POZ March 2022

A SMART+STRONG PUBLICATION MARCH 2022 POZ.COM $3.99

H E A L T H ,

Never Silent

L I F E

Long-term survivor and activist Peter Staley tells all

&

H I V

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 that may have been hidden in your body. 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. Your

healthcare provider will test you for HBV. 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, and may give you HBV medicine.

ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults and children who weigh at least 55 pounds. 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,

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.

Tell your healthcare provider about all the medicines you take:  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.

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. 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 Take BIKTARVY 1 time each day with or without food.

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

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

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

visit BIKTARVY.com for program information.

BIKTARVY, the BIKTARVY Logo, GILEAD, the GILEAD Logo, KEEP BEING YOU, and LOVE WHAT’S INSIDE are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2021 © 2021 Gilead Sciences, Inc. All rights reserved. BVYC0467 06/21

PZA532322.pdf 07.23.2021 13:24

ESA

REAL

BIKTARVY

PAT I E N T S

KEEP BEING YOU. 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.

Watch their stories at BIKTARVY.com Featured patients compensated by Gilead.

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

PZA532323.pdf 07.23.2021 13:26

ESA

CONTENTS

EXCLUSIVELY ON

POZ.COM

Kalee Garland speaks out for people living with HIV.

POZ BLOGS Our roster of bloggers spans the diversity of the HIV 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. Visit the blogs to find hope and inspiration from others.

D

POZ OPINIONS 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.

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

Go to poz.com/undetectable for more.

POZ DIGITAL Scan the QR code (left) with your smartphone camera or go to poz.com/digital to view the current issue and read past issues online.

22 SEARCHING FOR ACT UP This excerpt from Peter Staley’s memoir, Never Silent: ACT UP and My Life in Activism, takes place as AIDS activism blossoms.

28 WHAT MAKES AN ACTIVIST? Claim your place at our community table. BY MARK S. KING 3 FROM THE EDITOR

14 BASICS

Carry On

Treatment adherence

4 POZ Q+A

16 CARE AND TREATMENT

In this discussion hosted by AVAC, health advocates and researchers explain the importance of endpoints in clinical trials.

Stigma and missed HIV meds go hand in hand • most adults worldwide achieve viral suppression • aging with HIV and other chronic illnesses • people who have HIV are at risk for heart disease

6 POZ PLANET ACT UP Los Angeles launches a history project • Venton Jones runs for Congress in Texas • the Southern Black Policy and Advocacy Network • what’s new in the National HIV/AIDS Strategy • Everyday

10 VOICES Winners of POZ Awards 2021. Plus, an excerpt from a speech by Tom Kirdahy in honor of his spouse, the late playwright Terrence McNally, who wrote about AIDS.

12 SPOTLIGHT A roundup of recent community events

18 RESEARCH NOTES FDA OKs Apretude, the first long-acting injectable PrEP • trials for Islatravir, a long-acting med, are put on hold • IAS launches a global cure strategy • challenges of being HIV positive and deaf

20 ASK POZ How much alcohol can I safely drink?

32 HEROES Born with HIV, Kalee Garland fights stigma, often via her Instagram posts.

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, 157 Columbus Avenue, Suite 525, New York, NY 10023. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 258 POSTMASTER: Send address changes to POZ/Smart + Strong, 157 Columbus Avenue, Suite 525, New York, NY 10023. Copyright © 2022 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® and POZ® are registered trademarks of CDM Publishing, LLC.

COVER: BILL WADMAN: (GARLAND) JIMMY GALT; (MEGAPHONE AND SPEECH BUBBLES) THINKSTOCK; (MAGNIFIER) ISTOCK

#UNDETECTABLE

FROM THE EDITOR

Carry On

I

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TESTED HIV POSITIVE in 1992, the day after my 22nd birthday. However you slice it, I’ve been living with the virus for three decades. I’m grateful to still be here and of service.

As a journalist living with HIV, I’ve been lucky to be of service simply by doing my job here at POZ. I believe in advocacy journalism. To me, there is no conflict in presenting facts while having a point of view. We strive to do that every day. By doing so, we aim to serve our readers.

I hope you noticed my use of “advocacy” instead of “activist” to describe our journalism. The distinction is subtle but not insignificant. In this special issue of POZ, we’ll be focusing on activism and activists.

In my mind, advocacy is an umbrella term that includes activism. Advocates have a point of view, but activists are like partisans. Not that there’s anything wrong with that, of course. Our cover subject, Peter Staley, certainly fits that description.

As a long-term survivor and a member of ACT UP, Peter is arguably a textbook example of an activist. The actions that he’s participated in are legendary. Remember the one where an activist unfurled a 20-foot “Silence=Death” banner on the awning of the Food and Drug Administration building?

That activist was Peter.

He recounts that moment and countless more in his memoir, Never Silent: ACT UP and My Life in Activism. From childhood to the present day, the book details his life as an activist. The excerpt in this issue is from the chapter titled “Searching for ACT UP.” Just as AIDS activism itself is blossoming, Peter begins to feel ill and somehow finds his way to ACT UP. Go to page 22 to read more.

As his memoir makes clear, Peter has been consistently engaged in activism ever since those early days with ACT UP. From his creation of a meth awareness campaign to behind-the-scenes engagement with the director of Dallas Buyers Club to his current support of pre-exposure prophylaxis (PrEP), he continues to fight the good fight.

In uplifting Peter’s efforts and the work of so many others like him, a question does come to mind: What makes an activist?

Plenty of people living with HIV as well as our HIV-negative allies are engaged in activism but struggle to consider themselves activists. What gives? Go to page 28 for an essay by Mark S. King that tries to answer that very question.

In his essay, not only does Mark share his own journey to identifying as an activist, but he also tells the advocacy stories of Queen Hatcher-Johnson and Matthew Rose. Spoiler alert: It turns out they’re activists too. As Queen and Matthew demonstrate, the HIV epidemic has changed and so has the activism.

Case in point: Kalee Garland. Born with HIV in 1986, she struggled as a child living with the virus. As a youth, only her family and close friends knew she had HIV. In 2020, Kalee took a leap of faith and created the Instagram account @aidsbaby86. She was surprised by all the support. She now uses Instagram to fight HIV-related stigma.

Go to page 32 to read about her activism.

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

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

poz.com MARCH 2022 POZ 3

POZ Q+A

BY AVAC

WHAT’S AN ENDPOINT?

T

HE FOLLOWING IS AN EDITED TRANSCRIPT FROM AN EPISODE of Px Pulse, a podcast from AVAC: Global Advocacy for HIV Prevention.

The conversation includes Jeanne Baron, the host of Px Pulse; Matthew Rose, a director at Global Health Strategies; Dave Glidden, a professor of biostatistics at the University of California at San Francisco; Erica Lessem, a senior strategist for the New York City Department of Health and Mental Hygiene; and Meagan O’Brien, the senior medical director of early clinical development and clinical experimental sciences at Regeneron.

— Oriol R. Gutierrez Jr.

Baron: Designing a clinical trial is serious business. If it’s done correctly, researchers are going to be able to answer the central question: Are we studying something that makes a difference? Does this drug or this vaccine—is it helpful?

Rose: But designing a trial can go wrong. The trial can fail to deliver an answer. One key to an answer is by defining the endpoints, the outcomes the trial will compare.

Baron: So what’s an endpoint?

O’Brien: The endpoint is an objective measure, a validated measure, an accepted measure that shows whether or not something works.

Lessem: What research is really trying to do is ask a question and get that answered.

And so I think of the endpoint as the measure of that answer.

Glidden: When we’re comparing across different kinds of drugs or regimens in a study, they’re a way of scoring who the winner is.

Lessem: There can be a lot of different endpoints for how we might try to measure the answer.

4 POZ MARCH 2022 poz.com

So mortality would be the hardest endpoint—or survival, said another way.

Rose: For example, for the first decade of AIDS pandemic trials, we were focused on finding treatment that could keep people alive. So researchers were looking at the number of deaths as an endpoint. For prevention, up until now, the endpoint has been the number of infections. As researchers learn more about a disease, the endpoints change.

Take the tale of HIV treatment.

Lessem: When we didn’t have a good way to measure the HIV virus itself or even the immune response to the virus, one of the only ways that we had to measure whether drugs were doing something was to look at how sick someone is getting or whether they die.

Baron: It’s not like that anymore. Scientists now know how to measure HIV in the body and suppress it. A trial can test new treatments and use a person’s viral load as the endpoint. That means nowadays, trials are not tracking if O’Brien:

ISTOCK

Understand what matters most about clinical trial endpoints for both advocates and researchers.

they’re keeping people alive with a new treatment. They track the viral load long before anyone is even sick. But when it comes to prevention, researchers have yet to find something to look for in the body as a sign that a prevention drug is working.

Rose: Because when it comes to prevention, we’re not entirely sure what the body needs to do to protect itself. That holy grail of HIV prevention research is called the correlate of protection.

Baron: Once found, prevention studies will track that correlate of protection.

That will be the new endpoint, enabling researchers to know something works before anyone’s even exposed to HIV. Baron: But the thing to remember is, the endpoint should tell you what the intervention is good for—cure, prevention, milder symptoms, a quicker recovery?

And that endpoint better make sense.

Lessem: The most unworkable endpoint is one that doesn’t reliably correlate with an outcome that we care about.

Glidden: I want to stress that endpoints should be something that are highly relevant to a particular population.

Baron: So endpoints need to be relevant, explainable and achievable. One great example are the studies that tested oral PrEP [pre-exposure prophylaxis]. They used new infections as an endpoint and ultimately showed that oral PrEP did in fact protect against HIV. Rose: I love a good nerd moment, but why is it so important to know about this stuff right now? Why do we care about endpoints so much right now? So in HIV prevention, the field is really sweating over endpoints. Two big facts bedevil trial design today. The number of new HIV cases has been really high for decades.

Baron: Up to now, new infections have been the endpoints for clinical trials.

Rose: But oral PrEP works really well if you take it. And trials provide PrEP to their participants to stay negative.

Together, this all means that the world needs more trials to test new options.

But reaching the endpoints will be a challenge.

Baron: So just to reiterate, in the real world, something like 1.5 million people are getting HIV every year, which means today’s HIV prevention tools

are not reaching them or fitting into their lives. But in trials, the number of people who will get HIV might be very tiny because the trials do a good job of supporting people to use existing prevention tools.

Glidden: We’ve seen this in the last couple of HIV prevention trials that have read out incredibly, strikingly low levels of HIV. Lessem: It makes the trial a lot harder to conduct because you have to enroll a lot more people to get the potential number of endpoints to be able to see a difference in the arms of the study.

Baron: To solve this, brand-new trial designs are already under consideration, and they’re going to be complicated.

Glidden: A big part of my life these days is assessing ways that we might credibly

tions. They do protect people from dying, and they lower the risk of severe disease.

Those are the endpoints the trials were tracking all along. In other words, COVID vaccines are fulfilling the promise seen from the trials. But you have to understand the endpoints to see that.

Rose: Which is why it’s so important that these endpoints make sense. And to take a broader view, think about the research to come in COVID-19, TB [tuberculosis], cancer, malaria and HIV. Scientists, advocates and community members—all stakeholders—need to be looking at trials and checking the endpoints. It’s like kicking the tires on a car, you know. Make sure that these things are relevant, are achievable and matter to your community.

Glidden: Yes, advocates represent an

“We should be involving advocates and patients.” estimate how many people in a study might have become HIV positive had they not received a PrEP agent.

Baron: So endpoints are a big deal in HIV prevention right now because the field is struggling to find an endpoint other than new infections. COVID-19 research also shows why understanding endpoints is so important. When trials for a COVID vaccine began, the endpoints were tracking if the vaccine candidate prevented severe disease or death, but the endpoints did not track if the candidates prevented infection.

Rose: The [trials] were actually designed to test if the vaccines reduced severe disease and reduced death. Those were the endpoints the trials were looking at.

Baron: But not everyone understood that. There’s been a lot of confusion about breakthrough infections. But with millions now vaccinated, the results are in. COVID vaccines do not stop all infec-

opportunity for partnership that’s critical for the success of research.

O’Brien: It’s highly recommended that even in the design of studies, we should be involving advocates and patients that suffer from the disease. Even in the very first stages of the idea.

Glidden: Researchers need engaged advocacy. It is incredibly important for good science. I believe that advocacy and researchers make better science together.

Baron: In HIV prevention research, better science may involve endpoints based on estimating how many people in a trial might have become infected if they hadn’t received PrEP. And those endpoints will continue to evolve. Taking all these next steps must include a partnership between researchers and advocates because if the endpoints don’t reflect a research question that’s relevant to people, you’ll end up with a product nobody uses. ■

poz.com MARCH 2022 POZ 5

POZ PLANET

BY TRENT STRAUBE

Memory = History = Knowledge = Power ACT UP Los Angeles members launch an oral history project.

6 POZ MARCH 2022 poz.com

1

2

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(1) COURTESY OF ACT UP LOS ANGELES; (2-6) COURTESY OF ACT UP LOS ANGELES/CHUCK STALLARD

AIDS activists in Los Angeles made history; now, they’re working to preserve it. Five former members of the city’s AIDS Coalition to Unleash Power (ACT UP), which was active from 1987 to 1997, recently launched the ACT UP Los Angeles Oral History Project. Ideally, their goal is to assemble digital interviews with fellow ex-members and offer them to a publicly accessible professional archive.

The project is expected to take a few years and will require more fundraising (you can make a donation on ACTUPLA.org). In the meantime, the project’s founders are amassing photos and ephemera—buttons, flyers and T-shirts, for example—and posting images of them, along with interview extracts and videos, on their website, which you can peruse now.

Announced on World AIDS Day, December 1, the history project was motivated by the deaths of former ACT UP members whose histories hadn’t been preserved. The project is organized

by Mary Lucey, Nancy MacNeil, Jordan Peimer, Helene Schpak and Judy Ornelas Sisneros.

The response to the launch, Peimer says, “has been resoundingly positive. Former members have enjoyed viewing clips and sharing stories, and younger people seem genuinely interested in and appreciative of the work that the group had done.”

Peimer points out that many of the ACT UP chapter’s accomplishments—creating a hospital ward dedicated to HIV/AIDS, challenging Hollywood to include HIV and queer stories, addressing the health care needs of prisoners living with HIV and launching a needle exchange—came about after lengthy battles but are now considered part of everyday life in Los Angeles.

Inspired by a speech given by Larry Kramer, ACT UP was born in New York City in 1987. Chapters soon formed in numerous cities and across the globe; each one operated independently, and many remain active today.

ACT UP Los Angeles differed from other chapters, according to the history project’s website, notably in its focus on women’s and prisoner’s rights and on provisions for the county’s AIDS ward. “While no organization is perfect,” Peimer adds, “ACT UP Los Angeles helped bridge the division in the LGBTQ community between men and women, and ACT UP Los Angeles is notable for the commitment of its female leadership.”

Also unique to the Los Angeles chapter was its slogan: “Action=Life.” It complements the 1. Action banner outside the Oscars “Silence=Death” ceremony, 1991 2. AIDS ward vigil symbol, which at LAC+USC Medical Center, 1989 3. Les Johnson getting arrested at was created in an LA County Board of Supervisors 1987 by an art meeting, circa 1989 4. Die-in collective in New outside a Century Plaza Hotel GOP York City and meeting, 1990 5. Action=Life group became synonygathering on the steps of LAC+USC mous with AIDS Medical Center, circa 1988 6. David activism across Lacaillade protesting Amgen’s the globe. pricing of Neupogen, 1993

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ACT UP 101 Want to learn more about this historic AIDS activist group? You’re in luck.

This primer will educate, inspire and even entertain!

ACTUPOralHistory.org This archive includes 187 interviews with members of ACT UP New York.

AIDS Diva: The Legend of Connie Norman Now playing film festivals, Dante Alencastre’s documentary spotlights this transgender activist and spokesperson for ACT UP Los Angeles.

5

the AIDS activist project Bill Bytsura’s stunning collection of 60 black-andwhite portraits of activists from various cities includes statements from each.

BPM (Beats Per Minute) This 2017 French film by Robin Campillo offers a based-on-real-life tale of AIDS activism in 1992 Paris.

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(NORMAN) AIDSDIVACONNIE.COM; (BPM) COURTESY OF CELINE NIESZAWER

How to Survive a Plague The 2012 documentary and 2016 book by journalist David France follow activists’ push for the development of effective HIV treatment.

Let the Record Show: A Political History of ACT UP, New York, 1987–1993 Sarah Schulman’s 2021 book reassesses the common narratives around this famed coalition.

Never Silent: ACT UP and My Life in Activism A memoir by current POZ cover boy Peter Staley. Read an excerpt on page 22.

Larry Kramer: In Love & Anger The iconic, irascible cofounder of ACT UP is the subject of Jean Carlomusto’s 2015 HBO documentary.

United in Anger: A History of ACT UP Jim Hubbard’s 2012 documentary explores the early days of AIDS activism.

POZ PLANET

BY TRENT STRAUBE

Putting HIV on the Ballot Dallas advocate Venton Jones on why he’s running for state representative

Tell us about your district and your campaign for state representative.

This majority-minority district has a population of almost 200,000 people, of which 80% are constituents representing communities of color. The issues I am championing during my campaign are: health care, public education, jobs,

the economy, infrastructure (including our power grid) and civil and voting rights. It’s time for the next generation of leaders to represent and serve communities of color in Austin [the state capital], especially after the COVID-19 pandemic, civil and social unrest and the harmful legislation attacking our public health care and our right to vote. I see the political and nonprofit work as one and the same, with the overall goal of impacting positive change in communities.

Is the public open to your message and advocacy?

Yes! Something has changed, and a majority of people are paying closer attention to policies and to the public health as a human right conversation. People are realizing it is not something we can put off. We must be the generation to act.

Finally, in June, you’ll mark 15 years of living with HIV. How are you doing?

I feel my HIV journey is going very well.

SBPAN Mobilizes the South As CEO of the Southern Black Policy and Advocacy Network (SBPAN), Venton Jones says that since its founding in 2018, the nonprofit has “worked diligently to train and mobilize a new generation of public health leaders.” SBPAN programs and accomplishments include: • LEVEL UP, an initiative that helps executive directors, development staff, grant writers, managers and people living with HIV enhance their leadership skills; • “Organizing to End Black HIV NOW,” a digital media campaign that educates, organizes and mobilizes Black HIV groups, leaders and advocates on the front lines; • HIV Policy and Advocacy Needs Assessment, a 2020 report that pointed out gaps in HIV work among Black communities in the South; The “End • Southern Black HIV/AIDS Network and Southern Black Black HIV NOW” HIV/AIDS Advisory Council, two initiatives that unite campaign leaders so they can leverage their skills and also avoid duplicating work.

8 POZ MARCH 2022 poz.com

Venton Jones

I recently switched over to a medication that allows me to take it only once a month, and that has been great. I have learned so many lessons about how I navigate my public and physical health. I work hard to remain undetectable and regularly check in with my care team to keep myself healthy and happy. I am honored to say I am only two years away from the age of 40 and excited and blessed that I get to ask myself, What do I want for the next 40 years of my life?

(JONES) COURTESY OF VENTON JONES/OMAR RAMOS PHOTOGRAPHY: (BALLOT BOX) ISTOCK; (“END BLACK HIV NOW”) YOUTUBE/SOUTHERN BLACK POLICY AND ADVOCACY NETWORK

You were born and raised in Texas House District 100—which includes parts of Dallas and Dallas County— and now you want to represent that community in the Texas legislature (the Democratic primary is March 1).

You have worked in HIV advocacy, and you announced your candidacy on World AIDS Day. How has HIV prepared you for elected office?

I learned one of my most valuable lessons through my HIV advocacy and policy work: to never be afraid to own my power! As a person who lives at the intersection of being Black, gay and a person living with HIV, I learned to be fearless not only in fighting for my own life but also in fighting for the lives of the people around me, my village.

My policy work was so much deeper than just HIV. It was about ending racism and discrimination, improving economic outcomes and social justice and building bridges for communities to have their seat at the tables of power and influence.

What’s New in the Updated U.S. HIV/AIDS Strategy?

(PHILLIPS) COURTESY OF THE OFFICE OF INFECTIOUS DISEASE AND HIV/AIDS POLICY; (THE WHITE HOUSE AND KIDNEY) ISTOCK; (HATTOY AND LOUGANIS) WIKIMEDIA; (BEAR) BROADWAYCARES.ORG

The United States has updated its plan to end HIV. On World AIDS Day, December 1, the White House released the latest National HIV/AIDS Strategy, which covers 2022 to 2025 (the first one was launched in 2010). The strategy spells out its overarching vision as follows: The United States will be a place where new HIV infections are prevented, every person knows their status, and every person with HIV has high-quality care and treatment, lives free from stigma and discrimination, and can achieve their full potential for health and well-being across the lifespan.

This vision includes all people, regardless of age, sex, gender identity, sexual orientation, race, ethnicity, religion, disability, geographic location, or socioeconomic circumstance.

A top-line objective is to reduce new HIV cases by 75% by 2025 and by 90% by 2030—this would amount to fewer than 3,000 cases a year. The strategy offers a road map, complete with benchmarks, to attain those goals. In addition to lowering new cases, the goals include improving health outcomes for people with HIV, reducing health disparities and integrating stakeholders and community partners in these efforts.

“It’s a tremendous sign of progress that people living with

EVERYDAY March

HIV are back in the federal plan,” Naina Khanna, co–executive director of Positive Women’s Network–USA and a member of the U.S. People Living With HIV Caucus, told POZ. What else is new? The strategy calls out Harold Phillips developed the racism as a “public health threat that directly HIV strategy. affects the well-being of millions of Americans.” The updated plan also aims to direct resources to the unique needs of sex workers, transgender women, immigrants, African Americans, Latinos, Native Americans and other groups disproportionately affected by HIV. And it seeks to end HIV crime laws.

Notably, this strategy also focuses on long-term survivors and people aging with the virus and sets the goal of improving the quality of life of people with HIV, not just their viral load.

This more people-centered plan arrives courtesy of Harold Phillips, the director of the White House’s Office of National AIDS Policy, which developed and published the strategy.

“The plan is a huge step forward,” writes AIDS United’s CEO and president Jesse Milan in a blog post on the updated national strategy. “This new vision is inspiring.”

These dates represent milestones in the HIV epidemic. Visit poz.com/aidsiseveryday to learn more about the history of HIV/AIDS. BY JENNIFER MORTON

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BOB HATTOY, an AIDS activist and former aide to President Bill Clinton who spoke at the 1992 Democratic National Convention, dies of AIDS-related complications. (2007)

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BREAKING THE SURFACE: THE GREG LOUGANIS STORY, based on the Olympic diver’s best-selling book and starring Mario Lopez, airs on television. (1997)

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The Centers for Disease Control and Prevention launches “TAKE CHARGE. TAKE THE TEST,” a testing and awareness campaign focused on Black women. (2012)

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NATIONAL NATIVE HIV/AIDS AWARENESS DAY

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NATIONAL WOMEN AND GIRLS HIV/AIDS AWARENESS DAY

THE HIV JUSTICE WORLDWIDE COALITION, which campaigns to end HIV criminalization around the world, launches in Brighton, England. (2016)

Broadway Cares/Equity Fights AIDS holds its final edition of THE BROADWAY BEARS, an auction of one-of-a-kind teddy bears costumed as characters from Broadway’s biggest hits. (2012)

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Surgeons at Johns Hopkins Medical Center in Baltimore perform the first living donor HIV-TO-HIV KIDNEY TRANSPLANT in the United States. (2019)

VOICES BLOGS AND OPINIONS FROM POZ.COM

POZ AWARDS 2021 Best Celebrity Advocate: Miss Universe Andrea Meza Crowned Miss Universe 2020 in May 2021, the stunning raven-haired beauty from Chihuahua City, Mexico, is more than just a pretty face. Miss Meza is a women’s rights activist, a software engineer, a certified makeup artist, a model and a fitness and health aficionada. Also on her list of passions: sexual health and HIV. Last September, the 26-year-old was named the Madrina (madrina means “godmother” in Spanish) of the Latino Commission on AIDS, which has a long relationship with the Miss Universe Organization.

Best in Visual Arts: U Equals Fucking U From the brain and, ahem, other parts of gay adult film star Kayden Gray comes this super sexy, funny and informative romp (or roll?) of a twopart film. Part porn, part romance, U Equals Fucking U pairs Gray with avant-garde performance artist Bishop Black. The couple navigates truly hot sex while educating viewers about HIV and the fact that someone living with HIV who maintains an undetectable viral load via successful treatment cannot pass on the virus sexually, a fact known as Undetectable Equals Untransmittable (U=U). Gray has also issued a PG version (sexless, alas).

U=U has never been so hot!

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Best in Film or Television: It’s a Sin Written and created by Russell T. Davies of Queer as Folk fame, this British miniseries follows a group of young, cheeky, gay men and their friends as they navigate sex, love and friendship while the threat of a mysterious virus looms. A sometimes funny and sometimes tragic depiction of the AIDS crisis of the 1980s in the United Kingdom, It’s a Sin—like The Normal Heart and Angels in America before it—has quickly become part of the canon of HIV cultural history.

Best Virtual Event: HIV Stigma and Faith Summit Produced by GLAAD (the advocacy group focused on LGBTQ representation in media) and launched in February 2021, the first-ever virtual summit to host discussions on HIV and faith in the South aimed to educate participants about HIV issues in the Southern United States. The three-day event featured panels and workshops intended to bridge the gap between religion and HIV and sexuality as well as discussions on race, queerness and HIV stigma.

Best in Literature: My Unexpected Life: an international memoir of two pandemics, HIV and COVID-19

by Martina Clark Martina Clark was diagnosed with HIV when she was 28 and was told she had five years to live. With her life plans waylaid, she dived into activism. She had no idea that in 1996 it would lead her to become the first person living with HIV to work for the Joint United Nations Programme on HIV/AIDS. Her career had her traveling around the world spreading HIV facts and advocacy and educating everyone from students to dignitaries to hotel housekeepers. In the book, she weaves in parallels between the HIV pandemic and our newest virus, SARSCoV-2, which causes COVID-19. She tells her story with humor and insight.

Best Reason to Keep Acting Up: HIV Criminalization In the majority of states, it remains a crime to expose someone to the virus, with or without motive, intent or transmission. Thirty-seven states still have laws on the books that mainly target poorer populations, people of color, trans people and sex workers. Prosecution of these outdated and biased laws causes irreputable harm to the accused—whether or not they are convicted. Although some states—for example, Illinois, Virginia, California, Colorado, Iowa, Michigan, Nevada and North Carolina—have made great strides and modernized the language in their laws, much work remains to be done to get these unfair laws completely off the books. ■

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In an article titled “POZ Awards 2021: Winners,” the POZ editors compiled the winners, as voted on by readers, of the Sixth Annual POZ Awards, which spotlighted HIV/AIDS in media and culture. Below is an edited excerpt.

REMEMBERING TERRENCE In an article titled “Remembering Terrence McNally,” Tom Kirdahy, the late playwright’s spouse, honors him in a speech given at the 2021 live concert Remember the Ribbon: A Tribute to World AIDS Day. Below is an edited excerpt.

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errence wrote fearlessly about HIV and AIDS. He had no patience for artists who chose to ignore the disease. He thought the closet was murderous and artistic indifference was immoral.

Terrence thought it was a sin not to write about AIDS, and so he wrote passionate plays that challenged the world to respond to HIV with love and action. It is a point of great personal pride to me that Terrence never stopped writing about HIV, even when it seemed to some less fashionable to do so.

Terrence’s plays ran the gamut of emotions and perspectives. Whether it was Andre’s Mother, where Terrence explored a mother’s pain as she couldn’t accept her son’s sexuality or the cause of his death, or Mothers and Sons, when some 20 years later he brought that same character back to examine the stultifying effect that having rejected her son had on the rest of her life. But in the latter play, Terrence also went searching for forgiveness and hope— recognizing the self-inflicted wounds of parents who lost their children before it was too late to tell them they loved them and perhaps providing a road map for those parents who were entrapped by their own homophobia.

In The Lisbon Traviata, Terrence explored the deep and harmful impact that came from fear of intimacy in the

face of HIV, and in Lips Together, Teeth Apart, Terrence found a way to look at AIDS through the prism of a pair of straight couples on Fire Island whose homophobia and fear of transmission deprived them of the joy of sibling love and community. From Frankie and Johnny to Some Men to Some Christmas Letters, Terrence wrote about HIV. He was a truth teller. He was a believer in community. He was unapologetic in his outrage at government inaction and society’s indifference to people living with HIV. In Corpus Christi, he exposed religious hypocrisy and made plain his belief that the queer community had a rightful place at the table of faith. Ministering to people with HIV and AIDS was a moral obligation and the only legitimate response to anyone claiming a spiritual path.

When Terrence died from complications related to COVID [in March 2020], it was not lost on me that a pandemic fueled by government ineptitude took him from us. I have struggled to reconcile the pain of losing him with how he died. I often wonder what he would be writing right now. I know he would be writing about HIV and COVID and the importance of human connection. He would be teaching us about kindness and artistic integrity. He would be reminding us that art has the capacity to change

lives; to galvanize; to humanize; to hold us accountable.

He would be connecting the dots of history and showing us a way forward.

He would be imploring the next generation of writers to expose a society that relegates queer and BIPOC [Black, indigenous, people of color] folx to second-class citizenship. He would rage at a society that acquits Kyle Rittenhouse when George Floyd and Breonna Taylor can be murdered in cold blood. He would recognize the relationship between systemic racism, transphobia, homophobia and the continued spread of HIV. He would not be writing about COVID at the expense of HIV/AIDS. He would be reminding us that we forget history at our peril, that they are related. I know he would be writing about long-term survivors and that the HIV pandemic is not over. Indeed, he would be demanding from us that we never forget.

I am so thankful that I have his words to inspire me to keep fighting.

Let the red ribbon remind us of our obligation to keep agitating for change, to keep alive the memories of those lost to AIDS, to never forget the long-term survivors who need our help and support and to remind future generations that there is a better, more humane path forward. ■

poz.com MARCH 2022 POZ 11

SPOTLIGHT

BY JOE MEJÍA

COUNT ON ASOs

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Whether their goals are to raise funds and awareness, to educate and provide care or to meet an emergent need, AIDS service organizations (ASOs) and HIV/AIDS advocates persevere—despite the COVID-19 pandemic. Even the fear and confusion surrounding the holiday surge of the omicron variant of the coronavirus couldn’t stand in the way of these heroes’ efforts to close out 2021 and kick off 2022 serving their communities.

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1. Each year, the San Francisco AIDS Foundation organizes a Santa Skivvies Run (skivvies not pictured), a combination fun run and walk to raise money for health justice and lifesaving services. In December, community members and partners raised $73,000. 2. Thanks to generous donations and sponsorships of children, Birmingham’s AIDS Alabama delivered Christmas gifts to all 65 children in its housing programs as well as to the children in its Latinx Outreach Program. 3. New York City–based GMHC staff and volunteers delivered special holiday meals to GMHC clients as well as knapsacks packed with warm socks, gloves, scarves and toiletries—the items most requested by people experiencing homelessness or unstable housing. 4. In December, the LA-based Elizabeth Taylor AIDS Foundation, Gilead Sciences and HIV is Not a Crime presented playwright and activist Lee Raines’s play Unjust, which was followed by a panel discussion about the need to modernize unjust HIV criminalization laws.

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(1) SF AIDS FOUNDATION/INSTAGRAM; (2) AIDS ALABAMA/INSTAGRAM; (3) GMHC/INSTAGRAM; (4) ETAF/FACEBOOK; (5) ALIVENESS CENTER/INSTAGRAM; (6) COMPASS CENTER/TWITTER; (7) NORTHERN NEVADA HOPE/INSTAGRAM; (8) HHRC/INSTAGRAM

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5. Runners bared all on Minneapolis’s Stone Arch Bridge to fight stigma during the Second Annual World AIDS Day Red Undie Run organized by Minnesota's Aliveness Center. 6. In January, the Southern Most AIDS/HIV Ride 18 awarded $205,208.18 to the Compass Center of Palm Beach County, Florida—just one of many ASOs benefiting from the nearly $1.23 million raised. 7. Reno’s Northern Nevada HOPES, which serves people with HIV, LGBTQ people, homeless people, women and children, collected over 500 pairs of socks at the start of the year for its residents and homeless patients. 8. The Hawai'i Health & Harm Reduction Center, which reduces the harm and fights the stigma of HIV, hepatitis, home­ lessness, substance use and mental illness, meets people where they are. On Tuesdays, that means its street medicine team delivers services to residents of Honolulu’s Chinatown.

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Send your event photos to POZ at website@poz.com or tag us on Facebook, Instagram or Twitter.

For a list of community events, visit poz.com/calendar.

poz.com MARCH 2022 POZ 13

BASICS

BY LIZ HIGHLEYMAN

TREATMENT ADHERENCE Taking your medications as prescribed helps you get the most from HIV treatment.

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require just one pill once daily. If you’re using a combination that involves multiple pills or more frequent dosing, ask your doctor whether a simpler regimen might be right for you. In addition, certain medications are more “forgiving” if you occasionally miss a dose.

Most HIV medications must be taken every day, but the new long-acting regimen Cabenuva (injectable cabotegravir plus rilpivirine) is taken just once monthly.

However, you will need to visit a clinic every month to have a health care provider administer the shots.

When starting treatment for the first time or switching to a new regimen,

ADHERENCE TIPS

1. Keep your medications near something you use regularly, such as your coffeepot or toothbrush.

2. Beware of schedule changes; some people have trouble remembering to take their meds on days off from work or school or during vacations.

3. Sign up for a reminder; some AIDS service organizations, pharmacies and websites will call or text to remind you to take your meds.

4. Set an alarm on your phone or watch for the times of day when you need to take medications.

evaluate your lifestyle for potential obstacles to good adherence. When making treatment decisions with your doctor, discuss your daily schedule, other medications you’re taking, what side effects you can tolerate and what to do if you miss a dose.

Lapses in treatment adherence can happen to anyone. Don’t feel bad or guilty if you sometimes miss a dose, but resolve to do better for the sake of your health. Talk to your health care provider, pharmacist or case manager if you have trouble taking your medications as prescribed and need help addressing adherence challenges. ■

5. Ask a friend or family member to remind you to take your meds on schedule.

6. Organize your medications in a weekly or monthly pill box.

7. If you need to take your meds while outside the house, check out portable pocket-size pill cases.

8. Travel with your meds in your carry-on luggage, and bring a few extra doses in case of flight delays or other unexpected events.

9. Make sure to regularly refill your prescriptions so you don’t run out of your medications.

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REATMENT ADHERENCE means taking the correct dose of your medications every time, exactly as prescribed by your health care provider or recommended by your pharmacist.

To keep viral load suppressed, antiretroviral medications must be maintained at high enough levels. If drug levels fall too low, the virus can resume replication, which can lead to disease progression and increase the risk of HIV transmission.

In addition, poor adherence can result in drug resistance, which can cause your meds to stop working and limit your future treatment options.

Several factors can affect adherence, including your attitude and mood.

People who feel that they’re benefiting from their medications have an easier time adhering to treatment, while people who experience depression may have more difficulty. People who are concerned about side effects may be reluctant to stick to their treatment, and those who have trouble affording their medications may be tempted to take them less often to stretch their prescriptions. In addition, caregiving responsibilities, an unpredictable or overwhelming schedule, an unstable living situation and overuse of alcohol or drugs can interfere with adherence.

Many modern antiretroviral regimens

If you are living with HIV, ask yourself the following questions: Have I lost weight?

Have I lost weight without trying?

Does the change in my weight impact how I feel about myself or my health?

Is my clothing looser than before because I have lost weight without trying?

Have those I know mentioned that my appearance has changed?

Do I have less energy?

Are any of my usual activities more difficult to perform?

Am I exercising less than in the past?

Do I need to take a break more often?

Do I tire more easily after certain activities?

If you answered “yes” to any of these questions, take this questionnaire to your next appointment with your healthcare provider to start a conversation about HIV-associated wasting and to inquire about treatment. Together you can discuss next steps. To learn more about HIV-associated wasting, visit: AmIWasting.com

EMD Serono is a business of Merck KGaA, Darmstadt, Germany ©2020 EMD Serono, Inc. US-NONE-00026

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CARE AND TREATMENT

BY HEATHER BOERNER

STIGMA AND MISSED MEDS GO HAND IN HAND Missed two or more doses of your HIV meds in the last month?

Stigmatizing comments and experiences may be partly to blame, according to a study published in the journal AIDS and Behavior.

In a study of 762 people receiving HIV care in the Southeast, 51% reported that they had experienced HIV-related stigma during the past year. While rare, people said this came from clinic staff— from workers donning extra gloves, for example, during an exam to staff bad-mouthing people with HIV. Anecdotally, people living with HIV reported hearing staff denigrate clients for their HIV status, their drug use and their low income, among other things. Plus, 17% of participants had witnessed a staff person disclosing their HIV status without their consent.

These experiences were associated with missing two or more doses of antiretrovirals in a month. For each increase in perceived stigma in health care settings, people were 38% more likely to miss two or more daily doses of their meds. People who worried that just going to the clinic would reveal their status were 29% more likely to miss doses. Among people of color in the study, stigma in medical care was associated with a twofold decrease in regularly taking medications.

And these findings are for people currently in care, who generally stated that their own HIV clinic was nonjudgmental and provided extra support when they needed it. This led one respondent to worry about people not receiving care.

“I wonder how many people are not going to get the medical care they need, and not get the meds they need... because they don’t want to deal with that,” the participant told researchers. “They feel like we’ve all felt, and that’s scary to me.”

Worldwide, nearly 80% of adults living with HIV who are on antiretroviral treatment achieve an undetectable viral load within a year, but sustained viral suppression over time remains a challenge. What’s more, progress among children and adolescents is lagging compared with adults.

Starting antiretroviral therapy and reaching an undetectable viral load are the most important steps HIV-positive people can take to improve their overall health and prevent transmission of the virus. The Joint United Nations Programme on AIDS (UNAIDS) targets for 2030 call for 95% of people with HIV to be aware of their status, 95% of those diagnosed to be on treatment and 95% of those on treatment to achieve and maintain viral suppression.

A study by researchers with the IeDEA (International Epidemiology Databases to Evaluate AIDS) collaboration shows that the world has made good progress toward the first goal.

The analysis included 255,662 adults and 21,594 children and adolescents living with HIV who started antiretroviral therapy between 2010 and 2019.

After adjusting for missing viral load measurements, the researchers estimated that 79% of adults achieved viral suppression one year after starting treatment, 72% still had an undetectable viral load after two years and 65% did so after three years. However, the proportions were lower for children and adolescents: 64%, 62% and 59%, respectively.

In the United States, the Centers for Disease Control and Prevention (CDC) estimates that 66% of people diagnosed with HIV have achieved viral suppression, which is among the lowest rates in high-income countries. But the CDC does not routinely report viral suppression among people on treatment, and that number would be higher.

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Most Adults Worldwide Achieve Viral Suppression

Aging With HIV and Other Chronic Conditions Study findings presented at IDWeek 2021 show that mental health conditions and heart disease are driving rising rates of polypharmacy and multimorbidity among people living with HIV. Polypharmacy is a fancy word for taking multiple medications, and multimorbidity simply means having more than one chronic condition. About 65% of all Americans fit the bill in 2016, and people aging with HIV are even more susceptible.

Indeed, between 2014 and 2018, the proportion of people with HIV who were taking multiple meds rose by 7%, to 76%.

Some of this was driven by increased use of HIV medications, which 65% of people in this cohort were taking by 2018. But most of the meds were for the usual conditions of aging, most commonly cardiovascular disease, anxiety or depression, diabetes, osteoporosis and lung disease.

PEOPLE LIVING WITH HIV ARE AT RISK FOR HEART DISEASE Should you get heart disease tests along with your CD4 counts? Two studies suggest that screening for both may improve longevity. Data from a study of Austrian people with HIV published in the International Journal of Environmental Research and Public Health suggest that high CD4 T-cell counts are linked with longer life and reduced mortality for people with just about all health conditions.

Researchers from the Austrian HIV Cohort Study Group looked at causes of death for people with HIV from 1997 to 2014. Overall, mortality dropped by two thirds, and most of those deaths could be explained by low CD4 counts.

But that wasn’t the case for people who died of heart conditions, who weren’t protected by higher CD4 counts.

Another study of 38,868 Americans living with HIV found evidence that women, people younger than 40 and those of Asian and Pacific Islander heritage had particularly high rates of heart failure compared with their HIV-negative peers.

HIV-negative people were more likely to have many traditional risk factors for heart disease, such as diabetes, high cholesterol and high blood pressure, all of which corresponded with greater use of heart medications. People with HIV, meanwhile, were more likely to have chronic liver disease, cancer and depression and less likely to take heart-protective meds.

After more than three years of follow-up, people with HIV were 68% more likely to have been diagnosed with heart failure. In particular, women, people younger than 40 and Asians and Pacific Islanders were about 2.5 times more likely to have heart failure than their HIV-negative peers.

These findings led study coauthor Alan Go, MD, of Kaiser Permanente Northern California, and colleagues to suggest earlier and better screening of people with HIV for risk factors and signs of heart disease.

poz.com MARCH 2022 POZ 17

RESEARCH NOTES

BY LIZ HIGHLEYMAN

PREVENTION

TREATMENT

CURE

CONCERNS

On December 20, 2021, the Food and Drug Administration approved Apretude (extended-release cabotegravir) as the first long-acting injectable option for preexposure prophylaxis (PrEP).

Apretude, from ViiV Healthcare, is administered by a health care worker every other month. Two studies showed that Apretude works even better than the Truvada (tenofovir disoproxil fumarate/emtricitabine) PrEP pill. While daily Truvada is highly effective, some people find adherence is easier with the injections.

One study found that longacting cabotegravir was 69% more effective than daily Truvada at preventing HIV acquisition among men and transgender women who have sex with men. The other study showed that cisgender women who received the injections had about a 90% lower risk of acquiring HIV. In both trials, Apretude was safe and well tolerated; the most common side effect is mild injection site reactions. Only around 25% of the 1.2 million Americans who could benefit from PrEP have used it, and an additional option could help boost that percentage.

Islatravir, a long-acting antiretroviral from Merck, has hit a snag after clinical trial participants experienced falling white blood cell counts. Islatravir is being tested as a component of once-weekly HIV treatment and as a once-monthly pill or once-yearly implant for pre-exposure prophylaxis (PrEP). Some HIV-positive people in treatment trials saw a drop in their CD4 T-cell counts, while HIVnegative volunteers in PrEP trials experienced a decrease in total lymphocytes. In December, the Food and Drug Administration placed a partial clinical hold on seven studies of daily oral islatravir plus doravirine and a full clinical hold on six studies of islatravir PrEP and injectable islatravir. Merck had already halted studies of islatravir plus its experimental drug MK-8507, and Merck and Gilead Sciences also paused a study of islatravir plus lenacapavir.

Speaking with advocates, Michael Robertson, MD, of Merck Research Laboratories, said researchers are working to understand what’s causing the side effect and whether islatravir can move forward.

The International AIDS Society has launched a new global research strategy for working toward a broadly applicable cure for HIV. While antiretrovirals can keep HIV replication in check as long as treatment continues, the virus establishes a long-lasting reservoir in immune cells that is unreachable by antiretrovirals and usually invisible to the immune system. Over the years, researchers have identified two people who were cured of HIV after receiving stem cell transplants for cancer treatment as well as a small proportion of people who manage to naturally control the virus without antiretrovirals. Such cases are exceptional, but they offer proof of concept that a functional cure is possible and provide clues that may help others achieve long-term viral remission. Technological advances have improved the ability to detect tiny amounts of hidden virus, and new interventions— including broadly neutralizing antibodies, therapeutic vaccines, engineered immune cells and gene therapy— have shown early promise in animal studies.

Impaired ability to communicate can impact care and quality of life for deaf people aging with HIV, according to a recent small study. The researchers conducted a focus group with three deaf HIV-positive people over age 55 and four caregivers and community organizers.

The participants reported challenges with access to care because English is a second language after American Sign Language (ASL). In fact, some deaf people with HIV prefer to communicate via ASL interpreters rather than written English. Limited proficiency in reading English rendered many websites and other written health information inaccessible.

And without culturally competent communication, deaf people were less able to advocate for themselves in health care settings. The participants stressed the need for more health care providers who can directly communicate via ASL as well as improved training for ASL interpreters who assist with health care visits. They cited partner support, meditation, exercise and art as factors that improved quality of life.

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Islatravir on Hold

Cure Strategy

HIV-Positive and Deaf

ALL IMAGES: ISTOCK

Apretude Approved

Care you can trust. “ It’s an honor to be able to serve the community I love so much. As an LGBTQ+ person of color, I understand the challenges our communities face. As an Avita Pharmacist, my medication consults are much more effective once I have gained that rapport. Being able to live and work in my authentic truth is liberating, and I believe it helps me care for patients more effectively.

“

Tarik Smith PharmD, AAHIVP Pharmacist at Avita Pharmacy

Visit us online at avitapharmacy.com to learn more and transfer to Avita.

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ASK POZ WELLNESS TIPS FROM POZ.COM

HOW MUCH ALCOHOL CAN I SAFELY DRINK? Experts recommend no more than two drinks for men or one drink for women per day.

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women should have no more than one drink per day. For those who do not drink, there’s no reason to start in the hope of gaining health benefits. For example, experts no longer agree that red wine contributes to better heart health.

A standard drink contains 14.0 grams, or 0.6 ounces, of pure alcohol. Health risks are associated with the total amount of alcohol consumed, not the type. This is the equivalent of: 12 ounces of beer (5% alcohol content), the amount in one can or bottle 5 ounces of wine (12% alcohol content), the amount in one glass 1.5 ounces of 80-proof (40% alcohol content) spirits, such as whiskey, gin, rum or vodka, the amount in one shot.

However, some research suggests that even this low level of alcohol consumption increases health risks. One international study, for example, found that an additional 63 out of 100,000 people would develop an alcoholrelated health problem if they had two drinks a day and four more would be

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affected if they had just one drink a day.

The more alcohol a person drinks, the higher the risk. Binge drinking—or having multiple drinks on a single occasion—and heavy drinking are especially hazardous. The National Institute of Alcohol Abuse and Alcoholism defines binge drinking as five or more drinks for men or four or more for women at a time. Heavy alcohol consumption is defined as more than four drinks on any day or 14 drinks per week for men or more than three per day or seven per week for women.

What’s more, experts recommend that some people should not drink alcohol at all, including those who are pregnant, those with preexisting liver disease, those taking medications that can interact with alcohol and people in recovery from an alcohol use disorder.

Many people enjoy an occasional drink. Public health guidelines advise a harm reduction approach. It’s fine for most people to indulge on occasion.

Moderation is key.

—Liz Highleyman

Ask POZ is an ongoing section on POZ.com dedicated to answering general wellness questions. Go to poz.com/ask to read more answers, and email ask@poz.com to submit your questions!

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HE EVIDENCE IS CLEAR: Drinking alcohol is associated with a host of health problems, including liver disease and cancer.

Public health guidelines from the Centers for Disease Control and Prevention (CDC) and others allow for moderate alcohol consumption, but experts emphasize that this level of drinking is lower risk— not necessarily “safe.”

Alcohol is processed by the liver, and heavy drinking is a leading risk factor for liver disease. Now that hepatitis C can be treated easily and hepatitis B can be prevented with a vaccine, alcohol use and fatty liver disease have become the most common reasons for liver transplants in the United States.

Alcohol use has also been linked to multiple malignancies, including liver, oral, esophageal, breast and colorectal cancer.

A study from the World Health Organization estimated that 4% of cancer cases are attributable to alcohol consumption.

Other health conditions associated with alcohol include heart disease, stroke, high blood pressure, pancreatitis (inflammation of the pancreas), mental health problems and unintentional injuries.

But how much is too much?

According to the latest Dietary Guidelines for Americans, men should have no more than two drinks and

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ACT UP THIS EXCERPT FROM PETER STALEY’S MEMOIR, NEVER SILENT: ACT UP AND MY LIFE IN ACTIVISM, TAKES PLACE AS AIDS ACTIVISM BLOSSOMS. MY NEW MISSION WAS BUYING TIME. HOW COULD I forestall what seemed inevitable—dying from AIDS as a young man? Could I bolster my immune system or take an experimental drug that would add months, or even years, to the running estimate in my head of how much time I had left?

Based on what I was reading about the HIV life cycle, I knew my three-hundred-odd T cell count wasn’t in the danger zone, yet...but it wasn’t that far from it either. Below two hundred is when your chances of getting an opportunistic disease rise significantly, so I figured that as long as I stayed above that, I had at least two years ahead of me. If I dropped below that? Then the two-year clock would start ticking down.

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HIV itself doesn’t kill you. Instead, it slowly depletes your T cells. And once your immune system is severely weakened, some other bug or cancer takes advantage and knocks you off, grabbing the opportunity that HIV has cleared the way for.

Many of these diseases were considered rare before HIV came along. Kaposi’s sarcoma (KS), the skin cancer with its purple blotches that became a defining characteristic of a dying AIDS patient, and Pneumocystis carinii pneumonia (PCP) were the two biggest killers. If I was going to buy some time and a few extra ticks on my doomsday clock, I’d have to learn about KS and PCP, and much more.

But first, I made an emotional detour that almost led me astray: I came very close to moving to Amsterdam. I was so terrified of the possibility of not having a partner during the hard months and years ahead, someone who would be there during those scary nights when I’d wake up having soaked the sheets with sweat, that I desperately latched on to my relationship with Peter, who was back in Amsterdam attending law school.

I begged him to move to New York. I even offered to pay his tuition at one of the city’s law schools. He rightly hedged, knowing that if the relationship floundered, he might be left high and dry. Since luring Peter to New York didn’t work, maybe I could move to Amsterdam—the bank had an office there.

After consulting with my brother Jes, I marched into my boss’s office and told him a story that had a touch of truth to it, wrapped in a bunch of lies. I had fallen in love during my vacation in Amsterdam, and we were now engaged to be married. My future wife was a Dutch lawyer, and she and I had decided it was probably easier for me to get a job there than the other way around. So could I transfer to Morgan’s Amsterdam office?

Kalaris had always been a great boss, and he didn’t let me down this time. He worked the phones, convincing our Amsterdam branch to let me transfer there while setting up a one-month training program for me at our London office. By April 1986, I had moved into the five-star Brown’s Hotel in London on Morgan’s dime and was training in the European markets.

But London had lost all the joy I experienced during my

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junior year abroad. The city hadn’t changed much in five years, but I sure had. No longer the young explorer living, for the first time, in a big and vibrant city, I was now there for desperate reasons, ripping up roots, fighting off the depressing effects of London’s drizzly, sunless days. I spent each night alone in the hotel and worked each day on a windowless trading floor with other miserable traders who viewed me as an annoying outsider whom they didn’t have time to train.

I quickly felt overwhelmed. And that was before I got sick.

When the night sweats woke me in my lonely hotel room, it was a cruel reminder that my body was being overrun by a deadly virus. In the morning, I had a high

(#2) COURTESY OF TOM KEANE; ALL OTHERS: COURTESY OF PETER STALEY

1

3

4

5

1. Staley (left) and Peter Launy in Amsterdam, 1985 2. Staley (second from left) before getting arrested at ACT UP’s first anniversary action, 1988 3. ACT UP members at Woody’s, 1989 4. ACT UP general membership meeting at the LGBT Center in New York City, 1987 5. Staley (bottom left) at the Morgan Guaranty Commercial Bank Training Program, 1983 6. Staley (left) with Griffin Gold, 1987

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handle the stress that my diagnosis was putting on our long-distance, on-again-off-again romance. In retrospect, I had dodged a bullet.

If I had moved to Amsterdam, I would have missed the life-changing events that started happening in New York City during the months ahead.

WITHOUT A BOYFRIEND, AND WITH NONE OF MY IMMEDIATE family living in New York, I had a woefully small support network. I needed to find fellowship with those who were facing my same fate. I was still in the closet, not knowing a

BILL WADMAN

fever, so I called in sick. It felt like a terrible flu, but what if it was something worse than that?

The hotel kept a doctor on call for its guests. Should I reach out?

What would I even tell this doctor?

It felt too risky to tell someone I didn’t know that I had the world’s scariest disease. So instead, I just laid there in bed, on sheets still damp from sweat, feeling the full burden of fear and loneliness that AIDS might bring me in the years ahead. I eventually asked the hotel to send its doctor.

But I kept my secret, and without the full picture, he gave me some prescription-level acetaminophen.

I called in sick for a second day and hoped my “flu” was just a flu.

And thankfully, it was. But I would be hit by random night sweats for years to come, my constant reminder of the millions of virions attacking my T cells.

After I finished my training in London, I returned to New York to begin packing for the move to Amsterdam. But then one man’s decision thwarted my plans.

Kalaris called me into his office, saying, ‘”I’ve got some bad news.”

The bank’s CEO, Lewis Preston, had announced an international restructuring that would focus on cities with the largest trading markets—New York, London, Frankfurt, and Tokyo—while downsizing the bank’s footprint in smaller markets. They’d be reducing staff in Amsterdam, and there was no way the branch could Peter Staley bring in an expat while it was laying off locals.

Just like that, my plans for living with Peter in Amsterdam were dashed. I called Jes and started to sob. It was only the second time I had broken down in tears after my diagnosis—it was all finally sinking in. For the first time in my life, I had lost control of my fate.

I knew I couldn’t control when AIDS would kill me, but I had compartmentalized that fear and stayed focused on everything I could control: my career, my love life, the months or year or two years in front of me. I was losing grip on all of those things.

Within months, the relationship with Peter unraveled.

We were both twentysomethings and too immature to

single person living with HIV, when I walked into an AIDS support group in the West Village run by Gay Men’s Health Crisis, hoping to be inspired and meet others who, like me, were actively fighting for more time.

There were about twenty gay men seated in a circle, along with a counselor from GMHC. Again and again, I heard fear and resignation from the health scares and stigma the men had experienced. Many lamented that they would never have sex again. Then a wild-looking guy across from me chimed in. “I’m sorry, but I’m not about to stop having sex,” he said. “Just use a condom!”

I chuckled at his boldness while others squirmed. He noticed my reaction and continued with a campy rant on how there was no way in hell he was going to stop living to the fullest.

What a sight he was: spiky blond hair, a black leather biker jacket and blue jeans, black boots, and too many piercings to count. He was a lesson in contrasts, with a defiantly effeminate voice and mannerisms and don’t-fuckwith-me looks. I was instantly drawn to this fiercest of queens, so as the meeting ended, I made a beeline toward him.

I explained that this was my first time meeting others who were infected. “I loved a lot of the things you said tonight.

Can I buy you a cup of coffee so we can talk some more?”

His name was Griffin Gold.

He was an activist—a cofounder of the People with AIDS Coalition (PWAC)—and I latched on to him for dear life. Within a week, we had slept together, otherwise known as a gay handshake.

Griff’s funky one-room basement apartment was at the corner of Christopher Street and Gay Street in Greenwich Village, an intersection that screamed queer activism and suited him well.

Soon after, I was introduced to Michael Callen, one of the city’s most outspoken AIDS activists and another cofounder of the People with AIDS Coalition, and Michael Hirsch, its executive director, who later founded Body Positive. Griff lured me to PWAC’s small office inside donated space at a local church. “We can meet there before lunch, and you can see where things really happen,” he said.

With Gold, Callen, and Hirsch, I had found the beating heart of AIDS activism in New York: HIV-positive gay men who demanded to be heard and to live without stigma.

I was also hearing their anger. Anger at President Reagan for barely mentioning the crisis. Anger at Mayor Ed Koch for his timid response in this city with more AIDS deaths than any other. Anger at the press for rarely mentioning AIDS

and, when they did, for being called “victims” instead of people living with HIV. Griffin introduced me to a small trove of literature to help people with AIDS learn about any and all possible research leads to fight the virus, including PWAC’s Newsline, and AIDS Treatment News, published by John James in San Francisco.

I read all the back issues in the coalition’s possession.

As I climbed this learning curve, my anger began to match that of the activists I was meeting. We were almost six years into the epidemic, and our government didn’t seem to care. Those in power were standing by, just letting us all die.

Back in 1976, I was living just outside Philadelphia when a new disease killed twenty-nine people attending an American Legion convention. Our government went into high alert to find the cause and stem the epidemic of what had been dubbed Legionnaires’ disease. Within two months, the New York Times had run sixty-two stories about the outbreak—eleven of them on the front page.

But the Times waited two years after the first reported AIDS cases to run a frontpage story about what was already a far deadlier epidemic. There wasn’t a single television network news story on AIDS until a full year had passed after the first deaths in 1981.

Along with my growing anger, I experienced my first taste of grief. Griff asked me to join him at a memorial for Michael Calvert, the first PWAC board member to die from AIDS. I had only met Calvert once, just before he returned home to Atlanta around Thanksgiving. He had looked perfectly healthy but was dead by January.

His memorial was in February. And in March 1987, I finally found a place to channel my anger and grief after I was handed a flyer on my way to work, a flyer announcing ACT UP’s first demonstration, prodding me to attend my first ACT UP meeting.

I left Morgan’s chandeliered headquarters in my suit and tie and starched white shirt and fifteen minutes later walked into the linoleum-tiled, paint-peeling groundfloor meeting hall at the Lesbian and Gay Community Services Center on West Thirteenth Street. I felt like a closeted Clark Kent becoming a gay Superman, my true self, in an entirely new and surreal world. ■

“MY ANGER BEGAN TO MATCH THAT OF THE ACTIVISTS I WAS MEETING. OUR GOVERNMENT DIDN’T SEEM TO CARE.”

Excerpt from Never Silent: ACT UP and My Life in Activism

by Peter Staley. Reprinted with permission. Copyright © 2021 Chicago Review Press. All rights reserved.

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CLAIM YOUR PLACE AT OUR COMMUNITY TABLE.

BY MARK S. KING

A

TLANTA ISN’T CALLED “HOTLANTA” FOR NOTHING. It’s scorching there. I think the handcuffs I was wearing one spring day in 1994 absorbed the heat and burned my wrists.

But I had other things on my mind.

ISTOCK

The protest that day was chaotic, as all good protests are.

We had a great turnout from the local ACT UP chapter, and plenty more people showed up from the coalition of people living with HIV that I headed. I was the group’s new executive director, but my board wasn’t convinced I was enough of an activist to suit them. Maybe, I thought, as I stood handcuffed to the county health department entrance, this will help change their minds.

“Stop the madness!” we screamed, while other activists carried around a life-size cardboard coffin on their shoulders.

We had a serious problem with an unjust health department policy that directly affected people living with HIV. Our protests lasted weeks before meaningful dialogue about a policy change began.

So there I was, handcuffed and yelling my brains out, fully engaged in the street theater of AIDS activism. Our cries grew louder as police arrived and television news cameras drew closer to my shrieking, sweating face. “Can you wait until the ABC station gets here before you arrest me?” I discreetly asked the officer who approached. He obliged.

It was thrilling and scary and triumphant, and I have never felt more like a fraud in my entire life.

I WASN’T AN ACTIVIST. NOT IN THE OVERT WAY THAT was expected of me. I had spent the previous years working for a Los Angeles organization that provided emotional support to people dying of AIDS. We were care providers in the truest, most intimate way.

My new job in Atlanta, I believed, was to lead the agency

out of fi nancial hardship and promote our programs to the community. The board, however, populated largely by gay men living with AIDS, was more interested in fury than financing.

As a coalition of people living with HIV the organization practiced its mission to a fault, too often using activism and identity as insurmountable purity tests. HIV status was treated as an ace to play in any confl ict.

I believe wholeheartedly in the importance of coalitions of people living with HIV and the power of our collective voices. I had just never seen our identity weaponized against people in our own community.

During my first week on the job, I was invited to a nighttime activism action in which gravestones would be placed on the front yard of the director of the city’s largest HIV service organization. My staff abhorred her, believing she didn’t prioritize people living with HIV. I declined to participate in the public humiliation of a fellow administrator I had never met. Instead, I invited the executive directors of every HIV agency in town to a monthly breakfast for us to socialize and build trust. My coworkers were mortified.

Our agency would not accept government money, like Ryan White funding, because the board believed it might compromise our coalition’s integrity. Pharmaceutical donations were out of the question. Meanwhile, our fi nances were weeks away from insolvency when I arrived. I demanded that the board apply for pharma and government grants and then used them to put us back on fiscal track.

I recognize my part in my disastrous stint at that agency.

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WHY? BECAUSE OUR WORTH AS ACTIVISTS HAS nothing to do with our arrest record or how loud we scream at protests. Because the iconic images of our great AIDS activism history represent only a fraction of who we were then and who we are now. Because attempts to emulate the heroics of the early years of AIDS sometimes lead to a misguided fundamentalism that pits those with resources, privilege or personal desperation against their own allies. And because, God help us, our movement isn’t immune to fanaticism.

Any effective social justice effort is built on addition, not subtraction. We can use all the help we can get. Yes, there are people whose judgment I question. But it sure as hell isn’t measured by their HIV status or how many die-ins they’ve attended.

Purity tests over identity remain with us, unfortunately.

Months ago, I was debating an issue about living with HIV with another long-term survivor when I mentioned that despite having tested positive in 1985, I’ve never received an AIDS diagnosis. My T cells have never fallen below the 200-count threshold that serves as a clinical marker for the syndrome.

The long-term survivor was aghast. My disclosure effectively ended the conversation. I couldn’t possibly understand, he assumed. I might be washed in the blood, but I hadn’t nearly drowned in it.

Our community is peopled by almost-activists who felt intimidated or were made to feel they didn’t measure up, so they quietly backed out of the room. Even within our ranks, accomplished people still wince at the activist label because they’re comparing themselves unkindly to burnished images of yesteryear or they have been unfairly sidelined for one reason or another. That includes, by the way, the younger activists we so desperately need but who often report that they feel daunted by our activism history.

Some of our most effective community members share a

30 POZ MARCH 2022 poz.com

self-consciousness about whether they deserve to be viewed as activists. Their stories are instructive.

A COUPLE OF YEARS AGO, Queen Hatcher-Johnson had a hard time sitting quietly during a visit by Robert Redfield, MD, then the director of the Centers for Disease Control and Prevention (CDC), to her HIV service organization. As the Black transgender woman listened, Redfield’s language bothered her.

“He kept saying, ‘high-risk population,’ which I found really stigmatizing,” Queen tells me.

So she spoke up and called him out on it. “Who are you to say From left: Mark S. King at a 1994 protest in Atlanta; who is ‘high-risk’?” she asked Queen Hatcher-Johnson; the CDC director. “I’m a Black Matthew Rose trans woman. I take a risk when I leave the house every day.”

Queen had to be encouraged to share that story with me and even to participate in this article because she didn’t feel like the title of activist applied to her. “I still have that problem,” she confides. “If I’m not out there in the street, I’m not an activist.”

There are very practical concerns for Queen, who describes her age as “50-plus,” for not having participated in the highprofi le AIDS activism that she remembers well. “I don’t do protests,” Queen says flatly. “It’s a safety issue for me because of my gender identity.”

Queen’s track record is stellar nonetheless. She is the fi rst Black trans person in a management position at her organization, Positive Impact Health Centers, in Atlanta. She even created her job title: gender inclusive program manager.

“I was having a conversation with a senior person here one day,” Queen recalls, “and he asked me why I thought we didn’t have more people of trans experience coming through our doors. I told him we needed to incorporate hormone therapy into our services, because you cannot say you are supportive of my community and then not include that.

Hormone therapy helps confi rm our gender identity.”

After numerous meetings, the agency now provides hormone therapy among its array of clinical services and has dozens more trans feminine and masculine clients as a result.

“I created the responsibilities for my job,” Queen tells me. “That was a win for me. When I started with the agency, I just wanted to be employed. I had no idea I would be where I am now. But I wanted to be of service to the community I come from.”

Queen has well-earned pride in her promotion to a management position, but she still has goals, as much for herself as for those she represents. “I will not stop,” she says, “until I have a director position at my agency.”

ALL IMAGES: COURTESY OF THE SUBJECTS

I was young and inexperienced as an administrator, naive about asking the right questions beforehand and had more ambition than qualifications for a job that didn’t suit me.

And I’m sure my attitude suffered as it became clear I wasn’t the executive director they wanted.

I lasted barely more than a year. A board meeting was surreptitiously arranged the night of the most successful fundraising event in our history. I was fi red. The fundraising, the hobnobbing with community leaders, the grants from government and Big Pharma and my misgivings about marching in the streets were antithetical to their defi nition of true activism.

It was a humiliating punch in my gut. As a so-called activist, I was a documented failure. For years afterward, I would refer to myself as an “advocate,” believing it was the only title I deserved. The coalition thrived for another decade, fortunately, and kept my disdained funding policies in place. I’m glad it served the community so long and so well.

And yet, here I am, nearly 30 years later, defending my activism credentials and reliving the personal embarrassment of having been fi red from my job.

Queen challenged the head of the CDC and changed the public face of her organization and the services it offers without ever once shouting at a protest. Only after we discussed how crucial visibility is to our respective communities—mine as a gay man living openly with HIV and hers as a Black trans woman—did we agree that transparency is the ultimate expression of activism.

The conversation hit Queen like a revelation. “Quiet activism is still activism,” she says, finally, as much to herself as to me.

Queen Hatcher-Johnson, my friends, is an activist.

found on the federal “Ending the HIV Epidemic” initiative, because he worked with the administration on outlining its standard of care.

Matthew has challenged authority within several governmental agencies, raised the issues of racial diversity and helped map a national HIV response. His commitment is total. He has accomplished this without having been arrested at a protest and without, it is worth mentioning, living with HIV. Matthew Rose, folks, is an activist.

MATTHEW ROSE, AT 35 YEARS OLD, IS TOO YOUNG to remember the activism that defi ned the fi rst decades of the AIDS epidemic. That hasn’t kept him from being at the forefront of HIV policy and prevention debates that affect Black gay men like him. He’s currently a director at Global Health Strategies.

“We need more options for prevention,” Matthew tells me.

He explained this to the Food and Drug Administration at hearings for the approval of Truvada as pre-exposure prophylaxis (PrEP). “Black gay men have fewer sex partners and use condoms more often and yet are more likely to get HIV because there is a higher incidence of HIV in our community.”

At a CDC conference, he got explicit about the sexuality of gay men because no one was talking openly about it. “I had to really challenge their perceptions that every gay man is doing the same thing on Grindr and that this app is part of the problem, not part of the solution, or the unreality of viewing us as strict tops or bottoms.”

Pushing for clinical trials that better reflect diverse communities is central to Matthew’s focus. “We are not a monolith,” Matthew observes. “That means we must have the right proportion of Black men and women and representation for trans women. We have to get more creative to make this happen.” Matthew’s fi ngerprints can also be

STREET ACTIVISM WILL LIVE ON AS LONG AS THERE is injustice and the courage to respond to it. We see reverberations of our early history in the ferocious work of PrEP4All, in the international effort to share the Undetectable Equals Untransmittable (U=U) message, in the voter drives by the Positive Women’s Network–USA, in the successful efforts by the Desiree Alliance and others to have sex workers acknowledged in the National HIV/AIDS Strategy and in the ongoing work of ACT UP chapters around the globe.

Which brings us to you. Just as we must know our worth as people living with HIV, I encourage you to claim your place at our community table. You’ll fi nd that most of our seasoned community figures will welcome you. Call yourself anything you want. Step out of the long shadow of our activism history and fi nd your own light.

There is a time and a place for chalk outlines and crowds of righteous rage. This is now your time and your place. Use it as you see fit. Your activism forebears are cheering you on.

Activism isn’t just about what we did then. Activism is now about what you do next. ■ Mark S. King won the 2020 GLAAD Media Award for his ongoing blog My Fabulous Disease, which chronicles his life as a gay man living with HIV and the people who inspire him.

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HEROES

BY ALICIA GREEN

Kalee Garland is on a mission to end HIV-related stigma.

32 POZ MARCH 2022 poz.com

Until 1993, Kalee Garland didn’t know much about HIV except what she saw on television. That was the year she tested positive for the virus and received an AIDS diagnosis. She was 7 years old.

Unbeknownst to her family, Garland was born with the virus. She had acquired it from her mother, who until Garland’s diagnosis had been unaware of her own status.

“My mom broke down crying and told me that we both have this bug in us,” says Garland, a 35-year-old HIV advocate from San Diego. “She said it was HIV.” With help from the Elizabeth Glaser Pediatric AIDS Foundation, Garland’s parents enrolled her in two HIV drug clinical trials run by the National Institutes of Health. While both trials were hard on her young body, she fared slightly better in the second one.

“The pills [in the second trial] melted in my mouth,” she says. “I was 10 years old and had more control because I wasn’t getting liquid medications shot into my mouth [like in the first trial].”

But as a teen, Garland stopped taking her HIV meds and became very sick. She developed meningitis four times between ages 16 and 18.

“I got down to 80 pounds, and people would look at me so crazy,” she recalls. “It made me think about the luxury I had to not have my sickness show as a child.”

As a youth, only Garland’s family and close friends knew she had HIV. It wasn’t until early adulthood that she began to publicly tell people that she was living with the virus.

At age 19, she became a counselor to young people impacted by HIV at Camp Heartland (now One Heartland) in Minnesota. It was the same camp she’d attended as a child. As a counselor, she talked about growing up with HIV. “It was very cathartic to start to speak and share my story,” she says.

In 2020, Garland took a leap of faith and created the Instagram account @aidsbaby86. In her first post, a two-minute video, she explained why she chose that name for the social media feed and shared what her life had been like as a person living with HIV. “Life came hand in hand with HIV,” she explained in the video. “And I am extremely proud of all my experiences, and they’ve shaped me for who I am.

I would not change them for the world.”

Garland was surprised by all the support and love she received in the comments to her post and found a new sense of purpose. These days, she uses Instagram to raise HIV awareness, encourage people to get tested and fight HIV-related stigma.

“There is a war on stigma,” Garland says. “Stigma is hurtful, and it needs to be stopped.”

Garland wants to continue working with children and to help those living with HIV transition into healthy adults as they age with the virus. To that end, she hopes to one day open a foster home for kids.

In the meantime, she will continue to be a cheerleader for the HIV community, speaking out for those living with the virus and amplifying their voices.

“HIV is an acronym, and the first word is human,” Garland says. “We are all having a human experience.” ■

JIMMY GALT

Stigma Warrior

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Putting People First THE LANGUAGE AND TERMS WE USE TO DESCRIBE HIV AND AIDS can either help foster positive attitudes about people living with HIV or fuel stereotypes and discrimination.

Using people-first language can help reduce HIV-related stigma because it focuses on people rather than their health status and presents a more respectful portrayal of individuals.

People-first language is also free of the kinds of value judgments about a person’s behavior that may put them at greater risk of contracting HIV. In addition, using genderinclusive language can help lessen stigma surrounding HIV while also helping to promote gender equality and eliminate gender bias. We can better support those living with—and at risk of contracting—HIV by choosing our words carefully and accurately.

STIGMATIZING OR INACCURATE LANGUAGE HIV/AIDS HIV-infected person, HIVers, HIV or AIDS carrier, victim, sufferer HIV or AIDS patient Died of AIDS Full-blown AIDS HIV infections Contaminated or infected with HIV Catch, contract or transmit AIDS or catch HIV Coinfect

PREFERRED LANGUAGE Be specific. Are you referring to HIV, AIDS or both?

Person living with HIV or AIDS. Emphasize the person not their diagnosis.

Client or member of the HIV community Died of an AIDS-related illness, AIDS-related complications or end-stage HIV AIDS or end-stage HIV. AIDS has no stages.

HIV acquisitions, transmissions, cases or diagnoses Contracted or acquired HIV or diagnosed with HIV Contract, transmit or acquire HIV. AIDS is not transmitted, and HIV is not something you catch.

Contract, transmit or acquire multiple viruses

Catch, contract or transmit AIDS or catch HIV Coinfect Serodiscordant couple HIV-exposed infant AIDS orphan Compliant or noncompliant HIV is a death sentence, fatal or a life-threatening condition.

Prevent HIV infection Unprotected or unsafe sex Prostitute; prostitution Promiscuous Tainted needles; tainted blood Clean or dirty Drug user/addict A transgender, transgendered Biological sex Incorrect or assumed pronouns Sex change operation/surgery Changed gender or sex Gendered terms (mailman, manmade)

Contract, transmit or acquire HIV. AIDS is not transmitted, and HIV is not something you catch.

Contract, transmit or acquire multiple viruses Serodifferent or mixed-status couple Infant exposed to HIV Children orphaned by the loss of parents or guardians who died of AIDS-related complications Adherent or nonadherent is more positive and proactive.

HIV is a chronic, manageable health condition that can be serious for people not in care or treatment.

Reduce the risk of contracting or acquiring HIV Sex without a condom, sex without the use of PrEP or sex without an undetectable viral load. Be specific.

Sex worker; transactional sex or the sale of sexual services Having more than one sexual partner Shared needles or equipment; blood containing HIV Avoid these terms. HIV has nothing to do with one’s hygiene.

Person who uses drugs or who has a substance use disorder Person who is transgender, person of trans experience Assigned gender at birth Use correct pronouns. If unsure, ask.

Gender-affirming surgery Transitioned Use inclusive terms (mail carrier, made by humans)

This language chart was adapted from guidelines created for and by people living with HIV. Visit POZ.com/basics/language for more information and resources on using people-first language.

Special thanks to Vickie Lynn, MSW, MPH; Venita Ray, JD; Valerie Wojciechowicz; CAN Community Health; and Positive Women’s Network–USA

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