Plus 123 March April 2018 by Pride Media

BECAUSE YOUâ&#x20AC;&#x2122;RE MORE THAN YOUR STATUS

DIPLOMATIC DECISIONS

THINGS YOU NEED TO KNOW ABOUT AGING WITH HIV

HIV+ IN THE FOREIGN SERVICE

Activist

ASHLEY ROSE MURPHY THIS TEENAGE BADASS IS A LONG-TERM SURVIVOR

MARCH/APRIL 2018 www.hivplusmag.com

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

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

IMPORTANT SAFETY INFORMATION What is the most important information I should know about DESCOVY? DESCOVY may cause serious side effects: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking DESCOVY, your HBV may suddenly get worse. Do not stop taking DESCOVY without ﬁrst talking to your healthcare provider, as they will need to monitor your health. What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: • Changes in your immune system. Your immune system may get stronger and begin to ﬁght infections. Tell your healthcare provider if you have any new symptoms after you start taking DESCOVY. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you to stop taking DESCOVY if you develop new or worse kidney problems. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that

can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effect of DESCOVY is nausea. Tell your healthcare provider if you have any side effects that bother you or don’t go away. What should I tell my healthcare provider before taking DESCOVY? • All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how DESCOVY works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Ask your healthcare provider if it is safe to take DESCOVY with all of your other medicines. • If you are pregnant or plan to become pregnant. It is not known if DESCOVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking DESCOVY. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Important Facts about DESCOVY, including important warnings, on the following page.

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

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

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

POSSIBLE SIDE EFFECTS OF DESCOVY

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

DESCOVY can cause serious side effects, including: • Those in the “Most Important Information About DESCOVY” section. • Changes in your immune system. • New or worse kidney problems, including kidney failure. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effect of DESCOVY is nausea. These are not all the possible side effects of DESCOVY. Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with DESCOVY.

ABOUT DESCOVY • DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. • DESCOVY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.

BEFORE TAKING DESCOVY Tell your healthcare provider if you: • Have or had any kidney or liver problems, including hepatitis infection. • Have any other medical condition. • Are pregnant or plan to become pregnant. • Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-the-counter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.

GET MORE INFORMATION • This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more. • Go to DESCOVY.com or call 1-800-GILEAD-5 • If you need help paying for your medicine, visit DESCOVY.com for program information.

HOW TO TAKE DESCOVY • DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines. • Take DESCOVY with or without food. DESCOVY, the DESCOVY Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: September 2017 © 2017 Gilead Sciences, Inc. All rights reserved. DVYC0085 11/17

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IN THIS ISSUE M A R C H /A P R I L 2 0 1 8

SHUTTERSTOCK (16, 30); COURTESY MICHAEL VARGA; FREDERICK M. BROWN (MURPHY AND THERON)

Left: Ashley Rose Murphy (left) with Charlize Theron at WE Day California. Above, from top: Homeless teens need help; aging gracefully with HIV; poz former diplomat Michael Varga (left) with former president Bill Clinton in the mid-1990s. Cover: Activist Ashley Rose Murphy, photographed by Wes And Alex (@Wes_Alex) for WE Day California.

ON THE COVER

FEATURES

24 FIGHT CLUB Born with HIV, Ashley Rose Murphy has been an activist since she was in elementary school. She fought mild cerebral palsy, Fetal Alcohol Syndrome, and a learning disability—as well as HIV stigma—to become a kickass 19-yearold activist, a long-term survivor, and a Elizabeth Glaser Pediatric AIDS Foundation ambassador.

16 HOUSTON 911 Even before Hurricane Harvey hit in 2017, Houston advocates struggled for funding to provide HIV-related services for youth experiencing homelessness, especially at-risk LGBT teens. 20 DIPLOMATIC IMMUNITY Poz diplomat Michael Varga was given months to live (in the 1990s). Instead, the former State Department employee continues to thrive. 30 15 THINGS YOU NEED TO KNOW ABOUT HIV & AGING Two specialists, Dr. Frank Spinelli and Dr. Gary McClain, answer your top questions about aging well with HIV. HIVPLUSMAG.COM

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editor in chief DIANE ANDERSON-MINSHALL • svp, group publisher JOE VALENTINO

creative director RAINE BASCOS deputy editor JACOB ANDERSON-MINSHALL senior editor SAVAS ABADSIDIS managing editor DAVID ARTAVIA associate editor DESIRÉE GUERRERO contributing editors KHAFRE ABIF, TYLER CURRY, MARK S. KING, ZACHARY ZANE mental health editor GARY MCCLAIN contributing writers DR. EVAN GOLDSTEIN, RAHEL NEIRENE, TRUDY RING, DR. FRANK SPINELLI creative director, digital media DAVE JOHNSON interactive art director CHRISTOPHER HARRITY online photo and graphics producer MICHAEL LUONG, TEVY KHOU front end developer MAYRA URRUTIA senior drupal developer NICHOLAS ALIPAZ, SR. traffic manager KEVIN BISSADA manager, digital media LAURA VILLELA svp, publishing, integrated partnerships GREG BROSSIA senior director, integrated partnerships STUART BROCKINGTON directors, integrated partnerships TARA DABUNI, ADAM GOLDBERG, NOREEN MURRAY, PAIGE POPDAN director, integrated marketing BRANDON GRANT senior manager, integrated marketing JAMIE TREDWELL managers, integrated marketing GRETA LIBBEY, CASEY NOBLE events manager JOHN O’MALLEY designer, integrated marketing MICHAEL LOMBARDO coordinator, integrated sales & marketing HAYLEY YATES senior director, ad operations STEWART NACHT manager, ad operations TIFFANY KESDEN director of social and branded content LEVI CHAMBERS 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 president LUCAS GRINDLEY executive vice presidents JOE LANDRY, BERNARD ROOK senior vice presidents GREG BROSSIA, CHRISTIN DENNIS, JOE VALENTINO vice president ERIC BUI 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 43430 E. Florida Ave. #F PMB 330, Hemet, CA 92544 • 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 © 2018 by Here Publishing Inc. All rights reserved. Printed in the USA.

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MARCH / APRIL 2018

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IN THIS ISSUE M A R C H /A P R I L 2 0 1 8 BUZZWORTHY 7 HOLD THE SHAME Web series Sin Vergüenza fights stigma in the Latinx community.

8 IT'S BLISS Jennifer Holliday headlines Bliss 2018, a charity auction for the San Francisco AIDS hospice, Maitri. 9 DINING FOR DOLLARS Going out to dinner to fund HIV resources? Count us in. 9 RIVER STYX Aging poz rocker comes out to support the World AIDS Museum. 13

CRIME FIGHTERS California modernizes its HIV-related statutes—mostly.

YOU'RE FIRED Activists are alarmed as Trump fires remaining AIDS council.

RESISTANCE 18

NEW TRICKS A newly approved twodrug regimen gives long-term ART users new options for fighting resistance.

CHILL 39 COMING OUT POLY He reluctantly became a sterotype, but took control of his sexual and mental health by doing so.

TREATMENT/TASP 40 WOMEN-POWERED VACCINE New vaccine trials focus on women in Africa at high risk of becoming HIV-positive. 41 BE MY BABY FDA approves the first HIV drug for newborns. 42 HEART AND SOUL A new heart drug could especially benefit people with HIV. 43 BRAIN STORM Poz folks 50-plus have heightened risk of developing brain disease.

DAILY DOSE

SHUTTERSTOCK (39, 40, 42); COURTESY ALTAMED HEALTH SERVICES (7)

47 BEST DAY OF MY LIFE Coming out set me free, and helped me find my purpose.

BACK TALK 48 ARTISTIC DIFFERENCES Poz artist Will Northerner was told he'd die three decades ago. Instead he took artistic license—and lived to tell the tale.

39 40

HIVPLUSMAG.COM

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EDITOR’S LETTER

M I C H A E L VA R G A F E L L in love with both international travel and

DIANE ANDERSON-MINSHALL EDITOR IN CHIEF EDITOR@HIVPLUSMAG.COM 6

TONY DONALDSON

making a difference in the world as a young Peace Corps volunteer who served in Africa during the 1970s. By 1995, Varga was in the Foreign Service and—after having served in United Arab Emirates, Syria, and Morocco—was an American diplomat stationed in Toronto, Canada. An economics officer who felt like he was at the top of the world, in the middle of helping craft U.S. foreign policy, Varga was also juggling fewer than 100 T-cells and an AIDS diagnosis. Like many of us, his experience was of friends dying all around him. So when a doctor told him he had 18 months to live, he became a sudden retiree and started a whole new life—one that has lasted, well, a couple of decades more so far. Varga is now a happy, relatively healthy, long-term survivor of HIV and he shares his story of what happened in those 23 years on page 20. At the other end of the spectrum, is our amazing cover star, Ashley Rose Murphy, who may be a long-term survivor but is also just 19 years old. Born HIV-positive, she spent nearly six months hospitalized in an induced coma, and was never expected to survive. But this young fighter is more than a survivor—she came out at 7 and ever since has been an outspoken activist. An ambassador for the Elizabeth Glaser Pediatric AIDS Foundation, the college student recently launched her own campaign, OutLoud on HIV. (Read Murphy’s inspiring story on page 24.) In this same issue, we answer the 15 most common questions doctors and therapists hear about aging with HIV. The answers come from two of our favorite New York experts: Plus’s mental health editor, Dr. Gary McClain, a therapist specializing in chronic medical conditions, and author of several books including The Complete Idiot’s Guide to Zen Living and Empowering Your Life With Joy; and Plus’s medical expert, Dr. Frank Spinelli, the popular physician who hosts Dueling Doctors and author of The Advocate Guide to Health and Wellness. Both docs offer their unvarnished opinions about what you really need to know to stay healthy as you age—especially when you’re living with HIV (and sometimes other conditions that go hand in hand with being positive). Managing editor David Artavia looks at HIV among LGBT youth in Houston, especially as the city recovers from last year’s Hurricane Harvey (see page 16). In the nation’s fourth largest city—which sprawls over 600-square miles and is inhabited by 2.3 million people—combating new HIV diagnoses, building more shelters, and providing more HIV tests may not be enough. I was touched by the social workers who are trying to help these kids get mental health and HIV services, while themselves making a minimum wage salary and living off food stamps to support their own families. When you realize 60 percent of these LGBT kids were booted from their home by a parent or guardian, it hits you just how critical nonprofits are in keeping youth alive and healthy. Also in this issue: Styx bassist Chuck Panozzo promotes Ft. Lauderdale’s World AIDS Museum (page 9), Jennifer Holliday headlines a benefit for Maitri Compassionate Care (page 8), a popular Latinx web series eradicates HIV stigma (page 7), and California became the latest—and largest—state to modernize its criminal statutes related to HIV (page 13). Oh, and it’s the end of “cuffing season,” so time to get moving and see what’s out in the world for you. Enjoy spring!

MARCH / APRIL 2018

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buzzworthy

SHAMELESS This telenovela smashes stigma with dramatic flair. BY DESIRÉE GUERRERO

The Sin Vergüenza cast (from left): Daniel E. Mora, Joanna Zanella, Maria Richwine, Eliana Alexander, and J.M. Longoria III

COURTESY ALTAMED HEALTH SERVICES

A POPULAR WEB series, Sin Vergüenza

(Without Shame), is changing the way people view HIV. The title of the series—now in its third season— is a direct reference to its underlying mission: eradicating stigma and shame around HIV within the Latinx community. The telenovela (or Latin-American soap opera) is a powerful cultural touchtone, which is exactly why this medium was chosen to tell the story of the Salazars, a fictional Mexican-American family affected by HIV. Not only has the dramatic format (and stars like The Bridge’s Daniel E. Mora) helped the show reach a broad audience, it has also allowed Sin Vergüenza to cleverly deliver education in the guise of entertainment. Although the series is certainly drenched in the usual juicy drama that telenovelas are famous for (secrets, lies, and love triangles), Sin Vergüenza is different in many ways. For starters, the Salazars are neither super wealthy (the old standard in soaps) nor extremely poor (an overly used trope in TV representation of Mexican-Americans). They are simply a hard-working, business-owning, middleclass family living in East Los Angeles, a much more real and relatable setting for many Latinx. Sin Vergüenza, which can be viewed at

SVseries.com, was created by Natalie Sanchez, clinic administrator of HIV services at AltaMed Health Services (AltaMed.org), which produces the show. Sanchez also made the innovative decision to film the show bilingually. Both an English and a Spanish version are created, doubling the show’s reach, not to mention the workload for the actors. When the Salazar family is impacted by HIV at the beginning of the series, it is handled with sensitivity and real facts (kudos to the writers and talented cast). At the end of each episode, a related topic is briefly covered—such as condom or PrEP use, and HIV testing—followed by a list of resources where viewers can find help or more info. Though HIV was the primary theme throughout the first couple seasons, the show has expanded to tackle other tough issues, like alcoholism, homophobia, transphobia, and domestic violence—and still includes resource information on where to get help. “Sin Vergüenza has become a prominent HIV educational tool among community health organizations across the country aimed at reducing HIV health disparities in the Latino community,” says Sanchez. “While viewers may be drawn into the drama of the series, our ultimate goal is to show the journey [that] persons living with HIV commonly experience.” HIVPLUSMAG.COM

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buzzworthy A Night of Bliss with a Dreamgirl

Broadway legend Jennifer Holliday (right) will headline Bliss 2018, Maitri Compassionate Care’s annual gala and fundraiser auction on May 6 in San Francisco. Holliday, an original cast member of Dreamgirls, will be joined by comedian and actor Jason Stuart (Birth of a Nation), singer Frenchie Davis (American Idol), and musician Jonny Zywiciel. For over three decades, since the early days of the AIDS epidemic, Maitri has provided residential hospice care to people living with HIV who are in need of hospice or 24-hour care. The name references a Sanskrit word meaning benevolence or “loving-kindness,” and that was something those dealing with AIDSrelated illnesses sorely needed when Maitri first opened—at a time when there were no antiretroviral treatments and many still refused care to those sickened by the disease. Believing no one should suffer or die alone, a Zen monk named Issan Dorsey opened the Hartford Street Zen Center to care for a student dying of AIDS complications, establishing the beginnings of Maitri. Within 10 years, Maitri had become a 15-bed facility with a home-like setting, designed to accommodate the special needs of people living with HIV. In 2017, former executive director Michael Sorensen told Plus, HIV “is contracted within social circles and affects the heart, mind, and spirit of those infected and those affected. Early in the U.S. epidemic, those same circles responded with support as the virus did its deadly work. As the face of HIV [and] AIDS has changed, those debilitated by the disease are those with less resources, less access to care, and fewer factors that promote resiliency.” In other words, Maitri still serves the most vulnerable in the community. But things have changed due to modern medical interventions— now its clients can “see a near death prognosis be reversed,” said Sorensen. “Since opening in 1987, Maitri has been the final home for more than 1,600 people who lived with AIDS,” says Toni Newman, development manager for Maitri. “We maintain a waiting list of between 10 to 15 people at any given time. Fourteen of our 15 beds are reserved for HUDdefined low-income people and represent 90 percent of San Francisco’s non-institutional hospice beds.” The San Francisco-based agency remains the only HIV-specific residential care facility in California focusing on the underserved community of those dying of, or severely debilitated by, AIDS complications. They serve as a model program and host health officials from around the world who come to learn how to care for the extremely ill. 8

In addition to raising money, this year’s Bliss will honor Bill Musick, a former executive director who returned as interim director after Sorenson left last year. Musick will be recognized for his 20 years of leadership and service, and Kirsten Havrehed will be honored for her nearly two decades as a devoted Maitri volunteer. In October, Musick was replaced by Anne Gimbel, the first woman to lead the residential care facility in its 31-year history. At the time Musick said, “I have truly cherished the opportunity to return to a second stint as Maitri’s executive director. With Anne’s leadership, the community can look forward to many more years of Maitri serving as a beacon of hope and nurture to those who otherwise might fall between the cracks of our health and social systems.” Newman told Plus last year the facility’s only regret is that it can’t do more for its clients: “What we worry about most is what happens with our patients after they leave our care. Most of the funding goes to caring for our patients while they are here. We don’t have funds for aftercare. We don’t have enough funding for programs that make sure that our residents don’t go back to doing harmful things to their bodies. Sometimes we even have residents who come back.” Last year, 77 percent of Maitri’s funding came from government support. The remainder came from grants, income from rent and program fees, and the support of individuals like those who attend the annual fundraiser. In the future, Maitri hopes to expand its services and offer more counseling and the aftercare Newman dreams of. But, she says, this can only happen with additional funding—and donor generosity. Bliss 2018 takes place May 6, and is presented by California Pacific Medical Center/Sutter Health. Hosting the event is professional auctioneer Dale Johannes, who will lead the charity auction. (MaitriSF.org) —DAVID ARTAVIA AND RAHEL NEIRENE

COURTESY JENNIFER HOLLIDAY

The original Dreamgirl, Jennifer Holliday, headlines Maitri’s Bliss fundraiser for people living with HIV.

MARCH / APRIL 2018

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A Delicious Proposition Raise money for HIV by going out to dinner.

On April 26, Dining Out For Life, the annual fundraiser for HIV hosted by Subaru, offers a delicious proposition: eat

at one of 3,000 participating restaurants (located in over 60 cities across the country) and the establishment will donate a generous portion to the cause. Proceeds are distributed in the cities where they were raised, funding local programs providing HIV care, prevention, education, testing, counseling, and other essential services. Dining Out For Life began in Philadelphia in 1991, and has since grown into an international event raising nearly $4 million annually and $38 million in the past decade. Spokespeople, who volunteer their time, include poz designer Mondo Guerra (Project Runway All-Stars), gay foodie Ted Allen (Chopped), actor Pam Grier (Foxy Brown, Jackie Brown), and chef Daisy Martinez (Viva Daisy!). “The wonderful thing about Dining Out for Life is you can do it three times a day—a different restaurant

for breakfast, lunch, and dinner,” Guerra said in a statement to the press. “You can sit down and have a meal with someone interesting, someone you love, maybe someone you haven’t seen in a while. And, it’s an opportunity to have a conversation.” That’s perfect, Guerra said, because “the fight against this disease begins with real, honest conversation.” Whether you talk about treatment or prevention, or chose one of those mealtime conversations to come out about being poz; you’ll know you’re supporting a great cause while doing so. While most cities hold their annual events on the last Thursday of April, some have alternate dates, so it’s best to confirm your local information. Do so, and find participating restaurants, at DiningOutForLife.com. —JACOB ANDERSON-MINSHALL

STYX AND STONES BEAT STIGMA A poz rock star on fear, isolation, and the World AIDS Museum.

SHUTTERSTOCK; JASON POWELL (PANOZZO)

L AST FALL, LEG ENDARY HIV-positive Styx bassist Chuck

Panozzo got real about living with shame and HIV—and publicly urged friends, family, and fans to join him in supporting the education and stigma-busting work of the World AIDS Museum and Educational Center (WorldAIDSMuseum.org). “I have lived with the struggle of being gay with HIV for quite some time,” the 69-year-old rocker wrote in a public statement. “I was ashamed and stigmatized by my secrets. It’s difficult enough to be different and even more challenging to live with big secrets. I have finally learned to enjoy my differences. Through the years, I struggled with my feelings about my diagnosis and found that the stigma of being HIV-positive was actually worse than having the disease itself.” Calling those feelings “crippling,” Panozzo wrote that, during a trip to the World AIDS Museum, he finally “confronted my fear and found a tremendous freedom in doing so. Along with this came a learning experience, and I became more aware of who I am and what I can do to change my feelings.” Located in Wilton Manors, Fla., the museum isn’t just for locals and tourists; it also offers Skype tours for those who can’t make it to South Florida. Panozzo was “so moved by the museum’s mission” on his visit that he decided to publicize its work, and call on Styx fans to join him in supporting it. “My story is shared by so many others,” Panozzo said. “With 80 million infected people in the world, I wondered how could there be only one AIDS museum? The only answer is stigma. Every time I tell my story, I become a little freer, and a little more comfortable in my own skin. The isolation of stigma is life-threatening. The light of education is life-saving.” Panozzo asked fans, “If you’ve been touched by my story or know anyone who is going through the same thing, please donate $10, $20, or any amount you choose to the museum today. I cannot stress enough how important this organization is to the world.” — JA M

HIVPLUSMAG.COM

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MASCULINITY. IDENTITY. INFIDELITY. PrEP. HOOK-UPS. L.A. PEP.

L.A.

STREAM THE SERIES FOR FREE

fallingforangels Boyle Heights - Koreatown - Leimert Park - Bel Air - Silver Lake - Malibu A ANTHOLOGY SERIES ABOUT L.A.’S DYNAMIC NEIGHBORHOODS A RIVETING RIVETING ANTHOLOGY SERIES ABOUT L.A.’S DYNAMIC NEIGHBORHOODS WRITWRITTEN AND DIRECTED BY A DIVERSE GROUP OF LGBTQ CREATIVES. TEN AND DIRECTED BY A DIVERSE GROUP OF LGBTQ CREATIVES. STARRING D. ALEXANDER AND CHAPTERAARON II “KOREATOWN” STARRING TYBLAKE-YOUNG CHEN AND DALEFOUNTAIN SONG

FALLINGFORANGELS.COM FALLINGFORANGELS.COM

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HIV is Not a Crime—in California

SHUTTERSTOCK

The world’s sixth largest economy becomes the latest state to modernize its HIV statutes. Activists had a huge victory against HIV criminalization laws last year when California modernized its HIV-related laws to be more in line with how other transmittable conditions are treated in the state. Under the previous legal language, an HIV-positive person could be convicted of a felony for not disclosing their status to a partner and having anal or vaginal sex without a condom—even if they were on treatment and undetectable. The old laws, like so many around the country, relied on outdated ideas about HIV and how it is actually transmitted. According to a Williams Institute study, in California 800 people were charged under HIV criminalization laws between 1988 and 2014. In 98 percent of those cases, the prosecution wasn’t required to prove the defendant had intended to transmit HIV to another person. None of the cases—that’s right, zero—required that transmission of HIV had occurred before the defendant was charged. The 2015 Williams Institute study also found that 67 percent of those who were arrested under these laws were people of color, 95 percent of the cases involved sex workers, and—perhaps most disturbingly— “every incident in which charges were brought resulted in a conviction.” The new law reduced even intentional exposure from a felony to misdemeanor, and also applies to those donating blood or tissue after becoming aware that they are HIV-positive (it’s still not legal for HIVpositive people to donate, but doing so no longer carries the risk of a felony sentence). The bill, SB 239, was coauthored by California State Senator Scott Wiener (D-San Francisco) and assembly member Todd Gloria (D-San Diego), and cosponsored by Equality California, the ACLU of California, APLA Health, Black AIDS Institute, Lambda Legal, Positive Women’s Network, and Californians for HIV Criminalization Reform. “[The bill] has been a priority of ours for a couple years,” Rick Zbur, executive director of Equality California, told Plus after it passed in 2017. “We realized we need to educate both the public and members of the legislature about why this is so important... and what these draconian penalties do. When you’re on treatment and undetectable, it’s virtually impossible to transmit the virus and I think most people don’t know that yet. I think when people understand that, they will view these laws [differently].”

As of 2014, 34 states still had laws that specifically criminalize HIV exposure (not transmission) through consensual sex. These laws were primarily created during the 1980s and ‘90s, and often based on fear due to the limited understanding of HIV—and the high mortality associated with AIDS—at the time. But once on the books, these laws failed to evolve with the advances in treatment and medical knowledge about HIV transmission. “Today, California took a major step toward treating HIV as a public health issue, instead of treating people living with HIV as criminals,” said Wiener on the day Governor Jerry Brown signed the new bill into law. “HIV should be treated like all other serious infectious diseases, and that’s what SB 239 does. We are going to end new HIV infections, and we will do so not by threatening people with state prison time, but rather by getting people to test and providing them access to care.” “State law will no longer discourage Californians from getting tested for HIV,” added Gloria. “With the Governor’s signature today, we are helping to reduce the stigma that keeps some from learning their HIV status and getting into treatment to improve their health, extend their lives, and prevent additional infections. This action keeps California at the forefront in the fight to stop the spread of HIV.” Unfortunately, the new law does not decriminalize HIV if you’re a sex worker. It remains illegal (and a potential felony) to engage in sex work after receiving a positive diagnosis. Coincidentally, the month the bill was signed, the Williams Institute released a new study, HIV Criminalization and Sex Work, which concluded, “Unfortunately, in California, black women bear the heaviest burden of the criminalization of sex work generally and the felonization of sex work while living with HIV. This is unlikely to change without drastic shifts in societal bias and discrimination or the decriminalization of sex work.” In the wake of the bill’s passage, a discouraging number of media outlets chose to run headlines like “California Lowers Penalty for Knowingly Exposing

Partners to HIV,” (CNN) and, “Knowingly Exposing Others to HIV Will No Longer Be a Felony in California,” (Los Angeles Times). While technically correct, they were also misleading. SB 293 does reduce the penalty associated with intentionally exposing a sexual partner to HIV, but the news coverage failed to recognize that an HIV-positive person cannot “expose” a sexual partner to HIV if they are virally suppressed, nor transmit the virus if their partner is on PrEP. And having sex while HIV-positive (without transmitting the virus) should never have been considered a felony. Sadly, mainstream media missed a perfect opportunity to reduce stigma and increase understanding about the realities of living with HIV.— D A V I D A R T A V I A AND DESIRÉE GUERRERO

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buzzworthy

TRUMP TO AIDS COUNCIL: “YOU’RE FIRED!”

All presidents want their own appointees, but activists warn Trump’s action is suspicious.

Centers for Disease Control and Prevention were told not to use certain words in official budget-related documents, such as “diversity” and “transgender.” “I was co-chair of the disparities committee, so much of my advocacy and policy references surrounded vulnerable populations, addressing issuing of diverse communities, specifically looking at the impacts of the LGBT community; namely, the disproportionate impact of HIV and AIDS to people of color, gay

Deadly Budgeting

10%

The cut in U.S. global HIV spending that would cause

5 million deaths by 2030. Source: Bill Gates, Time magazine, 2018.

SHUTTERSTOCK

In what activists see as another sign of his indifference to the AIDS epidemic, Donald Trump fired the remaining 16 members of the Presidential Advisory Council on HIV/AIDS in December, “without explanation via a letter from FedEx,” the Washington Blade reported. The firings came when many of the members had time remaining on their terms. Later, Politico reported that the advisory council executive director, Kaye Hayes, stated that former members could re-apply to serve on a new council that would be convened sometime this year. Six members had previously resigned last June, protesting the Trump administration’s lack of action regarding the disease. Scott Schoettes, one of those who resigned then, tweeted about the firings, saying, “No respect for their service. Dangerous that #Trump and Co. (Pence esp.) are eliminating few remaining people willing to push back against harmful policies, like abstinence-only sex ed.” Gabriel Maldonado, one of the members fired, told the Blade he didn’t know the reason for the dismissals, but said it could be due to “ideological and philosophical differences” with the administration. He cited reports that the employees of the

men, transgender women,” he said. “And a lot of those key vulnerable populations are not being prioritized in this administration.” Jim Driscoll, a Trump supporter who served on the council under President George W. Bush, defended the firings by saying they were “standard practice” for a new administration. “Now they need to find bona fide community people with appropriate expertise and the ability to adapt to the changed political circumstances,” he told the Blade. “It is fully understandable why a president would not want people who oppose his policies and might be happy to see him impeached serving as his HIV advisors. That would serve the needs of neither the president nor of people living with HIV or AIDS.” While President Barack Obama had terminated all Bush appointees to the council, this situation is different, said Maldonado, who was appointed by Obama and was to serve into next year. “It is common for appointees to be terminated and for folks to kind of want their own people in,” he told the paper. “I think where the discrepancy comes in is why a year later, number one? Two, many of us, our terms were over earlier this year and we were sworn back in, and three were [approved to stay] on nearly four months after an executive order was signed continuing the council.” Coming six months after the resignations, the firings are “a little too coincidental,” he added. Those who resigned were incensed that Trump had yet to appoint a director of the Office of National AIDS Policy and that he sought deep cuts in funding for both domestic and international HIV and AIDS programs. (While the budget for fiscal year 2018 remained unresolved, Congress continued funding those programs at previous levels.) Also, Trump’s proclamations on National HIV Testing Day and World AIDS Day did not mention LGBT people. —TRUDY RING

MARCH / APRIL 2018

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LOVE. PASSION. INFIDELITY. L.A. STREAM THE SERIES FOR FREE

fallingforangels Boyle Heights - Koreatown - Leimert Park - Bel Air - Silver Lake - Malibu A RIVETING ANTHOLOGY SERIES ABOUT L.A.’S DYNAMIC NEIGHBORHOODS WRITTEN AND DIRECTED BY A DIVERSE GROUP OF LGBTQ CREATIVES. CHAPTER I “BOYLE HEIGHTS” STARRING ADRIAN NUNEZ, LUIS LOPEZ AND STEVE GRAND IN HIS ACTING DEBUT

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BY DAV I D A RTAV I A

Houston,

We Have A Problem

n World AIDS Day 2016, Sylvester Turner vowed to “End HIV in Houston” by decreasing stigma and increasing testing in high-risk neighborhoods. But for a city as big as Houston, Texas (which has approximately 2.3 million residents, according to the 2016 census—and is the fourth largest city in the nation), to combat HIV and stigma, building more shelters and supplying more HIV tests isn’t enough. It’s going to take, quite literally, a village. Shattering stigma costs money, especially in Houston, where suburbs are spread across more 16

than 600 square miles, and high-risk populations are also scattered. Last year, more people moved to the area than to any other city in the U.S. Prior to Hurricane Harvey, Houston made significant progress in reducing homelessness. According to a 2015 report from The Coalition for the Homeless, homelessness in the area had dropped by 46 percent since 2011. Gentrification has fed economic growth, even in neighborhoods where it previously wilted. According to local activists and organizers, it has also created a façade that HIV no longer exists, when in fact the city has the most new diagnoses in the state: 1,282 in 2015 alone.

According to local activists, most of the Houston Health Department’s budget goes towards treatment, rather than HIV prevention, which makes it hard for them to put out effective prevention marketing strategies. Kelly Young, CEO of AIDS Foundation Houston, says the organization only receives $150,000 annually from the city to enact its prevention programs. And AFH can only receive that money if they meet an odd quota: a two percent rate hike in the number of new HIV diagnoses, otherwise their budget gets cut. “We’re targeted to go to the most high-risk people, but that’s all the money is for,” Young explains, adding

AP/MATT SEDENSKY

Homeless LGBT youth suffer from a lack of funding for services, especially for those around HIV prevention and treatment.

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that social workers work with what they have, but there is not enough money, nor resources, for “broad, saturated marketing campaigns around HIV.” Young adds, “People come up to us all the time, saying, ‘Why aren’t you doing this? Why aren’t you doing that?’ I’d love to do that but my tester is literally out from Wednesday night to Saturday night at [bars]… trying to get that two percent rate. Everything else we do on top of that is stuff we have to raise money for.” According to local statistics provided by the Salvation Army of Greater Houston, 60 percent of youth experiencing homelessness were kicked out by a family, relative, or foster parent. Another 16 percent ran away, and 12 percent aged out of the foster care or juvenile justice systems. The majority, 76 percent, don’t have a job in any capacity. Statistics also showed that 51 percent of youth experiencing homelessness use social media at least once a day, and 20 percent of them report they currently need mental health treatment. Given that many of them have experienced immense trauma in their lives (27 percent reportedly have PTSD, and 44 percent suffer from major depression), finding the courage to seek that treatment can be difficult. That’s where case managers come in: to act as an on-hand counselor who can drive them places, provide information, and help care for their medical needs. In the state of Texas, 16-year-olds can consent to medical treatments without an adult and can receive transitional or emergency housing. But advocates say there isn’t enough encouragement or education to explain to young people that they have these rights. LGBT youth “are sometimes afraid to ask for these services,” says Gerald Eckert, social services director of Salvation Army Houston. “If [case managers] are not walking them from the moment they’re tested to the clinic to get treatment, it’s unlikely to happen. We’ve been able to bridge some of that with volunteer nurses from the University of Texas School of Nursing. We’re also trying to get resources for not only PrEP, but also HPV-related cancer vaccines. These are things people have the will for, but it’s a matter of money.” According to Young, AFH needs to raise $1.4 million a year in donations just to keep its offices open and pay its staff of social workers and case managers, who are literally the heart of the operation. Because of its financial limitations, many case managers have more work than they can handle. “We test 1,200 people in a year with one Dozens of homeless people live beneath an overpass for Interstate 59 in Houston. They braved Hurricane Harvey, but now advocates fear the aftermath could hit them hardest, especially youth.

tester or case manager,” Young says. “You have to hit a two percent [new diagnoses] rate or get cut. You’re drilling in to see where you really have to go, so when a person comes in who’s HIV-positive, now the case manager has to focus on them on top of their quota. Now they’re doing double duty, and they barely make enough to not be on food stamps themselves. It’s an interesting choice we make in our world to talk about humanity without looking at the people who really actually offer the humanity on a regular basis.” One of Houston’s major HIV-prevention marketing strategies last year was to put up a few billboards around the city promoting PrEP, a daily pill strategy that, when taken routinely, prevents a user from contracting HIV. Young says Houston’s health department “works miracles with very little,” and had received money from the Centers for Disease Control and Prevention that it then gave to AFH to finance the public education campaign. Eva Thibaudeau-Graczyk, program director at the Coalition for the Homeless, says one reason why LGBT youth aren’t highly informed about sexual health is a lack of sex ed—and a tendency to view sex as something people do, rather than a part of their health. ThibaudeauGraczyk adds that a “healthy or an accurate sexual health education” has been absent from the school system for far too long: “We don’t fund that in our public schools… I think we’re not raising young people with fluency.” “A young man called me once,” recalls Thibaudeau-Graczyk, sharing the story of a 19-year-old experiencing homelessness. “He grew up in foster care, struggled with mental illness, on and off with substance abuse, chose to [do sex work]. He called me and [had] tested positive. Someone was there to talk to him. He seemed pretty upbeat and educated [on HIV].” Three months later, when the teen left the care of a case manager, depression and isolation kicked in, and he tried to commit suicide. “You’re talking in these instances about meeting an entire spectrum and continuum of support and services,” Thibaudeau-Graczyk says about the importance of reworking budgets for the benefit of case managers. “It’s not just getting you in the door to get tested, it’s not just when you find out. That emotional and mental piece is the people side of things. And that’s what we discount when we only fund medical case managements.” Another factor creating overarching HIV stigma is how medical professionals handle discussions. Following Hurricane Harvey, the city set up a separate system for poz people seeking medication. Although well-intended, it virtually segregated people with HIV, as if their chronic condition was entirely different from other chronic conditions, like diabetes. “One of the reasons we have trouble getting people on PrEP is we have doctors not willing to prescribe it because they don’t understand, and don’t know that they can [prescribe it],” Young says. “It’s not that complicated and… you don’t need to be an infectious disease doctor anymore.” Given that Houston represents a buckle in the Bible belt, local religious ideology tends to promote LGBT and HIV stigma. For the 60 percent of youth that have been kicked out of their homes, sharing their sexual identity has often created more harm than good. Thibaudeau-Graczyk says, clients might want to avoid identifying as LGBT at many local agencies with more conservative religious approaches than the Coalition for the Homeless, Salvation Army, or AIDS Foundation Houston. (Though the Salvation Army was founded by Christian evangelicals, in recent years it has made efforts to be more LGBT inclusive and the organization has become a leader in caring for those who are HIV-positive. It’s also the largest provider of drug and alcohol recovery services in the country.) Reaching LGBT youth remains a significant goal for Houston organizations, and as many case managers know, it all comes from being present and letting queer teens know someone cares. As Eckert points out, “People are harmed in relationship and people are healed in relationship. Without the relationship there is no healing.” HIVPLUSMAG.COM

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R E S I S TA N C E B Y S AVA S A B A D S I D I S

NEW DRUG MAKES SWITCHING MEDS EASIER THE U.S. FOOD and Drug Administration has approved a new HIV drug specifically for poz folks who are switching HIV meds. ViiV Healthcare’s Juluca is the first two-drug regimen approved that combines dolutegravir and rilpivirine, and the first not to include a nucleoside reverse transcriptase inhibitor (NRTI). Juluca is only approved for those who are already in treatment and undetectable, but are currently seeking to switch medications. According to ViiV, it is indicated as a complete regimen for maintenance treatment of HIV-1 (the most common strain) in adults who have suppressed viral loads (less than 50 copies per mL), and have been on a stable antiretroviral regimen for at least six months with no history of treatment failure and no known resistance to the individual components. Financial analysts from data analytics company Global Data are already projecting sales of Juluca could exceed $2 billion by 2025, due to the fact that it’s the first HIV regimen of its kind. Current antiretroviral therapy regimens contain at least three drugs to reduce the development of drug resistance. All previously approved regimens have relied on a backbone of two NRTIs, but those drugs have been associated with what Global Data calls an “increased risk of adverse events associated with cumulative ART exposure, particularly renaland bone-related issues.” Juluca instead relies on the integrase strand transfer inhibitor dolutegravir and the non-nucleoside reverse transcriptase inhibitor rilpivirine (from Janssen Therapeutics). This makes the drug useful not only for those who may have developed resistance to NRTIs like Truvada, but additionally for anyone who also has liver- or bonerelated medical issues. “Limiting the number of drugs in any HIV treatment regimen can help reduce toxicity for patients,” Debra Birnkrant, M.D., director of the division of antiviral products in the FDA’s Center for Drug Evaluation and Research, told End Points News. The FDA approval was based on data from two phase III clinical trials, which revealed that the two-drug regimen achieved viral

suppression as well as three- or four-drug regimens, and that adverse side-effects occurred infrequently. An unrelated 2016 study in Spain suggested there are many benefits to a two-drug combination, including the discovery that it might reduce the risk of cardiovascular disease and kidney problems linked to toxicities associated with the use of two NRTIs. Deborah Waterhouse, CEO of ViiV Healthcare, said in a written statement, “The FDA approval of Juluca marks an important milestone in our commitment to deliver innovative advances in HIV care by providing new treatment options that challenge the traditional approach to care. This is the start of a new era in HIV treatment. We are delighted to be able to provide the first twodrug regimen to physicians and people living with HIV in the U.S., to support the reduction of long-term ART exposure as they receive lifelong treatment for their chronic condition.” As Waterhouse suggests, expanding options for HIV treatments is particularly important because the increased longevity of people living with HIV means that poz people (starting with long-term survivors) must take medications for decades to remain virally suppressed. That can increase the likelihood of developing drug resistance or toxicities to the medications, which are both reasons to switch.

SHUTTERSTOCK

NEW FDA-APPROVED DRUG GIVES HOPE TO PEOPLE WHO ARE LOOKING TO SWITCH MEDICATION OR FIGHT RESISTANCE.

MARCH / APRIL 2018

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HIV TREATMENT CAN GET YOUR VIRAL LOAD SO LOW, IT’S UNDETECTABLE. GO FOR UNDETECTABLE.

There is no cure for HIV, but being undetectable helps protect your health. See how. Watch “The Goal of Undetectable” at HelpStopTheVirus.com © 2015 Gilead Sciences, Inc. All rights reserved. UNBC1853 03/15

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4/15/15 2:24 PM 11/29/17 11:46 AM

LONG-TIME SURVIVOR

Diplomatic Detours BY M I C H A E L VA RGA

n 1995, I was working at the American Consulate General in Toronto. I’d been an American diplomat for a decade and was scurrying from the stock exchange to meetings with bank chiefs and political party leaders. Evening receptions at other consulates and cinema premieres were the norm, while reporting to leaders in Washington, D.C., about the Canadian economy filled my waking hours. When I wasn’t working, I began writing a short story that won first prize in a competition sponsored by The Toronto Star. It was a heady time and I was having a lot of fun, but as a man diagnosed with HIV, I was also tired and starting to run on fumes. One day my physician asked me the key question: “What’s the goal here, Michael? Is the plan to just keep working until you die at your desk?” My T-cells had dropped to under a hundred. I wasn’t in denial about my health; I just wasn’t paying attention to it. I let work rule my day. As the only economic officer at the consulate, I had to keep doing the job. “There’s no one else,” I would say. I was diagnosed with HIV in the 1980s, but I didn’t let it rob me of aspirations to travel the world and make a difference as a diplomat. During a stint in the Peace Corps in the 1970s, in the Central African country of Chad, I’d gotten a taste of how challenging and rewarding international work could be. In the Foreign Service, I served in Dubai, United Arab Emirates; Damascus, Syria; and Casablanca, Morocco. I had also worked in both Washington, D.C. and Miami. I felt like I was in the middle of crafting U.S. foreign policy. Full of my own self-importance, I had not really thought about how AIDS complications might take me out. 20

“Your disease is very advanced. Your fatigue is only the tip of the iceberg,” my physician added. She flipped through my lab reports and held up a chart showing how my T-cells had declined in the single year I’d been assigned to Canada. It was a sharp downward slope. “Michael, you’re very ill.” Her words seared into my consciousness. The chatter that normally circled inside my head about economic trends from bank economists quieted to a stunned silence. The doctor’s words still hung in the air:

COURTESY MICHAEL VARGA

This long-term survivor was given an expiration date decades ago, but the American diplomat was too busy making the most of his life.

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“Michael, you’re very ill.” I looked away at the HIV poster above her desk. It was a colorful print, with big block letters that read: AIDS DOESN’T WAIT. “I encourage you to think about taking time for yourself. Do what’s important to you while you still have a life to enjoy,” she continued. I pushed her to give me an estimated life expectancy. She fought me on it. “Every case is unique. We cannot know the probability that your life will be longer or shorter than the statistical averages.” After refusing to leave until I heard an answer, she reluctantly said, “Eighteen months. Based on what’s available now for treatment and your lab numbers, my reasonable guess is you can expect to last until about April 1997.” Now I knew how long I had to work on the book I’d meant to write, and finish it before I became too ill to care. After all, this

COURTESY MICHAEL VARGA

ABOVE: Former diplomat Michael Varga (above left) with former president Bill Clinton, in the 1990s. LEFT: Michael Varga today, decades after his doctor thought he’d die of AIDS complications

was before new treatments came along that suppressed HIV to such low levels that it became impossible to transmit. My friends were dying rapidly, progressing from a first hospitalization to death in mere months. I left Toronto a month later as a sudden retiree. I moved to the beach in Cape May, N.J., where I wrote every day. My routine was strict: I rose at 5 a.m., wrote until noon, ate a quick lunch, took a walk by the ocean, and usually managed an afternoon nap. I kept it up until I had written everything I wanted to say. Then all I could do was wait for April 1997. To stay engaged, I volunteered at the local nursing home, each week lugging in my accordion to play a few tunes for the residents. I played all of the standards I knew: “The Beer Barrel Polka,” “Lady of Spain,” and “The Caissons Go Rolling Along.” Week after week, I showed up and played the same tunes. Some clapped along with the beats while others

snoozed. I thought I was getting passable reviews from their phlegmatic attention. One afternoon, a bald-headed man yelled, “Play the ‘Beer Barrel Polka’ one more time and I’m going to thrash you with my cane!” That opened the floodgates. Soon all of the residents were shouting. “Learn something new, for God’s sake!” “Kill that ‘Lady of Spain.’” “Let those caissons roll you right out of here.” I hadn’t learned new songs. I thought of myself as a short-timer—just like them— waiting at death’s door to be summoned for my final interview. But the revolt from the residents shook me up. As I sat mutely before them, my right fingers pausing over the treble keys, it hit me: April 1997 had come and gone. It was May, and I was still here. My health wasn’t great, but it wasn’t exactly like my internal organs were shutting down. The doctors had re-jiggered the cocktail of drugs I was taking, and I’d gone from 48 pills per day to 40. Progress! Regardless, I still lived every day with the expectation that my days were numbered. Yet, I also lived with a richer horizon. Maybe the bad juju wouldn’t hit until 1998? Could I even imagine surviving to 2000? Bonus time meant I had exceeded the life expectancy I had been given in Toronto, but there was no way to know what the new limit might be. My focus had to shift to thinking about not so much how the end would come, but rather how to live with new vitality and a hope to do more. At this time, my parents lived in Florida and in July 1997, my mother suffered a fatal heart attack. My dad was lost without her after 53 years of marriage. Although I had doubts about my ability to look after an 80-year-old man, I invited him to live with me. My other siblings were all working, so it seemed natural I would be the one to take him in. The novel was finished, and although no publishers were at my door, I welcomed helping my dad as a new focus. I was shocked to see how much my father had slowed down. He slept a lot and sat for hours in front of the television, but he didn’t have a curiosity about life—or about learning new things—that had been hallmarks of his adulthood. He had trouble making decisions and seemed lost. He would clutch my hand when we went to the grocery store and as I pushed the cart up the aisles, he would grip the side as if he was afraid he might lose me. He lasted only eleven weeks before succumbing to a fatal heart attack. HIV treatment in the late 1990s was improving, but I had had the virus a long time and at one point my liver began to shut down. The doctors wanted to hospitalize me but I told them that if this were really the end, HIVPLUSMAG.COM

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paid for all of my burial expenses, bought a grave, and even installed a headstone that lacked only the date of my death. But before I knew it, my liver recovered. More bonus time. In 2003, I won a trip to Ireland and invited Paul, my eldest brother, to join me. He hadn’t been abroad since his days as a soldier in Vietnam. I wanted him to have an overseas experience of getting away from the worries of life with four children and too many bills. We had a great time posing on the Cliffs of Moher, freezing on the Dingle Peninsula, exploring Limerick. Four days after we returned home, he collapsed. A priest administered the Last Rites to him in the hospital and at the age of 58, he died. Losing him was a terrible shock, but the gift of his last week on earth where we, two adult siblings, got to renew our bonds in the deepest and most fun manner is a treasured memory. My brother’s death jolted me. After all, since I had been the one to retire in 1995 with a death sentence, I had expected I would be the next to go. Yet by 2004, I had buried both my parents and my eldest brother; my family was shrinking. I was still expecting AIDS to catch up with me sooner rather than later. All of the HIV-positive friends I had known in the 1980s and 1990s were long gone. I often wondered, Why me? Why am I getting more bonus time? After Paul died, I learned that my sister, Rita, who worked for the Centers for Disease Control and Prevention in Atlanta, and lived alone, was having her own health issues. I would frequently meditate and hear my brother speak to me. His voice would come through clearly: “Michael, our sister needs help. She’s sicker than you know. She has no one. Stop promenading up and down the beach and make yourself useful. You’re not dead yet!” I didn’t want to hear that message. I liked staring out at the Atlantic Ocean. I liked having only my own health to fret over and no one else to worry about. I was content in my little egotistical dance of waiting for death. But Paul would not be quiet: 22

FROM TOP: Varga’s father, Wilson; the author and his dad; the burial plot and headstone Michael bought himself in the 1990s, when he expected to die.

“Rita needs you,” his voice would say. When I first informed my family of my HIV status in 1995, it was Rita who had uttered the words I needed to hear most: “Michael, whatever you need, no matter how difficult, I will be there for you. I love you.” She alone had embraced me at a time when the stigma of AIDS had been most pronounced. I could never forget her loyalty. So, I put my house up for sale and moved to Atlanta in 2005. I got rid of many of my possessions— including my beloved accordion. Rita was still working for the CDC, but her body was failing. Every three months or so, she would need to go to the hospital. Sometimes it was her heart, other times it was her diabetes, or her asthma. Each time, I was there to hold her hand, talk to the doctors, and look after her. Some months she was fine and we had great fun making trips to Tybee Island, Ga., and to Destin, Fla. Other months, the doctor visits seemed never-ending and my anxiety grew. I developed insomnia and started suffering from sleep deprivation. I fell into a deep depression, and although I seemed to be able to harness my wits when Rita was hospitalized, it was clear the constant stress was taking its toll on me. My already weak immune system was being pummeled by the onslaught of so many worries. No other family members offered to help us. I felt alone with my responsibility. My friends said I was making a tragic error in judgment. They said I needed to maintain my own health and make it a priority so that I could continue to be a good caregiver for Rita. I knew they were right. Professional therapists helped me recover from my depression. They showed me I had to strike a balance in being available to assist Rita, while being equally committed to keeping my own health at its optimum: exercising regularly, eating healthily, and remaining engaged with others beyond my sister. One year, Rita had a stroke. Another year she had three heart attacks. My health issues, including triple bypass heart surgery in 2009, were not nearly as problematic as

COURTESY MICHAEL VARGA

LONG-TIME SURVIVOR

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“

LONG-TIME SURVIVOR

MICHAEL, WHATEVER YOU NEED, NO MATTER HOW DIFFICULT, I WILL BE THERE FOR YOU. I LOVE YOU. —RITA

”

COURTESY MICHAEL VARGA

CLOCKWISE FROM LEFT: Varga in Dubai; at the State Department; awards in Toronto in ‘90s; and ziplining Costa Rica in 2017

hers. Despite all of these challenges, like the short week in Ireland with Paul, I was fortunate as an adult to spend so much quality time with my sister. That’s a gift I never expected, given my doctor’s warnings in Toronto. Rita was a fighter. Despite doctors predicting her imminent death many times, each time she came through—even thrived. But the magic ran out in December 2014 with a fatal heart attack. Like many long-term survivors of HIV, I’m not sure why I have endured. I know so many who didn’t have the opportunity to grow old. But remembering them, remembering how much they were cheated of life by a virus that we understand better today, reinforces the idea that we must continue to take on

new missions, to be of service, and to tell our stories. We demanded that doctors give us a timeline, yet life itself intervened to give us mysterious bonus time. Back in Toronto, the poster on the doctor’s wall said: AIDS DOESN’T WAIT. For some of us, the disease has kept its distance and there is only gratitude for the way medicine has helped us to have a life we never expected. One day, I know it will end. But for now, I’m going to keep looking for the next mission. In the meantime, I have started visiting pawnshops looking for a used accordion. I want to find out if I still remember how to play “The Caissons Go Rolling Along.” I might even try to learn a new tune or two. Here’s to more bonus time.

Michael Varga’s Peace Corps novel, Under Chad’s Spell, is available at Amazon. (MichaelVarga.com)

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LONG-TIME SURVIVOR

This is Her Fight Song

Born with HIV, this teenager’s resiliency and activism are inspiring others.

e often think of long-term survivors as middle-aged men and women facing their approaching golden years. But there are another group of people who have been living with HIV for decades—those who were born HIV-positive. Canadian Ashley Rose Murphy is one of those frequently forgotten: she has been living with HIV since the day she was born in 1998, to a drug-addicted mother, but she’s never let it slow her down. “The way I see it, I don’t look to my HIV as being a burden or something that I wish had never happened because, without it, I don’t think I’d be the person I am,” Murphy told A Plus—the positive media outlet founded by Ashton Kutcher and run by Chicken Soup for the Soul folks—last November. She shared a similar sentiment in her 2017 TEDx Talk that went viral for this encouragement: “Don’t be normal. Normal is boring. Be extraordinary!” “Every time someone emails me and tells me that they used my TEDx Talk to break the ice and disclose to a potential romantic partner or a friend, that makes my day,” the 19-year-old activist says now. “I’ve had it happen many times and each time it’s so gratifying. To have people finally be able to disclose and be accepted and thank me for helping them is the greatest thrill.” Murphy says she knows “what discrimination feels like. That sting of rejection. To even be able to help one person feel the freedom that comes with living openly and not caring what others think of your status is empowering.” The resilient HIV-activist is now in her second year of college, where she admits, “it’s hard work keeping up with school and maintaining the advocacy work that I do. Lack of sleep, rushing all the time, side effects of medications—takes a toll on my health. It took me a month to get over a very nasty cold at the beginning of last year, and several weeks after that to regain my strength. 24

Staying healthy and taking care of myself is a challenge. My viral load is undetectable but my CD4 numbers have always been low.” Indeed, her HIV had already progressed to HIV stage 3, better known as AIDS, before she was even 6 weeks old. But the tiny baby girl had already proven herself a fighter. According to a community newspaper from her Canadian hometown of Ajax, Ontario, the infant was almost killed in an accident when she was 3 weeks old. Also born with mild cerebral palsy and Fetal Alcohol Syndrome, Murphy has said she was put on a respirator and into a medically-induced coma in an effort for her body to heal as doctors fought the virus. Murphy says she weighed less than 4 pounds at the time. “But 3 pounds of that was attitude,” she once wrote in a Poz essay. “I fought to live and they fought to save me. Just before I turned 6 months old I was removed from the respirator and placed with my foster parents. I weighed only 8 pounds, 3 ounces. My skin was translucent. Most of my hair had fallen out. My nails had stopped growing and I was very frail. Children’s Aid told my foster parents that I only had a few weeks to live and was being placed with them for palliative care.” Kari and Don Murphy weren’t just up for that challenge: the couple eventually raised 10 kids, eight of whom have special needs. “I guess that is part of the reason that I grew up confident enough to live openly with my condition,” Murphy wrote. “We all had some disease or disability. Most of us have lost one or both of our birth parents, and most had drug and alcohol exposure in utero.” At age 5, Murphy still weighed just over 20 pounds (a healthy weight for a one-year-old) and a permanent feeding tube had been inserted through her abdomen, where it remained until she was 9. Murphy’s parents first told her she was living with HIV when she was 7. Afraid of the stigma and discrimination she might face, they warned her not to tell anyone. She didn’t heed their advice. Looking back, Murphy wrote, “I knew I hadn’t done anything wrong, so I just started telling people.” “I live completely openly with HIV and have since I was 7 years old—before I really understood why my parents implored me to stop telling people,” Murphy admits. “I was ostracized, not allowed to walk on a neighbor’s lawn or play with their

KARI MURPHY

By Jacob Anderson-Minshall

MARCH / APRIL 2018

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TEENAGE BADASS (Left): Ashley Rose Murphy has no time for HIV shame— and encourages other people to feel the same

COURTESY KARI MURPHY

A LIFE WELL LIVED (This page, from top): Murphy with her mom Kari Murphy; at just 5 months old with AIDS and not expected to live; and Murphy’s senior year high school photo (2015)

children, rejected by boys I liked, had parents call and try to get me uninvited to a birthday party.” The collegiate activist says her first taste of stigma came when she was just a baby. “I had been in a foster home for two weeks as a newborn and when that foster mom found out I had HIV she refused to come visit me in the hospital while I lay in a coma for three and a half months—even though she was still paid to be my foster parent—and when I was to be discharged for palliative care when I was 6 months old, she hung up on the social workers who called. That was truly a blessing though, because after more than 200 phone calls and ‘no’s’, they finally reached my mom who said ‘yes’ and that saved my life.” It was Murphy’s own tenacity and transparency that inspired her to be a vocal activist, and she has been publically speaking about being HIV-positive ever since. More recently Murphy reached out to the Elizabeth Glaser Pediatric AIDS Foundation and “asked if I could be of service to them.” The nonprofit organization (PedAIDS.org) is dedicated to preventing children from becoming HIVpositive, and to eliminating pediatric AIDS through research, advocacy, prevention, and treatment programs. Established in 1988, it was later named in honor of the founder, Elizabeth Glaser, who was one of the first HIV-positive moms to speak openly about poz children, after two of her own contracted the virus. Her son Jake Glaser, now in his 30s, continues to support EGPAF’s now global efforts. After meeting with the organization’s leadership in 2015 at the International AIDS Conference in Vancouver, Canada, Murphy began serving as an ambassador for EGPAF, a role she still fulfills today. “I use my social media platforms to share EGPAF’s message, have written a couple of blog posts, [and] wrote a piece for the HuffPost.” She’s also attended events in Los Angeles, such as A Time For Heroes, and like the teenage girl she is, she danced all night at UCLA’s 24-hour dance marathon. Murphy is also involved with #GenEndIt (GenEndIt.org), a campaign aimed at educating young people about HIV and empowering them to know their status and advocate for ending AIDS by 2030. Through the campaign, Murphy has gotten a chance to work with actress Charlize Theron, Tom Shoes founder Blake Mycoskie, YouTube sensation Lilly Singh, and Bono’s (RED) foundation. The teen activist has received a long list of awards for her work, including Prince’s Youth Service Award, International Women of Courage Award, Ajax Youth Citizen of the Year, The Queen’s Young Leaders (runnerup), Inspire Awards Charles Roy Award for Activism in HIV/AIDS 2015 (presented by the Toronto, Canada LGBT community), and the one she says means the most, a 2016 Terry Fox Humanitarian Award. “It’s a $28,000 scholarship, which means that I will graduate from university with no student loan debt,” Murphy acknowledges, but explains that’s not why the honor means so much to her. “Terry Fox is a hero. I’ve known about Terry Fox and his journey since before CONTINUED ON PAGE 29

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C H I L L . U S • # C H I L L • @ C H I L LT H E M A G

LONG-TIME SURVIVOR

ALREADY A CELEB (Left): Murphy and Oscar-winning actress Charlize Theron, another HIV activist, take the stage at WE Day California. WE Day is a youth activist celebration that began as one event a decade ago, and now is a series of 19 stadium-sized events taking place across the U.S., Canada, the U.K., and the Caribbean. According to WE Day organizers, 200,000 students attended WE Day (WE.org) last year, all young people focused on creating change in their lives and around the globe.

FREDERICK M. BROWN/COURTESY OF WE DAY

CONTINUED FROM PAGE 25

I even knew I was HIV-positive. He was just a kid, 19—same age as I am right now—when he attempted to run across Canada on one leg. He had a prosthetic leg and was constantly in pain. He made it halfway across Canada, 3,300 miles, when he became gravely ill as the cancer had spread to his lungs. He died shortly after. Since his death over $750 million has been raised to fight cancer in his name. Many people are alive solely because of his efforts. To be chosen by his family as worthy of representing his name was such an honor. I was shaking and crying when I found out. It was incredibly humbling.” Murphy may not have walked across Canada, but the activist has traveled around the world, including visiting Kenya, where she helped build schools for WE Charity’s Free the Children program.

With the goal of “becoming more involved in the global fight against HIV,” Murphy recently launched OutLoud on HIV, which she describes as “a student-led, student-focused initiative whose aim is to educate youth about HIV.” OutLoud on HIV provides information, testing, condoms, and counseling. “It’s in the beginning stages,” Murphy says. “But so far, we have eight universities from Canada, several African nations, and one Caribbean nation who have expressed interest in implementing the program in their own schools.” Never one to turn down a fight, Murphy adds, “UNAIDS wants me to be more involved with their work…. I have done several things with them as well and I look forward to doing more. Really, in any way I can help, I am interested. I believe we have the power to end AIDS if we work hard and don’t let up.” HIVPLUSMAG.COM

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SHUTTERSTOCK

with Dr. Frank Spinelli and Gary McClain

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LONG-TIME SURVIVOR

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LONG-TIME SURVIVOR

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LONG-TIME SURVIVOR

Things Your Doctor Wants You to Know About Aging With HIV Dr. Frank Spinelli answers the most common questions he gets.

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s a doctor, I’m well aware that the estimated life expectancy of people who are first diagnosed with HIV at age 30 is now 75 years old—a huge leap from the 1980s, when those with the virus were given as little as a few weeks to a few years to live. Fortunately, a lot of people outlived those dire projections, and many of them are now long-term survivors who continue to thrive as they age. The development of highly active antiretroviral therapy in the 1990s is credited with the miraculous extension in life expectancy that people with HIV enjoy today. But it also means that HIV-positive people can expect to be on antiretroviral medications for 40 years or more. According to Sage, the country’s largest organization dedicated to improving the lives of older LGBT adults, “By 2020, more than 70 percent of Americans with HIV will be 50 or older.” DOES HIV ACCELERATE THE AGING PROCESS? Many researchers believe that aging is accelerated in HIV-positive people due to the presence of the latent virus, which is not completely eradicated by antiretrovirals. The good news is that people living with HIV are living longer, healthier lives if their viral loads are suppressed with these drugs. However, they may still develop age-related comorbidities. And, for some people living with

HIV, certain age-related health conditions might arise at a younger age. ARE THERE SUPPORT ISSUES I NEED TO BE CONCERNED WITH? Older people living with HIV face more social isolation and loneliness than others their age. HIV stigma is still prevalent, even among older men and women living with the virus. By and large, older HIV-positive people feel disenfranchised not only from their families but also from younger men and women within the LGBT community. Stigma may negatively impact a person’s quality of life and self-image, and may prevent them from seeking counseling. It is important for older people with HIV to connect with HIV support groups specifically geared toward other poz people their age. You can find support groups through your provider or by contacting a local HIV service organization. AS A PERSON LIVING WITH HIV, WHEN SHOULD I GET SCREENED FOR CANCER? The United States Preventive Services Task Force recommends the following: •

Men and women at average risk should be screened for colorectal carcinoma starting at age 50, using fecal occult blood testing (FOBT), flexible sigmoidoscopy with or without FOBT, or a colonoscopy. Office-based digital rectal examination plus FOBT should not be used.

•

Women 50 and above at average risk should be screened every one to two years for breast cancer using mammography. HIVPLUSMAG.COM

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LONG-TIME SURVIVOR

Sexually active women should be screened every three years for cervical cancer using the Papanicolaou (“Pap”) smear. (The same applies to transgender men who still have a cervix.)

•

There is not adequate evidence to recommend for or against screening men or transgender women for prostate cancer.

These recommendations may be applied to HIV-positive patients with CD4 counts of >350 cells/µL or completely suppressed HIV RNA. For patients with lower CD4 counts, screening should be discussed in the context of the patient’s prognosis, preferences, and health goals. WHAT ARE THE CONSIDERATIONS FOR TREATING OLDER PEOPLE WITH HIV USING ANTIRETROVIRALS? Antiretroviral therapy is recommended for all people with HIV regardless of CD4 count. Treatment is important for older individuals because they have a greater risk of developing serious non-AIDS-related complications. Older individuals may experience more adverse drug reactions than younger individuals with HIV. Healthcare providers should closely monitor bone, kidney, metabolic, cardiovascular, and liver function. Older people living with HIV are more likely to be on multiple medications for comorbid conditions. The potential for drug34

on-drug interactions should be assessed routinely by your healthcare provider. It’s a good idea to keep a list of all your medications, including prescription drugs, over the counter medicines, and herbal and vitamin supplements. Keep your doctor up to date on any changes and have them reconcile your list with the list in your electronic medical record. DOES AGING WITH HIV PUT ME AT GREATER RISK OF GERIATRIC SYNDROMES? According to several studies, frailty is a syndrome of decreased physiological reserve associated with an increased susceptibility to falls, worsening mobility, and loss of independence. Aging and frailty are complex. There are numerous confounding factors in people living with HIV—including sex, race, education, and employment. Bone fragility in older people living with HIV can lead to fractures, which increase frailty and muscle wasting and can reduce an individual’s functional capacity. These frailty-associated conditions may pose a threat to an individual’s day-to-day living, making it difficult for them to run errands, socialize, or attend medical appointments. Some clinicians believe that targeted exercise programs to increase physical activity and improve endurance and strength should be evaluated to improve the lives of people living with HIV.

DR. FRANK SPINELLI, MD, is a physician living in NYC. He is the author of The Advocate Guide to Health and Wellness and the host of Dueling Doctors. (@SpinelliMD)

SHUTTERSTOCK (COUPLE), COURTESY FRANK SPINELLI

•

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LONG-TIME SURVIVOR

Most Common Questions Therapists Get From Poz People Over 50 Plus magazine’s mental health editor, Gary McClain, talks every day about HIV and aging, fielding questions from long-term survivors. Here’s his advice.

I’M DOING GREAT NOW, BUT I WORRY MY HEALTH COULD GO SOUTH SUDDENLY IF THE MEDS STOP WORKING. HOW DO I STOP BEING ANXIOUS ABOUT THE FUTURE? It’s only human to want to know, and be in control of, your future. What I encourage you to do is to take life one day at a time, which starts with taking care of yourself each and every day. Start the day focusing on something you are grateful for. Review your strengths and coping skills. Stay connected with your support system. Accept that you can only know what you know. Power up to face today, and you will be that much better prepared for the road ahead. I DON’T HAVE VERY MANY FRIENDS. HOW CAN I BUILD A SUPPORT NETWORK? Humans are not meant to be alone. As we get older, it’s important to have people around us, and I think it is also important for people living with HIV to have support. Are there acquaintances you could reach out to? Have you looked into local HIV support organizations? Depending on your age group, maybe a senior center, or an organization like Sage? How about Meetup.com? Maybe an adult education class? There are lots of people out there who want to make a connection. Finding them will take some effort on your part, but it’s worth it.

SOME DAYS I FEEL SAD ABOUT MY LIFE. A LOT OF THAT IS RELATED TO MY HIV DIAGNOSIS. WHAT CAN I DO? Feeling sad sometimes is part of being human. The first advice I would give you is to not pretend you aren’t feeling sad, nor to try to make your sadness go away. Fighting your feelings only makes them more intense as they grow and, over time, express themselves in a way that may have a negative impact on your wellness, and lead to stress. Sadness brings us back in touch with that sensitive spot we hide from others, so let yourself feel, and talk about your feelings. When you own your sadness, you also are reminded of the sadness that others experience, and how we all suffer. The result will be more patience and sensitivity to what others are dealing with—that’s compassion. Recognizing and acknowledging the sadness of life also helps you to be more aware of the joys of life, big and small. I THINK I AM AT PEACE WITH MY HIV DIAGNOSIS, BUT I STILL FIND MYSELF THINKING ABOUT HOW I LET THIS HAPPEN. IS THERE A WAY TO STOP FEELING SO ASHAMED? You are certainly not alone in feeling this way. As I always say to my clients, you can’t go into instant replay and change something that can’t be undone. Spending time wishing things were different will only keep you stuck in the past. Sit down with someone HIVPLUSMAG.COM

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I WANT TO FALL IN LOVE, BUT I’M OLDER AND FEEL LESS ATTRACTIVE THAN I USED TO. MY HIV STATUS MAKES ME FEEL LIKE DAMAGED GOODS. IS IT TOO LATE FOR ME? Having a chronic condition doesn’t mean you are a walking medical diagnosis. You are still a human being with a multitude of talents, interests, qualities, hopes for the future and, yes, a few interesting quirks. Look at

yourself with a wide-angle lens that includes everything you bring to a relationship. Be a friend to the people you care about, be open and generous, and enjoy the love you already have in your life. Be yourself, enjoy your life, and follow your passion. You might discover that when you’re simply enjoying your life for what it is—without the agenda of having to find that one true love—you are so interesting and attractive that all kinds of opportunities to meet new friends and potential love interests, will present themselves. To paraphrase RuPaul, we have to love ourselves first. 36

I JUST LOST A CLOSE FRIEND. IT’S A REMINDER OF HOW MANY I LOST DURING THE AIDS CRISIS. I'M AFRAID I'LL BE GOING THROUGH SOMETHING LIKE THAT AGAIN; WATCHING MY FRIENDS DIE. HOW CAN I HANDLE THAT? It’s hard to lose people we care about. As we get older, loss becomes a part of life. But having gone through the AIDS crisis, as did I, I can sure understand why the loss of a friend would have a special meaning for you as you contemplate the losses ahead. One of the lessons I learned, as I suspect you did too, is that life is random. Loving and losing people is a bittersweet truth of life. Time spent with people we love is precious. So make the time. Honor your relationships with acts and words of kindness. Create beautiful memories that will be a comfort for you in the days ahead.

I FEEL GUILTY ABOUT GETTING TO LIVE SO LONG WHEN MY FRIENDS WHO DIED IN THE AIDS CRISIS DIDN’T. WHY DID THEY DIE AND NOT ME? This is a question I often talk about with my clients. The simple truth is that it’s unanswerable. Life unfolds as it unfolds. I encourage you to live your life to the fullest. Be your best self. Be a loving and supportive friend. Give back. And always be grateful. That’s how you can honor the memories of those who were not as fortunate. CONTINUED ON PAGE 38

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you trust—an objective friend or a trained listener—and talk about the shame you’re feeling and the guilt, anger, and fear that go along with it. Talk it out, and when you find your thoughts drifting into the shame zone, shift your attention from the rearview mirror to what’s possible in the present moment. Show yourself some compassion. Get busy living your life!

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10 3 12 1

years. drug classes. treatment failures. life to live.

320-01-08/17

Have you experienced multiple HIV treatment failures? It could be HIV drug resistance. And together, we can do more about it.

Ask the right questions; start the conversation. RethinkResistance.com

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WHEN I GOT MY HIV DIAGNOSIS, I GRABBED ONTO WHAT I COULD CONTROL, LIKE MY JOB AND THE GYM. EVERYTHING ELSE, INCLUDING MY FRIENDS, TOOK A BACK SEAT. HOW DO I GET MY LIFE BACK IN BALANCE? Balance is a tough nut, especially if you think of balance as half work and half play. Think of 38

balance as a journey, taken one baby step at a time. Be realistic. Start by scheduling time with friends, maybe once or twice a week to start. Schedule in some relaxation every day, even if it’s only a half hour in front of the TV. Find a way to do some volunteering, even once a month. Try something new to shake up your life. Maybe take an art class. Commit to having more balance. If you don’t schedule it and commit, it may not happen—so get it on your schedule. AT MY AGE, REJECTION HURTS MORE THAN IT USED TO. DOES IT EVER GET EASY? First, what does “easy” mean? Easier to say those words, or easier to deal with the reactions you might get? If easy is about dealing with the reactions, you might agree that disclosure doesn’t get easier. Every time you disclose, the situation is completely different. The key is to be mentally and emotionally prepared for whatever the outcome. Be confident in your own worth as a human being, and be aware of your coping skills. Take good care of yourself, physically, emotionally, and spiritually. Show yourself compassion and patience. Stay connected with your support network. Power up!

GARY MCCLAIN, PHD is a therapist, patient advocate, and writer in New York City, who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions. He's also the author of several books including The Complete Idiot’s Guide to Zen Living and Empowering Your Life With Joy. (JustGotDiagnosed.com)

SHUTTERSTOCK (COUPLE), COURTESY GARY MCCLAIN (MCCLAIN)

I THINK ABOUT MY LIFE: HOW I HAVE LIVED IT, AND HOW I SURVIVED. I FEEL LIKE I SHOULD BE DOING SOMETHING MEANINGFUL TO GIVE BACK. HOW DO YOU HAVE A MEANINGFUL LIFE? Meditate, contemplate, and pray. Take some time each day to nurture your spirit. Connect. Spend time with people you care about, who can listen, who can share the hard times and celebrate the good times. Reach out to someone who can use some support—be a listening ear, share some words of encouragement. Volunteer and share your skills and talents. Stay involved with activities that you can participate in and that give you joy. Practice being in the present moment, and not caught up in rehashing the past or worrying about the future. Be aware of the pleasures and possibilities that exist all around you.

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CHILL

BY ZACHARY ZANE

THREE’S COMPANY

SHUTTERSTOCK; COURTESY OF ZACHARY ZANE (ZANE)

I MAY BE A WALKING STEREOTYPE, BUT MY BEING POLYAMOROUS DOESN’T JUSTIFY YOUR BIPHOBIA. I USED TO dread coming out bisexual, mainly because of the interrogation that immediately followed: “When’s the last time you had sex with a woman?” or “How do you know you’re not just gay?” or everyone’s favorite (not really): “I used to say I was bisexual, too. You’ll get to full-gay soon, honey.” The double standard always bothered me. After all, gay men never need to justify or “prove” their sexuality, nor do straight men. But for whatever reason, bisexual men seem to have an obligation. Then I became a bisexual writer and activist, and it became my job to dispel stereotypes about bisexuality. There was one negative trope in particular I worked hard to disprove: the idea that bisexuals cannot commit to being in a healthy, monogamous relationship. We supposedly need to be actively dating or sexually intimate with multiple genders at any one time in order to feel “complete.” I actually stumbled into polyamory by accident. I had just broken up with my pansexual, gender-nonconforming partner of a year. She (her preferred pronoun) and I were monogamous. After we broke up, I found myself in the arms of many men, two of whom asked me to be exclusive. I told them the truth, which was that I couldn’t be. I was too exhausted from my last relationship to start a new one. The second man I told didn’t take it well. In fact, it brought him to tears. I decided not to date seriously because I was in no place to give myself emotionally. That is, until I met Jason. When we met, he told me upfront he had a wife and girlfriend that he lived with; along with a boyfriend and multiple other partners. I figured nothing could get too serious with him because he simply didn’t have the time. I could have my low-commitment boyfriend, which was all I thought I wanted. But, before I knew what

was happening, things between me and Jason turned serious and eventually I moved in with him and his wife. Jason and I are no longer boyfriends, but we remain close. I still identify as polyamorous, even when I’m single. Though I’m looking for love and commitment, I’m not looking for monogamy. I make that clear to everyone I go out with. While commitment and sexual exclusivity are often conflated, I believe the two are distinct entities. Commitment extends far beyond sex. If you believe that commitment is simply being sexually monogamous, your relationship is probably doomed to fail. Commitment is about being there for your partner(s), emotionally and physically. It’s also about compromise. It’s about curbing your desire to say “I told you so” when your partner royally screws up. It’s not about who you do, or do not, have sex with. After embracing the fact that I was polyamorous, I was left in a sticky situation. Not only did I become the stereotype I was trying to avoid, but the reactions I received for coming out polyamorous were even worse than the ones I’d gotten for coming out bisexual. Rather than claiming polyamory isn’t real or attempting to somehow “prove” to me I’m not actually polyamorous, people would just judge me. They’d condescend. They’d think my love was less “pure,” and as a result would devalue my relationship with my partner(s). They’d also think I was being naive—that I was wasting my time because “there’s no possible way a polyamorous relationship could ever work out long term!” Or they’d think that polyamory is indicative of this greedy, immature, “having-your-cake-and-eating-it-too” personality that proved I wasn’t ready for a meaningful relationship. Before I knew it, I was back in a place where I was anxious to come out to folks, not as bisexual, but as someone who is bisexual and polyamorous. I hated the fact I had become the stereotype I’d worked so hard to disprove. Then I had the pleasure of interviewing a leading bisexual activist, Robyn Ochs. I told her some of my reservations about embodying this trope. That’s when she told me, “You are not responsible for upholding the bisexual brand. You need to live your truth. Besides,” she continued, “one person doesn’t mean all. There are plenty of bi folks who are in happy, monogamous relationships. I know I am.” She also made it clear that what I’m doing isn’t hurting anyone else. There’s nothing inherently wrong with being ethically nonmonogamous or being open about what you can offer someone and what you expect to get out of a relationship. In fact, that’s a very honest way to approach relationships. There’s something wrong, however, when we generalize about an entire group of people, or when we assume one person’s experience with their sexuality is representative of the entire group. Today, I’ve embraced the fact that I’m a walking stereotype, but that doesn’t mean I’m any less of an activist. It doesn’t mean that my voice no longer deserves to be heard. All it means is that I’m attracted to multiple genders and open to having loving and sexual relationships with more than one person at the same time. While that might not be your thing, it’s definitely mine.

Z AC H A RY Z A N E is a Brooklyn-based writer, speaker, and

activist whose work focuses on (bi)sexuality, gender, identity politics, relationships, and culture. He’s currently a contributing editor at Plus, The Advocate, and PRIDE; and has a weekly column at Bisexual.org. @ZacharyZane

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WOMEN LEAD THE CHARGE TOWARDS GLOBAL VACCINE Women are now the focus of two largescale HIV vaccine studies in Africa. BY JACOB ANDERSON-MINSHALL a viable HIV vaccine gained new ground with a study launched in Africa by Janssen Pharmaceutical Companies with support from the National Institutes of Health and the Bill and Melinda Gates Foundation. The first efficacy study for an investigational mosaic HIV-1 preventive vaccine, the trial (HVTN 705/HPX2008) will evaluate whether a potential two-vaccine regimen is safe and able to prevent HIV. Scientific American reports that the “mosaic technology” combines “immune-stimulating proteins from different HIV strains, representing different types of viruses from around the world.” “Our investigational vaccine is based on mosaic antigens that have been engineered using genes from a wide range of different HIV subtypes,” reiterated Dr. Johan Van Hoof, managing director at Janssen Vaccines

THE HOPE FOR

and Prevention, in a statement to the press. “The ultimate goal is to deliver a ‘global vaccine’ that could be deployed in any geographic region to help protect vulnerable populations at risk of infection.” The vaccine trial is also known as “Imbokodo,” the Zulu word for the stones traditionally used for grinding grain— and short-hand for a well-known proverb in South Africa: “Wathinta abafazi, wathinta imbokodo,” (which roughly translates to: “You strike the woman, you strike the rock,” but also incorporates the notion that women play a central role in the survival of their families). According to a Johnson & Johnson press release, the choice of the term pays homage “to the strength of women and their importance in the community.” Avert, an organization fighting the global HIV epidemic, reports that as of 2015 an average of 4,500 new HIV transmissions occur among young women in east and southern Africa every week, which is “double the number in young men.” Furthermore, the organization notes, in west and central Africa, 64 percent of new HIV infections among young people in 2015 were among women. It is these disturbing numbers that have researchers focusing their vaccine trials on women. The Janssen trial hopes to recruit 2,600 sexually active women aged 18 to 35 in five sub-Saharan African countries. Another vaccine trial (HPTN 077), by ViiV Healthcare, is already

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underway, enrolling 3,200 women in the region to evaluate using a longacting injectable version of cabotegravir as a vaccine, according to NAM’s AIDSMap. Janssen’s own proofof-concept efficacy study follows two earlier clinical trials, including the ongoing TRAVERSE study, which compares two regimens containing adenovirus 26 (Ad26) vectored vaccines. Plus previously reported that Ad26 (a vaccine that has parts of HIV in it to spur the immune system to fight the virus) was shown effective in suppressing viral loads in HIV-positive monkeys— even after treatment was discontinued. It could therefore also eventually lead to a functional cure for HIV. In this vaccine study, Ad26 will be combined with a protein, Clade C gp140, which, according to the study’s site, Imbokodo.org.za, is similar to a protein found on the surface of HIV, and also helps humans develop an immune response to the virus. In addition, the protein will be mixed with the booster aluminum phosphate (which is also used in vaccines for hepatitis A and tetanus). Results could take up to four years, researchers cautioned on the site. Still, as Johnson & Johnson’s press materials point out, for the first time in over a decade, two vaccine trials are ongoing at the same time. Both are raising new hope for longacting HIV prevention for women and men in Africa and beyond. “Developing a vaccine against HIV is a top priority and our best hope for a world without AIDS,” noted Dr. Paul Stoffels, chief scientific officer at Johnson & Johnson, in a company press release. “Finding an effective HIV vaccine to protect people at risk has been a major scientific challenge, but today there is new optimism that we can get there.”

BABY GOT BACK

FDA approves new HIV treatment for infants, including newborns. The Food and Drug Administration has approved the first ever treatment for HIV in newborns. The drug, Isentress, has been approved for infants from birth to four weeks old that weigh at least two kilograms (around four-and-a-half pounds). Isentress, produced and manufactured by Merck, was originally approved in 2007 when it became the first integrase inhibitor developed for HIV treatment in adults. The FDA’s latest approval authorizing the drug to be used on infants is based in part on the promising clinical study, IMPAACT P1110, which evaluated the safety of Isentress in HIV-positive babies as young as 48-hours old. So far, Isentress is approved as part of combination therapy in 112 countries for treatment of HIV in adults and adolescents. Of those countries, 69 have also approved its use in children over 2, and 33 countries have approved it for babies four weeks old and older. The drug is the only HIV treatment approved in the United States to be used on babies so young. The use of Isentress is not recommended in pre-term (premature) newborns or infants weighing less than two kilograms. “Because clinical research on the use of antiretroviral drugs to treat newborns with HIV-1 infection has been limited, few antiretroviral agents are approved for this population,” Dr. Eliav Barr, senior vice president of infectious diseases global clinical development at Merck Research Laboratories, said in a statement. “This achievement underscores Merck’s unwavering commitment to the development of treatment options for HIV-1.” Researchers warn that serious side effects have been reported including severe rashes, such as those associated with StevensJohnson syndrome, a hypersensitivity reaction that can be fatal. If severe rashes occur, immediately stop the use of Isentress. Parents are also cautioned to be especially observant and check in frequently with their doctor about their baby’s progress. —DAVID ARTAVIA HIVPLUSMAG.COM

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YOUR HEART’S NEW HELPER

A new drug is helping those living with HIV take control of their heart health.

them in “a pro-inflammatory state, much in the same way as people with rheumatoid arthritis. I think that there’s more appreciation that this inflammation predisposes people to more rapid progression and higher risk of atherosclerotic disease.” Due to this added cardiovascular risk, a more aggressive cholesterol-lowering therapy can truly be life-saving for people living with HIV. Another problem has been that many HIV medications, particularly protease inhibitors, increase the side effects of statins (which can include debilitating muscle pain). “These analyses add to the growing body of evidence that Repatha significantly and consistently reduces cardiovascular event risk across a spectrum of high-risk cardiovascular patients,” said Dr. Sean E. Harper, executive vice president of research and development at Amgen. “The proven efficacy of Repatha to help those with established cardiovascular disease at high risk for heart attacks and strokes reinforces the importance of achieving and maintaining a low LDL-C level.” All in all, great news for poz and HIVnegative people alike who have been dealing with these types of h e a r t i ss u e s — and another big scientific leap forward in helping people with HIV take control of their health and live long, happy lives. —DESIRÉE GUERRERO

SHUTTERSTOCK

dults living with HIV have nearly twice the risk of developing atherosclerotic cardiovascular disease than those who are HIV-negative. Thankfully, new data revealed at the American Heart Association’s Scientific Sessions late last year may help change that frightening statistic. Atherosclerosis (also known as “clogged arteries”) is a hardening and narrowing of the arteries that slowly blocks blood flow and is the most common cause of heart attacks, strokes, and peripheral vascular disease—which, together, are called cardiovascular disease. Five new analyses from the FOURIER study, conducted by research subgroups of the AHA, were presented at the conference. Research showed that people with the highest risk for cardiovascular events, such as heart attack or stroke, experienced the greatest clinical benefit from a new drug, evolocumab. Developed by the biotech company Amgen, and branded as Repatha, evolocumab is part of a new class of cholesterol-lowering medications called PCSK9 inhibitors, which have been successful in lowering LDL cholesterol (the “bad cholesterol” that can lead to plaque that clogs arteries) in the body to levels no previous medications, including statins, had been able to reach. These latest analyses show that LDL levels of participants with peripheral artery disease dropped a whopping 59 percent on evolocumab. The drug also reduced the risk of heart attack by 27 percent in other high-risk patients. “As we continue to look deeper into the data from the FOURIER study, we are able to identify subsets of patients that can derive even greater clinical benefit from intensive LDL-C lowering with evolocumab, in addition to what is achieved with statins alone,” said Dr. Marc Sabatine, a cardiovascular physician at Brigham and Women’s Hospital in Boston, professor at Harvard Medical School, and lead investigator of the FOURIER study. “These results offer additional ways for clinicians to tailor therapies for their patients to reduce the risk of recurrent cardiovascular events.” Research over the past several decades has consistently shown that lowering LDL cholesterol reduces the risk for heart attacks and cardiovascular disease. Traditionally, statins (HMG-CoA reductase inhibitors) were prescribed along with lifestyle changes (such as stopping smoking, eating healthier, and exercising) to lower LDL in highrisk patients. Now, researchers are focused on discovering new ways to lower LDL in those who have limited treatment options, including people living with HIV. Te r r y Fe rg u s o n , t h e U. S . cardiovascular therapeutic head at Amgen, explained to HIV Equal that poz people are more at risk for heart issues because the disease puts

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MIDDLE-AGED POZ FOLKS AT GREATEST RISK FOR BRIAN DISEASE

SHUTTERSTOCK

Risk of strokes, cognitive impairment, and dementia are up to five times higher for those living with HIV. Researchers in France have discovered a much higher prevalence of cerebral small-vessel disease (CSVD) among middle-aged HIV-positive people compared to the general population, reports NAM’s AIDSMap. Often called a “silent” disease because it can exist without obvious symptoms, CSVD is known to be a prominent precursor to other serious neurocognitive conditions like strokes or hemorrhages, as well as age-related cognitive impairment and dementia. Published in Clinical Infectious Diseases, the study found that poz people between 50 and 54 had nearly five times the risk for developing CSVD. While comorbidities that come with aging (such as hypertension) are known risk factors, it was previously unclear whether being HIV-positive raised these risks. However, other studies have suggested that people living with HIV may age faster than the general population. In this study, researchers conducted MRI scans on more than 600 people over 50, including 456 HIV-positive people who were all on antiretroviral therapy and undetectable. Results showed that 52 percent of poz participants were also living with CSVD, compared to 36 percent of their HIVnegative counterparts. Advanced stages of CSVD were found in 20 percent of the HIV-positive participants and 14 percent of HIV-negative participants. Investigators found that “the HIV impact differed according to age.” Overall, the risk for having CSVD increased with age. But with HIV-positive participants, researchers unexpectedly discovered that the youngest (those between 50 and 54) showed five times greater risk of having CSVD than their HIV-negative counterparts of the same age; while those between 54 and 60 were only three times more likely to have CSVD.

When researchers adjusted the findings to account for age, sex, alcohol use, blood pressure, lipids, and cardiovascular history, CSVD remained more frequent in people living with HIV than in the general population. “Our study results revealed a high CSVD prevalence among middle-aged [people living with HIV], despite ARTsustained immunovirological control,” the study authors commented, noting that even those whose HIV treatment had lowered their viral loads to undetectable levels are at risk for CSVD. “We confirmed classical risk factors, e.g. hypertension and advancing age, and identified a specific HIV-associated factor, the nadir CD4 cell count.” In other words, researchers discovered that those who previously had less than 200 T-cells were at a higher risk for developing cerebral small-vessel disease. Most of the HIV-positive participants were long-term survivors, with nearly two-thirds of the poz group having been diagnosed before the introduction of highly-effective antiretroviral treatment in the 1990s. That meant they became positive during a period where treatment didn’t exist or wasn’t very effective and therefore, many in the study had seen their CD4 cell count drop below 200 (which is the point where HIV typically becomes classified as stage 3, or AIDS). In light of the data, researchers say it’s more important than ever for “medical providers to search for CSVD in [people living with HIV], using a brief MRI.” Cerebral small-vessel disease is rarely diagnosed without the benefit of an MRI, and these results suggest doctors with HIVpositive patients over 50 should consider ordering the test for those who’ve previously had low T-cell counts.—DA HIVPLUSMAG.COM

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WHAT IS GENVOYA®? GENVOYA is a 1-pill, once-a-day prescription medicine used to treat HIV-1 in people 12 years and older who weigh at least 77 pounds. It can either be used in people who are starting HIV-1 treatment and 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. These include having an undetectable viral load (less than 50 copies/mL) for 6 months or more on their current HIV-1 treatment. GENVOYA combines 4 medicines into 1 pill taken once a day with food. GENVOYA is a complete HIV-1 treatment and should not be used with other HIV-1 medicines. GENVOYA does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking GENVOYA. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.

IMPORTANT SAFETY INFORMATION What is the most important information I should know about GENVOYA? GENVOYA may cause serious side effects: • Worsening of hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking GENVOYA, your HBV may suddenly get worse. Do not stop taking GENVOYA without first talking to your healthcare provider, as they will need to monitor your health. Who should not take GENVOYA? Do not take GENVOYA if you take: • Certain prescription medicines for other conditions. It is important to ask your healthcare provider or pharmacist about medicines that should not be taken with GENVOYA. Do not start a new medicine without telling your healthcare provider. • The herbal supplement St. John’s wort. • Any other medicines to treat HIV-1 infection. What are the other possible side effects of GENVOYA? Serious side effects of GENVOYA may also include: • Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking GENVOYA.

• 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 GENVOYA. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effect of GENVOYA 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 GENVOYA? • 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 GENVOYA 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 GENVOYA with all of your other medicines. • If you take antacids. Take antacids at least 2 hours before or after you take GENVOYA. • If you are pregnant or plan to become pregnant. It is not known if GENVOYA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking GENVOYA. • 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 GENVOYA, including important warnings, on the following page.

Ask your healthcare provider if GENVOYA is right for you.

GENVOYA.com

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GENVOYA does not cure HIV-1 or AIDS.

SHOW YOUR

POWER Take care of what matters mostâ&#x20AC;&#x201D;you. GENVOYA is a 1-pill, once-a-day complete HIV-1 treatment for people who are either new to treatment or people whose healthcare provider determines they can replace their current HIV-1 medicines with GENVOYA.

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IMPORTANT FACTS WHAT IS GENVOYA®? (jen-VOY-uh) MOST IMPORTANT INFORMATION ABOUT GENVOYA GENVOYA may cause serious side effects, including: •

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

This is only a brief summary of important information about GENVOYA® and does not replace talking to your healthcare provider about your • condition and your treatment. •POSSIBLE SIDE EFFECTS OF GENVOYA GENVOYA can cause serious side effects, including: •

• •

• • 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.

GENVOYA does not cure HIV-1 infection or AIDS. ABOUT GENVOYA GENVOYA is a prescription medicine used to treat HIV-1 in people 12 years of age and older who weigh at least 77 pounds and have never taken HIV-1 medicines before. GENVOYA can also be used to replace current HIV-1 medicines for some people who have an undetectable viral load (less than 50 copies/mL of virus in their blood), and have been on the same HIV-1 medicines for at least 6 months and have never failed IMPORTANT SAFETY INFORMATION HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements. What is the most important information I should

•

•know GENVOYA does not cure HIV-1 or AIDS. Ask your healthcare about GENVOYA?

provider about how to prevent passing HIV-1 to others. Do • NOT take GENVOYA if you: • Take a medicine that contains: alfuzosin (Uroxatral®), carbamazepine (Carbatrol®, Carnexiv®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), cisapride (Propulsid®, Propulsid Quicksolv®), dihydroergotamine (D.H.E. 45®, Migranal®), ergotamine (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), lovastatin ® ® (Altoprev , Mevacor ), lurasidone (Latuda®), methylergonovine Who should not take GENVOYA? (Methergine®), midazolam (when taken by mouth), phenobarbital (Luminal®), phenytoin (Dilantin®, Dilantin-125®, •Phenytek®), pimozide (Orap®), rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®), sildenafil when used for lung problems (Revatio®), simvastatin (Vytorin®, Zocor®), or triazolam (Halcion®). •

Take the herbal supplement St. John’s wort.

• •Take any other HIV-1 medicines at the same time.

•

What are the other possible side effects GET MORE INFORMATION of GENVOYA? •

This is only a brief summary of important information about

•GENVOYA. Talk to your healthcare provider or pharmacist • •

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

Those in the “Most Important Information About GENVOYA” section. Changes in your immune system. New or worse kidney problems, including kidney failure.

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, What I tell urine, my healthcare before darkshould “tea-colored” light-coloredprovider stools, loss of appetite taking GENVOYA? for several days or longer, nausea, or stomach-area pain. •The most common side effect of GENVOYA is nausea. These are not all the possible side effects of GENVOYA. Tell your healthcare provider right away if you have any new •symptoms while taking GENVOYA. Your healthcare provider will need to do tests to monitor your health before and during treatment with GENVOYA. •

BEFORE TAKING GENVOYA

•Tell your healthcare provider if you: •

Have or have had any kidney or liver problems, including

• hepatitis infection.

Have any other medical condition. Are pregnant or plan to become pregnant. • • Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. • •

Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-thecounter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that should not be taken with GENVOYA.

HOW TO TAKE GENVOYA

• GENVOYA is a complete one pill, once a day HIV-1 medicine. Ask your healthcare provider if GENVOYA is right for you. • Take GENVOYA with food.

GENVOYA.com

GENVOYA, the GENVOYA Logo, LOVE WHAT’S INSIDE, SHOW YOUR POWER, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: September 2017 © 2017 Gilead Sciences, Inc. All rights reserved. GENC0176 11/17

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D A I LY D O S E BY

TYLER CURRY

THE DAY MY LIFE CHANGED FOREVER FIVE YEARS AGO, I TOLD THE WORLD MY DEEPEST SECRET. I’VE NEVER REGRETTED IT. our lives are going to change before they do, nor can we predict the date of such momentous occasions—yet, I knew everything was about to change on November 31, 2012 as I watched a movie in sweats and a T-shirt, and made myself sick on candy and soda. For a while I had been pouring my heart out into an op-ed I blindly submitted to The Advocate. I told myself if it wasn’t picked up, that meant it was total crap—but at least I could chalk it up as a good therapy session. I expected to wait days for a response, but got one in less than 24 hours. An editor enjoyed the piece and wanted to run it right away. My fate sealed, I went to the movies and took advantage of my last chance to truly be anonymous because the next day my biggest secret could be trending. I had been wrestling with a decision for months. Living in fear of other people’s judgment, I could feel myself losing confidence and strength, bit by bit. I was 28 years old and hiding in plain sight. This newfound closet I found myself in was suffocating my spirit. It was time to come out, again. On December 1, 2012, The Advocate released my coming out story, “Confessions of a Newly HIV-Positive 20-something,” timed to coincide with World AIDS Day— which, since 1988, has been the annual awareness day for people worldwide to unite against HIV, support those living with the virus, and honor those who have died from AIDS-related complications. Suddenly there it all was: my heart laid out online for everyone to see. Up until that point, I had vacillated back and forth about what to expect. You can never fully appreciate the impact that coming out with your truth will have until you take the leap. Now, five years later, I can say

SHUTTERSTOCK; CODY SCOTT KINSFATHER (CURRY)

WE RARELY KNOW

in retrospect that the first day of living openly with HIV was the best day of my life. At the time, I didn’t know that coming out would give me an incredible platform to help others. I only knew that telling the truth would help me finally move beyond my own crisis. Since my first essay, every word I have written has been inspired by the stories and experiences so many others have shared in response. Sometimes, the best way to help yourself is to push past your own perspective and learn how to help others. That was the opportunity revealing my status gave me, and I am forever grateful. My life is better because of it. The path to finding yourself begins with who you are at this very moment. There are no shortcuts because every time you avoid the scariest, messiest part of your life, you end up right back where you started. You begin to change for the better by accepting the whole of who you are today, and more importantly, by allowing those around you to accept and love you as well. Two months ago, I took time to reflect again. My life certainly isn’t as exciting as it was five years ago. What was once a dramatic tsunami of emotional highs has calmed, becoming a placid sea of community involvement and steady growth. In the beginning, I was anxious and overly excited when giving advice to others struggling with their own HIV status. Now, it’s second nature to take them to coffee, throw my arm over their shoulders, and begin from square one. As a not-so-newly HIV-positive 30-something, I know there are still obstacles to face in the future. But when you aren’t wasting energy trying to hide pieces of yourself you can’t change, it’s that much easier to take on whatever life has in store. And that, right there, is all the advice I have to give. Everyone has their own interpretation of what being open means to them. If I had one wish it would be for everyone who is still hiding their status to come out of the closet and live in the light. Don’t just tell your truth—live it, breathe it, and sink all the way into it, until you no longer recognize the person you were before. I’ll see you on the other side.

Editor at large T Y L E R C U R RY is also a contributing editor at The Advocate magazine and the author of A Peacock Among Pigeons. (@IAmTylerCurry)

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B AC K TA L K

ART CRAWL ARTIST WILL NORTHERNER WAS TOLD BY A DOCTOR HE HAD THREE YEARS TO LIVE. THIRTY YEARS LATER, HE’S LIVING EVEN BIGGER. WILL NORTHERNER WAS working as an

installation artist at New York City’s legendary Chelsea nightclub, The Limelight, when he learned he was HIVpositive in October 1985, though he suspects he acquired the virus much earlier. “It’s a pity such knowledge can’t be discovered,” he says now about the inability to pinpoint a date. “After 32 years, I don’t remember a hell of a lot about the doctor who 48

ABOVE: “Schmoon 33,” artwork by Will Northerner BELOW: The artist selfie

told me, [other] than his nasally voice informing me that I was HIV-positive. He told me that I might expect to live perhaps three more years if I was lucky. I don’t recall much of [my] reaction other than that, with effort, I made myself remain as calm as I could in the face of a deadly viral threat. I doubt if I shed one tear, then or now… out of pity for myself. By 1985, I had already lost count of the people I knew who were infected or dead of AIDS…. In truth, I would have been far more surprised if I wasn’t [positive].” In the face of that challenge, Northerner established what he calls “my hard, fast, no-bullshit rules for maximizing my quality of living for whatever time I had left.”

The rules included: “Waste absolutely no time—waste no time pretending to like people, places, or things I didn’t like at all;” making no long-term plans; avoiding stress “because stress equals death;” writing and making art every day because “succumbing to fear is not an option;” maintaining a sense of humor and cherishing friends; and a pledge: “if and when quality of life ceases, and torture in being alive begins—I would kill myself.” The latter obviously never happened—nor did his doctor’s prediction. In fact, Northerner remained remarkably healthy and his T-cells never dropped lower than 700. Thirty-two years later, his T-cell count often hovers around 1,000, while “at the same time, my viral load remains undetectable—in short, my greatest surprise is that I am still alive and healthy.” He credits at least some of that to not being on the early treatments that proved to be incredibly toxic. “I am so fortunate that I never took AZT in the early years of the epidemic,” he says. “I watched far too many of my friends die of apparent toxic levels of AZT.” Northerner hasn’t had to deal with the kinds of side effects plaguing so many long-term survivors. “I never noticed adverse reactions to any of the HIV-specific regimes I consumed,” he says. “I have always been so lucky in having doctors that studied the latest breaking viral therapies and thereby prescribed them to me if they proved to be promising.” However, HIV dramatically impacted Northerner’s mental health. Following his diagnosis, he says he gave up on all long-term plans and “waited for the major symptoms of the deadly disease to set in. Year by year, as my health remained asymptomatic, my friends died. Every month. Every week. Sometimes every day.” Northerner says he has faced crippling depression over the ensuing years. Although he’s been diagnosed with bipolar disorder, he says the root of his depression wasn’t hard to see: “I survived an obscene number of my closest friends falling ill and dying before my eyes. It was amateurishly simple to deduce a panoply of reasons I might be terribly depressed. Surface reasons on top, but the hideous totality of pictures and vile memories, and the smells, and the tortured moods, and the inescapable tragedy and endless sorrow of watching a whole cadre of old friends—still so awfully young—wither, wilt, and die.... Yes, this got me down, way down—this made me crazy. This made me resort to oceans of self-medication… to survive.” Northerner says, “the ludicrously positive effect” of being HIV-positive and diagnosed as bipolar, was that he found himself thinking, “Holy shit! What’s next? Ebola? Leprosy? Spontaneous combustion?” Today, Northerner is relatively happy and has returned to teaching and making art. For him, it’s important to share his truth, because, “if I made it this long, then anyone can.”

COURTESY WILL NORTHERNER (ART), FACEBOOK (NORTHERNER)

B Y S AVA S A B A D S I D I S LONG-TIME SURVIVOR

MARCH / APRIL 2018

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

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

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

Possible Side Effects of Mytesi Include:

Tired of planning your life around diarrhea?

Enough is Enough Get relief. Pure and simple. Ask your doctor about Mytesi. Mytesi (crofelemer): • Is the only medicine FDA-approved to relieve diarrhea in people with HIV • Treats diarrhea differently by normalizing the flow of water in the GI tract • Has the same or fewer side effects as placebo in clinical studies • Comes from a tree sustainably harvested in the Amazon Rainforest What is Mytesi? Mytesi is a prescription medicine that helps relieve symptoms of diarrhea not caused by an infection (noninfectious) in adults living with HIV/AIDS on antiretroviral therapy (ART). Important Safety Information Mytesi is not approved to treat infectious diarrhea (diarrhea caused by bacteria, a virus, or a parasite). Before starting you on Mytesi, your healthcare provider will first be sure that you do not have infectious diarrhea. Otherwise, there is a risk you would not receive the right medicine and your infection could get worse. In clinical studies, the most common side effects that occurred more often than with placebo were upper respiratory tract (sinus, nose, and throat) infection (5.7%), bronchitis (3.9%), cough (3.5%), flatulence (3.1%), and increased bilirubin (3.1%). For Copay Savings Card and Patient Assistance, see Mytesi.com

Please see complete Prescribing Information at Mytesi.com.

• Upper respiratory tract infection (sinus, nose, and throat infection) • Bronchitis (swelling in the tubes that carry air to and from your lungs) • Cough • Flatulence (gas) • Increased bilirubin (a waste product when red blood cells break down) For a full list of side effects, please talk to your doctor. Tell your doctor if you have any side effect that bothers you or does not go away. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Should I Take Mytesi If I Am: Pregnant or Planning to Become Pregnant? • Studies in animals show that Mytesi could harm an unborn baby or affect the ability to become pregnant • There are no studies in pregnant women taking Mytesi • This drug should only be used during pregnancy if clearly needed A Nursing Mother? • It is not known whether Mytesi is passed through human breast milk • If you are nursing, you should tell your doctor before starting Mytesi • Your doctor will help you to decide whether to stop nursing or to stop taking Mytesi Under 18 or Over 65 Years of Age? • Mytesi has not been studied in children under 18 years of age • Mytesi studies did not include many people over the age of 65. So it is not clear if this age group will respond differently. Talk to your doctor to ﬁnd out if Mytesi is right for you

What Should I Know About Taking Mytesi With Other Medicines? If you are taking any prescription or over-the-counter medicine, herbal supplements, or vitamins, tell your doctor before starting Mytesi.

What If I Have More Questions About Mytesi? For more information, please see the full Prescribing Information at Mytesi.com or speak to your doctor or pharmacist. To report side effects or make a product complaint or for additional information, call 1-844-722-8256.

RELIEF, PURE AND SIMPLE

Mytesi comes from the Croton lechleri tree harvested in South America.

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