babies with cleft lips. Moise was on that track until he stumbled into theater. “I had a knack for singing and so my mom told me to audition for the glee club,” he remembers. He made the cut for the all-boys chorus and also made a lot of friends from the drama club, who invited him to see their production of Godspell. “I was beside myself seeing my friends getting to live these incredible lives onstage. I thought, That looks really cool and maybe I would want to try that.” After additional encouragement from the drama director, Moise auditioned and ended up getting the lead in his school’s next musical. That one part led to many more, which led to him sending in nine college applications for pre-med and nine for theater. Every theater school accepted him. “I thought, OK, well, maybe I should follow this,” he says, laughing. “Then from there it just—life never really stopped.” But something did stop him. Last year, he got sick. Nothing really bad, just a sinus infection that wouldn’t go away. But when you’re up onstage twice a night, six days a week, and traveling to a new city (or new country) on that single “off” day, an actor doesn’t have time to waste worrying about lingering sniffles. Back at home in New York, Moise was “in and out of the urgent care for two weeks. Nothing they were giving me was working and they didn’t know what was going on.” On one visit, he figured he might as well get his usual HIV test out of the way, just to save a visit to the clinic. He’d had lots of tests, all negative. He’d expected this one to be too. Then he was left waiting in an exam room for 30 minutes before he heard someone in the hall say, “Are you going to tell him or should I?” A doctor came in moments later and revealed the results. “He tells me, ‘You’re HIV-positive,’” Moise recalls. Moise acknowledges being initially overwhelmed by emotion at the diagnosis. But not long after, he realized he was “lucky that I’m living in a time where my life is so different than what it could have been.” Only a month into treatment, Moise learned his viral load was suppressed to undetectable levels. He’s part of a new generation living with HIV, those who’ve known from the beginning that undetectable means untransmittable. “I realized I would thrive the day I became undetectable,” he explains. “I don’t have to be scared anymore. I’m undetectable, which means I cannot transmit the virus. So I can live a happy life.” The Broadway actor has plenty on his mind besides HIV. Even while nonstop touring, Moise is always looking for the next horizon, how he’ll make his parents proud, and make his dreams come true. He’s juggling performing with philanthropy and activism, volunteering with groups like Broadway Serves and cofounding TORCH (TorchUnites.com), an organization dedicated to uniting marginalized communities through arts entrepreneurship. And television beckons. Last year, he had a small role as Mostel Defferies on The Last O.G., the TBS comedy co-created by Jordan Peele and starring Tracy Morgan and Tiffany Haddish.
Dimitri Moise realized he was “lucky that I’m living in a time where my life is so different than what it could have been.”
“It was a really incredible experience getting to work with such big names,” Moise says. “It was my first TV experience and it’s very different from performing onstage.” Moise can juggle a lot. The multitasker is also balancing his performances with serving as managing editor of Chill, a magazine for young men of color, which he views as another chance to help others see themselves in an empowering way. [Full disclosure: Chill is a sister publication of Plus magazine.] Moise hopes to turn his diagnosis into something positive too (pun partially intended). “The day I was diagnosed… I was like, Why me? But then… I thought, I’m going to do something about this. I want to be able to turn my negative experience into something positive that can better myself, and hopefully better other people, especially people of color. We’re faced with so much—and we don’t talk about mental health. We don’t talk about STIs. We don’t talk about HIV, and it’s so prevalent in our community. And if we’d talk about it, if we acknowledge that these things exist, that we’re susceptible, maybe we can do better at making sure it doesn’t continue being so rampant in spaces of color. And if I can be a person that helps lead that charge, that helps continue that charge, that helps that kind of work exist in the world, then I want to do that.” Moise came out about being poz in Plus magazine’s “I Am the First” video series. After all, in his family he’s had many firsts—first-generation American, first family member to go to American college, the first to perform on Broadway, the first to edit a magazine, and yes, now the first to live with HIV. HIVPLUSMAG.COM
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YOU CAN BEAT RESISTANCE
Drug-resistant strains of HIV are becoming more common. Here’s the 411 on what you need to know to suppress the viral uprising. BY JACOB ANDERSON-MINSHALL
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The word “resistance” might conjure up images of protesters, government workers, or throngs of early voters. But HIVpositive people know all too well the fallout of a different kind of resistance: antiretroviral drug resistance. Thankfully, the majority of those living with HIV will likely never face antiretroviral drug resistance. Although the risk of developing resistance increases over time, modern antiretroviral drugs are less vulnerable and have higher adherence rates—two factors that decrease the risks. Still, we can’t ignore the fact that there’s been a globally documented expansion of HIV drug resistance, which the World Health Organization says has the potential to fuel an increase in new HIV diagnoses and deaths. So what is antiretroviral drug resistance and how can you fight it?
What Is Drug Resistance?
Drug resistance occurs when a disease develops a defense to the mode of attack that a medication is using to fight it. Imagine if you protect your house with a security system and then burglars learn how to hack into it. That’s resistance. All organisms are constantly evolving to deal with the stressors in their environment, and viruses can change at a disturbingly rapid pace. HIV can create billions of copies of itself in a single day. In all of that replication, mistakes are occasionally made and passed along. Some of those mistakes create mutations that are helpful to the virus. Those versions become more common if they survive the medications you are taking. As more of the mutated strain replicates, it passes on its drug resistance. If another error makes it even more resistant to that drug, the level of resistance continues to build. Eventually, the medication stops working.
How Common Is Drug Resistance?
Unfortunately, that’s a hard question to answer. A 2017 WHO report noted that, in some poor and under-resourced countries, nearly one in 10 people starting treatment are doing so while already showing resistance to one of two commonly prescribed first-line HIV drugs (efavirenz or nevirapine). Those rates don’t account for those newly diagnosed who show resistance to other HIV drugs, nor do they include those who’ve developed resistance to HIV drugs after starting treatment. A 2016 meta-analysis published in the journal Infection, Genetics and Evolution reported transmitted drug resistance may be as high as 12 to 24 percent of new diagnoses in the U.S. But the International Antiviral Society–USA’s 2018 Updated HIV Drug Resistance Guidelines reports that “in resource-rich regions, the prevalence of transmitted drug resistance is about 10 percent.” The U.S. (as a whole) is considered “resource-rich,” so this lower number may apply. But both of these reports only address the kind of drug resistance that is transmitted with the HIV strain—rather than including those that develop while someone is on treatment.
Symptoms of Resistance
So how do you know if you have a drug-resistant strain of HIV? The only reliable method is testing. When you are first diagnosed with HIV, your doctor should check which strain you have since some strains are resistant to different drugs. This genotypic-resistance testing should especially look for mutations impacting reverse transcriptase and protease inhibitors. 40
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When Should I Be Tested?
If you’ve been off treatment for a while, if your viral load increases while you are on treatment (even if you remain undetectable), or if you are planning to switch medications, you should be tested for resistance. In addition, the National Institutes of Health also recommends drug-resistance testing for all pregnant women living with HIV, whether they are on medication or not, because drug-resistant strains can be perinatally transmitted to a child.
Preventing Resistance
The risk of resistance increases when drug levels drop below a certain active level. This usually only occurs if you miss doses or stop treatment. Any interruption to your treatment plan can have long-term impacts, and WHO reports that those who experience treatment interruptions are three times more likely to develop resistance to efavirenz or nevirapine. Your best defenses against developing resistance involve getting on medication, adhering to your treatment as prescribed (meaning: not missing doses, taking the medication at the recommended time of day and with—or without—food or other drugs as recommened), and maintaining an undetectable viral load. Adherence has increased over time due to antiretroviral therapy medications becoming more tolerable (and now available in easy-to-take, single-tablet regimens). As the Infection, Genetics and Evolution report noted, “Most ART regimens used for first-line therapy are sufficiently potent to completely block HIV-1 replication and have a genetic barrier to resistance high enough to maintain long-term virological suppression.” Because gaps in treatment play a pivotal role in the development of drug resistance, WHO’s Global Action Plan on HIV Drug Resistance is encouraging people with HIV to take medications as prescribed, and doctors and service providers to keep poz people on treatment, increase viral load testing (to catch viral rebounds that happen as resistance is developing), and quickly facilitate switching to other medications when resistance is suspected.
What’s Cross-Resistance?
When the virus develops a resistance, there is often cross-resistance to the whole drug class. Crossresistance occurs when a mutation that gives the virus an edge against one medication also works against similar drugs, even if you’ve never taken them. If you develop a resistance to one NNRTI (like rilpivirine), then another NNRTI (like efavirenz) is also unlikely to work.
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Do Particular Drugs Make a Difference?
Some drugs have a higher risk of resistance and only need one mutation for the virus to gain complete resistance. This is particularly true with nonnucleoside reverse transcriptase inhibitors (nevirapine, efavirenz, rilpivirine, and etravirine), integrase inhibitors (raltegravir), and some nucleoside analogs like 3TC and FTC. These drugs are also more vulnerable if used in combinations that aren’t effective in maintaining viral loads below 50 copies/ml. Fortunately, some drugs offer more protection against HIV developing resistance. For example, the ODIN trial found that darunavir (a component of both Prezista and Prezcobix) has a high genetic barrier to HIV developing drug resistance. It stops the virus both from multiplying and mutating. Decreasing the rates of duplication and cutting down on the number of errors the virus makes reproducing dramatically reduces the opportunity for drug resistant mutations to appear and replicate.
What if I Develop Resistance?
Fortunately, if you do develop a resistance, numerous treatment options are still available to replace your current medication. Talk to your doctor about switching. Just because you’ve developed a resistance to one drug— or even a whole class of drugs—doesn’t mean that other HIV meds won’t work for you. HIV strains with multiple drug-class resistances are rare, but there’s also new hope for folks who have developed a resistance to most classes of antiretrovirals. Both ibalizumab (a monoclonal antibody)—a longacting injectable already approved by the U.S. Food and Drug Administration—and fostemsavir (an attachment inhibitor, still in development) have been shown to fight multidrug-resistant HIV when added to a previously failing antiretroviral regimen. Each drug uses a novel attack on the virus, creating new classes of drugs in the process and giving people with HIV more ways to fight antiretroviral resistance.
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Stepping into his Golden Globe-winning role of Freddie Mercury, the flamboyant HIV-positive frontman for Queen, one of the biggest stadium rock bands in history, RAMI MALEK showed the world his amazing range. But Bohemian Rhapsody isn’t just another musician biopic and Malek is far from your ordinary method actor. The politically progressive son of Egyptian immigrants, Malek is redefining how Arab-American men are treated in popular culture, by drawing a line at the kinds of roles he will and won’t do. Along the way, he’s winning accolades for playing a bisexual man of color living with HIV and rebelling against the stigma and fear at the height of the AIDS epidemic.
STEVE GRANITZ/WIREIMAGE/GETTY IMAGES
BY DIANE ANDERSON-MINSHALL
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As Rami Malek takes the stage, a wiry bundle of energy and expectation, his short hair, tight white jeans, and studded leather cuff help him look every bit the part of a gay man in the 1980s. But this isn’t any man (and if it were 30 years later, we’d probably be using the word bi or pansexual, not gay, to describe him). The scene recreates Freddie Mercury’s performance during the now-famous Queen set at the charity concert Live Aid, which has been called one of the greatest rock shows in history. The 1985 performance (re)introduced Queen to nearly two billion viewers in 150 countries, according to CNN— the largest TV audience ever. My friends and I were teenagers then, gathered around a tiny kitchen TV in rural Idaho watching the Live Aid telecast on MTV. And now, watching Malek take the stage, preening and pumping, emoting, and singing out to the audience for their legendary call backs, I get the same chills. Many viewers do. That’s because Rami Malek isn’t playing Freddie Mercury; he’s absolutely channeling the long-dead singer. Even Mercury’s Queen bandmates sometimes got lost in the performance on set. The music (an amalgamation of Mercury, Malek, and Canadian singer Marc Martel) and the clothes (including the mastery of the V-neck onesie) are spot-on. But what sells you on Malek as Mercury is his bombastic peacocking—that thrusting leg, the grandiloquent poses, the fist pumps—all the mannerisms that turn Malek into Mercury, a character he so embodies in the film Bohemian Rhapsody, that at times you forget he’s not Mercury. Malek won a Golden Globe earlier this year for the performance, and the film took home the award
for best motion picture drama. Malek, who already has an Emmy for USA’s hit thriller Mr. Robot, began preparing to play Mercury long before he even got the part. “Before the film was even green lit, we were going to do a test at Abbey Road,” Malek recalls, “and I just, I needed all hands on deck so I sat down with a few choreographers.” He was trying to nail Mercury’s movements: the brazen sexuality, his onstage bravado, his mannerisms enshrined in pop culture history. “But what I really realized is I didn’t need someone to help me learn dance moves or steps. I really needed to inhabit his, as you said, peacocking and his physicality and mannerisms and the way he articulated his body— how he can keep the beat, how balletic he could be.” The irony of trying to mimic what seemed so organic to Mercury wasn’t lost on the actor. “The way he struts is oftentimes born out of pure spontaneity,” notes Malek. “It’s just some eruption out of his body I wanted to be able to do at the drop of a hat.” So he turned to “phenomenal” movement coach Polly Bennett, who became his “lifeline” to the character. Bennett had him studying Mercury and the people who had influenced Mercury’s peacocking (from Liza Minnelli to David Bowie). “We would often sit and just watch his interviews,” Malek says. “We would just see his body language. The way you would analyze if anyone was uncomfortable or how they could be deflective or inclusive, then obviously his movements on stage. The transformation of his physicality from the ’70s to the ’80s. I mean when he throws his fist out into the air in ‘Radio Ga Ga’ on Live Aid, a lot of that comes from his training
JEFF SPICER/GETTY IMAGES/TWENTIETH CENTURY FOX
“WHAT I FIND VERY REVOLUTIONARY ABOUT FREDDIE MERCURY IS HE REFUSED TO EVER BE DEFINED OR BE CATEGORIZED OR BE PUT INTO A BOX.”
MARCH / APRIL 2019
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STEVE GRANITZ/WIREIMAGE/GETTY IMAGES (TOP); STEVEN FERDMAN/GETTY IMAGES (BOTTOM)
Rami Malek with his Bohemian Rhapsody costar (and current girlfriend) Lucy Boynton (top) and attending the film’s New York premiere with his parents (bottom)
as a boxer when he was a child in boarding school. So it’s little nuances like that that were extremely useful and enlightening.” Malek also traveled to London, got a dialect tutor, and had a costume designer create a set of Mercury’s infamous teeth that he would wear to practice. In real life, Mercury had four extra teeth which pushed his front teeth forward. Kids teasingly called him “Bucky” but Mercury never changed his smile with dentistry, fearing it would impact his vocal range. Working with the prosthetic took some getting used to for Malek. “It took quite a while but what I was very cognizant of is this: I didn’t want to get used to them,” he says. “I wanted them always to be a bit uncomfortable and a reminder of something that he had to deal with on a daily basis. Something that was inhibiting and something that I think made him quite self-conscious and vulnerable.” In fact, even at the height of his fame, Mercury would often cover his mouth involuntarily. “Yeah, he did all the time,” Malek says. “I don’t know how many times it made it into the movie but I tried to do that as often as possible. And he had this unique way of covering his teeth with his lips constantly. I honestly didn’t know how I would be able to do that but once I got those teeth in it became almost second nature.” Malek, whose star has been on the rise since his acclaimed arc as suicide bomber Marcos Al-Zacar on 24, has taken a circuitous route to get to Bohemian Rhapsody. From a small part on Gilmore Girls to gay teen Kenny on War at Home, the Night at the Museum films, The Pacific, and Larry Crowne, Malek’s roles grew steadily more significant over the last several years. He chose after 24 to stop playing terrorists, the stock role for Arab-American actors in Hollywood. (“I kind of told myself that one day… I’m just going to draw a stark line into what I will and will not do.”) But his household name breakthrough came in working with showrunner Sam Esmail, another EgyptianAmerican in Hollywood, on Mr. Robot. Both men share a sense of “otherness” that comes out in different ways on the acclaimed dystopian TV series. Malek, who was recently featured on the cover of the inaugural issue of GQ Middle East, is the Los Angeles-born son of Coptic Christians who emigrated from Egypt to America, dreaming of a new life while holding on to traditions from back home. The magazine was quick to point to Malek’s Middle East bona fides (“Arabic was the first language out of Malek’s mouth,” for example) but in some ways it missed how uniquely American the 37-year-old is as well. After all, Malek (who has a twin brother who is a school teacher and an older sister who is a doctor) grew up in California’s San Fernando Valley, an area that made youth culture famous in seminal ’80s-era films Fast Times at Ridgemont High and Valley Girl. Malek attended high school with actresses Rachel Bilson and Kirsten Dunst, graduating in 1999, and going on to get a Bachelor of Fine Arts degree in 2003 from Indiana’s University of Evansville. (The next year he got the guest spot on Gilmore Girls and he’s worked steadily since.) Last fall, Malek’s Twitter feed praised bisexual activist Emma Gonzales and the Parkland survivorsturned-antigun-crusaders; thanked Christine Blasey Ford for her “strength and bravery” in front of HIVPLUSMAG.COM
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Congress; and suggested people make donations to the American Civil Liberties Union. But much of his social media callouts were leading up to the unveiling of the role he’s studied a lifetime to play: Farrokh Bulsara, a.k.a. Freddie Mercury. But understanding Mercury meant one had to first understand Farrokh. “That was one thing I was very cognizant of at the start,” Malek admits. “I said to our producers and writers, ‘Look, we have some of the most entertaining music you could ever ask to score a film. We have the most fascinating human being you might come across named Freddie Mercury. What is going to be very, very interesting is to discover Farrokh Bulsara. And it’s something that is as important as any other part of this story.’” Born in Tanzania, raised in a British boarding school near Bombay, India, before moving to London, Bulsara was, like Malek, an artist who moved outside the expectations of his cultural heritage without forgetting his roots. Mercury’s uniqueness was apparent even as a youth, Malek says. “You always knew he had something special in him and it was just a matter of time before it was going to make its way onto that stage or into the music. But early on, as he was, I think, struggling with his identity and sense of self, there’s still something burning inside of him which [he couldn’t] help but subdue. I wanted to make sure that, I guess gradually, you saw the evolution of that into the full glamour of Freddie Mercury.” It may surprise some viewers that Bohemian Rhapsody, which centers on a queer immigrant fronting a major rock band in the 1970s and ’80s, battling internalized biphobia, xenophobia, and AIDS (when HIV stigma was at its peak), feels particularly timely in 2019. Have the political battles of the recent years impacted Malek’s work? “I will say a resounding yes, without elaborating,” he says. “How could it not? Everybody’s work has. I can’t take my eyes off of what’s going on. Who can?” 46
“YES, I AM SO, SO, SO VERY AWARE OF THE IMPACT THAT HE COULD’VE HAD BY COMING OUT. I ALSO RESPECT AND APPRECIATE HIS DESIRE TO HAVE PRIVACY AND TO EXIST IN THE WAY THAT HE WANTED TO. THERE’S SOMETHING ABOUT JUST BEING A HUMAN BEING AND NOT HAVING TO BE LABELED.”
BOHEMIAN RHAPSODY IS NOT WITHOUT CRITICS. In part, that’s because by offering up a film based on the memories from Mercury’s survivors, including bandmate Brian May, former partner Jim Hutton, and former fiancée Mary Austin, the film shows the Mercury they knew in the context they knew him. By all accounts, Mercury was a man who struggled with internalized homophobia and biphobia. You can’t help but watch the film wondering if Mercury and his “true love” Mary Austin today would just accept that Mercury was bisexual (perhaps polyamorous), and make allowances for his sexual attraction to men, without dismissing his desire to also be with Mary sexually and romantically. (Or conversely, gay fans might wonder if today he would have come to terms with being gay earlier in his life and have lived happily ever after with someone like Jim.) If LGBTQ viewers are polarized it will perhaps be Mercury’s fault, not the fault of Bohemian Rhapsody’s creators. Malek says, “I gravitate to very conflicted characters and it’s easy to say that he was very conflicted, not only about so many aspects of his identity and his sexual identity and that, I think, had the makings of someone who was going to be fiercely appreciative of his place in the world and fiercely private.” Set in a time when bisexuality seemed to be largely invisible outside Hollywood, it’s hard to watch the true-to-life moment when Mercury came out as bisexual to Mary, and she retorts, “Freddie, you’re gay.” It’s painful to see that in 1970—and still a bit today— there seemed no viable option outside the binaries of gay or straight. “I wholly understand where you’re coming from,” Malek admits. “You know, in this story we not only have to honor Freddie Mercury; we have to honor Mary Austin. And one of the few things we really know [is] the way that conversation occurred.” The timing of Mercury’s HIV diagnosis appears twisted in the film as well, with most records showing the musician found out he was living with HIV
JUN SATO/WIREIMAGE/GETTY IMAGES
Rami Malek (middle) with Bohemian Rhapsody costars Joe Mazzello (left) and Gwilym Lee in Japan
MARCH / APRIL 2019
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in 1987, long after Live Aid. But the film uses his diagnosis as a plot device, a decision that was out of Malek’s hands. The fact that director Bryan Singer, who was removed from the film early after alleged disagreements with Malek, remains on the credits has also been contentious, since Singer has been accused of sexual assault more than once. But for Malek, his job was in getting the wildly amazing Mercury immortalized on film to the best of his abilities. “What I find very revolutionary about him is he refused to ever be defined… or be categorized or be put into a box. He was a performer and he wanted to make music and share that music and have that relationship with an audience. There was this ability he had, and a desire to connect with everyone in the audience... You see him when he’s performing, he rarely looks down at the first few rows. He’s reaching out to everyone… That was his great ability as a human being, to create this sense of unity.” The biopic doesn’t shy away from Mercury’s gay life (he jokes that there’s only enough room in the band for “one hysterical queen”) and the debauchery, outrageous parties, and random hookups. Much of the gay sexuality revolves around Mercury’s personal manager for nearly a decade, Paul Prenter (played by Allen Leech), who in real life exploited, isolated, and very publicly betrayed the singer by outing him to the media and naming lovers Prenter alleged were dying of AIDS complications. The scene where Mercury realizes the betrayal, and its buildup, is wrenching and some gay audiences will hate it, both preferring to believe that Mercury happily chose to indulge in the excesses of drugs, sex, and rock and roll; and wanting to see more positive gay romantic portrayals. To find most of the gay sex in the film wrapped around Prenter will disappoint many fans. “I was cognizant of every aspect of how we were approaching that part of the story,” says Malek. “That aspect of that part of Freddie’s life with Paul Prenter feels true to life so it’s another moment where the decision to go there felt like it was coming from an accurate place. But… those were decisions that were out of my control. I pushed as hard as I could to make sure we saw Freddie in a loving relationship with Jim and the evolution of that relationship. It’s the time construct of when Jim and Freddie actually met… it was around that period of Live Aid so that, unfortunately, you don’t get to see the actual love life with Jim Hutton,” because the movie concludes shortly after the concert. Jim Hutton (played by Shameless star Aaron McCusker) is the refreshingly self-respecting gay man audiences will love—but he appears, sadly, a bit late in the film. Other performances are from Mike Myers (in an absolutely unrecognizable role), Lucy Boytnon (as Mary Austin), Midsomer Murders star Gwilym Lee (as bandmate Brian May), Ben Hardy (bandmate Roger Taylor), and Meneka Das and Ace Bhatti (as Mercury’s parents). “Our cast... had my back in every moment,” says Malek. “I was kind of shook by the level at which everyone was operating every day.” IT’S A STORY THE CAST WAS ANXIOUS TO GET RIGHT. “Every day we all felt the immense responsibility together,” Malek says. “[Mercury] exists in all of our minds as one of the greatest performers of all time… he has one of the greatest voices of all time; arguably
the greatest. I just wanted to embrace it all and challenge myself. What greater challenge than playing Freddie Mercury?” Malek found common bonds with the musician, things he fell in love with. “His sense of wanting to belong. This sense of sharing that feeling with an audience. Just being exactly who he wanted to be was... something that I found so inspirational and quite liberating. I could [also] identify with the younger parts of him. Even the searching for identity.” The actor, who is quiet and thoughtful in conversation, says he doesn’t want to talk about his own life, especially about his romantic life. “In the spirit of Freddie, if I learned from him I’d say… ‘No darling, I’m sorry. I can’t tell you that.’There’s something about just being a human being and not having to be labeled. That was the way he lived and he held true to that in his entire life.” Still, Malek understands why LGBTQ youth need to know artists like Mercury were queer. “Yes, I am so, so, so very aware of the impact that he could’ve had by coming out,” he admits. “I also respect and appreciate his desire to have privacy and to exist in the way that he wanted to.... I find it to be just a real expression of his humanity. Having some sense of anonymity at my level is difficult. I cannot imagine what it would’ve been like for him, probably one of the most recognizable human beings at that time.” Malek says playing Mercury was more than just a role; it’s something that will stick with him. “I don’t think I can ever just turn the dial off and walk away,” he says. “With Mr. Robot, Elliot has become almost somewhat part of my DNA. He’s in that fabric somewhere. It will take a very thorough cleansing one day to have some sort of distance from that character. It can be quite difficult, especially when you don’t necessarily want to walk away. That was the case with Freddie as well. I’ve likened it to… when you are saying goodbye to someone that you’re in love with at the airport and you keep looking back as you’re walking towards the plane. I can [feel] that they’re still there. So I keep looking over my shoulder almost, so to speak.” Sick at a time before there was treatment for HIV, Mercury in the film is clearly thinking about his own legacy. Live Aid stands as a real testament to his desire to solidify it. Malek isn’t facing that same approaching deadline, but has he thought about his own legacy? “I’m just hoping to play some characters when I look back and say, ‘That was a role that I think was somehow progressive, somehow [it] started a conversation, and was, of course, also entertaining’. But if it made us somewhat introspective about who we are as human beings and a society, or about some atrocity from the past, or what it meant to be a human being struggling with identity at a certain period of time, and we can reflect on how that’s changed in our present time, then I will feel somewhat fulfilled.” (A version of this article previously ran in The Advocate, our sister magazine.)
THIS SOUNDTRACK ROCKS A benefit concert to raise money for famine relief in Ethiopia, Live Aid was held in London and Philadelphia simultaneously and telecast to, some experts say, about 40 percent of the world’s population in the largest satellite TV linkup to that date. (Supporting concerts also happened in Japan, West Germany, Canada, Australia, and the Soviet Union.) In the U.K., Queen played their greatest hits, including “Crazy Little Thing Called Love,” “Radio Ga Ga” (the song that inspired Lady Gaga’s name), “Bohemian Rhapsody,” “We Will Rock You,” and “We Are the Champions.” Now tracks from that Live Aid performance are being released for the first time on the Bohemian Rhapsody soundtrack along with rare live tracks, new updates of the classics, and unheard studio recordings. (And yes,“Fat Bottomed Girls” and the Queen and David Bowie duet “Under Pressure” are on it.) HIVPLUSMAG.COM
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B AC K TA L K
ONE IN A MILLION ONCE ON THE BRINK OF DEATH, SIMBA SAY OVERCAME AN AIDS DIAGNOSIS TO BECOME A PROFESSIONAL MODEL—AND FOUND A MILLION REASONS TO LOVE.
Model, activist, and “soul surfer” Simba Say enjoys the view on a trip to Africa.
YO U ’ D N E V E R K N OW I T by looking at the fit, handsome activist and
model today, but it was only a few years ago that Simba Say lay dying in a hospital bed. He was so close to death, he said his last goodbyes to his parents and prepared to meet his maker. He was raised in a devoutly Christian home, and faith has always played an important role in his life. Coming out gay to his very religious family was difficult. Still, when he received a positive diagnosis in 2013, Say wouldn’t start treatment until he shared the news with them. The only problem was he initially couldn’t bring himself to have that conversation with his family. “Weeks went by before I actually decided to sit my mom and dad down, and even before I went to see a specialist,” Say shared in a video for A Million Reasons to Love (AMR2L.com), a nonprofit he founded that raises funds for LGBTQ- and HIV-related organizations throughout the U.S. “And that’s where things got very interesting for me in this whole process.” After talking with his parents, Say chose not to see an HIV specialist, who would have prescribed the highly effective antiretroviral therapy that is now a universal treatment for those living with HIV. Instead, he says he was seduced into trying a nontraditional, non-Western-medicine approach that promised to “cure” him of HIV. It didn’t. Meanwhile, his health continued to fail, and Say continued to wrestle with his relationships with God, family, and depression. 48
As for “trying alternative treatments—don’t,” Say advises bluntly. “I have been there, and I understand that when emotions are high, intelligence is low. Don’t let the stigmas of HIV define your path with treatment. When diagnosed, I instantly fell victim to my own mind. The echoes of stigmas rooted in faith and government, stigmas rooted in the LGBT community itself, stigmas rooted in the South—I quickly let take control. I let the fear of others define me as ‘dirty’ [and] take away everything that was beautiful about myself. So much that it almost took my life.” He recalls ending up in the hospital when “my CD4 count had dropped into the low 50s… and I had a viral load of over 2.2 million,” in addition to being diagnosed with Kaposi sarcoma, an AIDS-related skin cancer—all signs that his HIV had progressed to stage 3. With his physical and mental health both rapidly spiraling downward, Say was feeling desperate. He turned to the church of his childhood. “Even though I’d run from the church—because of my sexuality, because of the fear of judgment—I ran back,” he explains. “Running back unfortunately introduced me to a very dark side of religion.” After reaching out to the church for help, Say was convinced to see religious-based “healers” in San Antonio, Texas, an experience he describes in retrospect as “horrific.” Fortunately, Say was eventually able to escape his oppressive situation, get counseling, and finally find appropriate medical care. Today, the out gay, poz working model, entrepreneur, and activist is happy to report he’s in great health and his viral load has been suppressed to undetectable levels. That means he’s no longer able to transmit the virus to others, something Say is proud to share with the world. Getting the facts out about HIV, including that undectable equals untransmittable (U=U), is a huge part of why Say is going public with his own story. He says despite how far we’ve come, there’s still a lot of stigma and misinformation out there, and the media can still get it wrong. He says that although reactions have been very positive and supportive, “there have been some unfortunate experiences—such as a reporter stating that I am contagious and can spread it others, yet I am undetectable.” Though he feels that the reporter wasn’t being intentionally offensive, Say says after witnessing a poz acquaintance’s reaction to the story, he was inspired to do more. “[He] is not public at all about it and he doesn’t even try to date because of the stigmas still prevalent in the LGBT community. Seeing his reaction of pain and anger to those few statements she made helped me realize I needed to do better at raising the level of awareness on where HIV is today.” And with A Million Reasons to Love, he’s doing just that.
COURTESY SIMBA SAY
BY DESIRÉE GUERRERO
MARCH / APRIL 2019
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