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H E A L T H ,
L I F E
&
H I V
1988 poster by the Silence = Death Project
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
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HUGO LIVING WITH HIV SINCE 1995 REAL BIKTARVY PATIENT
KEEP CONNECTING. 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 Hugo’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.
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CONTENTS
EXCLUSIVELY ON
POZ.COM #ADVOCACY
MAKE A DIFFERENCE 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.
D
#CRIMINALIZATION FIGHT HIV STIGMA
Opinions still vary on whether criminal law should apply to HIV disclosure, exposure and transmission. However, there is a growing consensus to make laws reflect current science. Go to poz.com/ criminalization for more on how you can get involved in reform efforts.
SCIENCE, NOT STIGMA
The science is clear: People who have an undetectable viral load can’t transmit HIV sexually. In addition to keeping people healthy, effective HIV treatment also means HIV prevention. Go to poz.com/undetectable for more.
D
POZ DIGITAL
READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET
30 YOUR VOTE MATTERS Find out where your state stands on HIV criminalization, HIV education and health care. BY JENNIFER MORTON
36 SPEAKING WITH A COLLECTIVE VOICE Latinx people living with HIV define their own agenda. BY JOE MEJÍA 4 FROM THE EDITOR
18 SPOTLIGHT
Fight the Power
Social media helps get out the vote.
6 POZ Q+A
20 ASK POZ
Young adult author Lucas Rocha discusses Where We Go From Here, his universal tale of HIV, romance, friendship and fun.
Health and wellness tips
10 POZ PLANET Virtual discussions about meth, HIV and Latino MSM • Achieving Together in Texas, Poderosos and The Wall Las Memorias Project • ETN aims to lower HIV risk among Latino youth • an HIV plan for America • watch 2020/40 HIV stories • Everyday
Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.
22 CARE AND TREATMENT
Rukobia OK’d for resistant HIV • Biktarvy is safe for seniors • Dovato approved as switch regimen • San Francisco’s speedy treatment initiation • U.S. adherence to meds is poor
27 RESEARCH NOTES
A new vaccine approach • ARVs and weight gain • gene therapy • COVID consequences
14 VOICES
28 BASICS
Charles Lyons of the Elizabeth Glaser Pediatric AIDS Foundation urges us to prioritize children in the COVID-19 response; AIDS United explains the importance of three recent Supreme Court decisions.
HIV and depression
40 HEROES Cristina Herrera provides support for the Latinx transgender community.
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. 247. POSTMASTER: Send address changes to POZ, 212 West 35th Street, 8th Floor, New York, NY 10001. Copyright © 2020 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: THE SILENCE = DEATH PROJECT. MUSEUM OF THE CITY OF NEW YORK. GIFT OF AVRAM FINKELSTEIN, 2019. (MARCH) COURTESY OF LATINX+; (GAVEL/BOOKS, BARBED WIRE AND MAGNIFYING GLASS) ISTOCK
D
#UNDETECTABLE
From left: Xavier Morales and Gonzalo Aburto promote LatinX+ at the 2019 Pride march in New York City.
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FROM THE EDITOR
Fight the Power
4 POZ OCTOBER/NOVEMBER 2020 poz.com
ORIOL R. GUTIERREZ JR. MANAGING EDITOR
JENNIFER MORTON DEPUTY EDITOR
TRENT STRAUBE SENIOR EDITOR
KATE FERGUSON SCIENCE EDITOR
LIZ HIGHLEYMAN EDITOR-AT-LARGE
BENJAMIN RYAN COPY CHIEF
JOE MEJÍA ASSISTANT EDITOR
ALICIA GREEN ART DIRECTOR
DORIOT KIM
This Latino-themed issue includes many other related stories, including the work of Cristina Herrera. She is the founder and CEO of the Translatinx Network. The group empowers community members to learn from their peers. Go to page 40 for more. Being Latino doesn’t require speaking Spanish. Nonetheless, the language is one of the largest unifying forces that binds Latinos together as a group. Having access to information in Spanish remains vital to many Latinos, including those of us living with HIV. To that end, the founders of POZ launched POZ en Español in 1997. The publication closed in 2003, but the need for HIV/AIDS information in Spanish never went away. Which brings us to the relaunch of POZ en Español as a pullout section inserted at the center of this issue. We are excited to relaunch POZ en Español to serve the needs of Spanish speakers today. The issue includes a Spanish-language version of the LatinX+ feature story as well as other relevant content from POZ in English. The cover of POZ en Español spotlights the founding members of LatinX+, which include two founders of POZ en Español. As they show us, HIV advocacy remains crucial. Vote!
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(ILLUSTRATION) ISTOCK; (GUTIERREZ) JOAN LOBIS BROWN
I
CAST MY FIRST VOTE IN 1988. I had turned 18 years old a few months before the election. My candidate for president didn’t win, but I was so proud. I finally exercised one of the most important rights we have as citizens. Much has changed since that election, for better and worse. One thing that remains constant is the urgent need for AIDS activism. The U.S. HIV epidemic is far from over. Advocacy for increased funding and against stigma and discrimination are as relevant now as they ever were, perhaps more so. Our cover image is a strong example of the connection between then and now. The Silence = Death Vote poster was made for the 1988 election by the Silence = Death Project, which created the original Silence = Death poster. The poster on our cover was the last one made by the group. The words on the Vote poster seem as if they could’ve been written today: “The issue is AIDS...where do the candidates stand on treatment research, housing, health care, discrimination? Your vote is a weapon...use it...we are at war.” Sounds all too familiar. The results of the 2020 election will have many long-term consequences. From climate change to social justice to health equity, there isn’t an issue that won’t be greatly affected. In that mix, of course, is HIV. To underscore that point, ACT UP New York created a continuing virtual action on ACTUPNY.com that includes information on where each state stands on HIV education, HIV criminalization and Medicaid expansion. Go to page 30 to read our adaptation to help you demand action and change. Speaking with a collective voice is also what a new grassroots organization seeks. Called LatinX+, the group formed in 2019. The network of predominantly HIV-positive activists from across the United States and Puerto Rico will address issues relevant to Latinos living with HIV. Go to page 36 to read how LatinX+ will help people living with the virus define their own agenda.
EDITOR-IN-CHIEF
LOWER YOUR VIRAL LOAD. AND MAKE UNDETECTABLE * A POSSIBILITY AGAIN. * Undetectable viral load is defined as fewer than 50 copies of HIV per mL of blood.
Ask your doctor about TROGARZO® – A breakthrough HIV-1 treatment designed specifically for those with treatment failures
TROGARZO.com
IMPORTANT SAFETY INFORMATION TROGARZO® can cause serious side effects, including changes in your immune system (Immune Reconstitution Inflammatory Syndrome), which can happen when you start taking HIV-1 medicines. Your immune system might get stronger and begin to fight infections that have been hidden in your body for a long time. This may result in an inflammatory response which may require further evaluation and treatment. Tell your healthcare provider right away if you start having new symptoms after receiving TROGARZO®. The most common side effects of TROGARZO® include diarrhea, dizziness, nausea and rash. These are not all the possible side effects of TROGARZO®.
Before you receive TROGARZO®, tell your healthcare provider: About all your medical conditions. About all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements. If you are pregnant or plan to become pregnant. It is not known if TROGARZO® may harm your unborn baby. Tell your healthcare provider if you become pregnant during treatment with TROGARZO®. If you are breastfeeding or plan to breastfeed. Do not breastfeed if you are receiving TROGARZO® as it is not known if TROGARZO® passes into breast milk. You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. 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.
TROGARZO® is a registered trademark of TaiMed Biologics Inc., under license to Theratechnologies Inc. © 2019 Theratechnologies Inc. All rights reserved.
719-01-01/20
WHAT IS TROGARZO®? TROGARZO® (ibalizumab-uiyk) is a prescription medicine that is used in combination with other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who: • have received several anti-HIV-1 regimens in the past, and • have HIV-1 virus that is resistant to many antiretroviral medicines, and • who are failing their current antiretroviral therapy. It is not known if TROGARZO® is safe and effective in children.
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POZ Q+A
BY TRENT STRAUBE
Clockwise from left: the novel’s cover, Brazil President Jair Bolsonaro, drag queens Pabllo Vittar and RuPaul, and Rio de Janeiro, the story’s setting
Young adult author Lucas Rocha weaves a universal tale of HIV, romance, friendship and fun!
M
EET THREE YOUNG GAY MEN IN RIO DE JANEIRO GOING through very different HIV experiences: Victor, who is HIV negative, feels betrayed and more than a little judgmental when his new boyfriend, Henrique, discloses he has HIV. For his part, Henrique becomes discouraged by the frequent rejections his status brings. And Ian is totally freaking out because his HIV test just came back positive—though after leaving the clinic, he meets the friendly Victor, who offers to introduce Ian to someone he knows who is living with HIV: Henrique. And so begins Lucas Rocha’s delightful young adult (YA) novel Where We Go From Here, recently translated into English by Scholastic imprint PUSH. Told from the alternating points of view of these three guys, the story follows them as they navigate school, careers, families, nightlife, love, HIV, the Brazilian health care and legal systems and one dangerously vindictive ex-boyfriend. POZ emailed Rocha, a librarian in São Paulo, about his universal tale. Our interview is lightly edited for clarity and length. How much did you know about HIV before writing the book?
I knew some things, but I learned a lot during the whole process, especially about U=U [Undetectable Equals Untransmittable] and PrEP [pre-exposure prophylaxis]. I had the initial spark to write Where We Go From Here after I read a medical article that asked people about their thoughts on HIV nowadays and found out that people are still very prejudiced. The first thing I did was to look for YA novels that portrayed discussions about HIV in a way that could be hopeful for the future, but I did not find many of them, so I decided to write one.
6 POZ OCTOBER/NOVEMBER 2020 poz.com
So research was my main concern. I had to be extra careful to deliver the proper information and to not spread misconceptions, improper terminology and/or false [ideas]. I went to treatment centers and talked with infectious disease doctors and patients. I also had to do a lot of rewriting after my agent, sensitivity and beta readers, my Brazilian editor, my translator and my U.S. editor all read the book. It was a collective work of which I am very proud. What is the attitude in Brazil toward the HIV and LGBT populations?
Ever ything depends on how much money you have, what gender you identify with and what is the color of your skin. We have to talk about intersectionality when we talk about the LGBTQ+ community because we have a lot of criticism from the heterosexual world, but we also have a lot of prejudices inside our own community. For instance, I’m a white-passing gay man in my country, so I have to deal with some issues regarding that, but I know that
(BOOK COVER) SCHOLASTIC/PUSH; (BOLSONARO) CC BY 2.0/MARCOS CORRÊA/PR; (VITTAR) YOUTUBE/PABLLO VITTAR; (RUPAUL) INSTAGRAM/@RUPAULSDRAGRACE; (RIO) ISTOCK
BOYS FROM BRAZIL
this is not the same when compared to what Black trans women have to deal with every day. Specifically, about HIV, there’s still a lot of prejudice in Brazil, within and without the LGBTQ+ community. The information is available in different places, but the ghost of the AIDS epidemic is still very alive. Are facts about HIV taught in school?
There’s not sex education in the majority of Brazilian schools. All that I learned about HIV when I was a kid was that it was an STD [sexually transmitted disease], a term we no longer use to talk about HIV. That was during a biology class followed by some weird documentary with lots of other gruesome STD pictures meant more to scare and convince us that condoms and abstinence were the only ways of protection. The media and the families are the main ones responsible for educating kids about HIV, but they also didn’t have the proper education. So it’s a very bad cycle. What were your goals for this book?
I wanted to deliver a happy story. It is important for HIV-positive people to know that first, they are not alone, and second, they can have beautiful and fulfilling lives. One of my main motivations was to tell a story not about survival but about thriving.
(ROCHA) COURTESY OF PUSH/VITOR MARTINS
Why write it from three points of view?
I wanted to talk about HIV with nuances, and having the voices of Ian, Victor and Henrique, each with a different perspective about HIV, helped me. That dynamic was fundamental to discuss different relations between people, the loneliness of an HIV-positive person, the first fears that show up, the new knowledge that a recently diagnosed person acquires and all the things that we, as a society, assume about the virus and the people living with it. Once the voices of the three of them were set in my mind, creating the world around them was very organic. Was any one character harder to write?
Yes! Victor was the most challenging— he’s the youngest one, the most privileged
and the one who has more to learn. He has his own journey to accept and understand what it means to be in a relationship with an HIV-positive person, and a lot of his prejudices and negative thoughts are very different from my own, but he also expresses a lot of what I used to think in my youth. Tell us about access to HIV health care in Brazil.
Brazil has one of the greatest universal treatment programs for HIV and AIDS in the world! Many people do not realize this, but the Brazilian public health care system is very efficient when it comes to HIV treatment, especially in a big city like Rio de Janeiro. The only thing you need is your ID and your public health card (which is free), and you can pretty much start your treatment.
Lucas Rocha
dies in an accident than that he tells him he is gay. At the same time that he publicly talks trash about LGBTQ+ people, he passes some bill allowing landowners to spread fire through the rainforest to raise cattle. That’s his pattern. What concerns me the most is not his barking but the clapping and endorsement of his electors. Finally, your novel is packed with U.S. pop culture references. Have you visited the states, and did you Americanize the book in the translation process?
Aside from some very specific Brazilian references, I didn’t change a lot. I guess that some people in the United States have the tendency to see Latin America as some sort of exotic place (there’s a lot more than samba, soccer, carnival and
“I wanted to talk about HIV with nuances—and to deliver a happy story.”
Does Brazilian law protect people who have HIV?
Yes, Brazil passed a clear law (n. 12.984) in 2014 that ensures some rights for HIV-positive people, such as education rights and the impossibility of being fired from their jobs because of their status and/or having their positive status disclosed if the intent is to publicly shame them. Your president seems very similar to President Donald Trump. Can you give us an update on the political situation in Brazil for the LGBT and HIV populations?
Jair Bolsonaro is the kind of president that barks a lot and targets specific communities to [distract from] his other intentions. He has already said that he pretty much prefers that one of his sons
the rainforest in Brazil), but at the end of the day, we share way more things than we may assume. The Brazilian gay community loves Lady Gaga, Madonna, RuPaul’s Drag Race and Cher, just like the U.S. gay community, the Mexican gay community, the Bolivian gay community, etc. But we also have our own queens, like Pabllo Vittar and Gloria Groove, which just adds even more good music to the mix. A lot of people in my country see the United States as the best place in the world, but that’s mainly because of cultural imperialism. I never went to the United States, but I grew up consuming a lot of TV shows, music, movies and books produced by U.S. artists as well as from many artists around the world, and that mix has built my references as a person and as a writer. ■
poz.com OCTOBER/NOVEMBER 2020 POZ 7
POZ PLANET
Clockwise from top left are a few of the participants in the “Act Now Against Meth” Zoom roundtable organized by The Wall Las Memorias Project: Cathy Reback, Richard Zaldivar, Guilmar Perdomo, Steven Shoptaw, Cheryl Barrit and Joey Flamboyant.
METH AND HIV AMONG LATINO MSM Virtual discussions in Texas and Los Angeles shed light on “the dark side of the rainbow.” Unlike recent decades, crystal meth use is often overlooked in today’s conversations about drug use linked to HIV risk (nowadays, opioids get most of the attention). But this doesn’t mean meth has disappeared. Far from it, especially when it comes to Latino men who have sex with men (MSM). So this summer, two community leaders—one in California and one in South Texas—used Zoom and YouTube webinars to draw much-needed attention to this issue. Richard Zaldivar, founder and executive director of The Wall Las Memorias Project, a Latino-focused health and wellness group in Los Angeles, moderated a discussion that included researchers, health care providers, government officials and advocates (you can watch the group’s “Act Now Against Meth” roundtable on its Facebook page). Together, the presenters made the case that methamphetamine continues to drive not just HIV rates but also the rates of syphilis, violent crime, hospitalizations and deaths. Similar topics arose in the Texas-based webinar “Where There’s Smoke There’s Fire: The Impact of Meth on HIV & Latinx Gay & Bi Men & MSM.” (You can view the in-depth two-hour presentation on YouTube.) That webinar was spearheaded by the HIV collaborative Achieving Together
10 POZ OCTOBER/NOVEMBER 2020 poz.com
along with advocate Oscar Lopez, who is located in the Rio Grande Valley along the Mexico border and is the CEO and founder of Poderosos, a newly launched HIV and Latino advocacy and capacity-building organization. What’s the link between meth, HIV and Latino MSM? In short, as the presenters in both discussions made clear, meth use often increases activities more likely to transmit HIV, such as sex with multiple partners and condomless anal sex. It’s also cheap and accessible. What’s more, Lopez explains, meth can offer a needed escape for Latino MSM. For example, they can forget about the discrimination, homelessness, poverty, anxiety, isolation and loneliness that often affect them and can be worsened by COVID-19 shutdowns and an anti-immigrant political climate. When it comes to sex, Lopez says, meth can lift inhibitions, allowing Latino men to enjoy the gay sex that their machismo-focused culture forbids. “It offers a kind of intimacy,” he tells POZ, “and the sex is like a porno come to life in your room.” Guilmar Perdomo, a community organizer with The Wall Las Memorias Project, says he has heard similar stories in community focus groups, with one person describing meth
(ROUNDTABLE) COURTESY OF ZOOM/THE WALL LAS MEMORIAS PROJECT; (MONUMENT) COURTESY OF THE WALL LAS MEMORIAS PROJECT; (METH AND HOOKING UP POSTERS) COURTESY OF PODEROSOS; (LOPEZ) COURTESY OF OSCAR LOPEZ/RIGO DAVILA
BY TRENT STRAUBE
as “the dark side of the rainbow.” These stories, he says, show how important it is to talk about crystal meth. HIV advocates first raised the alarm about meth nearly two decades ago. Much has changed since then—the advent of social media, hookup sites, access to porn—and a new generation needs to be educated. We also have powerful prevention tools: PrEP (pre-exposure prophylaxis) and U=U (Undetectable Equals Untransmittable). PrEP is a daily tablet that keeps HIV-negative people from contracting the virus; U=U refers to the fact that people with HIV who take meds and maintain an undetectable viral load cannot transmit the virus during condomless sex. But as Cathy Reback, PhD, of Friends Research Institute pointed out in one of the webinars, although PrEP and U=U have helped lower transmission among meth users, these biomedical interventions are not a silver bullet. That’s because meth use impedes adherence and disrupts the user’s concept of time. No matter how effective the meds are, they’re useless if not taken. What’s more, many Latinos don’t have access to PrEP and HIV treatment, especially those who live in rural areas. Zaldivar says his LA-based group is following up with smaller group discussions and will host more Zoom roundtables in the fall. “We’ve wanted to roll out a [meth] campaign for the a more aggressive sex drive, making us more susceptible last few years,” he tells to HIV and other sexually POZ, “but we’re not in transmitted infections. normal times now, and we want to get some recommendations from the community first.” “We need to show Latinx gay and bisexual men that we care about them,” said Jeff Crowley, MPH, of the HIV Policy Project at the O’Neill If you PnP, know your tricks and treat them well. 1. Get tested every 3 months to know your HIV/STI status. Institute, during the Texas 2. Use a lot of lube whether you top or bottom. 3. Get on PrEP, stay on PrEP and tell others about PrEP. webinar. “That requires us 4. If you are HIV positive, get and stay in HIV specialized care. to deal with these tough issues, including drug use and sexual pleasure. But that’s how we’ll ultimately produce healthy communities and really make progress toward ending the HIV epidemic.”
Spread the Word Meet three HIV groups spearheading talks about meth and Latinos. ACHIEVING TOGETHER A collaboration of various stakeholders in Texas, this movement aims to end the HIV epidemic in that state by lowering transmissions, increasing viral suppression, ending health disparities and supporting a stigma-free climate. Visit AchievingTogetherTX.org for an overview of HIV in Texas and details about the plan to end HIV. PODEROSOS As its tagline announces—“From the Borderlands to Washington, DC”—this group advocates for the health of Latino LGBT and HIV communities along the MexicoTexas border, and it helps other organizations do the same. Launched in February and led by Oscar Lopez, Poderosos offers grant-writing assistance, capacity building, harm reduction programs and more in a sexaffirmative, frank and culturally appropriate tone. Visit Poderosos.org to download meth awareness posters and COVID-19 messages, such as “Practice social distancing. Get off to porn instead of hooking up.”
To talk to someone who can tell you how to protect yourself or parTy safer, ask for:
Or call the Substance Abuse and Mental Health Services Administration (SAMHSA) National Helpline 1-800-662-HELP (4357) It’s free, confidential, and available 24/7.
Oscar Lopez is CEO of Poderosos, which offers posters like the one above.
THE WALL LAS MEMORIAS PROJECT By offering community health programs, substance abuse prevention, support groups and other wellness services, this organization helps LGBT people, Latinos and other underserved communities in Los Angeles. Founded and led by Richard Zaldivar, the nonprofit is also the custodian of The Wall Las Memorias AIDS Monument (pictured) in Lincoln Park. It includes granite panels with names of those lost to the epidemic and large wall panels that depict life with AIDS in the Latino community. Dedicated in 2004, the monument is now undergoing renovation.
poz.com OCTOBER/NOVEMBER 2020 POZ 11
POZ PLANET BY TRENT STRAUBE
EDUCATE, TEST AND NAVIGATE A program to reduce HIV risk among Black and Latino youth “Over the past number of years, we have seen alarming increases in new HIV diagnoses in Latinx communities throughout the United States, but some vulnerable populations are being hit the worst, including young sexual and gender minority Latinx,” says Vincent Guilamo-Ramos, PhD, a New York University professor and nurse practitioner who focuses on the reproductive and sexual health of youth. He points out that while overall HIV rates in the United States dropped 7% between 2014 and 2018, they increased 1% among Latinos— and 5% among gay and bi Latino men younger than 35. Thanks to a $1 million grant from the federal government, Guilamo-Ramos is launching a program titled Educate, Test, and Navigate (ETN) in the South Bronx that aims to reduce HIV risk and substance misuse among Black and Latino adolescents and young adults. The overarching idea, he explains, is to take the education and testing services usually found in clinical settings, transplant them Vincent into underserved communities and then Guilamo-Ramos, navigate, or guide, people into more PhD, leads ETN.
intensive services when needed. For example, the educate part of the program will work within the community to recruit peer advocates and promote role-model stories about people who have changed their HIV-risk behaviors, including drug use. The grant is awarded by the Substance Abuse and Mental Health Services Administration, a division of the Department of Health and Human Services, and is part of the federal plan to end HIV in America (see the story below). The Bronx is an ideal place to launch the ETN program. It’s one of the 48 counties in the nation with the highest numbers of new HIV cases, and HIV rates are especially high in the South Bronx, where 40% of all residents are younger than 25. What’s more, Latino youth are at heightened risk for HIV, Guilamo-Ramos says, ticking off many of the reasons: The HIV crisis among that community is not discussed; HIV prevention efforts aren’t reaching Latinos; those living with HIV have lower rates of engagement in care and are less likely to maintain undetectable viral loads; and Latinos experience multiple types of stigma, including homophobia and racism.
AN HIV PLAN FOR AMERICA Last year, President Trump launched the federal initiative “Ending the HIV Epidemic: A Plan for America.” Its goal is to lower HIV rates by 75% across the nation by 2025 and by 90% by 2030. The plan aims to accomplish this by focusing on four pillars of action: 1. Diagnose all individuals living with HIV as early as possible after infection; 2. Treat HIV rapidly and effectively so that people achieve long-term viral suppression; 3. Prevent at-risk individuals from becoming HIV positive, including through the use of pre-exposure prophylaxis (PrEP); and 4. Rapidly detect and respond to emerging HIV clusters to further reduce new transmissions. The U.S. plan concentrates federal prevention and treatment efforts on HIV hot spots across the country. Specifically, this includes the 48 counties that together with Washington, DC, and San Juan, Puerto Rico, account for 50% of new HIV cases in recent years. It also includes seven rural states with high HIV rates: Alabama, Arkansas, Kentucky, Mississippi, Missouri, Oklahoma and South Carolina. In addition to geographic targets, the initiative uses molecular surveillance—the tracking of HIV data on
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The HIV plan focuses on these hot spots and rural states.
individuals—to determine where the virus is spreading and where to steer resources. The U.S. plan also funds research and programs (see the story above) that address communities at higher risk for HIV, such as gay and bisexual Latinos and transgender Latinas.
(GUILAMO-RAMOS) COURTESY OF NYU SILVER SCHOOL OF SOCIAL WORK (PIN) ISTOCK; (PLAN MAP) COURTESY OF HIV.GOV
Details of the federal initiative to end the epidemic
WATCH 2020/40 HIV STORIES Meet Latino activist Pedro Zamora and many others. As we approach the 40th anniversary of HIV next year, the National AIDS Memorial launched a digital storytelling platform called 2020/40 that collects multimedia stories from 40 years of the epidemic. Visit AIDSMemorial.org, where a new story is uploaded each week. Included in the mix are advocates, artists, parents, caregivers and politicians. You can learn about genderdefying disco legend Sylvester and “the Cemetery Angel” Ruth Coker Burks, who From left: cared for hundreds of dying gay men Sylvester, shunned by their families (she buried Pedro Zamora many of them in her own family cemetery and Ruth in Hot Springs, Arkansas). And you can Coker Burks discover Pedro Zamora, the gay Latino star of MTV reality show The Real World who died of AIDS-related illness shortly after the show aired in 1994 (and who was on the cover of POZ that same year). These stories remain eternally inspiring.
EVERYDAY October
These dates represent milestones in the HIV epidemic. Visit poz.com/aidsiseveryday to learn more about the history of HIV/AIDS. BY JENNIFER MORTON
(COMPUTER AND RINGS) ISTOCK; (BURKS) YOUTUBE/ATTITUDE AWARDS; (FAUCI) COURTESY OF NIH; (MUELLER) EDGEWISE: A PICTURE OF COOKIE MUELLER
5
November
2
During the vice-presidential debate between Dick Cheney and Senator John Edwards, moderator Gwen Ifill mentions the INCREASING RATES OF AIDS-RELATED DEATHS AMONG BLACK WOMEN in the United States and asks each candidate what role the government should play in ending the epidemic. (2004)
ANTHONY S. FAUCI, MD, is named director of the National Institute of Allergy and Infectious Diseases. (1984)
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Actress and writer COOKIE MUELLER, who starred in many of the early films of John Waters, dies of AIDSrelated causes at age 40. (1989)
NATIONAL LATINX AIDS AWARENESS DAY
COMMON THREADS: STORIES FROM THE QUILT premieres on television. It won the Academy Award for Best Documentary Feature in 1990. (1989)
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Serodiscordant couple SHAWN DECKER AND GWENN BARRINGER get married in Charlottesville, Virginia. (2004)
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THE WORLD HEALTH ORGANIZATION kicks off the first meeting to assess the global AIDS crisis and to encourage collaboration between the nations affected by the disease. (1983)
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VOICES BLOGS AND OPINIONS FROM POZ.COM
FOR THE KIDS
L
ast year, 150,000 children became newly HIV positive, missing the 2020 target of 20,000 new cases globally. Only 53% of the 1.8 million children with HIV have access to medications they need—much lower than the 67% of adults on treatment. Without meds, half of HIV-positive children will die before age 2. AIDSrelated deaths worldwide have declined over the past decade, but they’ve increased for adolescents. We talk about bringing the successes of HIV/AIDS to COVID-19, but we must ensure that we don’t repeat our failures. It’s clear that children were not a priority in the national response to AIDS in the late 1980s and early ’90s. Misconceptions that certain populations weren’t heavily impacted wrongly led to children going without help, including age-appropriate medicines. The late activist Elizabeth Glaser saw the lack of resources for HIV-positive children when her daughter, Ariel, and son, Jake, were diagnosed with the virus in 1985. Ariel died at 7 years old in 1988 of AIDS-related illness. Glaser feared Jake would soon meet the same fate and began aggressively advocating for new medications and legislation to help children and raising millions for pediatric HIV/AIDS research. She and her friends Susie Zeegen and
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Susan DeLaurentis organized trailblazing think tanks, bringing together the best minds in immunology to solve the HIV puzzle. They also funded cutting-edge research and collaborated with the National Institutes of Health (NIH) and other leading institutions. This laid the groundwork for better pediatric HIV treatments and helped establish protocols to prevent motherto-child HIV transmission, eventually leading to the virtual elimination of such transmission in the United States. While the policy changes driven by Glaser’s work were ultimately profound, they were far too slow. Congress eventually passed the Best Pharmaceuticals for Children Act in 1996, encouraging the pharmaceutical industry to complete pediatric studies by providing an additional six months of drug patent exclusivity. The Pediatric Research Equity Act, passed in 2003, requires that drug companies study appropriate formulations of their products for children. Thousands of children contracted HIV and hundreds died before we reached acceptance of a simple truth: Children are not small adults. Diseases— and drugs—affect children uniquely. Therapies must be studied specifically for use in children, who require specialized dosing, indications of use, safety information and data on efficacy.
Studies show that children generally have been mildly affected by COVID-19, but the emergence of severe pediatric multisystem inflammatory syndrome (PMIS) across Europe and the United States demonstrates the need for ongoing vigilance across all age groups. As with HIV in the 1980s, immediate investment in research is paramount to understand causes and risk factors and to identify treatments. The full spectrum of PMIS is not yet clear: Does the current geographical distribution reflect a true pattern, or is the condition not being recognized elsewhere? Have we truly learned from our failures to address HIV in children? And, if so, will we apply those lessons to do better for children amid COVID-19? Glaser famously stated, “Actions are what save lives.” We cannot afford to repeat the early history of pediatric AIDS with COVID-19—otherwise, children will be left behind yet again. We need U.S. leadership, the NIH and the Food and Drug Administration to take urgent action and the World Health Organization and others to prioritize pregnant women and pediatric populations in key COVID-19 research, clinical studies and eventual vaccination strategies. Only with adequate data and timely information can we address the specific needs of these populations. ■
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In an opinion piece titled “Prioritizing Children in the COVID-19 Response,” Charles Lyons, president and CEO of the Elizabeth Glaser Pediatric AIDS Foundation, urges us to learn from HIV. Below is an edited excerpt.
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VOICES BLOGS AND OPINIONS FROM POZ.COM
FROM THE COURT Discrimination in Employment Boystock v. Clayton In a 6–3 decision, the Supreme Court of the United States (SCOTUS) extended certain protections to LGBT individuals under the Civil Rights Act. Specifically, Justice Neil Gorsuch wrote in the majority opinion that sex-based employment discrimination protections extended to sexual orientation and gender identity. The majority opinion also noted that Title VII can be applied in sex discrimination not only in groups but also toward specific individuals. This case involved a statutory interpretation of Title VII rather than constitutional law, meaning that the courts interpreted legislation rather than what is contained within the Constitution. AIDS United has long engaged in advocacy around the rights of LGBT individuals in employment. We look for ward to seeing how this case influences protections for LGBT people in all areas. We also owe a tremendous debt of gratitude to the late Aimee Stephens, one of the plaintiffs in these joint cases. Sex-Work Stigma U.S. Agency for International Development v. Alliance for Open Society International The Supreme Court also ruled on a
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disputed aspect of a 2013 case, determining that foreign-based HIV/AIDS organizations must still officially denounce sex work to receive U.S. funding. Seven years ago, the Court ruled that requiring HIV groups working outside the United States (but U.S.-registered and -based) to denounce sex work as a requirement of receiving U.S. funding was a violation of the First Amendment right to freedom of speech. The Alliance for Open Society International (AOSI) won that case, which allowed it to continue its HIV/AIDS work with U.S. funding abroad without an organizational statement “explicitly opposing [sex work] and sex trafficking.” However, until this decision, it was unclear if foreign-based grantees and other AOSI partners would have the same protections. In a 5–3 decision (with Justice Elena Kagan recusing herself because of her work on the issue in a previous role), the Supreme Court ruled that these foreign-based organizations were not subject to the same free speech protections and that the U.S. government could require denunciation of sex work from them as a contingent for funding intended to end HIV/AIDS abroad. AIDS United contributed to an amicus curiae brief supporting the plaintiffs. We will continue supporting decriminalization and destigmatization of sex work.
Abortion Care Rights June Medical Services v. Russo This decision bolsters protections for abortion care rights—for the moment. In a 5–4 decision, Supreme Court justices chose to strike down a Louisiana law requiring that doctors who perform abortions have admitting privileges in nearby hospitals, allowing the state’s three abortion clinics to remain open. The case was almost identical to one decided by SCOTUS in 2016, Whole Woman’s Health v. Hellerstedt, in which Texas legislators also sought to institute an admitting privileges law. Because of the precedent set in that case that this type of law was an “undue burden” on people seeking abortion care, reproductive justice advocates were again able to prevail. While this case is a win for reproductive health, advocates must stay engaged, as it was decided not on the merits of bodily autonomy but on court precedent, as Chief Justice John Roberts articulated in his concurring opinion. Reproductive justice advocates warn that even though this decision was a win, it should be a wake-up call. AIDS United will continue to advocate in federal avenues for the civil and human rights of all people as the only path toward ending the HIV epidemic in our nation and world. ■
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In a blog post titled “How Recent SCOTUS Rulings Will Impact the HIV Community,” AIDS United explains the importance of three Supreme Court decisions, which the group views as two wins and a loss. Below is an excerpt.
If you're living with HIV, are taking your meds, and experiencing decreased energy and unintentional weight loss, ask yourself the following questions: Have you experienced weight loss? Have you recently lost weight without trying? Do any changes in your weight negatively affect your health and how you feel? Do your clothes fit more loosely than normal due to unintentional weight loss? Have friends, family, or coworkers noticed any changes in the way that you look based on changes in your weight? Do you have a loss of physical endurance or energy associated with unintentional weight loss? Are any activities more difficult to perform? Are you exercising less? Do you need to rest more often? Do you frequently feel tired after certain activities? If you answered “yes” to any of these questions, bring this sheet to your healthcare provider to discuss whether you have HIV-associated wasting. Treatment options are available. Together you can discuss the next steps. To learn more about HIV-associated wasting, visit: IsItWasting.com
EMD Serono is a business of Merck KGaA, Darmstadt, Germany ©2019 EMD Serono, Inc. US-SER-0815-0011a(2)
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SPOTLIGHT BY JOE MEJÍA
Vote 2020 Election 2020 is fast upon us. As with any electoral contest that also requires constituents to choose the next president, a lot is at issue. But amid the COVID-19 pandemic that plagues the world and has hit the United States particularly hard, the stakes are even higher. The new coronavirus has killed nearly 200,000 Americans, cost 36 million people their jobs and resulted in the loss of health insurance for more than 5 million individuals. That’s not to mention the 28 million people who had already been living without medical coverage. Add to this the fact that COVID-19 has proved more lethal among Black and Latino communities, which are already disproportionately affected by HIV/AIDS and other illnesses, and the situation is dire indeed. For these reasons, we must vote to preserve the health insurance of millions of Americans under the Affordable Care Act (ACA). To help get out the vote, HIV/AIDS and human rights groups have taken to social media to remind us of the various ways we can cast our ballots safely despite threats to our health and our right to vote. (For example, in many states, you can vote in person before Election Day, November 3.) While it’s true that our health care system overall is in need of an overhaul, dismantling the ACA, as some Republican candidates have tried to do, would do nothing to eliminate the inequities brought to light by the COVID-19 crisis or to protect the most vulnerable among us.
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ASK POZ WELLNESS TIPS FROM POZ.COM
When should I start colon cancer screening? The American Cancer Society recommends that people at average risk for colorectal cancer should start regular screening at age 45. Individuals with risk factors, such as a family history, can discuss earlier screening with their providers. Adults in good health should screen until at least age 75. Options include colonoscopies every 10 years, flexible sigmoidoscopy (an exam of the lower part of the colon and rectum) every five years, stool DNA tests (such as Cologuard) every three years or tests for blood in the stool (such as fecal immunochemical testing, or FIT) every year. Positive stool tests should be followed up with a colonoscopy. Colonoscopies and sigmoidoscopies require a special diet and preparation to empty your bowels. For stool tests, you usually collect a fecal sample using a kit and send it to a lab. All these methods can detect early colon cancer or precancerous changes known as polyps. The best test is the one you actually use! —LH
WHAT IS LIPODYSTROPHY? Lipodystrophy refers to two conditions: lipoatrophy, or fat loss, and lipohypertrophy, or fat accumulation. Lipoatrophy involves the loss of subcutaneous fat under the skin, usually in the face, arms, legs and buttocks. It is most often seen in long-term survivors who took older HIV drugs, such as AZT (Retrovir or zidovudine) and d4T (Zerit or stavudine). Lipohypertrophy typically involves fat gain in the abdomen surrounding the internal organs, which leads to a hard belly. Both women and men may experience breast growth, and some people develop a fat pad on the upper back known as a “buffalo hump.” In some cases, fat buildup can cause discomfort, limit movement or interfere with sleep. Abdominal fat also raises the risk for heart disease and other health problems. What’s more, it can lead to emotional distress and discourage adherence to HIV treatment. Lipoatrophy is difficult to reverse, but facial fillers can improve appearance. HIV-related fat gain may not respond to changes in diet or exercise, but a medication called Egrifta (tesamorelin) may help. —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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Lung cancer screening using low-dose CT scans can detect cancer early, when it is easier to treat. The National Lung Screening Trial found that those who received annual scans had a lower risk of dying of lung cancer. But a recent study found that less than 2% of eligible people receive the recommended tests. The United States Preventive Services Task Force recommends yearly lung cancer screening for people ages 55 to 80 who have a total smoking history of at least 30 pack-years—for example, smoking one pack of cigarettes a day for 30 years—and still smoke or have quit within the past 15 years, but a planned revision would lower the starting age to 50 and the pack-years to 20. People with HIV may develop lung cancer at younger ages, so they may benefit from screening sooner. —LH
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Should I get screened for lung cancer?
UNLIKE OTHER VIRUSES ENDING HIV IS AT OUR FINGERTIPS
We’re closer than ever to flatten the HIV curve. With new effective ways to prevent, treat, and stop its spread, we can end HIV forever.
Care To Join Us? OCTOBER 15 TH IS N ATION AL L ATINX AIDS AWARENESS DAY
•
nlaad.org
•
#nlaad
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CARE AND TREATMENT BY BENJAMIN RYAN
Biktarvy Is Safe for Seniors
RUKOBIA OK’D FOR RESISTANT HIV The Food and Drug Administration (FDA) has approved ViiV Healthcare’s Rukobia (fostemsavir) for people with HIV that is resistant to numerous antiretrovirals (ARVs). In particular, the drug—a new type of entry inhibitor—was green-lit for those who have used many previous ARVs and whose current regimen is not working due to drug resistance, personal inability to tolerate the medications or safety problems. Rukobia’s approval was based on findings from a Phase III clinical trial that included people who had taken numerous ARVs over time and who had HIV that was resistant to multiple drugs. They were treated with Rukobia plus an ARV regimen designed to work as well as possible. Sixty percent were able to achieve an undetectable viral load within two years. Rukobia also led to a substantial rise in CD4 cells during that time. The treatment was generally safe and well tolerated. “The FDA’s approval of Rukobia, the first-ever attachment inhibitor, marks a significant milestone in the treatment of HIV patients with heavy treatment experience,” says longtime HIV physician Anthony Mills, MD, CEO of the Men’s Health Foundation in Los Angeles. “While most patients living with HIV are thriving on current therapies, patients with long and complex treatment histories may develop strains of the virus that are difficult to fight.”
One year after 140 people age 65 and older switched their antiretroviral (ARV) regimen to Gilead Sciences’ Biktarvy (bictegravir/tenofovir alafenamide/ emtricitabine), the pooled results of four studies found a high rate of full HIV suppression and a low rate of adverse health events. Upon entering the study, 22% of the seniors had diabetes, 55% had high blood pressure, 24% had cardiovascular disease and 59% had abnormal blood lipids. All had a fully suppressed viral load thanks to different ARV regimens. Forty-eight weeks after making the switch to Biktarvy, 92% of the participants had a fully suppressed viral load. None experienced virologic failure. Biktarvy proved safe and well tolerated: 8% of the seniors experienced mild or moderate drug-related adverse health events, and just 3% discontinued the regimen due to such events. “As the number of older adults living with HIV grows, it’s critical to optimize therapy to fit the unique needs of this key population, including those with chronic conditions who may be on multiple medications,” says lead author Moti Ramgopal, MD, of Midway Immunology and Research Center in Fort Pierce, Florida. “Adults 65 years and older who switched to Biktarvy maintained viral suppression without a significant impact on lipid levels such as cholesterol, weight or interactions with other drugs they may be taking.”
Dovato Approved as Switch Regimen The Food and Drug Administration has expanded its approval of ViiV Healthcare’s two-drug antiretroviral regimen Dovato (dolutegravir/lamivudine) to include people with a fully suppressed viral load who switch from a different HIV regimen. Previously, the regimen was approved only for those starting HIV treatment for the first time. The expanded approval was based on the findings of a Phase III study that enrolled people who had maintained an undetectable viral load for six months on a regimen of at least three antiretrovirals that included the drug tenofovir alafenamide. Some of the participants were randomized to switch to Dovato while the others stayed on their original regimen. A year later, the two study groups had similarly high rates of full viral suppression. The safety results for those who received Dovato were similar to those in previous studies of the two-drug tablet among those starting it as their first regimen.
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San Francisco’s Speedy Treatment Initiation The San Francisco Rapid ART initiative, which aims to quickly start people with HIV on antiretroviral (ARV) treatment following their diagnosis, has shown considerable progress in narrowing the time between an HIV diagnosis and the achievement of an undetectable viral load. The plan, launched citywide in 2015, defines rapid initiation as having a first medical appointment within five days of being diagnosed with HIV and starting ARV treatment the same day as that appointment. The ultimate goal of the initiative is to get HIV-positive people to start treatment the same day as their diagnosis. Researchers analyzed data on 1,354 people newly diagnosed with HIV in the Bay Area city between 2013 and 2017. Eighty-nine percent were men, and the majority were people of color. During the study period, the median time between an HIV diagnosis and the first visit to a clinician for medical care for the virus declined by 44%, from nine days in 2013 to five days in 2017. The median time between that first medical visit and the initiation of ARV treatment declined by 96%, from 28 days to just one day. By 2017, 28% of those newly diagnosed with HIV started treatment rapidly. The median time between an HIV diagnosis and the first undetectable viral load test result declined by 48%, from 145 days to 76 days. “[ARV treatment] at diagnosis can and should be offered to everyone newly diagnosed with HIV,” says the study’s lead author, Oliver Bacon, MD, MPH, of the San Francisco Department of Public Health. “Not doing so perpetuates widening inequity in outcomes.”
ALL IMAGES: ISTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)
Adherence to HIV Meds in U.S. Is Poor Only perhaps a quarter of people living with HIV in the United States are adherent to, or faithfully take, their daily antiretroviral (ARV) regimen. “We know that poor adherence is one of the ways patients can develop HIV drug resistance, which can cause HIV medications to stop working and even limit future treatment options,” says the lead author of a new study on ARV adherence, Wing Chow, PharmD, MPH, of Janssen Infectious Diseases. “Our study showed that low education, poverty and unemployment, as well as female gender and nonwhite race, were associated with poor adherence.” Chow and his colleagues sought to determine how consistently a cohort of nearly 170,000 people with HIV refilled their ARVs, relying on 2015 to 2017 prescription information from large databases. Forty-five percent of the cohort members were considered to have poor adherence because less than 80% of the days within one 12-month period were covered by their ARV prescriptions and refills. Thirty percent had suboptimal adherence (80% to just under 95% of days were covered), and just 25% had optimal adherence (95% or more days were covered). The average adherence rate was 72%. The study also looked at nearly 96,000 blood samples provided for drug resistance testing and found that 31% showed evidence of viral resistance to ARVs. From state to state, the prevalence of drug resistance ranged from 20% to 54%. States with a higher prevalence of poor or suboptimal adherence to ARVs had lower rates of full suppression of HIV as well as higher rates of residents living with HIV, newly diagnosed with the virus and dying of HIV-related causes.
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YOU MATTER AND SO DOES YOUR HEALTH If you’re HIV positive, it’s important to start and stay on HIV-1 treatment. DESCOVY® for HIV-1 Treatment is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs. DESCOVY for HIV-1 Treatment combines 2 medicines into 1 pill taken once a day. Because DESCOVY for HIV-1 Treatment by itself is not a complete treatment for HIV-1, it must be used together with other HIV-1 medicines to treat HIV-1. DESCOVY for HIV-1 Treatment does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS.
HOW TO TAKE DESCOVY FOR HIV-1 TREATMENT
PART OF ONE PILL, ONCE A DAY DESCOVY® (FTC/TAF) combined with other medicines in 1 pill is a complete treatment.
MULTI-PILL TREATMENT OR
One DESCOVY pill + other medicines is a complete treatment.
DESCOVY is not a complete treatment: it must be taken with other medicines. Do not change your dose or stop taking DESCOVY without first talking to your healthcare provider.
Ask your healthcare provider if an HIV-1 treatment that contains DESCOVY is right for you. To learn more about one-pill HIV-1 treatment options containing DESCOVY, visit onepilloptions.com
If you’re HIV negative, DESCOVY for PrEP® can help prevent HIV. DESCOVY for PrEP (pre-exposure prophylaxis) is a once-daily prescription medicine for adults and adolescents at risk of HIV. It helps lower the chances of getting HIV through sex. DESCOVY for PrEP is not for everyone: • It is not for use in people assigned female at birth who are at risk of getting HIV from vaginal sex, because its effectiveness has not been studied. • You must be HIV-negative before and while taking DESCOVY for PrEP.
Talk to a healthcare provider about your risk for HIV and if DESCOVY for PrEP may be an option for you. See how DESCOVY can help those at risk for HIV at DESCOVY.com/PrEP
Get HIV support by downloading a free app at
MyDailyCharge.com
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IMPORTANT FACTS
This is only a brief summary of important information about taking DESCOVY. This does not replace talking to your healthcare provider about your medicine.
MOST IMPORTANT INFORMATION ABOUT DESCOVY DESCOVY for HIV-1 Treatment and DESCOVY for PrEP® may cause serious side effects: • Worsening of hepatitis B (HBV) infection. Your healthcare provider will test you for HBV. If you have HBV and stop taking DESCOVY, your HBV may suddenly get worse. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to check your health or give you HBV medicine. Before starting and while taking DESCOVY for PrEP: • You must be HIV-negative. You must get tested for HIV immediately before and at least every 3 months while taking DESCOVY. If you think you were exposed to HIV, tell your healthcare provider right away. They may want to do more tests to confirm that you are still HIV-negative. • Many HIV tests can miss HIV infection in a person who has recently become infected. Symptoms of new HIV infection include tiredness, fever, joint or muscle aches, headache, sore throat, vomiting, diarrhea, rash, night sweats, and/or enlarged lymph nodes in the neck or groin. Tell your healthcare provider if you have had a flu-like illness within the last month before starting or while taking DESCOVY. • DESCOVY by itself is not a complete treatment for HIV-1. Do not take DESCOVY for PrEP unless you are confirmed to be HIV negative. • DESCOVY does not prevent other sexually transmitted infections (STIs). Practice safer sex by using a latex or polyurethane condom to reduce the risk of getting STIs. • To further help reduce your risk of getting HIV-1: • Do not miss any doses of DESCOVY for PrEP. Missing doses may increase your risk of getting HIV-1.
(des-KOH-vee)
ABOUT DESCOVY DESCOVY is a prescription medicine that has two uses: To treat HIV: DESCOVY for HIV-1 Treatment is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs. DESCOVY for HIV-1 Treatment combines 2 medicines into 1 pill taken once a day. Because DESCOVY for HIV-1 Treatment by itself is not a complete treatment for HIV-1, it must be used together with other HIV-1 medicines to treat HIV-1. DESCOVY for HIV-1 Treatment does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. To prevent HIV: DESCOVY for PrEP is a once-daily prescription medicine for adults and adolescents at risk of HIV who weigh at least 77 pounds. It helps lower the chances of getting HIV through sex. DESCOVY for PrEP is not for everyone: • It is not for use in people assigned female at birth who are at risk of getting HIV from vaginal sex, because its effectiveness has not been studied. • You must be HIV-negative before and while taking DESCOVY for PrEP. To help determine your risk of getting HIV-1, talk openly with your healthcare provider about your sexual health. Do NOT take DESCOVY for PrEP if you: • Already have HIV-1 or if you do not know your HIV-1 status. If you have HIV-1 and take only DESCOVY, your HIV-1 may become harder to treat now and in the future. • If you have HIV-1, you need to take other medicines with DESCOVY to treat HIV-1. Continued on the next page.
• Know your HIV status and the HIV status of your partners. If your partner is living with HIV, your risk of getting HIV is lower if your partner consistently takes HIV treatment every day. • Get tested for other STIs. Some STIs make it easier for HIV-1 to infect you. • Talk to your healthcare provider about all the ways to help reduce HIV risk.
Please see Important Facts about DESCOVY, including important warnings, continued on the next page and at DESCOVY.com.
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IMPORTANT FACTS (continued)
This is only a brief summary of important information about taking DESCOVY®. This does not replace talking to your healthcare provider about your medicine.
POSSIBLE SIDE EFFECTS OF DESCOVY DESCOVY for HIV-1 Treatment and DESCOVY for PrEP® can cause serious side effects, including: • Those in the “Most Important Information About DESCOVY” section. • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before and during treatment with DESCOVY. If you develop kidney problems, your healthcare provider may tell you to stop taking DESCOVY. • 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, lightcolored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. DESCOVY for HIV-1 Treatment can cause an additional side effect: • Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking DESCOVY for HIV-1 Treatment. The most common side effect of DESCOVY for HIV-1 Treatment is nausea. The most common side effect of DESCOVY for PrEP is diarrhea. These are not all the possible side effects of DESCOVY. Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY. 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 DESCOVY.
(des-KOH-vee)
• Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-thecounter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.
HOW TO TAKE DESCOVY DESCOVY for HIV-1 Treatment: • DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines. • Do not change your dose or stop taking DESCOVY for HIV-1 Treatment without first talking with your healthcare provider. DESCOVY for PrEP: • Take 1 tablet once a day, every day, not just when you think you have been exposed to HIV-1. • Do not miss any doses. Missing doses may increase your risk of getting HIV-1 infection. • Get tested for HIV-1 at least every 3 months. You must stay HIV-negative to keep taking DESCOVY for PrEP.
GET MORE INFORMATION • This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more. • Go to DESCOVY.com or call 1-800-GILEAD-5. • If you need help paying for DESCOVY for HIV-1 Treatment, visit DESCOVY.com/treatment for program information. • If you need help paying for DESCOVY for PrEP, visit DESCOVY.com/prep for program information. Advancing Access® specialists can help you understand your health insurance and Gilead medication costs. For more information, visit GileadAdvancingAccess.com or call 1-800-226-2056, M–F, 9am–8pm ET.
BEFORE TAKING DESCOVY Tell your healthcare provider if you: • Have or have had any kidney or liver problems, including hepatitis. • Have any other medical conditions. • Are pregnant or plan to become pregnant. DESCOVY, the DESCOVY Logo, DESCOVY FOR PrEP, DAILY CHARGE, the DAILY CHARGE Logo, LOVE WHAT’S INSIDE, ADVANCING ACCESS, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: January 2020 © 2020 Gilead Sciences, Inc. All rights reserved. DVYC0264 09/20
PZA524982.pgs 09.04.2020 16:27
ESA
RESEARCH NOTES
BY LIZ HIGHLEYMAN
PREVENTION
TREATMENT
CURE
Gene Therapy
COVID Consequences
A new experimental HIV vaccine using the same approach as a leading COVID-19 vaccine candidate triggered production of neutralizing antibodies that protected monkeys, researchers reported at the International AIDS Conference in July. The most promising HIV vaccine candidates use harmless virus vectors to deliver HIV proteins. Moderna’s new vaccine instead administers messenger RNA (mRNA) that instructs cells to make virus-like particles. Over the course of a year, 16 monkeys received eight injections using various vaccine regimens and were rectally exposed to an HIV-like virus. They produced antibodies that bind to HIV envelope proteins, with the level and durability of these antibodies increasing after each booster shot. However, the response was not equally strong for all types of HIV. The vaccine offered “significant protection,” the researchers reported. Of the seven monkeys that received the most effective vaccine regimen, three did not become infected with the virus, and infection was delayed in the other four.
Recent reports add to the evidence that people starting HIV treatment are prone to weight gain. A study of nearly 2,000 people in Africa found that those who started on the integrase inhibitor dolutegravir, tenofovir disoproxil fumarate (TDF) and lamivudine were 85% more likely to become overweight or obese than those starting other regimens, while those who had not yet begun treatment were 55% less likely to gain this much weight. A trial in South Africa found that people who started on dolutegravir, tenofovir alafenamide (TAF) and emtricitabine gained substantially more weight than those who used dolutegravir, TDF and emtricitabine or an efavirenzbased regimen. Women gained more weight than men—about 27 pounds within three years. Finally, a study of more than 138,000 Kaiser Permanente members found that people starting HIV treatment gained weight faster than their HIV-negative peers. These findings are concerning because excess weight can lead to cardiovascular disease and other health problems.
An experimental gene therapy approach that aims to protect HIV-fighting T cells has been cleared for its first human trial, but a company’s claim that this is “the most promising potential cure for HIV in the world” is premature. American Gene Technologies (AGT) has developed a method for collecting immune cells from an HIV-positive person and selecting CD4 T cells that target HIV. These cells are then genetically modified to disable CCR5 receptors— the gateway most HIV strains use to enter cells— and genes involved in viral replication. The modified cells are then returned to the same patient. AGT says the modified cells, dubbed AGT103-T, cleared HIV in laboratory studies, but it has not yet reported results from animal studies. The Food and Drug Administration gave the go-ahead for a Phase I clinical trial, slated to start in September. AGT says it expects initial data by the end of 2020, but this will be far too soon to determine if the modified T cells persist in the body or whether they can maintain viral suppression after stopping antiretroviral therapy.
Disruptions in prevention and treatment services due to the COVID-19 pandemic could overwhelm fragile health systems and lead to a substantial increase in deaths from HIV, tuberculosis and malaria worldwide, experts warn. In fact, these excess deaths could equal those directly caused by the new coronavirus. UNAIDS has projected that if subSaharan Africa sees a six-month disruption in antiretroviral treatment access, this could lead to 560,000 extra deaths by the end of 2021. Scientists at the Medical Research Council Center for Global Infectious Disease Analysis estimated that disruptions to prevention, care and treatment services could increase the annual death rate by as much as 10% for HIV, 20% for tuberculosis and 36% for malaria over the next five years. But there is still an opportunity to substantially reduce the death toll by prioritizing the most critical services: antiretroviral therapy for HIV, timely diagnosis and treatment of tuberculosis and durable insecticide-treated nets to control mosquitoes that spread malaria.
ALL IMAGES: ISTOCK
mRNA HIV Vaccine
Weight Gain
CONCERNS
poz.com OCTOBER/NOVEMBER 2020 POZ 27
BASICS
BY LIZ HIGHLEYMAN
DEALING WITH DEPRESSION Feeling sad or blue is common, but persistent depression can be treated.
H
28 POZ OCTOBER/NOVEMBER 2020 poz.com
If you are thinking about suicide, get help right away. Call the National Suicide Prevention Lifeline at 800-273-TALK.
• Poor concentration or impaired ability to think • Fatigue, unusual tiredness or low energy • Moving, talking or thinking more slowly • Feeling restless and unable to sit still • A sense of worthlessness or guilt • Recurrent thoughts about death or suicide.
Diagnosis and Treatment Diagnosing depression involves ruling out physical problems that can affect mood—for example, a low testosterone level or an underactive thyroid gland. In people with advanced immune suppression, opportunistic infections that attack the brain can contribute to changes in mood and behavior. Medication side effects may also play a role. The antiretroviral efavirenz (Sustiva, also included in the Atripla combination pill) has been linked to depression and other neuropsychiatric symptoms. Sometimes talking with a psychologist or other trained therapist may be enough to lift your mood. Evidencebased psychotherapy approaches for depression include cognitive behavioral therapy and interpersonal therapy. Many people also find group therapy or peer support groups helpful. In some cases, antidepressant medications may be needed. A variety of drugs that work in different ways— often acting on neurotransmitters that
enable neurons in the brain to communicate—are used to manage depression. Antidepressants can cause side effects, including drowsiness, constipation and changes in sexual function. Some can interact with certain HIV medications, so it’s important for your providers to work together to find a safe regimen. Antidepressants can take time to start working (usually two to six weeks), and they are not equally effective for everyone. However, many people who do not respond to one medication will do well on another. It often takes considerable trial and error to find the right regimen, but in a majority of cases, depression can be successfully treated. In addition to psychotherapy and antidepressants, there are other steps you can take to lessen feelings of depression, including exercise, eating a healthy diet, getting enough sleep and spending time with others. Studies show that HIV-positive people who have little social support are more likely to experience depression, and depression in turn can lead to social isolation. Maintaining social connections and avoiding isolation can be especially challenging now, given the physical distancing and limits on social activities required to slow the spread of COVID-19. Alternative ways of connecting with others include social media, online chat forums and simply picking up the phone to talk to a family member or friend. ■
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aving a low mood is common— especially in these challenging times—but people with HIV often experience more persistent feelings of sadness or depression, even under normal circumstances. Many aspects of living with HIV can contribute to depression, including fear of illness and death, loss of loved ones, survivor’s guilt, decreased self-esteem related to body changes, chronic pain, difficulty performing daily activities and struggles with stigma. Depression can range in severity from mild feelings of sadness to a persistent, severe depressed mood. Clinical depression, also known as major depressive disorder, is distinct from temporary sadness related to an event such as the death of a family member. It can last longer and interfere with daily life. According to the National Institute of Mental Health, people with chronic illnesses, such as HIV, heart disease or cancer, are more likely to experience depression compared with the general population, and depression can lead to worse disease outcomes. Depression is a real medical condition that can have serious consequences. Feelings of depression, low self-worth or hopelessness can contribute to poor adherence to antiretroviral treatment, resulting in HIV disease progression. In some cases, depression may lead people to seek relief through excessive use of alcohol, recreational or street drugs or risky sexual activity. If you are experiencing persistent depression, it may be time to seek help. If you have thoughts about self-harm or suicide, get help right away. Start by talking with your primary health care provider about getting a psychological evaluation and treatment, if appropriate. You may be referred to a psychologist, psychiatrist or other mental health specialist. Doctors use a list of symptoms from the Diagnostic and Statistical Manual of Mental Disorders to determine whether someone has clinical depression. These include: • A depressed or sad mood • Loss of interest and pleasure in most activities • Changes in appetite or unintentional weight loss or gain • Insomnia or excessive sleepiness
ENCUÉNTRENOS EN
TuSaludMag.com
SÍGUENOS EN
A SMART + STRONG PUBLICATION
YOUR VOTE
MATTERS “THE ISSUE IS AIDS. WHERE DO THE CANDIDATES STAND ON EDUCATION, HEALTH CARE, DISCRIMINATION? YOUR VOTE IS A WEAPON. USE IT. WE ARE AT WAR!”*
I
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N 1985, SIX GAY MEN WHO WERE LIVING IN NEW YORK CITY (Avram Finkelstein, Brian Howard, Oliver Johnston, Charles Kreloff, Chris Lione and Jorge Socarrás) formed a consciousness-raising collective to support one another during the early days of the AIDS crisis. To express their outrage at the government’s inaction on the issue of HIV, they decided to create a series of political posters. Their first, and now-iconic, poster featured the phrase “Silence = Death” printed in white below a pink triangle against a black background. In early 1987, the collective plastered the poster throughout the city in areas where it would be seen by members of the LGBT community as well as the media. Not long afterward, the activist group AIDS Coalition to Unleash Power (ACT UP) formed, and the collective’s poster became ACT UP’s unofficial logo. The collective became known as the Silence = Death Project and produced two more political posters before disbanding to work on other projects. BY JENNIFER MORTON live with a virus, and HIV advocates The final poster in the series, the know what it takes to fight one. Silence = Death Vote poster, which For the 2020 election, HIV advoappears on this issue’s cover, was cates are being challenged to leverage their votes to support created to boost voting in the 1988 election, when the AIDS candidates whose policies align with strategies for ending epidemic was at its peak. The poster challenged activists to the U.S. epidemic. Many of the HIV policies in the United educate themselves about candidates’ positions on HIVStates are determined at the state and local levels, and the related issues and to cast their votes accordingly. next election could have a significant impact on how HIV Today, with the 2020 election nearly upon us, we find ourand other resources are distributed in your area. selves in the midst of a new pandemic. Our scientists and To elevate campaign conversations about HIV-related public health experts are under attack. Fear and ignorance issues, ACT UP New York created a continuing virtual action regarding the new coronavirus threaten everyone’s health. on ACTUPNY.com that includes information on where each But for HIV advocates, such threats to public health are state stands on HIV education, HIV criminalization and Mednot new. We understand the importance of having access to icaid expansion. On the following pages, POZ has adapted health care and support when combating a life-threatening the group’s virtual demonstration to help you determine illness. We understand the importance of providing factual your state’s stance on the issues and let you know how to and unbiased information about how to prevent and treat a contact your candidates to demand action and change. virus. We understand that it’s wrong to discriminate against Are you up to the challenge? Remember to act up, fight anyone because they have a virus—because a virus does not back and, most importantly, vote. discriminate. People living with HIV know what it’s like to *Text from the 1988 Silence = Death Vote poster poz.com OCTOBER/NOVEMBER 2020 POZ 31
HIV CRIMINALIZATION
HIV EDUCATION
Most HIV criminalization laws were passed in the early days of the epidemic and do not reflect advances in modern HIV treatment and prevention. Some of these laws criminalize behavior that doesn’t even transmit HIV, and some criminalize behavior regardless of whether or not HIV is transmitted. These types of laws can discourage HIV testing because they punish those who know their status. Additionally, several states permit sentence enhancements if certain crimes are committed by someone living with HIV, and these often result in longer sentences for people of color. Here are some questions for your state and local candidates about issues regarding HIV criminalization.
Fortunately, even without a cure or a vaccine, we have the tools to end the HIV epidemic. We know how to prevent HIV. Practicing safer sex and not sharing equipment to inject drugs can prevent HIV transmission. U=U (Undetectable Equals Untransmittable) is shorthand for the fact that when people living with HIV are on effective treatment, they cannot transmit the virus sexually. Pre-exposure prophylaxis (PrEP) is an HIV prevention tool that enables an HIV-negative person to take antiretroviral medication to greatly reduce their risk of contracting HIV. Unfortunately, some states have chosen not to teach this information in their schools. While other states may require that HIV is taught, they don’t require the information to be accurate or up to date. It will be difficult to end the epidemic if we don’t teach future generations how to prevent it. Here are some questions for your state and local candidates about issues regarding HIV education.
If you live in a state that criminalizes HIV (gray or white on the map), you can ask: 1. HIV criminalization laws are outdated and unjust. People living with HIV who are on effective treatment and maintain an undetectable viral load cannot transmit HIV sexually. Will you support modern medicine by pushing to repeal HIV criminalization and enhanced sentencing laws? 2. Black Americans account for over 40% of people with HIV in the United States, so laws that punish people for getting and transmitting HIV can disproportionately affect the Black community more than others. These laws also discourage people from getting tested for HIV. Will you help end the HIV epidemic in the Black community by repealing HIV criminalization and enhanced sentencing laws? If you live in a state that does not specifically criminalize HIV (pink or purple on the map), you can ask: 1. The Occupational Safety and Health Administration (OSHA) ensures safe and healthful working conditions by setting and enforcing standards and by providing training, outreach, education and assistance. Yet some employers still incorrectly believe people can get HIV from spit, laundry or casual contact. Will you advocate for a review of OSHA’s statutes, standards and regulations to ensure that they accurately reflect how HIV is transmitted? 2. Some state public employees, including teachers and police, incorrectly believe HIV can be transmitted by spit and toilet seats, for example. Authority figures in our communities who maintain outdated beliefs can harm people living with HIV as well as people at risk for HIV. Will you advocate for mandatory HIV sensitivity training for all public employees?
32 POZ OCTOBER/NOVEMBER 2020 poz.com
If you live in a state that does not mandate medically accurate HIV education (any color but pink on the map), you can ask: 1. According to the Centers for Disease Control and Prevention
VOTING RESOURCES Looking for info on registering to vote, what’s on your ballot or how to contact your state and local representatives? Check out these websites: Vote 4-1-1 vote411.org/ballot AIDS United Elections Center aidsunited.org/elections PWN-USA Voting Toolkit pwn-usa.org/pwnvotes/
in accordance with CDC recommendations? 2. Currently, some students in the state learn about HIV, while others do not. Students who don’t learn about HIV at school are more likely to be at risk for the virus. Will you advocate for measures that ensure HIV education is being taught consistently across all public schools? (CDC), today’s antiretroviral (ARV) medication makes HIV nearly 100% preventable and treatable when taken as prescribed. Will you support legislation that mandates medically accurate HIV education—including information about U=U and PrEP—
If you live in a state that already mandates medically accurate HIV education (pink states on the map), you can ask: 1. Without meaningful compliance measures, many local schools can hide their noncompliance with the state mandate to provide medically
accurate HIV education. Teachers have anonymously reported feeling pressured to check off a box stating that they’ve taught about HIV, even when they haven’t. Will you advocate for meaningful compliance measures that ensure HIV education is being taught consistently across all public schools? 2. According to the CDC, today’s ARV medication makes the virus nearly 100% preventable and treatable when taken as prescribed, but many school districts are still teaching outdated info. Will you support legislation that requires regularly updating curricula to reflect current medical information—including information about U=U and PrEP— in accordance with CDC recommendations?
MEDICAID EXPANSION
(MAPS) COURTESY OF ACT UP NEW YORK
Medicaid is a critical source of health care coverage for many people living with HIV. People with a low income and who are part of a “categorically eligible” group (children, parents with dependent children, pregnant women and people with disabilities) can qualify for Medicaid. Each state establishes and administers its own Medicaid program, but they are all required to cover certain mandatory benefits. In 2010, the Affordable Care Act provided states with the option of expanding Medicaid eligibility to include people below certain income levels, which enabled greater access to HIV care and treatment. Here are some questions for your state and local candidates about issues regarding Medicaid expansion. If you live in a state that has not expanded Medicaid (white on the map), you can ask: 1. Treatment for HIV and other chronic illnesses is extremely costly for people without affordable insurance. The Affordable Care Act enabled thousands of Americans who had been denied affordable health care because of a preexisting condition, like HIV, to get health insurance. By expanding Medicaid, even more Americans will be able to access the medications they need to survive. Will you advocate to expand Medicaid to include those with an income at or below 138% of the federal poverty level?
1. Some states are using Section 1115 waivers to implement Medicaid expansion. While some of these waivers may be helpful, cost-effective ways to expand the program, others are being used to limit access to care. These types of waivers include those that base eligibility on work and work-related activities or drug screening and testing, those that limit the length of time people can remain covered and those that include “healthy behavior” provisions. Will you oppose creating or renewing Section 1115 waivers that are used to limit access to care? ■
If you live in a state that has expanded Medicaid (any other color on the map), you can ask:
Adapted with permission from ACT UP New York (actupny.com/election/)
poz.com OCTOBER/NOVEMBER 2020 POZ 33
SPEAKING WITH A COLLECTIVE VOICE
IN LAUNCHING A NEW GRASSROOTS NETWORK, LATINX PEOPLE LIVING WITH HIV DEFINE THEIR OWN AGENDA. BY JOE MEJÍA
THE ETHOS OF LATINX+ IS EVIDENT IN the organization’s name. For starters, there’s the modern-day gender-neutral/nonbinary “Latinx.” The term is as an alternative to Latino/a that emphasizes inclusion and is increasingly being embraced by young and queer people and left-leaning activists.
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Then there’s the “+,” which signals HIV positive, yes, but also communicates the concept of más, meaning “plus,” as in addition, or “more,” in Spanish. LatinX+ concerns itself with more than just HIV among Latinos; the new group seeks to address such intersecting issues as stigma, criminalization and immigration. LatinX+ is a grassroots network of predominantly HIVpositive advocates from across the United States and Puerto Rico formed in 2019 with the stated mission to speak with a collective voice on a variety of issues relevant to Latinos living with HIV. In deference to the fact that the Latino community is not a monolith, the group’s founding members represent numerous Latin American countries, including Colombia, Honduras and Mexico, either by birth or heritage, and they hail from various states as well as Puerto Rico. What’s more, members include men and women, veteran activists and younger advocates, queer and heterosexual people, and cisgender and transgender people. Although logistics, such as geography and limited resources—not to mention the ongoing COVID-19 pandemic—have reduced the members’ in-person face time with one another, LatinX+ nevertheless continues to work to define its agenda in an effort to ultimately improve the lives of Latinos with HIV and stem the spread of the virus among those who are HIV negative. The group has a nonhierarchical organizational structure reflective of its collective nature and mission. LatinX+ has no executive director or president, for example, but rather consists of a board of members with individual specialties honed from years working on the front lines of the HIV/ AIDS epidemic in the Latino community and in most cases from their lived experience as people with HIV. These include specialized advocates for immigration, youth and women, among others, with day jobs working for groups as varied as Positive Women’s Network–USA and Equality Florida. IN FEBRUARY 2019, THE GROUP CONVENED for a two-day strategic retreat in Milford, Pennsylvania, with fi nancial support from the Sero Project, the anti–HIV criminalization group started by POZ founder Sean Strub, and from Equality Florida, the largest civil rights organization for Florida’s LGBT community. Strub is also the mayor of Milford. He and his partner, LatinX+’s media advocate, Xavier Morales, have called the quaint town home for decades. In 1994, Morales helped Strub found POZ magazine. In 1997, Morales also assisted in the launch of POZ en Español along with Gonzalo Aburto, a fellow LatinX+ member who served as editor-in-chief of
the Spanish-language magazine, which published until 2003. Morales, who is Puerto Rican, says the idea for the group originated after examining the HIV/AIDS landscape and realizing that Latinos lacked a network with a self-defi ned agenda. Such a network for Latinos, he and the other members agreed, could address the full spectrum of issues of concern for this community, chief among them HIV stigma and its much more dangerous incarnation, HIV criminalization, as well as immigration. (HIV criminalization refers to the broad use of criminal law to penalize alleged, perceived or potential HIV exposure; alleged nondisclosure of HIV status prior to sexual contact; or nonintentional HIV transmission.) In an era when it may seem as though everyone knows how not to contract the virus, Morales says, the stigma attached to an HIV diagnosis is at an all-time high. In the early days of the HIV/AIDS epidemic, a community emerged and embraced newly diagnosed people. Today, however, support isn’t always readily available to guide people toward acceptance of their new positive status. Paradoxically, the availability of effective antiretroviral treatment for the virus since the mid-1990s might have played a role in this diminishing support. That’s because getting started on treatment very soon after a diagnosis leads to better long-term health outcomes. This fact may have caused health care workers to focus on getting people with HIV on meds, resulting in prioritizing their viral loads and CD4 counts over their psychological well-being and self-acceptance. THE DEGREE TO WHICH THE EVERYDAY experiences of Latinos remain largely invisible factored into the formation of LatinX+, says Mexico-born and New York City–based Aburto, who serves as the group’s international affairs advocate and the director of the Sero Project’s Latin America initiative. This invisibility persists despite the fact that in 2019 Latinos represented 18% of the total U.S. population. What’s more, Latinos constitute the country’s second largest racial/ethnic group behind non-Hispanic whites. This lack of visibility extends to HIV/AIDS, argues Aburto, specifically, in what he terms “the AIDS industry,” by which he means the many larger, more established national groups that enjoy the lion’s share of funds and influence in the HIV/ AIDS nonprofit sector. “As gay Latinos, we don’t have any organizations that can lead the way to demand what we need,” he says. Lacking such an organization, the needs of Latino men who have sex with men, who have a particularly high risk of contracting HIV, are not being met. One of the new network’s goals, says Aburto, is to educate Latinos about HIV by amplifying both past Latino voices and current social issues. This is to remind people of the place Latinos have occupied in HIV history as well as to stress to young Latinos that HIV is very much a part of their
poz.com OCTOBER/NOVEMBER 2020 POZ 37
the HIV epidemic. After all, one in six Latinos don’t know they have the virus, compared with one in eight in the overall population who don’t know their HIV status. ON THE SUBJECT of HIV stigma, LatinX+’s Caribbean patient advocate member Rosa Rivera Avilés, who is Puerto Rican, believes much more work needs to be done. She notes that there is a marked difference between tolerance, which she sees as a passive attitude, and acceptance, which requires that people more actively consider and respect those living The founding members of LatinX+ with HIV. Not only that, external at the group’s stigma is all too often internalized, inaugural meeting and “being in the HIV closet,” Rivera Avilés says, “limits access to services.” As an example, she cites the recent death of a 33-year-old Puerto Rican man, who despite having had an aunt who is an infectious disease doctor, didn’t discuss his diagnosis with anyone until he wound up in the hospital with no available treatment options. Rivera Avilés is critical of those who say that thanks to effective antiretroviral treatment, HIV is merely another chronic disease; she points out that unlike, say, diabetes, HIV can, for many people, pose an “untenable burden of stigma.” On a broader level, HIV stigma and an ignorance of current science wind up codified in the form of laws that criminalize potential exposure to HIV. These laws are used to prosecute people who don’t disclose their HIV status before sex. This results in criminal charges such as reckless endangerment or battery and also takes the form of HIV-specific sentence enhancements that increase penalties for people with HIV convicted of other crimes. This is regardless of whether HIV transmission has occurred, which it seldom does. In fact, according to the Sero Project’s Strub, transmission occurs in less than 5% of such cases. Furthermore, to be liable for such prosecution, those accused must have been tested and know that they are positive, which, Strub points out, “privileges the ignorance of not knowing one’s status.” Such laws disregard the current science that has proved that people with HIV who adhere to their antiretroviral treatment regimens and maintain an undetectable viral load cannot transmit the virus sexually, a concept known as
“THE ROOTS OF AIDS ACTIVISM INCLUDE FIERCE LATINX ADVOCATES LIKE SYLVIA RIVERA AND PEDRO ZAMORA.”
LATINO INVISIBILITY COMES AT A STEEP price. For one, it contributes to the aforementioned stigma. The less willing that HIV-positive Latinos are to share their stories about living with the virus, the more likely that shame will become inextricably linked with a positive diagnosis. This discourages people from getting tested and starting treatment, which helps explain why, once diagnosed, Latinos tend to present with more advanced HIV disease than whites. Stigma also interferes with adherence to antiretrovirals, leading to poorer health outcomes among Latinos when they do start treatment. Compared with whites, Latinos die of causes related to HIV at much greater rates. In 2016, the Department of Health and Human Services Office of Minority Health reported that Latino men are twice as likely as nonLatino white men to die of HIV-related causes, while Latinas are three times as likely as non-Latina white women to do so. According to the latest Centers for Disease Control and Prevention HIV Surveillance Report, Latinos accounted for 26% of total new HIV diagnoses in 2018. In addition, the rate of HIV diagnoses among Latinos was the second highest among all racial or ethnic groups, at 16.4 new cases per 100,000 people, compared with 4.8 per 100,000 among whites—nearly four times higher. (The highest rate was 39.2 per 100,000 for Blacks/African Americans.) The good news is that HIV rates have declined among Latinas; however, this contrasts with a 30% increase among Latino men who have sex with men since 2010. What’s more, Latino men ages 25 to 34 experienced a 68% rise in new HIV cases, and roughly 25% of trans Latinas are living with HIV. Intersectional stigma, that is, the stigmatization of multiple identities (gay, trans, Latino, immigrant), bears some blame for such statistics. Driving up testing rates among Latinos is key to combating
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present-day experience. “We must never forget that the roots of the AIDS activist movement included powerful and fierce Latinx advocates like Sylvia Rivera, Pedro Zamora and others who have been drowned and forgotten by mainstream histories. We need to make sure we create a new narrative when it comes to HIV,” Aburto stated on the occasion of LatinX+’s launch. Aburto has long been preoccupied with shaping this narrative for Latinos affected by HIV. But, he laments, much remains unchanged.
Undetectable Equals Untransmittable, or U=U. As of 2019, 34 states had such laws on their books, putting people with HIV in legal jeopardy for nondisclosure despite the fact that they can’t transmit the virus. LatinX+ works closely with the Sero Project to modernize such laws and help defend those prosecuted under them. In addition to fighting the criminalization of HIV, Rivera Avilés, who serves on the Ryan White Planning Group and the Advisory Committee for the AIDS Drug Assistance Program (ADAP), is also executive director of the HIV group Movimiento en Respuesta al VIH. FOR RIVERA AVILÉS, LATINX+ PRESENTED an opportunity to work with fellow Spanish-speaking colleagues to better serve non-English-speaking Latinos, particularly in Puerto Rico, which, despite being a U.S. territory, she says is often left out of national discussions about HIV. The island has an HIV rate of 15.6 new cases per 100,000 people compared with the overall U.S. rate of 11.5 per 100,000. Additionally, over the years, Rivera Avilés noticed that some of the organizations working on behalf of Latinos didn’t seem to have Spanish-speaking members. English is not her primary language, and she sometimes finds herself at HIV/AIDS conferences with no translators in attendance. This would seem to be an oversight for groups seeking to serve Spanish-speaking immigrants, especially considering that 42% of foreign-born people diagnosed with HIV from 2007 to 2010 in the United States were Latino, many of whom, presumably, do not speak English. Among these immigrants are many fleeing their native Latin American countries for fear of persecution for being gay or HIV positive or trans. Even after leaving their own countries and arriving at the U.S.-Mexico border, some immigrants, notably trans Latinas, continue to be persecuted. With several Spanish-speaking trans members on its board, LatinX+ may be uniquely suited to wage a battle against the mistreatment of trans immigrants at the southern border. Although Morales says the group currently lacks the resources to have a physical presence there, he foresees LatinX+ expanding its efforts to include advocating for HIV-positive people seeking asylum. He mentions two HIV-positive trans Latinas who died under suspicious circumstances while in the custody of the Department of Homeland Security’s Immigration and Customs Enforcement agency, or ICE. One, Roxsana Hernandez, who was seeking asylum from Honduras and was experiencing AIDS-related complications, may have been physically abused before her death in May 2018. Another trans woman, El Salvadoran Johana Medina León, might have been denied medical treatment for complications arising from her lack of access to her antiretroviral medications, resulting in her death on June 1, 2019. ICE maintains her death was caused by cardiac arrest. These stories have not garnered much coverage from the mainstream press, so LatinX+ shares them to raise awareness among the public. The group also engages with policy and decision makers at the national level with regard to
HIV-positive asylum seekers. ICE has 20,000 law enforcement and support personnel throughout the world and an annual budget of $8 billion. While some progressive Democrats have called for the abolition of ICE, President Trump has doubled-down, removing some formal restraints on the agency. Currently, there are 35,000 immigrants in detention in the United States, mostly in ICE centers. This election year, immigration reform is a priority for many activists, but even more is at stake. AS THE COVID-19 PANDEMIC HAS UNDERscored, numerous health disparities negatively impact Latinos. Of course, those in the HIV/AIDS community have long been aware of such inequities. But the increased awareness may bring about some needed health care reform. LatinX+’s Dianne Michelle Trinidad Ramos, the group’s Caribbean transgender advocate who also serves on the ADAP Advisory Committee for the Ryan White HIV/AIDS Program and works to promote the U=U message in Puerto Rico, emphasizes that voters should consider which candidates will work to preserve benefits such as Medicare and housing assistance. Medicare is of particular concern to people who, like Trinidad Ramos, are aging with HIV. About half of people with diagnosed HIV in the United States are over age 50, and this population experiences comorbidities, such as heart disease and kidney problems, at higher rates than the overall population, possibly driven by the inflammation caused by HIV. The LatinX+ website (LatinxPlus.com) seeks to educate the community about electoral issues by steering users to the resources of UnidosUS, which serves Latinos via research, policy analysis and advocacy efforts. UnidosUS champions the proposed Health Equity and Accountability Act of 2020, which would address the intersection of health disparities with immigration status, age, disability, sex, gender, sexual orientation, gender identity, language and socioeconomic status. It aims to increase federal funding for health care services for people of color living with HIV/AIDS; improve health care access for all, including undocumented children and families; and strengthen health data collection to inform policies to eradicate racial health disparities. If LatinX+’s agenda seems vast, that’s because it is. After all, the network is looking to fill what it sees as a huge void in the HIV/AIDS landscape, one that has persisted for decades. Not only that, LatinX+ is advocating for Latinos living with HIV from a holistic perspective. The group’s viewpoint takes into account the intersecting factors that define the experience of Latinos with HIV. That’s ambitious, to say the least, but also critical at a time when people are increasingly recognizing the role of race/ethnicity and socioeconomic and immigration status in health outcomes. All that said, since Latinos represent about 20% of the total population of 1.2 million people with HIV in the United States—roughly 240,000 people—there may be no better time for a nascent network such as LatinX+ to come into its own and take its rightful seat at the table. ■
poz.com OCTOBER/NOVEMBER 2020 POZ 39
HEROES BY ALICIA GREEN
Cristina Herrera moved to New York City in 1985, during the height of the crack cocaine and AIDS epidemics. At 16 years old, just as she was beginning her journey as a trans woman, she saw some of her peers fight addiction and die of AIDS-related causes. “I didn’t want that to be my path,” says Herrera, founder and CEO of the Translatinx Network, which is based in New York City. “I promised myself that I was going to do everything that I could to keep myself safe and empower my peers to stay safe.” Herrera put herself through college because she knew that an education would lead to better employment opportunities and help her advance her community. Once she earned her degree in sociology, she put it to work. For 11 years, she provided direct services and resources to transgender and gender-nonconforming people and LGBT immigrants through her job at The Lesbian, Gay, Bisexual and Transgender Community Center. “For many Black and brown trans women, it’s hard to have a long-term
40 POZ OCTOBER/NOVEMBER 2020 poz.com
employment opportunity, so that was a blessing for me,” she explains. In 2007, Herrera, who immigrated to the United States from El Salvador, founded the Translatinx Network to empower the Latina transgender community, including immigrants. “We were seeing different organizations and programs collecting dollars and giving [the transgender community] pennies,” she says. “I wanted to be able to really shift the way we provide support, services and resources and actually bring those resources to bigger communities.” According to Herrera, rates of HIV among the transgender community are high in part because many trans people don’t prioritize their health. It’s hard to focus on that aspect of one’s life while also struggling to find food or a place to sleep. The network addresses this issue through advocacy and education. “We talk about how we can educate our partners, communities and other organizations to be more involved in our well-being,” Herrera says.
“We empower our community to have access to prevention tools and to learn from their peers about ways they can reduce risk.” Since the start of the COVID-19 crisis, Herrera and her team have continued to provide clients with support and resources, such as healthy food, hygiene kits and personal protective equipment. Since April, 260 new clients have sought out the group’s services, which now include virtual programs and trainings. Among Herrera’s many goals is securing more funds to help trans people with HIV become more selfsufficient by providing financial assistance and other services. This, she hopes, will enable them to access more opportunities. She also wants to get all clients tested for the coronavirus. “Hopefully, as we fall into some type of normalcy,” she says, “we’re going to work with our community to see if they’re interested in getting into the labor force so we can give them the necessary training around that.” ■
COURTESY OF CRISTINA HERRERA AND THE TRANSLATINX NETWORK
TRANSLATINA PROUD
As founder and CEO of the Translatinx Network in New York City, Cristina Herrera provides services and support to the Latinx transgender community.
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VOTE 2020 SE ACERCAN LAS ELECCIONES DE 2020 y hay mucho en juego para las personas que viven con el VIH y las comunidades mayormente afectadas por la epidemia. POZ y Positive Women’s Network–USA (PWN-USA, por sus siglas en inglés) alientan a que todos participen y emitan su voto. Abajo presentamos sugerencias recopiladas de las Herramientas Útiles para las Elecciones de #PWNVotes para que este año hagas valer tu voto eficazmente y participes en las elecciones de tu comunidad.
PARTE 1: PREPÁRATE PARA VOTAR ¡Nuestra comunidad debe estar lista para votar antes de ir a las urnas! Aquí te ofrecemos algunos consejos para asegurarnos de que tú, tu familia y amigos estén preparados el día de las elecciones: 1. Averigua cuáles son las reglas y requisitos para votar en tu estado. 2. ¡Regístrate para votar! 3. Ayuda a otras personas a que se registren para votar. 4. Haz que la votación sea más accesible. 5. ¡Conoce tus derechos! 6. Mantente seguro cuando votes. (La mayoría de los estados ofrecen programas que protegen contra la violencia doméstica). Adicionalmente en la época del COVID-19, no te olvides usar una mascarilla. 7. Si tienes preguntas sobre cómo votar, busca las respuestas.
PARTE 2: INVESTIGA Las elecciones estatales y locales pueden tener un impacto importante en los intereses qué se representan y cómo se distribuyen los recursos. Estas son algunas maneras de investigar: 1. Averigua quienes son los candidatos que se presentan en tu distrito. 2. Regístrate para recibir las noticias de tus candidatos locales. 3. Busca información sobre los candidatos o ejemplos de boletas de voto de tu zona. 4. Infórmate sobre el perfil de los candidatos. 5. Aprende a evaluar a los candidatos. 6. Investiga cómo los candidatos afectarán a tu comunidad y las medidas que se votarán. 7. Interactúa con los candidatos en los eventos locales.
PARTE 3: PROMUEVE LOS TEMAS La temporada de elecciones es una oportunidad incomparable para comprender la postura de
representan y cómo se distribuyen los recursos. Estas son algunas maneras de investigar: 1. Averigua quienes son los candidatos que se presentan en tu distrito. 2. Regístrate para recibir las noticias de tus candidatos locales. 3. Busca información sobre los candidatos o ejemplos de boletas de voto de tu zona. 4. Infórmate sobre el perfil de los candidatos. 5. Aprende a evaluar a los candidatos. 6. Investiga cómo los candidatos afectarán a tu comunidad y las medidas que se votarán. 7. Interactúa con los candidatos en los eventos locales.
PARTE 3: PROMUEVE LOS TEMAS La temporada de elecciones es una oportunidad incomparable para comprender la postura de los candidatos sobre los distintos asuntos. Aquí presentamos algunas estrategias para interactuar con los candidatos y promover las cuestiones que te interesan: 1. Invita a los candidatos a tu clínica, agencia u organización. 2. Organiza reuniones con los candidatos. 3. Utiliza cuestionarios para evaluar a los candidatos. 4. Asiste a las reuniones o foros de los candidatos. 5. Sigue a los candidatos. (Esta táctica consiste en seguir a los candidatos y hacerles preguntas para llamarles la atención sobre tus causas o cuestiones de interés).
PARTE 4: PROMUEVE EL VOTO ¡El derecho a votar sólo importa si lo ejercemos! Presentarse en las urnas y alentar a que otros lo hagan son maneras fundamentales para hacer oír tu voz durante las elecciones de 2020. Estas son algunas de las formas de promover el voto: 1. Averigua sobre cómo votar temprano y cómo votar por correo en tu estado. 2. Infórmate sobre dónde y cuándo ir a votar y qué debes traer contigo el día de las elecciones. 3. Ofrécete como voluntario para trabajar en las mesas electorales. 4. Corre la voz y alienta a otros para que voten. 5. Conoce tus derechos. 6. Si fuera necesario, usa una boleta provisional. 7. Prepárate para resolver cualquier problema o duda que pueda surgir el día de las elecciones.
PARTE 5: ORGANIZATE PARA LA FUERZA POZ y PWN-USA están comprometidos a asegurar que las voces, perspectivas y prioridades de las personas que viven con el VIH estén representadas durante las elecciones de 2020. Para obtener enlaces a recursos y más información, visita poz.com/vote o pwn-usa.org/pwnvotes/.
Fuente: Adaptado con permiso de #PWNVotes Election Toolkit.
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