A SMART+STRONG PUBLICATION JANUARY/FEBRUARY 2021 POZ.COM $3.99
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Black Lives Still Matter Uplifting social justice and HIV Bré Anne Rivera
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Bré Anne Rivera founded and directs the Black Trans Fund.
POZ STORIES
REAL PEOPLE, REAL STORIES Together, our stories can change the way the world sees HIV/AIDS. They inspire others in the fight and break down the shame, silence and stigma surrounding the disease. Go to poz.com/stories to read the experiences of others like you and to submit your own story.
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PERSONAL PERSPECTIVES Our roster of bloggers spans the diversity of the HIV/AIDS epidemic. Go to poz.com/blogs to read their viewpoints, then join the conversation in the comments section. Find hope and inspiration from others.
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SCIENCE, NOT STIGMA
The science is clear: People who have an undetectable viral load can’t transmit HIV sexually. This means that in addition to keeping people living with HIV healthy, effective treatment also acts as HIV prevention. Visit poz.com/ undetectable for more.
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22 BLACK LIVES STILL MATTER Uplifting social justice and HIV BY OLIVIA G. FORD 28 LOVE IN THE TIME OF COVID-19 For many people living with HIV, the coronavirus pandemic has added to the challenge of finding intimacy. BY TIM MURPHY 3 FROM THE EDITOR
16 RESEARCH NOTES
I’m Still Here
Diagnoses decline among gay and bi men • long-acting antibody Trogarzo • mapping the HIV reservoir • multidrug resistance
4 POZ Q+A The Black AIDS Institute hosted Anthony Fauci, MD, for an online conversation on COVID-19 and HIV.
6 POZ PLANET Intimate images, art and musings in the monograph Eric Rhein: Lifelines • books to get you through the winter • Queer Meets Queer relationship stories • Everyday
18 CARE AND TREATMENT More good news about ViiV’s long-acting injectable • islatravir-based treatment shows promise • fatty liver disease and diabetes • among women, HIV is tied to chronic health conditions
20 BASICS Getting exercise at home or outdoors
12 VOICES Healthcare Anchor Network states that “Racism Is a Public Health Crisis,” and Edwin Bernard of the HIV Justice Network declares, “We Are People, Not Clusters.” Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.
14 SPOTLIGHT The 2020 election results
21 ASK POZ When will we have a COVID-19 vaccine?
32 HEROES Raniyah Copeland leads the Black AIDS Institute and centers African-American perspectives in the fight against HIV.
POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for an 8-issue subscription) by Smart + Strong, 212 West 35th Street, 8th Floor, New York, NY 10001. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 249. POSTMASTER: Send address changes to POZ, 212 West 35th Street, 8th Floor, New York, NY 10001. 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 AND THIS PAGE: (RIVERA) MAX WOLTMAN; (TYPEWRITER AND MAGNIFIER) ISTOCK; (MEGAPHONE) THINKSTOCK
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FROM THE EDITOR
I’m Still Here
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BELIEVE IT’S FAIR TO SAY that most of us are happy to see 2020 gone. No doubt that many of us experienced bright spots last year (I turned 50!), but the combination of COVID-19, the economy, racial justice protests and the presidential election was all-consuming. I’m grateful that we’re making progress on those matters, but that doesn’t mean we don’t have more work to do. We have seemingly effective vaccines for the new coronavirus, but widespread distribution is still months away. The economy remains weak. We are nowhere near being politically united. Of all the issues that continue to challenge us, racial justice is the most vexing. Although much has improved, so much is still left undone. Too much. As sad as it is to have to say, perhaps that realization is a silver lining from 2020. Folks from all walks of life finally woke up to the realities of being Black in America. Last year’s resurgence of the Black Lives Matter movement inspired us to take stock, yet again, of how social justice and HIV are interconnected. We did so five years ago with our January/February 2016 cover story, which highlighted the efforts of Black Lives Matter activists. To what should be no one’s surprise in 2021, Black lives still matter. For our current cover story, we caught up with former cover guy Ashton Woods. In addition to living with HIV, he was a founding organizer of Black Lives Matter Houston. However, the events of the past five years have given us much more to explore. The efforts of Bré Anne Rivera, our new cover subject, are a great example of how the HIV community is stepping up. She founded and directs the Black Trans Fund, which launched in January 2020. Her organization provides funding to groups led by Black trans people. Go to page 22 to read more on uplifting social justice and HIV. The work of Raniyah Copeland, president and CEO of the Black AIDS Institute (BAI), is also an example of how HIV advocates are
meeting this moment. She’s been busy. As discussed in our cover story, one of her initiatives in 2020 was to create a digital support network for Black executives in the HIV community. Also in 2020, BAI released a report titled “We the People: A Black Plan to End HIV.” The plan was created for organizations to adopt and adapt as a framework to guide their HIV work. Go to page 32 to read more about Copeland and the future of BAI. In this special issue dedicated to African Americans, we underscore how Black people are disproportionately affected by COVID-19 in addition to HIV. Go to page 4 to read a condensed transcript of an online conversation hosted by BAI with Anthony Fauci, MD, which addressed the struggles of African Americans with the new coronavirus. A consequence of the COVID-19 pandemic has been a lack of physical connections. Many of us living with HIV already experience challenges finding intimacy. The coronavirus has added yet another hurdle. Go to page 28 to read about love in the time of COVID-19.
ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF editor-in-chief@poz.com
Want to read more from Oriol? Follow him on Twitter @oriolgutierrez and check out blogs.poz.com/oriol.
poz.com JANUARY/FEBRUARY 2021 POZ 3
POZ Q+A
Anthony Fauci (left) interviewed by (from top) Jesse Milan, Grazell Howard, Marlene McNeese and Raniyah Copeland
The Black AIDS Institute hosts a conversation with Anthony Fauci, MD, on COVID-19 and HIV.
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NTHONY FAUCI, MD, WAS THE GUEST OF THE BLACK AIDS Institute (BAI) in an online conversation held in September 2020. He is director of the National Institute of Allergy and Infectious Diseases, which is a part of the National Institutes of Health. He is a longtime HIV researcher and a leading COVID-19 expert. The discussion was part of BAI’s speaker series “The Blacker The Plan: Our People. Our Problem. Our Solution.” In this episode, Fauci explored the specific COVID-19 needs of Black people and those living with HIV. He was joined by Raniyah Copeland, MPH; Grazell R. Howard, JD; Marlene McNeese; and Jesse Milan Jr., JD. Copeland is BAI president and CEO. Howard is founder and CEO of the consulting firm King & Kairos. She is also BAI board chair. McNeese is assistant director of the disease prevention and control division of the Houston Health Department. She is also a BAI board member. Milan is president and CEO of AIDS United and a long-term HIV survivor. He is also BAI board chair emeritus. The episode begins with this question: “Black Americans have acquired COVID at more than twice the rate of our white counterparts. Even worse? Our death rate is three times higher. How can we safeguard ourselves from this health disparity?” Below is a condensed transcript. Go to BlackAIDS.org for more. —Oriol R. Gutierrez Jr.
Copeland: Where are we with COVID-19, particularly as it relates to Black people? Fauci: Just take a look at where we are in general, and you’ll see that relates significantly to African Americans. The outbreak right now is significant and severe. As a nation, we went up to a peak but didn’t go back down to a baseline that’s very low, like
4 POZ JANUARY/FEBRUARY 2021 poz.com
tens or hundreds of new cases per day. We plateaued at about 20,000 per day, and we did that for weeks until we started to open up America again. That was not done very successfully in certain parts of the country, so that now you’re seeing up to 70,000 new cases a day. [Editor’s note: At press time, new daily infections had exceeded 160,000.] Within that context, what continues to happen [to African Americans] is that you have a disproportionate burden— not only of infections but of the serious consequences of getting infected. In general, Black people are in essential worker jobs that do not allow them to protect themselves as much as others who can work from home. As a result, their likelihood of getting infected is greater than the general population. Further, African Americans have a disproportionately higher rate of the kinds of comorbidities that lead to a serious outcome [from COVID-19], such as diabetes, hypertension, obesity, heart disease, kidney disease and chronic lung disease.
ALL IMAGES: COURTESY OF THE BLACK AIDS INSTITUTE
OUR SOLUTION
So if you look at African Americans as a whole population, I call it a double whammy. They have a greater chance of getting infected, and when they do get infected, they have a greater chance of hospitalization, intensive care and dying. That is not acceptable, but it’s true. Milan: What do people living with HIV need to know about COVID-19?
HIV is complicated. The reason is there’s such a spectrum of persons living with HIV. I would imagine immunosuppression, regardless of the cause, gives you a greater risk of a serious outcome. But if you look at someone who is living with HIV, is on antiretroviral therapy and they have a high CD4 count, I don’t see them at significantly greater risk [of serious outcomes]. However, people living with HIV whose viral load is not suppressed to undetectable and who have a low CD4 count, they are immunodepressed. As a result, they have a greater risk of a serious outcome. This is a greater reason to get people tested for HIV and, if positive, get them on HIV treatment.
Fauci:
McNeese: What lessons from HIV can we apply to COVID-19? Fauci: There are so many lessons. It’s the HIV community that has actually come to the front to help out with the new coronavirus. In fact, the U.S. COVID-19 vaccine Phase III trials are, to a significant degree, being conducted by the HIV networks that we all built over the decades. All of that is being leveraged. Of all the things that we could learn, it’s the importance of community engagement. No one did that better— creating a relationship between the community, the investigators and the regulators—than the HIV movement. We need that to address the new coronavirus if we want to do effective trials for therapies and vaccines.
What can be done for people living with comorbidities if they get COVID-19?
Howard:
Fauci:
What government needs to do
is concentrate resources in AfricanAmerican communities. We need quick COVID-19 diagnoses and access to health care, so if they have underlying conditions, we can get those diagnosed and treated. Untreated or poorly controlled diabetes or hypertension are always worse [for COVID-19] than when well controlled. The same thing for all the other comorbidities. Rapid diagnoses of COVID-19 and getting comorbidities under control can be done simultaneously. Systemic racism is a constant driver of health inequalities in the Black community. What are the medical and public health fields doing to ameliorate these inequities?
Milan:
you can get them into care quickly. Also, many people who are infected have no symptoms. If you can identify them, you can get them to isolate themselves so that they won’t wind up infecting others. That’s the whole purpose—to protect the people you may have exposed and to prevent further spread. The phrase “contact tracing” sometimes makes people shiver because that means you’re encroaching on their privacy. We want to protect people and prevent further spread of the new coronavirus in the community. We don’t want to encroach on anyone’s privacy. Howard: What is the extent of Black par-
ticipation in the COVID-19 clinical trials? Fauci: We’ve made it a goal to reach out
Fauci: That’s a great question, but there’s
no easy answer to it. The inequities are
by community engagement to get an appropriate representation of the African-
“This will end. This is not going to be with us forever.” obvious, you don’t need to be a rocket scientist to see it. The medical and public health communities need to be very vocal about demanding things be done to change those inequities. It’s not going to be something that happens overnight, that’s for sure. Access to health care clearly needs to be worked on, but there are so many other more complicated issues. One of the things that can be done broadly, so that you get the tide that brings all the boats up, is to increase economic opportunities for African Americans. That would go a long way. McNeese: How do we encourage Black Americans to participate in contact tracing for COVID-19? Fauci: Let’s say I’ve been in contact with
10 people and I’ve infected two of them. If you identify those who are infected,
American community in clinical trials. It’s important to know if there are any differences in the degree of an immune response, in efficacy and in adverse events. About 20% of participants in the Moderna trial are African American. Copeland: Any final thoughts?
Don’t be discouraged, because this will end. This is not going to be with us forever. We’ve all been locked down for months. It’s wearing us down, but please hang in there. Take care of yourselves—physical distancing, wear a mask, avoid crowds. Stay away from bars. I like bars. I like to sit down at a bar and have a beer and a little snack, but bars are a prime place where it spreads. And do personal hygiene. Do those things and you will diminish greatly the chance that you will get infected. ■
Fauci:
poz.com JANUARY/FEBRUARY 2021 POZ 5
POZ PLANET BY TRENT STRAUBE
Clockwise from top left: Eric Rhein’s studio; Georges (Georges Grenier), 1996; Kissing Ken (self-portrait with Ken Davis), 1996; Silver Buck (Fire Island), 2010; and Jeff and Tim (Jeffrey Geiger and Tim Goetz), 2005. Below, the book’s cover: Company (self-portrait), 1998.
THE ART OF CONNECTING Eric Rhein has roots in Appalachian Kentucky. He moved to New York’s East Village in 1980 and was diagnosed with HIV in 1987. When you look at images of his artwork—delicate wire assemblages and photography of tender moments— and you read the heartfelt musings collected in the monograph-memoir Eric Rhein: Lifelines, you can sense his reverence for nature, AIDS history, medical advances, human touch and family (his uncle Lige Clarke was a pioneering gay rights activist who was murdered execution style in 1975). “I’m grateful,” Rhein tells POZ, “to my queer friends of a younger generation who see their lives informed by the height of the AIDS crisis that I’ve lived through, just as I see (and have been
6 POZ JANUARY/FEBRUARY 2021 poz.com
nourished by) my generation’s lineage with the gay rights movement of the 1960s and ’70s. There is healing within the consciousness of interconnection— including being awake to our relationships with those who died.” He honors The book features friends lost to AIDS photos taken through a series of between 1989 over 300 memorial and 2012. pieces titled Leaves, in which wire outlines—“lifelines”—of individual leaves give rise to metaphoric portraits. Rhein hopes the book offers “a voice that emphasizes the transformative qualities of love, intimacy and care—especially within life’s great challenges.”
ALL IMAGES: COURTESY OF INSTITUTE 193/ERIC RHEIN
Love, intimacy and HIV history abound in Eric Rhein: Lifelines.
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READING IS FUNDAMENTAL
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These books will get you through winter lockdowns. Drawing on Walls: A Story of Keith Haring by Matthew Burgess with illustrations by Josh Cochran You could say this is a children’s book that recounts the life of beloved graffiti artist Keith Haring (including the fact that he died of AIDS-related illness). But the truth is that the illustrations and story delight all ages. 1
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Holeplay by Dan Schapiro This slim volume of poetry offers cryptic and minimal yet smartly erotic and playful verse by a self-described “disabled poet living with HIV.” 2
How We Live Now: Scenes From the Pandemic by Bill Hayes Hayes, a street photographer and writer (and partner of the late neurologist and author Oliver Sacks), puts both skills to awesome use in capturing New York City during six weeks of the COVID-19 pandemic and in the shadow of HIV. 3
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The Theory of Flight by Siphiwe Gloria Ndlovu Now available in North America, this epic novel weaves magical realism and myth in the life story of Imogen “Genie” Zula Nyoni (who is HIV positive) and her South African family history, including wars, poverty, colonialization, love and race. 4
Love Don’t Need a Reason: The Life & Music of Michael Callen by Matthew J. Jones POZ readers likely know Michael Callen as a groundbreaking AIDS activist and safe-sex pioneer (he died in 1993). But he was also an accomplished singer and songwriter. The author, who has a PhD in critical studies in music, offers a detailed and insightful biography through the lens of Callen’s music and lyrics.
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To Make the Wounded Whole: The African American Struggle Against HIV/AIDS by Dan Royles The author’s intro best sums up the book’s mission: “AIDS has devastated Black Americans and continues to do so. This book tells the story of how African Americans organized to fight back.” Profiled groups include ACT UP Philadelphia, The Balm in Gilead, Gay Men of African Descent and SisterLove, plus numerous Black advocates.
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LGBTQ Health Research: Theory, Methods, Practice edited by Ron Stall, PhD, MPH, et al. What’s the best way for public health officials to research marginalized communities and understand their unique needs and disparities? Here, top scholars offer guidance, including on HIV prevention and care. 7
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IMPORTANT FACTS FOR BIKTARVY®
This is only a brief summary of important information about BIKTARVY and does not replace talking to your healthcare provider about your condition and your treatment.
(bik-TAR-vee)
MOST IMPORTANT INFORMATION ABOUT BIKTARVY
POSSIBLE SIDE EFFECTS OF BIKTARVY
BIKTARVY may cause serious side effects, including:
BIKTARVY may cause serious side effects, including: Those in the “Most Important Information About BIKTARVY” section. Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY. Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY. Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).
Worsening of hepatitis B (HBV) infection. If you
have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to check your health regularly for several months.
ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults 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:
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.
Have or have had any kidney or liver problems,
including hepatitis infection.
Have any other health problems.
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.
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.
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.
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.
Get HIV support by downloading a free app at
MyDailyCharge.com
GET MORE INFORMATION This is only a brief summary of important information
about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.
Go to BIKTARVY.com or call 1-800-GILEAD-5 If you need help paying for your medicine,
visit BIKTARVY.com for program information.
BIKTARVY, the BIKTARVY Logo, DAILY CHARGE, the DAILY CHARGE Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2020 © 2020 Gilead Sciences, Inc. All rights reserved. BVYC0197 03/20
PZA526850.pgs 12.04.2020 00:58
ESA
ZACH LIVING WITH HIV SINCE 2009 REAL BIKTARVY PATIENT
KEEP EXPLORING. 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. See Zach’s story at BIKTARVY.com. Featured patient compensated by Gilead.
Please see Important Facts about BIKTARVY, including important warnings, on the previous page and visit BIKTARVY.com.
PZA526851.pgs 12.04.2020 00:59
ESA
POZ PLANET BY TRENT STRAUBE
DOCTOR AS FRIEND As our feature story “Love in the Time of COVID-19,” page 28, wonderfully illustrates, intimate and enriching relationships can take many forms, including platonic ones. To hear similar tales, tune in to Queer Meets Queer, a new podcast that highlights LGBTQ relationship stories. In the episode “An HIV Patient, a Doctor & a Friendship,” long-term survivor Malcom Above: one of the Gregory Scott recounts how in 1994, he podcast’s hosts. had a Kaposi sarcoma lesion on his left Right: the logo; temple but couldn’t afford treatment— guests Malcom until a buddy introduced him to Doug Gregory Scott and Ward, MD. Despite the mutual attraction, Doug Ward, MD. the two never hooked up, due to ethical standards on Ward’s part but also because Scott had a rule to sleep only with people who had HIV. Yet a lifelong friendship developed. Listening to these men recount their history offers a fascinating (and fun!) glimpse into HIV history, including ACT UP Washington, DC; hookups via AOL chat rooms; and the advent of lifesaving treatment. Queer Meets Queer describes itself as “a podcast dedicated to queer people telling the stories behind the most important
relationships in their lives.” It’s based in Portland, Oregon, and hosted by four people, including Weston Anderson, 29, who prefers they/them pronouns and was diagnosed with HIV five years ago while living in China. “Because of my HIV status, I have gained the experience of being rejected romantically and/or sexually based purely on an identity,” they tell POZ. “I think that my HIV diagnosis has made me a more empathetic person.” That bodes well for a host who explores “the dizzying diversity of relationship models out there. I desperately want to talk about these relationships. I want to bring them out of the closet. I want to gain a better understanding of what types of relationships are possible.” Anderson says future episodes will include HIV themes and advises people interested in telling their stories to visit QueerMeetsQueer.com. “LGBTQ+ relationship stories matter,” they add. “Following the height of the AIDS epidemic, we lost a generation of leaders, of mentors, of people who could show us the way. We need these stories. I don’t think it’s an exaggeration to say that these stories will save lives.”
EVERYDAY January
February
These dates represent milestones in the HIV epidemic. Visit poz.com/aidsiseveryday to learn more about the history of HIV/AIDS. BY JENNIFER MORTON
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The WOMEN’S CAUCUS OF ACT UP NEW YORK stages its first protest. It targets a Cosmopolitan magazine article by Robert E. Gould, MD, that claims women are not at risk for HIV. (1988)
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The documentary LARRY KRAMER IN LOVE & ANGER premieres at the Sundance Film Festival. In June, it airs on HBO. (2015)
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The New York Times reports that more than 100,000 AMERICANS have died of AIDS-related causes. (1991)
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7
NATIONAL BLACK HIV/ AIDS AWARENESS DAY
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President Barack Obama announces that JEFFREY CROWLEY will be the director of the Office of National AIDS Policy to coordinate efforts to address the ongoing AIDS crisis. (2009)
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WILHEMINA’S WAR premieres on PBS. The documentary follows Wilhemina Dixon, an African-American woman in South Carolina who helps her granddaughter face the struggles of living with HIV. (2016)
(QUEER MEETS QUEER IMAGES) COURTESY OF QUEER MEETS QUEER; (IPHONE AND FLAG) ISTOCK; (WILHEMINA’S WAR) YOUTUBE/PBS; (WOMEN’S PROTEST) VIMEO/DOCTORS, LIARS AND WOMEN: AIDS ACTIVISTS SAY NO TO COSMO
An epidemic brought them together. A podcast shares their tale.
Have questions about COVID-19? Visit COVIDHealth.com, your trusted source for coronavirus prevention, vaccine and treatment news.
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IT’S UNDENIABLE
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s members and leaders of health care groups across the nation addressing the disproportionate Black and Brown mortality of COVID-19, we say without hesitation that Black Lives Matter. No person of decency can look at the images of George Floyd’s killing without feelings of rage, horror, shame and grief. The deaths of George Floyd, Rayshard Brooks, Ahmaud Arbery, Breonna Taylor —and too many others—are unjust. We must double down on our efforts. Systemic racism poses a real threat to the health of our patients, families and communities. We stand with all those who have raised their voices. The health systems we represent are deeply woven into the fabric of the communities we serve, live and work in, and we stand united as frontline groups against racism, injustice and inaction. Systemic racism results in generational trauma and poverty while also causing higher rates of illness and death in Black and Indigenous communities and communities of color. We have seen how the trauma of systemic racism adds to the historical injustices that have disproportionately affected communities of color. Health systems across the nation work to provide high-quality, compassionate care in the face of health disparities and poor outcomes resulting from social and economic inequities. In rural areas, where resources are spread
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out across larger geographies, we have seen health care groups and community partners adapt to shifting conditions. These social determinants of health include poverty, inadequate housing, underperforming schools, police brutality, mass incarceration, food deserts, joblessness and underemployment, violence and poor access to health care. All these factors contribute to health inequities in our communities. And they serve as a recipe for pain, suffering, premature mortality and civil unrest. There are also resilience, innovation, a tradition of faith and a spirit of unity that thrive under this systemic burden. Imagine the potential for our communities with improved social and economic conditions and health outcomes. It’s time for action. We will work more intentionally with community-based partners in building and sustaining the sweeping change needed to ensure health equity across the country and in our most under-resourced communities. As health care groups, we are committed to being part of the solution, both within our organizations and in partnership with local community groups. We are focused on improving access to care and eliminating systemic racism, which contributes to poor health outcomes. We have come together as part of the Healthcare Anchor Network, a health system–led collaboration working to improve community health and well-
being by leveraging our assets, including hiring, purchasing and investment for equitable, local economic impact. Our society only truly thrives when everyone has an opportunity to succeed and live a healthy life. We are committed to moving forward together. By harnessing the collective strengths of our organizations, we will help serve our communities as agents of change. The health care systems that have signed on to this statement are: Advocate Aurora Health, Alameda Health System, AMITA Health, Baystate Health, BJC HealthCare, Bon Secours Mercy Health, Boston Children’s Hospital, Boston Medical Center, Children’s Hospital of Philadelphia, ChristianaCare, Cleveland Clinic, CommonSpirit Health, Cone Health, Dartmouth-Hitchcock Health, Denver Health, Einstein Healthcare Network, Franciscan Missionaries of Our Lady Health System, Gundersen Health System, Kaiser Permanente, Lurie Children’s, M Health Fairview, Maimonides Medical Center, Mass General Brigham, Northwell Health, ProMedica, Providence St. Joseph Health, Rush University Medical Center, RWJBarnabas Health, San Mateo County Health, Seattle Children’s, Spectrum Health, The MetroHealth System, Trinity Health, UC San Francisco, UMass Memorial Health, University Hospitals, University of Utah Health, VCU Health and Yale New Haven Health. ■
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In an opinion piece titled “Racism Is a Public Health Crisis,” the Healthcare Anchor Network commits to addressing racism and the public health disparities it causes. Below is an edited excerpt.
WE ARE PEOPLE In an opinion piece titled “We Are People, Not Clusters!” Edwin Bernard, executive director of the HIV Justice Network, argues that molecular HIV surveillance risks doing more harm than good. Here is an edited excerpt.
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rticles and editorials in the October 2020 issue of the American Journal of Bioethics examine the use of blood taken from people living with HIV during routine testing before they started or changed antiretroviral therapy. These samples were put in surveillance databases without our permission and used for public health purposes. This is already taking place across the United States and in some Canadian provinces and is currently being considered elsewhere in the world. The rollout of so-called molecular HIV surveillance to identify “clusters” of transmissions to attempt to further improve public health responses to HIV is a growing source of anxiety and concern for people living with HIV, especially for people who are already marginalized and criminalized in other ways, because they can’t be certain that this data won’t be shared with law enforcement or immigration authorities. In our lead guest editorial, titled “We Are People, Not Clusters!”—which I coauthored with Alexander McClelland, Barb Cardell, Cecilia Chung, Marco Castro-Bojorquez, Martin French, Devin Hursey, Naina Khanna, Brian Minalga, Andrew Spieldenner and Sean Strub— we support the concept of “HIV data justice” put forth in the lead article, “Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster
Detection and Response: Toward HIV Data Justice,” by Stephen Molldrem and Anthony Smith. From the Molldrem and Smith article: “HIV data justice draws on the collective resources of the HIV/AIDS movement to build new alliances [to provide] affected individuals and communities with greater control over how their data are utilized in the health care system, with the paired aim of providing them with greater access to better services on terms of their own choosing.” In the editorial, we welcome Molldrem and Smith’s critique of the controversial rollout of molecular HIV surveillance (MHS) in the United States, which explores three intersecting concerns: (1) the nonconsensual repurposing of personal health information and biomaterial for public health surveillance; (2) the use of molecular HIV surveillance data in larger databases to find “clusters” of infections and to make determinations about transmission directionality and the criminalizing implications that follow such determinations; and (3) the way MHS amplifies the targeting and stigmatization of already oppressed and marginalized communities. The editorial questions the rationale behind the use of MHS as one of four pillars of the U.S. Centers for Disease Control and Prevention’s (CDC) End the
Epidemic Plan and calls for the abolition of molecular HIV surveillance in the United States as it is being rolled out by the CDC. It blurs the boundaries between consent and criminalization. Instead, we envision a future of new participatory and intersectional racial and viral justice possibilities, one that ensures the lives, self-determination, voices and autonomy of people living with HIV are central to HIV research and public health practice. From our guest editorial: “This editorial is an act of refusal...to allow our bodies to be treated as troves of data, and as risks to be calculated. We are people to be consulted, to be heard, and to be engaged with, on all aspects of our lives. As such, this editorial is also a rejection of MHS and the public health practices of objectification.... Instead, we call for participatory and communitylocated, intersectional, racial and viral justice approaches to respond to HIV. “In 1983, people living with HIV stood in front of medical professionals in Denver and stated: We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.’ “Today, we add to this statement: We are people, not clusters!” ■
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SPOTLIGHT BY JOE MEJÍA
Biden-Harris 2020 When the 2020 U.S. presidential election was called for former Vice President Joe Biden and Senator Kamala Harris on November 7, HIV/AIDS and human rights advocates rejoiced. That’s because President Trump’s administration was characterized by a failure to prioritize health, including that of minorities and people with HIV and other chronic illnesses. This was evidenced by the administration’s firing in 2017 of a dozen members of the Presidential Advisory Council on HIV/AIDS, its numerous attempts to dismantle the Affordable Care Act (ACA) and its disregard for science-based strategies to combat the COVID-19 pandemic, which has resulted in a disproportionate number of cases of severe illness and death among Native Americans, African Americans and Latinos. The ACA has provided insurance to more than 20 million Americans, allowed for the expansion of Medicaid in 37 states and protected people with preexisting conditions, including HIV, against being denied insurance coverage. President-elect Biden has vowed not only to protect the ACA but also to expand the health care law to include a governmentadministered health insurance option like Medicare. While acknowledging that much more work lies ahead, advocates see in a Biden-Harris administration powerful allies in the fight for a more equitable health future who will take a synergistic approach to combating HIV and COVID-19.
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RESEARCH NOTES BY LIZ HIGHLEYMAN
TREATMENT
CURE
CONCERNS
Diagnoses Decline
Long-Acting Antibody
HIV Reservoir
Multidrug Resistance
Between 2014 and 2018, the annual HIV diagnosis rate among men who have sex with men declined by an average of 2.3% per year, according to a study from the Centers for Disease Control and Prevention. However, Black, Latino and younger gay and bisexual men saw small or no decreases. In 2014, there were 19,789 new HIV diagnoses among gay and bi men; that figure declined to 18,034 in 2018. Diagnoses fell by 4.8% per year on average among white gay and bi men overall but did not change for white teens or those age 55 and older. Diagnoses fell by 1.3% per year among Black men and did not change among Latino men overall, but in both groups, men ages 25 to 34 saw about a 2.0% increase. Rates of linkage to care and viral suppression increased in all racial and ethnic groups. The proportion of newly diagnosed gay and bi men who were linked to care rose from 66% in 2014 to 74% in 2018. The proportion who started treatment and achieved an undetectable viral load within six months rose from about half in 2014 to two thirds in 2018.
Trogarzo (ibalizumab), a long-acting monoclonal antibody administered by IV infusion every two weeks, can suppress HIV for nearly 10 years. Instead of attacking HIV directly, the antibody attaches to CD4 receptors on T cells and prevents viral entry. Trogarzo was approved in 2018 for people who have tried numerous prior therapies and have highly resistant HIV. A Phase III trial showed that 43% of participants who received Trogarzo plus other drugs selected through resistance testing had an undetectable viral load after six months of treatment. Researchers also went back and analyzed long-term outcomes among 12 men in an earlier Phase IIb trial who joined an expanded access program when that study ended. At the last follow-up visit, which occurred 7.8 to 9.5 years after initial trial enrollment, 11 had a viral load below 50, and all 12 were below 200. Although only a small number of people have used Trogarzo for that long, these findings show that it can be an effective component of long-term antiretroviral therapy for people with limited treatment options.
Assessing the HIV viral reservoir is akin to searching for a needle in a haystack, but researchers have developed a new method that could aid cure research. Even in people on effective antiretroviral treatment, HIV’s genetic blueprint remains sequestered in a reservoir of long-lived resting memory T cells, where it is impervious to the drugs. Antiretrovirals work only when the cells reactivate and start churning out new copies of the virus. Resting immune cells lack proteins on their surface that help scientists locate them. Researchers at the Gladstone Institutes in San Francisco developed a method to map the viral reservoir, using nearly 40 cell surface proteins to compare resting cells before and after reactivation. Analyzing millions of cells from eight people on antiretroviral treatment, the researchers discovered that reservoir cells in the blood, lymph nodes and gut tissue share some common features that could help scientists identify cells capable of producing new virus and develop cure therapies to target hidden HIV.
People with HIV whose virus is resistant to four classes of antiretroviral drugs have a higher rate of serious illness and death. Extensive drug resistance is most common among long-term survivors. Researchers analyzed data from 148 people with HIV in Italy who had documented viral resistance to nucleoside/nucleotide reverse transcriptase inhibitors, non-nucleoside reverse transcriptase inhibitors, protease inhibitors and integrase inhibitors. In this group, 38 people experienced a new major health event, including 18 AIDSdefining events, 32 non-AIDS events and 12 deaths, for a combined rate of 9.12 events per 100 cumulative years of follow-up. Six percent died within four years. People who experienced either AIDS-defining or non-AIDS health events had a nearly threefold higher risk of death. The study authors concluded that people with highly resistant HIV “have a high burden of disease with a worrying incidence of malignancies” and urged doctors caring for this population to provide close monitoring and access to innovative therapies.
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PREVENTION
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CARE AND TREATMENT BY BENJAMIN RYAN
MORE GOOD NEWS ABOUT INJECTABLE TREATMENT People with HIV who switch their antiretroviral (ARV) treatment to ViiV Healthcare’s long-acting injectable Cabenuva (cabotegravir/rilpivirine) may not have to take a four-week oral lead-in of the two drugs in the regimen. A recent clinical trial found no difference in outcomes based on whether participants went directly from taking Triumeq (dolutegravir/ abacavir/lamivudine) to receiving the monthly Cabenuva injections or first took four weeks of a daily pill form of the regimen before starting the injections. Cabenuva has already been approved in Canada. The U.S. Food and Drug Administration has expressed concerns about the regimen’s manufacturing process, which ViiV is seeking to address in hopes of securing approval in the United States; a decision is expected in late January. The trial enrolled about 560 people with HIV who had never been treated for the virus and were first started on Triumeq. Those who achieved a fully suppressed viral load at the end of 20 weeks were then evenly randomized to either stay on Triumeq or switch to Cabenuva. Those in the Cabenuva group first received a lead-in of oral versions of cabotegravir and rilpivirine. After at least four weeks of that treatment, they were switched to monthly injectable Cabenuva. At the two-year mark, those in the Triumeq group could elect to switch to Cabenuva and either start on the injectable regimen directly or first take the oral lead-in. After another six months, the study authors concluded that switching to Cabenuva was comparably effective between those who did and did not use the oral lead-in. Rates of adverse health events were also similar. Other recent research has shown that taking Cabenuva every other month, rather than monthly, is similarly effective.
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In a two-year study of Merck’s islatravir, the vast majority of people with HIV both achieved and sustained a fully suppressed viral load on the experimental antiretroviral. One of the study’s authors, Jean-Michel Molina, MD, of Hôpital Saint-Louis in Paris, notes that the highly potent islatravir, which is the first nucleoside reverse transcriptase translocation inhibitor, is currently being evaluated “for treatment and prevention of HIV, with daily, weekly and monthly regimens and also as a twice-yearly implant.” The recent study enrolled 121 people with HIV who had never been treated for the virus. They were randomized initially to receive either 0.25 milligrams, 0.75 mg or 2.25 mg of islatravir plus Pifeltro (doravirine) and lamivudine daily or to receive Delstrigo (doravirine/tenofovir disoproxil fumarate/lamivudine). Those in the islatravir groups who had a fully suppressed viral load at week 20 or later were taken off lamivudine. At week 96, a respective 86%, 90% and 68% of those who received 0.25 mg, 0.75 mg and 2.25 mg of islatravir had a fully suppressed viral load, as did 81% of those who received Delstrigo. During the first 48 weeks of the trial, six participants discontinued treatment due to not achieving and sustaining a fully suppressed viral load. This included two people each in the 0.25 mg and 0.75 mg islatravir groups, one in the 2.25 mg group and one in the Delstrigo group. Following the 48-week mark, one additional participant stopped treatment for this reason.
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Islatravir-Based Treatment Shows Promise
FATTY LIVER DISEASE AND DIABETES Among people with HIV who do not have viral hepatitis, having a higher body mass index (BMI) is associated with a greater risk of non-alcoholic fatty liver disease (NAFLD), and having type 2 diabetes is tied to a higher risk of advanced liver damage. Researchers at hospitals in Europe and North America conducted a study of liver biopsy samples from 166 people with HIV spanning 2001 to 2019. All these individuals had experienced unexplained increases in their liver enzyme levels or had other abnormal lab test results that suggested they might have liver disease. The study excluded people with hepatitis B or C viruses or cancer and those who drank to excess or who had any other major cause of liver disease. Biopsies indicated that 54% of the participants had NAFLD, and 49% had the disease’s more severe form, non-alcoholic steatohepatitis (NASH). Thirty-one percent had advanced fibrosis (scarring) of the liver, and 2% had cirrhosis. After adjusting the data to account for various differences in liver disease factors between the participants, the study authors found that having a higher BMI was associated with a 20% greater likelihood of having NAFLD. Having type 2 diabetes was associated with a more than threefold increased likelihood of having advanced fibrosis or cirrhosis. James Maurice, MBChB, a liver specialist at King’s College Hospital in London and the study’s lead author, says people with HIV who are overweight or have diabetes “should consider having liver investigations with their doctor,” noting that “as little as 5% weight loss can really reduce the harm to the liver.”
Among Women, HIV Is Tied to Chronic Health Conditions For women, living with HIV is associated with a higher prevalence of various other chronic health conditions. In a letter to the editor published in Clinical Infectious Diseases, Morgan Birabaharan, MD, of the department of infectious diseases and global public health at the University of California, San Diego, and his colleagues described their findings after comparing rates of chronic health conditions among women based on their HIV status. They analyzed data from a large electronic medical records system, assembling a study cohort of 10,590 HIV-positive women and 14.6 million HIV-negative women who were active in the database between 2015 and 2020. Compared with the HIV-negative women, the HIV-positive women had a higher prevalence of various chronic health conditions, including high blood pressure (49% versus 31%), diabetes (22% versus 12%), cardiovascular disease (13% versus 7%) and lung disease (36% versus 17%). All these conditions were more common among the HIV-positive women regardless of age. After adjusting the data to account for age and race, the investigators found that having HIV was associated with a respective 1.37-fold, 1.48-fold, 2.05-fold and 2.06-fold greater likelihood of having high blood pressure, diabetes, cardiovascular disease and lung disease. The study also found that women with HIV are developing these chronic diseases at younger ages than women who don’t have the virus.
BASICS
BY LIZ HIGHLEYMAN
GETTING PHYSICAL
F
or HIV-positive and HIV-negative people alike, physical activity is one of the keys to good health. You don’t need to go to a gym or buy special clothes or fancy equipment to exercise. Making the time to get some physical activity most days is an important part of a healthy lifestyle. Exercise has many benefits, including greater bone and muscle strength, increased endurance, higher energy levels, easier sleep, better mental health and even improved sexual desire and function. Along with eating a balanced diet, getting enough physical activity can help maintain a healthy weight, and it reduces the risk of comorbidities that occur at higher rates among people living with HIV, including cardiovascular disease, fatty liver disease, diabetes and cancer. Generally speaking, there are two types of exercise. Aerobic exercise gets your heart pumping and your breathing rate up. Examples include walking, running, bicycling, swimming and dancing. Strength-training exercise tones and builds muscles. Examples include weight lifting, workouts with resistance bands and exercises such as push-ups, sit-ups and leg squats. Experts recommend at least 150
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minutes of moderate-intensity aerobic activity or 75 minutes of vigorous activity per week as well as strength training activities at least two days per week. It’s best to spread this activity over multiple days—for example, a half hour of moderate exercise five days a week—rather than doing it all at once. The overall goal, according to the Centers for Disease Control and Prevention, is to move more and sit less throughout the day. People who do any amount of moderate to vigorous physical activity gain health benefits. If exercising is difficult due to physical limitations, even a small amount of activity is better than none.
Getting Started It’s important to find types of exercise you enjoy and activities that fit into your daily life so you’re motivated to do them regularly. Vary your activities to prevent boredom. Take advantage of the weather and the seasons. Many people enjoy participating in team sports, while others prefer solo activities. Yoga and tai chi—which promote strength, balance and flexibility—can be good options, especially for people who are older or have physical limitations. While gyms may be closed and indoor activities may be restricted due
to COVID-19, you can still do plenty of exercises at home or outdoors. For example, many exercise and yoga classes have gone virtual via Zoom. A personal trainer or fitness coach can help design an exercise program that’s right for you. Everyday activities such as walking the dog and gardening contribute to your total weekly physical activity. You can add more activity to your day by taking the stairs instead of the elevator or parking farther away from your destination and walking part of the way. Before beginning a new exercise regimen, check in with your health care provider, especially if you are older or have underlying health conditions. If you’re just starting out, build up slowly— for example, bicycling several more minutes each day or lifting a bit more weight each time you work out. Stretch and warm up at the beginning of each exercise session. Exercise is generally safe, but it’s important to know your limits. Pushing yourself too hard can lead to fatigue, muscle pain and increased risk of injury. Most people can find a type and level of activity that is safe and beneficial for them. Your body will tell you when you can step up the pace or need to slow down or take a break. ■
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The gym may be closed, but you can still exercise at home or outdoors.
ASK POZ WELLNESS TIPS FROM POZ.COM
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How do B cells and T cells fight disease? Several types of white blood cells play a role in immune responses against viruses and bacteria as well as cells that grow out of control and become cancerous. Macrophages, neutrophils and other first responders provide the initial line of defense, attacking invaders and releasing chemical messengers called cytokines that cause inflammation. Natural killer cells destroy virus-infected cells and tumor cells. B cells and T cells, two types of lymphocytes, are more specialized soldiers of the immune system. These cells recognize specific proteins called antigens on viruses, bacteria and cancer cells. B cells produce antibodies, which bind to antigens and either block viruses and bacteria from entering cells (neutralizing antibodies) or trigger additional immune defenses. The two main types of T cells are CD4 and CD8 cells. CD4, or helper, T cells coordinate the immune response. These are the primary targets of HIV. As the virus destroys CD4 cells, people become susceptible to opportunistic infections and cancers. Suppressing the virus with antiretroviral therapy protects CD4 cells, and monitoring CD4 counts—along with viral load—can show whether treatment is working. CD8, or killer, T cells (also known as cytotoxic T cells) directly attack invaders. Unfortunately, killer T cells are usually not able to keep HIV in check without antiretrovirals. Vaccines mainly work by stimulating the production of antibodies, but they can promote T-cell activity too. Both antibody and T-cell responses play a role in fighting SARS-CoV-2, the new coronavirus that causes COVID-19. Checkpoint inhibitors, a type of immunotherapy, unleash T cells to fight cancer. Genetically engineered T cells, known as CAR-T therapy, are used to treat cancer and are under study for HIV. —LH
WHEN WILL WE HAVE A COVID-19 VACCINE? Researchers have made good progress toward developing vaccines to prevent SARS-CoV-2, the new coronavirus that causes COVID-19. Experimental vaccine candidates have been shown to stimulate both the production of antibodies and T-cell immune responses against the virus in early studies. T-cell immunity is important because it may provide ongoing protection even if antibodies don’t last very long. In November, interim results showed that three vaccines—from Pfizer and BioNTech, Moderna and the National Institutes of Health, and AstraZeneca and the University of Oxford—appear to reduce the risk of symptomatic COVID-19 by 90% or more. The first two use a novel mRNA approach never before used in an approved vaccine, while the third uses a weakened adenovirus vector. Other vaccines are in Phase III clinical trials—the last step before approval if they are shown to be safe and effective. Although there is hope, experts predict that a vaccine will not be widely available for months. Once one or more vaccines are authorized, it will take time before they can be manufactured in large quantities and administered to all. —Liz Highleyman
Ask POZ is an ongoing section on POZ.com dedicated to answering general wellness questions. Go to poz.com/ask to read more answers, and email ask@poz.com to submit your questions!
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BrĂŠ Anne Rivera founded and directs the Black Trans Fund.
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BLACK LIVES STILL MATTER UPLIFTING SOCIAL JUSTICE AND HIV BY OLIVIA G. FORD
“As stark as the extraordinary racial disparities in the U.S. HIV epidemic is the fact that the epidemic’s marked impact in Black communities has often elicited so little response.” —from “We the People: A Black Plan to End HIV” by the Black AIDS Institute poz.com JANUARY/FEBRUARY 2021 POZ 23
zations should do severe work around what it truly means to say ‘Black Lives Matter’ but not have Black lives actually representing you.”
“I AM UNAPOLOGETICALLY CREATING SOMETHING FOR BLACK TRANS FOLKS. IT BRINGS ME JOY!”
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“Government agencies charged with ending the HIV epidemic have received billions of dollars, and organizations charged with providing vitally needed services have received millions of dollars. However, this 40-year effort has failed to reduce the level of HIV in the Black community significantly.” —from the Black South Rising agenda
“It is our responsibility to pressure institutions from the clinic to the government, from funders to the courtroom, to act in the service of racial equity and justice, and to divest from the interests of white supremacy.” —from “A Declaration of Liberation: Building a Racially Just and Strategic Domestic HIV Movement” by the HIV Racial Justice Now coalition Once upon a time, when she was new to HIV work, Venita Ray espoused the same behavioral and biomedical buzz phrases as her white peers. “‘It’s 100% preventable’ or ‘Testing! Know your status!’ All of that stuff may still be true,” she muses. “But I didn’t get that this is systemic.” Ray hadn’t made the connection between Blackness and the disproportionate impact of HIV when she was diagnosed in 2003. That happened when she began working with her local HIV planning council. She found herself at tables where no one looked like her. “We would talk about the data, and it’s always predominantly Black. But that’s the only part of Black that would come up in the conversation, like the data was neutral,” she says. By 2016, leading the development of an Ending the Epidemic (EtE) plan for her home city of Houston, Ray knew she couldn’t be party to the same conversations about testing and treatment, adherence and “the down-low” over and over again. She was explicit that Houston’s EtE planning would employ a social and racial justice approach. “That’s when I
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Amid the terror and confusion of a new pandemic in 2020 that had driven the world to stay inside, police continued to murder Black people. Fatal violence against Black transgender women was its own epidemic. A federal administration fanned these overlapping fires with its rhetoric, policies and nonresponse. And we had nothing else to do but watch. Uprisings across the globe were swift in response to the murders of George Floyd, Breonna Taylor, Dominique “Rem’mie” Fells, Tony McDade, Riah Milton and too many others, but they did not come out of nowhere. The slow, steady growth in public support for the Movement for Black Lives surged nearly as much in the two weeks following George Floyd’s killing as it had in the previous two years, according to New York Times polling. More people were engaging in conversations around shifting resources from police departments and investing them in services positioned to ensure true safety for all community members; in some cities, the idea gained momentum and yielded results. And this time, everyone—from massive corporations to celebrities to nonprofits—was sharing “Black Lives Matter” messaging. HIV organizations were no different in their clamor to signal support for this popular cause. Corporations want to make money, reminds Maxx Boykin, a seasoned movement organizer and current policy and organizing manager at the Black AIDS Institute, which is committed to centering Black experiences in all facets of the HIV response. “They will say ‘Black Lives Matter’ because it will continue to help them make more money and say that they’re on the right side of history.” He reserved particular critiques for HIV organizations that engage in what could be called performative allyship. “They’ll put ‘Black Lives Matter’ on everything, do a number of Black Lives Matter events; they’ll put Black folks in their ads and tell them to come to the AIDS Walk,” Boykin says. “But when it comes down to meaningful involvement of people with HIV, the meaningful involvement stops at meaningful involvement of Black people. All those organi-
discovered the total uncomfortability of talking about race,” she remembers. Ray struggled through innumerable conversations with well-meaning, uncomprehending white colleagues about the impact of historic and present-day racist oppression and trauma on Black people’s health outcomes. Progressive white people, as antiracist guru and White Fragility author Robin DiAngelo, PhD, has put it, can be particularly hard to talk to about race “because we tend to be so certain that it isn’t us,” DiAngelo told Teaching Tolerance magazine in 2019. “It doesn’t allow for humility, and, to be direct, it’s quite arrogant. So we don’t tend to be receptive at all.” These frustrating conversations spurred Ray to find others in the HIV community who also considered addressing the effects of racial inequity essential to the HIV response. She became a founding member of the HIV Racial Justice Now (HRJN) coalition in 2017. The group released the statement “A Declaration of Liberation: Building a Racially Just and Strategic Domestic HIV Movement” in November of that year. The document defined racial justice as “the collective practice of people of color and allies to identify, dismantle and heal from the many external and internal harms of structural and institutional racism.” Ray now had an HIVfocused tool to support what she had been saying in rooms for years. [ Editor’s note: The author of this article is a member of the HRJN Steering Committee and a coauthor of “A Declaration of Liberation.”] Ray introduced “A Declaration of Liberation” to the AIDS United Public Policy Council, an influential U.S. HIV policy group where she represented her employer at the time. Her boss pulled her aside before a meeting and asked her: “‘Are you showing up as an activist, an advocate, a woman living with HIV or a policy person?’” Ray says. “I was being asked to choose—I realize now. I was like, ‘How about all of them?’ But what was the question for?” Years of persistence by Ray and other advocates in pushing the philanthropy network Funders Concerned About AIDS (FCAA) to engage around racial justice issues recently led FCAA to form a Racial Justice Working Group, which was announced alongside data revealing that a scant 4% of total U.S. HIV philanthropy dollars support Blackfocused organizations. Ray was also among the group of Black HIV advocates in the U.S. South who spearheaded Black South Rising. Formed last year, the collective of activists has released a political agenda based on thorough feedback from across the region and provides incisive guidance for increasing and supporting Black HIV leadership. “Organizations, health departments and others have failed to serve our communities and have been allowed to operate without accountability,” reads Black South Rising’s statement announcing its launch. “If you work for us, you must answer to us.” For Ray, the grounding in unapologetic Blackness by the Movement for Black Lives “has given me the language
to be that same way,” she says. “I won’t let it go, and I know others won’t.” Since 2018, Ray has served as deputy director at Positive Women’s Network–USA, where a root-cause analysis and a justice lens are foundational aspects of the organization’s work. But even at a supportive group whose staff is largely drawn from the people it serves, racial dynamics are complex and can be exhausting. “Finding space to replenish and nourish ourselves is important,” says Raniyah Copeland, president and CEO of the Black AIDS Institute (BAI). The restrictions and innovations made necessary by COVID-19 led her to digitally summon her nationwide network of Black executive leaders in HIV to see how others were getting through this moment. “Even before this pandemic, for folks who do HIV work, our work every day is literally life and death,” Copeland adds. “That can be a lot.” Ray is among the director-level leaders who have found respite in the nascent digital network Copeland has created, which is more support group than strategy call. “Part of Black resistance is we get so much joy from being together,” Copeland marvels. Though the group first assembled informally, it fits well with BAI’s value of Black empowerment and its overall mandate to nurture Black leadership. Another of BAI’s functions has been to hold a Black mirror to the U.S. HIV community and expose its contradictions and biases. Copeland identified several levels at which anti-Blackness surfaces in HIV work, from played-down microaggressions by non-Black staff, which affect the climate for clients, to Black people working at an organization for years and never being promoted to the higher echelons of HIV leadership. “Most of the big HIV organizations across the country are led by non-Black people, even though Black people living with HIV make up almost half of people living with HIV in the United States,” Copeland says. “How did we get to a place where we have these multimillion-dollar organizations and then you have struggling Black- or brown-led organizations in the same city?” On National Black HIV/AIDS Awareness Day in 2020, BAI released “We the People: A Black Plan to End HIV.” “We will never end the epidemic without tackling the sources of Black people’s vulnerability to HIV,” the report reads. “Efforts to expand access to and utilization of breakthrough biomedical tools must be complemented by an equally robust commitment to reforming and, where needed, dismantling practices, systems and institutions that contribute to Black America’s health disparities.” The plan comprises four pillars, each one accompanied by practical and actionable recommendations, which institutions are encouraged to adopt as a framework to guide their work and adapt as needed. The four pillars are: 1. Dismantle anti-Black practices, systems and institutions that endanger the health and well-being of Black people and undermine an effective, equitable response to HIV in Black America.
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“Systems and organizations exhibiting racism and bias—intended or unintended—must change or be defunded.” —from the Black South Rising agenda “It is really important to fund organizations where Black queer and trans people are at the helm and make sure that those organizations are funded and well resourced for them to build power,” says Bré Anne Rivera. To that end, Rivera founded and directs the Black Trans Fund. An incubated project of the justiceThis page: focused Groundswell Fund, the Black Ashton Woods Trans Fund launched in January 2020, (top) and just before COVID-19 hit the United Toni-Michelle Wiliams; States. Rivera was surprised to find that opposite page: funds still rolled in to support commuVenita Ray nities highly impacted by shutdowns, which enabled her to continue fighting the violence, murder and systemic devaluing faced by Black people and particularly Black trans women. As a result, the Black Trans Fund is on track to award $500,000 in grants directly to organizations led by Black trans people on the ground. For many of these organizations, says Rivera, it was their first grant. They have even been able to connect with additional funding sources through their engagement with the Black Trans Fund. Under no illusion that this swell of funds will be available forever, she asks, “What are we doing now to make sure all of these organizations, initiatives and safety nets are going to be available in the future?” For Rivera, the challenges Black trans and queer communities face encompass “all the issues I feel are plaguing Black communities,” she says. “Queer and trans folks have really good experience with naming those issues, the impact and how folks can change them.” She cofounded Trans Sistas of Color Project (TSOCP) in Detroit in 2015 to support and uplift trans women of color in her home city. She is currently based in Albuquerque. “TSOCP is a people of color organization, but Black trans women did the work,” she says. “We did the fundraising, and we received a lot of the backlash.” Back then, she and her cofounders wanted to do mutual
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aid. Funders were loath to support such efforts. “There were so many questions [from funders] around ‘Why is it important? How do you know that people are using it for the stuff they say they’re going to use it for?’” she remembers. The term “mutual aid” (a voluntary reciprocal exchange of resources and services) has become familiar to millions more people in recent months as a result of ad hoc networks assembled, or repurposed, in response to the myriad desperate community needs created by the lack of a coordinated response to COVID-19. But for Black trans women, who have always found ways to survive and support one another outside of systems that do
(WOODS) COURTESY OF ASHTON WOODS; (WILLIAMS) COURTESY OF TONI-MICHELLE WILLIAMS/JOHNNIE KORNEGAY
2. Provide resources and services that address the fullness, richness, potential and expertise of Black people and mitigate social and structural factors that worsen health outcomes in Black communities. 3. Ensure universal access to and robust utilization of high-quality, comprehensive, affordable and culturally- and gender-affirming health care to enable Black people to live healthy lives in our full dignity. 4. Build the capacity and motivation of Black communities to be the change agents for ending HIV. “Unless you are specifically being antiracist, you are holding up racist systems and institutions,” Copeland concludes, adding that she feels this connection isn’t being made strongly enough. “Maybe that is one of the critical pieces needed to get us to the end of HIV.”
(RAY) COURTESY OF PWN-USA
not cater to and frequently harm them, the concept is not new. “When I was doing that intentionally for Black trans communities, there was so much pushback,” Rivera says. “Now it’s just like, ‘Everyone needs it, so it has to happen.’ COVID was a reminder that Black trans people were forwardthinking when it came to what it really means to support folks,” she says. For instance, Rivera notes, her docket of potential grants does not mention the epidemic level of violence directed at Black trans women in their own communities. What it does describe is meeting numerous key needs, such as housing and food, and these needs being met as a response to violence and a step toward liberation for Black trans communities and, by extension, all Black people. “I am unapologetically creating something for Black trans folks,” Rivera says of the Black Trans Fund. “I am happy about that. It brings me joy!” “Tackling multiple levels of stigma [and] criminalization and dismantling systems are possible, but only if Black leaders have the external and internal resources to do this work and find the best platform for their work.” —from the Black South Rising agenda POZ first interviewed Ashton Woods in 2016. Since then, as a founding organizer of Black Lives Matter Houston and someone involved with several other groups, he has been doing the work he has always done (“except it’s on steroids,” he says), ensuring that communities have what they need while pushing back on hostile policies. He has twice been a candidate for public office in Houston. He didn’t win, but winning wasn’t necessarily the point. “The whole idea of running was to educate people,” explains Woods, who ran on a simple criminal justice reform
platform. “They can’t just focus on the Trump in the White House but need to focus on the Trumps in the backyard.” By being a candidate who listened to people, was knowledgeable about their concerns and openly connected issues in his own life—such as living with HIV—to the challenges faced by voters, Woods reminded people in Houston that elected officials work for them and are accountable to them and that voting ought not to be just about representation for its own sake. “It doesn’t matter if that person is Black and gay,” Woods says. “You have people who are from marginalized communities who perpetuate hate.” Another important part of engagement around local races is teaching people who to hold accountable for particular issues and where to go with their concerns. “Things get passed into law or pass through committees because no one is there to say, ‘Hey, there’s a problem with this,’” Woods says. “Now, people are showing up everywhere.” Supporting leaders to be able to directly challenge individuals and institutions in power is what Toni-Michelle Williams does. In her five years as executive director of Atlanta’s Solutions Not Punishment Collaborative (SNaPCo), a project led by Black trans people, she built two leadership programs for Black trans and queer folks who have experienced violence, been incarcerated, engaged in sex work and/or are living with HIV. “By building the leadership of Black trans and queer folks, we are supporting our right and need and desire of belonging and interconnectedness,” Williams says. “We’re talking about teamwork, coordination and community—what it means to lead.” SNaPCo operates within an abolitionist framework, which means divesting from law enforcement, investing in wellness and restoration in communities, and envisioning and building toward a society without prisons. The organization also engages in “transformative campaigns that liberate everybody Black in Atlanta”—such as the successful push to close and reimagine the Atlanta City Detention Center— and campaigns that center Black trans and queer leadership. SNaPCo’s model of investing in leadership development “politicizes us in order to build the capacity for us to challenge cis people, straight people, white people and non-Black people to center us and to take many steps back so that our table has more equity and more voices and representation,” Williams says. “We have to have the capacity not just to sit at the table and listen and ‘be a part’ of the conversations but to lead those conversations,” Williams explains. “We know that a part of leadership is challenging people and calling people to be their best selves, even when it’s uncomfortable and even when it hurts.”
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Ray Welsh (left) and Xio Mora-Lopez
LOVE CO VID-19 FOR MANY PEOPLE LIVING WITH HIV, THE CORONAVIRUS PANDEMIC HAS ADDED TO THE CHALLENGE OF FINDING INTIMACY. BY TIM MURPHY PHOTOGRAPHY BY BILL WADMAN
THE LAST TIME XIO MORA-LOPEZ AND Ray Welsh saw each other in person before the COVID-19 crisis was Valentine’s Day. They ate at an Italian restaurant near a house for people living with HIV operated by Buddies of NJ that Welsh manages. She and Welsh met a few years ago at an HIV-related event. They bonded over their shared HIV-positive status, and Mora-Lopez wound up volunteering at Buddies of NJ. Shortly after that, they had their first meal together. They’ve been sharing meals ever since. They started speaking with each other by phone nearly every day during last spring’s COVID-19 stay-at-home orders. When summer arrived, they decided to see each other in person again, venturing to Asbury Park, New Jersey, Welsh’s favorite beachside town.
“We can start telling each other about a story or topic on a Monday and pick up the conversation on a Friday,” says Mora-Lopez of Welsh. “[During COVID-19], he’s been a lifeline and keeps me sane. We both have a sarcastic personality and look at things similarly.” “She’s very serious and knowledgeable but can also be a lot of fun,” Welsh says of Mora-Lopez. “She’s a witty, really great woman.” If it sounds like Mora-Lopez and Welsh have a romantic relationship, think again. Mora-Lopez is still getting over the death of her male partner four years ago—and Welsh, who has also been single these past few years, is gay. The bond they have may be strong—especially since the coronavirus pandemic struck—but it’s strictly platonic. “I told him, ‘I just want somebody to be a friend and go to the movies with,’” says Mora-Lopez. And Welsh says of her, “We don’t always agree, but there’s nothing hidden
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with her—and that’s why she’s my best friend.” DIFFERENT KINDS OF INTIMACY Mora-Lopez and Welsh have found intimacy and connection without sex. Having that special someone you can talk to, take a walk with, grab an outdoor bite with and even share a (masked?) hug with is just as important as “getting some” in this most extraordinary time. That said, COVID-19 has indeed complicated dating for people living with HIV. For many long-term survivors, this new pandemic is uncomfortably reminiscent of the days before biomedical HIV prevention, when the risk of transmitting the retrovirus hung over the possibility of nearly every intimate encounter, much as SARS-CoV-2, the novel coronavirus that causes COVID-19, does now. “For people living with HIV, the COVID era is just another burden we have to deal with,” says Perry Halkitis, PhD, a long-term HIV survivor. He is dean of the Rutgers School of Public Health in New Jersey and director of its Center for Health, Identity, Behavior and Prevention Studies. “But COVID does add yet another layer of negotiation and discussion around sex and intimacy,” Halkitis adds. “Safer sex was in some ways simpler with HIV— Xio Morajust wear a condom! But Lopez (left) and Ray even kissing is a COVID Welsh face risk, so it’s a whole differCOVID-19 ent thing.” together. Lots of folks have cut back their hookups during the new pandemic. Many people aren’t hooking up at all. And that has been challenging because, let’s face it, we all need nookie. As Madonna sagely points out in her song of the same name, it’s human nature! “I’m just not winning in this area,” says Atlanta’s Jericho Brown. In 2020, he won the Pulitzer Prize for poetry for his incredible collection titled The Tradition. “I’m not having any more one-night stands, and I’m not going anywhere I could meet a person.” Like many other people living with HIV, Brown says he isn’t even looking for dates or sex in the COVID-19 era. Some people say their love life was essentially nil before
“FOR PEOPLE LIVING WITH HIV, THE COVID ERA IS JUST ANOTHER BURDEN WE HAVE TO DEAL WITH.”
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COVID-19, never mind after. And others say COVID-19 stalled it. “I was dating this one guy I knew from college for a bit,” says Dakotah, a young woman from Charleston, South Carolina. “He lives in California, and I went out to visit him in February. When I got back, he was planning to come visit me in March or April, but then COVID hit hard,
and he couldn’t travel, so it just kind of fizzled out.” That scenario was echoed by Tomas Greiner of Daytona Beach, Florida, who leads a virtual support group for people living with HIV, like him. “I’ve heard from many members that meeting people and starting new relationships has become difficult, if not obsolete.” Especially for older folks, Greiner says, “technology is a struggle. They don’t always understand how it all works with social media.” Younger folks, he says, “are having it easier with dating apps, yet they’ve still cut back on encounters to limit exposure to COVID.” MARRIED BLISS? In the time of the new coronavirus, many say they wish they were in a relationship so they could enjoy that built-in companionship. And it’s true that some folks with HIV who have partners say the COVID-19 era has been good for them. Take Jimmy Mack and Brian Mott, two long-term HIV survivors in Southampton, New York. “COVID has only made our relationship stronger,” Mack explains. “As Brian always says, ‘We’ve been through worse!’ I adore my husband for his strength, as he’s been through a lot in 2020, and he did it with such grace and dignity. I also still think he’s the sexiest man I know, and I am so blessed to be married to him.” Mott concurs. “I rated our relationship a solid 10 before the new pandemic, and the pressures and fears of COVID have pushed us up to a 17 or 18!” Other couples say they haven’t had it so easy. In New York City, long-term HIV survivor Ivy Arce admits that being stuck in the house during COVID-19 with her husband and two kids has ultimately brought them all closer—but it has hindered “intimate time” between her and her hubby. “We’re just not in the mood because we’re tired and overwhelmed with politics and the world coming apart,” she admits. “There’s a lot of pressure with work, losing work, the kids worrying about bringing COVID into the house and affecting me. No one feels sexy in these moments. Sex is easier when things are less volatile.” Michael Crumpler, who also lives in New York City, says COVID-19 has brought challenges to him and his partner, who ordinarily have a happily open relationship. But these days, he says, “I’ve chosen not to engage in anonymous sex to reduce the likelihood of getting COVID. I’ve privileged my love for my partner over the need or desire to have the kind of sex I deeply enjoy. I’ve chosen not to sacrifice intimacy by behaving in a way that would make either of us insecure.” But that choice, Crumpler says, has made them realize that “we don’t have sex as much as we would like or need to” and that they must put more work into “understanding what each other’s sexual needs and fetishes are.” Still, he says, “I’ve become more comfortable in our relationship by experiencing what it’s like to be together without interruption.” CONNECTION AMID COVID-19 Some single folks are making new connections despite the latest pandemic. In Palm Springs, California, long-term HIV
survivor Jeff Taylor says that once COVID-19 started, he stopped hooking up with his regular group of sex buddies. “It took me back to the 1980s, when I shut down and stopped having sex,” he says. Recently, Taylor says, he hooked up again with one of those buddies—his first sex in six months. “It was glorious,” he exults. “A huge release.” Beforehand, he says, they talked through their COVID-19 risk until they both felt they were making a reasonable choice. “So now I’m starting to think about creating a ‘sex bubble’ with some of my more trustworthy buddies,” he says. In San Francisco, Ray (not his real name) recently fled New York City not only to avoid COVID-19 but to try to kick crystal meth. He admits that he ended up having methfueled sex with lots of new faces. Then, he says, he hooked up with someone he liked who not only wanted to quit meth as well but also needed a roommate after his previous one lost his job as a waiter due to COVID-19 and moved out. So Ray is moving in with him. “We’re very compatible sexually and both very lonely,” he says. “You have to get creative about a strategy for getting through this time. It’s about survival. And he drives a motorcycle.” They’re not alone in their approach. According to Halkitis, many folks with HIV are forming “sex pods” of one or two people to minimize COVID-19 risk, just as many people have created family or social pods. “Create a group of people whom you trust, and set up rules and expectations,” he says. “That’s a much better strategy than just porn. We all want human touch.” FIGURING IT OUT Meanwhile, outside Boston, a young woman named Casey says she had stopped dating pre–COVID-19 because she was tired of the mixed results she got after disclosing her HIV-positive status. But in August 2020, she wanted to start dating again, so she hopped on some apps, which led to FaceTime conversations with a few guys, then meeting up outside. Then she narrowed it down to one guy and invited him to her place. “I took a calculated risk,” she says. “Everything’s a COVID risk, including dating someone who’s HIV positive, right? I’d been getting COVID tested in school, and I knew my immune system was in good shape.” They’ve been meeting up once a week at her place. “I feel really good about how it’s going,” she says. “It’s improved my mood so much. Even just passing time on the phone with him makes me feel less alone.” As do those weekly get-togethers and near-daily phone chats between New Jersey’s Mora-Lopez and Welsh, which prove that, even though sex may be the cherry on top of intimacy and connection, it’s intimacy and connection we need first and foremost. “He keeps me grounded and able to say, ‘OK, we can get through this,’” says Mora-Lopez. And even more than hanky-panky, isn’t that really what everyone needs—now more than ever?
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HEROES BY ALICIA GREEN
While growing up in Los Angeles County, Raniyah Copeland, MPH, learned about Black liberation and the importance of making the world a better place for Black people. To that end, she vowed to ensure African Americans would live long and healthy lives. “My ancestors fought for me to have freedom that they never had,” says Copeland, age 36, president and CEO of the Black AIDS Institute (BAI) in Los Angeles. “There are still so many freedoms that Black people lose and disparities that you can see in every aspect of Black life.” Health disparities are a major problem within the Black community, Copeland notes, as African Americans are disproportionately affected by many chronic health conditions, including HIV. After earning a college degree in public health and African-American studies, Copeland got a job at Planned Parenthood, where she witnessed firsthand the impact of HIV on the Black community. “The experience of young Black gay men coming into the clinic and testing positive and feeling like it was inevitable was such a horrible thing,” Copeland recalls. “What a way to live and to feel like you’re going to have this outcome that impacts your health and life just because of who you are.” In 2008, Copeland, who is HIV negative, was hired at BAI, where she started out as a training and capacity building coordinator and was the group’s chief HIV prevention expert. While working, she earned a master’s degree in urban public health. Over the years, she was promoted to director of training and capacity building as well as director of programs. Then, in late 2018, she was named president and CEO. None other than BAI founder Phill Wilson said Copeland was the best choice to lead BAI into the future. “Overall, it’s been a really great experience,” Copeland says. “I’m grateful for the opportunity, the love I’ve received, the growth that I’m experiencing and the people who are riding along and who are catapulting the organization.” BAI works both locally and nationally. In Los Angeles, the institute serves and tests over 3,000 Black people annually. It provides health care services for underserved communities and programming specifically tailored to Black queer men. Across the country, BAI works with health agencies and organizations to develop culturally affirming services that help engage Black people in HIV care. “A lot of our strategy is engaging Black America directly,” Copeland explains. “There’s this whole big world that Black people live in, and connecting HIV to these systems is important to help frame our engagement in HIV and conversations around HIV.” In October, BAI launched the Black Voices Matter video discussion series featuring Black celebrities in an effort to raise HIV awareness in Black spaces where it was previously ignored or misunderstood. Copeland’s advice to the African-American community is simple: “We got us.” “There is a tribe of folks working every day to end HIV as we know it,” Copeland says. “We do this work because we love each other and ourselves.” ■
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Raniyah Copeland is on a mission to end the HIV epidemic in the Black community.
COURTESY OF THE BLACK AIDS INSTITUTE
Black Voices Matter
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