POZ March 2019

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

H E A L T H ,

L I F E

&

H I V

U=U Undetectable = Untransmittable #ScienceNotStigma #FactsNotFear #UequalsU

IMPORTANT FACTS FOR BIKTARVY®

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

(bik-TAR-vee)

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including:

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

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

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

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

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

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

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

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

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

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

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

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

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

HOW TO TAKE BIKTARVY

Tell your healthcare provider about all the medicines you take:

Take BIKTARVY 1 time each day with or without food.

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

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

} BIKTARVY and other medicines may affect each other.

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

Get HIV support by downloading a free app at

MyDailyCharge.com

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

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

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

visit BIKTARVY.com for program information.

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

Version date: December 2018 © 2019 Gilead Sciences, Inc. All rights reserved. BVYC0102 01/19

PZA506720A.pgs 01.25.2019 19:50

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KEEP ASPIRING.

Because HIV doesn’t change who you are.

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

Ask your healthcare provider if BIKTARVY is right for you.

To learn more, visit BIKTARVY.com.

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

PZA506720B.pgs 01.25.2019 19:50

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CONTENTS

EXCLUSIVELY ON

POZ.COM #UNDETECTABLE SCIENCE, NOT STIGMA

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

Go to poz.com/undetectable for more information and the latest updates.

D

POZ BLOGS

PERSONAL PERSPECTIVES Our roster of bloggers spans the diversity of the HIV/AIDS epidemic. Go to poz.com/blogs to read varying points of view from people living with the virus as well as from HIV-negative advocates. Join the conversation in the comments section.

Find hope and inspiration from others.

D

POZ OPINIONS

COMMENTARY ON HIV/AIDS

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

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

26 UNDERSTANDING UNDETECTABLE EQUALS UNTRANSMITTABLE A growing global community builds a movement. BY OLIVIA G. FORD 36 VIRAL LOAD DOES NOT EQUAL VALUE Ensuring health equity for all people living with HIV. BY CHARLES STEPHENS 4 FROM THE EDITOR Somebody to Love

6 POZ Q+A

Bruce Richman, founding executive director of the Prevention Access Campaign, reflects on both the success and the future of the Undetectable=Untransmittable campaign.

8 POZ PLANET

Get to know Raniyah Copeland • four books exploring themes of women and HIV • AIDS 2020 vs. HIV 2020 • movies that move us, starring Philadelphia

15 EVERYDAY

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

16 VOICES

In “Stigma Over Science,” Mathew Rodriguez makes the case that HIVnegative men are choosing to ignore the

U=U message. And in “POZ Awards 2018,” our editors round up the winners—as voted for by POZ readers.

18 CARE AND TREATMENT

How lungs can go up in smoke faster • Trogarzo can beat drug resistance • hep C’s drag on life expectancy • early treatment for HIV protects the liver

23 RESEARCH NOTES

Pushing the Env • a study on Fostemsavir for multidrug-resistant virus • fighting the reservoir with ABX464 • genetically edited human embryos

24 SPOTLIGHT

The social media buzz on women and U=U

40 HEROES

Mariah Wilberg promotes U=U through Minnesota’s Department of Health.

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. 234. 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.

THIS PAGE: (WILBERG) DAVID BOWMAN; (MAGNIFYING GLASS AND MEGAPHONE) ISTOCK; (SPEECH BUBBLES) THINKSTOCK

Mariah Wilberg helps spread the word about U=U.

Celebrating over 20 years of supporting the HIV community.

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

www.Facebook.com/Serostim

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

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FROM THE EDITOR

I

CANNOT TRANSMIT MY HIV sexually. The reason? My viral load is undetectable. As a result, my HIV is untransmittable via sex. This fact has been proved by science. This fact should help to finally end HIV-related stigma.

As someone who has now lived with the virus longer than I have lived without it— and as someone who tested HIV positive before effective treatment—I can say with all certainty that the idea of Undetectable Equals Untransmittable, or U=U, has given me much-needed peace of mind.

More than I realized, truth be told. I had become used to believing that my virus was a threat; so therefore, I was a threat. I was so used to believing this that I had become numb to the toxicity of it. Being freed of that belief has given me hope. The fear others have of my HIV is the problem, not me.

The sad part of this story is that I knew that already. Anecdotal evidence for U=U has been around for decades. I am not alone in having many anecdotal stories related to U=U. Suffice it to say that this information was believed to be true by many people before now. The groundswell of belief was such that science had to find out for sure.

The happy ending to this story is that we are now on the other side of this quandary. No longer do any of us have to say we believe U=U without proof. Science has verified that undetectable equals untransmittable. U=U is a fact. Now the challenge is communicating the good news to all.

This moment wouldn’t be possible without the science, but even with the data, it most certainly would not have happened without the Prevention Access Campaign, which launched the inaugural U=U messaging in 2016. The activism of its founding executive director, Bruce Richman, and all the early supporters was key to its success.

Undoing dogma is an almost impossible task, but U=U is well on its way to achieving a sea change in how HIV itself and people living with the virus are perceived. For all

4 POZ MARCH 2019 poz.com

U=U

EDITOR-IN-CHIEF

ORIOL R. GUTIERREZ JR. MANAGING EDITOR

JENNIFER MORTON DEPUTY EDITOR

TRENT STRAUBE SENIOR EDITOR

KATE FERGUSON-WATSON EDITOR-AT-LARGE

BENJAMIN RYAN COPY CHIEF

JOE MEJÍA

EDITORIAL ASSISTANT

ALICIA GREEN ART DIRECTOR

DORIOT KIM

those trying to find somebody to love, U=U removes a stubborn barrier. Go to page 26 to read how a global community became a movement and where it goes from here.

Although I am undetectable now and essentially have been since I started HIV treatment, there was a time when I was detectable. A long time, actually. For more than a decade after testing HIV positive, I was not on treatment.

Doubts about the safety and efficacy of treatment were only part of why I declined.

The truth is that I wasn’t mentally ready to commit to daily pills for the rest of my life.

Thankfully, I remained in relatively good physical health during those years, so I didn’t lose too much while I worked out my emotional baggage enough to get on and stay on treatment.

I am eternally grateful I had the time to do so.

About half of Americans living with HIV are detectable. My reasons for being detectable were not unique, but they were also far from universal. For one example: Many people lack access to treatment. How does U=U affect those who are detectable? Go to page 36 to read how we can help ensure health equity for all people living with HIV. This special issue of POZ on U=U would not have been complete without a conversation with Bruce. Go to page 6 for his insights.

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

(GUTIERREZ) JOAN LOBIS BROWN

Somebody to Love

CAN15786-00_p025_HouseAd.pgs 05.17.2018 16:42

POZ Q+A

BY ORIOL R. GUTIERREZ JR.

U=U advocates in 2017 at the International AIDS Society Conference in Paris

TREATMENT IS PREVENTION

B

RUCE RICHMAN IS FOUNDING EXECUTIVE DIRECTOR OF THE Prevention Access Campaign (PAC), which launched the Undetectable Equals Untransmittable (U=U) campaign in 2016. U=U refers to the fact that people living with HIV on effective treatment do not sexually transmit the virus. Since the launch of U=U, a groundswell of research has confirmed that having an undetectable viral load renders people incapable of transmitting HIV to their sexual partners. (Go to page 26 to read more about the science.)

Before launching PAC, Richman was the founder of Inspired Philanthropy Group.

He developed philanthropic initiatives with people and brands, including Donna Karan, Ellen DeGeneres, Archibishop Desmond Tutu, The Bob Marley Foundation, Banana Republic, Sephora, Cartier, professional sports stars and others.

Richman received a master’s in education from the Harvard Graduate School of Education and a doctor of law degree from Harvard Law School. He tested HIV positive in 2003. He learned in 2012 that his undetectable viral load meant he could not transmit the virus, which inspired him to share the good news worldwide.

Why is U=U important?

U=U sets people living with HIV free from the fear of transmission. We have been living with and dying from HIV stigma for over 35 years. U=U is a chance to end that stigma.

U=U is also an incentive to getting more people on treatment. Reducing HIV stigma should lead to more people getting tested for the virus. For those who test HIV positive, U=U is an added incentive to start treatment, stay on treatment and stay in care for their health and the health of their partners.

6 POZ MARCH 2019 poz.com

U=U also helps public health as an argument for increasing access to treatment and services for all people living with HIV. The combination of keeping people healthy, helping them to maintain an undetectable viral load and preventing new HIV transmissions gets us closer to ending the epidemic.

Why is U=U still not widely known?

There are many reasons. U=U is radically at odds with the status quo. This is revolutionary information. It goes against decades of fear of the virus and of people living with HIV, so to unlearn all that is going to take some time.

It will take consistent repetition of the message from influencers in the HIV field and in various communities to move people to accept this is true.

Even when folks accept that it’s true, it is still a challenge to communicate it.

The decisions of whom to communicate it to and how are filtered through prejudice and paternalism, where information providers are deciding which people living with HIV are supposedly responsible

COURTESY OF PREVENTION ACCESS CAMPAIGN

Prevention Access Campaign builds a movement as Undetectable Equals Untransmittable goes global.

enough to get this information. Communities that are already marginalized are being left out of this information.

It’s dangerous to keep the misperception out there that we are a risk. Not only do people living with HIV internalize that message, but people who want to love us, have sex with us and babies with us are getting that message too.

COURTESY OF BRUCE RICHMAN

Tell us about PAC’s U=U strategy.

We’ve successfully advanced the U=U message through advocacy, education and communications.

In early 2016, we collaborated with leading researchers on HI V sexual transmission to issue the first U=U global consensus statement as an advocacy tool. Over 800 community partners from nearly 100 countries have since endorsed the U=U message.

Our advocacy work initially focused on U.S. public health departments and health ministries around the world, as well as major influencer organizations, to update their risk assessments to align with the science. That advocacy has expanded to include updating their treatment guidelines accordingly.

When it comes to education, it’s about helping people understand the science and how to communicate that science.

It’s really not that complex. It’s about TLC. Treatment: stay on treatment as prescribed; Labs: get labs done regularly; and Connection: stay connected to care.

The details are also not difficult. The threshold for U=U is under 200 copies per milliliter, synonymous with viral suppression. U=U only prevents HIV. Condoms help prevent other sexually transmitted infections and pregnancy.

U=U applies only to sexual transmission, not to breast feeding or needle sharing.

U=U may not exempt people with HIV from disclosure laws.

All that said, medicine only works if you have access to it and take it, but that can be hard to do because in many communities the social determinants of health still need to be addressed.

The challenge with communicating U=U is not to convey it in a way that shames people who are not undetectable.

The message should be used as a public health argument to ensure all people can

become undetectable. [Editor’s note: Go to page 36 for more on this topic.]

As for distributing our communications, we have a newsletter with resources that we send out to our partners on a regular basis. We curate the best U=U campaigns and research and fact sheets from around the world. Why reinvent the wheel when there are some excellent materials out there?

We also do media monitoring. Every day we get clips of articles that include references to undetectable or viral load suppression. We aim to correct any inaccurate or stigmatizing language.

Why has U=U succeeded globally?

It’s mind-blowing how fast the U=U movement has grown. It’s a testament to the strength and conviction of people

Bruce Richman

States. Public health departments are leading the way rather than communitybased organizations. There are some groups that have developed U=U campaigns and are training their staff, but we’re seeing a lack of energy, especially on social media, from many groups.

Up to now, it’s mostly just individuals in the United States who are tweeting and sharing U=U on social media.

Strong messaging from federal agencies has helped get us this far, but despite those efforts, we’re finding that U=U still isn’t catching on as much with the community-based organizations.

For example, I was at an HIV conference recently where I was glad that U=U had a plenary session, but among the exhibitors there was only one organization out of many that had any U=U

“U=U sets people living with HIV free from the fear of transmission.”

around the world who are living with HIV and those who care about us.

Just in the past few months, I’ve had calls with folks in Vietnam, Cambodia and Romania. I’m constantly corresponding with people in Australia and New Zealand. I traveled to Canada, where the federal health minister signed the country on to the U=U campaign.

Princess Stephanie of Monaco signed her country on to the campaign. In Osaka, Japan, they had a sexy U=U party. Every week, there’s more exciting U=U news.

The message has been embraced because U=U is a concept owned by everyone. People living with HIV are tired of being treated as disease vectors. We’re tired of having this virus interfere with our relationships and threaten our lives.

What are your hopes for U=U in the U.S.?

We have a lot of work to do in the United

materials. There was, however, a lot of information about pre-exposure prophylaxis (PrEP) and HIV testing.

What we need is for these U.S. groups to be proactive in communicating about U=U. They can’t just send out a statement on U=U once and expect that to have a lasting effect. They have to keep saying it, keep sending things, keep encouraging people and updating websites, just like they’ve done for PrEP. I really hope that the end result of all our collective efforts on behalf of U=U is that we change what it means to live with HIV, so that people who test positive for the virus are seen as just having a chronic condition and not as dangerous people who should be feared.

If we keep increasing our efforts, then all people living with HIV can live happy and healthy social, sexual and reproductive lives without fear. ■

poz.com MARCH 2019 POZ 7

POZ PLANET

BY TRENT STRAUBE

GET TO KNOW RANIYAH COPELAND Three questions for the new president and CEO of the Black AIDS Institute Congratulations on your new post! What are your organization’s top priorities for 2019?

It is an exciting time here at BAI! There have been critical advances in HIV treatment and prevention in recent years, yet Black people have not benefited as much as other folks.

There are huge threats in both the political and cultural landscape as well as a false perception that the epidemic has ended. Our vision for the Black AIDS Institute of tomorrow is an organization that is deeply entrenched in the community, providing Copeland services at all points of the has worked care continuum along with at Planned a well-respected research, Parenthood. policy, mobilization and capacity-building portfolio that is uniquely and unapologetically Black.

Tell us about a program at the Black AIDS Institute you’d like to highlight.

We recently launched the Ambassador Program for Black women to build engagement and movement around HIV and sexual health. The Ambassador Program is a cohort of 20 Black cis and trans women—[some are living with HIV and some are not]—who will receive training about HIV and sexual health. These women will utilize social media to expand knowledge of and access to biomedical tools among Black women [such as pre-exposure prophylaxis (PrEP) and treatment as prevention (TasP)]. The program will destigmatize conversations about sexual health and HIV, normalize utilization of biomedical interventions among Black women and build power among the women ambassadors and their social networks. The cohort will be announced on National Women and Girls HIV/AIDS Awareness Day [marked on March 10].

What draws you to this work?

I was raised by radical Black parents who instilled in me that honoring the lives of my elders who struggled and sacrificed for my freedoms meant that I too had to struggle and fight to gain freedoms for myself and other Black people. Ensuring that Black people are able to live long, healthy lives has always been my passion. Out of undergraduate school, I was working at Planned Parenthood, where I con-

8 POZ MARCH 2019 poz.com

ducted HIV testing. I gave my first HIV diagnosis to a young Black gay man, and I’ll never forget the inevitability of HIV acquisition and hopelessness he told me he felt upon his diagnosis. The lives of Black folks living with HIV matter to me. The lives of Black gay men matter to me. The lives of Black trans

women matter to me. The lives of Black people matter to me. None of us are expendable. I’m honored to fight for the many, many people who are no longer here to fight and to be in a movement that epitomizes freeing people from HIV and AIDS regardless of their race, class, gender or who they love.

WOMEN’S STUDIES

(COPELAND) COURTESY OF BLACK AIDS INSTITUTE; (THE TRIUMPH IN ME) CREATESPACE INDEPENDENT PUBLISHING PLATFORM; (MY AMERICAN HISTORY) ROUTLEDGE; (RECYCLED HUMAN) AMAZON DIGITAL SERVICES; (TRANS FIGURED) SKYHORSE PUBLISHING; (RECYCLED HUMAN ILLUSTRATION) YEVHENII BILIAVSKYI

March 10 marks National Women and Girls HIV/AIDS Awareness Day. These reads offer related insights.

The Triumph in Me

by Kashinda T. Marché In this fastpaced urban novel, the streetwise and insightful Tharisse is a teenage mom when she learns she has contracted HIV from her baby’s father, who soon abandons them.

“I am so angry my life turned into a damned mockery,” she says, determined to overcome poverty, mental illness, dysfunctional families and other challenges that read as both pulpy plot elements and raw realness.

My American History: Lesbian and Gay Life During the Reagan and Bush Years (Second Edition)

by Sarah Schulman This collection of articles, essays and speeches by AIDS activist, journalist and historian Schulman spans 1981 to 1993 and covers topics that range from Lesbian Avengers to drug trials for pediatric AIDS. This second edition arrives with commentary, a new preface and a 2018 interview that add context.

Trans Figured: My Journey From Boy to Girl to Woman to Man

by Brian Belovitch In 1987, Natalia Gervais tested positive for HIV in New York City.

At 31, she had experienced life as a club performer, addict, sex worker and, for a brief time, the wife of a U.S. Army service member. She was also transgender— born Brian Belovitch.

After the HIV diagnosis and with the aid of therapy and sobriety, Belovitch retransitioned to male. His memoir focuses mostly on Natalia’s wild and decadent days, but his insights into the fluidity of gender and sexuality emerge as way more compelling material.

Recycled Human: The Reality of Re-Entry by Glenna McCarthy Her first memoir, Damaged Goods, recounted battles with sex work, addiction, HIV and hep C. Here, McCarthy now focuses on the challenges of reentering society while dealing with sexism, anxiety, posttraumatic stress disorder and past incarceration.

Fun illustrations complement her tell-it-like-it-is writing style.

Visit her POZ blog to read an excerpt about riding public transit while drug-free.

POZ PLANET

BY TRENT STRAUBE

AIDS 2020 VS. HIV 2020

San Francisco and Mexico City host competing conferences.

12 POZ MARCH 2019 poz.com

stigma and fear. This is a rare moment to put HIV and those most affected, including people of color, minorities and the economically disadvantaged, at the center of political discussion. It won’t be easy, but we will rise to the challenge and work together—as we always have— on fighting prejudice, racism, sexism and isolationism wherever it happens.”

Critics were not persuaded. In fact, they decided to host an alternative, overlapping conference to be held July 6 to 8, 2020, in Mexico City for folks who cannot or will not attend the U.S. event (slated for July 6 to 10). The full title of the conference is HIV 2020: Community Reclaiming the Global Response. It’s spearheaded by MPact Global Action for Gay Men’s Health and Rights, the International Network of People who Use Drugs and the Global Network of Sex Work Projects; as such, HIV 2020 promises to retain a community-based, sex-positive interdisciplinary focus.

Since HIV 2020 was announced in December, it has received endorsements and pledges of support from all the U.S.-based national networks of people living with HIV. These include: Positively Trans, the Positive Women’s Network–USA, Thrive SS (representing African Americans) and the U.S. People Living with HIV Caucus.

The rift between AIDS 2020 and HIV 2020 continues to be felt. “The global HIV community is getting a divorce,” wrote blogger Mark S. King on the topic.

“The community-based groups have officially broken away from the scientists, researchers and the privileged, monied establishment that largely comprise the IAS. The HIV 2020 announcement, as triumphant a development as it represents, is dampened somewhat by a sad feeling of disillusionment.”

Who knows how this will play out?

Ever the optimists, we hold out hope for a rekindled romance, or at the very least an amicable settlement.

POZ POLL: Should the international AIDS 2020 conference be moved out of the United States?

NO

40%

YES* 60%

* When this poll was first asked a year ago, 65 percent of respondents said yes, and 35 percent said no, meaning support for moving the AIDS 2020 conference has dipped slightly.

BOTH IMAGES: ISTOCK

Is the global HIV community experiencing irreconcilable differences? When it was announced in March 2018 that the next International AIDS Conference, known as AIDS 2020, would take place in Some activists San Francisco and don’t want a nearby Oakland, conference held on U.S. soil. the pushback was swift. Global HIV activists penned a letter to the International AIDS Society (IAS, which organizes the conferences) and demanded the event be moved off U.S. soil because “those most affected

by HIV within and outside of the U.S. are, at best, excluded and, at worst, put in harm’s way by holding the conference in San Francisco.” Specifically, they noted that U.S. discriminatory immigration and travel policies under Trump target populations affected by HIV, including people from Muslim, African, Caribbean and Latin countries as well as sex workers and people who use drugs.

IAS did not change course. But AIDS 2020 cochairs and leaders penned an open letter to their critics (you can read it in full on POZ.com). “With the selection of the Bay Area for AIDS 2020,” they wrote, in part, “we have the chance to elevate U.S. and global HIV concerns onto the national and international stage. That includes shining a spotlight on and working to reform unjust policies that restrict entry into the U.S. and other countries and perpetuate a climate of

MOVIES THAT MOVE US Recognize the films pictured on this page? Chances are you do. In a recent Facebook post, POZ readers listed these titles as HIV/AIDS-themed movies that strongly affected them. The conversation was spurred by the fact that 25 years ago, Tom Hanks won an Oscar for playing a lawyer with AIDS in Philadelphia, widely considered the first mainstream movie to address the epidemic. One wonders what would be listed 25 years from now—perhaps more recent and diverse offerings, such as Bohemian Rhapsody, BPM, Quiet Heroes, Memories of a Penitent Heart and 1985. The Philadelphia anniversary inspired POZ blogger Bob Leahy to recount his recollections of that film. The post is excerpted below:

(LEAHY) COURTESY OF BOB LEAHY

How Philadelphia Changed My Life I went to see the movie Philadelphia in early 1994. It changed my life. I was diagnosed with HIV in September 1993. It was numbing rather than horrific.

I was working in the senior ranks of one of Canada’s banking giants, and—like lawyer Andrew Beckett, who was played in the movie by Tom Hanks—I did not want my employer to know. Like Andrew Beckett, I tried to muddle through. Like Andrew Beckett, my health got the better of me and I had to somehow exit from the workforce. Like Andrew Beckett, I saw injustice all around me—and I became an activist.

No longer content with keeping quiet about my illness, I told friends, neighbors and colleagues that I was HIV positive. It was a giant step for me.

I knew my diagnosis represented a death sentence, yet I was hesitant to try to figure out what to do. How the rest of my life would play out seemed entirely unfathomable.

Confiding in my banking circle seemed out of the question, but how then to continue to handle a heavy and stressful workload when I knew I was dying? It seemed a problem with no solution—until I saw Philadelphia. Sure, I could hardly see the screen through the tears—everyone with a heart cries at Philadelphia. But I left with a plan and a newfound sense of bravery.

Andrew Beckett had inspired me like no movie character before or since.

Bob Leahy

POZ POLL: Has an AIDS-themed film ever strongly affected your life?

NO

18%

YES 82%

poz.com MARCH 2019 POZ 13

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ESA

EVERYDAY

BY JENNIFER MORTON

March 1

Artist HUGH STEERS dies of AIDSrelated complications. (1995)

3

(HUGH STEERS) COURTESY OF VISUAL AIDS; (BOOTIES AND CONDOM) ISTOCK; (JOHNSON) DREAMSTIME.COM /LAURENCE AGRON

Scientists announce that an HIV-positive child appears to have been functionally cured of HIV (i.e., no detectable virus without antiretroviral therapy). Known as the BABY,” “MISSISSIPPI BABY the child sees her virus rebound the next year, and she resumes HIV treatment.

(2013)

10

NATIONAL WOMEN AND GIRLS HIV/AIDS AWARENESS DAY

19

The U.S. Food and Drug Administration (FDA) approves the first antiretroviral drug for HIV— ZIDOVUDINE, better known as ZIDOVUDINE AZT. The drug was initially developed to treat cancer. (1987)

20

NATIONAL NATIVE HIV/AIDS AWARENESS DAY

23

President Obama signs the Patient Protection and Affordable Care Act, also known as OBAMACARE. The health care law expands access to care and prevention for all Americans and also offers protections for those living with HIV and other preexisting conditions.

(2010)

25

11

In order to educate others about HIV, ACTIVIST ALISON GERTZ goes public in The New York Times with her story about how she contracted the virus.

A TV movie based on her life, starring Molly Ringwald, aired on ABC in March 1992. (1989)

Nick News with Linda Ellerbee airs “A CONVERSATION WITH MAGIC” on Nickelodeon.

The special episode features Magic Johnson discussing HIV and AIDS with children, including a young Hydeia Broadbent.

(1992)

26

The FDA approves the use of ORAL FLUID SAMPLES with a rapid HIV diagnostic test kit that provides test results in as little as 20 minutes. (2004)

27

The U.S. Department of Health and Human Services issues new HIV treatment guidelines recommending TREATMENT FOR ALL ADULTS AND ADOLESCENTS LIVING WITH HIV, regardless of CD4 count or viral load. (2012)

29

The FDA asks condom manufacturers to begin using THE AIR-BURST TEST on all brands of latex condoms. The new test measures a condom’s strength and may be an indirect indicator of its resistance to breakage during use. (1994)

31

THE BILL & MELINDA GATES FOUNDATION awards a $60 million grant to the International Partnership for Microbicides to support the research and development of microbicides to prevent transmission of HIV. (2003)

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

poz.com MARCH 2019 POZ 15

VOICES

BLOGS AND OPINIONS FROM POZ.COM

STIGMA OVER SCIENCE

HIV-negative writer Mathew Rodriguez penned an opinion piece about U=U titled “HIV-Negative Men Are Still Choosing Stigma Over Science.” It was originally published on Into. Below is an edited excerpt.

H

IV-negative men need to do better. On a purely human level, research data show that HIV-negative men refuse to see HIV-positive people as anything other than a virus floating in their blood. Something’s gone awry.

As a fellow HIV-negative man, I understand the myriad reasons you might not yet believe that undetectable equals untransmittable (U=U).

It’s not actually about learning something new but unlearning lifelong messages that just being gay and loving other men would most likely lead to acquiring HIV. And much of that public health messaging often sold HIV-positive gay men down the river.

Aside from public health messaging, so much of gay male culture revolves around the virus as a shared history.

Movies and plays about the American queer experience often portray the AIDS epidemic to differing effect.

While it can serve as a way to unite the community by exploring our shared history, it can also create trauma.

Every HIV-negative man also has a personal relationship to HIV, unrelated to its public or cultural portrayals.

Though I am not HIV positive, I watched my father, a loving man and a heroin user, die after years of living with HIV as well as an array of coinfections.

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Though it’s easy to see the root of this long-held stigma, that doesn’t excuse its survival. In the era of U=U, believing that HIV-positive people with an undetectable viral load can pass the virus is akin to denying climate change.

The scientific consensus is there. It’s you who are choosing to ignore it based on your own firmly held beliefs.

Yes, as queer men, we have trauma around HIV and that trauma needs to be respected. But for you HIV-negative men who decide your trauma is more important than an HIV-positive person’s personhood, it’s important you acknowledge that the problem is your stigma, not a person’s virus.

When I’ve said this online in the past, I’ve gotten pushback from HIV-negative men saying that I’m telling people whom they have to sleep with or that I’m saying they’re a bigot for making choices about their own body. That’s not the case. What I am saying is that there is an array of methods at your disposal for lowering your risk of acquiring the virus. There are condoms, PrEP [pre-exposure prophylaxis], PEP [postexposure prophylaxis] and HIV treatment. But fear and stigma are not forms of protection. Your fear will not prevent you from acquiring anything. Holding on to it is doing nothing but creating a gap between you and other queer people,

and it’s your duty to let go of your fear, not only for yourself but also for the HIV-positive people it harms.

Fear of HIV continues to wreak havoc on the lives of people living with HIV. While advances in medicine have made life with HIV easier in many ways, stigma and fear around the virus have failed to diminish at the same rate. Aside from individual interactions with HIV-positive people, the amount of fear in the world continues to make it easy for politicians and people in the criminal justice system to punish those who have HIV just for living. Your fear is not just your own; it perpetuates a societal viral divide that we should be dismantling, not buttressing.

It takes a ton of work to overcome stigma and trauma, but a beautiful phenomenon awaits on the other side of stigma. When you do the work to unlearn it, you make room to recognize the humanity of HIV-positive people and you make room for deeper intimacy and connection. For too long, the work of forging this connection has been left to HIV-positive people, who have had to deal with HIV medically and socially. But the fight can’t be theirs alone. If research data highlight anything, it’s that HIV-negative people are refusing to do the work, even when we’re the ones causing the harm. ■

POZ AWARDS 2018 In an article titled “POZ Awards 2018 Winners,” the POZ editors compiled the winners of the Third Annual POZ Awards, which spotlighted the best representations of HIV/AIDS in media and culture. Below is an edited excerpt.

H

ere are the winners of the Third Annual POZ Awards as voted for by POZ readers.

Congratulations to all!

Best Celebrity Advocate: Karl Schmid The ABC newscaster won our hearts when he came out as HIV positive via a heartwarming social media post.

He inspired people living with HIV the world over and then promoted the U=U message in media interviews.

BOTH IMAGES: ISTOCK

Best in Film or Television: 1985 Yen Tan’s simple black-and-white portrait of a gay man living with HIV coming home to see his family—and unearthing their secrets—created a stir on the independent film festival circuit.

The titular year tells you everything you need to know about this human drama.

Best Actor or Actress in Film or Television: Cory Michael Smith (1985) As a gay man living with HIV returning home to make peace with his troubled childhood and family, Smith is quietly devastating in this underseen film.

Best Video Series: Revolutionary Health (Counter Narrative Project) The Atlanta-based Counter Narrative Project builds power among Black gay men, and the group’s ongoing video

series includes some real talk about dating, pre-exposure prophylaxis (PrEP), happiness, full body massage, HIV treatment and...beards.

Best in Performing and Visual Arts: Cell Count (Visual AIDS) In this Visual AIDS exhibit curated by Kyle Croft and Asher Mones, two dozen artists and performers “unpack the metaphors and assumptions that enable the punishment and incarceration of people living with HIV [with] sardonic humor and imaginative revisions.” The exhibit takes on the criminal justice and health care systems.

Best in Literature, Fiction and Nonfiction: Punishing Disease: HIV and the Criminalization of Sickness (Trevor Hoppe) “Punishing Disease looks at how HIV was transformed from sickness to badness under the criminal law,” writes Hoppe in the intro to his book. The result is a historical look at our discomfort with illness, which, while it predates AIDS, has few harsher examples than the treatment of people living with HIV. Best Media Campaign for People Living With HIV: “Let’s Stop HIV Together” (CDC) This ongoing campaign from the Centers

for Disease Control and Prevention (CDC) produced new content that focuses on HIV stigma. As the campaign title suggests, the CDC believes everyone has a role to play in stopping HIV stigma—regardless of HIV status.

Best HIV Prevention Media Campaign: “Viva PrEP” (Instituto Familiar de la Raza) This gorgeous Spanish-language campaign from the San Francisco– based Instituto Familiar de la Raza offers culturally specific information on PrEP by putting it into the context of a strong family heritage and the importance of pride and holistic health. ¡Que hermosa e importante campaña!

Best Reason to Keep Acting Up: #AIDS2020forAll The International AIDS Society, which produces the International AIDS Conference every two years, is in hot water with HIV advocacy groups for not relocating its AIDS 2020 conference from San Francisco in light of the Trump administration’s assault on immigrants, those seeking asylum and people living with HIV. Activists also decry the fact that sex workers and those with a history of drug use face serious barriers to travel into the United States, leaving in doubt their very attendance at AIDS 2020. ■

poz.com MARCH 2019 POZ 17

CARE AND TREATMENT

BY BENJAMIN RYAN

Trogarzo Can Beat Drug Resistance

HOW LUNGS CAN GO UP IN SMOKE FASTER People living with HIV experience faster decline in their lung function if they smoke, which may put them at higher risk for chronic obstructive pulmonary disease (COPD), an inflammatory lung disease that makes it hard to breathe.

Researchers reached this conclusion by analyzing data regarding 915 HIV-positive participants of the global START trial, which in 2015 proved that beginning HIV treatment with a CD4 count greater than 500 is preferable to delaying until CD4s drop to 350 or below.

These study members were followed for a median of 3.9 years. Twentyseven percent were current smokers. The median age of both smokers and nonsmokers upon entering the study was 36 years old.

The investigators focused their analysis on signs associated with the development of COPD, specifically a test that assesses lung function to determine how much air an individual inhales and exhales and how fast he or she exhales.

“Lung function declines as part of the normal aging process, but we saw fairly clear evidence that smoking cigarettes was associated with much faster decline of lung function—nearly 50 percent faster than in nonsmokers,” says study author Ken M. Kunisaki, MD, medical director of the Minneapolis Veterans Affairs COPD Case Management Program.

“Although we couldn’t test the effects of stopping smoking in our START study,” Kunisaki continues, “data from non-HIV studies have shown that when people stop smoking, this rapid lung function loss returns to normal. Our study provides one more reason for HIV-positive smokers to consider seeking help to quit smoking: in order to optimize their lung health and age successfully.”

18 POZ MARCH 2019 poz.com

The HIV-suppressing benefits of the newly approved antibody treatment Trogarzo (ibalizumab), which is given via intravenous infusion every two weeks, can last for at least a year.

Researchers enrolled 40 people with considerable experience taking antiretrovirals and who had multidrug-resistant HIV into a Phase III study of the treatment. This trial ran for 24 weeks and was followed by an expanded access program during which participants could continue on Trogarzo therapy.

Study author Edwin DeJesus, MD, medical director of the Orlando Immunology Center in Florida, notes that some of the participants “had extremely high viral loads and significantly impaired immune systems.”

During the study, he says, “We observed marked improvements in patients’ health.”

Seventeen participants (43 percent) achieved a fully suppressed viral load 24 weeks into the study. Of the 31 participants who finished the 24-week study, 27 entered the expanded access phase. Twenty-four of them completed the additional 24 weeks of follow-up; of these, 16 (67 percent) had a viral load below 50 at the 48-week mark, including all 15 people who had a fully suppressed viral load at week 24. One additional person had a viral load between 50 and 200 at week 48.

Of those still on treatment, by the end of the expanded access phase, the median reduction in viral load was 2.8log10, or a 99.84 percent reduction.

All 15 of those who entered the expanded access phase with a fully suppressed viral load maintained that status 24 weeks later.

Trogarzo was well tolerated. The most common adverse events, which occurred in more than 5 percent of participants, included upper respiratory infection, diarrhea and rash.

EARLY HIV TREATMENT PROTECTS THE LIVER

ALL IMAGES: ISTOCK

Hep C’s Drag on Life Expectancy People on treatment for HIV have a higher risk of death if they are coinfected with hepatitis C virus (HCV).

Treating hep C lowers the risk.

Researchers analyzed data on 3,056 people living with HIV who were followed for a median of 7.5 years in a pair of long-term studies.

A total of 543 of these individuals had hepatitis C upon entering either study.

The researchers found that if all people with HIV had HCV, 14.7 percent would die during a 10-year period, compared with 10.4 percent dying if none had hep C. This indicated that HCV was associated with a 42 percent increased risk of death during a decadelong period.

If all those with HIV/HCV coinfection were treated for hep C, 14.9 percent would die during a 10-year period, compared with 18.7 percent if none were treated. So treating hep C was associated with a 20 percent reduced risk of death over the span of a decade.

“These findings highlight the need for addressing the hepatitis C epidemic in this population, perhaps by expanding access to direct-acting antiviral medications,” says study author Alex Breskin, PhD, a postdoctoral scholar in epidemiology at the University of North Carolina at Chapel Hill.

Starting antiretroviral (ARV) treatment for HIV when CD4s are still high reduces the risk of liver fibrosis (scarring) compared with waiting to start ARVs until the immune system has deteriorated somewhat.

Researchers analyzed data on 4,580 participants of the global START trial, a randomized controlled study that enrolled people with HIV who had a CD4 count greater than 500. Then they randomized the participants to start ARVs immediately (2,273 people) or wait until their CD4s had dropped below 350 (2,307 people). They followed the participants for a cumulative 14,400 years.

The study members had a median age of 36 years old. Upon entry into the study, 3 percent and 4 percent were coinfected with hepatitis B or C viruses (HBV/HCV), respectively. At this time, 1.1 percent of all participants had been diagnosed with fibrosis.

Starting ARVs immediately, compared with delaying, was associated with a 34 percent lower risk of developing fibrosis and a 60 percent greater likelihood of seeing any elevated liver enzymes normalize during the study.

Other factors associated with a higher risk of developing fibrosis included HBV or HCV coinfection, being male, having a history of alcoholism or other substance abuse, having lower albumin and having higher ALT liver enzymes, total cholesterol and triglycerides.

“Particularly considering the low liver toxicity of currently available HIV treatment regimens, these data support the current guidance to start treatment in all patients with HIV, regardless of how advanced their HIV is or whether they are coinfected with hepatitis B or C,” says study author Nila Dharan, MD, an infectious disease physician at The Kirby Institute at the University of New South Wales in Sydney.

poz.com MARCH 2019 POZ 19

Introducing the new and improved

POZ.com

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

RESEARCH NOTES

BY BENJAMIN RYAN

PREVENTION

TREATMENT

CURE

CONCERNS

Scientists have long pursued an HIV vaccine based on copies of Env, the so-called envelope protein on the virus’s surface, because it would likely prompt a strong antibody response.

But Env is highly complex and shape-shifting, and researchers hadn’t been able to stabilize it until a recent study. In its natural state, Env appears in clusters of three, called trimers.

By modifying a particular section of Env, scientists caused the trimers to remain in a stabilized shape, one that they could produce efficiently. For their vaccine, they attached up to 60 copies of Env trimers to individual nanoparticles that mimic the shape of HIV and exposed them to dozens of viral strains. Next, they gave mice and rabbits such a vaccine. The animals developed an unprecedentedly robust antibody response that neutralized a common viral strain, one that previous vaccines had failed against.

Additional research is under way in monkeys.

ViiV Healthcare’s investigational entry inhibitor fostemsavir helped fully suppress HIV in a majority of 371 study participants with severely multidrugresistant virus. They received the drug with a so-called optimized background regimen—one tailored to work as well as possible based on drug-resistance testing—of other antiretrovirals (ARVs); this could include other experimental drugs.

Participants began the study with an average baseline viral load of 40,000.

Three quarters had a CD4 count below 200. After one year of treatment, 38 percent of those who had no workable ARVs when entering the trial and 54 percent of those who had one or two workable ARVs had a viral load below 40. A respective 55 percent and 86 percent of each group had a viral load below 400. The average rise in CD4 count was 64 and 139 cells, respectively.

Seeking to shrink the viral reservoir, researchers compared an investigational agent known as ABX464 with a placebo among 30 people who had fully suppressed HIV thanks to antiretroviral (ARV) treatment. ABX464 works by preventing HIV-infected cells from producing viable new copies of virus. Instead, the cells produce small elements called peptides that draw the immune system’s attention to an infected cell, prompting a cell-eliminating response.

After 28 days, participants stopped all treatment, including ARVs. Four weeks later, eight of those who received ABX464 were considered to have responded to the treatment, with the amount of HIV DNA in their bodies—an approximate measurement of the reservoir—dropping by more than 25 percent, for an average drop of 38 percent among them. However, ABX464 was not linked to a reduction in the time to the viral load’s rebound after the ARV treatment interruption.

Sparking widespread condemnation and alarm in the scientific community and a rebuke from the Chinese government, a researcher in China claims to have edited the genes of human embryos to make children naturally resistant to HIV. His research efforts apparently led to the birth of twin girls. Genetic editing of human embryos is illegal in the United States, but rules are more lax in China.

Because the researcher, He Jiankui, of the Southern University of Science and Technology of China in Shenzhen, has not published his research in a peer-reviewed journal, it is not possible to verify his claims at this time. Following animal experiments, He used the CRISPR-Cas9 method to edit a gene called CCR5 in the embryos of consenting potential parents; the couples included HIV-positive men and HIV-negative women.

Normally, this gene gives rise to the CCR5 coreceptor on immune cells onto which most HIV latches in order to begin the infection process.

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

Pushing the Env

Fostemsavir

Reservoir

Edited Embryos

poz.com MARCH 2019 POZ 23

SPOTLIGHT

BY JOE MEJÍA

Women and U=U In January 2008, the Swiss Federal Commission on HIV/AIDS made waves when it issued what came to be known as the “Swiss Statement.” In the paper, some of Switzerland’s foremost HIV experts argued that people living with HIV who maintain an undetectable viral load for at least six months cannot transmit the virus sexually to others. But this information wasn’t broadly shared or accepted until years later.

Galvanized by evidence from larger, more inclusive studies—ones that examined both gay and straight mixed-status couples—Bruce Richman and his U.S.-based Prevention Access Campaign and its allies launched their Undetectable = Untransmittable (U=U) messaging in 2016. Today, U=U is embraced as fact by the HIV community and no less an authority than the Centers for Disease Control and Prevention.

But the good word still needs spreading. A study in 2018 revealed that 40 percent of women living with HIV had not been informed about U=U by their medical providers. The fact that women with the virus— notably women of color and transgender women—are often stigmatized for their sexuality is no doubt partly to blame. It’s no surprise, then, that it’s HIV-positive women who are stepping up to fill this U=U information gap via their participation in and creation of U=U campaigns and their presence at conferences and on social media, where they share their experiences of confronting and overcoming stigma with science.

Posts may be edited for clarity and/or space.

24 POZ MARCH 2019 poz.com

poz.com MARCH 2019 POZ 25

Understanding Undetectable

Equals Untransmittable

A GROWING GLOBAL COMMUNITY BUILDS A MOVEMENT.

BY OLIVIA G. FORD

IN 2018, IN A PACKED HALL AT THE BIENNIAL INTERNATIONAL AIDS Conference, the world’s largest HIV-related meeting, a tall, earnest man asked a question of Alison Rodger, MD, lead investigator of the PARTNER2 study.

The study had delivered yet more unequivocal proof that people living with HIV who are on treatment and maintain an undetectable viral load do not transmit the virus during sex. The monumental discovery is often referred to as Undetectable Equals Untransmittable, or U=U. “Today is marking a revolution in what it means to live with HIV,” the man said, thanking Rodger for her research, before asking how she would respond to HIV information providers who persist in finding excuses to withhold the facts that her study and others prove.

“I think the time for excuses [is] over,” she quickly replied, to loud applause. “It’s very, very clear that the risk is zero. We very much have to promote this: If you’re on suppressive ART [antiretroviral therapy], you’re sexually noninfectious.”

Rodger made sure to acknowledge the global campaign whose mission is to amass support for this message—especially since the man asking was Bruce Richman, a cofounder and key force behind that effort. “I just want to pay tribute to the U=U campaign,” Rodger told Richman. “It’s been astonishing.”

THE CAMPAIGN’S TITLE—AND THE STRONG science now available to back it up—is a resounding yes to a question first posed publicly about 10 years earlier: Does undetectable mean uninfectious? Following extensive discussions and a literature review, a 2008 consensus statement by Swiss HIV experts was the first to assert that it does. The “Swiss Statement” inspired heated discussions, and more than a few objections, in the HIV research and advocacy communities.

The Swiss Federal Commission for HIV/AIDS was called “naughty” for releasing the statement without stronger evidence. The statement’s authors were taken to task for its irrelevance to gay men (all the evidence the writers cited in support of the statement concerned heterosexual transmission) and to those living in areas without access to treatment, viral load testing or screenings for sexually transmitted infections. There were concerns over stopping condom use.

Caution reigned. Aside from coverage in HIV community media, discussion of the statement continued largely apart

from those who stood to benefit from it.

The Swiss Statement was released on January 30, 2008— the day before Venton C. Hill-Jones’s birthday, his first following his HIV-positive diagnosis in 2007. “At that time in my life and career, everything was really new,” says Hill-Jones, now chief executive officer of the Southern Black Policy and Advocacy Network.

Hill-Jones was also in graduate school and relatively new to the HIV field in Texas. The statement’s release did not register with him. “Working in public health, the messages I was seeing coming out of the field were not reaching the people they needed to reach the most—particularly Black communities in the South,” Hill-Jones recalls.

Later that year, at a gay men’s health summit, Hill-Jones heard a speaker living with HIV share the notion that a person with a suppressed viral load was unlikely to sexually transmit HIV, offering as evidence his own experience in a long-term serodifferent relationship—meaning his partner was HIV negative.

As a public health educator, Hill-Jones wanted to spread the good news. However, when he searched the Centers for Disease Control and Prevention (CDC) online and other primary sources to find references to support the claims made by the speaker he had heard, Hill-Jones found precious little information on the topic.

“It was kind of the wives’ tale of HIV,” he remembers.

“You’re not going to pass the virus on, but there’s nothing proving that.”

IN 2011, PROOF BEGAN ROLLING IN, FIRST BY way of a study known as HIV Prevention Trials Network (HPTN) 052. HPTN 052—a randomized trial, the gold standard of clinical studies—found that treatment for the partner

poz.com MARCH 2019 POZ 27

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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COURTESY OF THE NEW YORK STATE DEPARTMENT OF HEALTH

having an undetectable viral load living with HIV reduced HIV transwas a form of prevention. PWNmission in serodifferent couples by at USA revisited the question in a least 96 percent.

2016 community-based participatory At that time, JD Davids, a communiresearch study; close to two in five cations strategist and longtime HIV acof those women had not been made tivist, was serving on a federal working aware of TasP. group that helps guide the U.S. HIV “That discomfort is frequently research agenda. Davids heard the pregrounded in this idea that people liminary results directly from HPTN living with HIV can’t be trusted 052’s principal investigator after the with this information,” commented study was halted years early “because Khanna. “At its core…that narrative it was so overwhelmingly successful is racist, homophobic, patriarchal, that it was unethical to keep doing it,” misogynistic.”

Davids marvels, meaning that the benefits of treatment were so great that IN 2012, RICHMAN, THE COit was unethical to keep participants founder of the U=U campaign, was from taking meds as part of the study. told by his physician that he could Advocates had hoped for, but not not transmit HIV while undetectable. counted on, favorable results; few exRichman had lived with HIV—and pected quite so clear a home run. in fear of transmitting it—since 2003.

The study was heralded by HIV It had been nearly a decade since he media and celebrated at clinical confelt so free. ferences; HIV treatment as prevention “This was incredible,” Richman told (TasP), as it was now more widely fellow U=U activist Davina Conner called, was the 2011 Breakthrough of on her radio program, Pozitively Dee the Year in the journal Science. Yet the Discussions, in early 2017. “I had TasP message was still not breaking always heard and been continuously through to most people living with hearing from social marketing camHIV, especially not via their providers. paigns and clinics and doctors and “You would hear about it in passing,” governments and federal health desays Gina Brown of Southern AIDS partments that I was a risk, that all of Coalition, “but it didn’t really resous were still a risk, even when we nate.” Though her viral load had been were virally suppressed.” undetectable for years, no provider had Richman began collecting research, ever offered Brown information about eventually quitting his previous career her lack of risk of transmitting HIV. to launch the Prevention Access “We continually hear from providers The New York State Department of Health recently launched a new U=U campaign.

Campaign (PAC) in early 2016. [and] public health officials that Go to Untransmittable.org for additional PAC’s signature effort, “Undetectable sometimes they are uncomfortable information, including resources and videos.

Equals Uninfectious,” became “Ungiving [U=U] information,” said Naina detectable Equals Untransmittable” Khanna, executive director of Positive after members of PWN-USA, who had been running camWomen’s Network–USA (PWN-USA), the nation’s largest paigns to change stigmatizing language in HIV communications advocacy network of women living with HIV, during a recent for years, brought to Richman’s attention the fact that a webinar exploring racial and gender justice in the U=U term like “infectious” was problematic in a campaign movement. meant to fight stigma. The PAC founding task force ultiThis is a troubling, persistent trend in medical systems: mately agreed. health professionals acting as gatekeepers, withholding infor“Bruce wanted us in communities of color to have this mation people need in order to make decisions about their lives information that he, as a white man, was freely given,” says and health. Racial and other biases compound these condiBrown, who joined PAC’s steering committee after meeting tions. For example, research shows that Black clients of health Richman at a conference in 2016, researching the facts he systems are less likely to share in decision-making with their shared with her and becoming a key bullhorn for U=U. “He providers than their white counterparts. brought the message to the masses in such a clear and concise In 2013, PWN-USA conducted a sexual and reproductive way that it was easy to buy into.” While numerous leaders health and rights survey of women living with HIV, most of in the U.S. HIV community have traditionally matched whom were on successful treatment and highly engaged in Richman’s own gay white male demographic, Richman care. Less than half of them had been told by a provider that

poz.com MARCH 2019 POZ 31

knew that the U=U message would have true power when U=U advocates more closely mirrored the epidemic.

PAC’s founding task force included advocates like HillJones and Davids as well as the lead authors of HPTN 052, the Swiss Statement and two other trailblazing TasP studies, PARTNER and Opposites Attract. The group drafted a consensus statement to gather endorsements from institutions— including service providers, advocacy organizations, national and international policy bodies, publications, government entities and medical associations. The statement’s message was clear and direct: The risk of sexual HIV transmission from a person who has had a suppressed viral load for at least six months is “negligible to nonexistent.”

Cofounder and director of the African-American Office of Gay Concerns (AAOGC) Gary Paul Wright signed his longtime HIV testing and prevention agency in Newark on to the PAC consensus statement after he encountered Richman shortly after U=U’s launch. “You need to bring this to New Jersey,” he remembers telling Richman. “[Bruce] said, ‘Oh no, they don’t want me, they need you.”

A KEY BATTLEGROUND FOR U=U ADVOCATES is the language used to convey HIV risk. The launch of the consensus statement coincided with the publication of interim PARTNER study results, which famously logged more than 58,000 transmission-free condomless sex acts in serodifferent couples. Richman and other campaign supporters were charged not only with correcting misinformation about the study from community members, providers and media but also with encouraging the reframing of risk messaging—from cautious to celebratory, from vague to direct.

“The message about the transmission risk from someone living with HIV has a profound impact not only on HIV stigma…but also on HIV prevention, testing and treatment,” wrote Richman in his inaugural blog entry on POZ.com when the campaign launched. “It is essential that message about risk be accurate and meaningful.”

“Accurate” meant stating the truth—that in light of increasing evidence, risk of sexual transmission while undetectable was not “extremely low” or “greatly reduced” but rather negligible, as in so small that it is not worth considering. In other words, the risk was zero. Information sources needed to reflect that.

The campaign developed discussion guides and trainings to equip supporters to respond to and resolve incorrect or biased communications whenever they encountered them.

“It’s up to us to change the narrative about us,” read the tagline of one of PAC’s media training programs. The program was successful in correcting language in several national publications that exaggerated transmission risk or otherwise stigmatized people living with HIV. “We are up against more than 35 years of fear of people living with HIV,” says Richman of the challenge of communicating these truths. “I think that people fear change, especially a change that involves people living with HIV not using condoms.”

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JENNIFER VAUGHAN’S STORY OF BECOMING ill, finding out in early 2016 that she had HIV and then returning to health is emblematic of the modern era of HIV treatment and hope. She believed she would be all right. She found an HIV medication regimen that worked, and her virus quickly became undetectable.

Vaughan shared her diagnosis with her children, family, friends and a growing audience of YouTube followers through regular video blogs sharing her journey, and responses were supportive. When someone connected her with Richman, he was the first to tell her that now that her virus was undetectable, she couldn’t transmit it to her boyfriend.

“I remember saying, ‘What?!’” shares Vaughan. “My second reaction was why: Why had I not been informed by my doctor or anyone about this information? Why was I left to feel that I was still a risk to my boyfriend?”

Vaughan’s doctor had encouraged her partner to use condoms and pre-exposure prophylaxis, or PrEP. When Vaughan spoke with this same doctor about U=U, the doctor discouraged her from sharing the campaign’s messages via her growing platform. “[My doctor] agreed with the science but felt people wouldn’t be responsible with it,” Vaughan says. As those who have learned about U=U from Vaughan’s videos know, she could not stay out of the campaign for very long.

“THE SCIENCE WASN’T THE PROBLEM,” says Richman about his efforts to convince prominent HIV leaders to sign on to PAC’s consensus statement.

“They were worried about being the first.” Richman recounted this process to longtime advocate Nelson Vergel in a 2017 interview.

Early adopters amassed: Demetre Daskalakis, MD, a pioneering physician from New York City’s Department of Health and Mental Hygiene, signed on to the campaign the month of its release, making New York the first city public health authority in the United States to do so.

Housing Works was the first U.S. HIV service organization to sign on. Then NASTAD, the coalition of U.S. directors of state HIV programs, came on board as well. But like Hill-Jones, many advocates on the ground were hesitant to take up the message until public health information sources like the CDC stood beside these declarations.

A series of watershed moments came in September 2017 when Anthony Fauci, MD, longtime head of the National Institute of Allergy and Infectious Diseases, said from the stage at that year’s United States Conference on AIDS that “the science really does verify and validate U=U.” Soon after, the CDC made its first statement featuring its updated HIV risk messaging, the result of a months-long process to develop new language incorporating TasP: People who are virally suppressed have “effectively no risk” of transmitting HIV. After the CDC and other federal agencies came around, says Richman: “Then we felt like we could breathe.”

U=U is now a global movement. Organizations and individuals from around the world have developed related U=U materials to raise awareness in their local communities. The Terrence Higgins Trust in the United Kingdom developed a U=U campaign (top) as part of its “It Starts With Me” series. Go to StartsWithMe.org.uk for more. The U.S.–based Pride for Youth, a division of the Long Island Crisis Center, developed a U=U campaign in both English and Spanish. Go to LongIslandCrisisCenter.org/PrideForYouth for more.

poz.com MARCH 2019 POZ 33

omen’s History Month The Black AIDS Institute Celebrates Women’s History Month through the Power of Black Female Leadership. “The legacy we stand on is one of resistance, resiliency, love, and power building. HIV activism has changed our world for the better. It is because of the activism of those who stand with us today, and those As we whose spirits and efforts remain ever-present, lead national we can say we have the tools and ability to efforts to end the end the HIV and AIDS epidemic in the epidemic among Black U.S.” (Raniyah Copeland, President trans and cis women we and CEO, Black AIDS acknowledge we can't do it Institute) without our partners at every level of the movement.

When Thank you for standing Black women with Black lead, we create change women. for all people. We are excited to build the leadership of Black women across the country with our new ambassador program, which is dedicated to amplifying the voices of Black women as they change conversations about sexual health and HIV.

blackaids.org #blackaids

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PREVIOUS PAGES: (“STARTS WITH ME”) COURTESY OF TERRENCE HIGGINS TRUST; (U=U) COURTESY OF LONG ISLAND CRISIS CENTER/PRIDE FOR YOUTH

“THE TIME FOR EXCUSES IS OVER. IT’S VERY CLEAR THAT THE RISK IS ZERO.”

MORE THAN 800 organizations, from nearly 100 countries have signed on to PAC’s consensus statement and agreed to spread the campaign’s message and values.

The simplicity of the U=U message is among its greatest assets—and most vexing challenges.

“The message was primed for this upcoming generation,” AAOGC’s Wright points out—a cohort accustomed to receiving information in quick bites via apps and social media. The pithy phrase could also be a jumping-off point for community members to further investigate the matter, he adds. However, what a hashtag-based message reaps in shareability, it may lose in complexity and nuance.

“How this message gets translated to the wider world can be problematic,” says Andrew Spieldenner, PhD, chair of the United States People Living with HIV Caucus. The caucus brings together networks and other groups of people living with HIV to speak in a collective voice for the U.S. HIV community. While many of its member organizations have signed on to the U=U consensus statement, the caucus itself has not.

Both Spieldenner and vice chair Barb Cardell, as individuals and on behalf of the caucus, praise the groundswell of strength, self-empowerment and sex-positivity U=U has inspired among people living with HIV. “We know that it is not the intention of the campaign” to relegate those with a detectable viral load to lesser status, says Cardell. However, U=U supporters cannot control all the message’s uses, including as a potential tool to punish people living with HIV through criminalization.

Spieldenner cites a recent revision to North Carolina’s HIV-specific law that lists a suppressed viral load as a reason not to criminalize HIV nondisclosure, leaving people with a detectable viral load vulnerable to prosecution. To address concerns such as lack of access to treatment and overpolicing, PAC developed the “third U”: “Unequal.”

“Our collective celebration of U=U is undermined if our access to HIV diagnostics, treatment and care is unequal,” states the page on PAC’s website devoted to the third U. Richman sees the third U not only as a reminder to be conscious in communications and not shame detectability but also as a tool to advocate for treatment access for all.

The caucus, according to Cardell and Spieldenner, continues to wrestle with questions of how the campaign can satisfy its own best intentions.

“How do we make our public health partners accountable to that message?” asks Spieldenner. “How many organizations [that have signed on to U=U] have done in-service trainings with their staff to change the way they talk about HIV?”

WITH OR WITHOUT THE #UEQUALSU HASHTAG, the facts behind U=U are reaching an ever-wider audience.

Hill-Jones expressed excitement at the potential for the U=U message to spread more widely into communities of color across the country, citing the most recent season of the Fox series Empire as an example of an innovative, accessible approach.

In a tender, informative and markedly undramatic turn for the often over-the-top family/music-industry drama, a main character on the show and his boyfriend, two Black gay men in a serodifferent relationship, engage with disclosure, undetectability and efforts to assuage the fears of a mother who witnessed the worst of the epidemic’s early years.

“Those are the messages that reach people in their living rooms,” says Hill-Jones.

Wright hopes that U=U will influence the basic messages young people today receive about HIV and that the focus on biomedical prevention approaches will not eclipse the need for behavioral interventions that can help people connect with care and treatment. Wright has seen funding for behavioral approaches flag in recent years, as PrEP and TasP have taken the stage.

Vaughan, who is contacted by many newly diagnosed people as a result of her YouTube videos, has noticed that more and more of them, in many countries, are already aware of U=U. “That means our message is getting out there,” says Vaughan, “it’s working!” Like many involved in the campaign, she hopes the facts of U=U can be leveraged to improve treatment access for all.

Cardell’s suggestion to that end? Talk about systemic inequities first. “What if there were a T-shirt that had just one U on it?” she muses. “And the conversations started off with: ‘We acknowledge that there is unequal access in the United States and globally to these medications, to [viral load and STI] tests.

We need to always be working around that unequal access— and we want to do that so we can reach this vision of people being undetectable if they choose to go on medications.’”

Longtime HIV activist JD Davids has also thought a lot about where the U=U movement might go from here.

“Amazing, brilliant people have come together to call for this,” he says. How might those people work together to become an even stronger base of power in the HIV community, pushing for deeper systemic change?

He recalls and quotes from ACT UP icon Vito Russo’s classic speech “Why We Fight”: “After we kick the shit out of this disease, we’re all going to be alive to kick the shit out of this system, so that this never happens again.”

Then, Davids asks, “If we have ‘kicked the shit’ out of [the myth that] people living with HIV are dangerous to others, what shit are we kicking out of the system so that the stigma, the misinformation, the intentional underinforming of people—all of it—never happens again?” ■

poz.com MARCH 2019 POZ 35

VIRAL LOAD DOES NOT EQUAL VALUE ENSURING HEALTH EQUITY FOR ALL PEOPLE LIVING WITH HIV

BY CHARLES STEPHENS

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IN 2018,,, I WAS INVITED BY WRITER,,, BLOGGER AND HIV advocate Mark S. King to co-facilitate a discussion at the United States Conference on AIDS related to Undetectable Equals Untransmittable (U=U). Titled “Are We Shaming Those Who Are Detectable?” the workshop examined the struggles and barriers around treatment and care for people living with HIV. The session was an extraordinary learning experience. Questions raised during the session, and the ideas that we discussed, have inspired me to think through the current challenges and opportunities for ensuring health equity in our communities.

How to support and affi rm people living with HIV who are not virally suppressed was one of the key issues that emerged. Viral suppression, or being undetectable, not only

keeps people who are living with HIV healthy, but it also means they cannot transmit the virus sexually.

However, according to the Centers for Disease Control and Prevention (CDC), in 2015, an estimated 1.1 million U.S. adults and adolescents were living with HIV but only 51 percent of them had achieved viral suppression. Further CDC data showed that in 2014, about 471,500 African Americans were living with HIV but only 43 percent of them had a suppressed viral load.

Considering the profound advances in HIV treatment and medicine, many of us are left wondering why so many members of our community struggle with viral suppression.

To contend with this issue and fight the epidemic, we must confront structural barriers and address stigma. What’s more, we must imagine new ways to provide community support beyond offering only clinical solutions.

poz.com MARCH 2019 POZ 37

Public narratives—stories told and spread throughout a culture to describe, explain and provide meaning to experiences— are often rooted in myths and fictions perpetuated by the dominant culture to maintain social order.

No matter how many times, for example, the racist and sexist caricature of the “welfare queen” is refuted, the notion that Black people take advantage of the “system” for personal gain persists.

These narratives rob low-income Black people of public empathy, absolve American institutions that sustain Black poverty of any responsibility and justify efforts and actions to reduce the social safety net that protects vulnerable Americans.

A pervasive myth concerning the HIV epidemic is that individual behavior rather than structural inequality is the root cause of the disproportionate impact of HIV on the lives of members of vulnerable communities.

Leisha McKinley-Beach, founder of Leisha.org and a national HIV prevention consultant, echoes this point: “We tend to blame the person instead of looking at our infrastructure or systems that support these negative outcomes. If we continue to focus on HIV, we [won’t] end the epidemic. HIV is the outcome of cultural and social issues that affect the entire person.”

Institutions must also have the capacity and resources to serve and connect to communities in need, particularly communities already affected by structural violence, such as people of color, cisgender and transgender women, undocumented folks, the queer community and people experiencing economic distress. If HIV organizations are unable to provide quality services, then how can people living with HIV be expected to access health care? More specifically, how can individuals become undetectable if their AIDS service organization can’t help them get meds?

In an interview with TheBody.com, Martin Walker, director of HIV programs at Planned Parenthood of the Rocky Mountains, shares his journey: “I think it’s a bigger systematic problem, right? We’ve got all these grassroots organizations trying to do a lot of things, and they’re getting overrun by the number of people that they are trying to serve. And so things like making phone calls back from the voicemail, or checking the voicemail, or cleaning the voicemail out, that sort of gets lost in the shuffle when you are a small grassroots organization.”

Recognizing institutional and structural barriers does not mean completely ignoring the role of individual actions or personal agency. Walker acknowledges: “I want people to know that my being detectable is not just the system—it’s also me.” He knows that sometimes you have to be your own advocate. “Folks need to just keep calling, keep trying to access the system, be the squeaky wheel. Get back to that old ’80s-style advocacy that we used to do.”

McKinley-Beach concurs: “Although I am not downplaying the accountability and responsibility of each individual,

38 POZ MARCH 2019 poz.com

even in the midst of making decisions that could yield positive outcomes, people are still faced with these other barriers that exist and prevent such an event from occurring.”

The late poet and essayist Essex Hemphill sums it up best in his epic poem “Vital Signs”: “Some of the T cells I am without are not here through my own fault. I didn’t lose all of them foolishly, and I didn’t lose all of them erotically.

Some of the missing T cells were lost to racism, a wellknown transmittable disease.”

Hemphill continues: “Some were lost to poverty because there was no money to do something about the plumbing before the pipes burst and the room flooded. Homophobia killed quite a few, but so did my rage and my pointed furies, so did the wars at home and the wars within, so did the drugs I took to remain calm, cool, collected.”

To address the structural barriers that impede treatment access, the HIV movement must employ an anti-oppression/ racial justice lens. To this end, it is particularly critical to recognize how HIV affects Black communities.

McKinley-Beach suggests, “We don’t end HIV in America without ending it in Black America, and we don’t end it in Black America under the current trajectory.”

The late HIV advocate Mario Cooper, in his prophetic essay “Get Your Black Up!,” calls on the Black community to engage in direct-action organizing. Visionary movement leadership, rooted in an intersectional analysis, is the ground upon which our politics and policies must be built.

To comprehend why people struggle to become virally suppressed, we must confront health care, but we must also confront race.

WEAPONIZING CULTURE Though it may be tempting to reduce stigma to interpersonal interactions, doing so ignores the truth that stigma is as much systemic as it is singular. Stigma is a kind of psychological warfare that robs oppressed people of their human dignity; it also constitutes a stealth effort to control them. This is, in part, how stigma makes its way into laws. HIV criminalization is a stunning example of this process, and it illustrates how people with a detectable viral load are set up to be further stigmatized and shamed.

In a POZ blog post titled “Prevention vs. Prosecution: Creating a Viral Underclass,” Sero Project executive director and POZ founder Sean Strub illustrates how HIV stigma, reinforced by the power of the law, creates a viral underclass: “This viral underclass is a result of HIV criminalization, when people who have tested positive for HIV experience punishment, or a more extreme punishment, as well as a presumption of guilt or wrongdoing in a host of settings and for a host of practices that are, for those who have not tested positive for HIV, unremarkable.”

Strub continues: “When the government statutorily stigmatizes, it is a collective statement of the society. It says

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

NOT JUST PILLS, BUT POWER

“WE NEED A MOVEMENT THAT LEAVES NO ONE BEHIND, REGARDLESS OF VIRAL LOAD.”

this group is ‘less than.’ It sets an example for communities, encouraging stigmatization and discrimination.

And it is wrong.”

In the health care narrative writ large—played out in service delivery, blogs, forums, workshops, research and social media—being detectable can make folks the object of blame.

In other words, as Venita Ray, deputy director of Positive Women’s Network–USA, puts it: “Because HIV is a racial justice issue, we must not deny that inequities exist that increase the vulnerability of Black folks to acquiring HIV and prevents us from accessing culturally appropriate care.

That means we have folks who are not able to achieve undetectability for a number of reasons. It is not their fault.

We must not blame or shame folks for acquiring HIV or having a detectable viral load. We cannot and must not leave anybody behind.”

FROM CONTINUUM OF CARE TO CONTINUUM OF JUSTICE The dominant framework for how we care for people living with HIV must be examined not only through a continuum of clinical care but also through a continuum of community care and justice. Who are we leaving out and how do we bring them in?

How are we supporting our community members?

Do we not have any obligation to ensure that our friends and loved ones are engaged in health and wellness in a way that’s comfortable for them?

Too often, we fail to show empathy and compassion for the marginalized among us. Rather than see the system and its institutions for what they are—the sources of our challenges—we view the marginalized as accountable for their own oppression. This lets institutions off the hook. Worse, it paints marginalized people as being responsible for the conditions forced on them by the dominant culture.

Monte J. Wolfe, artistic director of arts, education and outreach organization Brave Soul Collective, says: “I think one of the most important things to consider when talking about those of us living with HIV, particularly people of color, is for us to be as compassionate as humanly possible, taking into consideration that none of us really truly knows what it’s like ‘on the other side of HIV’ until we’re faced with having to deal with the very intricate parts of such a complicated issue.”

FIGHTING BACK We must fight back with messaging. One of the most effective and historic counter-narratives to HIV stigma has been the U=U movement. U=U advances a message that successfully battles stigma and transforms the lives and experiences of people living with HIV.

Perhaps U=U could be a model for how we as a community can better support people living with HIV who have a detectable viral load. The proper messaging would let them know they, too, are worthy of celebration; they, too, are worthy of affi rmation and should absolutely be loved, supported and valued.

We must also fight back with organizing and activism.

Much of HIV movement history is rooted in confrontation— with government, health care institutions, pharmaceutical companies and more. So if health care departments and AIDS service organizations continue to be hostile to vulnerable communities or put up barriers to care, then we must consider direct actions targeting them.

We need to make more funding available for community organization and political education in the HIV movement. Such investment by the philanthropic community must actively engage and partner with networks of people living with HIV, particularly those led by people of color, in order to guide programmatic approaches.

As a movement, we must continue to advance an analysis that centers racial justice in our policy prioritization.

A discussion about the clinical experiences of marginalized communities—notably those whose HIV remains detectable—necessitates addressing trauma. Trauma-informed care practices could go a long way in making health care delivery more responsive to the various experiences and needs of people living with HIV and supporting them in remaining connected to care. We must demand that HIV clinicians be trained in trauma-informed care.

We, as individuals, must also not forget the collective trauma endured by the survivors of our movement. We must remember those who came before us, know their stories and honor their memories with our efforts. Our movement’s history offers lessons we can integrate into our current efforts.

The immense challenges we confront cannot be overstated. Years and years of hard-won battles for rights and resources, which, even with our best efforts, never completely addressed all our needs, are being plundered by a conservative regime that has expressed a deep hostility toward those of us in the margins. The health of our communities is at stake.

Never have we—LGBTQ folks, people of color, poor and working-class people, all communities most affected by HIV—enjoyed the luxury of passive despair; we have always had to fight for everything. Now is not different. We need a movement that leaves no one behind, regardless of viral load. We must protect all our community members. ■

poz.com MARCH 2019 POZ 39

HEROES

BY ALICIA GREEN

In 2016, when Mariah Wilberg started working as a communications specialist at the Minnesota Department of Health, she was determined to incorporate the concept of Undetectable = Untransmittable (U=U) into the state health agency’s messaging.

“I embarked on a process of figuring out where we were heading in regard to U=U and whether people were receptive to us officially endorsing the campaign and starting to do public education,” says Wilberg, an advocate living with HIV. “After about 10 months of internal discussions, I got the green light for us to become the third state to sign on.”

Wilberg was immediately given a budget to launch a U=U campaign for the Minneapolis– St. Paul metropolitan area. In addition, she was tasked with training colleagues on the science backing up U=U and finding an overall consistent language to describe it.

“Not only is there the public health benefit of preventing new transmissions,” she says, “but also U=U is the single most important thing that changes how people living with HIV feel about and view themselves.”

Wilberg was 19 years old and pregnant when she was diagnosed HIV positive.

“I handled it very well during the pregnancy from a medical standpoint, but after that, I really struggled,” she recalls.

At age 25, Wilberg received an AIDS diagnosis while incarcerated.

After her release from prison in 2013, she became involved with the Minnesota AIDS Project (now part of JustUs Health), first as a volunteer and then as a community education and risk-reduction assistant.

The subsequent years included stints as an HIV prevention specialist at the youth-focused organization Face to Face and as a health educator and social media coordinator for the Rural AIDS Action Network.

Being incarcerated under Minnesota’s severe drug laws also inspired Wilberg to become involved in criminal justice reform. In 2016, she appeared before the Minnesota Legislature to advocate for reduced prison sentences for low-level drug offenders.

That same year, the legislature significantly reformed its criminal drug laws.

“I like to think of all the people who are now receiving help in their community instead of going to prison as a result of these changes,” she says.

Wilberg currently does communications work specifically for the STD, HIV and Tuberculosis Section of the Minnesota Department of Health.

She was recently given a budget for a new 2019 U=U campaign, which she hopes will be a collaborative effort between the health department and its partner organizations.

“This is a call to action to other state health departments,” Wilberg says. “Please sign on to the U=U message. It’s changing lives.”

40 POZ MARCH 2019 poz.com

Mariah Wilberg promotes U=U via her state’s health agency.

DAVID BOWMAN

Call to Action

STOPPING THE VIRUS CAN START WITH YOU. Here are two resources that can help.

Watch videos, share information, and see how we can all help stop the virus.

HelpStopTheVirus.com YouTube.com/HelpStopTheVirus HelpStopTheVirus.Tumblr.com

Get the answers you need, privately, on your phone.

HIVanswers.com/app

HIV ANSWERS, the HIV ANSWERS Logo, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc. All other marks are the property of their respective owners. © 2018 Gilead Sciences, Inc. All rights reserved. UNBC5702 06/18

Undetectable Equals Untransmittable TIPS ON HOW TO COMMUNICATE U=U

The fact that people living with HIV on effective treatment do not sexually transmit the virus is known as U=U. This information can transform lives when communicated properly. It’s important to be precise and empowering.

U=U BELONGS TO EVERYONE

U=U is based on the science of treatment as prevention (TasP). In 2016, Julio Montaner, MD, the pioneer of TasP, was one of the first endorsers of U=U. More than 800 organizations from nearly 100 countries, including dozens of U.S. public health departments, now use the phrase.

MAKE IT A PRIORITY

As you create statements, videos, speeches and newsletters, put U=U up front so it has the best chance of being heard. U=U applies to many areas, including HIV stigma, sexual and reproductive health, HIV prevention, HIV criminalization and access to treatment and services.

THE BASICS ARE EASY

Focus on adherence, regular viral load testing and engagement in care. The basic rules are not complex. It’s about TLC. Treatment: stay on treatment as prescribed. Labs: get labs done regularly.

Connection: stay connected to care.

Other items to keep in mind: The viral threshold for U=U is under 200 copies per milliliter, synonymous with viral suppression. U=U only prevents HIV. Condoms help prevent other sexually transmitted infections and pregnancy. U=U applies only to sexual transmission, not to breast feeding or needle sharing. U=U may not exempt people from HIV disclosure laws.

BE CLEAR AND CONSISTENT

Use strong phrases such as “can’t pass it on,” “cannot transmit,” “no risk” and “effectively no risk.”

These are in effect the same risk assessment.

You can also say “zero risk.” Avoid phrases that convey even slight risk, like “nearly impossible,” “extremely low” or “makes it hard to transmit.”

Any perceived window, no matter how slight, may still be considered a risk.

Go to PreventionAccess.org

and

POZ.com/Undetectable

for more information.

Source: Adapted from “Communication Tips: A Dear Colleague Letter from the Executive Director” by Bruce Richman of Prevention Access Campaign

A HEALTHIER LIFE CAN START WITH HIV TREATMENT. Starting HIV treatment as soon as possible helps stop the damage HIV causes to your body. Plus, doctors and scientists have found that it can help reduce the risk of some infections, certain cancers, and even AIDS.

TREATMENT HELPS PREVENT THE SPREAD OF HIV. Starting and sticking to HIV treatment can lower the amount of virus in the body so much, it can’t be measured by a test. It’s called being undetectable.

According to current research, sticking to daily treatment and staying undetectable means there’s basically no risk of spreading HIV through sex.

HIV is still in the body, and being undetectable doesn’t prevent other STIs. So use condoms and practice safer sex.

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Watch HIV: “Treat 2 Prevent” See how staying on treatment can help protect you and the people you care about.

YouTube.com/HelpStopTheVirus

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