POZ January/February 2019 by Smart + Strong

A SMART+STRONG PUBLICATION JANUARY/FEBRUARY 2019 POZ.COM $3.99

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Letâ&#x20AC;&#x2122;s Stay Together Building a positive relationship Johnny Lester (left) and David Massey

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Guy Anthony founded Black, Gifted & Whole.

POZ STORIES

REAL PEOPLE, REAL STORIES Together, our stories can change the way the world sees HIV/AIDS. They inspire others in the fight and break down the shame, silence and stigma surrounding the disease. Go to poz.com/stories to read the experiences of others like you and to submit your own story.

#ADVOCACY

Fighting against HIV/AIDS has always been a struggle. Much work remains to end the epidemic. POZ encourages you to get involved in advocacy. Go to poz.com/advocacy to find the latest news and learn how you can make a difference in the fight.

#CRIMINALIZATION FIGHT HIV STIGMA

Opinions still vary on whether criminal law should apply to HIV disclosure, exposure and transmission. However, there is a growing consensus to make laws reflect current science. Go to poz.com/ criminalization for more on how you can get involved in reform efforts.

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

28 KEEP IT TOGETHER Serodiscordant couple David and Johnny are committed to each other—and to overcoming any challenge to their union. BY TRENT STRAUBE 38 THE ROAD AHEAD FOR HIV CURE RESEARCH Researchers are investigating multiple avenues and taking the long view. BY BENJAMIN RYAN 3 FROM THE EDITOR

16 EVERYDAY

Message of Love

Milestones in the epidemic

4 POZ Q+A

18 CARE AND TREATMENT

Venton Hill-Jones, CEO of the newly launched Southern Black Policy and Advocacy Network, shares his insights on how to improve health outcomes.

6 POZ PLANET Portraits of AIDS activists by photographer and ACT UP member Bill Bytsura • U=U • • Yen Tan’s film goes back to 1985 • Tom Hanks on 25 years after Philadelphia

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

AIDS United explores “What the Next Congress Could Mean for People Living With HIV,” and blogger Aundaray Guess reflects on “#LivingwithHIVwhileBlack.”

FDA OKs Delstrigo and Pifeltro • injectable implant ARV • cancer concerns • curing hepatitis C may dial back liver damage

23 RESEARCH NOTES

The Mike Pence problem • treatment with long-acting antibody injections • update on an immunotherapy cure trial • diagnoses among youth

26 SPOTLIGHT The social media buzz on the midterms

44 HEROES Guy Anthony offers affirmations, advocacy and advice to Black queer men.

POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for an 8-issue subscription) by Smart + Strong, 212 West 35th Street, 8th Floor, New York, NY 10001. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 233. POSTMASTER: Send address changes to POZ, 212 West 35th Street, 8th Floor, New York, NY 10001. Copyright © 2019 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® and POZ® are registered trademarks of CDM Publishing, LLC.

COVER: STEPHANIE ELEY; THIS PAGE: (ANTHONY) BILL WADMAN; (TYPEWRITER; GAVEL/BOOKS AND BARBED WIRE) ISTOCK

MAKE A DIFFERENCE

FROM THE EDITOR

EDITOR-IN-CHIEF

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Message of Love

‘M GRATEFUL FOR HAVING love in my life. That includes family and friends, but I’m especially thankful for having a partner by my side for nearly 13 years. His love has given me more than I could have ever predicted. As a serodiscordant couple—I’m living with HIV, and he is HIV negative—we also realize how important it is to share our magnetic status with others. In fact, we did so in a 2012 national campaign titled “Let’s Stop HIV Together” from the Centers for Disease Control and Prevention. However, the need for us to continue disclosing never seems to cease. I regularly share this information, and more often than not, the response is still one of shock or, at the very least, of discomfort. Such are the stigma and fear that persist about HIV transmission risk. Thankfully, many couples of mixed HIV status are able to share their stories to help fight back against such discrimination. Our cover guys—David Massey and Johnny Lester (aka David & Johnny)— are one of them. David lives with HIV, and Johnny is HIV negative. In addition to blogging for POZ, David & Johnny are part of the 2018 relaunch of “Let’s Stop HIV Together.” Their many endeavors include offering relationship advice and launching business ventures. They’re even engaged to be married! Go to page 28 to read more about their journey. Another important factor in dispelling stigma and fear about HIV transmission risk is biomedical prevention. The successes of pre-exposure prophylaxis (PrEP) and treatment as prevention (TasP) have been game changers, especially the fact of “U=U” (undetectable equals untransmittable). PrEP, TasP and U=U have not, however, dampened the desire for an HIV cure. There is arguably no goal in the fight against the virus that is more universal. That said, there have been many false hopes over the years. As a result, most folks

are now more cautious in their optimism. I understand the frustration with HIV cure research, which often leads to disbelief that a cure will ever happen. I’ve always been more optimistic on this topic. I believe that I will see a cure in my lifetime. I realize this timetable is unsatisfying to many of us, but taking the long view is key. Go to page 38 for more. Believing in positivity is something that Guy Anthony knows a lot about. After he tested HIV positive in 2007 at age 21, Guy struggled with his diagnosis. Although it took him a few years to accept living with the virus, he has become a strong advocate. After holding positions at various groups and authoring a book of advice for his fellow Black gay men, Guy is now president of Black, Gifted & Whole, a nonprofit that empowers, educates and mobilizes Black queer men through sexual health awareness, higher education and access to resources. Go to page 44 for more. Another advocate with many roles under his belt is Venton Hill-Jones. He is now CEO of a newly launched organization—the Southern Black Policy and Advocacy Network. Go to page 4 to read our Q&A with Venton.

ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF editor-in-chief@poz.com

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

poz.com JANUARY/FEBRUARY 2019 POZ 3

POZ Q+A BY ORIOL R. GUTIERREZ JR.

POLICY & ADVOCACY

ENTON HILL-JONES IS CHIEF EXECUTIVE OFFICER OF THE Southern Black Policy and Advocacy Network (SBPAN). The nonprofit organization was created in 2018 to improve health, social and economic conditions facing Black communities living in the U.S. South. SBPAN seeks to improve health outcomes and reduce social and economic disparities through training, education, advocacy and mobilization. Hill-Jones is also co-principal of Hill-Jones Consulting, LLC, which works with clients to strategically advance programs and policies affecting diverse communities through effective programs and events management, public policy consulting and technical assistance. HIV is one of its areas of practice. Clients include AIDS United. Previously, Hill-Jones has been senior program manager at AIDS United, program officer for LGBT health and wellness initiatives at the National Black Justice Coalition, communications and education manager at the National Black Gay Men’s Advocacy Coalition and community-building coordinator at the University of California, San Francisco, where he led the implementation of Mpowerment, an HIV prevention intervention funded by the Centers for Disease Control and Prvention (CDC). He has a master’s of science in health care administration from the University of Texas at Arlington, College of Business Administration. In addition to his professional background in HIV, Hill-Jones has personal experience; he tested positive for the virus in 2007. He is a native of Dallas.

What motivated you to launch SBPAN?

The South is the epicenter of health disparities in the United States, particularly for African Americans. As a result, the Southern Black Policy and Advocacy Network

4 POZ JANUARY/FEBRUARY 2019 poz.com

was created to bring together Black community leaders in the region and to help raise their voices as advocates. When SBPAN was created, however, we the founders—myself, board president Kirk Myers, MPH, and board secretary Kimberly Parker, PhD—knew that we did not want to only address HIV because our communities are dealing with so much more than the virus. We want SBPAN to tackle the entire breadth of health disparities in the South. However, considering the expertise of its founders, SBPAN is addressing the virus through one of its first initiatives, the Southern Black HIV/AIDS Network. Can you discuss further the breadth of the advocacy you want to achieve?

This is an important moment in the HIV/AIDS epidemic. We’re seeing a stabilization of cases among some Black people, but we’re also seeing an increase in HIV cases in communities such as Black gay men and transgender women. We want to use this opportunity, especially from the two- to four-year

BOTH IMAGES: STOCK

The Southern Black Policy and Advocacy Network seeks to improve health and reduce disparities.

perspective, to engage in policy where we know a lot of things are moving. In that time span, we have new leaders representing the Southern states in Congress who need to be educated about HIV/AIDS and its effect in Black communities. We also have a presidential election in 2020. Going deep in educating elected officials needs to be done in that time. We also want to build networks that are focused on health-related policy and advocacy issues. Within five to 10 years, we want to establish the Southern Black HIV/AIDS Network. Using that as a model, we can also move on to create a Southern Black Cancer Network or a Southern Black Diabetes Network, etc. Eventually, we’ll have several networks that will have overlapping conversations about health disparities and how we really address them. We want to make sure that we’re having multiple discussions at one time and not just continuing to talk about HIV in a silo.

nities to mobilize when necessar y against any legislation that may hurt individuals who are living with HIV or that may hurt our prevention efforts. As far as education, a lot of work needs to be done. We know that key messaging about biomedical prevention—such as pre-exposure prophylaxis (PrEP) and treatment as prevention (TasP), especially “U=U” [undetectable equals untransmittable]—is lagging in the South among Black communities. We want to make sure our leaders are more actively getting this information out to people. Training is an area of future growth for SBPAN. Right now, we’re just doing an assessment of needs. Tell us more about SBPAN’s priorities.

They mostly include capacity building

JONATHAN TIMMES

SBPAN seeks to achieve these goals through training, education, advocacy and mobilization. Can you explain?

Actually, “training, education, advocacy and mobilization” just spell team, which is why we phrase it that way. That said, SBPAN has started its work by focusing on mobilization. In 2019, we want to bring together Black leaders who are running HIVrelated organizations, who are leading advocacy efforts and who are working at the state level. To that end, in 2018 on World AIDS Day, which is marked annually on December 1, we launched the Southern Black HIV/AIDS Network with an online hub and social media groups to bring these folks together. On National Black HIV/AIDS Awareness Day, which is observed every year on Februar y 7, we’re launching an awareness campaign to address HIV among Black communities in the South. We received funding for that project from the Southern AIDS Coalition. Our advocacy work is focused on this new legislative session. We need to continue to preserve the gains that have been made over the past decade. We also need to engage Black commu-

Venton Hill-Jones

is a critical need, especially since many of them have been involved for decades. In these political times, the desire for community members to jump in the fight and make a difference is high. We need to have that pipeline to be able to get people into this fight. What are some of SBPAN’s challenges and opportunities in 2019?

After living in Washington, DC, for many years, my husband and I decided to move to Dallas. The key question for me in returning to the South, in particular at this time in our politics, was: How do you want to make a difference as it relates to HIV, health and the overall well-being of our country right now? The need for something like SBPAN has always been there. The timing and

“We want to tackle the breadth of health disparities in the South.”

and expanding the leadership pipeline but also enhancing data analysis and improving dissemination of information. We know that there’s a need for more engagement around policy and advocacy. Messaging is not getting to those who need it the most. We want to raise the capacity of advocates and communit y leaders to engage in a meaningful way. Not only in federal policy but also at the state and local level. The biggest question that I’ve asked a lot of folks right now is: If you needed to reach Black leaders and HIV leaders in the South, where would you go? That is where we want the Southern Black HIV/AIDS Network to fit in. That is a part of the capacity building that’s needed, creating an infrastructure and an unapologetic space for engagement. As far as the leadership pipeline goes, current leaders are saying that it

the resources have finally come together. I’m looking for more opportunities to bring together Black leaders in the South. I look forward to the richness that this ongoing collaboration is creating even now. As someone who has worked primarily with Black gay men and LGBT communities, it feels good to be a part of something that involves the entire Black family, because that’s what we’re going to need to end the HIV/AIDS epidemic. We’re going to need all of us at the table—Black gay men, Black women, the transgender community, young people and seniors. We’re going to need everybody because those are the people who are going to be on the front lines. From all of my experiences doing this work, I sincerely believe that we’re all going to have to be able to do this together. I look forward to using SBPAN as a vehicle to support that need. ■

poz.com JANUARY/FEBRUARY 2019 POZ 5

POZ PLANET BY TRENT STRAUBE

PORTRAIT OF AN ACTIVIST

The project began in 1989. Bill Bytsura had recently lost his partner, Randy Wayne Northup, to AIDS. Devastated and unmoored, he took the advice of a friend and joined New York activist group ACT UP (AIDS Coalition to Unleash Power), then almost two years old. He hoped to connect with folks who understood what he was going through. Initially turned off by the aggression at the meetings—“people were screaming at each other,” he recalls—Bytsura joined the media committee and put his photography skills to work, shooting various demonstrations. He soon got the idea to create portraits of AIDS activists, inviting members to his studio and eventually traveling to international AIDS conferences to photograph the wider community. “I’d say, ‘Whatever you want for the photograph is OK—nude or whatever,’” Bytsura says, explaining that many subjects brought props or, in one case, wanted to be photographed with his dialysis tubes. “But my thing was it had to be black-and-white, and I wanted the focus on faces and bodies.” One other requirement: The activist had to write something—any kind of statement—to accompany the photograph. Fast-forward to 2018. Bytsura has amassed over 225 portraits. He narrowed them down to about 60 members of ACT UP and published the photos, along with the activists’ statements and some of his own recollections, in a must-experience book titled the AIDS activist project. Flip through the pages and you’ll come face to face with the heartbreak and horror, the anger and inspiration of the early epidemic. You’ll recognize several names from contemporary headlines—Peter Staley, Ann Northrop and Michelangelo Signorile—because they survived and are still acting up. Others weren’t so lucky. If it weren’t for ACT UP, Bytsura notes, we might not have effective treatment today—or even gay marriage. “People were on TV, getting arrested. They didn’t give a shit,” he said. “They pushed boundaries, and [the public] got Clockwise from above: used to it.” Bill Bytsura; Peter You can purchase the book at theAIDSactivistproject.org. Visit POZ.com to read about the stories behind many of these portraits.

Staley, 1990; Mona Bennett, 1992; Wayne Turner and Steve Michael, 1992; Keith Cylar, 1998; Moisés Agosto’s statement; the book cover

6 POZ JANUARY/FEBRUARY 2019 poz.com

ALL IMAGES: COURTESY OF BILL BYTSURA

Decades ago, Bill Bytsura photographed ACT UP members. Now he’s got a book.

poz.com JANUARY/FEBRUARY 2019 POZ 7

What is BIKTARVY®? BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements. BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS.

IMPORTANT SAFETY INFORMATION

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

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

What are the other possible side effects of BIKTARVY? Serious side effects of BIKTARVY may also include: } Changes in your immune system. Your immune system may get stronger and begin to ﬁght infections. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY. } Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY. } Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death.

Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. } Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (5%), and headache (5%). Tell your healthcare provider if you have any side effects that bother you or don’t go away.

What should I tell my healthcare provider before taking BIKTARVY? } All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection. } All the medicines you take, including prescription and over-the-counter medicines, antacids, laxatives, vitamins, and herbal supplements. BIKTARVY and other medicines may affect each other. Keep a list of all your medicines and show it to your healthcare provider and pharmacist, and ask if it is safe to take BIKTARVY with all of your other medicines. } If you are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking BIKTARVY. } If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Ask your healthcare provider if BIKTARVY is right for you.

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

PZA504603A.pgs 12.10.2018 15:37

ESA

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

KEEP EMPOWERING.

Because HIV doesnâ&#x20AC;&#x2122;t change who you are. BIKTARVY is a 1-pill, once-a-day complete HIV-1 treatment for adults who are either new to treatment or whose healthcare provider determines they can replace their current HIV-1 medicines with BIKTARVY.

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

PZA504603B.pgs 12.10.2018 15:37

ESA

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

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

ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements. BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. Do NOT take BIKTARVY if you also take a medicine that contains: • dofetilide • rifampin • any other medicines to treat HIV-1

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

POSSIBLE SIDE EFFECTS OF BIKTARVY BIKTARVY can cause serious side effects, including: • Those in the “Most Important Information About BIKTARVY” section. • Changes in your immune system. • New or worse kidney problems, including kidney failure. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. • The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (5%), and headache (5%). These are not all the possible side effects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.

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

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

BIKTARVY, the BIKTARVY Logo, DAILY CHARGE, the DAILY CHARGE Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2018 © 2018 Gilead Sciences, Inc. All rights reserved. BVYC0047 06/18

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ESA

POZ PLANET BY TRENT STRAUBE

Clockwise from top left: a screen grab from one of the four YouTube video stories and three samples of posters that can be customized and downloaded online; inset below: graphics from PositiveSeries.org

“U=U” STORIES

ALL IMAGES COURTESY OF POSITIVESERIES.ORG

The “+series” (Positive Series) campaign lets the world know that undetectable equals untransmittable. Fact: People with HIV who maintain an undetectable viral load cannot pass along the virus sexually. That’s the powerful message behind “Undetectable Equals Untransmittable,” or “U=U.” Problem is, not enough people know this fact, and most health care providers and AIDS service organizations lack the resources to develop their own promotional materials to get the word out. That’s why Prevention Access Campaign (PAC), with support from ViiV Healthcare, launched the “+series” (Positive Series) campaign. At the heart of the campaign are four first-person videos, beautifully animated and posted on YouTube, where they’re shareable via social media. Each video tells the life-affirming U=U story of a real person living with HIV: Dee Connor, Katie Willingham, Kaleb Anderson and Fernando De Hoyos. Videos are in English but available with subtitles in Chinese, French, Filipino, English and Spanish. What’s more, the campaign allows individuals and organizations to create unique U=U posters based on artwork from the videos (anyone can download them from PositiveSeries.org and customize them with logos). They’re perfect for hanging in offices and handing out as flyers. GIFs are also available.

“We envision the videos playing in doctor’s offices or during appointments with folks who prefer learning visually and through stories,” says PAC executive director Bruce Richman, who adds that the lessons shared in the videos go beyond HIV transmission. “The captivating videos of authentic stories not only educate about U=U and engagement in care but also start conversations about gender identity, sexual orientation, racism, HIV stigma, alcoholism, adherence challenges and intimate partner violence.” Telling such stories can change lives. As Katie, a transgender mom, says in her video: “Before [learning about U=U], I was always feeling like the world was better off without me. The message was exactly what I needed to hear to become my best. I could be a mom again. I could date again without the fear of intimacy. I felt human again just from hearing that U=U.”

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POZ PLANET BY TRENT STRAUBE

GO BACK TO 1985 Why Yen Tan says long-term survivors seem grateful about his AIDS film Don’t be fooled by the familiar-sounding synopsis of the film 1985. Shot in black-and-white, the movie is about closeted HIV-positive advertising executive Adrian (Cory Michael Smith), who returns to his Texas hometown for the holidays during the first wave of the AIDS crisis. He tries to reconnect with his preteen brother (Aidan Langford), his Christian parents (Michael Chiklis and Virginia Madsen) and his estranged childhood friend (Jamie Chung). But don’t expect the obligatory coming-out scene or the changeof-heart deathbed weeper from writer-director Yen Tan. For example, when Adrian learns that his younger brother is a big Madonna fan but that their conservative parents have confiscated his pop-music cassettes, Adrian gains his little sibling’s trust by telling him about seeing Madonna’s Virgin Tour in New York City. You get the impression the two brothers have more in common than musical tastes, and you wonder how their relationship will play out. We discussed the film with Tan; for the full interview, visit POZ.com.

(1985 POSTER AND CAST) INSTAGRAM/@1985THEFILM; (TAN) COURTESY OF HUTCH; (HANKS) YOUTUBE/@THE COCA-COLA CO.

What’s your relationship to HIV and LGBT issues and to this time period? I encountered many men who were living with HIV/AIDS at one of my first jobs in the ’90s, working at a viatical settlement firm in Dallas. [Editor’s note: During the early days of the epidemic, many people with AIDS sold their life insurance for quick but discounted lump sums of money, known settlements. The film is [my attempt] at relating as viatical settlements.] some stories they shared with me. I grew up in Malaysia in the ’80s. AIDS made headlines in a sensationalistic and uninformed way, which really influenced how I viewed my sexuality. In my adolescent mind, I just assumed the disease came along with being gay. I thought my life ahead was going to be filled with pain, suffering and oppression. I wanted to go deeper into a time where someone didn’t think he had the option of sharing his truth with his loved ones and what the emotional ramifications of that are. The benefit of telling this seemingly familiar story today is that I can completely leave out the words AIDS and gay and the audience can still understand the context. This feels true to its time, since they were such taboo topics, but it encouraged a more subtle narrative, as we no longer have the burden of “educating” the viewers. What has been the response to the film? I’m thankful that the film is seen as something that could nurture a process of healing. There’s this idea that we should have moved past these types of stories, but I believe many stories about that time haven’t been told. It’s evident when AIDS survivors I’ve talked to are grateful to have a film like this around. They often feel like they’ve been forgotten.

Clockwise from top: the film’s poster; the cast, from left to right: Aidan Langford, Michael Chiklis, Virginia Madsen and Cory Michael Smith; director Yen Tan

25 Years After Philadelphia Released in December 1993 and starring Tom Hanks, Denzel Washington, Mary Steenburgen and Antonio Banderas, Philadelphia was the first mainstream movie to address the AIDS epidemic. Director Jonathan Demme cast more than 50 people living with HIV/AIDS in the film, which was based on the life of Geoffrey Bowers, a lawyer who died of AIDS-related illness in 1987. The lead role earned Hanks an Oscar. To mark the 25th anniversary of the film’s release, Coca-Cola and (Product) RED, which raises AIDS funds globally, created the documentary The Last Mile, in which several of Philadelphia’s actors and screenwriter Ron Nyswaner reflect on the early days of the public Tom Hanks health crisis and what’s being done to meet today’s challenges. You in The Last Mile can watch the film (for free!) online at RED.org/cocacola.

poz.com JANUARY/FEBRUARY 2019 POZ 13

VOICES BLOGS AND OPINIONS FROM POZ.COM

WHAT’S NEXT? In a blog post titled “What the Next Congress Could Mean for People Living With HIV,” AIDS United explored the results of the 2018 Democratic victory in the House of Representatives. Below is an edited excerpt.

he larger media narrative of the midterm shake-up in Congress will likely revolve around House Democrats and their approach to President Trump. However, most of this coverage will focus on issues that do not directly impact people living with or affected by HIV. We at AIDS United wanted to provide a more tailored preview of the ways in which this new Congress will impact health care, HIV funding, drug pricing and other related issues. Congressional Leadership Representative Nancy Pelosi (D–Calif.) is poised to once again be the speaker of the House. However, Pelosi’s reelection as speaker after an eight-year hiatus is not a certainty. More impactful for the HIV advocacy community could be the selection of a handful of House committee heads. Representative Frank Pallone (D–N.J.) is expected to chair the House Energy and Commerce Committee, where he will oversee the most expansive set of health care issues in the House, including the 340B Drug Discount Program, which allows some health centers, including Ryan White

14 POZ JANUARY/FEBRUARY 2019 poz.com

clinics, to use savings from pharmaceutical discounts to support their programs. 340B will continue to be a hot-button issue, but much of the harmful legislation proposed by the last Congress will be dead on arrival in a Democratic House. Representative Nita Lowey (D–N.Y.) will likely be named House Committee on Appropriations chair, becoming the first woman to be so named in the committee’s 150-year history, while Representative Rosa DeLauro (D–Conn.) is set to chair the Labor, Health and Human Services and Education and Related Agencies Subcommittee; both positions have significant sway in setting funding levels for federal agencies—particularly those that support the Ryan White Program and other HIV care and treatment. Representative Elijah Cummings (D–Md.) will probably chair the House Committee on Oversight and Government Reform and will be responsible for handling many of the larger-scale issues mentioned above. The ACA Finds Relative Safety After a tumultuous 115th Congress that saw the GOP try everything in its power to torpedo the Affordable Care

Act (ACA), the threat of ACA repeal by Congress will be nonexistent over the next two years, thanks to the new Democratic House majority. However, the ACA’s immunity from attack does not extend to the Trump administration itself, a fact that is not lost on Democratic House leadership. We will likely see a number of efforts from House Democrats to expose the Trump administration’s attempted sabotage of the ACA and implement policies to prevent further sabotage. Standing Up for Communities During his first two years in office, it has been difficult for Democrats in Congress to put meaningful checks on President Trump’s repeated attacks on and abuses of immigrant populations and communities of color. In the 116th Congress, Democrats now have the power to call for investigations into the Trump administration’s discriminatory and harmful actions. In the coming months, expect to see House Democrats launch investigations into both the Trump administration’s systemic abuse and incarceration of immigrant families and its unacceptable response to the devastation of Hurricane Maria in Puerto Rico. ■

WHILE BLACK In a blog post titled “#LivingwithHIVwhileBlack,” blogger and activist Aundaray Guess asks: In this racially charged environment, how does one find value in managing HIV care? Below is an edited excerpt.

BOTH IMAGES: ISTOCK (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

ost Black people can recall the first time they were called the N-word. For me, I was about 12 years old walking home from school when a car full of young white adults passed me. They yelled out the word to me. Hearing it brought forth more confusion than fear. What did they see in me that made them so hateful? With the recent rise of racism and hate and minority groups being targeted and retargeted, I reflected on something not often discussed: living with HIV while Black. For a Black person living with HIV, it would be a luxury to just focus on one’s status. The reality is that once we walk outside our homes, people don’t see our HIV status—people see our skin color. As a Black man living with HIV, I understand that today it’s not only African Americans who are targeted. I know that hate is being directed at many groups, from undocumented immigrants to Muslims to basically anyone who doesn’t look white. I also confess that I have a slight edge over my brothers and sisters living with HIV who are in rural and so-called red states. In those places, racism is

magnified and sometimes outright blatant. Living in New York City, I am surrounded by diversity, which sometimes shields me from many forms of racism. In this racist environment, I marvel at those who still manage their HIVpositive status. To white people, this may seem like a ridiculous statement, as they often don’t have to take into account their ethnicity, which is the result of having privilege. Even some woke African Americans who confront racism head-on may not connect with this statement. However, some folks don’t have the tools to dismantle racism in their environment. Many HIV-positive Black people are struggling to find value in their lives and health when public displays of hatred show otherwise. So how do Black individuals manage living with HIV when their Black lives don’t seem to matter? I consider myself one of the woke persons of color who don’t allow the discriminatory aspects of this world to hinder their care. That was not always the case. Growing up, it felt like my job was to make white people comfortable. This could entail making a joke while in an elevator with a white person to make that person feel safe or hunching my shoulders to not appear threatening.

Those were my tools of the trade. I was the jokester, so they knew that I was one of the “good ones.” When it comes to my HIV, I will admit there were times I didn’t want to take my meds, asking myself, “Why bother?”— especially after being pulled over by the cops for “driving while Black,” something that happened often in my 20s despite how safely I drove. I would become frustrated with my HIV support group because race was never mentioned. And if I voiced my concerns about avoidance of the topic, I was reminded that there was no space in the schedule to discuss it. To move to my current space of empowerment, I had to talk out loud about race. I had to stop pretending it didn’t exist. I forced my doctor to discuss it during my visits, since it was my reality. I also had to examine my own actions and contributions and to stop feeding the perceptions of how a “good” Black person looks and acts. Race is often the root of people’s concerns. Race is connected to inadequate medical care—as well as to poverty, crime and inequality. Medical providers are doing a great injustice to people of color if they don’t provide space to talk about race. ■

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EVERYDAY BY JENNIFER MORTON

It is no longer a felony in California to KNOWINGLY EXPOSE OR TRANSMIT HIV to a sexual partner. The new law signed by Governor Jerry Brown lowers the offense to a misdemeanor with a maximum of six months in jail. Previously, a person could face up to eight years in prison if found guilty. The law also changes the penalty for knowingly donating HIV-positive blood from a felony to a misdemeanor. (2018)

The United States officially ends its 22-YEAR BAN ON TRAVEL into the country by foreigners living with HIV. (2010)

February 3

AmfAR announces the launch of COUNTDOWN TO A CURE FOR AIDS, a $100 million research initiative aimed at finding a broadly applicable cure for HIV by 2020. (2014)

Piano virtuoso LIBERACE dies of AIDS-related complications. (1987)

The Centers for Disease Control and Prevention (CDC) reports the first two cases of AIDS among females whose male partners had the disease, suggesting HIV could be TRANSMITTED VIA HETEROSEXUAL SEX. (1983)

NATIONAL BLACK HIV/ AIDS AWARENESS DAY

POZ PERSONALS, a dating service for people living with HIV, launches on Valentine’s Day. (2005)

Artist KEITH HARING dies of AIDS-related complications. (1990)

Director IRA SACHS’S FILM LAST ADDRESS PREMIERES at Sundance. It uses images of the exteriors of the houses, apartment buildings and lofts where artists such as Keith Haring, Robert Mapplethorpe, Peter Hujar, Cookie Mueller and Klaus Nomi were living at the time of their death to mark the disappearance of a generation. (2010)

The CDC reports the POSSIBLE TRANSMISSION OF HIV TO A PATIENT THROUGH A DENTAL PROCEDURE performed by a dentist who is HIV positive. (1990)

Indiana state health officials announce an HIV OUTBREAK LINKED TO INJECTION DRUG use in Scott County. By the end of the year, Indiana confirms 184 new cases of HIV linked to the outbreak. (2015)

THE ELTON JOHN AIDS FOUNDATION hosts its 25th annual Academy Awards Viewing Party at West Hollywood Park in Los Angeles. The event raises $7 million for the global effort to end AIDS. (2017)

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

16 POZ JANUARY/FEBRUARY 2019 poz.com

(NUREYEV AND LIBERACE) WIKIMEDIA; (DENTAL TOOLS) ISTOCK; (HARING SCULPTURE) DREAMSTIME.COM/ZHUKOVSKY

January 1

Worldrenowned ballet dancer RUDOLF NUREYEV dies of AIDS-related complications. (1993)

CAN Community Health is a not-for-profit organization offering compassionate treatment and trusted care to those living with HIV, Hepatitis C, STDs and other diseases. Beyond complete medical and dental services, our health centers offer psychological and lifestyle counseling. CAN Community Health also partners with other local agencies, allowing us to extend our reach to help more people and provide more services to make an even bigger impact in our community.

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CARE AND TREATMENT BY BENJAMIN RYAN

FDA OKS DELSTRIGO AND PIFELTRO The Food and Drug Administration (FDA) has approved Merck’s Pifeltro (doravirine), a new non-nucleoside reverse transcriptase inhibitor (NNRTI), as well as Delstrigo (doravirine/ lamivudine/tenofovir disoproxil fumarate), which includes Pifeltro in a three-drug single-tablet antiretroviral (ARV) regimen. Both tablets are indicated for the treatment of HIV among those beginning an ARV regimen for the first time. Pifeltro should be taken in combination with other HIV medications. The approval of both tablets was based upon a pair of randomized double-blind controlled trials that together included 1,500 newcomers to HIV treatment. One trial compared Delstrigo with Atripla (efavirenz/tenofovir disoproxil fumarate/ emtricitabine), while another trial randomized participants to receive Pifeltro or Norvir (ritonavir)boosted Prezista (darunavir), each paired with Truvada (tenofovir disoproxil fumarate/emtricitabine) or Epzicom (abacavir/lamivudine). In both trials, Delstrigo and Pifeltro-based regimens proved as effective at suppressing HIV as the comparison regimens. Delstrigo and Pifeltro, however, bested the other regimens with regard to study participants’ LDL cholesterol and non-HDL cholesterol. Compared with those who received Atripla, those taking Delstrigo also had lower rates of adverse neuropsychiatric health events, including dizziness, sleep problems and an altered ability to think clearly and concentrate. “I consider doravirine (Pifeltro) to be the best in the NNRTI class. Its higher genetic barrier and lack of central nervous system side effects make it a viable treatment option for persons living with HIV,” says Antonio Urbina, MD, an HIV specialist at Mount Sinai Hospital in New York City. Delstrigo’s arrival, he says, marks the first time the U.S. treatment guidelines “include a regimen that includes generic antivirals, a possible tipping point in the landscape for use of generic [antiretrovirals] in the future.”

Injectable Implant ARV Researchers have devised a means of injecting into the muscles a mix of an antiretroviral (ARV) and other materials that hardens into a removable implant that provides months of HIV medication as it gradually dissolves. Promising tests of this technology in mice and monkeys have raised hopes that such a drug-delivery mechanism may one day help address the problem that can compromise the efficacy of HIV treatment as well as pre-exposure prophylaxis (PrEP): poor adherence to a daily drug regimen. Researchers designed an injectable formulation consisting of Tivicay (dolutegravir), a polymer and a solvent. They found that a single dose given to humanized mice and rhesus macaques effectively delivered the ARV, suppressed HIV and, among mice that were HIV negative, protected against multiple vaginal exposures of the virus. Even 283 days after the injection with the ultra–long-acting Tivicay, one third of the mice still had detectable drug in their plasma. The hardened implant was easily removed via a small incision in the skin. The implants were well tolerated in the animals, with little or no signs of toxicities. Study author Martina Kovárová, PhD, an assistant professor at the University of North Carolina School of Medicine in Chapel Hill, says the removability of the implant “will be important in the future in case of an adverse reaction or pregnancy while the delivery system is in place. This gives the formulation a significant advantage over other long-acting injectables that are currently in clinical trials."

18 POZ JANUARY/FEBRUARY 2019 poz.com

Curing Hep C May Dial Back Liver Damage

ALL IMAGES: ISTOCK

CANCER CONCERNS People with HIV are increasingly being diagnosed with a non-AIDSdefining cancer for a second time, a phenomenon driven in part by longer life spans. Researchers analyzed data on primary cancers among 22,600 people who were diagnosed with HIV in San Francisco between 1990 and 2010. They identified 4,550 primary cancers, including 4,150 that were an individual’s first diagnosis of cancer and 370 second primary cancers. A primary cancer is a novel malignancy, as opposed to cancer that spread from another source. Fourteen first primary cancers were more commonly diagnosed among people with HIV compared with the diagnosis rate among the general population—including by a factor of 127-fold for Kaposi sarcoma, 47-fold for anal cancer, 17-fold for non–Hodgkin lymphoma, 13-fold for vulvar cancer, 10-fold for Hodgkin lymphoma and 8-fold for invasive cervical cancer. Compared with the general population, the diagnosis rate for second primary cancers was higher by a factor of 28-fold for Kaposi sarcoma, 17-fold for anal cancer, 11-fold for non–Hodgkin lymphoma, 5-fold for Hodgkin lymphoma and 4-fold for liver cancer. The diagnosis rate in the HIV population of both first and second primary cancers that were AIDS-defining declined during the study period. Meanwhile, the diagnosis rate of second primary cancers that were non-AIDS-defining increased. “People can reduce their risk for developing either a first or subsequent cancer by making lifestyle changes,” advises study author Nancy A. Hessol, MSPH, a professor of clinical pharmacy and medicine at the University of California, San Francisco, “such as avoid using tobacco and alcohol. Remaining adherent to [antiretroviral treatment] is also important for keeping HIV in check and maintaining the immune system.”

People who cure their hepatitis C virus (HCV) with direct-acting antiviral (DAA) treatment may experience a regression in their liver fibrosis as a result. Spanish researchers conducted a study that included 260 people with HCV who underwent DAA treatment, analyzing changes in their liver fibrosis according to the Fibroscan assessment method. A total of 246 of the individuals were cured and were included in the study’s analysis. Forty-two percent of the participants were coinfected with HIV. Fifty-seven percent had advanced liver fibrosis. The median Fibroscan score among all participants was 11 kilopascals, indicating moderate fibrosis. At the 12-week posttreatment mark, the participants experienced a median drop of 2.1 kilopascals in their Fibroscan scores. Forty percent of the participants experienced a significant drop in their Fibroscan score. Of those who started the study with advanced liver fibrosis, 52 percent experienced a significant drop, compared with 23 percent of those who started without fibrosis or with mild fibrosis. After adjusting the data for various factors, the researchers found that the only independent factor associated with liver fibrosis regression after treating HCV was having a high initial Fibroscan score. “Despite improvements being more pronounced in the subset of patients with baseline advanced fibrosis or cirrhosis,” the study authors cautioned in their conclusion, “a large group of them persist with cirrhosis after being cured and warrant further clinical follow-up, including periodic screening for liver cancer.”

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Introducing the new and improved

POZ.com

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

RESEARCH NOTES BY BENJAMIN RYAN

PREVENTION

TREATMENT

When Vice President Mike Pence was governor of Indiana, he apparently missed the chance to prevent most of the 215 HIV cases diagnosed during the 2015 outbreak among people who inject drugs (PWID) in Scott County. The HIV infection cluster was first detected among PWID in the county in November 2014 and peaked at about 126 cumulative people around January 2015, according to researchers. Pence’s response, including granting temporary permission for the establishment of a syringe services program, began two months later. Several years earlier, local public health leaders had warned of expanding opioid use in Indiana and an emerging hepatitis C virus outbreak in Scott County. The HIV outbreak could have been limited to an estimated 56 or fewer people if Pence’s administration had taken action in January 2013 or to 10 cases or fewer if a response had been initiated in April 2011.

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

Pence Problem

Antibody Injections

CURE

Immunotherapy

CONCERNS

Long-acting injections of HIV antibodies may eventually be an alternative to standard antiretroviral (ARV) treatment. Researchers gave 15 people, all of them on effective ARV treatment, infusions of two antibodies, called 3BNC117 and 10-1074. Two days later, the investigators stopped their ARVs; three and six weeks after that, participants received additional infusions of both antibodies. The infusions were generally well tolerated. Nine of the 11 people who finished the study experienced full suppression of HIV for more than 15 weeks and a median of 21 weeks—that’s while off ARVs. None of these nine individuals saw their virus develop resistance to both of the antibodies. Two of the participants still had a fully suppressed virus at the end of the 30-week study. A larger study is already enrolling an expected 40 participants with HIV who will receive an optimized regimen of the antibodies.

Researchers in an early trial of a “kill” component of the kick-and-kill approach to curing HIV drew virus-specific immune cells from six HIVpositive people on effective ARV therapy. After growing these cells in a laboratory, they gave the participants two infusions of 20 million of their own cells. Two participants then saw a detectable increase in their CD8 immune-cell-related activity against HIV, according to some but not all the tests the investigators used. But overall, the treatment was not associated with any appreciable enhancement in the HIV-related immune response of those in the study group. Nevertheless, the trial achieved its primary aim of showing that the reinfusion process was safe and well tolerated, as participants experienced few adverse health events. A separate ongoing clinical trial is investigating whether such reinfusions, used in combination with a virallatency reversing agent called vorinostat, an HDAC inhibitor, may shrink the viral reservoir.

HIV diagnoses among 13- to 29-year-old men who have sex with men (MSM) have risen by 3 percent annually since 2008. The Centers for Disease Control and Prevention estimates that actual transmissions have declined 3 percent annually in 13- to 24-year-olds and increased 5.7 percent annually among 25- to 35-yearolds. Between 2008 and 2016, a total of 236,150 MSM were diagnosed with HIV; of these, 45 percent were ages 13 to 29, 43 percent were 30 to 49 and 12 percent were at least 50 years old. Blacks made up 49 percent, 28 percent and 25 percent of diagnoses in the youngest, middle and oldest age brackets, respectively. Of the 10 states with the highest proportion of MSM living with diagnosed HIV falling into the youngest age bracket, nine were in the South. Of the four major regions, the South saw the steepest increases in HIV diagnoses during the study period.

Youth Diagnoses

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Important Brief Summary

What is SYMTUZA® Used For? SYMTUZA® is a prescription medicine that is used without other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who: • have not received anti-HIV-1 medicines in the past, or • when their healthcare provider determines that they meet certain requirements. HIV-1 is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). It is not known if SYMTUZA® is safe and effective in children under 18 years of age. Take SYMTUZA® exactly as your healthcare provider tells you. Do not change your dose or stop taking SYMTUZA® without talking to your healthcare provider. If you have difficulty swallowing, the tablet may be split using a tablet-cutter. After splitting the tablet, the entire dose (both halves) should then be taken right away. Do not miss a dose of SYMTUZA®. When your SYMTUZA® supply starts to run low, get more from your healthcare provider or pharmacy. This is very important because the amount of virus in your blood may increase if the medicine is stopped for even a short time. The virus may develop resistance to SYMTUZA® and become harder to treat. What are the most serious risks with SYMTUZA®? SYMTUZA® can cause serious side effects including: Worsening of hepatitis B virus (HBV) infection. Your healthcare provider will test you for HBV before starting treatment with SYMTUZA®. If you have HBV infection and take SYMTUZA®, your HBV may get worse (flare-up) if you stop taking SYMTUZA®. If you stop taking SYMTUZA®, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection or give you a medicine to treat your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking SYMTUZA®. What are the important warnings? • SYMTUZA® may cause severe liver problems that can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, vomiting, or stomach area pain • SYMTUZA® may cause severe or life-threatening skin reactions or rashes. Stop taking SYMTUZA® and call your healthcare provider right away if you develop any skin changes with the following symptoms: fever, tiredness, muscle or joint pain, blisters or skin lesions, mouth sores or ulcers, and/or red or inflamed eyes, like “pink eye” (conjunctivitis) • SYMTUZA® can cause new or worse kidney problems, including kidney failure What should I tell my healthcare provider? Before taking SYMTUZA®, tell your healthcare provider about all of your medical conditions, including if you: • have liver problems (including hepatitis B or hepatitis C) • have kidney problems

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

• Are pregnant or plan to become pregnant. SYMTUZA® should not be used in pregnant women. It is not known if SYMTUZA® will harm your unborn baby

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

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with SYMTUZA®. Keep a list of your medicines to show your healthcare provider and pharmacist. Do not start taking a new medicine without telling your healthcare provider. Who should not take SYMTUZA®? • Do not take SYMTUZA® with any of the following medicines: alfuzosin, carbamazepine, cisapride, colchicine (if you have liver or kidney problems), dronedarone, elbasvir and grazoprevir, ergot-containing medicines (such as: dihydroergotamine, ergotamine tartrate, methylergonovine), lovastatin or a product that contains lovastatin, lurasidone, oral midazolam (when taken by mouth), phenobarbital, phenytoin, pimozide, ranolazine, rifampin, sildenafil when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin, St. John’s wort (Hypericum perforatum) or a product that contains St. John’s wort, or triazolam • Serious problems can happen if you take any of these medicines with SYMTUZA® What are the possible side effects of SYMTUZA®? SYMTUZA® may cause serious side effects including: • Immune system changes (Immune Reconstitution Syndrome) can happen in people taking HIV-1 medicines • Too much lactic acid in your blood (lactic acidosis) which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat • Diabetes and high blood sugar • Changes in body fat can happen in people taking HIV-1 medications • Some people with hemophilia have increased bleeding with protease inhibitors The most common side effects are: • gas • stomach problems • diarrhea • rash • nausea • fatigue • headache These are not all of the possible side effects of SYMTUZA®. Tell your healthcare provider if you have any side effect that bothers you or that does not go away. What important facts should I know? This information is not complete. To get more information: • Talk to your healthcare provider or pharmacist • Visit www.SYMTUZA.com to read over the FDA-approved product labeling and patient information cp-60855v3

Please read above Important Brief Summary, including important warnings for SYMTUZA®, and discuss any questions you have with your doctor. You may report side effects to the FDA at 1-800-FDA-1088 or to Janssen Products, LP at 1-800-JANSSEN (1-800-526-7736).

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STAY YOU

BE RESILIENT

Your resilience matters. So does your HIV treatment. It’s important to take your HIV medication every day, because missing even a few doses may lead to drug resistance and may cause it to stop working. SYMTUZA® is a treatment with a high barrier to drug resistance to help you keep ﬁghting HIV with just one pill a day. Ask your doctor about

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

PZA504613B.pgs 12.10.2018 16:39

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SPOTLIGHT BY JOE MEJÍA

#ProtectOurCare For many voters, the 2018 midterm elections were a referendum on health care—notably, the Affordable Care Act (ACA, or Obamacare). On November 6, the people spoke loud and clear, and Democrats wrested control of the House of Representatives from Republicans. (A refresher: The GOP-led House spent the last two years trying to weaken the ACA and attacking Medicaid with all its might.) What’s more, even in red states Idaho, Nebraska and Utah, voters passed ballot measures in favor of expanding Medicaid coverage. These victories bring the total number of states that have adopted Medicaid expansion under the ACA to 37, indicating that the electorate doesn’t consider health care a partisan issue but rather a basic human right. A Democratic-led House safeguards such HIV-related programs as the AIDS Drug Assistance Program and Housing Opportunities for People With AIDS. But this doesn’t mean there’s no more work to be done. After all, the current administration is still allowing states to peddle short-term insurance plans that skirt some of the requirements and protections of the ACA—not to mention that drug prices still need to be reined in. Plus, plenty of folks are clamoring for universal health care. But the good news is, the same advocates and activists who got us this far will surely help get us there someday.

Posts may be edited for clarity and/or space. 26 POZ JANUARY/FEBRUARY 2019 poz.com

(Percent saying each as most or second most important issue in vote)

Maxx Boykin

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Serodiscordant couple David Massey (left) and Johnny Lester are engaged.

DAVID AND JOHNNY ARE COMMITTED TO EACH OTHER—AND TO OVERCOMING ANY CHALLENGE TO THEIR UNION.

STEPHANIE ELEY

BILL WADMAN

BY TRENT STRAUBE

RELATIONSHIPS ARE HARD WORK. But when you’re a gay Black couple in the South—both of you sons of Baptist ministers, no less—and you’re both very public on social media, and you’re also developing your own brand while planning your upcoming wedding, and one of you is living with HIV, well, let’s just say the challenges can get a bit extra.

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But none of the pressure has been enough to undo David Massey, 39, and Johnny Lester, 31, aka “David & Johnny,” content creators, event planners, bloggers (including for POZ and Real Health), businessmen, HIV advocates and soon-to-be husbands. They’re also a serodiscordant couple, meaning that one has HIV (David) and the other doesn’t (Johnny). Based in Atlanta, the duo spoke with POZ about their HIV and relationship journeys and what lies ahead in 2019. The interview has been edited and condensed. Congratulations on the engagement! Tell us all about the proposal. David: Did I get down on my knee? [Laughs] No. We were at an HIV function, and I had facilitated a workshop about happy relationships and serodiscordant couples. We were at lunch, sitting down at a table with [actress] Sheryl Lee Ralph, and Johnny looks over at me and says, “I know what I want.” I’m thinking—to know Johnny you have to know that Johnny is always, always thinking about food—and I thought he meant he knows what he wants for dinner because that is always a huge conversation in our household every single day. I thought he got a jump on it that day. I said, “What’s that?” And he says, “You.” I said, “Oh, you already got me.” He says, “I mean, I don’t want to just be your boyfriend or just be your plus one. I want to be your husband. That’s something that I want, and I’m gonna get it.” I looked back at him and said, “OK!” Johnny: Actually, we set a date to be married in 2016 and announced on social media we were engaged. But then we had a moment that challenged our relationship. An infidelity issue came up, and we were blindsided by dealing with it. We decided to take a break from social media for—how long was that, baby? David: About six months. Johnny: Right. One of our big themes is, we say we are committed to destroying the things that try to take us out. So we were like, “We can’t just throw everything away at the fi rst thing that tries to take us out.” We got into therapy and worked through individual and collective issues. I learned things about me that I had brought from my childhood into the relationship that I had not dealt with. And you divulge these personal details in your HIV advocacy and dating workshops? David: Absolutely. We want to be relevant and relatable, and not just to people with HIV or the LGBT community. Our message is broader. Johnny: There’s this concept—maybe it’s the culture in the South or in the African-American community—that what goes on in our house stays in our house. And I just don’t believe in that. The fi rst time we opened our mouths about infidelity was [last year] at an event for MSM [men who have sex with men]. Their jaws just dropped. Social media can be a bad representation of the truth—anyone can look great on social media—so no one knew that truth. But the guys really opened up to us and said, “If you two went

30 POZ JANUARY/FEBRUARY 2019 poz.com

through that and you’re able to be here today, then I need to reconsider what I’m doing.” I think the fi rst time people are in relationship trouble, they’re often like, “I’m out. I’m not doing this any more.” David: We challenge people on how they view relationships. There is a person out there for you, but are you sabotaging yourself—whether it’s your view of HIV or something else? How do you enter into a relationship if you don’t even know the defi nition of what makes you happy in a relationship or how to show up for a relationship? [Editor’s note: See “The Love Series” sidebar on page 37 for their relationship advice and information on their dating mixers.] As a gay Black serodiscordant couple, you must face all sorts of pressure. Johnny: For us, there’s a different twist. You’ve got one sector of the population that says you can’t be gay because you’re going to go to hell. But here in Atlanta, there are a lot of affi rming ministries and openly gay ministers. They hold us accountable, like: “We understand that you’re gay, but as long as you’re living together and not married, then you’re shacking up.” It’s as if you can’t be gay, but if you are

(POSTER) COURTESY OF CDC; (PANEL) COURTESY OF DAVID & JOHNNY

gay, then you have to be doing it the right way. Sometimes, I think the pressure you face comes from trying to ﬁ nd your own, I guess you could call it, identity. You both have fathers who are Baptist ministers. David, your family is from Chicago, and Johnny, yours is from Tennessee. How have your families dealt with the topics of HIV and gay marriage? Johnny: When David and I got together, I had not come out to my family yet. I have family members who are supportive and love us, but my parents haven’t been able to come to grips with the whole my being gay thing. Hopefully, they’ll catch up. But I can’t put my life on pause till they’re comfortable. One thing I learned in therapy is I have to be OK even if they don’t catch up. David: I waited three years after my diagnosis to disclose to them. My mom was very quiet, my older sister hyperventilated, my other sisters cried. My dad was very quiet. My being his only son shook the very core of his foundation. But I reassured everyone I was in great health and staying undetectable. My family has made great strides. My dad still struggles with [the marriage]. I told him, “I’ll love you if you

attend the wedding, and if you choose not to, I will still love you. Our interactions may be a little different because now I’ll have a husband to consider, and if my life ends before his, you all have to go through him for information and you have to be comfortable with that. But if you need to talk I’m here.” He said that did something for him because he thought if he chose not to [attend the wedding] our relationship would change. So do I expect him to attend? I absolutely do. Will he be comfortable? Well, I’m not getting married to make him comfortable. It is my life. And never once has my family been disrespectful to Johnny. They love Johnny. We even go on vacations and have holidays together. And they know Johnny is HIV negative, and I think they look at him and think, “Thank you for making sure that [David’s] on top of his health and taking his medications.” The one thing they can all agree on is that they want to see us happy. Now, do they all agree with the fact that we’re getting married? Absolutely not. Because of their religious beliefs. But we’re doing the work of changing the paradigm of what people believe is socially acceptable and even spiritually acceptable in the LGBT [people] of color community.

STOPPING HIV STIGMA TOGETHER With help from Instagram posts and the CDC! Last year, the U.S. Centers for Disease Control and Prevention (CDC) relaunched its stigma-busting 2012 campaign titled “Let’s Stop HIV Together.” The posters, ads and videos star a new roster of people who are living with and thriving with HIV—including David and Johnny, an Atlanta-based serodiscordant couple (David has HIV; Johnny does not). To promote the campaign, the duo hosted a viewing party and panel discussion at the Georgia Institute of Technology. “The campaign,” Johnny says, “is one of the best things we’ve ever done.” Stigma refers to the negative attitudes and beliefs about HIV that can keep people from getting tested, taking meds and enjoying their best possible lives. David knows firsthand its damaging effects. When he was younger, he witnessed his family serve food on a separate set of dishes to a relative who had HIV. Years later, when he tested positive for the virus, he vowed that no one would know his status. Lucky for everyone, he changed his mind. “I realized that if stigma was going to be broken, it had to start with me,” David told POZ. “I had to reveal some things about myself that I previously said I wouldn’t to my family, friends and coworkers. When I did, it was the most liberating thing I could have ever done.” But, he adds, “I’m just one side of the equation; my partner has to live with this too.” Johnny has no qualms about using their public platforms, including personal Instagram feeds and other social media, to fight HIV stigma. “I want everyone to know that I already know [about David’s status] and that I’m comfortable with it,” he says. “I want people to know that life is more than a pill for a person who is HIV An Instagram post and the positive. They need to see David like a rock star. I want CDC campaign people to know that David and Johnny are fine. They’re and panel living their best lives!” discussion

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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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“WE’RE CHANGING WHAT PEOPLE BELIEVE IS SOCIALLY AND SPIRITUALLY ACCEPTABLE. WE CHALLENGE HOW THEY VIEW RELATIONSHIPS.”

STEPHANIE ELEY

Johnny: Unfortunately, in our culture, Black, gay and HIV automatically get grouped into poverty—it’s a socioeconomic status issue. We’re determined to change that perspective. I don’t want people to see us as damsels in distress. I think not enough storylines are going on in the LGBT [people] of color with HIV community. We’re always reduced to being flamboyant—and I’m over-the-top too, and I love my designers and nice things—but I was at an event with David, and they were having a twerking contest, and I was like, “Why are we twerking?” I don’t mind twerking; it has its place. But where are the gay Black businessmen and CEOs? David has done so many amazing things—We met the pope together! Case closed. Drop the mike!—but those types of stories don’t get shared enough. But if you twerk or vogue, you get all the attention. We have to change that narrative. How did you guys meet the pope? David: I have a friend, Cheryl Porter, who [is originally from Chicago] but has been a singer in Italy for over 20

years. The Vatican called her management [about doing a holiday music special]. She called me and said, “Do you think you can come over and sing with me for Pope Francis.” I said, “Um…yes!” She said, “Does Johnny sing?” I said, “He doesn’t like to, but I’ll make sure he does,” so he [was invited too]. It was amazing. People were there from all over. We spoke different languages and dialects, but when we got onstage in the rehearsal hall, it all came together. Music really is a universal language. Under your “David & Johnny” brand, you founded Hiclass Management. Tell us about that. Johnny: It’s a boutique event company we developed. One facet is we do over-the-top parties and events, like an MTV Cribs–style birthday party or wedding. Another facet is awareness events and marketing. David travels speaking at different conferences, and our three-city relationship tour, “Cocktails & Conversations,” was financed under Hiclass Management. What I love about the David & Johnny brand is that we love each other. We’re not two guys doing this for

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the looks of it. I can say that honestly, this is my friend and the person I truly love. In addition to all of this, there’s Hiclass Blends, your loose-leaf tea company, and you each have your own full-time job. What are your day jobs? David: I work in the public health sector. Johnny: I work in marketing and branding. I comanage a mental health ﬁ rm and work with a clinical psychologist, Dr. Sherry [Blake]. She had been a clinical psychologist for over 30 years, and in 2011, she got a call from Grammy Award winner Toni Braxton to be part of her reality show, The Braxton Family Values, and I built her platform from there. We’ve done The Real Housewives of Atlanta, Love & Hip Hop, Little Women [the reality series that stars a group of, well, little women]. I have other clients as well. Aside from the wedding, what else is coming up in 2019? Johnny: Our big thing is, we want to do a relationship talk tour. And we want experts to come out and help us educate. We want to speak from our experience but also give professional opinions too. Fingers crossed. David: People who usually ask us about the wedding ask, “Have you bought a home, and have you thought about children?”

BOTH IMAGES: COURTESY OF DAVID & JOHNNY

And? David: As far as children go, we have not agreed on anything. [Laughs] Johnny: We haven’t agreed on how the children are going to come about. We have two different concepts. That brings us back to the wedding. How are you envisioning the big day? Johnny: David and I have been together almost six years. When you get older, you get wiser and your focus changes. We could do something over-the-top, but for me, I think about the issues I’ve had with my family and certain people, and I feel like I want something that celebrates my love for David but is meaningful to the community. The plans are still in the works. Just know that whatever it is, it’s going to be high class. David: Our foundation is built on advocacy. We believe our union is a testament to discordant couples and their inﬁnite possibilities. ■

From top: Attendees at the “Cocktails & Conversations” dating and relationship Q&A mixer in Nashville and “How to Get and Keep a Man” in Atlanta

“THE LOVE SERIES” David & Johnny’s 3 Cs to a successful relationship As “relationship influencers,” David and Johnny take their brand and know-how on the road through a series of mixers and workshops. A few examples from last year: “The Dating Game: How to Get and Keep a Man in 2018,” held in partnership with AID Atlanta and specifically for Black men who have sex with men, and “The Love Series: Cocktails & Conversations,” a dating and relationship Q&A mixer held in Nashville. “The great thing about Nashville,” Johnny recalls, “is that we had gay, straight, bi, male, female, everything. Relationships are versatile, and we go over fundamental things.” “And for people living with HIV or at risk for HIV,” continues David, “the message is that serodiscordant couples exist and that it is possible.” He’s referring to couples like him and Johnny, in which one person is living with HIV (in this case, David) and the other is negative. “I want the community to know that you can find love no matter what your status is,” David says. “You are valuable enough to be loved.” “One thing we get asked in our workshops is, ‘How do you all keep it together?’” Johnny says. “We like to introduce people to David & Johnny’s 3 Cs of relationships: Consistent Communication will keep you Connected.” “We get that life happens and it’s busy for most of us,” David adds. “However, we believe uninterrupted face-to-face communication is the glue that holds healthy relationships together. The conversations should be about all things and should occur consistently. It’s not about agreeing on everything but about maintaining a strong bond with or connection to your partner that will keep the love alive even in the tough times when you might not see eye to eye.”

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THE ROAD AHEAD FOR HIV CURE RESEARCH TODAY, WITH BETTER UNDERSTANDING OF THE COMPLEX TASK AT HAND, CURE RESEARCHERS ARE INVESTIGATING MULTIPLE AVENUES AND TAKING THE LONG VIEW. BY BENJAMIN RYAN

BOTH IMAGES: ISTOCK

HIV CURE RESEARCHERS RECEIVED some disappointing news at the July 2018 International AIDS Conference in Amsterdam. Two studies in particular offered a sobering lesson on how extraordinarily complex developing a safe and effective cure for the virus will likely be. As conference a endees learned, researchers behind a randomized trial of an HIV cure method, the largest such study to date, recently found that their efforts failed to reduce viral DNA in human participants. The trial, called RIVER, tested the ìkick and killî strategy that seeks to roust latently infected immune cells from their slumber and then kill them off. Standard HIV medicationsóantiretrovirals, or ARVsówork only against cells that harbor actively replicating virus. These resting infected cells are a chief component of what is known as the viral reservoir, and itís the stubborn persistence of this reservoir that frustrates cure efforts. In a second study presented at the conference, an

antibody treatment that had shown promise in monkeys failed to prompt what is known as posttreatment control of the virus after HIV-positive humans interrupted their ARV therapy. As scientists in this ˇeld recalibrate their expectations, the use of the term ìcureî as a goal for their research is declining. Instead, investigators may seek to induce pos reatment control of HIV, or viral remission, in which a particular therapy would not eradicate the virus from the body but rather suppress HIV over an extended period without the need for long-term ARV treatment. Nevertheless, the overall ˇeld is generally still referred to as HIV cure research.

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Taking the pulse of her fellow HIV cure researchers, Sharon R. Lewin, MD, PhD, director of The Peter Doherty Institute for Infection and Immunity at the University of Melbourne in Australia, says, “If anything, there was probably more optimism four years ago because we had tried fewer things. We now know that curing HIV is definitely not an easy task.” Looking on the bright side, Lewin points to other promising recent cure studies conducted in primates, noting, “We definitely have been able to cure a few monkeys. That’s exciting.” But as the antibody study presented at the Amsterdam conference indicated, disappointing outcomes among humans might follow success in primate research. “The preclinical studies have universally shown more favorable outcomes than human studies,” says Jintanat Ananworanich, MD, PhD, who in her capacity as the associate director for therapeutics research at the U.S. Military HIV Research Program directs research in the HIV cure field. “Although no strategies have resulted in remission in clinical trials thus far, tremendous knowledge on HIV persistence and immune responses has been generated. This is important to informing future trials.” Concerns about recent setbacks notwithstanding, Lewin remains optimistic about the future of HIV cure research. “Science can also take dramatic turns with significant discoveries too,” she says. “So you never know what may change the field dramatically.” Lewin is the lead author of a literature review recently published in The Lancet HIV, “Barriers and Strategies to Achieve a Cure for HIV,” in which she and her three coauthors offer a comprehensive summary of the impressive number of avenues researchers are pursuing in their quest for a cure, or something close to it. Below, POZ looks at the main takeaways from their paper. We also explore a few HIV cure studies published more recently. LEWIN AND HER COLLEAGUES NOTE THAT THE ONLY person ever cured of HIV remains Timothy Ray Brown. As a component of his treatment for leukemia, Brown received stem cell transplants a decade ago from a donor with a genetic mutation that confers natural resistance to the virus—the surface of the donor’s immune cells lacked the CCR5 coreceptor to which most HIV attaches in order to infect the cells. As far as researchers can tell, Brown benefited from a sterilizing cure. There is no evidence in his body of any virus with the capacity to replicate, and his viral load has never rebounded. (Today, Brown actually takes Truvada [tenofovir disoproxil fumarate/emtricitabine] as pre-exposure prophylaxis [PrEP] to ensure he does not contract HIV again.) Otherwise, in the realm of posttreatment control of HIV, quite a few people with the virus have been able to suppress their viral load for long stretches, sometimes for years, after interrupting standard ARV treatment. A recently published paper found that those who began ARVs very soon after contracting the virus are more likely to achieve such a prolonged state of viral remission after eventually going off their meds. It is likely that beginning on ARVs so promptly

40 POZ JANUARY/FEBRUARY 2019 poz.com

after infection keeps the viral reservoir relatively small, thus reducing the likelihood of latently infected cells springing to life at any given moment following a treatment interruption. One of the most famous cases of such posttreatment control is that of the African child who was treated for HIV for less than a year after birth and, by the time the child’s case was reported in 2017, had spent over eight years in a state of viral remission. In 2015, news surfaced that an 18-year-old French individual had spent 12 years off ARVs and still controlled the virus. Then, of course, there was the 2013 case of “the Mississippi Child”—met with great fanfare—who spent a couple of years off ARVs during her very young life but ultimately, and disappointingly, experienced a viral rebound at 4 years old. According to Lewin, scientists’ increasingly enriched comprehension of the posttreatment-control phenomenon has actually made designing HIV cure studies more difficult. Now researchers must take into account that some study participants might achieve control of their virus, even if for a short time, without the benefit of an investigative cure therapy, thus making it more challenging to prove that a cure treatment was the cause of viral remission or a delayed viral rebound after the interruption of ARV treatment. NOT ONLY DO LATENTLY INFECTED IMMUNE CELLS EVADE ARV treatment, but also for every million such cells, perhaps only 60 harbor virus that can actually replicate; the rest contain defective virus. So finding those resting cells capable of waking up and repopulating the body with new virus in the absence of ARV treatment can be akin to finding a needle in a haystack. The immune system itself wastes considerable energy going after cells infected with dud copies of the virus. In another of the myriad ways HIV has evolved to help ensure it sustains a lifelong infection, latently infected cells have the ability to clone themselves. Perhaps more than half of the viral reservoir cells in some people living with the virus are clones. The matter of whether HIV continues to replicate at low levels in the face of effective ARV treatment has been the source of significant controversy in the cure field. A study presented at the 2018 Conference on Retroviruses and Opportunistic Infections in Boston found no evidence of such ongoing replication in the lymph nodes, calling into question the notable contrasting findings of a 2016 paper. THE LACK OF PRECISE TESTS FOR MEASURING THE VIRAL reservoir remains a considerable obstacle for HIV researchers, both in determining the challenge they face in their quest to vanquish an infection and in assessing how well they did. Currently, scientists in the field must rely on rather crude metrics, such as changes in the overall presence of viral DNA or RNA in the blood, to gauge how a particular treatment affects the size of the reservoir. (HIV carries its genetic code in RNA, which is copied to DNA during infection of a cell.) Such metrics can underestimate the population of infected cells because most virus hides in tissues, not blood. Scientists may also try to measure success by determining

Investment in Cure Research: 2017 Shows Sustained HIV Cure Funding Investments in HIV Cure R&D by Funder, 2015â&#x20AC;&#x201C;2017 (US$ Millions)

2015 2016 2017

164.4

NIH 0

100

150

229.7 200

255

250

US$ MILLIONS 0.2

Aidsfonds

1.0 4.2

amfAR (with Fair Foundation) ANRS

2.3

5.8

7.1

3.9 3.7

Bill & Melinda Gates Foundation

7.0 7.1 7.6

California Institute for Regenerative Medicine

7.0 6.8

3.1 0.2 Campbell Foundation .02 0.8 0.009 Canadian Foundation for AIDS Research (CANFAR) 0.008 0.2 Center for Genetic Engineering and Biotechnology 0.5 2.9 2.9 3.2

Canadian Institutes of Health Research (CIHR) Centre Hospital Universities Sainte-Justine 0.01

3.8

Eurpean Commission (EC)

2.0

4.5

German Federal Ministry of Education 0.7 and Research 0.3 Government of France 0.07 NHMRC 0.3 0.8 National Health and Medical Research Council 0.7 Sidaction 0.1 0.2 0.9 Sumagen Canada 0.08 2.1

0.5 0.5

Swiss National Science Foundation (SNSF)

1.3 1.4

U.K. Medical Research Council (MRC)

1.9

0.4

U.S. Centers for Disease Control and Prevention (CDC) U.S. Military HIV Research Program

0.1 0

1.7 2

Source: Global Investment in HIV Cure Research and Development in 2017 published by the International AIDS Society Towards an HIV Cure initiative

US$ MILLIONS

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US$ MILLIONS

whether an HIV cure treatment is associated with a delay in viral rebound after an interruption of ARV therapy and whether such a treatment is associated with a particular level of control of the virus in the absence of standard ARV therapy for the virus. If only scientists could identify a specific biomarker, such as a particular protein, that could predict the likelihood of a delay to viral rebound or control of the virus after a treatment interruption. Then, study participants might be spared the burden of interrupting their ARVs, a common requirement in HIV cure study designs. Asking people to stop standard HIV treatment raises ethical questions and may discourage people living with the virus from entering cure trials. That said, multiple studies have indicated that treatment interruptions in cure studies are safe. Lewin argues that such a tidy biomarker would likely attract greater investment in the field from pharmaceutical companies. (Global funding for public sector HIV cure research increased from $88 million in 2012 to $289 million in 2017, with the lion’s share coming from the National Institutes of Health.) Such for-profit companies prefer study designs boasting a level of simplicity that will help an investigational treatment pass muster with regulatory bodies like the Food and Drug Administration. They also prefer efficient investments for their research and development dollars. So their researchers favor clearly delineated, objective means of measuring success in clinical trials of experimental agents. Case in point: The recent discovery of a biomarker that can predict whether an individual will achieve a functional cure of hepatitis B virus (HBV) gave rise to a surge of interest from the pharmaceutical industry in researching curative therapies for HBV.

AVENUES OF RESEARCH:

Stem cell transplants Clinicians are still trying to replicate the success of Timothy Brown’s HIV cure with similar strategies. In recent years, a number of other individuals with cancer have received stem cell transplants from donors who also have the genetic mutation related to the CCR5 coreceptor that confers resistance to the virus. One of the six such individuals whose cases have been published in scientific literature experienced a viral rebound; the other five ultimately died as a result of complications following their stem cell transplant or from their underlying cancer. In other cases of people living with HIV who received a stem cell transplant but from a donor who lacked the CCR5related genetic mutation, the stem cell transplant did delay the time to viral rebound by 3 to 10 months after the individuals stopped ARVs. However, the high fatality rate following transplantation highlights how impractical, not to mention unethical, this

42 POZ JANUARY/FEBRUARY 2019 poz.com

Current Research Investment 2012–2017 (US$ Millions)

300

268.0

288.8

250

201.8

200

160.8

150 100

88.1

104.7

50 0

2012

2013

2014

2015

2016

2017

Both charts are from a report titled Global Investment in HIV Cure Research and Development in 2017 published by the International AIDS Society Towards an HIV Cure initiative. Funding sources do not include cure investments from the pharmaceutical industry.

method of attempting to cure HIV is for anyone not already facing a high risk of death due to cancer. Gene therapy Seeking safer alternatives to cancer-treatment-based stem cell transplants, researchers are experimenting with geneediting techniques that alter the DNA of an individual’s immune cells. In particular, the scientists will try to deactivate the gene that gives rise to the CCR5 coreceptor, thus robbing HIV of a means of latching onto immune cells. The modified cells are then grown outside the body and ultimately reinfused into the person’s body. The aim is to spawn a population of immune cells that are resistant to infection. As the field of gene editing rapidly evolves, it is hoped that new, even more cutting-edge technology will facilitate progress on the HIV cure front. “Kick and kill” The method of waking up latently infected cells (the “kick” part) and then finishing them off (the “kill” part) has yielded some notably disappointing results of late, including those of the RIVER study that was presented at the July conference in Amsterdam. Researchers pursuing this strategy have looked to various cancer drugs known as HDAC inhibitors as the kick element; but thus far, they have not been able to show such drugs can actually diminish reservoir cells. Lewin remains cautiously optimistic about further research into these medications, noting that the RIVER trial

used a less advanced and relatively weak kick agent. Recent, more preliminary studies that have examined other kick agents, such as so-called TLR agonists, have shown far greater promise. On this front, Gilead Sciences is investigating a drug known as GS-9620 that has shown positive results in primate research. Latency silencing: “block and lock” Effectively the opposite of the kick and kill strategy, the “block and lock” method, also known as latency silencing, is based on the presumption that if rooting out and killing all the latently infected cells in the body is too challenging, keeping them in a silent state indefinitely may be a viable alternative. A recent study conducted in mice sought to inhibit a viral protein known as tat that acts as an on-off switch for viral replication in cells. The study successfully reduced the amount of HIV RNA expressed in tissue biopsies taken from the animals, and it delayed viral rebound after the interruption of ARV treatment. Enhancing the immune system Researchers are investigating whether vaccines can be used to prompt the body to better control the virus. Scientists have also invested considerable energy into studying so-called broadly neutralizing antibodies, which are natural antibodies that boast the capacity to combat a wide array of HIV strains. Research has indicated that some of these antibodies are associated with a delay in viral rebound after an ARV treatment interruption. Recently, scientists have gone high-tech by synthesizing three such antibodies into one “trispecific” antibody—a kind of all-in-one triple combination therapy—that has already shown promise in its use as pre-exposure prophylaxis (PrEP) among primates. Modulating the immune system Scientists are seeking to manipulate proteins that redirect the traffic of immune-fighting cells. One such example is an antibody called vedolizumab that targets a protein on the surface of CD4 cells and stops these cells from moving into the gut, where HIV focuses much of its assault on the immune system. An initial study in monkeys reported two years ago provided hope for progress in this area of research, but scientists recently repeated the study and found that the antibody had a null impact on the second go-round. Preliminary results in humans also showed that vedolizumab did not affect the time to viral rebound after individuals interrupted their ARV treatment. Looking to the future In all likelihood, a successful HIV cure, or posttreatment control, strategy will rely upon a combination approach based on a number of the methods currently under investigation or those yet to be imagined. “It is clear that achieving HIV remission will not be easy and that one should not expect any single intervention to

help people get to remission,” says Jintanat Ananworanich. “We are taking small steps in discovery science.” Any successful method will need to be safe, effective and— if it is to make a significant dent in the global epidemic— scalable. An HIV cure therapy that is extraordinarily expensive thanks to, for example, the highly involved and complex process required to provide personally tailored genetic editing of an individual’s immune cells, will have little to offer poorer nations—in particular those in sub-Saharan Africa—where the need is greatest. Curative hepatitis C virus (HCV) treatment, for example, costs tens of thousands of dollars in the United States, which has led insurers to restrict coverage of the medications. The actual cost to manufacture such medications, however, is relatively low, which allows for a steep sliding scale elsewhere around the world. The future of HIV cure science is also up against the phenomenal success of ARV treatment, which has set a high bar for any alternative means of suppressing the virus. The life expectancy of those on ARVs is approaching normal. What’s more, the risk of transmitting HIV is effectively zero for those who maintain a fully suppressed viral load. However, such benefits don’t speak to the psychic costs of living with a highly stigmatized lifelong infection or how a cure therapy may alleviate such burdens. Then there are the extreme difficulty and expense of getting the global population on lifelong ARV treatment. Also, even well-treated HIV is associated with an increased risk of numerous health conditions, such as cardiovascular disease and cognitive decline. Some form of HIV cure could help address these problems. However, as HIV drug development continues to progress and long-acting injectable treatments, or even very long-lasting implants, become the standard of care, emerging HIV cure treatments may cease to offer the freedom from daily medications as an advantage over standard ARV therapy. (Or perhaps by then, long-acting antibody treatments will be the norm.) Furthermore, if someone is in a state of posttreatment control of the virus, what reassurances will there be that the virus will remain dormant indefinitely and won’t suddenly surge back and make an individual unwittingly infectious? How frequently will people benefiting from viral remission need viral load monitoring? These pressing questions, along with HIV’s extraordinary complexity, likely make for a long and winding scientific road ahead. But thanks to the increasing funds backing such research and a growing army of top-tier scientists doggedly pursuing a cure, the future will hopefully prove bright with new developments. Still, this field isn’t simply concerned with a binary outcome of finding the holy grail of a cure or otherwise failing to do so. Success will likely prove incremental, with scientists eventually discovering new means of further mitigating HIV’s long-term harms, further transforming a once surely fatal infection into an increasingly innocuous presence in the body and around the world. ■

poz.com JANUARY/FEBRUARY 2019 POZ 43

HEROES BY ALICIA GREEN

Guy Anthony had for some time suspected that he might have HIV, but it wasn’t until 2007, while living in Los Angeles, that the activist and author tested positive. “I was exploring this new city, and I was hit with this diagnosis,” says Anthony, who currently resides in New York City. “I didn’t have the language or the tools to deal with that at age 21.” With his life spiraling out of control because of drug use, Anthony returned to his native Detroit for three months to recover. In 2009, he moved to Atlanta and began volunteering with AID Atlanta’s now-defunct Evolution Project, a program designed to fight HIV among young Black gay men. “The Evolution Project was the first time I was ever able to articulate my gayness in a space and have it be OK,” he explains. “To really be immersed in a community-based AIDS service organization where young Black gay men were essentially running the space was an eye-opener.” Anthony’s nearly three years of service to the project inspired his 2012 book, Pos(+)itively Beautiful: A Book of Affirmations, Advocacy & Advice. “I gathered a group of Black gay men that I knew were living with HIV and I interviewed them,” Anthony recalls. “I had them write letters to their pre-diagnosis selves and gave them the voice to tell their own story.” When he moved to Washington, DC, in 2013, Anthony volunteered with the Black AIDS organization Us Helping Us, where he was eventually hired as program manager and coordinator for its treatment adherence program. “I was responsible for working with newly diagnosed and treatment patients who really didn’t understand how the medication was affecting their bodies,” says Anthony. In addition, he spent four years as a member of the Metropolitan Washington Regional Ryan White Planning Council. Anthony is now the president of Black, Gifted & Whole, a nonprofit he founded in 2015 to empower, educate and mobilize Black queer men through sexual health awareness, higher education and access to resources. “It started from us honoring Black gay men and giving out one scholarship to us helping 11 Black gay men with scholarships to attend and continue college,” he explains. He also serves as an ambassador for Janssen Pharmaceuticals and the AIDS Healthcare Foundation. For his advocacy, Anthony has been named to the 2014 POZ 100 and received the 2016 DC Black Pride Leadership Award, among other notable honors. He intends to continue working with the media to demonstrate that people can achieve their goals while living with HIV. “There is a light in each one of us,” Anthony says. “You cannot allow this diagnosis to dictate the rest of your life.”

44 POZ JANUARY/FEBRUARY 2019 poz.com

Guy Anthony advocates for Black queer men.

BILL WADMAN

Positively Beautiful

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2019 HIV/AIDS AWARENESS DAYS Annual awareness days help educate the general public and specific communities about HIV/AIDS. Since the virus affects people from all walks of life, the number of awareness days has increased over the years. Display this calendar to remind you of upcoming awareness days, and use the hashtags shown to promote them on social media. To find out more information about the various HIV/AIDS awareness days, visit poz.com/awareness-days.

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National Native HIV/AIDS Awareness Day #NNHAAD

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HIV Vaccine Awareness Day #HVAD

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National Youth HIV & AIDS Awareness Day #NYHAAD

National Transgender HIV Testing Day #NTHTD

National Asian & Pacific Islander HIV/AIDS Awareness Day #NAPIHAAD National Hepatitis Testing Day #hepaware

HIV Long-Term Survivors Awareness Day #HLTSAD

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National Caribbean American HIV/ AIDS Awareness Day #NCAHAAD National HIV Testing Day #NHTD

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National Latinx AIDS Awareness Day #NLAAD

World AIDS Day #WAD

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