A SMART+STRONG PUBLICATION DECEMBER 2021 POZ.COM $3.99
H E A L T H ,
L I F E
THE POZ 100
&
H I V
CELEBRATING BLACK ADVOCATES
Donja R. Love
A SMART+STRONG PUBLICATION DECEMBER 2021 POZ.COM $3.99
H E A L T H ,
L I F E
THE POZ 100
&
H I V
CELEBRATING BLACK ADVOCATES
Donja R. Love
Donja R. Love is a playwright, poet and filmmaker living with HIV.
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SEE INSIDE
CONTENTS
EXCLUSIVELY ON
POZ.COM #ADVOCACY Fighting against HIV/ AIDS has always been a struggle. Much work remains to end the epidemic. POZ encourages you to get involved in advocacy. Go to poz.com/ advocacy to find the latest news and learn how you can make a difference in the fight.
THE 2021
POZ 100 Celebrating Black Advocates
D
#CRIMINALIZATION
D
#UNDETECTABLE 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.
D
POZ DIGITAL Scan the QR code (left) with your smartphone camera or go to poz.com/digital, to view the current and past issues online.
Clockwise from top left: The 2021 POZ 100 honorees include Krishna Stone, Shadawn McCants, Asha Molock and Cornelius Baker.
22 VISIBILITY IS SURVIVAL Playwright, filmmaker and poet Donja R. Love shares his vision with POZ founder Sean Strub. 26 THE 2021 POZ 100 We celebrate Black advocates, from rap stars and religious leaders to remarkable everyday folks. 3 FROM THE EDITOR Lift Every Voice and Sing
vaccines: the next HIV prevention? • health hacks for happier sex
4 POZ Q+A
16 BASICS
As America’s new AIDS czar, Harold Phillips seeks structural change and an end to the HIV epidemic.
Newly diagnosed? These eight steps will help you lead a long and healthy life.
6 POZ PLANET New HIV leadership, including at the Black AIDS Institute • five must-read memoirs and one must-see documentary • Everyday AIDS milestones for World AIDS Day
12 VOICES NMAC’s executive director Paul Kawata remembers Archbishop Carl Bean. Black leaders from nine groups, including GLAAD, recount their meeting with DaBaby.
14 CARE AND TREATMENT
Getting to the heart of cardiovascular risk • another HIV vaccine disappointment • HPV
19 ASK POZ What are the recommended cancer screening tests?
20 RESEARCH NOTES An HIV vaccine that uses the same mRNA approach as COVID-19 vaccines • rapid treatment with Dovato • $53 million in cure research funding • concerns about hep B vaccines for people living with HIV
48 HEROES Phill Wilson founded the Black AIDS Institute in 1999 and stepped down in 2018. Today, he’s processing repressed PTSD—and penning a memoir.
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. 256. POSTMASTER: Send address changes to POZ/Smart + Strong, 157 Columbus Avenue, Suite 525, New York, NY 10023. Copyright © 2021 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; (STONE) BILL WADMAN; (OTHER POZ 100) COURTESY OF INDIVIDUALS; (GAVEL/BOOKS, BARBED WIRE AND MAGNIFYING GLASS) ISTOCK
Opinions still vary on whether criminal law should apply to HIV disclosure, exposure and transmission. However, there is a growing consensus to make laws reflect current science. Go to poz.com/ criminalization for more on how you can get involved in reform efforts.
FROM THE EDITOR
Lift Every Voice and Sing
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‘M GRATEFUL FOR SO MANY things in my life. For example, even now, during such arguably chaotic times, I remain pleased to serve POZ readers. If anything, I’m convinced that POZ remains as much of a vital touchstone as ever for both my fellow folks living with HIV and our allies. To that end, although COVID-19 made us pause our annual POZ 100 list in 2020, we are excited to relaunch it. Each year, the list spotlights the efforts of HIV advocates. As the list has evolved, various groups have been highlighted, such as long-term survivors, youth, women and transgender people. In 2021, the POZ 100 celebrates Black advocates regardless of their HIV status. This year’s list spans the gamut of people involved nationwide in HIV/AIDS advocacy. We strove to create a varied list that includes everyone from everyday folks to celebrities, from fresh faces to those who are well known in the community for their contributions. We know that no list can ever be exhaustive, but we are hopeful POZ readers will agree that this year’s POZ 100 is representative. Go to page 26 to read more about the honorees. Speaking of representation, our cover subject, Donja R. Love, is a great example of someone who seeks to amplify the stories of people who are often overlooked. He is a playwright, poet and filmmaker living with HIV. Among his many works is the play one in two, about surviving and thriving as a gay Black man who has the virus. In addition to being on the POZ 100 list this year, he is also interviewed by none other than POZ founder Sean Strub. Go to page 22 to learn more about Donja’s art and vision. The POZ 100 cover has depicted just one person before, but we’ve mostly favored having multiple people on the covers to showcase the diversity of the list. As a result of restrictions amid the ongoing COVID-19 pandemic, we went with one person this year. But that wasn’t the only reason. We loved the photos of Donja. Much credit goes
to Donja, of course, but also to photographer Bill Wadman as well as to novelist John Berendt, who let POZ use his New York City home for our photo shoot. Thank you to all. The title of Donja’s play one in two refers to the statistic that one in two gay Black men are expected to test HIV positive in their lifetime, if current trends do not change. The stat is unfortunately just one of numerous examples of the disproportionate impact HIV continues to have on the lives of Black people. Phill Wilson knows all about that. He is the founder and former president and CEO of the Black AIDS Institute (BAI). He’s retired from BAI. However, in the wake of ongoing turmoil at BAI, he felt compelled to speak out. Not only is Phill on this year’s POZ 100 list, but we also spotlight his years of advocacy on page 48. The December print issue of POZ always coincides with World AIDS Day, which is marked each year on December 1. The day is associated with global HIV/AIDS, but since it’s often one of the only times each year mainstream media pays any real attention to the virus, we dedicated a full page to mark related milestones. Go to page 10 for more.
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 DECEMBER 2021 POZ 3
POZ Q+A
BY HEATHER BOERNER
World AIDS Day ribbon at the White House
The new Office of National AIDS Policy director seeks structural change and an end to the HIV epidemic.
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EOPLE TELL HAROLD PHILLIPS, MRP, THAT HE’S AN EXTROVERT. But he’s not so sure, especially when it comes to “the work”—his life’s work advocating for people affected by HIV and making policy in state and federal government agencies. “I’ve always just been doing the work, doing what looks and feels like it’s the right thing to do,” he says. “And here I am.” Here he is, indeed. Phillips, who has a master’s degree in regional planning, has worked with the Ryan White Program, served as chief operating officer of the Ending the HIV Epidemic initiative and in June became the ninth director of the Office of National AIDS Policy (ONAP), a position also known as the U.S. “AIDS czar.” When he accepted the role, the United States hadn’t had an AIDS czar since 2016. This interview has been edited for length and clarity. How did you become involved in the HIV community and policy making?
I was always involved in tracking issues around the disability community and women’s reproductive rights. Then, I got involved in AIDS work and was part of those groups of people who would march on Washington, DC, and do the candlelight marches and volunteer at organizations. In graduate school in North Carolina, I was studying urban planning; I was going to do community development work. We were seeing the beginnings of the HIV housing crisis. When I learned that folks were coming home sometimes to die with loved ones [and about] those who were struggling between food and rent and medication, [I decided to do a class project on it].
4 POZ DECEMBER 2021 poz.com
I was doing the research and writing a paper as the HOPWA [Housing Opportunities for People with AIDS] program was starting. The AIDS director for the state of North Carolina at the time called and said, “Hey, we’ve heard you’ve written this paper. We’ve applied to HUD [the Department of Housing and Urban Development] for some funding for people with HIV and don’t know a thing about what to do. They’re going to send us $2 million. Can you meet with us and talk about what we might do as a state?” As a graduate student, I was like, “Sure!” So I helped the state think through rental assistance for people living with HIV and adult day care [to relieve their caregivers], who were stressed out, exhausted and needing the assistance of someone to watch their loved ones. This was in 1992 or 1993. I was going around to different AIDS providers as well as housing coalitions to get them to understand the issues but also meeting with folks who were in that situation.
SHUTTERSTOCK
NOT LOST
How are things going in your new role?
Having the support to bring together different departments—HUD, the Department of Agriculture—and thinking about educational settings and ensuring that we have a diversity of programs and a diversity of voices that are helping to influence policy has been great. We’re looking to revise the National HIV/AIDS Strategy by World AIDS Day, so some of the meetings that we have had with the departments [have been about] getting them to think strategically about how we do this work. We’ve had some initial conversations with them about some of the factors that put individuals at risk for HIV as well as some of the challenges that individuals have when it comes to maintaining the connection to medical care and taking medication and the life circumstances that get in the way. While [many programs in other departments] may not be HIV specific, we can use them to increase awareness at the community level of enrollment in HIV care and eligibility for care. One of the things that I think we’ve struggled with is that by the time someone becomes HIV positive and reaches our clinic doors, there’s a host of things we could have done to keep that individual from becoming sick. So if we had worked on the housing issues, if we had worked on the employment issues... I forgot to mention the Department of Labor has also been a great partner to have at the table lately, thinking about HIV and employment and income inequality issues. It’s been exciting to be able to have those conversations and have a group at the table that understands these things and is looking at ways for a greater partnership with our traditional HIV stakeholders.
table]. I was working in the Ryan White Program, and we were talking about what we might or might not say about U=U. Should we put out additional guidance to Ryan White recipients and the community around this? Being a person in that room living with HIV, I shared my personal experience that, even with everything that I know, I still have that small piece of internalized stigma. I shared with them a story of chopping vegetables with my nieces. I accidentally cut my finger, and I just freaked out. They wanted to help me put a bandage on it. And I was like, “Girls, get away. I’m fine.” In that moment, you didn’t feel like you could let your nieces kiss your boo-boo?
Exactly. I ran off to the bathroom to clean
Harold Phillips
COURTESY OF OIDP
I have been fortunate to be able, especially among respected colleagues, to not only talk and speak from what’s happening at a population or community level but also to add my personal experience. One time when I thought that was important and I saw a powerful change happen was around the messaging for U=U [Undetectable Equals Untransmit-
What was the message you sent out?
We reiterated the data. We talked about the importance of viral suppression and not being able to pass the virus on to others, especially your sexual partners. We also talked about the importance for health care workers to deliver this message and to use it both as an incentive to get individuals into care and to help them stay in care and remain undetectable.
“If we can do something to alleviate that stigma, we need to do it.”
up the blood quickly. I realized my reaction scared them more than the actual cut. I had to sit down with them and talk them through it and explain to them that I was fine and that I think I overreacted: “And look, I got a bandage. It’s OK. Let’s go back in and finish dinner.” Because you were undetectable?
You are a Black gay man living with HIV. How does that inform your policy work?
and worked on what that guidance would be, which would go out to providers and to people living with HIV, endorsing the message. I don’t know if we would have moved as quickly and in the direction that we did if I hadn’t been there sharing my painful experience.
Yes. It made no sense, but I had to acknowledge that fear. If it’s happening to me—somebody who’s undetectable and knows there’s no chance of transmitting the virus—then we need to begin messaging this differently. I told this story to colleagues, and I said that every person living with HIV has that fear. If we can do something to alleviate that stigma, we need to do it. So we put together a work group
What would you say to your younger self about what’s possible for you as a person with HIV?
It’s not lost on me when I’m running around the White House campus that I’m in a place that was built by slaves. When I run into the Eisenhower Building, I know that the Eisenhower administration had the executive order about “sexual perversion,” [classifying gay people as] a national securit y threat. They drummed out a lot of federal civil servants who were gay. So it’s not lost on me when I stand there sometimes. I just take it all in and just think, “You’re doing this.” That I have the opportunity to try to make our country a better country— it’s not lost on me, and I do not take it lightly. ■
poz.com DECEMBER 2021 POZ 5
POZ PLANET BY TRENT STRAUBE
Turmoil and Transitions at the Black AIDS Institute Copeland “brought charges of bullying, harassment and creating a hostile work environment” against her supervisor, BAI’s board chair, but that a proper investigation wasn’t initiated. Then a group of HIV leaders published a sign-on letter urging that Copeland be reinstated and that those still on the board step down to be replaced by a more representative group. BAI’s founder and former president/CEO, Phill Wilson (who is profiled on page 48), posted an opinion piece via Facebook. “I have no confidence in the current board,” he wrote, adding that the board has only one gay Black man and no one living with HIV; nor are there any transgender members or open lesbians or anyone from Los Angeles where the nonprofit is headquartered and offers direct HIV services. “The future of BAI, its work, and its dedicated staff are in danger, unless the community steps up now,” Wilson wrote. “We cannot afford to lose another Black organization.”
From top: BAI’s founder and former president and CEO Phill Wilson, interim CEO Toni Newman and recent president and CEO Raniyah Copeland
OTHER 2021 TOP-LEVEL CHANGES IN HIV ADVOCACY
Maryum Gibson is the new president and CEO of Jerusalem House, Atlanta’s oldest and largest provider of housing and services for low-income families and people who experience homelessness and are affected by HIV/AIDS.
The Presidential Advisory Council on HIV/AIDS (PACHA) started meeting again. Eight new members were appointed, bringing the total to 22, including codirectors John Wiesman, DrPH, and Marlene McNeese. PACHA has convened since 1995— except during the Trump era.
6 POZ DECEMBER 2021 poz.com
The new CEO of Chicagobased HIV organization TPAN is Kara Eastman. Originally known as Test Positive Aware Network, TPAN also publishes Positively Aware and spearheads the annual anti-stigma campaign “A Day With HIV.”
President Biden appointed John Nkengasong, MD, as head of the President’s Emergency Plan for AIDS Relief (PEPFAR), the federal agency that serves people with HIV worldwide. For the first time in its 18-year history, PEPFAR will be headed by an African public health leader.
A gay man who is living with HIV, Andrew Spieldenner, PhD, became the executive director of MPact Global Action for Gay Men’s Health and Rights. A former vice chair of the U.S. People Living With HIV Caucus, he’s also a regular POZ blogger.
The United States has a new AIDS czar (the post was vacant under President Trump). Harold Phillips, a Black man with HIV, leads the White House Office of National AIDS Policy (ONAP). On December 1, it will release an updated National HIV/AIDS Strategy (see our Q&A on page 4).
(WILSON) COURTESY OF BFA.COM/TIFFANY SAGE; (NEWMAN) COURTESY OF TONIDNEWMAN.COM; (COPELAND) COURTESY OF BAI; (GIBSON) COURTESY OF JERUSALEM HOUSE; (WIESMAN) COURTESY OF GILLINGS SCHOOL OF PUBLIC HEALTH AT UNC; (MARLENE MCNEESE) COURTESY OF HIV.GOV; (EASTMAN) COURTESY OF TPAN.COM; (NKENGASONG) TWITTER/@JNKENGASONG; (SPIELDENNER) LINA CHERFAS; (PHILLIPS) COURTESY OF THE OFFICE OF INFECTIOUS DISEASE AND HIV/AIDS POLICY
Founded in 1999, the Black AIDS Institute remains the nation’s premier HIV advocacy group for African Americans, a population disproportionately affected by the epidemic. In August 2021, however, discord surfaced when the board announced that Raniyah Copeland would no longer serve as president and CEO. A month later, the board said that Toni Newman, a transgender leader, would step in as interim CEO. Kemal M. Atkins, EdD, was named managing director, and Pat Bass and Chris Bates were brought in as consultants. “My goal,” Newman tells POZ, “is to work with the BAI leadership team and Dr. Kemal Atkins to uplift, encourage and support the BAI staff through this transition. I have been working to end the HIV/AIDS epidemic in the Black community for a long time, and BAI is at the core of that solution.” After Copeland’s ouster, four HIV activists—all current or former board members—launched a Change.org petition urging the BAI board to resign and make way for a new one to govern. They also alleged that in January 2021
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Dancer From the Dance A new film honors Alvin Ailey, a Black dance icon lost to AIDS.
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MUST-READ MEMOIRS Five riveting and inspiring tales of life with HIV Flight of the Beautiful Lie By Jasmine Christine Ford HIV doesn’t appear until the last chapters of this tell-it-like-it-is memoir of profound transformations. But as a Black transgender woman who survived childhood sex abuse, discrimination in the church and a career as a sex worker to pay for her addiction to plastic surgery, Jasmine Christine Ford knows about overcoming extreme obstacles and navigating HIV risk. 1
Living and Loving in the Age of AIDS By Derek Frost In this love story from across the pond, Derek Frost and Jeremy Norman—who in 1979 founded London’s legendary gay nightclub Heaven—enjoyed a glamorous life after gay liberation. But when Norman tested HIV positive in 1991 (Frost, by luck, remained negative), the duo turned their energy and know-how to global AIDS advocacy.
(AILEY) COURTESY OF NEON
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My Unexpected Life By Martina Clark After her diagnosis in 1992 at age 28, Martina Clark found her voice as an advocate for women, becoming the first openly HIV-positive person to work for UNAIDS, the United Nations HIV 3
agency. While revealing her personal struggles and triumphs, the memoir offers an accessible look at global advocacy and the work needed to tackle discrimination and misinformation within such agencies. Never Silent By Peter Staley Whether strategizing how to lose his virginity in 1981, staging a national protest against HIV drug pricing in 1989 or sounding the alarm about crystal meth use among gay men in 2004, Peter Staley has always been a man with a message. Luckily, this ACT UP poster boy and one of the subjects of the film How to Survive a Plague is also a gifted storyteller. 4
If you prefer watching your biographies instead of reading Alvin them, then Ailey keep your eyes open for Ailey, coming soon to the small screen. It’s the story of trailblazing choreographer Alvin Ailey, the African-American icon who opened his own studio in 1958 at age 27. Ailey battled racism, addiction, mental health issues, homophobia and AIDS (he died in 1989), but throughout his life, dance offered Ailey salvation— and cemented his legacy.
Unprotected By Billy Porter While starring in the hit TV series Pose, earning a Tony and Grammy for Broadway’s Kinky Boots and serving red carpet lewks to the children, Billy Porter had a secret. He has been living with HIV since 2007, a fact he disclosed earlier this year. Now, he shares his journey from bullied and abused effeminate child to proud international icon. 5
poz.com DECEMBER 2021 POZ 7
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
POZ PLANET
BY JENNIFER MORTON
EVERYDAY: WORLD AIDS DAY EDITION World AIDS Day, observed each year on December 1, marks an opportunity for people across the globe to unite in the fight against HIV, show their support for people living with HIV and commemorate people who have died. Here are some World AIDS Day milestones.
1989
Visual AIDS launches DAY WITH(OUT) ART. The annual event was established to make the public aware that AIDS affects everyone.
1992
The U.S. Centers for Disease Control and Prevention launches the BUSINESS RESPONDS TO AIDS PROGRAM to help large and small businesses meet the challenges of HIV/AIDS in the workplace and the community.
1993
With support from the United Colors of Benetton, ACT UP Paris slips A GIANT PINK CONDOM over the city’s Luxor Obelisk, located in the center of the Place de la Concorde.
1994
The first official observation of World AIDS Day at the NATIONAL AIDS MEMORIAL GROVE IN SAN FRANCISCO takes place.
2005
The WHO launches “3 BY 5,” an initiative to bring treatment to 3 million people by 2005.
2006
Serodiscordant couple SHAWN DECKER AND GWENN BARRINGER stage a “bed-in” at a Kenneth Cole store in Grand Central Station to commemorate World AIDS Day and raise awareness about safer sex.
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2010
Celebrities such as Lady Gaga, Usher, Alicia Keys and Justin Timberlake (pictured) join the “DIGITAL LIFE SACRIFICE” campaign and pledge to log off Facebook and Twitter on World AIDS Day until Keep a Child Alive raises $1 million for its programs.
2014
The New York City World AIDS Day Coalition launches the “END AIDS NY 2020” campaign to end AIDS and reduce new HIV infections to 750 per year by 2020.
2016
THE NEW YORK CITY AIDS MEMORIAL, a tribute to the over 100,000 New Yorkers who have died of AIDS-related illness, is unveiled at a public dedication on World AIDS Day.
2017
PRINCE HARRY AND MEGHAN MARKLE visit a Terrence Higgins Trust World AIDS Day charity fair in Nottingham, England. The event marks their first public appearance as an engaged couple.
2018
Five trucks with large LED billboards drive around New York City displaying quotes by activists, artists, educators, poets and people living with HIV for an “interactive art experience” titled #LIGHTTHEFIGHT. The project is a collaboration between artist Jenny Holzer and the NYC AIDS Memorial Arts and Education Initiative.
(OBELISK AND AIDS MEMORIAL) ISTOCK; (GAGA, USHER, KEYS, TIMBERLAKE AND ROYALS FLAG) SHUTTERSTOCK: (SHAWN AND GWEN) JONATHAN TIMMES
1988
The World Health Organization (WHO) launches WORLD AIDS DAY.
29 July – 2 August · Montreal & virtual
It’s time to re-engage and follow the science Join the world’s largest gathering on HIV and AIDS Register now at
aids2022.org
POZ534559.pgs 10.18.2021 16:14
ESA
VOICES BLOGS AND OPINIONS FROM POZ.COM
R.I.P. CARL BEAN
A
rchbishop Carl Bean recently passed. I’m not ready to say goodbye to the man who changed the course of my life. It was Carl who talked me into taking the job at NMAC. Carl was my friend and partner in crime. We were each other’s lifeline in the storm called AIDS. Together, we navigated some of the most difficult days in the epidemic. I will never fully understand the burden of leading a religious movement, but I often saw it in his eyes as members reached out for answers to impossible questions like, “Why did God take my child?” Carl and I traveled the world together. Most of these trips were work-related because Carl was asked to preach all around the world to bring his unique voice of liberation theology that God is love and love is for everybody. I never knew Carl the Broadway entertainer, but from his stories, I imagine he was amazing. He could talk, and I could listen to him reminisce for hours about performing on Broadway or touring the country. It was his work in the entertainment industry that would later support his fight to end HIV. I remember sitting next to him when Whitney Houston performed at a benefit for his agency. Those were very heavy times. He had Dionne Warwick on speed dial, and Maxine Waters not
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only returned his calls but also called to check in. While it might seem glamorous on the outside, it was also a huge burden. People would cry as they reached out to hug him. Members of his church would copy his sermons because his words were touched by the Holy Spirit. I think that can mess with your mind and was part of the reason Carl went into seclusion. For many years, he did not leave his home or welcome visitors. However, Carl always had God. I was not religious. I felt the church had turned its back on me and my kind. Before meeting Carl, I had never attended services in a Black church. Going to Carl’s church was mindblowing. My friend was singing and preaching like he was touched from above. You could almost watch him go to another place as he spread the gospel of the Lord. As a child, I went to Japanese Presbyterian Church. That was the opposite of my experience in Carl’s church. To be in a room full of love was transformative, especially because this was in the mid-1980s during some of the most difficult times in the HIV epidemic. The Unity Fellowship Church Movement we take for granted now was truly revolutionary when Carl started it. He started a religious movement for
the African-American LGBTQ community at the height of the HIV epidemic. Out of his work with the Unity Fellowship Church Movement, he opened the Minority AIDS Project (MAP), the first minority-led HIV organization. As the executive director of MAP, Carl worked nationally as one of the founders of NMAC. It was our work at NMAC that served as the foundation for our friendship. Together, we would travel the country, him preaching and me teaching about HIV. Back then, people of color were too often marginalized. Carl and I became a team to fight the stigma and racism that was too prevalent in our work. We would spend hours talking about race and our frustrations with people in power. His concerns for his communities became the cornerstone of the work. Carl was a living example of liberation theology. I got to talk to Carl the day before he passed. He was in a coma, so they had to hold the phone to his ear. I thanked him for being a gift to my life and our movement. I let him know that it was OK to let go. His was a life well lived. Finally, I told him that I loved him and will miss him. This is a ritual from the early days of the epidemic that too many of us know too well. Thank you, Carl for being my friend. My life is better because you were in it. ■
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In a blog post titled “Remembering Carl,” NMAC executive director Paul Kawata shared his remembrances of his friend, one of the founders of the National Minority AIDS Council. Below is an edited excerpt.
MEETING DABABY In an opinion piece titled “Black HIV Advocates Meet DaBaby: ‘Call Him In Instead of Calling Him Out’” originally posted on GLAAD.org, Black leaders from nine groups released a joint statement. Here’s an edited excerpt.
I
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n response to derogatory statements by rapper Jonathan “DaBaby” Kirk, representatives from the Black AIDS Institute, Gilead Sciences COMPASS Initiative Coordinating Centers, GLAAD, NMAC (National Minority AIDS Council), The Normal Anomaly Initiative, Positive Women’s Network–USA, Prevention Access Campaign (U=U), the Southern AIDS Coalition and the Transinclusive Group as well as a faith and HIV adviser wrote an open letter to the artist seeking a meeting. The meeting took place in August. The groups discussed HIV history and education as well as their work in Black, LGBTQ and faith communities. From the joint statement: The open letter to DaBaby was our way to extend him the same grace each of us would hope for. Our goal was to “call him in instead of calling him out.” We believed that if he connected with Black leaders living with HIV that a space for community building and healing could be created. We are encouraged he swiftly answered our call and joined us in a meaningful dialogue and a thoughtful, educational meeting. During our meeting, DaBaby was genuinely engaged, apologized for the inaccurate and hurtful comments he made about people living with HIV and
received our personal stories and the truth about HIV and its impact on Black and LGBTQ communities with deep respect. We appreciate that he openly and eagerly participated in this forum of Black people living with HIV, which provided him an opportunity to learn and to receive accurate information. As community leaders who understand the power of conversations as a path to education and evolution, we know that DaBaby received meaningful facts. We were also able to share personal stories about our lives as everyday people who acquired HIV. Now, we wish for him to use his platform to relay that critical information to his fan base and encourage people to get tested and know their status. During our meeting, DaBaby acknowledged that the HIV facts we presented—many of which he himself was unaware of—are what every American needs to know: HIV is preventable and when treated properly, cannot be passed on. At a time when HIV continues to disproportionately impact Black communities, celebrities and influencers of all backgrounds have the power to defeat the stigma that fuels the epidemic. We must all do our part to make the public aware of medication that can prevent HIV and to get more people tested and treated. Together we can end this
epidemic. Forty years is far too long. Stigma hurts; prevention, testing and treatment work. Quotes from community leaders: “Ending HIV stigma requires doing the hard work of changing hearts and minds, and often that begins with something as simple as starting a dialogue,” said Marnina Miller of the Southern AIDS Coalition. “We hope DaBaby will use his platform to educate his fans and help end the epidemic.” “We have to think critically and intentionally about how we truly equip and engage everyday Americans with the facts, resources and scientific advancements about HIV if we want to end the epidemic,” said DaShawn Usher of GLAAD. “We must hold the media accountable to the 1.2 million Americans living with HIV.” “Our goal is to make sure that Black people are armed with accurate information,” said the Reverend Rob Newells-Newton of the Black AIDS Institute. “We call on Black people and our allies to dismantle anti-Black racism, invest in transforming the socioeconomic conditions of Black people, ensure universal access to culturally affirming health care and build the capacity and motivation of Black communities to be the change agents for ending HIV.” ■
poz.com DECEMBER 2021 POZ 13
CARE AND TREATMENT BY HEATHER BOERNER
GETTING TO THE HEART OF CARDIOVASCULAR RISK If you’re living with HIV, you might be 50% more likely to experience heart disease compared with your HIV-negative peers, even if you’re younger than 40, have a normal body weight and don’t smoke. This is especially true for those with diabetes or hypertension. As described in the Journal of Infectious Diseases, researchers compared heart health outcomes over 20 years among 9,233 HIV-positive and 36,816 HIV-negative people in the United Kingdom. Two thirds were men, and the median age was 41. The researchers found that although people living with HIV were less likely to meet criteria for overweight or obesity and were less likely to have smoked, they were 50% more likely to experience any heart disease. What’s more, they were 42% more likely to have a stroke and 55% more likely to have ischemic heart disease, meaning the heart is not getting enough blood. When the researchers broke down the results by sex, women with HIV were 60% more likely to have cardiovascular disease than their HIV-negative peers. The good news is that peripheral artery disease, heart attacks and heart failure were less common among people living with HIV. It’s unclear, however, whether HIV-positive people who were on treatment with an undetectable viral load were as likely to have poor heart outcomes as those with unsuppressed virus or what the effects of specific HIV medications were. “The increased risk we report may therefore be due to other HIV-related mechanisms, such as persistent immune activation and inflammation caused [by] the presence of HIV viremia and microbial translocation, which occurs regardless of treatment status,” wrote Tiffany Gooden, PhD, of the University of Birmingham, and colleagues.
Another HIV Vaccine Disappointment An experimental vaccine regimen did not protect young women from acquiring HIV in a large study in sub-Saharan Africa, adding to a long string of disappointments in HIV vaccine research. The Imbokodo trial tested a primer vaccine dubbed Ad26.Mos4.HIV that uses an adenovirus vector similar to the one used in the Johnson & Johnson COVID-19 vaccine. It delivers a computer-designed mosaic of antigens from multiple HIV strains. This is followed by a second vaccine containing HIV envelope proteins. Started in 2017, the study recruited more than 2,600 young women at high risk for HIV. They were randomly assigned to receive six vaccine or placebo shots over the course of a year. In an analysis two years after the first dose, 51 participants who received the vaccine regimen and 63 of those who received the placebo injections acquired HIV. The vaccine reduced the risk of HIV infection by just 25%—far below the 50% effectiveness threshold researchers were aiming for. This is the second HIV vaccine trial failure in two years. Only one large study, the Mosaico trial, is still underway, testing a similar vaccine regimen in gay and bisexual men and transgender women. “The development of a safe and effective vaccine to prevent HIV infection has proven to be a formidable scientific challenge,” says National Institutes of Allergy and Infectious Diseases director Anthony Fauci, MD. “Although this is certainly not the study outcome for which we had hoped, we must apply the knowledge learned from the Imbokodo trial and continue our efforts to find a vaccine that will be protective against HIV.”
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HEALTH HACKS FOR HAPPIER SEX
ALL IMAGES: ISTOCK
HPV Vaccines: The Next HIV Prevention Tool? Dozens of types of human papillomavirus (HPV) can live in the human genital tract, and having one or more of them increased women’s risk of acquiring HIV by two and a half times, according to study findings published in the journal AIDS. The results come from an analysis of Pap smears from HIV-negative women who participated in an international clinical trial of an HIV prevention gel. The 138 women who acquired HIV had a median age of 23. They were each matched—based on age, country and whether they had experienced transactional sex—with three women who did not acquire HIV. In total, 84% of the women who acquired HIV had any strain of HPV; 65% of women who didn’t acquire HIV also had HPV—which makes sense, considering that most sexually active people will be exposed to HPV in their lifetime. High-risk HPV types (those that can cause cervical, genital, anal or oral cancer) were more strongly associated with HIV acquisition than low-risk types. While having any type of HPV was associated with an increased risk for HIV acquisition, having four or more HPV strains was associated with the highest risk—a fourfold increase. The good news is that if those women had received the Gardasil 9 HPV vaccine, which protects against nine HPV types that can cause cancer or genital warts, it might have prevented 60% of those HIV transmissions. “This suggests that widespread HPV vaccination may have the potential to reduce HIV risk in a high-burden setting,” wrote Gui Liu, PhD, of the Center for Clinical Research at the University of Washington, and colleagues.
Want more get-up-and-go in your sex life? An analysis published in the journal HIV Medicine found that smoking, sleep apnea and not starting HIV treatment right away might get in the way. Since 1986, researchers have been gathering data on active-duty military men and veterans living with HIV in the United States. Among 5,682 study participants, 10% received an erectile dysfunction (ED) diagnosis at some point. Nathan Jansen, DO, of the San Antonio Military Medical Center, and colleagues compared 488 men with ED and 976 men without ED matched by age at HIV diagnosis. Compared with HIV-positive men who did not have ED, nearly half of the men with ED had been living with HIV for more than four years before they started antiretroviral treatment, and that delay was associated with a twofold increase in the likelihood of an ED diagnosis. In addition, the use of a protease inhibitor for a year or more was associated with an 81% increased risk of developing ED. Sleep apnea was nearly three times more common among men with an ED diagnosis, and the sleep disorder was associated with a 2.5-fold increase in the risk of developing ED. What’s more, men with ED were twice as likely to smoke, twice as likely to have high blood pressure and more likely to have elevated cholesterol than their peers without ED.
poz.com DECEMBER 2021 POZ 15
BASICS
BY LIZ HIGHLEYMAN
NEWLY DIAGNOSED? These eight steps will put you on a path to a long and healthy life with HIV.
Get Informed Knowing the benefits of HIV treatment may help calm your fears. The amount of information can seem overwhelming, but the more you know about HIV, the more empowered you’ll be to get the care and treatment you need. Find Support A friend or family member can be a great source of support, but if you’re not ready to tell anyone yet, that’s OK. Talk to other people living with HIV who can understand what you’re going through. Many HIV/AIDS service organizations offer support groups and case management to help with your needs. Find a Doctor Establishing a relationship with a health care provider is an essential first step. See a doctor who has experience with HIV care soon after your diagnosis.
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Start Treatment Experts advise that everyone diagnosed with HIV start antiretroviral treatment as soon as possible. Modern HIV medications are highly effective, more convenient and easier to tolerate than older meds. Many require just one pill a day—or one injection a month. Effective treatment can reduce your viral load to an undetectable level. There’s no cure for HIV, so it’s important to keep taking your medications. Prevent HIV Transmission People on effective antiretroviral treatment with an undetectable viral load don’t transmit HIV to others through sex (known as Undetectable Equals Untransmittable, or U=U). Condoms prevent transmission of HIV and other sexually transmitted infections. If you inject drugs, use a new syringe every time. If you’re in a relationship with an HIV-negative partner, discuss preexposure prophylaxis (PrEP). Figure Out Your Finances HIV can pose financial challenges. Private health insurance plans, state Medicaid programs and Medicare vary in terms of what they cover and how easy it is to access care. A health insurance plan offered by the Affordable
Care Act or care provided through the Ryan White HIV/AIDS Program may be an option. HIV/AIDS service organizations often have financial navigators, and many drug companies offer payment assistance programs. Improve Your Overall Health An HIV diagnosis can be an opportunity to take steps to improve your overall health. These include eating a balanced diet, getting enough exercise, maintaining a healthy weight and getting adequate sleep. If you smoke, consider quitting. Ask your doctor which tests and vaccines you should receive. Many people living with HIV have other health conditions. Work with your health care team to get appropriate treatment. Take Care of Your Mental Health It’s normal to feel anxiety, sadness or depression after an HIV diagnosis. Exercise, yoga, prayer or meditation can often help relieve stress. Talk to your health care team about mental health resources, including therapists and support groups. While learning about HIV and keeping yourself and your partners healthy, know that you are not alone in this fight. You can survive and thrive with HIV. ■
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EING DIAGNOSED WITH HIV can be shocking and upsetting, but with proper care, you can live a long and healthy life. Living with HIV can come with challenges, but it’s no longer the death sentence it was once perceived to be. Start by working with a health care provider and surrounding yourself with support.
ASK POZ WELLNESS TIPS FROM POZ.COM
WHAT ARE THE RECOMMENDED CANCER SCREENING TESTS? The earlier cancer is detected, the easier it is to treat.
ISTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)
S
EVERAL TYPES OF CANCER can be detected early with regular screenings—and the earlier you catch it, the easier it is to treat. Cancer screening recommendations vary according to individual risk factors, such as age and family history. The U.S. Preventive Services Task Force (USPSTF) recommends mammograms every other year starting at age 50 to screen for breast cancer. Some experts recommend starting mammograms as early as age 40, and people with risk factors may need more frequent screening. The USPSTF recommends cervical cancer screening every three years starting at age 21. Women living with HIV are at greater risk and may be advised to start sooner. Pap tests and human papillomavirus (HPV) tests are both used for screening. There is currently no consensus recommendation for routine anal cancer screening, but some experts advise regular exams for gay and bisexual men with HIV. If detected early, cervical or anal dysplasia (abnormal cells) can be treated before they progress to cancer. In May 2021, the USPSTF lowered its
colorectal cancer screening age from 50 to 45. Colon cancer rates are rising among younger people, especially Black men. Screening approaches include tests that detect blood in the stool and colonoscopy, an examination of the inside of the colon for abnormal growths. Chronic hepatitis B, hepatitis C, fatty liver disease and heavy alcohol use can lead to liver cirrhosis and liver cancer. Screening for liver cancer is not recommended for the general population, but people at increased risk should be screened regularly using blood tests or ultrasound imaging. Lung cancer screening is recommended for current and former heavy smokers. In April 2021, the USPSTF updated its guidelines to recommend annual screening with CT scans for people ages 50 to 80 who have a 20 pack-year history of smoking (the
equivalent of one pack a day for 20 years) and either still smoke or have quit within the past 15 years. Experts disagree about the need for prostate cancer screening. Because it usually grows slowly, most men with prostate cancer will die of other causes. According to the USPSTF, prostatespecific antigen (PSA) blood test screening should be an individual decision based on risk factors and personal preferences. Skin cancer can usually be successfully treated if caught early, but melanoma is more likely to spread and become deadly. Although the USPSTF does not currently recommend routine skin cancer screening for people without symptoms, many experts advise regular self-exams and clinical examination to look for abnormal moles or sores that don’t heal. —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!
poz.com DECEMBER 2021 POZ 19
RESEARCH NOTES BY LIZ HIGHLEYMAN
TREATMENT
CURE
CONCERNS
mRNA Vaccine
Rapid Dovato
Cure Funding
Hep B Vaccine
The International AIDS Vaccine Initiative and Moderna have launched a Phase I study of HIV vaccines that use the same messenger RNA (mRNA) approach as highly effective COVID-19 vaccines. HIV mutates rapidly, which enables the virus to evade common antibodies. But most people have a small number of specialized B cells that can produce broadly neutralizing antibodies (bnAbs), which target hidden parts of the virus that don’t change very much. An approach known as germline targeting aims to train immature B cells in a stepwise fashion to generate bnAbs. In an early study, 97% of people who received an experimental vaccine containing a cluster of engineered HIV envelope proteins produced these rare immune cells—the first step in the pathway for generating bnAbs. The new study will use mRNA technology to speed up the design and production of successive versions of the vaccine to further train B cells. The trial will enroll 56 healthy adults at low risk of acquiring HIV; results are expected in 2023.
A two-drug combination of dolutegravir and lamivudine—the drugs in the Dovato pill—can be a good option for people starting rapid HIV treatment, which leads to faster viral suppression. In the STAT trial, 131 newly diagnosed adults started Dovato in a test-andtreat setting. They were tested for drug resistance, hepatitis B virus (HBV) coinfection and kidney function at study entry and were started on Dovato within 14 days of diagnosis, before these laboratory results were available. Treatment was later modified if needed, which was the case for 10 people. An analysis at 48 weeks showed that 82% of all participants had an undetectable viral load. Most of those without viral suppression had dropped out and had missing data. Looking only at those with complete data, 97% had undetectable HIV. No HBV drug resistance was seen in those found to have coinfection. The researchers concluded that Dovato is feasible and effective in a test-and-treat setting, with therapy adjustments occurring safely via routine clinical care.
HIV cure studies have led to many disappointments, but researchers continue to explore ways to achieve sustained viral remission— and more funding can help. The National Institutes of Health recently awarded approximately $53 million in annual funding over the next five years to organizations that make up the Martin Delaney Collaboratories for HIV Cure Research, upping the total amount by about 75% and expanding the number of institutions from six to 10. The awards will focus on three key areas: basic research on HIV reservoirs and posttreatment control; strategies for delaying viral rebound; and approaches for reducing, eradicating or inactivating latent virus. One of the grants will focus on infants and children. Separately, amfAR, The Foundation for AIDS Research, has awarded nearly $600,000 to three teams exploring cuttingedge gene therapies for HIV cure research. These include engineered natural killer cells (following up on work on CAR-T cell therapy), broadly functional antibodies and CRISPR/Cas9 geneediting technology.
HIV and hepatitis B virus (HBV) are transmitted in similar ways, and coinfection with both viruses is common. People who are living with HIV are more likely to develop chronic hepatitis B and have more complications and a higher mortality rate than those with HBV alone. While guidelines recommend that people living with HIV should be vaccinated against HBV, some do not respond well due to weakened immune function. But new research suggests that upping the dose could help. Researchers compared three shots using a double dose of the Engerix-B HBV vaccine versus a repeated series of three standard doses in 107 HIV-positive adults who didn’t produce enough antibodies after initial vaccination. The high-dose group produced more antibodies than the standard-dose group: 72% had a good serological response, compared with just 51% of those who repeated the standard series. What’s more, after one to two months of followup, antibody levels were more than twice as high in the high-dose group.
20 POZ DECEMBER 2021 poz.com
(HIV VIRUS)THINKSTOCK; ALL OTHERS: ISTOCK
PREVENTION
WHEN IT’S HARD BELLY (EXCESS VISCERAL ABDOMINAL FAT)
IT MAY BE TIME FOR EGRIFTA SV
TM
IF YOU ARE LIVING WITH HIV AND LIPODYSTROPHY ASK YOUR HEALTHCARE PROVIDER ABOUT EGRIFTA SV TM.
FIND A SPECIALIST AT EGRIFTASV.COM
Actual patient living with HIV.
IMPORTANT INFORMATION FOR PATIENTS ABOUT EGRIFTA SV (TESAMORELIN FOR INJECTION) TM
What is EGRIFTA SV (tesamorelin for injection)? • EGRIFTA SV is an injectable prescription medicine used to reduce excess abdominal fat in adult patients living with HIV and lipodystrophy. EGRIFTA SV is a growth hormone-releasing factor (GHRF) analog. • EGRIFTA SV is not for weight loss management. • The long-term safety of EGRIFTA SV on the heart and blood vessels (cardiovascular) is not known. • It is not known whether taking EGRIFTA SV helps improve how well you take your antiretroviral medications. • It is not known if EGRIFTA SV is safe and effective in children, do not use in children. TM
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Before using EGRIFTA SV , tell your healthcare provider if you: • Have or have had cancer. • Have problems with blood sugar or diabetes. • Have scheduled heart or stomach surgery. • Have breathing problems. • Are breastfeeding or plan to breastfeed. • Are taking any other prescription and non-prescription medicines, vitamins, and herbal supplements. TM
EGRIFTA SV may cause serious side effects including: • Increased risk of new cancer in HIV positive patients or your cancer coming back (reactivation). Stop using EGRIFTA SV if any cancer symptoms come back. • Increased levels of your insulin-like growth factor-1 (IGF-1). Your healthcare provider will do blood tests to check your IGF-1 levels while you are taking EGRIFTA SV . • Serious allergic reaction such as rash or hives anywhere over the body or on the skin, swelling of the face or throat, shortness of breath or trouble breathing, fast heartbeat, feeling of faintness or fainting, itching and reddening or flushing of the skin. If you have any of these symptoms, stop using EGRIFTA SV and get emergency medical help right away. TM
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• Swelling or fluid retention. Call your healthcare provider if you have swelling, an increase in joint pain, or pain or numbness in your hands or wrist. • Increase in blood sugar (glucose) or diabetes. • Injection site reactions. Injection site reactions are a common side effect of EGRIFTA SV , but may sometimes be serious. • Increased risk of death in people who have critical illness because of heart or stomach surgery, trauma of serious breathing (respiratory) problems has happened when taking certain growth hormones. TM
The most common side effects of EGRIFTA SV include: • Pain in legs and arms • Muscle pain These are not all of the possible side effects of EGRIFTA SV . For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or to THERA patient support® toll-free at 1-833-23THERA (1-833-238-4372). This information is not intended to replace discussions with your doctor. For additional information about EGRIFTA SV , go to: www.egriftasv.com for the full Prescribing Information, Patient Information and Patient Instructions for Use, and talk to your doctor. For more information about EGRIFTA SV contact THERA patient support® toll-free at 1-833-23THERA (1-833-238-4372). TM
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EGRIFTA SV is a trademark of Theratechnologies Inc. THERA patient support is a registered trademark of Theratechnologies Inc. © 2020 Theratechnologies Inc. All rights reserved. 789-01-04/20 – 7,5x10
PZA522842.pgs 06.05.2020 15:03
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Donja R. Love launched a writing program for people living with HIV.
Visibility Is Survival PLAYWRIGHT, POET AND FILMMAKER DONJA R. LOVE SHARES HIS VISION WITH POZ FOUNDER SEAN STRUB. BY SEAN STRUB • PHOTOGRAPHY BY BILL WADMAN
22 POZ DECEMBER 2021 poz.com
D
ONJA R. LOVE IS AN AFRO-QUEER PLAYWRIGHT, POET AND filmmaker from Philadelphia who is living with HIV. He is the author of the play one in two, about surviving and thriving as a gay Black man with the virus. Trained at The Juilliard School, he is the recipient of the 2021 Terrence McNally Award, 2020 POZ Award for Best Play, 2018 Laurents/Hatcher Foundation Award and the 2017 Princess Grace Playwriting Award. His work has been developed at the Manhattan Theatre Club, the Rising Circle Theater Collective, The Lark and The Playwrights Realm. Love is a cofounder of The Each-Other Project, a digital media platform that celebrates and fosters community through art and activism for Black queer and trans communities. In 2020, he launched a writing program titled Write It Out! (WIO!), specifically for people living with HIV. In 2021, with sponsorship from Billy Porter and GLAAD, he launched the WIO! Prize for playwrights living with HIV.
Why did you write one in two? For me and me alone. I wrote it on the Notes app on my phone in 2018. For background, I publicly shared in 2016 that I’m living with HIV, posting on Facebook and Twitter. Before that, only very close folks knew, like my parents and my husband. I didn’t want to talk about it. But I got to a point where I needed liberation, and to me, that was sharing my status on social media. The time prior to that when I felt like I was in a liberated space was December 13, 2013. That’s when Beyoncé released her self-titled album. All I focused on was her album. I didn’t think about my status on that day. I was just living my life at that time, thanks to Beyoncé. Fast-forward to December 2018. I started to feel depressed again. I knew it was related to my status, even though at that point I had been open about it for two years. I stayed in bed, but I didn’t want to feel that way. I said, What can I do? I told myself, You can write about how you’re feeling right now. So I turned over to my nightstand, grabbed my phone and started writing the play. When I finished it, I said, No one will ever see this. I revealed so much. I wrote about my depression. I wrote about my alcoholism. I wrote about my suicidal thoughts. Now, leave it alone. A few weeks after I finished writing the play, someone reaches out to me asking if I could meet up with a friend of theirs. They said this friend was recently diagnosed with HIV, and they aren’t taking their diagnosis well. They said that this person is drinking excessively, throwing themselves into risky sexual behavior and had become a shell of themselves. I dropped everything I had that evening so I could meet up with this person. We went to a restaurant. I could see the hurt in their eyes. I get emotional just thinking about it. I was the first person he had talked to who was also HIV positive. At that point, I had been living with HIV for 10 years. Sharing where I was in my journey, I could see it gave him so much hope. After we parted ways, as I was walking to the train, I
immediately thought to myself, Do that play on your phone, Donja. That is not just about you. You cannot keep that to yourself. I reached out to my agent when I got home. Only a year passed from when I wrote it to when it was onstage. The play was called one in every, but we landed on the title one in two, which refers to the statistic that one in two gay or bisexual Black men are projected to test HIV positive in their lifetime. When people hear the title and what it stems from, they are shocked. People always ask, without fail, “How did I never know this?” And that is the question. That means, by and large, as a society, we do not care. That’s why you don’t know, and I’m hoping that my work can help shift that. My biggest hope is that one day theaters won’t produce the play because it is so outdated. You are very intentional about who you’re writing for. It reminded me of when David Drake wrote The Night Larry Kramer Kissed Me, and I produced it off-Broadway. There was a concern about pigeonholing it as a gay play or an AIDS play. One night, David and I were sitting at a diner going over all this, and we realized that’s exactly how we wanted it marketed. Great if other people saw it, but we wanted our peers to see it. When I’m working with a theater, the first people I email are from the marketing team. They get the standard salutations, but I make sure to give them the inspiration behind the work, who the work is for, a list of organizations aligned with the community and strategies on how we can best mobilize. The multitude of folks who work in these spaces don’t look like me, don’t look like the characters who I write about, so naturally there is a cultural disconnect, even when folks are informed. For me and so many other writers who look like me, we have to do more than just be writers. As this relates to one in two, I told marketing I wanted people coming to the play and then finding out what it’s about, not first thinking that it’s going to be so sad...
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Avoiding their fear of being diagnosed with HIV while going to see an AIDS play. I didn’t want that. Especially since, to date, one in two is one of my funniest plays. I wanted people to laugh and then go, “Oh, fuck, right.” It made it very challenging to figure out a way to market this play without talking about this thing. The theater struggled at first and came back to me to convince me to market the play as a conversation about HIV. I had to have a conversation with myself. What ended up making me change my mind was I reached out to people, specifically to other Black people living with HIV. Everyone who I asked emphasized how we do not get work that holds space for us in this way. Allowing people to know from the beginning who is being centered and who is a part of the conversation, who has often been left out of the conversation, was important.
Sean Strub (left) with Donja R. Love
“I DIDN’T WANT TO TALK ABOUT IT. SO I WROTE ABOUT IT.”
Are there writers you are inspired by? Someone who means so much to me is Joseph Beam. Him being from Philly, that’s already a connection. He could have just written a memoir, but his anthology In the Life brought the community together. He saw there was a void in queer Black voices. I also find myself constantly thinking about what he says in the introduction for In the Life, which is “Visibility is survival.” It literally is. I also think visibility is community.
Tell us about the Write It Out! program for people living with HIV. It’s one of the greatest joys in my life right now. Like Joseph Beam, who realized that he had resources for community, I realized I was in a similar space. I reached out to organizations such as Broadway Cares/Equity Fights AIDS (BC/EFA), the National Queer Theater, The Lark, Mobilizing Our Brothers Initiative (MOBI). They helped in different capacities. My connection with BC/EFA started through one in two. I met with Tom Viola, BC/EFA’s executive director, to see if they could subsidize tickets, which they did. A few months later, we reached out again to BC/EFA for financial support for Write It Out!, and again it was yes.
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National Queer Theater provides the administrative side of things, from community engagement to the application and selection process, to the actual classes, to the presentation. MOBI works specifically on the engagement process. The Lark has a long list of actors, directors and stage managers, so they came onboard on the rehearsal process and the presentation. Last year, we had 13 writers. One unfortunately had to drop out because of illness, so we had 12 at the end of it. This year, we have 10 writers for a 10-week program. They participate online via Zoom. As far as I can see right now, we’ll remain virtual because of the accessibility. Last year, 10 of the 12 writers were not based in New York. Each writer who participates has their work rehearsed and noticed. It gets presented virtually on World AIDS Day.
I had a lisp as a child and was told not to sound like a girl. Tell us about your stutter as a child and the stigma. And please tell us about your family. That’s a connection I never thought of, but I do remember being embarrassed about my stutter. I knew I was a boy who liked boys, so I had that in my mind. That was one thing I had to keep to myself. And then talking was something else to add to the list of things to be embarrassed by. Both things were out of my control, so how could I navigate this? I didn’t want to be made fun of, so it kept me silent. Now, I’m seeing the thread with HIV, being silent about my status as well. It’s just this overall thread of shame. I didn’t want to talk about it. So I wrote about it. Having a stutter put me on that path without even realizing it. I still stutter when I feel extreme emotion. I just have to give you your flowers because I never put these things together until now. My family had communitarian and engaged values, attended church but not a strong church community. I’m the oldest of four siblings. I have a big family. And when I think about families, I think about aunties, grandmoms and all the individuals who help raise the kids. These are the individuals who are a part of the community and holding so much space. My family was very much a model of that. All I saw was community because it was just every day for me. ■
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Celebrating Black Advocates
We shall overcome, we shall overcome, We shall overcome someday; Oh, deep in my heart, I do believe, We shall overcome someday. —from ”We Shall Overcome”
(LIL NAS X) FACEBOOK/@LILNASX; (CANALS/COX) SHUTTERSTOCK; (MOORE) LYNN LANE; (BROWN) ELEY/@ELEY_PHOTO; (OTHERS) COURTESY OF INDIVIDUALS
T
HE POZ 100 IS BACK! THIS YEAR’S
novel coronav i r us k now n as SARS-CoV-2, the news hardly list celebrates 100 Black advocates—both HIV came as a surprise to people workpositive and HIV negative—who are making a ing in the HIV community or in health. In the United States, difference in the fight against HIV/AIDS. We’re public the HIV epidemic is largely conexcited to spotlight the work these individuals centrated in the South, where a are doing in their communities, across the country and patchwork health care system and limited access to HIV treatment around the globe. Their collective efforts are helping set the and prevention services allow the path toward overcoming the HIV/AIDS epidemic. virus to thrive. Although we have the tools to overcome HIV, barriers such as stigma, structural racism and discrimination stand in The 2021 POZ 100 focuses solely on Black advocates in the the way. United States because, sadly, people of color in our country Fortunately, this year’s POZ 100 honorees are raising are disproportionately affected by HIV. In 2018, Black Ameriawareness of HIV in their communities, encouraging HIV cans represented 13% of the population in the United States, testing and promoting prevention. They are sharing their according to the Centers for Disease Control and Prevention stories of survival to inform and inspire others. They are (CDC), but made up 42% of new HIV diagnoses. Furthermore, advocating for more equitable health care policies in our govBlack men who sleep with men accounted for 26% of those ernment and our institutions. They are tackling HIV-related new HIV infections. Black women are also at greater risk for stigma and empowering those living with HIV. HIV: The rate of new HIV infections among Black women is As always, the POZ 100 list is not meant to be definitive. 13 times that of white women and four times that of Latina But it does represent the range of the amazing work advocates women. Black people in general also have lower viral supare doing to support people living with HIV and prevent others pression rates compared to people living with HIV overall. from contracting the virus. Among the names on our list, Why? Because although viruses do not discriminate, a you’ll find poets, peer advocates, ministers, mental health long history of systemic inequities has given rise to vastly experts, researchers, rappers and many other individuals who different health outcomes for people of color. Last year, when share a passion to end this epidemic. Thanks to the work they the COVID-19 pandemic struck and it became clear that people do every day, we will overcome HIV someday. of color were at greater risk of getting sick and dying of the Left to right, top: Lil Nas X, Steven Canals, Deondre Moore, Billy Porter, Laverne Cox and Timothy DuWhite; middle: Jericho Brown, Jahlove Serrano and Tori Cooper; bottom: Venita Ray
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Celebrating Black Advocates
In 2011, Michelle Anderson made history as the fi rst—and only—woman openly living with HIV to win a national pageant title when she was crowned Ms. Plus America. Today, she’s a policy associate at The Afiya Center, an organization dedicated to the reproductive health of and justice for Black women. Michelle is a policy fellow at the Positive Women’s Network–USA (PWN-USA), an organization that serves women living with HIV. She believes that understanding the impact of racism on Black women is key to improving their access to vital health resources. CARMARION D. ANDERSON-HARVEY Birmingham, Alabama
Carmarion D. Anderson-Harvey is the Alabama state director for Project One America, an effort led by the Human Rights Campaign (HRC) to dramatically expand LGBTQ equality in the South. As such, she’s the fi rst trans person of color to serve in an HRC leadership role. She is also the cochair of Alabama End HIV, the state’s initiative to end the epidemic. Before joining HRC, Carmarion worked in public health and education, managing local and national prevention initiatives focusing on HIV/AIDS and other health disparities. She is the founder and former executive director of the national nonprofit Black Transwomen and serves as the national co-minister and South regional coordinator for the TransSaints ministry of The Fellowship of Affi rming Ministries. She’s a wife, mother and grandmother with a passion for inclusion in the world. CORNELIUS BAKER Washington, DC
Longtime HIV policy expert Cornelius Baker is a special adviser to the Office of AIDS Research and a PEPFAR (President’s Emergency Plan for AIDS Relief) liaison at the National Institutes of Health. A lecturer at the Rollins School of Public Health at Emory University, he also worked in the Office of the Global AIDS Coordinator and Health Diplomacy. At FHI 360 (a family planning and health nonprofit), Cornelius held several roles, including project director of the “Testing Makes Us Stronger” campaign. He was senior adviser at the National Black Gay Men’s Advocacy Coalition and a member of the Presidential Advisory Council on HIV/AIDS (PACHA). Plus, he previously led the Whitman-Walker Clinic and the National Association of People with AIDS (NAPWA). CARL BALONEY JR. Washington, DC
Carl Baloney Jr. is the vice president and chief advocacy officer at AIDS United, where his past experience as a
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legislative aide in the U.S. House of Representatives no doubt helps him organize AIDSWatch, the nation’s largest annual constituent-based HIV advocacy event. Carl also manages the nonprofit’s Racial Justice Index, launched this year in collaboration with the Public Policy Council. The initiative aims to improve the HIV sector’s commitment to racial justice by helping organizations provide competent, equitable care and hire and develop Black and brown leaders. As a Black gay man from the Deep South, Carl sees it as his mission to advance the well-being of marginalized populations, including people facing barriers to health care, education and fi nancial opportunity. LIZZIE BELLAMY Longs, South Carolina
Lizzie Bellamy has been living with HIV for almost 25 years and is the mother of 6 children, 14 grandchildren and 1 great-grandchild. This fabulous and fierce “glam-ma” is also a passionate HIV advocate. She serves as the regional cochair for the South Carolina chapter of PWN-USA and was named PWN’s January 2020 Shero of the Month. Lizzie is a member of the South Carolina HIV Planning Council and serves on the women’s summit committee. She’s the board chair of A Family Affair Living Our Best Life, a support organization for women living with HIV in central South Carolina. She’s grateful for the wonderful sisterhoods that have empowered her to live her best life and strives to uplift and support other women. JARON BENJAMIN New York, New York
Jaron Benjamin is the vice president for community mobilization for Housing Works—a nonprofit fighting the twin crises of HIV and homelessness in NYC—and a cofounder of Birddog Nation, a nationwide effort that helped stop the repeal of the Affordable Care Act in 2017. He formerly coordinated the Act Now, End AIDS coalition, a nationwide partnership dedicated to organizing and assisting states, cities and counties in committing to end the epidemic. Before joining Housing Works, Jaron was executive director at the Met Council on Housing, the oldest tenant organization in the United States, and the HIV/AIDS community organizer at VOCAL-NY, where he coordinated the AIDS Housing Network. TOM BICHANGA Minneapolis, Minnesota
Back in 2010, Tom Bichanga was working part-time handing out condoms and providing information on harm reduction as an HIV prevention navigator for Aliveness Project, a Minneapolis wellness center for people with HIV. He eventually was promoted to director of care and prevention, tasked with overseeing linkage to care, HIV prevention,
(BLANCO) ANDRÉ MIGUEL, AKA LISBOETA ITALIANO; (BROADBENT) JACOB KEPLER; (BONET) KATHY HUTCHINS/SHUTTERSTOCK; (ANDERSON) COURTESY OF ANDERSON
MICHELLE ANDERSON Waxahachie, Texas
education and case management programs. These days, he is the organization’s diversity, equity and inclusion director. A native of Kenya, Tom has become a central and trusted figure in HIV outreach and activism in the Twin Cities. MYKKI BLANCO Hollywood, California
“Fuck stigma and hiding in the dark, this is my real life,” Mykki Blanco wrote on Facebook in 2015. “I’ve toured the world three times, but I’ve been living in the dark. It’s time to actually be as punk as I say I am,” the rapper, performance artist, poet and activist added as they publicly disclosed their HIV status. Since then, Mykki has participated in the 2017 Visual AIDS Day With(out) Art by creating a short video that aligned with the theme of prioritizing Black narratives Clockwise from top left: Mykki Blanco, Hydeia Broadbent, Trinity K. Bonet within the ongoing AIDS epidemic. and Michelle Anderson Also, that year, Mykki was one of five people featured in Epic Voices, an online series created by amfAR, The Foundation for ORISHA BOWERS AIDS Research, that spotlighted influential members of Memphis, Tennessee the LGBTQ and HIV/AIDS community. In 2019, they gave a master lecture at the United States Conference on AIDS Orisha Bowers, PhD, a lifelong community advocate, eduabout the impact of HIV on their art. After spending several cator and leader, is the national conference director for the years abroad, Mykki is now back in the United States living Harm Reduction Coalition. An ordained minister, she their punk life. They released the album Broken Hearts & combines her passion for women’s health, rights and justice Beauty Sleep in June. with research and interdisciplinary studies. She is a former regional director of HepConnect, a five-year, multimilliondollar initiative aimed at curbing hep C infections. Her TRINITY K. BONET two-decade-plus history advocating for folks with HIV in Atlanta, Georgia the mid-South started with her work at the United Way in the 1990s and early 2000s. Since then, she has helped In 2014, drag superstar Trinity K. Bonet, whose real name countless organizations get off the ground, sat on boards is Joshua Jamal Jones, became the second contestant on and helped fund grants. She also runs her own nonprofit, RuPaul’s Drag Race to come out as HIV positive. (Ongina Orixa Healing Arts, Wellness and Spiritual Centre. revealed her status during the show’s fi rst season in 2009.) “I was diagnosed in August 2012, and I have so much to live for,” Trinity said on the show. “I have so many goals HYDEIA BROADBENT and aspirations that I want to conquer in my life, so I’m not Las Vegas, Nevada going to let an obstacle get in the way. I wanted to come on this show, and I wanted to be that voice for people who are Since age 6, when she started speaking publicly about scared to speak out about that.” In 2019, Trinity participated having been born with HIV, Hydeia Broadbent has been on in Slay Stigma, a drag tour across Canada that raised HIV a mission to destigmatize the virus. As a 7-year-old, she awareness and encouraged people to get tested and treated. appeared alongside Magic Johnson on Nickelodeon; at 11, This year, she appeared on the sixth season of RuPaul’s she was discussing her status on The Oprah Winfrey Show; Drag Race All Stars, where she performed a monologue and at 12, she commanded the stage at the Republican about HIV and walked the runway holding a Black Lives National Convention. Aside from occasional breaks to grow Matter sign. up and practice self-care, Hydeia has never stopped sharing
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her story to help others. Today, she’s a motivational speaker and HIV activist whose stated mission is to inform and create dialogue around HIV/AIDS in homes, communities, educational institutions and churches. As the founder of Broadbent Communications, she uses her platform to promote prevention, testing and treatment as acts of self-love and respect for one’s community and spreads hope via her lived experience and her famous smile. GINA BROWN New Orleans, Louisiana
Gina Brown, RSW, is director of strategic partnerships and community engagement at the Southern AIDS Coalition (SAC), where she teams with organizations outside the HIV field to advance SAC’s mission of ending HIV in the South. She also facilitates trainings for people living with HIV to combat stigma, and she participates in policy and planning meetings at the local, state and national level. Formerly, Gina was a coordinator for the New Orleans Ryan White Planning Council, a regional organizer for AIDS United and a medical case manager for the NO/AIDS Task Force. She was diagnosed with HIV in 1994. HAROLD S. BROWN JR. Indianapolis, Indiana
Long-term survivor Harold S. Brown Jr. has always been a fighter. In 1961, he was the valedictorian of the fi rst integrated public school in Indiana. During his varied career in academia and government—including a stint as a professor and community scholar at Indiana University—he dedicated himself to improving the lives of people with cerebral palsy, children with mental health issues and incarcerated people. Harold has been advocating on behalf of people living with HIV/AIDS for decades and has served on numerous client advisory boards and organized countless
community events. Last year, the 75-year-old pulled together a delegation of HIV advocates from Indiana for the virtual 2020 International AIDS conference. JERICHO BROWN Atlanta, Georgia
A surefire way to amplify your advocacy is to win a Pulitzer Prize, as Jericho Brown, PhD, did in 2020 for his poetry collection The Tradition. Touching on Black Lives Matter, racism, and violence against Black bodies, many poems seemed to speak to the nation’s zeitgeist. Then there were poems about same-gender love, sex, rape and HIV—autobiographical details that Jericho, a professor at Emory University and the director of its creative writing program, brings to public discussions. Diagnosed nearly 20 years ago, he kept his HIV a secret until art intervened. “Poems will teach you a certain logic if you read and write them enough,” he told POZ. “And I now know that there is nothing wrong with me.” DANIELLE M. CAMPBELL Los Angeles, California
Danielle M. Campbell, MPH, is a staff research associate at UCLA’s Semel Institute. She’s a public health aficionado, servant leader and clinical and behavioral research specialist. She has served on the community advisory board of the UCLA site of the AIDS Clinical Trials Group, as a commissioner of the LA County Commission on AIDS, as a member of the AIDS Treatment Activists Coalition’s Drug Development Committee and as the secretary of the American Public Health Association’s HIV/AIDS section (as well as many other roles within the association). Danielle is currently working with members from community advisory boards nationwide to help develop an HIV CUREiculum, a suite of tools that provides simple, accessible information on HIV cure research for people in affected communities.
ALL IMAGES: COURTESY OF INDIVIDUALS
From left: Gina Brown, Michael Chancley, Davina Conner and Gracie Cartier
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She advocates for more representation of African-American women in HIV clinical trials. STEVEN CANALS Los Angeles, California
Steven Canals, who grew up in the Bronx and is of AfricanAmerican and Puerto Rican descent, cocreated and executiveproduced the FX television show Pose. The show dealt frankly with the toll of HIV/AIDS within a chosen family amid the ballroom voguing culture of New York City roughly 30 years ago. Earlier this year, Steven told The Wrap: “Obviously our story is rooted in the HIV/AIDS epidemic.... And I would be remiss if I didn’t acknowledge that, we once again are in the midst of a global pandemic that is impacting communities of color at a much higher proportion.” Now that Pose is over, he said, “I want to see whose stories are not being told and then to allow that to inform [my] next project.” GRACIE CARTIER Los Angeles, California
In April, Black actress, model and trans advocate Gracie Cartier publicly disclosed her HIV status in a stirring essay in Newsweek and on the premiere episode of Transcend, on the +LIFE streaming platform, which focuses on honest conversations about issues such as stigma, mental health, wellness and health care disparities. Gracie recounted her diagnosis in 2003 at age 24 and wrote of her long journey out of stigma and shame and into self-love. “Living my life authentically may help those of us who suffer in silence for fear of judgement,” she wrote. A lover of life, Gracie is not only surviving but thriving. MICHAEL CHANCLEY Atlanta, Georgia
Michael Chancley, MSW, was recently hired as the communications manager for PrEP4All and was previously the PrEP (pre-exposure prophylaxis) linkage coordinator at Positive Impact Health Centers in Decatur. He began doing PrEP advocacy in New Orleans, his hometown. In the fall of 2020, he became the lead administrator for the popular PrEP Facts Facebook page created by Damon Jacobs in 2013. “It’s very informative, whether you are on PrEP, want to be on PrEP or are an advocate,” Michael has said of the PrEP Facts page. “There’s lots there about what’s going on in the world of HIV prevention. It’s not for the faint of heart. You get some very personal and explicit anecdotes about people’s sexual behavior and beliefs.” DAVIN CLEMONS Memphis, Tennessee
When Lil Nas X calls out your HIV nonprofit and helps raise funds for it, you must be doing something right. Indeed, his
debut album, Montero, highlighted Memphis-based Relationship Unleashed, which serves the Black LGBTQ community and those with HIV. Founded in 2014 by former police officer Davin Clemons, DMin, and his mother, Gwendolyn (see below!), the nonprofit is one element of the duo’s media empire, which includes the magazine The Unleashed Voice and a radio show. Both are ministers and members of the LGBTQ community. Speaking at this year’s GLAAD Media Awards, Davin asserted, “Our goal is to liberate Black and brown people through education, empowerment and enrichment.” (Read more about Davin’s advocacy in the special Real Health Focus insert in this issue.) GWENDOLYN CLEMONS Nashville, Tennessee
When Gwendolyn Clemons, MBA, lost her beloved transgender sister, Jewel, to AIDS in 1991, she found her calling in HIV advocacy. Three decades later, she’s still hard at work. A lesbian minister, she and her son, Davin (see above!), founded the HIV nonprofit Relationship Unleashed with the mission to “fight inequality through comprehensive educational services for the Black LGBTQ community and people living with HIV/AIDS.” The duo also publish the magazine The Unleashed Voice and produce a radio show. When DaBaby made homophobic and stigmatizing remarks earlier this year, Relationship Unleashed joined 11 other agencies to pen an open letter to the rapper. “We are committed to reaching across the aisle,” Gwendolyn wrote at the time “and helping anyone learn the facts about HIV/AIDS to effect change.” (Read more about Gwendolyn’s advocacy in the special Real Health Focus insert in this issue.) SEAN COLEMAN New York, New York
In February, Sean Coleman opened a 16-unit transitional residence in the Bronx for current and former sex workers over age 25 who are transgender and gender-nonconforming. Incarcerated in his youth, he was nurtured by the city’s Black and brown ballroom scene. In 2009, Sean founded Destination Tomorrow, a Bronx LGBTQ community center that offers HIV testing, PrEP screening, housing case management, support groups and more. He also manages Gilead’s multimillion-dollar TRANScend Community Impact Fund to assist transgender and gender-nonconforming grassroots groups. In July, he was named one of City and State magazine’s Bronx Power 100. DAVINA CONNER Whitney, Nevada
Davina Conner shares her experiences as a survivor of teenage homelessness and partner violence to uplift others. Also known as Pozitively Dee (a nickname she earned while educating communities about HIV on the radio),
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Celebrating Black Advocates
she’s a mother and grandmother who has lived with HIV for 24 years. Having emerged from a place of depression and darkness at the time of her diagnosis, she is now an international speaker and mentor and has won awards for her podcast. Currently, Davina is the creative engagements outreach specialist at the Prevention Access Campaign. DAPHNE COOPER Tallahassee, Florida
As founder of Apple of His Eye Outreach, Daphne Cooper shows just how tenacious and resilient Black women living with HIV can be. This summer, via Zoom, she shared her empowerment seminar titled Beauty for Ashes with The Grace Project, a women’s support group in Dallas. Daphne previously hosted seminars in the Twin Cities, where she sat on the Minnesota HIV Planning Council. She is a member of PWN-USA and attended the Common Threads workshop in Fort Lauderdale, where she received a certificate in storytelling. Daphne has been a volunteer clinical researcher for the National Institutes of Health and has volunteered at Poverello in Fort Lauderdale, putting her energy into its food bank and thrift shop. She is also a certified reiki practitioner. SHIRLENE COOPER Brooklyn, New York
Since her AIDS diagnosis 25 years ago, Shirlene Cooper has dedicated her time and energy to helping people living with HIV in 46 states and 36 countries. Shirlene began her advocacy work as a peer educator in 1998 and went on to spend eight years at VOCAL-NY, where she became the fi rst African-American woman to serve as co–executive director. She’s also worked with Housing Works and served 18 years on New York City’s HIV/AIDS Services Administration Advisory Board. Most recently, Shirlene launched the Women’s Empowerment Art Therapy Workshops from her living room in collaboration with the national nonprofit arts organization Visual AIDS. She empowers women with HIV through art and positive affi rmations and creates a space for open dialogue about living with HIV. “We use art as a tool for healing,” she says. She continues to educate and raise awareness because AIDS is not over! TORI COOPER College Park, Georgia
An LGBTQ rights advocate with more than 30 years of experience, Tori Cooper is the Human Rights Campaign’s director of community engagement for the Transgender Justice Initiative, a role that has her focusing on economic empowerment, capacity-building programs, public safety and the expansion of public education campaigns. This year, the self-described “Lizzo of public health” made history when she was sworn in as the fi rst Black trans woman
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member of the Presidential Advisory Council on HIV/ AIDS (PACHA). In her new role, she intends to prioritize health outcomes for the Black trans community, which is of critical importance, since the rate of HIV among Black trans women is four times that of their white counterparts. Of her appointment to PACHA, Tori says, “There’s a great responsibility that comes along with greater visibility.” RANIYAH COPELAND Los Angeles, California
Before being ousted by the board in August, Raniyah Copeland, MPH, served as CEO of the Black AIDS Institute (BAI), after having worked her way up through various positions at the organization since 2008. As CEO, she secured the organization’s largest funding source to relaunch its African American HIV University in 2021. The training and leadership development initiative is designed to increase knowledge, decrease stigma and strengthen workforce capacity and engagement to address HIV/AIDS in the Black community. Also under her leadership, BAI released “We The People: A Black Strategy to End HIV,” which was driven by community input and has been adopted nationally. She’s also a cofounder and principal of Equity & Impact Solutions, a consultancy providing strategic support to organizations in their efforts to advance racial and gender equity. While it’s unclear what her next move will be, as a newly appointed member of PACHA, she will surely continue to fight for equity in health outcomes for all people living with HIV. LAVERNE COX New York, New York
Laverne Cox—the breakout star of Orange Is the New Black and 2014 Time magazine cover subject—has for years been a consistent voice for people living with HIV and for HIV prevention efforts like PrEP. For World AIDS Day 2019, she teamed up with HIV/AIDS relief efforts Band-Aid and RED, saying of continued transmissions around the world, “It’s insane to me when we can prevent it.” In May, she was among an all-star cast that performed a virtual benefit reading of Larry Kramer’s The Normal Heart as a fundraiser for the ONE Archives Foundation and the Invisible Histories Project. (Read more about Laverne’s advocacy in the special Real Health Focus insert in this issue.) BRANDON “ANDY FEDS” COX SANFORD Henderson, Nevada
Brandon Cox Sanford was born with HIV and lost his mother to AIDS at age 5 in 1998. As an adult, he decided he would use his live stand-up comedy gigs, YouTube and social media platforms to empower, entertain and educate people about HIV/AIDS rather than sit silently and let stigma continue to reign. He performs as Andy Feds—a tribute to a former teacher and a nod to his love of fedoras.
In 2017, he launched the Keeping it Positive movement and raised awareness of HIV through interviews, panel discussions and—of course!—stand-up, partnering with groups and advocates in the United States, Canada, Singapore, Belize, London, Ghana, Uganda and South Africa. Brandon has donated proceeds from sales of his merchandise to the Junior Council at Lurie Children’s Hospital in Chicago and to the Keep a Child Alive organization to help families affected by HIV/AIDS. TARIK DANIELS Austin, Texas
a Tony in 2019 (and a Grammy in 2020) for Hadestown, a role he has returned to play now that Broadway has reopened post–COVID-19. For more than three decades, André has been acting, singing, dancing and advocating while living with HIV. A long-term survivor who lost his partner and mentor of 17 years, Chico Kasinoir, to AIDSrelated causes in 1992, the 75-year-old André teaches us that persistence, tenacity, determination and hardiness are key to surviving and thriving—and that our best roles may lie ahead. Bravo! ALICIA DIGGS Burlington, North Carolina
In 2019, with a mission to help end HIV stigma, Tarik Daniels relaunched his nonprofit What’s in the Mirror?, which raises mental health awareness and provides suicide prevention services to communities of color through art, advocacy and affi rming care. A certified mental health peer specialist, Tarik facilitates a biweekly support group for people living with HIV and collaborates with the Black AIDS Institute (BAI) on a monthly webinar series addressing health inequities in communities of color for those living with HIV. He also mounted the yearly Art Heals festival, which aims to destigmatize mental health and HIV. Plus, he hosts a weekly Black queer lifestyle podcast and is working on a play.
Alicia Diggs works for the University of North Carolina– Chapel Hill Center for AIDS Research as the manager for the office of community engagement. She brings 20 years of experience as an effective HIV/AIDS activist, educator and speaker to the role, and she’s especially vocal on issues pertaining to Black women living with HIV. She’s the North Carolina state lead for PWN-USA and a member of the national community advisory board for the Women’s Interagency HIV Study as well as SisterLove’s 2020 Leading
(DE SHIELDS) WIKIMEDIA/LIA CHANG; (COPELAND) COURTESY OF BAI; (OTHERS) COURTESY OF INDIVIDUALS
TOMMY DENNIS Omaha, Nebraska
As outreach coordinator for the Nebraska AIDS Project (NAP), Tommy Dennis is a shining star blazing trails throughout the state. Only 22 when he learned of his own HIV diagnosis, he shortly thereafter started a support group for other young adults living with HIV and began volunteering at NAP. In 2017, Tommy joined NAP full-time as its outreach coordinator. In that role, he does on-site testing, connects with community partners and focuses on providing resources and education to Black men who have sex with men. He currently serves as the cochair of the HIV Subgroup of the National LGBT HIV Criminal Justice Working Group on behalf of Black and Pink National. He is also a former cochair of the North Omaha Community Care Council’s Youth and Outreach Committee and is a founding member of Kingdom Builders Christian Center, where he sings in the choir. ANDRÉ DE SHIELDS New York, New York
After starring in Broadway shows for nearly 50 years—including the original production of The Wiz in the ’70s!—André De Shields fi nally earned
Clockwise from top left: Alicia Diggs, André De Shields, Raniyah Copeland and Daniel J. Downer
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Women’s Society. She’s also a current member of PACHA. She’s described as a “tenacious and steadfast advocate”— but one who’s always willing to listen. DANIEL J. DOWNER Sanford, Florida
Daniel J. Downer is the executive director of The Bros in Convo Initiative, an Orlando-based community organization that educates and empowers young Black gay, bisexual, queer and same-gender-loving men via comprehensive health education, linkage to prevention for sexually transmitted infections (STIs) and peer support. He’s an associate facilitator with The Equality Institute, which provides comprehensive solutions to organizations seeking to infuse diversity and inclusion into their strategy, enhancing outcomes for everyone. Daniel is also an associate facilitator for Mississippi Safe Schools Coalition’s Be the Change Institute, which prepares educators to implement strategies that create and promote safe and inclusive learning environments for LGBTQ students. He’s on the board of directors of RAHMA, a Black Muslim–led organization addressing HIV/AIDS in faith communities through education, advocacy and empowerment and on the grant committee of Contigo Fund, a philanthropic effort to support grassroots causes concerning people of color and LGBTQ people. TIMOTHY DUWHITE Brooklyn, New York
Timothy DuWhite is an NYC-based Black/queer poet, actor and activist who writes authentically about HIV, statesanctioned violence, racism and queerness. His powerful essays and poetry have been published in The Rumpus, The Root, Afropunk, Black Youth Project, The Grio and elsewhere. In the summer of 2018, as the headliner for Dixon Place’s annual Hot Festival, Timothy debuted his one-man show NEPTUNE; he revived the show last summer in Provincetown, Massachusetts. He’s a 2020–2021 Brooklyn Academy of Music resident artist, the senior editor at RaceBaitr.com and program director at NY Writers Coalition. Journalist Mathew Rodriguez once wrote, “Few writers can take concepts as intangible and ephemeral as structural racism and HIV stigma and make them accessible, but DuWhite does it.” KENYON FARROW Cleveland Heights, Ohio
Kenyon Farrow is a writer, editor and strategist whose work has long focused on public health and infectious disease with a focus on racial, gender and economic justice. He recently became the managing director of advocacy and organizing for PrEP4All, which fights to ensure that everyone can access the HIV care they need, including
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PrEP. Previously, he was co–executive director of Partners for Dignity & Rights, senior editor of TheBody.com and TheBodyPro.com and the U.S. and global health policy director for the Treatment Action Group (TAG). He has also worked for POZ and AIDSmeds. Kenyon serves on the board of Global Black Gay Men Connect, the LGBT Center of Greater Cleveland and the New York Transgender Advocacy Group. He is also a prolific essayist and author and coeditor of the book Letters From Young Activists: Today’s Rebels Speak Out. JEFFREY FELIZ-YBES New York, New York
Jeffrey Feliz-Ybes works as an HIV trauma-informed–care peer counselor at Montefiore Medical Center in the Bronx and at Housing Works Community Healthcare in Brooklyn. A retired adult entertainer whose professional name is Leo Donato, he was diagnosed with HIV in 2010 and decided to come out publicly with his status despite objections from his family—they’re now very supportive. Jeffrey was also a spokesperson for “HIV Stops With Me,” an awareness campaign produced by the Centers for Disease Control and Prevention (CDC). He uses his social media platforms to educate people about HIV/AIDS while trying to reduce the stigma around it. JASMINE CHRISTINE FORD Fredericksburg, Virginia
Jasmine Christine Ford’s life is an open book—specifically, a hopeful memoir titled Flight of the Beautiful Lie, which she penned during the COVID-19 shutdowns. She’s a sexual assault survivor, and for 30 years, she earned money doing sex work—partly to pay for an addiction to plastic surgery due to body dysmorphia. Today, Jasmine channels her experiences into HIV advocacy, working with the Virginia Department of Health to ensure that vulnerable populations living with HIV—including people recently released from jail—have access to meds and services. Previously, she was a medical case manager at what is now known as Fredericksburg Area Health and Support Services. A devout Christian and a nurse, she’s continuing her beautiful transformation by earning a master’s degree in public health. OLIVIA G. FORD New Orleans, Louisiana
A longtime trusted name in the world of HIV publications, Olivia G. Ford has created HIV-, health- and justice-related content for TheBody.com, Positively Aware, the Women’s HIV Program at UC San Francisco and The Well Project— and POZ! She formerly served as the communications director for Positive Women’s Network–USA and as executive editor and community manager of TheBody.com. These days, she’s the editorial director of The Well Project.
She’s also on the steering committee of HIV Racial Justice Now, a national coalition of activists of color and allies advancing a racial justice and human rights agenda for the HIV movement. A trained doula and Brooklyn native, she currently lives with her wife and child in New Orleans. BAMBI GADDIST Columbia, South Carolina
In 1994, Bambi Gaddist, DrPH—affectionately referred to as Dr. Bambi for her doctorate in public health—launched the African-American HIV/AIDS Council from her home. Over the years, the organization deployed mobile units to test rural populations, launched programs to reach people of faith and expanded the operating hours of its sexually transmitted infection clinic to include weekends and nights to help stop HIV in the South. Sadly, the organization, which changed its name to the South Carolina HIV Council in 2004 and the Wright Wellness Center in 2019, ceased operation this fall. But Bambi says she’s not retiring from the work and continues to serve as board secretary of the Southern AIDS Council. We can’t wait to see what the long-term HIV advocate will tackle next. MARY GLENN Jacksonville, Florida
Since testing positive in 1990, Mary has been an advocate and voice for the HIV community. She was one of Jacksonville’s fi rst peer navigators and has held many volunteer positions, including at Jacksonville’s own Positive Healthcare; she has also served on the Ryan White Planning Council. A cancer survivor as well, Mary participated in Pfizer’s COVID-19 vaccine trial and shared her story with the local news for this year’s National Black HIV/AIDS Awareness Day. Mary feels education is key to HIV prevention. In an interview with Jacksonville.com, she said Black women need to “learn more about the disease and its causes—and make sure they and their partners get tested for HIV/ AIDS and STDs [sexually transmitted diseases], even if there are no present symptoms.”
ALL IMAGES: COURTESY OF INDIVIDUALS
ANGELA F. HAWKINS Houston, Texas
When Angela F. Hawkins realized none of the organizations in her area for women with HIV were led by women living with HIV, she helped create the Greater Houston Area (GHA) chapter of PWN-USA in 2016. She also helped form the Texas state chapter of PWN, teaming up the GHA and Dallas chapters. Angela is also the coordinator of the group’s Texas Strike Force, which mobilizes individuals and organizations to take action on behalf of marginalized communities in an attempt to change the face of politics in Texas. She is passionate about her work and has spearheaded various HIV-related events and advocacy trainings for women. She’s most proud of facilitating a local support group for women living with HIV, creating a space where they can just be themselves while in a safe and secure environment. Working hard to ensure that people are equipped with accurate information, Angela provides resources for various needs to help folks become the change they want to see.
From top: Kenyon Farrow, Jasmine Christine Ford, Jeffrey Feliz-Ybes and Olivia G. Ford
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“Politics are in my blood,” announces Ernest Hopkins in his Twitter profi le, adding that he’s an “HIV and LGBT national strategist and advocate who loves a good debate and victory.” In 1991, he cofounded the fi rst Black Gay and Lesbian Pride Day; six years later, he helped launch the Minority HIV/AIDS Initiative. Currently, he’s the senior strategist and adviser at the San Francisco AIDS Foundation, where he has led federal policy and legislative actions since 1997, securing funds and promoting health and wellness. His testimony before Congress and his championing of causes like Ryan White programs and clinical trials for HIV meds earned him the Congressional Black Caucus’s National Leadership Award. ACHIM HOWARD New Orleans, Louisiana
Achim Howard heads the group Transmen Rising, which he founded to provide trans men with a safe space to talk about HIV and other issues. In 2017, while attending the United States Conference on AIDS, he and four other trans people stormed the plenary stage to protest what they perceived as an erasure of trans people living with HIV from research data. Achim was the fi rst trans person to minister at the Bethel Christian Church of Washington, DC, and the fi rst trans member of the Operative Plasterers & Cement Masons Local Union 891. He’s currently a minister of The City Church in Charlotte, North Carolina. Achim serves on
the national advisory board of Positively Trans and is the volunteer coordinator for the LGBT Community Center in New Orleans and an Undetectable Equals Untransmittable (U=U) ambassador for the Prevention Access Campaign. TIMOTHY JACKSON Chicago, Illinois
In the North and the South, Timothy Jackson has made a meaningful difference in the lives of Americans living with HIV. He currently serves as the director of government relations for AIDS Foundation Chicago. In an extraordinary feat, he worked to advance 10 legislative priorities in the recent session of the Illinois General Assembly, all of which passed and became law, including one decriminalizing HIV transmission. Timothy currently cochairs the Illinois Harm Reduction and Recovery Coalition. Previously, he was based in the South and helped transform Thrive Alabama, a small AIDS service organization, into a fully funded federally qualified health center with four clinics. ABRAHAM JOHNSON Durham, North Carolina
Abraham Johnson is a public health educator and HIV/ AIDS advocate whose experience in the community health arena spans eight years. He’s currently the HIV community engagement officer for the Treatment Action Group (TAG). Before joining TAG, Abraham worked at FHI 360 as the community programs associate for the HIV Prevention Trials Network, International Maternal Pediatric Adolescent AIDS Clinical Trials Network and the Microbicides Trials Network. He was also an ambassador for the “Greater Than AIDS” campaign. “HIV didn’t stop me,” Abraham has said. “It gave me more power to live and also help other people living with HIV to persevere.” DEIRDRE JOHNSON Petersburg, Virginia
Deirdre Johnson is the founder of the HIV consulting group Deirdre Speaks. She’s also the organizing assistant for PWN-USA. Along with Cedric Pulliam, PhD, she cofounded ECHO VA (Ending Criminalization of HIV and Overincarceration in Virginia), a coalition that—in partnership with PWN-USA, the Sero Project, Equality Virginia and bill cosponsors Senator Jennifer McClellan and Senator Mamie Locke—secured passage of SB 1138, a bill that modernized outdated and ineffective Clockwise from top left: Achim Howard, Timothy Jackson, Deirdre Johnson and Kamaria Laffrey
(HOWARD) JONATHAN TIMMES; (JOHNSON) CLICKS BY COURTNEY; (OTHERS) COURTESY OF INDIVIDUALS
ERNEST HOPKINS San Francisco, California
1980s-era laws that criminalized Virginians living with HIV. When Deirdre spoke before Virginia lawmakers in support of the reform, she stressed that it should benefit all folks with HIV regardless of whether they were undetectable. “Amending our current code to explicitly include language on detectable and transmittable may align science with law,” she said, “but it proves problematic for the most marginalized populations in Virginia. That is not equal nor fair.” Her voice was heard—the new law did not include such specifying language.
He speaks internationally as an ambassador and founding steering committee member of the Undetectable Equals Untransmittable (U=U) campaign. Bryan is also a cofounder of the Free Nushawn Coalition, a group of activists fighting for the release of NuShawn Williams, who was sentenced to excessive prison time under existing HIV criminalization laws.
GEORGE M. JOHNSON Newark, New Jersey
Active in the HIV community for more than 30 years, David “Jax” Kelly is currently the president of Let’s Kick ASS AIDS Survivor Syndrome–Palm Springs and the treasurer of The Reunion Project. He was recently appointed to the Equity in Aging Advisory Committee of the California Department of Aging, and he sits on a community advisory board for the California Department of Public Health’s Office of AIDS. He’s part of the AIDS Clinical Trials Group and HIV 50+ Strong and Healthy, a program of NMAC (formerly the National Minority AIDS Council). Jax is a tireless advocate and a frequent conference speaker on HIV and aging, the history of AIDS, HIV prevention and care and HIV-related issues for people of color. The Yale alum is a self-described “gym rat” and won Mr. Palm Springs Leather 2018.
Journalist, author and activist George M. Johnson wrote the memoir-manifesto All Boys Aren’t Blue, which was both an Amazon and a People magazine Best Book of the Year and was optioned for TV by Gabrielle Union, as well as the follow-up memoir We Are Not Broken. “It’s not lost on me the importance of me being publicly HIV positive as a public figure,” they have tweeted. “I choose to live publicly so you know you are not alone. To combat stigma & shame.” They have also written on race, gender, sex and culture for Essence, The Advocate, BuzzFeed News, Teen Vogue and many other publications. PATSY JOHNSON Ridgeland, Mississippi
A founder of the Mississippi Positive Network, Patsy Johnson served as the group’s chief organizer for a decade, during which she connected with more than 200 people living with HIV across the state. She served as state lead for the national 2020 AIDSWatch and helps lead an event staff of 12 people living with HIV to produce the annual Mississippi AIDSWatch. Patsy also organizes and facilitates support groups with My Brother’s Keeper. In the early days of the COVID-19 pandemic, Patsy conducted safety checks on more than 100 people living with HIV and delivered essentials to their homes. BRYAN C. JONES Lakewood, Ohio
Veteran AIDS activist Bryan C. Jones became a key figure in Ohio in the fight against HIV criminalization after attending a session by the Center for HIV Law and Policy at the United States Conference on AIDS. For more than 10 years, he’s helped mobilize Ohioans; he also helped create the Ohio Health Modernization Movement. Diagnosed with HIV in the ’80s, Bryan rolls up his sleeves to directly help others living with the virus. He founded a popular Cleveland dinner support group for men with HIV and developed his own brand of outreach and prevention called DIRT (Direct, Inspiring, Teachable, Reachable), which focuses on local gathering spots to engage communities.
DAVID “JAX” KELLY Palm Springs, California
KAMARIA LAFFREY Winter Haven, Florida
Kamaria Laffrey is the program director for the Sero Project, an organization dedicated to ending HIV criminalization, racism and social injustice. She has been living with HIV since 2003 and courageously shares her story to help educate others, debunk HIV myths and fight HIV-related stigma and shame. Her compassion for others is one of her greatest attributes. She works with the Florida HIV Justice Coalition, the Florida Community HIV Advisory Group and United We Rise, which mobilizes for the health and liberation of Black people. Kamaria is a founding advisory board member of the Prevention Access Campaign and a member of PWN-USA. She’s happy to use her voice to make others feel less alone. MAVEN LEE St. Louis, Missouri
Maven Lee knows how to have fun while empowering people. As an openly queer, two-spirit person of color living with HIV, he uses his music, dancing and status as a legend in St. Louis’s ballroom scene to destigmatize HIV and help others love themselves. His charisma and honesty landed him on the second season of The Kiki Show (you can watch it on Vimeo for free!). Maven began his advocacy work as a sexual health educator for local schools—prior to his own diagnosis—and later became an HIV educator and
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prevention specialist. This savvy multitalented entertainer and entrepreneur regularly advises nonprofits on how to create support groups for cultivating mental wellness among LGBTQ youth and people living with HIV. (Read more about Maven’s advocacy in the special Real Health Focus insert in this issue.) RAE LEWIS THORNTON Chicago, Illinois
Rae Lewis Thornton is an Emmy-winning AIDS activist, author, blogger and jewelry designer who has been living with HIV for 36 years and with AIDS for 26. She lectures worldwide, challenging stereotypes and myths regarding the virus. She shared her story and disclosed her status on the cover of Essence magazine in 1994. An ordained minister, she has been featured in numerous publications and TV news shows. “There is still an enormous amount of stigma around this disease,” she said last year. “We’ve come a long way, but we still have so much further to go.” Her latest book, Unprotected: A Memoir, is out in December 2021. LIL NAS X Sherman Oaks, California
Sexual shame and religious persecution often lead to low self-esteem and high-risk behaviors. These destructive traits, coupled with socioeconomic factors, fuel HIV rates among same-gender-loving Black men—it’s estimated that half of them will contract HIV in their lifetime. So when Lil Nas X slayed those homophobic demons in his hit video for “Montero (Call Me By Your Name)” by giving Satan a lethal lap dance, we applauded his unapologetic sex-positive message (we also love his clever clapbacks to haters). Then when his debut album, Montero, helped raise funds for HIV causes in the South, the epicenter of today’s epidemic, the openly gay rapper had us shouting, to borrow from his recent hit, “That’s what we want!” TIYE LINK Nashville, Tennessee
Despite the challenges of the COVID-19 pandemic, Tiye Link, EdD, MD, MBA, did not miss a beat. As the program director of Nashville CARES’s Healthy University, a drop-in center for people with HIV, she collaborates with Nashville partners to offer a full calendar of meetings and events. Tiye has been involved in community ministry for more than 40 years. She is the founder and CEO of the consulting company Faith Connections and is a minister at the Nashville Church of the Messiah. She serves on the scientific review committee for the Vanderbilt Institute for Clinical and Translational Research and the End the Epidemic equity and leadership work group committee and formerly served on the steering committee of the Southeast AIDS and Education Training Center.
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DONJA R. LOVE Jersey City, New Jersey
Donja R. Love is an openly HIV-positive Afro-queer playwright, poet and fi lmmaker from Philadelphia. He is the author of the play one in two, about surviving and thriving as a gay Black man living with HIV. Trained at The Juilliard School, he is the recipient of the 2021 Terrence McNally Award, the 2020 POZ Award for Best Play, the 2018 Laurents/ Hatcher Foundation Award and the 2017 Princess Grace Playwriting Award. His work has been developed at the Manhattan Theatre Club, Rising Circle Theater Collective, The Lark and The Playwrights Realm. Donja is the cofounder of The Each-Other Project, a digital media platform that celebrates and fosters community through art and activism for Black queer and trans communities. In 2020, he launched the writing program Write It Out! (WIO!), specifically for people living with HIV; in 2021, with sponsorship from Billy Porter and GLAAD, he launched the WIO! Prize for playwrights living with HIV. (Read an interview with Donja and POZ founder Sean Strub on page 22.) DERRICK MAPP San Francisco, California
Derrick Mapp is the senior services care navigator/counselor at San Francisco’s Shanti Project, which is known for bringing people together in deeper connections to reduce isolation and improve their quality of life. He provides individual and group counseling and coordinates group activities for folks living with HIV. A longtime HIV and cancer advocate, Derrick is a member of the San Francisco HIV Community Planning Council and is involved with the HIV Vaccine Trials Network, the AIDS Clinical Trials Group, the National Cancer Institute’s AIDS Malignancy Consortium and the ANCHOR Study (which explored links between HIV, human papillomavirus and anal cancer). He works toward ensuring better engagement, mutual value and representation of diverse communities in research. DARRELL MCBRIDE Danville, Pennsylvania
As an infectious disease specialist at Geisinger Medical Center, Darrell McBride, DO, has worked tirelessly to support people living with HIV. In his brief time at Geisinger, he has helped start a PrEP clinic, launched a Biktarvy sample program to ensure rapid treatment initiation among patients and helped expand services in his rural community, including hiring dedicated HIV case managers to help patients navigate the health care system. He volunteers as a member of the board of directors of AIDS Resource, the local AIDS service organization, and is the Black outreach and leadership development cochair at Geisinger. In 2016, he was the John Cochran Veteran Affairs HIV fellow in St.
Louis. He is currently a member of the Infectious Disease Society of America, the HIV Medical Association and the International AIDS Society.
JESSE MILAN JR. Ellicott City, Maryland
SHADAWN MCCANTS Houston, Texas
Shadawn McCants, LPC-S, was named Shero of the Month earlier this year by PWN-USA for her efforts in boosting voter turnout in the 2020 election on behalf of Vote Positive USA. A licensed counselor, she was diagnosed with HIV during her senior year of high school and kick-started her HIV advocacy with the creation of the nonprofit 2 Know Is 2 Live, an organization that empowers Black women and girls to get tested for HIV. Since then, the Cincinnati native has become an active member of H-Town Power, the Houston chapter of PWN-Texas. She’s the cochair of the Texas Black Women’s Health Initiative and an ambassador for the CDC’s “Let’s Stop HIV Together” campaign. GERALD MCNAIR Columbia, South Carolina
was named cochair of the Presidential Advisory Council on HIV/AIDS (PACHA).
Jesse Milan Jr., JD began his tireless fight as an HIV advocate over 30 years ago. He’s currently the president and CEO of the Washington, DC–based nonprofit AIDS United, which aims to end the HIV epidemic through policy, advocacy, strategic grant making and capacity building. He also spearheads AIDSWatch, an annual event that gathers advocates in Washington, DC, to lobby Congress and the White House to support HIV funding policies and services. Jesse is a former board member of the Black AIDS Institute and currently serves on the board of AVAC (the AIDS Vaccine Advocacy Coalition). He’s on the scientific advisory board for the President’s Emergency Plan for AIDS Relief (PEPFAR) and on the infectious disease board of the American Board of Internal Medicine. He has given hundreds of presentations, workshops and sermons on HIV/AIDS and has spoken about the disease to millions on television and radio.
Gerald McNair is a driven community activist and longtime volunteer for numerous organizations in South Carolina who has been living with HIV for 28 years. He’s on the board of Palmetto AIDS Life Support Services, the Harriet Hancock LGBT Center and the South Carolina Men of Color Health Alliance. He is also a member of South Carolina’s Ending the HIV Epidemic executive committee and the HIV Planning Council. Gerald was named as Thera’s Community Champion in May for his efforts to promote healthy outcomes in his community. He was also recently selected as an inaugural cohort member of the Southern Black Policy and Advocacy Network’s 2021 LEVEL UP Leadership Development and Capacity Building Initiative.
(MCNEESE) HIV.GOV; (OTHERS) COURTESY OF INDIVIDUALS
MARLENE MCNEESE Houston, Texas
A longtime veteran of the Houston Health Department, Marlene McNeese has held various public health positions, including chief of the Bureau of HIV/STD and Viral Hepatitis Prevention; she most recently served as the department’s deputy assistant director. For more than 25 years, Marlene has played a leadership role in redefi ning public health and community-based support systems that address HIV prevention, chemical dependency, mental health and postincarceration syndrome. She is a former board chair of the National Alliance of State and Territorial AIDS Directors (NASTAD) and this year
Clockwise from top left: Rae Lewis Thornton, Marlene McNeese, Tiye Link and Jesse Milan Jr.
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ASHA MOLOCK Philadelphia, Pennsylvania
Twenty years ago, Asha Molock, a former schoolteacher, was diagnosed with HIV. She educated herself about the virus while keeping her status a secret. That is, until one day, she conquered her internalized stigma and wrote her first book, Gaining Strength From Weakness: 101 Positive Thoughts for HIV Positive People, based on the affirmations she used to write on Post-it notes to keep her spirits up. She followed that up with her memoir, The Underground Woman: From Prisoner to Freedom, detailing her journey from a middle-aged woman hiding her status to a vocal public advocate. These days, when she’s not busy putting the finishing touches on her documentary film, Fuel for the Fire: HIV Stigma in the Black Community, she serves as a member of PWN-USA and on the community advisory board of Bebashi: Transition to Hope, an AIDS service organization in Philadelphia. DEONDRE B. MOORE Dallas, Texas
Deondre B. Moore is a human rights activist who dedicates his time and resources to educating people all over the world about HIV and civil rights issues. He began his work in public health and advocacy after receiving an HIV diagnosis in 2014 at age 19. Since then, he has served on various national community advisory boards and as a community mobilizer in Texas. He is a pharmaceutical community engagement consultant. Deondre currently works as the U.S. partnerships and community engagement manager for the Prevention Access Campaign and appeared on the April/ May cover of POZ this year. LEO MOORE Los Angeles, California
As the medical director for clinic services at the Los Angeles County Department of Public Health, Leo Moore, MD, MSPHM, oversees eight public health centers specializing in HIV prevention, sexually transmitted infections, tuberculosis and refugee health. As a same-gender-loving Black man, Leo is concerned with stemming the spread of HIV among Black gay and bisexual men, who, according to the CDC, have a one in two risk of contracting HIV in their lifetime. In addition to connecting people with HIV to care, Leo educates medical providers about PrEP and has worked with the “Get PrEP LA” campaign to better market the preventive drug to those most at risk. This year, he took his extensive local experience national when he was sworn in as a member of PACHA. ABDUL-ALIY MUHAMMAD Philadelphia, Pennsylvania
Abdul-Aliy Muhammad, a Muslim journalist, poet and activist who has been living with HIV since 2008, writes
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about HIV and racial health disparities for The Philadelphia Inquirer and TheBody.com, among other news outlets. They are a cofounder of the Black and Brown Workers Coop, a workers’ rights group that has organized around gentrification and disrupting white supremacy in LGBTQ spaces. They have worked as an HIV prevention counselor and program coordinator and have also done research-based work. They once refused to take their HIV meds in order to pressure the CEO and medical director of Philly’s LGBTQserving Mazzoni Center to step down amid sexual misconduct allegations. TERRY W. MUNN Durham, North Carolina
Terry Munn, MSM, is the CEO and cofounder of Triangle Empowerment Center (TEC), which provides an array of events and services to Durham’s LGBTQ community— including HIV education and outreach and empowerment programs for people living with HIV—making it an essential hub for men of color who have sex with men (MSM). In collaboration with other organizations, TEC created the fi rst minority MSM-based PrEP linkage to care program, which has become instrumental in helping men of color in the Durham area learn about and get on PrEP. TEC was also a driving force behind North Carolina’s fi rst LGBTQ emergency/transitional housing program. CHIOMA NNAJI Boston, Massachusetts
As senior program director of the Multicultural AIDS Coalition, Chioma Nnaji is responsible for community-led research, capacity building, technical assistance and community mobilization. She’s been working at the intersection of HIV, racial justice and immigrant rights for more than 20 years. She founded and currently directs the fi rst statefunded program in Massachusetts that provides culturally and linguistically appropriate HIV outreach, education, testing and linkage to care services to Black immigrants. She is #unbought #unbossed and #unapologetic in her passion to bring the voice and needs of African diaspora communities to the table. TAKEISHA NUNEZ Louisville, Kentucky
As the senior health education coordinator overseeing HIV and syringe exchange expansion through the University of Kentucky Harm Reduction Team, Takeisha Nunez is in charge of the only syringe exchange in Kentucky that’s open six days a week; she also oversees the downtown hub and seven satellite locations. In five years, the program has distributed more than 5 million syringes and served more than 20,000 injection drug users. Her team also provides HIV and hepatitis C testing and has found innovative ways
From left: Takeisha Nunez, Leo Moore and Abdul-Aliy Muhammad
to continue testing and linking HIV-positive individuals to care during the COVID-19 pandemic. Takeisha previously worked on the Louisville HIV Prevention Team, which aims to stem the tide of HIV transmission among drug users. She serves on the board of Emmaus Ministries, Kentucky Health Justice Network and Kentucky AIDS Alliance and is a proud member of the Zeta Phi Beta sorority. She is trained in harm reduction, HIV counseling and testing, partner services and field investigation.
(NUNEZ) COURTESY OF NUNEZ; (MOORE) HIV.GOV; (MUHAMMAD) LOUIE ORITZ-FONSECA
BRIDGETTE PICOU Cathedral City, California
Bridgette Picou is a licensed nurse and a prolific, hilarious and insightful writer who doesn’t hold back on what it’s like to be a woman living with HIV. She contributes to the A Girl Like Me blog for The Well Project, where she’s also a member of the community advisory board. She also writes a regular column titled “Being Bridgette” for Positively Aware and provides the activist’s perspective in the magazine’s annual HIV drug guide. Plus, she serves as board secretary for the HIV+ Aging Research Project–Palm Springs, which studies the impacts of long-term HIV and treatment on the natural aging process. In advocating for others, Bridgette fi nds she advocates for herself and affi rms her own journey. HAROLD PHILLIPS Washington, DC
Appointed in June by the White House to head the Office of National AIDS Policy, Harold Phillips is an openly gay Black man who has been living with HIV since 2005. He most recently served as the senior HIV adviser and chief operating officer of the Ending the HIV Epidemic initiative in the Office of Infectious Disease and HIV/AIDS Policy at the Department of Health and Human Services. His work in the field of HIV/AIDS spans more than 20 years. Harold previously worked at NMAC. He also served on the Centers for Disease Control and Prevention/Health Resources and Services Administration Advisory Committee on HIV, Viral Hepatitis and STD Prevention and Treatment from 2003 to 2010. (Read our Q&A with Harold on page 4.)
BILLY PORTER Bellport, New York
In May, Billy Porter, longtime Broadway mainstay, HIV advocate and star of the TV series Pose, broke his 14-year silence on his HIV diagnosis, telling The Hollywood Reporter: “I’m living so that I can tell the story. There’s a whole generation that was here, and I stand on their shoulders. I can be who I am in this space, at this time, because of the legacy that they left for me. So it’s time to put my big boy pants on and talk.” After his disclosure, he released his own version of the 1990s house hit “Caught in the Middle” as a fundraiser for marginalized communities impacted by HIV. Billy shares his story of survival in Unprotected: A Memoir, which came out in October. We look forward to his next chapter. POSITIVELY POSITIVE Seattle, Washington
Positively Positive, the founder of Positively Positive Education Productions, is a Black, queer, transgender, grey asexual, grey aromantic artist who has been living with HIV since birth and is a survivor of childhood violence. They write and perform spoken-word poetry and hip-hop and create workshops about living with HIV. For the past 25 years, they have facilitated programs and activities for children, youth and adults as a summer camp counselor and educator and as an advocate. They have also cofacilitated workshops on poetry, performance techniques and hip-hop for communities around the world. They aim to challenge institutions to build bridges for justice. CEDRIC PULLIAM Atlanta, Georgia
As senior adviser for the chief medical officer at the Department of Health and Human Services and a former adviser at the CDC, Cedric Pulliam, PhD, ABPP, has 12 years of experience working in global health (HIV/AIDS, TB, malaria), global LGBTQ and human rights policy, public policy and public health. Recently, he completed his PhD in health and medical psychology, with a focus on the use of PrEP in young men of color who have sex with
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men—he’s been taking PrEP himself since 2014. He also cofounded ECHO-VA with Deirdre Johnson, which modernized outdated and ineffective 1980s-era laws that criminalized HIV in Virginia. VENITA RAY Houston, Texas
Venita Ray, JD, is the co–executive director of PWN-USA and has more than 20 years of experience advocating for underserved communities on issues such as affordable housing, environmental justice, health care and HIV. She previously served on PWN-USA’s board. Before PWNUSA, Venita was the public policy manager for Legacy Community Health in Houston, where she monitored HIVrelated health policy and managed an advocacy training program for people living with HIV. In 2016, she led a citywide effort to end the HIV epidemic in Houston. She appeared on the POZ cover for the 2017 POZ 100, which celebrated women. JAY REED San Diego, California
As a peer case manager at Christie’s Place, where she has worked since 2010, Jay Reed is an amazing mentor and community advocate who has helped countless San Diego– area women living with HIV fi nd their self-worth and confidence. She works daily to help women living with HIV overcome barriers that prevent them from accessing and retaining medical care. She spearheaded a special support group for women with HIV over age 50. Jay is a member of the San Diego HIV Planning Group, and is the chair of the Faith-Based Action Committee of San Diego, of which she’s been a member since 2012. Through PWN, she provided feedback on the National HIV/AIDS Strategy to the federal government. In 2018, she won the Brad Truax Award, given annually in recognition of outstanding contributions in the struggle against HIV/AIDS in the San Diego area. LEPENA REID Tampa, Florida
Lepena Reid was helping people living with HIV even before her own diagnosis in 1988. She’s a vibrant and vocal advocate for people aging with HIV who are living with comorbidities. She also speaks out in support of women living with HIV, women’s reproductive rights and survivors of intimate partner violence. Lepena has advocated to get Clockwise from top left: Lepena Reid, Curtis Smith, Monica Lee Ridgeway and Bré Rivera
42 POZ DECEMBER 2021 poz.com
more women of color involved in clinical trials and research. She’s a spokesperson for PWN-USA and was included in the 2018 POZ 100. For the past five years, she helped facilitate a national virtual support group for Black women living with HIV. As a member of Common Threads, a crafting collective of women with HIV, Lepena creates red ribbon earrings and other jewelry to raise HIV awareness and support. MONICA LEE RIDGEWAY Frankfort, Kentucky
Monica Lee Ridgeway is the program manager, writer and creator of the innovative pilot program Kentucky Finding Cases Project. The program supports the national Ending the Epidemic plan by increasing HIV testing in rural areas considered hard to reach, increasing access to care to boost viral suppression rates among people living with HIV, addressing health inequities and raising awareness of PrEP. Monica is an advisory board member of the 2021–2023 Emory COMPASS Coordinating Center, where she works to address the HIV epidemic in the South. She was appointed as the 2020–2021 state representative for HIV advocacy focused on ending the epidemic. She also volunteers for the Life Development Corporation, a grassroots organization that empowers people through educational and economic growth. BRÉ RIVERA Albuquerque, New Mexico
As a Black trans woman living with HIV, Bré Rivera is passionate about helping to fund organizations spearheaded
by Black queer and trans people. That’s why she founded the Black Trans Fund, the nation’s fi rst fund to center joy and liberation in Black trans and gender-diverse communities. (She also serves as the fund’s program officer.) Bré previously served as the executive director of Trans Sistas of Color Project, an organization she formed in Detroit. She worked as an HIV intervention specialist at Wayne State University of Medicine and as a research assistant at the University of Michigan School of Public Health. She’s on the boards of PWN-USA, Transgender Resource Center of New Mexico, Third Wave Fund and Grantmakers for Girls of Color. Plus, she currently serves as a U=U ambassador for the Prevention Access Campaign. She graced the cover of POZ in January 2020 and said, “I am unapologetically creating something for Black trans folks.” ACE ROBINSON Long Beach, California
Veteran health equity administrator Ace Robinson, MHL, MPH, has been fighting for effective and equitable access to HIV education and treatment for people of color for nearly two decades. He was an early and vocal proponent of the importance of treatment as prevention, especially for minority communities. He’s an original member of the U=U steering committee and a cochair of the Federal AIDS Policy Partnership, a national coalition of more than 120 local, regional and national organizations advocating for federal funding and legislation to end the HIV epidemic in the United States. He served as director of strategic partnerships for GMHC and led the Center to End the Epidemics at NMAC. He’s currently the chief mission officer of the COVID Clinic, which was founded by a group of individuals dedicated to providing COVID-19 testing for all.
(BRÉ RIVERA) MAX WOLTMAN; (OTHERS) COURTESY OF INDIVIDUALS
LARRY SCOTT-WALKER Atlanta, Georgia
Baltimore native Larry Scott-Walker is an author, poet and proud Black gay man living with HIV. His passion for helping others landed him at various community-based and AIDS service organizations, including AID Atlanta, before he cofounded, with Dwain Bridges and Daniel Driffin, Transforming HIV Resentments into Victories Everlasting Support Services (THRIVE SS), a support group for Black same-genderloving men living with HIV. Larry is the group’s executive director. Founded in 2015 and based in Georgia, THRIVE SS has branches in Tennessee, California, South Carolina, North Carolina and Washington, DC. The group provides both inperson and 24/7 online peer support services. JAHLOVE SERRANO Staten Island, New York
A Guatemalan-American Bronx native, Jahlove Serrano had a challenging childhood and was diagnosed with HIV at
age 17. Today, he’s a youth advocate, health educator, model, runway coach, drag queen and all-around entertainer. He works with the New York AIDS Institute, National Gay Men’s Advocacy Coalition, the Global Network of People Living with HIV/AIDS and the White House. He currently appears in New York’s statewide “HIV Stops With Me” campaign. Jahlove is an ambassador for Positively Fearless, a Janssen campaign that promotes living your best positive life—and he’s proof that you can. CURTIS SMITH Hemet, California
Curtis Smith is the founder and CEO of the Families Living with AIDS Care Center, an HIV services agency in Hemet, California, about two hours southeast of Los Angeles. He founded the agency in 2004, when he, his wife and his daughter were extremely ill due to AIDS. The family had been unaware of the availability of lifesaving services for too long, and Curtis was determined not to let anyone in need in the Inland Empire region suffer the same fate. He’s currently the community cochair of the Inland Empire HIV Planning Council. Curtis says that, for him, serving others living with HIV is therapy. “When I’m helping others, I’m not thinking about myself and my pain,” he says. CHARLES STEPHENS Atlanta, Georgia
Charles Stephens is the founder and executive director of the Counter Narrative Project, which works to shift perceptions about Black gay men to change policy and improve lives. He served as the organizer for the historic 2014 conference “Whose Beloved Community? Black Civil and LGBT Rights” at Emory University. He also led the innovative social marketing campaign “From Where I Stand” for AID Atlanta. He coedited the anthology Black Gay Genius, which was a finalist for the Lambda Literary Award. Charles has been a CDC Institute for HIV Prevention leadership fellow, an Arcus Foundation executive director fellow and a Rockwood Leadership Institute fellow for racial and gender justice leaders in the HIV/AIDS movement. KRISHNA STONE New York, New York
For nearly 30 years, Krishna Stone has worked with GMHC, the world’s fi rst provider of HIV prevention, care and advocacy. She began as a volunteer in 1993; in 2015, she was promoted to director of community relations, a position that keeps her busy writing media alerts, coordinating interviews and organizing community events. Her commitment to HIV advocacy has been recognized both locally and statewide. In 2021, Krishna told CBS, “As a straight ally, I think it’s important for me to be of service,
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and that means to be of service to the LGBT+ community, to be of service to people living with and affected by HIV and AIDS.” ROBERT SUTTLE New York, New York
“HIV is not a crime!” For Robert Suttle, the phrase is more than a slogan or campaign to end HIV crime laws. In 2008, after a bad breakup, his former partner called the police and accused Robert, who is living with HIV, of not disclosing his status. Charged with a felony and incarcerated for six months in Louisiana, Robert emerged from the ordeal as an outspoken and knowledgeable activist about HIV criminalization (you’ll frequently fi nd him speaking about the topic on panels and Zoom events). He is the chair of The Elizabeth Taylor AIDS Foundation Council of Justice Leaders, an adviser for the HIV Justice Network’s Global Advisory Panel and a founding member of the Sero Project, which works to end HIV criminalization, mass incarceration, racism and social injustice. JASMINE TASAKI Memphis, Tennessee
In 2017, Jasmine Tasaki, a transgender woman of color, founded WeCareTN, a Memphis nonprofit that advocates for trans women of color who are current or former sex workers and provides direct programs and services. She uses harm reduction, healing justice and transformative justice frameworks in her work. She is the policy advocate for Black and Pink, a national prison abolition group focused on LGBTQ and/or HIV-positive people. Jasmine has worked as a PrEP navigator, HIV counselor, sexual health educator and cultural competency facilitator for the Memphis Police Department. She was also the fi rst leader of trans experience in the National Urban League of Young Professionals and was previously an ambassador for the Black AIDS Institute. She stays grounded in hopes that her work can really impact the community. LADAWN TATE Detroit, Michigan
After attending a Positive Women’s Health Speak Up Summit, LaDawn Tate was motivated to become more involved in HIV advocacy work. She currently cochairs the Southeastern Michigan HIV/AIDS Council, where she helped implement an HIV advocacy training program called Project LEAP (Learning, Empowerment, Advocacy and Participation). LaDawn is also an advocate for women living with HIV and formed a support group called Detroit RISE (Respect Is Empowerment), which helps women have conversations about their journey with HIV. An intervention specialist at Corktown Health Center, LaDawn says she will fight HIV until the very end.
44 POZ DECEMBER 2021 poz.com
TYLER TERMEER Portland, Oregon
Tyler TerMeer, PhD, aspired to have a career in theater, but after he tested positive in 2004, he dedicated himself to supporting and advocating for people living with HIV. Seventeen years later, he’s the chief executive officer of Cascade AIDS Project. The oldest and largest provider of HIV services in Oregon and Southwest Washington, Cascade AIDS is also the home of Prism Health, Oregon’s fi rst federally qualified health center focused on LGBTQ+ people. When the COVID-19 pandemic hit, Tyler joined other Black leaders and Black-led organizations to create the Oregon Cares Fund for Black Relief and Resilience, a fi nancial lifeline for the state’s Black community. MARVELL L. TERRY II Chicago, Illinois
A senior program manager for the Southern HIV Impact Fund at AIDS United, Marvell L. Terry II is a public health strategist, community builder and thought leader. A Memphis native, he began his HIV work linking newly diagnosed individuals to care and identifying and supporting those who had not been adherent to their health care plan. He is the founder of the annual Saving Ourselves Symposium, a conference for Black LGBTQ people living in the South that addresses the health and wellness of this population as well as the social injustices it faces. This brave gathering is now convened by the Southern AIDS Coalition. Marvell is the founder of BLK.Affirm, a digital mental health awareness initiative that reaches Black gay and same-gender-loving men. He previously founded The Red Door Foundation and Netherwood Consulting Group. KERRY THOMAS Boise, Idaho
In 2009, Kerry Thomas was sentenced to two consecutive 15-year sentences in prison for not disclosing his HIV status to a sexual partner who did not contract the virus from him. (He maintains that he was undetectable and used a condom.) Kerry has been an HIV decriminalization activist since 2014, when he spoke from prison via a TV feed at the first HIV is Not a Crime conference. He has also spoken to the media about care conditions for prisoners living with HIV. He has served on the board of the Sero Project since 2013 and in 2016 helped create a peer mentor program for newly arriving prisoners. In November 2020, Kerry’s sentence was commuted; he will be eligible for parole in September 2023. ALECIA TRAMEL Miami, Florida
When Alecia Tramel noticed that people living with HIV lacked social support, she created the Positive People
Network in 2015. The organization provides opportunities for meaningful connections and networking through social activities meant to empower, strengthen and uplift people living with HIV. Alecia is currently the Florida state lead for PWN-USA. She’s also a member of the Black Treatment Advocates Network, the Southern AIDS Coalition, the Florida Community Health Worker Coalition and the Florida HIV Justice Coalition. She is a blogger for The Well Project and was inducted into SisterLove’s 2020 Leading Women’s Society. Alecia fights HIV criminalization laws in her home state and works closely with homeless people. Those who know her describe her as a “powerhouse.” We can see why!
(TERRY) JONATHAN TIMMES; (OTHERS) COURTESY OF INDIVIDUALS
RACQUELLE TRAMMELL Detroit, Michigan
Miss Mouthy amplifies the voices of transgender women of color in Detroit. Hosted by the outspoken Racquelle Trammell, the podcast includes interviews with community leaders and offers listeners numerous HIV and health Clockwise from top left: Marvell L. Terry II, Tyler Termeer, resources. As a researcher at the University of LaDawn Tate and Jasmine Tasaki Michigan School of Public Health, Racquelle is a member of the Love Her Collective, a communityacademic partnership between the school and the Trans women and girls living with HIV. She’s also a member of Sistas of Color Project. She also helps women overcome the University of Houston’s SUSTAIN Advocacy Group. trauma, including trauma related to HIV and stigma, Since her own diagnosis in 2010 at age 23, Masonia has through the intervention group Kickin’ It With the served as a youth representative and volunteer for numerGurlz. As if that weren’t enough, she’s the proud mom of ous organizations, including Georgia’s Community HIV a 5-year-old daughter. “Everything I do,” Racquelle says, Prevention Planning Group, SisterLove, AID Atlanta and “is for her.” the Ryan White Planning Council. A much sought-after advocate and speaker and onetime PWN-USA Shero of the Month, she facilitates groups for women living with HIV LYNETTE TRAWICK and shares her own experiences as a mother living with the Philadelphia, Pennsylvania virus to help defeat the internalized stigma that keeps HIVpositive women from enjoying the lives they deserve. She’s As a mother of 11 children, Lynette Trawick knows a thing also the founder of Lady BurgAndy, a nonprofit that focuses or two about family life. And as the founder and ministry on health and wellness initiatives for youth, women and leader of I Am U, she uses her experience and wisdom to people living with HIV/AIDS. help guide and support women living with HIV as well as serodiscordant couples and children of parents who have been diagnosed with HIV. In addition to doing public JOYCE TURNER KELLER speaking and facilitating workshops—she participated in Baton Rouge, Louisiana Iris House’s 2020 Women as the Face of AIDS Summit— Lynette documents the challenges she faces as a woman Joyce Turner Keller is an ordained archbishop who uses art, living with HIV online in her candid blog posts for The community organizing and theater to address stigma in Well Project. churches across the country. She has lived with HIV for more than 20 years and is the founder and CEO of Aspirations, a nonprofit HIV service organization. Through her MASONIA TRAYLOR advocacy, she’s tested thousands of people and connected Atlanta, Georgia many to care. Joyce has led many conversations about the effectiveness of PrEP and the concept of U=U. She continues Masonia Traylor is a community advisory board member of to educate Black people, especially African-American The Well Project, a long-standing nonprofit with a focus on
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women, about the importance of sexual health whenever and wherever she can. She was previously honored on the 2016 POZ 100.
DARRELL P. WHEELER New Rochelle, New York
Darrell P. Wheeler, PhD, MPH, MSW, is a researcher with extensive experience in health disparities concerning Black MSM. He has led numerous HIV prevention and intervention studies, including serving as protocol cochair for HPTN 061, a study to explore the feasibility of a peer health navigation intervention with Black MSM, and as principal investigator for Black Men Evolving (B-ME), a study evaluating locally developed HIV prevention interventions. Darrell currently serves as the provost and senior vice president of academic affairs at Iona College in New York and was named a member of the Presidential Advisory Council on HIV/AIDS. Of his new appointment, he says, “I remain dedicated to promoting continued movement to end the AIDS epidemic and to promoting engagement of underrepresented minorities in HIV prevention sciences, care and treatment on an even larger scale.”
JASON WALKER Brooklyn, New York
Jason Walker began their career as an activist while protesting for racial justice as a student at the University of Louisville. After the murder of Trayvon Martin, they led a march and rally that gave rise to the development of the Louisville, Kentucky, chapter of Black Lives Matter. After their HIV diagnosis, they moved to New York City and began organizing at VOCAL-NY as the group’s HIV campaign coordinator. Jason recently served as the senior grassroots coordinator at Health GAP (Global Access Project). In 2019, their activism was recognized with the Ali Forney Center’s 2019 Luminary Award. They are a leader within the house and ballroom community as a member of the Legendary House of Garçon (CDG Pro).
As executive director of the Southern AIDS Coalition, Dafina Ward is fighting the HIV epidemic in the South, which accounts for an estimated 51% of new HIV cases annually. She is passionate about uplifting the voices of people living with HIV and providing them with access to the resources they need. She was previously a project director at AIDS Alabama and served as the organization’s director of prevention and community partnerships. In 2019, she helped launch the Southern HIV/AIDS Awareness Day, which is observed each August 20. Dafi na believes it’s important to empower people to be their own advocates and to show them how to be involved in fighting and preventing HIV. “If we want to end the epidemic on a national level,” she says, “everyone has to care about what happens in the South.”
46 POZ DECEMBER 2021 poz.com
Phill Wilson cofounded the Black AIDS Institute (BAI) in 1999 to, in his own words, “find a way to increase the engagement of Black communities in HIV/AIDS and take ownership of the pandemic in our communities.” He led the organization until the end of 2018, when he was succeeded by Raniyah Copeland, who was fi red by the board last summer amid an ongoing dispute between the predominantly straight white male board and much of the broader Black HIV/AIDS community. In late August, Phill issued a statement urging that everyone remaining on the BAI board step down, to be replaced by Black people living with HIV and others who better represent the diversity of the HIV community. (Read more about Phill’s work on page 48.) From top: Darrell P. Wheeler, Masonia Traylor, Dafina Ward and Jason Walker
Written by Alicia Green, Joe Mejía, Jennifer Morton, Tim Murphy, Trent Straube and David Thorpe
(WHEELER) HIV.GOV; (OTHERS) COURTESY OF INDIVIDUALS
PHILL WILSON Los Angeles, California
DAFINA WARD Bluffton, South Carolina
HEALTH BASICS You and Your Doctor Managing HIV involves teamwork. A good relationship with your health care providers is key to good health. Here are a few tips to help you get the most out of your doctor visits.
DO YOU OFFER HIV SERVICES? GET A FREE POZ HEALTH INFORMATION POSTER FOR YOUR WAITING ROOM. Also available in Spanish.
BE PREPARED
TAKE NOTES
Between trips to the doctor, keep a running list of questions you have about your health on a notepad or on your smartphone. That way, you’ll maximize your time once you’re face-to-face with your doctor—and you won’t forget to bring up any of your concerns.
Write down any instructions or information your doctor gives you during your appointment. Or ask your doctor if it’s OK to record notes on your smartphone.
ASK QUESTIONS Don’t be afraid to let your doctor know when you don’t understand something. Your doctor may be busy, but you have the right to ask questions and to state your needs, concerns and fears. A good doctor, even a busy one, will hear you and respond in kind. Your health care provider should also be available between visits if you have urgent issues or queries.
BE HONEST Have you been depressed? Not sleeping well? Have you missed doses of your meds? Be honest with your doctor about what’s going on in your life. It’s the only way he or she can really assess your health and help you.
BRING A FAMILY MEMBER OR FRIEND
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“My doctor keeps me informed and always gives me options and ideas to improve my health care. I’m healthier than I’ve ever been.”
Some people find it helpful to bring along a family member or friend for support or to take notes and help you remember what was discussed.
TALK ABOUT OTHER MEDS
FREE FOR YOUR OFFICE!
—Richard Richard Schieffer, Schieffer, New York City,
HIV meds can have bad interactions with other drugs, so be sure to tell your doctor about anything else you’re taking, including overthe-counter medications, vitamins, herbs, supplements, alcohol or recreational drugs.
Positive since 2011
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HEROES BY CHARLES SANCHEZ
Phill Wilson, 65, was raised in the row houses of the Altgeld Gardens housing project in the far South Side of Chicago. “I don’t think anyone would say that I was a troublemaker,” he says, “but I do think my early childhood forecast who I would become as an adult.” “I remember as early as kindergarten,” Wilson says, “I had a neighbor. I’m the oldest of four. She was a middle child in a family of seven or eight. The result being that my parents had more time to spend with me than hers did with her. We got to kindergarten, and there were all these things that I already knew how to do. I knew how to read and tie my shoes, and she didn’t.” When his friend stumbled over some challenges, like tying her shoes, Wilson would step in to help. “Whatever the project was, I would finish and then go over and help her. It upset the teacher, and I didn’t understand it. But she would berate my friend, and that really bothered me.” The two were separated into different classes. “I said to my mother that it made me sad, because my friend was struggling, and I could help,” Wilson recalls. Wilson’s bigheartedness and desire to be helpful grew as he matured. As an adult, he and his then partner moved to Los Angeles in the early 1980s, when rumblings about a disease affecting gay men were first heard. Friends started getting sick and dying. After Wilson and his partner both tested positive for HIV, they volunteered for the cause. Before too long, Wilson was asked to head the STOP AIDS Project in LA. He has served as the AIDS coordinator for the city of Los Angeles, the director of policy and planning at AIDS Project Los Angeles and on the Presidential Advisory Council on HIV/ AIDS, among myriad other positions. In 1999, Wilson founded the Black AIDS Institute (BAI), the only national HIV/AIDS think tank focused on the Black community, and served as its president and CEO. Throughout his entire career, Wilson passionately and steadfastly battled stigma and bigotry in the fight against HIV, and his work was recognized both nationally and internationally. After nearly 20 years of service, Wilson stepped away from BAI in December 2018. “My personal crowning achievement is that I think I was able to demonstrate how to say goodbye,” he says. “I was able to appreciate my own limitations, to read the tea leaves of the signs of the times, to embrace that for every time there is a season. I’m very proud of the growth and accomplishments of the institute in the time since I stepped down.” Wilson is now working on a memoir and coming to terms with a life lived focused on HIV/AIDS advocacy. “I’m trying to process my own PTSD,” he says, “40-plus years of suppressed trauma and grief and compartmentalization that there was no time and no space to address.” After giving so much of his life to service, Wilson is now concentrating on himself. “For me, it’s been important to lean into gratitude,” he says. “Those of us who are aging—I think it’s a requirement for us to celebrate, and it’s disrespectful to all our friends [we lost] not to.” ■
48 POZ DECEMBER 2021 poz.com
Phill Wilson is the founder and former president and CEO of the Black AIDS Institute.
COURTESY OF THE BLACK AIDS INSTITUTE
A Life of Service
SURVEY
9
Have you ever provided care or support to someone living with HIV?
❑ Yes 10
Have you ever shared your story about living with or being affected by HIV/AIDS?
❑ Yes
’TIS THE SEASON It’s the season of giving back, but you can contribute to the cause of ending HIV in numerous ways all year long. Whether you donate your time, your talent or your $20 bill, POZ wants to know what you do to give back and make a difference. 1
2
❑ Frequently ❑ Sometimes 12
❑ Yes
What is your gender?
How often do you volunteer for an HIV/AIDS organization or charity?
❑ Male ❑ Female 15
❑ Rarely ❑ Never
How often do you participate in walks, bike rides or other activities to raise HIV awareness?
16
❑ Rarely ❑ Never 17
ISTOCK
❑ No
Have you ever been a mentor to someone living with HIV?
❑ Yes
❑ No
What is your current level of education?
What is your annual household income?
❑ Less than $15,000 ❑ $15,000–$34,999 ❑ $35,000–$49,999
How informed are you about HIV and the various options for prevention and treatment?
❑ Yes
What is your ethnicity? (Check all that apply.)
❑ Some high school ❑ Some college ❑ High school graduate ❑ Bachelor’s degree or higher
❑ Rarely ❑ Never
Have you ever accompanied someone to get an HIV test?
What is your sexual orientation?
❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (Please specify.): ___________________
How often do you purchase clothing or accessories to raise HIV awareness?
How often do you talk about HIV-related issues with your family and friends?
❑ Transgender ❑ Other
❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other
❑ Rarely ❑ Never
❑ Very informed ❑ Somewhat informed ❑ Not very informed
8
❑ No
14
❑ Rarely ❑ Never
18
7
Do you belong to any HIV/AIDS advocacy groups or networks?
❑ Frequently ❑ Sometimes
❑ Frequently ❑ Sometimes 6
❑ Rarely ❑ Never
What year were you born? __ __ __ __
❑ Frequently ❑ Sometimes 5
How often do you use social media to raise HIV awareness?
13
❑ Frequently ❑ Sometimes 4
❑ No
How often do you donate or raise money for an HIV/AIDS organization or charity?
❑ Frequently ❑ Sometimes 3
11
❑ No
19
❑ $50,000–$74,999 ❑ $75,000–$99,999 ❑ $100,000 or more
What is your employment status?
❑ Employed, full-time ❑ Employed, part-time or freelance ❑ Unemployed, on disability ❑ Unemployed, not on disability ❑ Retired ❑ Other 20 What is your ZIP code? __ __ __ __ __
Please fill out this confidential survey at poz.com/survey. Or scan or take a photo of your completed survey and email it to website@poz.com.
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
PZA527808.pgs 01.22.2021 18:40
ESA